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In Conversation: Katherine Arnup on Death, Dying and Dignity During COVID-19

Gaby Novoa

August 4, 2020

In May 2018, the Vanier Institute published Family Perspectives: Death and Dying in Canada1 by Katherine Arnup, PhD, which examined the evolution of death and dying across generations, the desires and realities of families surrounding death and dying, the role of families in end-of-life care and its impact on family well-being.

With the current conversation surrounding COVID-19 and post-pandemic context, we joined in conversation with Dr. Arnup to hear her reflections on some of the themes explored in the 2018 report, and on the impact of the pandemic on conversations surrounding death and dying in Canada.


Tell us about how you feel COVID-19 has impacted the conversation and attitudes on death and dying among families and policymakers in Canada.

Death is in many ways in the public eye more now than it was prior to COVID-19, and has been from the get-go, once the virus became a presence in the world, because a number of countries experienced a large number of deaths before it really hit here. People were very aware that something major was happening in terms of death.

In Canada, we’ve had daily deaths, casualties and case counts being reported, much like in wartime. There’s been war imagery accompanying this in many ways, but certainly in my lifetime, I’ve never seen anything like this – it’s almost unavoidable. If you visit the CBC website, the first thing you see is the current counts, which makes you very aware of how many people have died. You can’t really get away from it, with these constant reminders. There’s a sense that we’re “at war” with a virus. Especially at the beginning, there was a sense that it could be anywhere, people nearby could be carrying it, and you could get it and it could kill you. A lot of fear – fear of the virus and a fear of dying.

One of the themes in Family Perspectives: Death and Dying in Canada is that people’s fear of death and dying deters families from having important conversations about it. Do you think the pandemic has forced people to think about death in a more in-depth way, or have anxieties and fears caused more avoidance of the conversation on death and dying?

I think it’s the latter. In my report, I was talking about a kind of acceptance of death and planning for death. But since there are many unknowns around COVID, which has struck so many people throughout the world, it’s different from anything any of us have experienced.

I think one of the biggest ways that COVID-19 and death have been front and centre throughout the pandemic is around seniors and their families. It’s quite true that the virus poses a greater risk for seniors than for anyone else, although certainly other factors make people vulnerable as well. However, seniors, and particularly people in their 80s and 90s and people with comorbidities, are likely to have a bad result and perhaps die as a result of contracting the coronavirus.

That’s especially been the case in long-term care facilities. In Ontario, the long-term care facility in Bobcaygeon was one of the first ones that the public really became aware of, where they had many deaths in a short period of time. Overall in Canada, the most recent data on this showed that 81% of the deaths in Canada were in long-term care, compared with the average of 42% in developed countries in the OECD.2 The numbers are much higher in Canada, so dramatic that the military was called in for assistance in Ontario and Quebec, which also fits with the military and war metaphors. They reported incredibly appalling conditions in those long-term care homes.3

I think a lot about long-term care homes now in a way that I didn’t before. I believe that I was just like most Canadians in that I didn’t think about them, beyond saying “I hope I never end up there,” and I think that’s very typical of Canadians. Maybe true for people in other countries, but I can say it for Canadians and that fits in with some of the things I’ve written about in the 2018 report and elsewhere: we want to live forever, but we want to be healthy, strong and independent – those are huge values for us.

Living in long-term care is something we really don’t want to think about, so most of us haven’t looked at the conditions there – many of which existed before the pandemic. That is, often four people to a room, staff working at several homes, understaffing, staff being very busy rushing from patient to patient and then going to another home. A lot of those things were happening already, and they created the conditions for the pandemic to grab hold and decimate long-term care populations.

I think those who have family in long-term care homes have had a huge wake-up call. They probably knew something about the conditions, and some of them were active caregivers in those homes – that is, going and caring for their loved ones – while some people virtually never visited. My aunt was in a long-term care home in a small town not that far from Bobcaygeon. I visited her when she was dying, and was actually really impressed with that home. She had her own room and you could tell that the staff cared for their patients, for their residents. I don’t think everything negative that we’ve seen is the case for all long term-care by any means. But we mostly just haven’t thought about it.

Pat Armstrong, a major scholar of health care in Canada, has been involved in a 10-year study of long-term care homes.4 She and her team remind people that though we don’t want to think about them, any of us could end up in long-term care almost in the blink of an eye: a major accident or a stroke, a fall that means we can’t care for ourselves, a diagnosis of dementia. Any of those things could mean that I end up in a long-term care home. I don’t want to, like most people, but we always think it’s going to be somebody else and not us. I think that the crisis has made us aware that it can be anyone – our mothers, our fathers, our sisters, ourselves. With change – and only one changed circumstance has to happen – we could be there as well. It’s a reminder that we all need to be fighting to change those institutions and how people die.

I was looking at the list of desires and assumptions discussed in the report, two of which stood out as I read the military report: we want to die at home and we want to die with dignity. It’s very clear that there was no dignity in the way that people were dying in long-term care homes. Indeed, there was no dignity in how they were being cared for, because of the conditions there. It’s also clear that people are there in those facilities because families can’t take care of them. It’s not that families don’t care. It’s that their own lives and the demands of their lives, and the lack of home care, means that they can’t care long-term for a family member who’s got dementia and maybe is acting out, or a family member who really needs 24/7 care.

Many Canadians also assume that they can get all the home care they and their families need. The pandemic has meant that many people had to cancel the home care that was coming in, especially at the beginning, because they were afraid to get COVID from their home care provider. Home care providers, by their very nature, are usually working in several homes. So, they’re potentially carrying the virus to many homes. It’s meant that not only is there not enough home care generally, but in the case of COVID, people were also hesitant to have those carers coming into their homes.

Like the pre-existing challenges in many long-term care homes, we’ve seen certain vulnerabilities and inequities amplified within the pandemic. Do you find any hope in how the conditions of long-term care are now being brought to greater public awareness?  

With long-term care homes, I feel a need to speak out about it, and to press governments to make changes that could have a huge impact, such as federal standards, or for senior care to be included in the Canada Health Act so that it becomes a shared responsibility across governments.

I think families have really mobilized and have seen the shortcomings and some of the reasons why the conditions are so bad. This is partly due to the for-profit homes, which have higher deaths, but also a lack of inspections and of enforcement of what exists in the law. In bringing it to the public attention as it has, in being such a tragedy, I think that there is hope for improvement, and I hope that many more people are now aware that it could be them, that it could be their families.

People who have children with severe disabilities who are living in congregate care are also facing similar issues of not being able to have family with them, as they still aren’t able to go into those homes. I do see a lot more discussion now around families as caregivers, having them recognized as caregivers and not just as visitors, as they’re being talked about. It’s an issue that the Vanier Institute has raised, I’ve done work with the Change Foundation, and there are other organizations that have made progress on that. So, I feel positive and see hope there for a recognition of the role of caregivers and their importance in the health and well-being of those who are cared for.

There has been increased opportunity to talk about advanced care directives. Even if people aren’t necessarily having those conversations, I think that if they’re faced with a family member getting COVID, it will spur the realization that we don’t always know what our family member wants. Even though the conversation around death hasn’t come on to the table in the best way, I think it provides openings for those of us who have been promoting the importance of advanced care. It provides an avenue for discussion, to be able to say to people that this is a realistic concern. We just never know when something will happen, and something will happen. We need to know what each other wants. Our children need to know what we want – I think the pandemic opens the door to that.

I’m writing and have been making videos, and I will be encouraging people in one of my next ones to talk to their family members (if they haven’t already) about what they want and about making advanced care directives, because it’s really important. Family members having to say “I just don’t know what Mom would want” is a mistake that doesn’t have to happen.

I feel optimistic about these things, and optimism in the face of a pandemic is in short supply. I’m optimistic around that sense that we’re all in this together, which we began this pandemic with. Our Prime Minister stressed this idea every day in his talks, and other people did as well. I think there has been significant pulling together around a sense of community and caring for one another. I’ve experienced this in my own neighbourhood – people who never normally talked to one another are checking in. When you go for a walk, people ask how you are doing and it’s genuine. I think that’s a strangely positive thing that is a result of the pandemic. I hope that it lasts, that people are doing things for elderly neighbours and that they’re more aware of who might be in need of help on their street. Anything that increases a sense of community I think is a great thing.

You touch on this point in your video “Expanding Our ‘Bubbles,’”5 on feeling reassured in many ways by this sentiment that we’re all in this together, though you also note that it has become increasingly apparent that we’re not all in the same boat. We might all be in it together, but the way we’re experiencing it varies greatly, whether it’s higher risk among seniors and other groups.6 Could you elaborate?

When you look at the breakdown of the areas that are still COVID hotspots, it’s where there are people living in poverty, people of colour, people who are working high-risk jobs in health care and in the service sector, and people living in large numbers together because they might not be able to afford anything else. Significant outbreaks among migrant workers employed in agricultural work and workers in food processing plants also demonstrate the impact of inequalities in our society on people’s vulnerability in the pandemic.

Another important way in which people haven’t been in it all together has been in families’ inability to have funerals, wakes, services or celebrations of life during the pandemic. I think this is having a huge impact on those who aren’t able to mark the death of a loved one with friends and family. There have been many families who couldn’t have a service of any kind, who couldn’t hug, who couldn’t get together beyond small groups. I just wonder what happens to that grief.

Many of those people who died, died alone. People in long-term care facilities and in hospitals have died alone. None of us wants that to happen. None of us wants it to happen to the people we love, and we don’t want to have it happen to us. It is an important tenet of hospice palliative care: let no one die alone. That this has been happening on a huge scale for the families left behind, it means enormous grief and guilt, feeling that “I couldn’t be there for Mom” or “I couldn’t be there with Mom when she was dying.” That’s heartbreaking. I don’t know what people do with that; you kind of have to push it down. I think about how all the obituaries say, “When it’s possible, we’ll have a service.” It’s hard for me to imagine all those services and where they’ll happen and whether that will provide the closure and support that people need. I certainly haven’t seen anything like that in my lifetime.

What gives you hope going forward? 

I think about these questions: What do we want when we die? But also, what do we want as we grow older? What do we need to support us in that? How are we dealing, in general, with aging and dementia? What do we hope for? How can we create places that are very different from long-term care homes? How can we make that happen?

Katherine Arnup, PhD, is a writer, speaker and life coach specializing in transitions, and a retired Carleton University professor. Author of Family Perspectives: Death and Dying in Canada (and several books, including “I Don’t Have Time for This!”: A Compassionate Guide to Caring for Your Parents and Yourself and Education for Motherhood, she has pioneered studies on family experiences and provided unique insights into family life throughout her career.

Gaby Novoa is responsible for Communications at the Vanier Institute of the Family.

This interview has been edited for length, flow and clarity. 


Notes

  1. Katherine Arnup, PhD, Family Perspectives: Death and Dying in Canada, The Vanier Institute of the Family (May 2018).
  2. Canadian Institute for Health Information, “Pandemic Experience in the Long-Term Care Sector: How Does Canada Compare with Other Countries?” CIHI (June 25, 2020). Link: https://bit.ly/3hGl4bc.
  3. Canadian Armed Forces, “Op LASER – JTFC Observations in Long Term Care Facilities in Ontario,” CAF (May 20, 2020). Link: .
  4. Pat Armstrong is a Distinguished Research Professor in Sociology at York University and a Fellow of the Royal Society of Canada. Link: .
  5. Katherine Arnup, “Expanding Our ‘Bubbles,’” (YouTube). Link:.
  6. In Family Perspectives: Death and Dying in Canada, Arnup writes that experiences of death and dying are affected by factors of gender, race, class, ethnicity, geography, marginalized status, ability, sexual and gender identity, marital status and Indigenous, First Nation, Inuit and Métis status.

A Snapshot of Family Caregiving and Work in Canada

At some point in our lives, there is a high likelihood that each of us will provide care to someone we know – and receive care ourselves. Family members are typically the first to step up to provide, manage and sometimes pay for this care.

Families are highly adaptable and most of the time people find ways to manage their multiple work and family responsibilities, obligations and commitments. However, juggling work and care can sometimes involve a great deal of time, energy and financial resources, and employers can play an important role in facilitating this care through accommodation, innovation and flexibility.

In , we explore some of the family realities and trends that shape the “landscape of care” across the country. This resource highlights how our family, care and work responsibilities intersect, interact and have an impact on each other.

Highlights include:

  • 28% of Canadians (8.1M) report having provided care to a family member or friend with a long-term health condition, disability or aging need in the past year.
  • Three-quarters of family caregivers (6.1M) were employed at the time, accounting for 35% of ALL employed Canadians.
  • Most (83%) surveyed caregivers say their experience was positive, and 95% say they are effectively coping with their caregiving responsibilities.
  • 44% of employed caregivers report having missed an average 8–9 days of work in the past 12 months because of their care responsibilities.
  • More than one-third of young carers (36%) arrived to work late, left early or took time off due to their caregiving responsibilities.
  • Employers across Canada lose an estimated $5.5 billion annually in lost productivity due to caregiving-related absenteeism.
  • Research shows that caregiving provides a variety of benefits to caregivers, including a sense of personal growth, increased meaning and purpose, strengthened family relationships, increased empathy and skill development.

 

Reconciling care and work requires understanding, respect and recognition from employers that sometimes an employee’s family circumstances need focused attention. Research shows that family caregivers and their employers benefit from policies that are inclusive, flexible and responsive, and when employees have a clear understanding of the process for handling individual requests for accommodation and customizing work arrangements.

For nearly all Canadians, caregiving is inevitable at some point over the course of their lives. Care is not always predictable and does not always arise outside working hours. Open communication and creative approaches to harmonizing work and care in a flexible manner benefits employees, employers, the economy and society.

Download from the Vanier Institute of the Family.

 

Work, Care and the Carer-Inclusive and Accommodating Organizations (CIAO) Standard

Emily Beckett

At some point in their lives, most Canadians will provide some type of care to a family member or friend with a long-term health condition, disability or aging need. Nearly 3 in 10 Canadians (28%) provided care in 2012,1 with age-related needs cited as the single most common reason for care requirements. With more seniors in Canada than ever – 6.6 million in 20192 – and projections showing that the number requiring care will likely double by 2031,3 this population aging means a growing share of Canadians will be stepping up to provide, arrange and sometimes pay for care in the years to come.

While research shows that caregiving can have can positive impacts on caregivers, including (but not limited to) reported personal growth,4 stronger family relationships5 and increased empathy,6 it can also affect their work–family quality and well-being – a topic of growing importance to working caregivers, employers and society.7

Most family caregivers are working caregivers

Nearly three-quarters of caregivers in Canada (6.1 million) are “working caregivers,” who accounted for more than one-third (35%) of Canada’s paid labour force in 2012.8 For some of these people, their time spent providing care amounts to a part-time job’s worth of hours in addition to their paid work, resulting in an “extended workday”: approximately 1 in 6 women and 1 in 10 men in 2012 reported spending 20 hours or more per week providing care on top of their work hours.9

Difficulties reconciling family caregiving with work responsibilities can have negative consequences for employees, employers and the economy. This can include frequent absences (44% of surveyed working caregivers report missing an average 8 to 9 days of work in the past year as a result of their caregiving responsibilities10) and a variety of indirect costs to employers, such as lost productivity, employee replacement costs and training.

Research shows that Canada loses the equivalent of 558,000 full-time employees every year from the workforce due to the conflicting demands of paid work and care,11 and an estimated 50% of working caregivers are between the ages of 45 and 65, representing the most experienced share of the paid labour market.12 Furthermore, employers across the country lose an estimated $5.5 billion per year due to caregiving-related absenteeism.13

A caregiving standard supports employers in supporting employees

To manage, mitigate and ideally prevent these negative impacts, the Canadian Standards Association (CSA) Groupa 100-year-old, not-for-profit and non-governmental organization that develops standards to ensure the health and safety of Canadians – collaborated with McMaster University to develop the Carer-Inclusive and Accommodating Organizations (CIAO) Standard.

Released in 2017, the CIAO Standard is an evidence-based, professionally verified framework for workplaces in Canada to support their employees who provide informal caregiving. Its aim is to avoid some of the negative physical and mental health outcomes for employees and their families that can result from role overload while they provide care.

The CIAO Standard was developed through rigorous consultation with a technical committee of experts representing a balanced number of volunteers from government, labour, employers and academia. These stakeholders refined the seed document of the standard, after which an extended public review was performed for critical feedback. The review revealed the value of the standard as an educational tool for employers.

“Even for organizations that don’t apply for the standard,” says Vanier Institute CEO and project advisory team member Nora Spinks, “using the rigorous process for education purposes or for planning and program design can be an effective organization developmental tool.”

Available at no cost from the CSA website, the CIAO Standard was created to offer workplaces a guide to minimizing the negative outcomes of conflict between caregiving and work responsibilities with a guaranteed minimum level of support and protection that goes beyond what’s offered by traditional employee assistance programs (EAPs). It allows employers to select the most appropriate elements for the context of their organization, as the effectiveness of certain standards may depend on the size of the workplace. CIAO provides case examples and stories to show employers how the standards can be implemented in their workplace. In addition to the CIAO Standard, the CSA Group also released the accompanying Implementation Guide: B701HB-18 – Helping worker-carers in your organization.

A caregiving standard can foster employee recruitment and retention

CIAO also addresses the hazards and risks that can be associated with caregiving and how they can affect well-being in the workplace. Since caregiving can be intensive, caregivers can experience increased stress or distraction in their jobs, as well as greater time stress as they accommodate the responsibilities of caregiving.

Depending on their line of work, the consequences of caregiver fatigue at work can vary, as it can lead to reduced vitals skills, such as decision making, communication, productivity or performance, attention, reaction time and ability to handle stress.14 These effects can lead to miscommunication, missed deadlines or lower work performance, or even increased physical risk for workers, their colleagues and clients or customers.

Psychologically safe workplace: A compatible and complementary standard

A psychologically healthy and safe workplace recognizes and eliminates or mitigates exposure to chronic stress. The world of work in Canada is evolving, and both employers and employees are more able and willing to recognize physical and psychological hazards in the workplace. Knowing that a workplace has a set of standards in place can be a determining factor in whether an employee chooses to stay or decides to leave as a result of their caregiving responsibilities.

In 2013, the Mental Health Commission of Canada (MHCC) developed a standard for Canadian workplaces to support the mental health of employees. Similar to CIAO, the National Standard of Canada for Psychological Health and Safety in the Workplace is a set of voluntary guidelines, tools and resources intended to guide organizations in supporting their workforce.15 These standards are complementary to the caregiving standard, and organizations can use either or both.

The standards are voluntary, but if they are part of education and awareness training, they can become adopted by the mainstream in workplaces and can help reduce absences, early retirement or quitting. The CIAO Standard fits with existing programs such as EAPs, fitness, medical, family or sick leave and work accommodations.16

A caregiving standard contributes to the growing body of well-being standards in Canada

Similar types of standards have been developed in recent years. In 2010 in Quebec, the Work–Family Standard was released for private and public organizations as a reference on requirements to support work–family quality.

The standard includes guidelines on flexibility in the organization and scheduling, vacation time, flexibility in the workplace and the goods and services provided in the workplace. The goal is to make work–family balance a staple in human resources management in organizations. The Bureau de normalization due Quebec (BNQ) offers certification for employers who apply this standard to their organization.17

Supporting employed carers going forward

The world of work is changing, and workplaces are better equipped to support their employees than ever, supported by a growing body of tools and resources. With the continuous population aging in Canada, more Canadians are going to balance caregiving and work in the years to come. By offering flexible hours at work, accompanied by education, open communication and understanding, workplaces can mitigate the loss of employees and productivity and support caregivers and their families during a transitional period in their lives. As workplaces and employees continue to work to harmonize work and family responsibilities, resources such as the CIAO Standard will play an increasingly important role in supporting working caregivers in Canada.

The Carer-Inclusive and Accommodating Organizations Standard is available on the CSA Group website.

Emily Beckett is a professional writer living in Ottawa, Ontario.

 


Notes

  1. New data on caregiving in Canada will be released by Statistics Canada in 2020.
  2. Statistics Canada, “Canada’s Population Estimates: Age and Sex, July 1, 2019,” The Daily (September 30, 2019). Link: .
  3. Chair in Gender, Health and Caregiver-Friendly Workplaces, Webinar: New CSA Standard & Handbook (April 5, 2018).
  4. American Psychological Association, “Positive Aspects of Caregiving,” Public Interest Directorate Reports (January 2011). Link: .
  5. Richard Schulz and Paula R. Sherwood, “Physical and Mental Health Effects of Family Caregiving,” Journal of Social Work Education, 44:sup3, 105–113 (September 2008). Link: .
  6. Diane L. Beach, “Family Caregiving: The Positive Impact on Adolescent Relationships,” Gerontologist, 37:2 (1997). Link:.
  7. Learn more about the impact of caregiving on family life and work in A Snapshot of Family Caregiving and Work in Canada.
  8. Employment and Social Development Canada, “When Work and Caregiving Collide: How Employers Can Support Their Employees Who Are Caregivers,” Report from the Employer Panel for Caregivers (January 27, 2016).
  9. Maire Sinha, “Portrait of Caregivers, 2012,” Spotlight on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (September 2013). Link:.
  10. Janet Fast, “Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges,” Institute for Research on Public Policy Study (December 2015). Link:.
  11. Ibid.
  12. CSA Group, B701-17 – Carer-inclusive and Accommodating Organizations (August 2017). Link:.
  13. Ceridian, “Double Duty: The Caregiving Crisis in the Workplace,” Results and Recommendations from Ceridian’s Working Caregiver Survey (November 5, 2015). Link:.
  14. Chair in Gender, Health and Caregiver-Friendly Workplaces.
  15. CSA Group, CAN/CSA-Z1003-13/BNQ 9700-803/2013 – Psychological Health and Safety in the Workplace (January 2013). Link: https://bit.ly/2RmKsZB.
  16. Chair in Gender, Health and Caregiver-Friendly Workplaces.
  17. BNQ, BNQ 9700-820: Work-Family Balance (2016). Link: https://bit.ly/2YjNeAd.

 

Research Recap: Caregiving in Military and Veteran Families

Alla Skomorovsky, Jennifer Lee and Lisa Williams

While research has shown that Canadian Veterans who transition to civilian life due to illness and/or injury often experience difficulties adjusting to their new context, a growing body of academic literature has found that the “strength behind the uniform” – the military and Veteran families providing care to these people – can also be affected by the well-being and transition experiences of the Canadian Armed Forces (CAF) member.1, 2

Depending on the severity of the illness and/or injury sustained, military members may require assistance with daily life activities (e.g., grounds maintenance, meal preparation, cleaning services) and family members are often the first to provide, arrange and/or pay for this care, which can range in intensity, duration and frequency. As the ill/injured military or Veteran family member adjusts and adapts to the limitations of the illness and/or injury itself, and to their new civilian lifestyle, they can experience strain and tension in their family relationships.

In military families, spouses of military members are often the primary caregivers, and providing this care can have a negative impact on their own health, well-being and careers. Moreover, research shows that caring for military personnel with psychological illnesses can be particularly taxing for caregivers and increase the risk or extent of their own psychological distress due to the military member’s increased reliance on them for cognitive and/or emotional tasks and support.

Limited research has examined the unique experiences, perceptions and impacts of transition to civilian life on the families of CAF personnel or Veterans, particularly those who have been medically released due to illness and/or injuries. However, a past pilot study conducted in 2014–2015 among CAF families transitioning to civilian life suggested that the cumulative effects of illness or injury of a military member combined with their transition to civilian life can have a significant impact on various domains of family functioning.3

Following the lines of the literature reviewed above, Director General Military Personnel Research and Analysis (DGMPRA) conducted a study in 2017–2018 in order to explore and enhance our understanding of the experiences of families of ill and/or injured CAF members or Veterans at various stages of the medical release process regarding their transition from military to civilian life through a series of semi-structured interviews.4

Illness and injury affects family well-being and relationships

Consistent with the literature, interviews indicated that the CAF members/Veterans’ health directly impacts their family members’ well-being, particularly when family members play a caregiving role for the member/Veteran.

[As reported by the parents of a member/Veteran]: Because we struggled really, back then it was a real struggle. When he first came home from the very first tour was a huge struggle. I mean, he’s lost two relationships. He’s had two family breakdowns because of his PTSD.

The members/Veterans could also see the impact on their family members, including the children.

My daughter, [who] is 21, has been probably impacted the most by me, like from what she’s seen me go through. And it’s been really hard on her… because of my anxiety and my depression and everything, she now has anxiety and depression.

Most spouses related the strain on their familial, social and personal well-being primarily to the members/Veterans’ illness/injury, rather than the transition itself.

I think it’s all relative to the whole process… you have a member that’s dealing with their own mental health issues, but not seeking active treatment for himself, and they think that… you know, like, their depression, or their anxiety, their PTSD. And the other partner picks up the slack in the household. It’s difficult to carry that all the time.

Family members reported experiencing strain in their relationship with the CAF member/Veteran. In particular, many family members, who were also spouses, reported a lack of satisfaction and intimacy in their relationship with the CAF member/Veteran, as well as experiencing an emotional disconnect and/or resentment.

He’s got absolutely no interest in sex, that’s a huge impact in our relationship. Yeah, so… as a couple, that’s a difficult one to work through… to lose that intimacy with your partner.

So kind of emotionally distant, on an intimate level, absolutely more distant. It’s kind of like on the outside looking in.

I’m doing more than my share. And actually, if I go back and think about that, there is sometimes that…. Then at times, because I would like him to be more engaged in his care than I am. So yeah, there’s a bit of resentment there if I’m totally honest with myself. 

Caregiving intersects and interacts with other family responsibilities

Family members providing care to the ill or injured military members/Veterans – predominantly spouses – indicated that caregiver burden was a major contributing factor toward their reduced physical health and/or psychological well-being. Examples include the additional cognitive and physical demands placed on the caregivers, such as ongoing monitoring of the CAF member/Veteran, physically assisting CAF members/Veterans to complete their daily activities and taking over previously shared tasks (e.g., gardening, cooking, cleaning).

He is not able to physically do what he has done in the past before he was hurt, and so I took on the task of, well, everything – physical mainly – around the house. And I ended up hurting my back because of it. Somebody needs to do it, and uh… so I ended up hurting my back and now I can’t even work because of this.

Some spousal caregivers also noted that they felt emotionally and mentally drained due to the increased responsibilities and the lack of time they had for self-care. Other consequences they experienced as a result of caregiving include negative health outcomes and work repercussions.

I think it’s really isolating for a caregiver. Like, I wanted to be there for my husband and my spouse. I want to take care of him, do whatever he needs, but then… not that it’s anybody else’s fault, but where’s my break?

I feel like I’m not supported, so I just deal with that on my own, you know. I feel like I bear the brunt of the… of the housework… I feel like I have to get things done on my own. So I feel like I’m sacrificing my own health.

In comparison with spouses providing care, parents providing care typically reported that the members/Veterans’ illnesses and/or injuries did not affect their own personal lives or health. However, this might have been due to the lesser proximity and frequency with which they provided assistance.

Communication between partners can mitigate the impact of caregiving

Despite the reported negative impacts that caregiving, the transition experience and the illness/injury had on their spousal relationship, many spousal caregivers also reported growth in their relationship. According to study participants, the quality and clarity of communication in their relationship was an important factor that appeared to influence the severity of negative impacts. As a result of their shared transition experience and communication, many spousal caregivers reported feeling closer to the CAF member/Veteran as well as becoming a better team. Thus, it is possible that having effective communication bolsters spouses’ tolerance for the additional caregiving responsibilities and burden.

We’ve grown more into a team than a… than a couple almost. Like, what do we have to get done? Okay, how are we going to do it? So yeah, our lives focus mostly on that.

Communication is the key there, especially in a relationship.

Lessons learned and the way forward

This study helped to shed light on the experiences of CAF families during military to civilian transition. Results demonstrate that the transition experience does not solely affect the member/Veteran – it affects their family members and caregivers as well. The majority of family members and, especially, caregivers reported feelings of distress and unease during the transition process, but most reports of the decline in physical, psychological and social well-being were attributed to consequences of the illness and/or injury.

Some important methodological limitations of the present study should be considered when interpreting the results. First of all, the study was designed with an assumption that all ill and injured CAF members/Veterans who participated in the study would have caregiving needs and access to a caregiver (e.g., spouse, sibling, parent) because they had been medically released, and this influenced the development of questions used during the interview process. However, it became clear throughout the interviews that some releasing CAF members/Veterans did not have a caregiver, nor did they necessarily perceive themselves as requiring care, despite suffering from various limitations as a result of their illness and/or injury. Second, although a sizable number of CAF members/Veterans participated in the study, they were in varying stages of transition. Due to the length of the interview, it was not possible to include detailed questions regarding each stage of the transition process. Finally, given the qualitative methodology used in the study, the results are not representative of the population as a whole.

To address these limitations and build on this research, DGMPRA has developed a comprehensive research program related to military families, collaborating extensively with other government agencies – Veterans Affairs Canada and Statistics Canada. This body of research seeks to enhance the lives of military personnel, Veterans and their families across the country.

Through its exploration of the challenges experienced by families of ill and injured CAF members/Veterans, this study provides directions for enhancing the transition experience of military families and maintaining their overall well-being. With the trend for medical releases on the rise since 2013,5 this is an issue of growing importance for Veterans, their families and Canadian society as a whole. It is important to continue developing the expert knowledge necessary to support these families and to find ways to ensure their individual and family well-being.

Alla Skomorovsky, PhD, is a research psychologist at Director General Military Personnel Research and Analysis (DGMPRA), where she is a member of the Social Policy and Family Support Programs team. She conducts quantitative and qualitative research in the areas of resilience, stress, coping, personality and well-being of military families.

Jennifer Lee, PhD, is Chair of The Technical Cooperation Program (TTCP) Human Resources and Performance Group (HUM) Technical Panel 21 on Resilience and Acting Director of Research on Personnel and Family Support at DGMPRA, where she has been overseeing her team’s work on a range of topics, including sexual misconduct; diversity and inclusion; military, Veteran and family health; and, more recently, the implications of the legalization of cannabis on Canadian Armed Forces personnel.

Lisa Williams, MA, is a researcher at DGMPRA, where she is a member of the Social Policy and Family Support Programs team. She conducts quantitative and qualitative research in the areas of military, Veteran and family well-being.


Notes

  1. Jim Thompson, MD, et al., “Survey on Transition to Civilian Life: Report on Regular Force Veterans,” Veterans Affairs Canada (2011). Link: .
  2. Learn more in A Snapshot of Military and Veteran Families in Canada (November 2018 update). Link: .
  3. Alla Skomorovsky et al., Pilot Study on the Well-Being of Ill or Injured Canadian Armed Forces (CAF) Members and Their Families: Well-Being Model Development (2019). Scientific Report. DRDC-RDDC-2017-R203.
  4. A total of 72 semi-structured interviews were conducted, 16 of which were omitted from further analysis due to ineligibility (e.g., non-medical release, over 5 years since release). Of the remaining 56 interviews, there were 31 individual interviews with CAF members or Veterans, 11 individual interviews with primary caregivers and 14 combined interviews. Participants consisted of CAF Veterans who were medically released within the past 5 years or members who were expecting to be medically released within the near future (i.e., within 24 months of the study) due to a psychological or physical illness and/or injury. Their primary caregivers, operationally defined as the individual who provides the majority of care and/or support (physical or psychological) to the CAF member/Veteran, were also included in the interview process. Primary caregivers were typically a family member (e.g., sibling, parent) and, in the vast majority of cases, the spouse. Eligible participants were interviewed either in person or by phone at a time of their choice.
  5. Linda Van Til et al., “Well-Being of Canadian Regular Force Veterans, Findings from LASS 2016 Survey,” Veterans Affairs Canada – Research Directorate Technical Report (June 23, 2017). Link:.

Published on July 25, 2019

Research Recap: Beyond “Snapshots” to “Lifetimes” of Family Care

Janet Fast, Norah Keating, Jacquie Eales, Choong Kim and Yeonjung Lee

According to the most recent General Social Survey (GSS) on Caregiving and Care Receiving, 28% of Canadians provided care to a family member or friend in the previous year.1 But “snapshots” in time such as this don’t paint a complete picture of caregiving experiences. Looking across the life course provides more insight into how Canadians are engaged in care across their lives and reveals a number of lifetime “pathways” of care that are commonly experienced.2 In fact, half (46%) of all Canadians have provided care at some time in their lives, showing that family care is a much more common experience than many people had imagined. It’s time to move beyond snapshots to focus on lifetimes of family care.

Groundbreaking research at the University of Alberta, using data from Statistics Canada’s 2012 GSS shows, for the first time, five distinct care trajectories (pathways) across the life courses of 3,299 adults aged 65 and older: Late Bloomer, Encore, All at Once, Enduring and Serial. This innovative perspective shows not only how care evolves across the life course but that it evolves in diverse ways for different individuals. We now can examine the cumulative lifetime impact of caregiving to identify carers at greatest risk of poor health, social isolation and poverty in later life to better target policy interventions.

A life course approach highlights diverse patterns of caregiving across carers’ lives

Research shows that 1 in 2 Canadians aged 65 and over – or more than 2 million people – have cared for others one or more times across their lives.

CARE TRAJECTORIES

Late Bloomer

One in 2 carers (54%) follow a Late Bloomer pathway. Its defining feature is a single, short episode of providing care (fewer than 5 years), mostly to spouses or parents. This pathway starts in the early 60s (average 63 years); 43% of Late Bloomer carers are men and 57% are women.

Encore

One in 4 carers (25%) follow an Encore pathway. Its defining feature is a first long episode of providing care, mostly to parents or spouses, followed by shorter episodes increasingly to same-generation friends or neighbours. This pathway starts in the early 50s (average 52 years) and lasts nearly 14 years; 41% of Encore carers are men and 59% are women.

All at Once

One in 10 carers (11%) follow an All at Once pathway. Its defining feature is a decade or more of providing care, mainly to parents or parents-in-law, and usually for more than one parent at the same time. This pathway starts in the early 50s (average 52 years); 36% of All at Once carers are men and 64% are women.

Enduring

One in 16 carers (6%) follow an Enduring pathway. Its defining feature is a first very long episode of providing care to close family, followed by a second long episode of providing care to close family or friends. Care to children or siblings with chronic health conditions/disabilities was notable. This pathway starts in the early 30s (average 34 years) and has the longest duration (average 33 years); 37% of Enduring carers are men and 63% are women.

 

Serial

One in 25 carers (4%) follow a Serial pathway. Its defining feature is a long-term pattern of caring for others (close relatives, distant relatives, friends or neighbours), often at the same time. This pathway starts in the mid-30s (average 36 years) and spans more than three decades (31 years on average). Of all care pathways, the Serial pathway has the largest proportion of women carers (71%).

 

Read the full “Life Course Trajectories of Family Care” open access study through Intenga Connect.

Authors

Janet Fast, PhD, is a Family Economist and Professor, Department of Human Ecology, University of Alberta.

Norah Keating, PhD, is a Family Gerontologist and Director, Global Social Issues on Aging (International Association of Gerontology and Geriatrics).

Jacquie Eales, MSc, is a Communication and Knowledge Translation specialist and Research Manager, Department of Human Ecology, University of Alberta.

Choong Kim is an Applied Economist and PhD candidate, Department of Human Ecology, University of Alberta.

Yeonjung Lee, PhD, is a specialist in Comparative Welfare States and Gerontology and Assistant Professor, Faculty of Social Work, University of Calgary.

 

Notes

  1. Maire Sinha, “Portrait of Caregivers, 2012,” Spotlight on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (September 2013). Link:.
  2. Joohong Min, Yeonjung Lee, Janet Fast, Jacquie Eales and Norah Keating, “Life Course Trajectories of Family Care,” Innovation in Aging, 2:1 (November 2018). Link: .

 

A Snapshot of Grandparents in Canada (May 2019 Update)

Canada’s grandparents are a diverse group. Many of them contribute greatly to family functioning and well-being in their roles as mentors, nurturers, caregivers, child care providers, historians, spiritual guides and “holders of the family narrative.”

As Canada’s population ages and life expectancy continues to rise, their presence in the lives of many families may also increase accordingly in the years to come. With the number of older Canadians in the workforce steadily increasing, they are playing a greater role in the paid labour market – a shift felt by families who rely on grandparents to help provide care to their grandchildren or other family members. All the while, the living arrangements of grandparents continue to evolve, with a growing number living with younger generations and contributing to family households.

Using newly released data from the 2017 General Social Survey, we’ve updated our popular resource A Snapshot of Grandparents in Canada, which provides a statistical portrait of grandparents, their family relationships and some of the social and economic trends at the heart of this evolution.

Highlights:

  • In 2017, 47% of Canadians aged 45 and older were grandparents, down from 57% in 1995.1
  • In 2017, the average age of grandparents was 68 (up from 65 in 1995), while the average age of first-time grandparents was 51 for women and 54 for men in 2017.2, 3
  • In 2017, nearly 8% of grandparents were aged 85 and older, up from 3% in 1995.4
  • In 2017, 5% of grandparents in Canada lived in the same household as their grandchildren, up slightly from 4% in 1995.5
  • In 2017, grandparents who were born outside Canada were more than twice as likely as Canadian-born grandparents to live with grandchildren (9% and 4%, respectively), the result of a complex interplay of choice, culture and circumstance.6

Published on May 28, 2019

1 Statistics Canada, “Family Matters: Grandparents in Canada,” The Daily (February 7, 2019). Link: .
2 Ibid.
3 No comparator provided because this is the first time the question has been asked in the General Social Survey.
4 Ibid.
5 Statistics Canada, “Family Matters: Grandparents in Canada.”
6 Ibid.

Modern Mothers in Canada “Making It Work”

Mother’s Day is just around the corner, a time when Canadians of all ages recognize and honour mothers, grandmothers and, increasingly, great-grandmothers. As women across Canada – including new and expectant mothers – continue to increase their presence in the workforce, families, communities and policy-makers are adapting and reacting to provide flexibility for working moms.

Flexible workplaces helping working moms manage caregiving responsibilities

New and expectant mothers in Canada are increasingly engaged in the workforce, many of whom also provide care to ill and injured family members. Research shows that workplace flexibility is helping moms manage their multiple responsibilities, which in turn can have a positive impact on family well-being.

  • In 2016, the labour force participation rate of mothers whose youngest child was under age 6 was 73%, more than double the rate in 1976 (36%).1
  • In 2012, 72% of surveyed women said they were satisfied with their work–life balance – the rate was significantly higher for those with a flexible schedule (75%) than for those without a flexible schedule (63%).2
  • In 2012, 3 in 10 women were caregivers, 1 in 6 of whom spent 20 or more hours per week providing care.3
  • In 2012, 63% of working mothers who were also caregivers said they were satisfied with their work–life balance (compared with 73% among fathers).4

New benefit options providing flexibility to new and expectant working mothers

A number of changes to Canada’s Employment Insurance (EI) maternity and parental benefits5 program went into effect December 3, 2017, providing more flexibility to working mothers (and fathers) through more options regarding the timing and duration of the benefit period.6

  • Parents can now choose an extended parental benefits option, which allows them to receive their EI parental benefits over a period of up to 18 months at a benefit rate of 33% of average weekly earnings. This extends the duration of the benefit period but decreases the benefit rate, which stand at 12 months and 55% of average weekly earnings, respectively.7
  • Expectant mothers are also now able to file for benefits up to 12 weeks before their due date – four weeks earlier than the previous eight-week limit (no additional weeks are available).

 

Notes


  1. Canadian Institute of Child Health, “Module 8, Section 2: Labour Force Participation Rate,” The Health of Canada’s Children and Youth: A CICH Profile (2018). Link: .
  2. Statistics Canada, “Satisfaction with Work–Life Balance: Fact Sheet,” Spotlight on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (page last updated August 12, 2016). Link: .
  3. Maire Sinha, “Portrait of Caregivers, 2012,” Spotlight on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (page last updated November 30, 2015). Link:.
  4. According to Statistics Canada, this is in part because “women are more likely than men to provide care to a family member or friend suffering from a long-term health condition. In addition, those caregivers provide more hours of care on average.” Link:.
  5. These changes do not apply in Quebec, which has followed the Quebec Parental Insurance Plan (QPIP) since 2006.
  6. Qualifying standards remain in place: workers require 600 hours of paid employment in the previous year to be eligible, and benefits are generally paid at 55% of average weekly earnings, up to a cap. As of January 1, 2018, the maximum yearly insurable earnings is $51,700 (a maximum amount of $547 per week). Link: .
  7. The potential overall benefit hasn’t changed: they either can be used up over 12 months or the same amount of money can be stretched out over 18 months. Parents must choose between the standard or extended option when they first apply for EI benefits, and are “locked in” once they do so.

Family Perspectives: Death and Dying in Canada

Death is a natural part of life, but many Canadians are hesitant to have essential conversations about the end of their lives. The Vanier Institute of the Family seeks to change this with the publication of, a conversation catalyst intended to spark dialogue in households, workplaces and communities across the country by exploring death and dying through a family lens.

Family Perspectives: Death and Dying in Canada examines the evolution of death and dying in Canada across generations, the desires and realities of families surrounding death and dying, the role of families in end-of-life care and its impact on well-being. Through current data and trend analysis, interviews with caregivers and families, and reflections on hospice volunteering from author Dr. Katherine Arnup, this study discusses death and dying within the current and emerging social, cultural and policy landscapes.

Highlights:

– Hospice palliative care can play an important role in helping dying people and their families, yet most Canadians don’t receive any.

  • Palliative care benefits up to 85% of dying people at the end of their lives.
  • An estimated 16% to 30% of Canadians receive some form of palliative care, depending upon where they live.
  • Three-quarters (74%) of surveyed Canadians report having thought about end-of-life care, but only one-third (34%) have actually had a conversation with a family member. 

– Medical assistance in dying (MAID) is having an impact on the conversation on death and dying in Canada. 

  • Since June 2016, more than 2,600 people across Canada have obtained medical assistance in dying.
  • More than one in eight seniors in Canada (12%) say they or a family member have talked to a health care provider about access to MAID.

– Death is becoming less taboo in Canada, thanks to care providers and community initiatives. 

  • Hospice staff and volunteers, death doulas and other end-of-life practitioners are providing diverse forms of support to many families in Canada, including facilitating advance care planning and discussions about end-of-life care, coordinating care and providing grief support.
  • “Death Cafés” are helping people across Canada to gather and discuss their thoughts about death and dying.

“While many people are hesitant to talk about death and dying with their families and health care providers, some of the silence surrounding death and dying in Canada has been broken – a step in the right direction,” says Dr. Arnup. “Talking about death with family, planning for what we hope for and supporting others can help us to see that death is a natural part of life that is not inherently undignified, and to appreciate the present, thereby enriching our lives.”

“Birth and death are among the few universal family experiences,” says Vanier Institute CEO Nora Spinks. “Many Canadians and their families are hesitant to discuss death despite the importance of these conversations in providing and arranging for the care of loved ones at the end of life. It is our hope that Family Perspectives: Death and Dying in Canada helps to move the conversation forward as we recognize and celebrate National Hospice Palliative Care Week.”

Download

 


Published on May 7, 2018

 

Alan Mirabelli: Hub Hospice and the Palliative Care Experience

Alan Mirabelli was the Vanier Institute of the Family’s Executive Director of Administration, who retired in 2007 after more than 30 years of service. He was diagnosed with cancer the first time in 2015 and again in 2017. Throughout his treatment and following his terminal diagnosis, he continued to be of service, mentoring many emerging artists and seasoned photographers, community leaders and elected officials. His characteristic kindness, generosity and mentorship had a significant impact on many people across Canada and abroad.

Over the years, Alan gave countless presentations, keynote addresses and lectures, and he facilitated many workshops with diverse groups in hotel ballrooms, quaint retreats and boardrooms and conference rooms. His final presentation was hosted by Hub Hospice Palliative Care, a unique community-based hospice-at-home organization in Almonte, Ontario that Alan came to know, as a recipient of their caring and compassionate services. He spoke to a large audience of community members, academics, health care professionals, end-of-life service providers/volunteers and their families. You could hear a pin drop as people clung to his wise and perceptive words. Alan invited people to donate to Hub Hospice, and died only weeks after giving the presentation.

This article is based on Alan’s presentation, which has been edited for print.


 

Hello, how are you?

In the Maasai culture, the common greeting is quite different – and it leads to a different result. Their greeting is, “How are the children? Are the children well?” By paying close attention to greetings, you can learn a lot about what matters to a people. When you consider the Maasai greeting, there’s a vision in the culture that goes beyond today. It’s not just a casual, passing remark – it reflects a sense of care and a sense of direction for the culture’s future.

When you live in a culture in which you are truly vulnerable, where there aren’t systems of health care and they don’t have all the things we take for granted, this expression of care is from the heart. The answer they expect is that all of the children are doing well, not just some of the children.

I use that story to point out the difference in cultures where care is expressed daily, and people aren’t simply asking if the children are well. What they’re doing, in fact, is preparing the next generation to look after them when they’re old. It’s anticipating the needs; if you don’t acculturate the young people and society to be interdependent and of service, you might not have access to the things you need in your times of vulnerability.

I think it’s very appropriate to what I want to tell you today, because it’s why Almonte has become my home since 1981. I have felt the daily care and concern for the future. It’s different in Almonte. It’s developed in a manner that’s consistent with what I see in the Maasai and the question of the greeting.

This presentation was prepared by me at 3:00 a.m. this morning. There is a reason for that. Some of you know me personally, and you know what an incredibly positive journey I have been on since being diagnosed with cancer.

I have been filtering things so that they become meaningful to somebody else, to other people who have not had this experience themselves. From these notes, which are only eight pages, triple-spaced, I could talk for 10 hours about this community of Almonte and about the people who have supported me thus far and will continue to do so until the end.

On a personal note, if you hear a negative undertone anywhere in this presentation, it is an accident of a mind. It is because it is becoming fogged. This afternoon is really tough for me mentally. If you hear any negativity, discount it. My heart is 100% positive and enlivened by the emotions, which are felt with joy and gratitude.

“If you don’t acculturate the young people and society to be interdependent and of service, you get none of the things you require and need in your times of vulnerability.”

Now I was asked to introduce myself, and rightly so, because anything I’ve done professionally – the fact that I was doing A, B, C in the past, giving hundreds of speeches per year – doesn’t help here. This is the toughest one.

What makes this conversation – and it is a conversation – is that I’d really like you to interrupt and ask a question when it is appropriate for you to ask that question. It is the equivalent of you saying, “Are the children well?” This matters to me. I want to understand you.

What makes this a unique case? Well, it is a case of one, me. You can diagnose this old guy on your own. I am a single person. Most people who turn to hospice turn because spouses and family members need the support as they go through the process of watching somebody they care about die.

By the way, you will not hear, as much as I can help it, euphemisms come out of my mouth. You will not hear of someone “passing” here. You die – that’s it. Euphemisms keep us from focusing on what really matters; and we have a culture that will talk at length about children and how much goes into that end of life, but we never want to talk about the other side.

I knew this day was coming since March 11, 1948. I didn’t know how and when I would die, I just knew that one day I would. There it is.

The second reason I’d like to talk about this is I’ve had the luxury of time – and it is a luxury. To be told you have cancer and you have four to six months (now down to one), it gives me time to say thank you, and to not do all of the things that my head says I have to. It is lovely to see my lawyer here, because she took care of the logistics around death and dying in the first week after I received the terminal diagnosis. Now I can speak from the heart, which is the only thing that matters to me. It really is.

As I said, I’m a case of one. I’m a single person, and I’m male. Usually there are people who surround you during times of illness, such as a spouse, who provides support and helps arrange for care. I’m very clear about how I want to leave this earth. I needed to find the people who would help me get there in the manner that I chose, not in the manner in which they wished to impose upon me. Therein lies a very nice bridge in this community.

I knew Hub Hospice existed, but I had a completely false image of what it was. I thought it was bricks and mortar, and they parked me in there, and I’d live my last days there. It’s a far more intelligent system than that, for which I am grateful. It is just what I need. I want a chance to express my gratitude, to be able to say “Thank you.” I want a chance to encourage the development of this model of care further in ways that really are meaningful not only to me, but to the family I choose to define for myself.

The other thing that this journey has taught me is that with the help of the volunteers that I have – and I have unbelievable volunteers, they’re really friends on call; that’s the way I can describe them – the experience that you get, through no other way than by doing what they do, is not an intellectual exercise but very much an emotional one. From my point of view, because I’ve had the luxury of time and I have a very clear vision of how I want to leave, I could ask for what I wanted clearly.

“Euphemisms [about death] keep us from focusing on what really matters, and we have a culture that will talk about children and how much goes into the beginning of life, but we never want to talk about the other end of life.”

Choosing Love and Life

Now I want to talk about why that matters. Just because I’ve been diagnosed with terminal cancer doesn’t mean that I choose to stop living! I wanted to find volunteers who, if asked, would help me live – fully – not watch me die and hold my hand while I do it. That time will come, but that is not what I want right now. As some of you know, art and photography is a lifeline for me. It is a meditation. It is everything that feeds my soul. I wanted two people who, if I said, “Could you drive me somewhere,” would say, “What time?” And they both have.

If I need to go downtown because I want to get something from the store, even though I’m weakening, “What time and when?” You know, just getting that opportunity to nourish that little piece of me has done more to enliven me. These days are getting harder and harder, but both of the volunteers are interested in what I’m doing, so the conversations become real and not sort of passing time.

When I was clear in asking for what I wanted, they were able to respond in a manner that works for them and works for me, and I tell you, it is what keeps me going every day. Every day is a surprise and they’re part of it somehow. Whether it is anticipating the next visit, arranging the next visit or outlining what we might do – and it might have to change on that day because I’m not up to it – that possibility is so vital to me.

Life can be just two emotions: fear and love. The moment I got the diagnosis, I chose the latter. It could be morbid. Ultimately for me, choosing that was probably the wisest thing I could do because it led to an increased sense of spirit. The number of people who have texted me and emailed me and said, “You’re showing courage doing that.” I said, “There’s no courage involved. It is what I want.” It is who I am. Why should I change that?

Let me switch tracks for a minute. Some of you know that I used to work for the Vanier Institute of the Family as Co-Director with Bob Glossop: an incredible 30-year history. I thought a number of things had changed over those years, but either we haven’t perceived them or if we did perceive them, we have chosen to ignore them at our peril.

We’re making assumptions at the level of public policy when it comes to care, possibly at local policy, in the service sector, about who is home to look after people – anybody – and provide the care they need. If you think about families becoming smaller and the demands of the economy, a need has been created for community groups like Hub Hospice. This evolution in our families and communities wasn’t sudden.

These are changes that are continuing. The first institution in society that reacts to change is never government, it is never our public institutions – it is always family. If you can’t make ends meet at the end of the month, you do one thing and one thing only, you send another member of the family out to work. How many double-income families do we have here? A lot of them. Who is home to provide care? Grandparents now are active, and they are not necessarily available to provide care.

Finally, families in the 1940s had on average five people in the household, but this has since fallen to three and it continues to fall. For many single people, there’s really nobody available to provide care.

If you look at mobility rates (how often people move), 50% of Canadians move every five years between cities, actually between streets, cities, provinces, countries. Try that with a bush and see how long it survives. When there is no one, who do you call when you’re told you’re terminally ill? Who?

Well, my family is no different. I have one sister who lives five hours away and one son who has five children under 11 years of age. So the question is, how do I arrange for the things that I know I would need, when I know I want them in a particular manner so that I don’t become a victim of cancer?

In my case, I learned about Hub Hospice services that were available in in my community by accident. That’s why I offered to make this presentation: to help others learn about the exemplary services available. I heard about the hospice service and how it works; I chose to reach out and make contact because, for me, it was an element of hope.

“Life can be summed up in two emotions: fear and love. The moment I got the diagnosis, I chose the latter.”

Getting the News: “It’s Terminal”

I am going to stop here for a moment and describe what it was like to get the news that you have a terminal illness.

In April 2015, I was diagnosed with throat cancer. The oncologists in the medical system in general were superbly amazing. Everyone I met through my treatment showed me care and compassion.

The compassion part is what I was looking for. I don’t expect it from the medical system, as well organized as it is. This isn’t a blame game; there are simply too many patients, too many sick people, too many fears. There’s got to be some middle ground to transition to the human side. Then when you try to invoke it from the medical system, of course, you get their impatience, and I understand it. However, when you really need the health care system, it really comes through for you and there’s nothing better.

I was standing in the Mill Street Bookstore, talking to Mary (the store owner) when my cellphone rang. It was my family physician, who had received the radiology report. He asked if I could talk. It is not very often that you get a doctor calling you directly, and also hard to get them back on the phone, so I said yes as I stood in front of Mary. He told me that my cancer had metastasized and was terminal.

Mary knew something was serious, and she looked at my face with care and compassion. That look kept me grounded. Without knowing the details, she understood that something real and important had happened, so right there – in the community – that first moment of human connection made a difference that day and has ever since.

I thanked my doctor and I was taken aback for no more than 30 seconds – literally. It didn’t take any longer than that. It was: This is it… this is the road I am now on.

The metaphor I have used to describe this journey is my life being a run-on sentence. I do what I do, and I don’t give it much thought, because it is who I am. Then suddenly I got that call and it was like somebody put a comma in that sentence. That’s what I felt. In seeing that comma – which was my diagnosis – I was at a point of choice: What am I going to do after the comma and before the period? The choice took a nanosecond. It was that clear.

I then walked out the door and ran into a friend whom I knew through photography. He said, “You look a little white.” I said, “Well, I just got this news…” My fear of cancer just washed away. That point of choice was vital for me. For somebody else, it might take longer. But here was my concern, which had nothing to do with dying, end of life or my physical well-being: This will be a huge strain on my family. How do I manage that?That was my first reaction.

My second concern was that our health care system, as good as it is, has become so complicated. I had no idea where to start. I needed a navigator from the point of view of the system. I knew I needed help. But what I also knew was, and in my state, I’m a very emotional man by nature. I have no fears of expressing it. You’ll see me cry somewhere along the way. I’m very comfortable with that. But I was also concerned about where I would get the emotional support I needed without overtaxing the people in my life… my small, busy family… the people who care about me… the people who will be caring for me? Yet I knew that, if I was going to get through this with the joy and the sense of purpose that I have, I would need a circle of support around me.

“My life has been a run-on sentence… Then suddenly I got that call and somebody put a comma in that sentence… What am I going to do after the comma and before the period?”

What that led to was a question of how one prepares for death long before one faces it. I lived with depression throughout my adult life. Medication wasn’t the solution for me. So instead I took a year-long sabbatical and focused on developing a spiritual approach to my life, a life that you see in my photographs. My photographs are based on the beauty I see and the joy it brings to me. I share my images so they bring joy to others. It is a short way of saying how I have lived the last 20 years. I’ve chosen to live with daily meditations, focusing on meaning, creating meaningful relationships or receiving meaning by mentoring a sincere group of photographers who have given me purpose and joy in my life.

Jamming on the Brakes

I will give you some advice: don’t get involved in the love/fear debate, but develop an attitude and a set of actions that really do invite you in and provide clarity of what matters. My life was moving forward like everyone else’s, at considerable speed, when with that phone call from my doctor, it was like somebody had jammed on the brakes: the whole world continued to move forward, and I was right there at the windshield, stopped. It felt like I was pressed against this windshield and that I was alone. It is the aloneness that got me, and the burden that I’d become on others.

I can’t describe the aloneness because it is not loneliness. It is a wholeness that haunts. You want to say something to somebody because they mattered and yet you haven’t got the voice. You haven’t got the capacity to articulate something that is life-giving. It is a very strange feeling. Then I started to think, What if I were married? All of everything I’ve encountered as the patient has been absolutely superb. Absolutely superb! If I need something, I can probably figure it out. I can see if I can find somebody who can point me in the right direction.

I thought for that moment, at the windshield, that what I’m feeling has got to be better than what a spouse or family member is feeling, watching their relationship of a lifetime just fade into the haze in front of their eyes. Feeling that aloneness and that incapacity to make a significant difference beyond a certain point, I just couldn’t imagine.

 

Hub Hospice in Almonte: Authentic Kindness

When I first learned about Hub Hospice in Almonte and its unique approach to hospice at home, I thought, Somebody really thought this through. They understood the experience of the family caregiver; they started there in the family and the home. They understood the patient, but they also understood the spouse.

I cannot imagine the conversations around the boardroom table that developed the vision that created this unique hospice model. Having negotiated many a vision and tried to implement them, they can be a nightmare! There are competing interests, there are competing visions, there are the big bricks-and-mortar people, there are the little keep-it-simple people… there is a wide range. It is a palette. To find one that actually feels right and to fulfill it, I just thought, Wow.

What is unique about Hub Hospice is its focus on family. First of all, it started from the position of the spouse. Second, whatever arguments, and I’m sure they weren’t pleasant, that derived from this model, delivered so consistently… the compromise is elegant. I can’t say it any other way. There is a volunteer perspective that I now have come to respect and give that is based on kindness. It is authentic. It is a kindness that provides a very human foundation for what I’m going through and what I imagine a spouse would be going through.

I have two volunteers. Each has a personal style. What amazes me is how complementary they are. Let me describe to you a meeting that I convened in my home a few months ago. I brought my care team together to plan and prepare for my end-of-life journey and the living I want to do along the way. My team included my palliative care nurse (a hero in my books); my son; my power of attorney for personal care, who is the person who ultimately makes all of the decisions for me when I can’t; and my Hub Hospice volunteers. I sat at the head of my dining room table, and I felt like I was the chairman of my destiny because of who was present. When I got emotional – and I did because there was such kindness at that table – whenever an issue arose, the appropriate person had a contribution to make. The team had only respect for me and my wishes. That’s when the tears started.

To have a team, who didn’t know each other before the meeting, set aside the things that usually divide a group and focus on developing the care plan – and occasionally have a hand reach out and just hold mine with no words – that comes from this notion that we start from: kindness.

There were no competing interests; I trusted everything that was communicated. I had confidence that the journey would be as I wanted it to be, and everyone around the table agreed to work together to see that it did. That they could work so coherently together so quickly speaks volumes to everyone in the room. The way they treated my son, trying to hear and elicit his concerns, that was probably the most touching moment for me. In terms of how hospice acted, they were mandated to support me and my family in this manner.

“There is a volunteer perspective that I now have come to respect and give that is based on kindness. It is authentic.”

My biggest joy was when I first met with the staff person and, subsequently, my volunteers. One of the first questions in the interview that I asked with the volunteers and my staff person was who they would talk to and who they wouldn’t talk to. The response I got just made my heart burst, because they understood completely the modernity of life. Family is like an elastic band: it stretches, it contracts, depending on the economy, the culture and a variety of other things. For many now, particularly the young, they create their own tribe or family. They really do, and I have as well.

I can’t tell you how appreciative I am of the flexibility that allows me to define who is intimate, equal to a blood tie, because some blood ties are very messy.

I have assurance that the right people are looking out for me when I define who is “family” and who needs to be provided with the information. To have an organization willing to do that, it is what I want now – and that is what they provide. I have alluded to the fact that, for me, palliative care is not about death and dying: it’s about finding a group that will support life and living.

The Importance of Listening

I’ve just told you how much family means to me in terms of not just being limited by blood. Why? Because that’s how we form lasting relationships in this culture at this time. I certainly have. The reason I cherish the people who are part of the hospice, and I mean cherish, is because when I talk to them, first of all, they listen. They have probably the most acutely developed sense of being rather than doing. It is a rare commodity. Everybody shows up on my door wanting to do something.

What amazes me is that each Hub Hospice volunteer whom I have dealt with is perceptive enough to recognize that, and to make the space to be quiet when it’s necessary, to laugh when it’s important and to cry when it matters. When I say palliative care is what supports life and living, the people at Hub Hospice do it. When I ask for a perspective, a point of view because of their experience, I get clear responses to consider.

“Palliative care is not about death and dying: it’s about finding a group that will support life and living.”

I don’t get told what to do, I don’t get told how to do it. To have a palette – and some of it I refer to as my emotional guides, some of it I refer to as a topographical map that helps me navigate my day and the care I receive because I have no idea how to manage it all… I have never done this before! – to have people who have experience and the human side of attentiveness is what I cherish every day.

“Defining end of life care is… to make the space to be quiet when it’s necessary, to laugh when it’s important and to cry when it matters.”

Now I am going to change to another part of this: the palliative part of it that I’ve come to understand, unfortunately. You notice when you’re around young families who want to talk about education or you’re around young teachers who want to talk about education, they never talk about learning. They talk about money and unions and the board of education, but not learning.

It is the same when you try to form an organization of any kind. You define your end, but then you get a hundred reasons why you can’t do it. Maybe it’s that you don’t have enough money, that you have to go through this step, that step.

A Different Model of Palliative Care

The way Hub Hospice is modelled is brilliant. There is nothing that can’t be done because they’re not depending on grants or bricks and mortar – they are dependent on volunteers, who work to ensure that I’m where I want to be.

Where do I want to be? In my home with the things I adore, with the things that make me alive. To be removed from my home to go to a “hospice” or “day program” in the cold or extreme heat would be uncomfortable. But these wise people have adopted a system that is flexible, responsive and allows me to stay at home. What I’ve come to appreciate is that Hub Hospice has a model that supports human needs. They’re based on kindness, not on the currency of efficiency.

Each cancer patient is complex and receives care from a well-developed medical model in our publicly funded health care system. From my experience, all the techs, all the doctors, all the nurses are fantastic, but it’s patient-focused. Hospice is all about support and guidance for the family – the family as defined by the patient.

For families, it is asking the right questions at the right time. When I need help, whom do I call? Will it be given freely? Will it be given begrudgingly or generously? Those are the things that matter. Support for those who care is vital, and palliative care supports dying with dignity and grace, peace and joy, and love and care. That’s it for me.

Palliative care speaks to and supports those who care for the patients and who ultimately ease the anxiety of the patients – the family. As I’ve told you, my life has been a run-on sentence – and then comes the comma, a terminal diagnosis. I’m moving toward the period and the end of my journey is coming. I’ve chosen a path and I’m choosing to speak about it. I’m not battling anything. I’ve chosen to live fully until I can no longer do so with or without support.

Making Images Is Like Palliative Care

When I make an image, and most of you will know and have seen my images, I always stand behind the camera and the tripod for 45 minutes or more before I make the image, because that time is an invitation. A slight shift from here to there or from this position to that position changes everything. The whole interpretation changes – the whole meaning changes – the whole experience changes. It is that focus, positioning and patience that is crucial.

Hub Hospice is like the photographer in me. The organization and the volunteers stand there observing, waiting for 45 minutes or more to see if they need to make a slight adjustment in order to make a big difference for the patient and their family. I can’t think of a better metaphor, because, in my experience, it’s the small gestures that make the biggest difference.

“Palliative care speaks to and supports those who care for the patients and who ultimately ease the anxiety of the patients – the family.”

In this day and age, it is very hard to find volunteers who will do anything more than once – forget about doing something more than once, twice, three times over a month. To get somebody to commit for an indefinite period of time to care for someone is challenging, and for someone they don’t know seems impossible. Making that commitment is heroic on the part of the volunteer and speaks volumes about the organization. Volunteers don’t make their commitment alone; I find it incredible that there are families in this community that will support the volunteers to sacrifice a good part of their lives for an extended and indefinite period of time. That is a demonstration of how the community supports one another directly and indirectly, a fact I don’t take for granted for a minute. It is to be celebrated and to be honoured.

It leads to a more potent question: how did Almonte develop this kind of caring and compassionate culture? These things don’t happen by accident. I chose to live in Almonte in 1981 because it is a community I felt I wanted to live in. Partly because community matters to me and I really have a sense of what community means to me. I can honestly say Almonte is my home. Having lived in different countries, having lived in different cities, Almonte is my home. It is partly because of its scale, but also because of who chooses to live here, its history and its traditions.

This is what has made this experience so enlivening. It is not an accident, for me, that the hospice was therefore created as it was. First of all, you have a community that has a long history: where a lot of people didn’t move every five years, where families have deep roots, where those roots are visible and talked about. Stories are shared. When somebody like me comes in where families are scattered all over the world, I see them as kind of memories. Somebody mentions a name and somebody at the table will spend the next 20 minutes telling the family history. The fact that people here tell stories, stories about their history, their families for generations, that’s what it’s meant.

It’s not always cute, it’s not always nice and pleasant, but the roots are deep and they’re real. I, the city guy, don’t have to come in and do anything. I just have to absorb tradition. This is a traditionally rich area having large families. They are still in the area. They still talk to each other. They still make contributions. It is the stories we tell each other that remind us that we live in a community that has provided a solid foundation for places like Hub Hospice.

We have an incredibly well-educated community; the people who come from afar tend to want to stay. They’re here to absorb this tradition, understand it, feel it and see how modern culture can be fitted in so that Almonte keeps up but doesn’t lose its strength of tradition. That’s how I see the palliative care process having been formed. People at that table remembering how it used to be done, recognizing it can’t be done that way, but rather how it can be adapted within a legal framework and within compassionate frameworks. It has that think and feel. It is not make-believe. It is why I like what they’ve done with Hub Hospice.

“Almonte is my home. It is partly because of its scale, but also because of who chooses to live here, its history and its traditions.”

I may be making all of this up because this is a case of one, and you can’t generalize. But from a case of one, I’ll tell you it’s made a huge difference.

Today my state of mind may be very fogged, but my state of heart is clear as crystal. It really is. My state of emotions is high and comfortable. The emotions are about gratitude and appreciation for our community that is responsive and chooses to be caring and compassionate. I no longer worry. It has become a conversation that is evolving as it needs to, with comfort, dignity, respect, tenderness and I can’t think of enough words to express how it feels.

The decision I made to come here in 1981 is the best decision I ever made. The decision to say this is my home and to really believe it is the best decision I ever made. I can’t imagine going along this journey any other way but with the joy and gratitude that you’ve afforded me. To the board, to the staff, to the volunteers at Hub Hospice, I thank you. You’ve made the difference. Not just intellectually, but to the heart and to the soul.

I thank you for listening.


Alan died on December 20, 2017, a few weeks after he gave this presentation at Hub Hospice Palliative Care. Along with family and friends, his Hub Hospice volunteers were with him as he took the last few steps on his journey. In his final days, every time he woke up he would say, “I am so lucky, I am so blessed, I am so grateful.”

Published on April 3, 2018 with permission from Alan’s family (Marilyn Mirabelli and Michel Mirabelli)

Photo (top of page) by Peter Waiser 

In Focus: Senior Caregivers in Canada

Caregiving is a part of family life, and family caregivers play a crucial role in providing, arranging and sometimes paying for care for their loved ones. While there has been progress over the past decade in recognizing and celebrating the importance and impact of Canada’s 8.1 million caregivers, senior caregivers are often overlooked in the narrative despite accounting for more than 1 in 8 caregivers in 2012.1

Senior caregivers make unique and valuable contributions to family caregiving in Canada, though they can also have unique needs resulting from their advanced age. It can be a complex caregiving experience, as many provide care while managing their other responsibilities in workplaces and communities across the country (sometimes while receiving care themselves).

Seniors make significant contributions to caregiving in Canada2

  • In 2012, nearly 1 million seniors in Canada (966,000) provided care to a family member or friend with a long-term health condition, disability or aging need (12% of all caregivers).3
  • In 2012, senior caregivers were most likely to spend the longest hours per week providing care, partly due to their higher likelihood of caring for a spouse (spouses typically require greater time commitments for care).4
    • Nearly one-quarter (23%) of senior caregivers provided 20 or more hours of care per week, approximately twice the rate of carers aged 45 to 54 (13%) and young carers aged 15 to 24 (10%).5

Many senior caregivers balance their caregiving with paid work and volunteering6

  • In 2017, 14.2% of seniors were in the paid labour market (18.7% of men, 10.4% of women), more than double the rate in 2000 (6%).7
  • In 2015, one in five (19.8%) seniors in Canada (1.1 million) worked at some point – nearly twice the rate in 1995 (10.1%). Men were more likely than women to report having worked at some point that year (25.7% and 14.6%, respectively).8
  • In 2013, nearly 3 in 10 seniors aged 75 and older (27%) were volunteers.9

Caregiving can have an impact on the well-being of senior carers

  • Research shows that caregiving can have a positive impact on the well-being of caregivers themselves, providing them with a sense of personal growth and renewed meaning and purpose in life, assurance and greater awareness of the care being provided, and a sense of “giving back” to someone who has cared for them.10
  • Caregiving can also have a negative impact on the well-being of caregivers. Nearly 3 in 10 people (28%) who provided care in 2012 said that they found it “somewhat or very” stressful, and 1 in 5 (19%) said that their “physical and emotional health suffered” as a result of their caregiving responsibilities.11

The Vanier Institute of the Family is a national, independent, charitable organization dedicated to understanding the diversity and complexity of families and the reality of family life in Canada. The Institute offers access to a range of publications, research initiatives, presentations and social media content to enhance the national understanding of how families interact with, have an impact on and are affected by social, economic, environmental and cultural forces.

 

Notes


  1. Maire Sinha, “Portrait of Caregivers, 2012,” Spotlight on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (September 2013). Link: .
  2. Learn more in A Snapshot of Family Caregiving and Work in Canada.
  3. Sinha, 2012.
  4. Ibid.
  5. Ibid.
  6. Learn more in and .
  7. Statistics Canada, Labour force characteristics by sex and detailed age group, annual (x 1,000) (CANSIM Table 282-0002), page last updated February 26, 2019. Link:.
  8. Statistics Canada, “Census in Brief: Working Seniors in Canada,” Analytical Products, 2016 Census, Statistics Canada catalogue no. 98-200-X-2016027 (November 29, 2017). Link:.
  9. Learn more in Facts and Stats: Volunteering in Canada.
  10. American Psychological Association, “Positive Aspects of Caregiving,” Public Interest Directorate Reports (January 2011). Link:.
  11. Sinha, 2012.

 

Families in Canada Interactive Timeline

Today’s society and today’s families would have been difficult to imagine, let alone understand, a half-century ago. Data shows that families and family life in Canada have become increasingly diverse and complex across generations – a reality highlighted when one looks at broader trends over time.

But even as families evolve, their impact over the years has remained constant. This is due to the many functions and roles they perform for individuals and communities alike – families are, have been and will continue to be the cornerstone of our society, the engine of our economy and at the centre of our hearts.

Learn about the evolution of families in Canada over the past half-century with our Families in Canada Interactive Timeline – a online resource from the Vanier Institute that highlights trends on diverse topics such as motherhood and fatherhood, family relationships, living arrangements, children and seniors, work–life, health and well-being, family care and much more.

View the Families in Canada Interactive Timeline.*

 

Full topic list:

  • Motherhood
    o Maternal age
    o Fertility
    o Labour force participation
    o Education
    o Stay-at-home moms
  • Fatherhood
    o Family relationships
    o Employment
    o Care and unpaid work
    o Work–life
  • Demographics
    o Life expectancy
    o Seniors and elders
    o Children and youth
    o Immigrant families
  • Families and Households
    o Family structure
    o Family finances
    o Household size
    o Housing
  • Health and Well-Being
    o Babies and birth
    o Health
    o Life expectancy
    o Death and dying

View all source information for all statistics in Families in Canada Interactive Timeline.

 

* Note: The timeline is accessible only via desktop computer and does not work on smartphones.


Published February 8, 2018

Facts and Stats: Families and Mental Health in Canada

At some point, most families find themselves affected by mental illness, whether it’s because a family member (or multiple family members) personally experiences a mental health condition or because they’re providing care to someone else – or both. With appropriate treatment and support, however, most people who experience a mental illness will recover,1 and families often play an important role in providing, arranging or helping pay for care.

Our new fact sheet provides an overview of families and mental health in Canada, including rates of mental health conditions within families, factors that contribute to mental illnesses and the roles family members can play in mental health treatment.

.

Notes


  1. Centre for Addiction and Mental Health, Mental Illness and Addiction: Facts and Statistics (n.d.), accessed September 20, 2017. Link: .

Health Care Experiences of Military Families of Children with Autism


Heidi Cramm, Ph.D.

Military families in Canada are highly mobile, relocating three to four times more often than their civilian counterparts.1 This mobility has been found to complicate access to health care for these families, most of whom live off-base (85%, compared with only 20% in the mid-1990s) and rely on provincial and territorial civilian health care systems. This has an acute impact on the 8.2% of military families who have children with special needs, including those living with Autism Spectrum Disorder (ASD).2

Autism Spectrum Disorder (ASD) is a common neurodevelopmental disorder with an estimated prevalence of 1 in 68 children. While this condition primarily affects social communication, often making it difficult for people living with ASD to share enjoyment or emotional experiences with others, it has a range of symptoms and associated behaviours:

  • Approximately 25% of people living with ASD are non-verbal, unable to use or respond to non-verbal communication (or are otherwise delayed in its use), such as pointing, gesturing and so forth, especially to indicate something of interest.
  • People with ASD often have difficulties understanding abstract language/communication such as metaphors, sarcasm, colloquialisms and jokes.
  • Repetitive behaviours, such as rocking, hand-flapping, finger movements and so forth, are common among people with ASD.
  • People living with ASD are often highly sensitive to change, and they are “creatures of habit.”
  • Most people with ASD have a range of sensory dysfunctions that vary widely (e.g., extreme sensitivities to noise, touch, smells, tastes, etc.) while many also exhibit a high pain threshold.
  • Some children with ASD have exceptional abilities in music, visual and academic skills.
  • In addition, up to 90% of children with ASD will have a co-existing medical and/or psycho-behavioural disorder, such as ADHD, anxiety, sleep disorders, feeding disorders, seizures, intellectual disability and gastro-intestinal disorders.

Early Intervention Supports Treatment for Children with ASD

Research suggests that early intervention is most impactful to the prognosis of ASD,3 and it can enhance the development of learning, communication and social skills for people living with the condition. Autism is typically diagnosed in early childhood, even as early as 18 to 24 months of age.

In many provinces, families experience long waiting times when seeking early diagnosis and/or intervention due to a “bottlenecking” of access to appropriate diagnostic centres – delays that can sometimes exceed two years.

Between 21% and 27% of military families do not have a family doctor, compared with 15% among the general population.4 Since many health services and treatments are accessed through family doctors, this discrepancy means that military families can have a harder time accessing services for children with special needs, including those with ASD. With each move, families who are moving toward the top of wait-lists for services find themselves back at the bottom.

Since many health services and treatments are accessed through family doctors, this discrepancy means that military families can have a harder time accessing services for children with special needs.

Exploring the Experiences of Military Families of Children with ASD

In a recent qualitative study, military families who have a child with ASD were interviewed to explore and describe their experiences navigating health care systems on behalf of their children.5

Many of these families reported that they had a hard time getting their child’s condition noticed, validated and medically diagnosed. Families generally found it difficult to get the assessment for ASD, and this delay in assessment and subsequent diagnosis meant that, for many, their access to intervention services was held up significantly.

One parent explained that their family experienced delays in accessing care for their son after moving because many of the programs available in their new community were for people living with autism who have a diagnosis. Since the family didn’t realize that they would need to have the diagnosis in hand when they sought care in their new neighbourhood, they went ahead and moved without having one, only to find that their son couldn’t access these programs as a result. Access to care for their child was delayed by months.

Difficulties accessing care can have an impact on family finances. Frustrated with wait-lists and the implications of delayed services for their child’s long-term development, many families opted instead to pay directly for private assessment services. One participant described making the decision to seek out private assessment and intervention because the wait-lists would exceed their posting tenure: “We paid privately… because the wait-list was too long. Once we had that diagnosis, [a community organization] put us on a wait-list for [Applied Behaviour Analysis] therapy. That wait-list is two years long. So we were never going to see the end of that wait-list either. So… we started paying privately for him.”

Frustrated with wait-lists and the implications of delayed services for their child’s long-term development, many families opted instead to pay directly for private assessment services.

At times, families waiting for care said they wound up moving again before their child’s name made it to the top of the local wait-list. For some families, service access was within sight, and then another posting forced them to move and start all over again. One participant shared that after waiting for some time for their child to get into a program, they finally received confirmation from their intervention team that the child would be able to start in September – which was of little help to them at that point, since they were going to be moving again in July.

With services varying widely from province to province (along with the corresponding eligibility and funding), some families reported consternation over losing services that they had previously had access to but were simply not available in their new location. One participant described this experience, “We realized the school [in the current province] didn’t offer the same things that they do in [the previous province]… there was nothing they could do…”

These variations also exist from region to region within the same province. For example, another participant described having to remove her child from a highly beneficial education program because they were moving, but then found they were unable to place him in a similar program in the new city because the program didn’t exist there (even though they were in the same province). Families in several other provinces described similar circumstances when moving interprovincially or intraprovincially.

Ongoing Pursuit of Health Care Affects Family Well-Being

While military families are highly resilient, difficulty accessing health care services for their children with ASD can have an impact on their own and their family’s well-being. Participants in the study commonly described frustration and confusion over the daunting tasks of sorting out how to get their children whatever services were possible. One participant described “bursting into tears” after finally getting to the top of a wait-list for intervention only to find the service did not meet expectations.

Some participants described having to draw on support from extended family to help care for their children. One participant said her parents retired and moved to the family’s current posting to assist because “they knew [our son] needed more help and we needed a break.” Others lamented the fact that extended family were too far away to really provide any assistance and were “just not able to be there.” Participants’ experiences with Military Family Resource Centres (MFRCs) were diverse, as the available services varied from base to base.

Parents often experienced strain on their relationships with their spouse or partner as their efforts to find caregiver supports and develop local networks can be complicated by training exercises, deployments and postings. As a result, hard choices are sometimes made related to whether or not a new posting, which comes with career opportunity, is feasible given the health care implications for the child with ASD.

Parents often experienced strain on their relationships with their spouse or partner as their efforts to find caregiver supports and develop local networks can be complicated by training exercises, deployments and postings.

Some participants described the Canadian Armed Forces (CAF) member making career decisions such as changing trades or requesting a specific posting for the benefit of the child, even though it could have an impact on their career trajectory and, by extension, the family as a whole. One participant said their family would consider living apart (i.e., imposed restriction) if it meant the child would receive the services needed, even though this would create a protracted separation that could have a significantly negative impact on the family as a whole.

In some military families, a civilian spouse may need to limit their involvement in the paid labour force to offset the caregiving requirements of the child. Such “trade-offs” are common in military families, with more than half (51%) of surveyed CAF spouses reporting that they have made some career sacrifices because of their partner’s military service, according to a 2009 study from the Director General Military Personnel Research and Analysis (DGMPRA). This limited workforce involvement can further constrain family finances that may be needed to pay for private services for their children. This can have a greater impact on dual-service families (families with two serving CAF members).

Military Families Express Desire for Navigation Support

Some military family members identified a few ways that could be considered to enhance the support for other military families who have children with ASD. Many expressed the desire to connect with other military families who are already at the new location to help map out options for how to access ASD-related services; some wanted this to be a formalized opportunity whereas others felt it would be important that it happen outside of official channels.

Many [families] expressed the desire to connect with other military families who are already at the new location to help map out options for how to access ASD-related services.

Opportunities to provide augmented and current information for families were also discussed, with some expressing a desire for a single point person who can help them navigate across school, community and health services. However, one participant indicated this type of formalized approach could result in parents receiving “filtered information” without any indication of how effective the services really are.

This qualitative study raised some important issues, but there is much left to learn. How might some of these opportunities be realized within existing formal and informal networks for incoming families? How could the disruptions and delays to health care access that military families report be reduced across provinces? What, if any, kinds of options might there be to offset the financial implications for parents when publicly funded services are absent or inaccessible? Are the differences for those who move within provinces similar to those who move across provinces? Exploring these questions through further research – with the insights and participation of families – will be key in supporting Canada’s diverse military families.

 

Dr. Heidi Cramm is the Interim Co-Scientific Director at the Canadian Institute for Military and Veteran Health Research (CIMVHR) and recipient of the 2016 Colonel Russell Mann Military Family Health Research Award.

 

Notes


  1. Heidi Cramm et al., “Making Military Families in Canada A Research Priority,” Journal of Military, Veteran and Family Health 1:2 (November 2015). Link: http://bit.ly/2zx46G1.
  2. Learn more with A Snapshot of Military and Veteran Families in Canada. Link: https://bit.ly/2fM3xmP.
  3. Geraldine Dawson, “Early Behavioral Intervention, Brain Plasticity, and the Prevention of Autism Spectrum Disorder,” Development and Psychopathology 20:03 (July 7, 2008). Link: 
  4. Nathan Battams, “A Snapshot of Military and Veteran Families in Canada,” Statistical Snapshots (November 2016). Link: https://bit.ly/2fM3xmP.
  5. Most of the families who participated in the study were married, and one-third of them had both parents serving in the Canadian Armed Forces (CAF). Most of the families represented serving members in the Regular Forces, primarily in the Army.

Grandparent Health and Family Well-Being

Rachel Margolis, Ph.D.

Canada’s 7.1 million grandparents and great-grandparents make unique, diverse and valuable contributions to families and society, serving as role models, nurturers, historians, sources of experiential knowledge and more. As with the general population, the grandparent population in Canada is aging rapidly, sparking some concern in the media and public discourse about the potential impact of this “grey tsunami.”

However, despite being older, data show that the health of grandparents has improved over the past 30 years. This trend can positively impact families, since healthy grandparents can have a higher capacity to contribute to family life and help younger generations manage family responsibilities such as child care and household finances.

Improving grandparent health enhances their capacity to contribute to family life and help younger generations manage family responsibilities.

Canada is aging, and so are its grandparents

The aging of the grandparent population mirrors broader population aging trends across the country. According to the most recent Census in 2016, 16.9% of Canada’s population are seniors, nearly double the share in 1981 (9.6%) and the highest proportion to date. This growth is expected to continue over the next several decades: projections show that nearly one-quarter (23%) of Canadians will be 65 or older by 2031. Furthermore, the oldest Canadians (aged 100 and over) are currently the fastest-growing age group: there were 8,200 centenarians in 2016 (up 41% since 2011), and projections from Statistics Canada show that this group is likely to reach nearly 40,000 by 2051.

In this context, it’s perhaps no surprise that the overall grandparent population is also aging. The share of grandparents who are seniors grew from 41% in 1985 to 53% in 2011, and the share of grandparents who are aged 80 and older has grown even faster, nearly doubling from 6.8% in 1985 to 13.5% in 2011.

Life expectancy increases fuel grandparent population aging

One of the underlying factors fuelling the aging of the grandparent population is the fact that Canadians are living longer. According to Statistics Canada, life expectancy at birth has continued to rise steadily, reaching 83.8 years for women and 79.6 years for men in 2011–2013. This represents an increase of about a decade over the past half-century, with women and men gaining 9.5 years and 11.2 years, respectively, since the years 1960–1962.

In addition, more people are reaching seniorhood than in the past because of mortality declines at ages below age 65. Data from Statistics Canada shows that the average share of female newborns who can expect to reach age 65 rose from 86% for those born in 1980–1982 to 92% for those born in 2011–2013, while this share increased from 75% to 87% for males during the same period.

People are also living longer as seniors, as reflected in ongoing increases in life expectancy at age 65 – a useful measure of the well-being of older populations since it excludes mortality for those who do not reach seniorhood. According to estimates from Statistics Canada, life expectancy at age 65 in 2011–2013 was 21.9 years for women and 19 years for men – up by 3 years and 4.4 years, respectively, from 1980 to 1982.

Delayed fertility contributes to the aging of the grandparent population since it increases the age of transitioning into grandparenthood.

Another contributing factor to the aging of grandparents is the fact that on average, women are having children at older ages than in the past – a fertility trend that increases the age of transitioning into grandparenthood. The average age of first-time mothers has risen steadily since 1970, from 23.7 to 28.8 years in 2013. The number of first-time mothers aged 40 and older has also grown, rising from 1,172 in 1993 to 3,648 in 2013 (+210%). As more women postpone childbearing until later in life, their transition to grandparenthood will also likely occur later. Today’s new grandparents are baby boomers, a generation in which many women delayed fertility for education and work experience. Their children are also having children later, and the fertility postponement of two generations together is influencing the pattern of later entry into grandparenthood.

Despite the aging of grandparents, grandparenthood accounts for a growing portion of many people’s lives. Even though people are becoming grandparents later, they are living longer as grandparents. The longer period of time spent in the grandparent role can extend opportunities for forming, nurturing and strengthening relationships with younger generations. According to my recent research, the average number of years that someone can expect to spent as a grandparent given today’s demography in Canada is 24.3 years for women and 18.9 years for men – that’s approximately two decades in which they can continue to play a major role in family life.

Despite being older, grandparents are healthier

In addition to living longer, data from the General Social Survey (GSS) suggest that grandparents in Canada today are far more likely to report living in good health than in the past. The proportion who rate their health as “good/very good/excellent” has increased from 70% in 1985 to 77% in 2011, while the share reporting “fair/poor” health has fallen from 31% to 23%. Overall, the odds of grandparents reporting that they are in good health are 44% higher in 2011 than in 1985.

A number of trends have contributed to health improvements among grandparents and older Canadians in general over the past half-century. There have been significant advances in public health that have facilitated disease prevention, detection and treatment. Among other factors, this has led to major reductions in deaths from circulatory system diseases (e.g. heart disease), which has been one of the biggest contributors to gains in life expectancy among men over the past half-century.

Another factor contributing to improvements in the health of grandparents in Canada is the rising educational attainment of this population. Research shows that education can improve health both in direct and indirect ways throughout life. Direct impacts can include enhancing one’s health literacy, knowledge, interactions with the health care system and patients’ ability and willingness to advocate for themselves when engaging with health care providers. Indirect impacts can include an increase in one’s resources (e.g. income) or occupational opportunities (e.g. being less likely to have a physically demanding and/or risky job, and more likely to have a job with health benefits).

Education has been associated with greater health, which is significant because the share of grandparents who have completed post-secondary education has more than tripled over the past three decades.

These are important factors to consider in the Canadian context, since the share of grandparents who have completed post-secondary education has more than tripled over the past three decades, from 13% in 1985 to nearly 40% by 2011.

Healthy grandparents can facilitate family well-being

Grandparent health can have a significant impact on families. When a grandparent (or multiple grandparents) is living in poor health, families are often the first to provide, manage or pay for care that supports their well-being. This is particularly true for senior grandparents receiving care at home; the Health Council of Canada estimates that families provide between 70% and 75% of all home care received by seniors in Canada.

Data from the 2012 GSS show that nearly 3 in 10 Canadians (28%) reported providing caregiving to a family member in the past year, and aging-related needs were the most commonly cited reason for care (reported by 28% of caregivers). Grandparents accounted for 13% of all Canadians who received care, and they were also the most frequent recipients of young caregivers’ (aged 15 to 29) assistance, 4 in 10 of whom cited a grandparent as the primary recipient.

While 95% of caregivers say they’re effectively coping with their caregiving responsibilities, research has found that in some contexts, it can have a negative impact on their well-being, career development and family finances. This can be particularly true for the three-quarters of caregivers who are also in the paid labour force, accounting for more than one-third of all working Canadians.

On the other hand, when grandparents are living in good health, families can benefit in a variety of ways. In addition to the fact that it means they are less likely to require caregiving assistance, they are also more likely to be able to make positive contributions to family life, such as providing child care and contributing to family finances.

Grandparents provide child care to younger generations

Many grandparents play an important role in caring for their grandchildren, which can help parents in the “middle generation” manage their child care and paid work responsibilities. A number of economic, social and environmental trends have converged in recent decades that have increased the significant contributions they make to families with regard to child care.

Many grandparents play an important role in caring for their grandchildren, which can help parents in the “middle generation” manage their child care and paid work responsibilities.

Over the past four decades, the share of dual-earner couples in Canada has increased; in 1976, 36% of couples with children included two earners, a rate that nearly doubled to 69% by 2014. In more than half of these couples (51%), both parents worked full-time, which means they were more likely to rely on non-parental care for their children. This is supported by data from the 2011 GSS: while nearly half (46%) of all parents reported relying on some type of child care for their children aged 14 years and younger in the past year, the rate was higher (71%) for dual-earner parents with children aged 0 to 4 and children aged 5 to 14 (49%).

The evolution in family structure and composition across generations has also contributed to more families relying on non-parental care for their children. The share of lone-parent families has increased significantly over the past 50 years, rising from 8.4% of all families in 1961 to approximately 16% in 2016. Data from the 2011 GSS show that nearly 6 in 10 lone parents of children aged 4 and under (58%) report that they rely on non-parental care.

Sometimes grandparents are solely responsible for raising their grandchildren when no middle (i.e. parent) generation is present. The 2011 GSS counted 51,000 of these “skip-generation families” in Canada, which was home to 12% of all grandparents who live with their grandchildren. Some of those who live with their children are more likely than others to live in skip-generation homes, such as people reporting a First Nations (28%), Métis (28%) or Inuit (18%) identity (compared with 11% among the non-Indigenous population).

Lastly, many parents may rely on grandparents for help with child care if they can’t find quality, regulated child care spaces in their communities. In 2014, the availability in regulated, centre-based child care spaces was only sufficient for one-quarter (24%) of children aged 5 and under across Canada. While this is a significant increase from 12% in 1992, it still leaves more than 3 in 4 children in this age group without an available regulated child care space. The availability of child care (or a lack thereof) is significant, since it can affect whether or not parents in coupled families can both participate in the paid labour market.

The cost of child care can also lead parents to turn to grandparents for child care assistance. This is particularly true for families living in urban centres. One 2015 study on the cost of child care in Canadian cities, which used administrative fee data and randomized phone surveys conducted with child care centres and homes, found that the highest rates in Canada were in Toronto, where estimates showed median unsubsidized rates of $1,736 per month for full-day infant care (under 18 months of age) and $1,325 for toddlers (aged 1½ to 3).

Grandparent involvement can enhance child well-being

Regardless of the reason grandparents spend time with their grandchildren, their involvement in family life can benefit the well-being of children. Studies have shown that grandparent involvement in family life is significantly associated with child well-being – in particular, it has been associated with greater prosocial behaviours and school involvement. The benefits aren’t limited to children, either, as other research has shown that close relationships between grandparents and grandchildren can have a positive impact on mental health for both. Among First Nations families, grandparents have also been found to play an important role in supporting cultural health and healing among younger generations.

Research shows that grandparent involvement in family life is significantly associated with child well-being, including greater prosocial behaviours and school involvement.

The broader context of improving grandparent health is good news for many families, since their better health can make it easier to participate in activities with children and grandchildren, and research shows that these interactions with younger kin can be more rewarding in this context.

Many grandparents play an important role in family finances

Improvements in grandparent health can also enhance their capacity to engage in paid work, which can improve their own finances and facilitate contributions to younger generations.

Improvements in grandparent health also enhance their capacity to engage in paid work, which can improve their own finances and facilitate contributions to younger generations.

While there isn’t much recent data on the employment patterns of grandparents in Canada per se, rising rates of working seniors have been well documented over the past several decades. Between 1997 and 2003, the paid labour force participation rate for seniors ranged between 6% and 7%, but this has steadily increased to around 14% in the first half of 2017 (and an even higher rate of 27% for those aged 65 to 69). Since approximately 8 in 10 seniors in Canada are grandparents, it’s clear that a growing number of grandparents are working today.

The potential for grandparents to contribute to family finances through paid work can be particularly important for the 8% who live in multi-generational households. According to data from the 2016 Census, this is the fastest-growing household type, having grown in number by nearly 38% between 2011 and 2016 to reach 403,810 homes. Similar to patterns found among skip-generation families, this living arrangement is more common among Indigenous and immigrant families, which both represent a growing share of families in Canada.

Skip-generation living arrangements are more common among Indigenous and immigrant families, which both represent a growing share of families in Canada.

Data from the 2011 GSS showed that among the 584,000 grandparents living in these types of homes, more than half (50.3%) reported that they have financial responsibilities in the household. Some were more likely than others to contribute to family finances: rates were significantly higher for those living in skip-generation households (80%) and multi-generational households with a lone-parent middle generation (75%).

Opportunities are growing for grandparent–family relationships

While the aging of the general and grandparent population in Canada presents certain societal challenges, notably with regard to community care, housing, transportation and income security, their rising life expectancy and improving health present growing opportunities for individuals and families. Many grandparents already help younger generations with fulfilling family responsibilities, such as child care and managing family finances, and this will continue in the years ahead – a positive side of the story that is often lost in narratives about the “grey tsunami.”

As the health of grandparents has improved over the years, many have been able to enjoy a greater quantity and quality of relationships with younger family members. As families adapt and react to their evolving social, economic and cultural contexts, they will continue to play an important – and likely growing – role in family life for generations to come.

 


Rachel Margolis, Ph.D., is an Associate Professor in the Department of Sociology at the University of Western Ontario.

 

All references and source information can be found in the PDF version of this article.

Published on September 5, 2017

A Snapshot of Men, Work and Family Relationships in Canada

Over the past half-century, fatherhood in Canada has evolved dramatically  as men across the country adapt and react to social, economic, cultural and environmental contexts. Throughout this period, men have had diverse employment experiences as they manage their multiple roles inside and outside the family home. These experiences have been impacted by a variety of factors, including (but not limited to) cultural norms and expectations, family status, disability and a variety of demographic characteristics, as well as women’s increased involvement in the paid labour force.

While many fathers in previous generations acted exclusively as “traditional” breadwinning father figures, modern fathers are increasingly likely to embrace caring roles and assume more household management responsibilities. In doing so, dads across Canada are renegotiating and reshaping the relationship between fatherhood and work.

Highlights include:

  • Men are less likely than in previous generations to fulfill a breadwinner role exclusively. In 2014, 79% of single-earner couple families with children included a breadwinning father, down from 96% in 1976.
  • Men account for a growing share of part-time workers. One-quarter (25%) of Canadians aged 25 to 54 who worked part-time in 2016 were men, up from 15% in 1986.
  • The proportion of never-married men is on the rise. In 2011, more than half (54%) of men in Canada aged 30 to 34 report never having been married, up from 15% in 1981.
  • Canada is home to many caregiving men. In 2012, nearly half (46%) of all caregivers in Canada were men, 11% of whom provided 20 or more hours per week of care.
  • Many men want to be stay-at-home parents. Nearly four in 10 (39%) surveyed men say they would prefer to be a stay-at-home parent.
  • Many men engage in household work and related activities. Nearly half (45%) of surveyed fathers in North America say they’re the “primary grocery shopper” in their household.
  • Flex at work can facilitate work–life balance. More than eight in 10 (81%) full-time working fathers who have a flexible schedule say they’re satisfied with their work–life balance, compared with 76% for those without flex.

 

This bilingual resource will be updated periodically as new data emerges. Sign up for our monthly e-newsletter to find out about updates, as well as other news about publications, projects and initiatives from the Vanier Institute.

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A Snapshot of Population Aging and Intergenerational Relationships in Canada

Canada’s population is aging rapidly, with a higher share of seniors than ever before. While this can present some societal challenges, it also provides growing opportunities for intergenerational relationships, since younger people have a greater likelihood of having more seniors and elders in their lives. Population aging has an impact not only on family relationships, but also on the social, economic, cultural and environmental contexts in which families live.

Using new statistics from the 2016 Census, explores the evolving demographic landscape across the country through a family lens. As the data shows, Canadians are getting older, and “seniorhood” is a growing life stage – a time when many of our parents, grandparents and great-grandparents are continuing to play important roles in our families, workplaces and communities.

Highlights include:

  • There are more seniors than ever before in Canada. More than 5.9 million people in Canada are aged 65 and older – up 20% since 2011 and now outnumbering children (5.8 million).
  • Nunavut is the youngest region in Canada. Children account for one-third (33%) of the population in Nunavut.
  • We’re more likely to become seniors than in the past. In 2012, nine in 10 Canadians were expected to reach age 65, up from six in 10 in 1925.
  • The number of multi-generational households is growing. In 2011, 1.3 million people in Canada lived in multi-generational homes, up 40% since 2001.
  • Working seniors are on the rise. The labour market participation rate of seniors more than doubled since 2000, from 6.0% to 14% in 2016.
  • Canada’s aging population affects family finances. An estimated $750 billion is expected to be transferred to Canadians aged 50 to 75 over the next decade.

 

This bilingual resource will be updated periodically as new data emerges. Sign up for our monthly e-newsletter to find out about updates, as well as other news about publications, projects and initiatives from the Vanier Institute.

Download from the Vanier Institute of the Family.

 

Infographic: Women, Caregiving and Work in Canada

Caregiving is a fact of life and a common family experience in Canada. At some point in their lives, most family members have provided – or will provide – care to a family member or friend with a long-term health condition, disability or aging need. However, Canadians don’t share a single narrative or caregiving experience, as social, economic, cultural and environmental factors shape who is expected to provide care, what kind of care they provide and the consequences of managing caregiving in addition to paid work.

And while the gap between women and men has lessened over the past generation, caregivers have historically been disproportionately women, and this remains true today. Research also shows that on average, women in Canada devote more time to caregiving tasks than men and are more likely to experience negative consequences as a result of their caregiving.

Our new infographic explores family caregiving and work in Canada with a focus on women.

Highlights include:

  • 30% of all women in Canada reported that they provided care in 2012.
  • Women aged 45 and older reported having spent an estimated 5.8 years providing care throughout their lives, compared with 3.4 years for men.
  • Women are significantly more likely than men to report having spent 20 hours or more per week providing care (17% and 11%, respectively).
  • An estimated 72% of women caregivers aged 45 to 65 in Canada are also employed.
  • Women reported experiencing a variety of employment impacts as a result of their caregiving responsibilities: 30% reported missing at least one full day of work; 6.4% retired early, quit or lost their paid job; and 4.7% turned down a job offer or promotion.
  • Estimates show that women caregivers in Canada lost an aggregated $221 million in wages annually between 2003 and 2008 due to absenteeism, reducing work hours or leaving employment entirely.
  • Among women caregivers who have access to flexible work arrangements, half (47%) feel they cannot utilize these options without it having a negative impact on their careers.

 

Download the infographic from the Vanier Institute of the Family.

A Snapshot of Workplace Mental Health in Canada

At some point in our lives, we are all affected by mental illness, whether through personal experience or that of a family member, friend, neighbour or colleague. Mental health conditions can have a significant impact on individuals, but they can also “trickle up” to have a detrimental effect on workplaces, communities, the economy and society at large – no one remains untouched. It is therefore vital that support for mental health be multi-faceted and every bit as prevalent as the conditions it seeks to address.

Stigma remains a major barrier to care for those living with a mental illness, many of whom are receiving, and benefiting from, care and support from their families.

This edition of the Vanier Institute of the Family Statistical Snapshots series explores mental health, families and work – three key parts of our lives that intersect and interact in complex ways that affect our well-being.

Highlights include:

  • 4 in 10 Canadians have a family member with a mental health problem.
  • At least 500,000 employed Canadians are unable to work due to mental health problems in any given week.
  • Mental illness accounts for an estimated 30% of all disability claims and 70% of disability costs.
  • Stigma remains an issue, with 1 in 5 surveyed Canadian employees saying they believe that whether or not someone becomes mentally ill is “fully within their control.”
  • 4 in 10 surveyed Canadian employees say they would not tell their manager if they were experiencing a mental health problem.
  • More than 7 in 10 Canadians who are affected by a family member’s mental health problem provided care to them, and 68% say they are not embarrassed about their family member’s mental health condition.

 

Download from the Vanier Institute of the Family.

Understanding the Impact of Fort McMurray Wildfires on Foreign National Family Caregivers

The recent wildfire in northern Alberta, which began in early May and has only recently been brought under control, has had a profound impact on Fort McMurray and its surrounding communities. Approximately 2,400 buildings were destroyed, including many family homes and businesses, and the fire ravaged nearly 600,000 hectares of land. Many of the families in the region have experienced significant trauma due to their losses, the evacuation of more than 80,000 people and the overall impact on the community.

Live-in caregivers (foreign nationals living in Canadian homes and employed to provide child or adult care) working in and around Fort McMurray have been strongly affected by these events. These people comprise a unique and important workforce that is highly educated and experienced, and are “crucial to bridging work–family relations for their employers, especially those who work in the oil sands industry,” notes Dr. Sara Dorow, Associate Professor of Sociology at University of Alberta in Live-in Caregivers in Fort McMurray: A Socioeconomic Footprint.

Dorow explores the impact of the wildfire on the caregiver workforce in a new study, Caregiver Policy in Canada and Experiences after the Wildfire: Perspectives of Caregivers in Fort McMurray, which reports on findings from an online survey of 56 live-in caregivers working in and around Fort McMurray.

Key findings include:

  • Caregiver evacuees are experiencing emotional and financial stress as a result of uncertainty with regard to their continued employment and housing – realities that are “tied together” through dependency on a single employer.
  • The fire has caused stress over the disruption to their pathway to permanent residency, which requires the completion of 24 months or 3,900 hours of work.
  • Despite these experiences, many expressed gratitude for the emergency relief funds and donations they have received from employers, friends, family and the community. Few report having applied for Employment Insurance.

The study was carried out as part of On the Move, a research partnership that includes the Vanier Institute of the Family and 40 researchers from across Canada and around the world. This partnership investigates how employment-related geographic mobility (E-RGM) affects households and communities, and how E-RGM influences and impacts Canadian prosperity.

Timeline: Fifty Years of Men, Work and Family in Canada

Over the past half century, fatherhood in Canada has undergone a significant evolution as men are increasingly sharing the “breadwinning” role, embracing caring responsibilities and integrating their responsibilities at home, at work and in their communities.

To explore these trends and the social, economic, cultural and environmental contexts that shape – and are shaped by – fatherhood and family relationships, we’ve created a 50-year timeline for Father’s Day 2016. Some highlights include:

  • More fathers are taking time off to care for their newborn children. More than one-quarter (27%) of all recent fathers in Canada reported in 2014 that they took (or intended to take) parental leave, up from only 3% in 2000.
  • The number of “stay-at-home” fathers is on the rise. Fathers accounted for approximately 11% of stay-at-home parents in 2014, up from only 1% in 1976.
  • Fathers of young children are absent from work more frequently for family-related reasons. Fathers of children under the age of 5 report missing an average 2.0 days of work in 2015 due to personal or family responsibilities, up from 1.2 days in 2009.
  • Fewer “lone fathers” are living in low income. In 2008, 7% of persons in lone-parent families headed by men lived in low income, down from 18% in 1976.
  • Fathers are increasingly helping with housework. Men who report performing household work devoted an average 184 minutes on these tasks in 2010, up from 171 minutes in 1998.
  • Fathers with flex are more satisfied with their work–life balance. More than eight in 10 (81%) full-time working fathers with children under age 18 who have a flexible schedule reported in 2012 being satisfied with their work–life balance, compared with 76% for those without a flexible schedule.
  • A growing number of children find it easier to talk to dad. In 2013–2014, 66% of 11-year-old girls and 75% of boys the same age say they find it easy to talk to their father about things that really bother them, up from 56% and 72%, respectively, two decades earlier.

This bilingual resource is a perpetual publication, and it will be updated periodically as new data emerges. Sign up for our monthly e-newsletter to find out about updates, as well as other news about publications, projects and initiatives from the Vanier Institute.

Enjoy our new timeline, and happy Father’s Day to Canada’s 8.6 million dads!

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Modern Fathers Reshaping the Work–Family Relationship

Nathan Battams

Canada’s “family landscape” is constantly evolving, with social, economic, cultural and environmental forces shaping and redefining family roles and relationships. Fatherhood is no exception, and today’s increasingly diverse 8.6 million dads in Canada are now taking a much greater role in family life than in previous generations.1 Many are moving away from the “traditional” breadwinning father figure to embrace a more caring role and are assuming more household management responsibilities. In doing so, modern dads are renegotiating and reshaping the relationship between fatherhood and work.

Men are “breadwinning” less while more women are taking on more paid work

As the participation of mothers in the paid labour market increased over the past 50 years along with a rise in dual-earner families, the share of “breadwinning dads” has fallen significantly. According to Statistics Canada, in 1976, 36% of families in Canada with at least one child age 16 and under had two earners in the paid labour force. By 2014, this accounted for 69% of these families. Another Statistics Canada study found that, in the same period, the proportion of single-earner families with the father as the sole earner dropped from 51% to only 17%.

Some fathers in couple families are stepping out of the paid labour market altogether to become the lead or primary parent, more commonly known as “stay-at-home” dads, either on a temporary basis while taking care of young children or permanently. Approximately 1% of fathers in single-earner families reported being stay-at-home dads 40 years ago – a rate that has since risen to 11%.

Canada is not alone in this regard. Data from a 2015 report from Pew Research Center suggests a similar trend in the United States, with 7% of US dads with children in the household reporting in 2012 that they “do not work outside the home,” up from 4% in 1989. Among these fathers, the share who said they are staying home to care for family more than quadrupled in this period to 21% (up from 5% in 1989).

Family relationships benefit from dads increasing involvement at home

Alongside these trends, data from the General Social Survey on time use suggests that modern fathers are devoting more time to family. Men report spending more time with family, increasing from 360 minutes per day in 1986 to 379 minutes in 2010. The average number of days fathers of preschool children miss from work for personal or family responsibilities rose from 1.8 days throughout 1997 to 2.0 days in 2015. The gender gap in housework has also been found to have declined in recent generations, with men reporting spending more time on these tasks than 30 years ago.

While only 3% of recent fathers across Canada took time off to receive paid parental leave benefits in 2000, more than one-quarter (27%) reported their intention to do so in 2014. This rate is significantly higher in Quebec (78%), where paternity benefits are offered to new dads in addition to parental benefits under the Quebec Parental Insurance Plan (QPIP). Quebec is currently the only province to offer paternity benefits, although the Minister of Employment, Workforce Development and Labour recently expressed interest in setting aside time for dads by making paternity leave a part of the proposed changes to Canada’s parental benefits program.

Greater father involvement can have an impact on family life and family relationships. In a study comparing parental leave in Quebec with the rest of Canada, author Ankita Patnaik found a “large and persistent impact” on gender dynamics in the three-year period following a father’s use of paternity leave. According to her study, fathers who took leave remained more likely to do housework, while mothers were more likely to engage in paid work. Under QPIP, Quebec dads also spent an average half-hour more per day at the family home than those outside of Quebec.

With all this evolution under way across North America, it is perhaps no wonder that many people feel as though their fathers are more involved than in the past. The Pew report mentioned earlier also found that nearly half (46%) of surveyed American fathers say they personally spend more time with their children than their fathers spent with them. In Canada, a Today’s Parent poll found that three-quarters (75%) of surveyed men said that they are more involved with their children than their fathers had been with them.

Children may also be feeling the effect of greater father involvement. According to international HBSC surveys conducted by the World Health Organization in 1993–94 and 2013–14, a growing share of 11-year-old children say they “find it easy” to talk to their fathers about things that really bother them – from 56% to 66% among girls, and from 72% to 75% for boys.

Work–life balance on modern fathers’ minds

As most fathers today are still working while also taking on a greater role in the family home, work–life balance has naturally become a growing part of the discussion about modern fatherhood. Recent data from Statistics Canada shows that most fathers – nearly eight in 10 (78%) – report being satisfied with their work–life balance. Family is central to the “life” in the work–life equation: among parents who said that they were not satisfied, the main cited reason for their dissatisfaction was “not having enough time for family life.”

Through their work–life policies and practices, employers play a significant role in enhancing and supporting the work–life quality of fathers. The same Statistics Canada study found that the share of fathers who report being satisfied with their work–life balance was consistently higher among those who have a flexible schedule (81%, vs. 76% for those without), who can take advantage of a flexible work schedule without a negative impact on their career (83%, vs. 74% for those who cannot), who have the possibility of taking leave without pay to care for their children (79%, vs. 71% for those who do not), and for those who have the possibility of taking leave without pay to provide care to a spouse, partner or other family member (81%, vs. 72% for those who do not).

“The share of fathers who report being satisfied with their work–life balance is higher for those with flexible work environments and with the option to take unpaid leave to care for their children and families.”

What’s good for the family is good for the workplace

Flexibility and work–life balance satisfaction go hand in hand, which means organizations with flexible, family/father-friendly policies are more likely to attract and retain top talent who are (or plan to become) fathers. Conversely, those that do not practise flex may drive away and/or fail to attract dads – in fact, half (49%) of surveyed fathers in Canada said they would consider making a job change if a potential employer offered more family-friendly options than their current employer, according to a Harris/Decima poll.

Modern fathers aren’t caring more, they’re just providing care differently

While fathers have always cared for their families, today’s generation is becoming increasingly involved in family caring roles – a shift that brings with it benefits for family life and family relationships. While dads from previous generations provided their care through a greater emphasis on paid work and financial stability, today’s fathers are more directly involved in their children’s early years, are spending more time with family, and are seeking workplaces that support their evolving role in family life. By taking on these new roles, they are redefining what fatherhood means to families, workplaces and their communities.

 


Nathan Battams is responsible for publications and social media at the Vanier Institute of the Family.

 

Note

1 Caryn Pearson, “The Impact of Mental Health Problems on Family Members,” Health at a Glance (October 7, 2015), Statistics Canada catalogue no. 82-624-X.Link: 

Intergenerational Relations and Societal Change

Donna S. Lero, Ph.D.

In order to better understand families’ experiences and aspirations, it is crucial to understand the context in which families and their individual members live. Families are society’s most adaptable institution, constantly reacting to cultural, social and economic forces while affecting those same forces through their thoughts and behaviour. A number of recent and projected demographic and social trends are expected to have a significant impact on relationships between different generations, and exploring these shifting contexts can provide valuable insight into how intergenerational relations are affected and the potential impacts they have on social cohesion within families and in different generations – the question of intergenerational equity.

Population aging increases caregiving needs and lengthens intergenerational relationships

Population aging is a feature of most developed societies, a result of low fertility rates and people living longer. These two forces are transforming the traditional population pyramid to a more rectangular shape, shifting the size and proportion of older populations in society. In Canada, the proportion of the population 65 years and over increased from 8% in 1971 to 15.3% in 2013, and will be close to 25% in 2050.

Canada is not alone in this regard: across Europe, the proportion of the population aged 80 and over is expected to increase from 4% in 2010 to close to 10% by 2050, with substantially higher proportions in Germany, Italy, Japan and Korea. These trends have major implications for government planning in order to address pensions, health care costs, home and residential care, and supports for family caregivers.

Of increasing concern is the projection that there will be more individuals in their advanced years, with fewer children and grandchildren to provide care and assistance. Using census data, Janice Keefe and her colleagues have projected that the number of elderly people needing assistance in Canada will double in the next 30 years and that the decline in the availability of children will increase the need for home care and formal care, particularly over the longer term. Notably, it is projected that close to one in four elderly women may not have a surviving child by 2031.

Lero_EN

Baby boomers continue to be the largest population group, still dominating the workforce, but starting to reach traditional retirement age. This group is experiencing caregiving pressures for aging parents and facing significant challenges managing paid work and care. In 2007, 37% of employed women and 29% of employed men aged 45–64 were caregivers, and those proportions are set to increase. At the same time, an estimated 28% of caregivers still have one or more children aged 18 or younger at home.

A recent trend in Canada and the U.S. is an increasing proportion of “older workers” typically defined as 55 years and older. Still healthy and capable, many people in their 60s and 70s are either prolonging careers or taking new jobs, often to supplement savings and/or limited pension income that will not last through their full retirement years. Canadian federal, provincial and territorial ministers responsible for seniors have identified the promotion of workplace supports for older workers, including supports to balance work and care, as one of two priority areas for the coming years.

In addition to being the largest population group, baby boomers have encountered different social circumstances growing up than their parents did. In the U.S. and Canada, they have been influenced by changes in women’s rights and roles, the sexual revolution, higher rates of divorce and enhanced educational opportunities. The longevity of the boomers’ relationships to their siblings and to aging parents has been described as “unprecedented” and their experiences as caregivers to their aging parents and their expectations and capacities as they age will significantly influence policy developments related to pensions, health care and long-term care.

Baby boomers have also had particularly close relationships with their children, and a poor economy that is limiting their young adult children’s opportunities and contributing to delayed family formation and careers is a source of significant concern. As a result, many boomers are concurrently providing substantial care to aging parents with chronic illnesses; have significant ties to siblings who, like themselves, may be carefully monitoring their retirement savings and possibly planning to extend their involvement in the labour force; and are providing support to their own children. Siblings, parents and grandparents today have a greater amount of time together than in previous generations. Vern Bengston has described this as a positive trend at the micro level, as it creates prolonged periods for shared experiences and opportunities for exchange that can strengthen intergenerational solidarity, despite a general societal trend at the macro level toward weakening norms governing intergenerational relations.

Greater diversity in family forms increases the role of “chosen families”

Baby boomers and their adult children have experienced higher rates of separation and divorce, remarriage, blended families and common-law arrangements than previous generations. An increase in same-sex unions and marriages is also evident. These complex and diverse relationships can result in what Karen Fingerman describes as “complex emotional, legal and financial demands” from former partners, estranged parents and relatives such as former in-laws or stepchildren. While complicating the nature of relationships and creating ambiguous expectations for exchange and support, Bengston suggests that the diverse network of relationships can provide a broader “latent kin network” (sometimes referred to as “fictive kin”) that can provide additional support when needed.

This latent kin network, which increasingly includes close friends who function “like family,” may substitute for or augment the support available from fewer or estranged family members, who may be geographically distant and/or have weaker ties over time. Interesting policy questions emerge when legal rights, financial benefits and other supports that were developed with heterosexual nuclear families in mind do not extend to the broader diversity and complexity of family forms evident in modern societies.

Longer transitions for youth into the labour market increases intergenerational dependency

A variety of cultural, social and economic conditions has been identified as factors that are contributing to a prolonged transition to adulthood in North America. Evidence of this lengthy and sometimes precarious transition to financial independence includes young adults’ extended involvement in education, a higher proportion living at home with their parents than previously, delayed and difficult entries into the job market and into long-term career paths, and delayed conjugal formation and child-bearing.

These processes have been occurring over a period of time, but are increasingly evident and in contrast to the experiences of previous generations at the same age. Young people’s experiences have led to longer periods of financial dependency on parents at the micro level and they are contributing to emerging concerns about intergenerational equity at a broader social level.

Given increasingly tight job prospects and the importance of education for good jobs in a knowledge-based economy, more young adults are turning to post-secondary education programs and the gaining of credentials as a way to increase employment opportunities and earnings. In Canada and other OECD countries, almost half of those in their early 20s are attending educational institutions full-time. Consequently, the tendency to stay in school longer, in conjunction with the extended time it takes to obtain employment in a related field, is increasing the average duration of the school-to-work transition.

Although post-secondary education adds human capital for individuals and for society, the benefits of a university degree may not be evident when graduates have difficulty finding suitable employment, as has been the case in recent years. Those with only a high school education face an even more difficult time finding a job that pays a living wage.

A complicating factor for many university graduates in Canada and the U.S. is the level of student debt. According to a 2013 Bank of Montreal student survey, current university students in Canada anticipate graduating with over $26,000 in debt. Student debt levels have escalated, particularly in the last decade, as tuition fees have increased – a function of limited government funding. Current student loan programs require that graduates begin repayment almost immediately after graduation. In addition to the anxiety accumulated debt produces for students, it is a substantial impediment to gaining financial independence from parents and it contributes to delaying marriage, child-bearing, home ownership and other purchases.

A serious concern, reflected in a growing number of current news reports, is the challenge young adults have finding jobs that afford a living wage. As described by James Côté and John Bynner, “Today’s young people face a labour market characterized by an increasing wage gap with older workers, earnings instability, more temporary and part-time jobs, lower-quality jobs with fewer benefits and more instability in employment.” These authors go on to state an additional concern: that “the decreased utility of youth labour in the context of this job competition has produced a growing age-based disparity of income (emphasis mine), contributing to increasingly prolonged and precarious transitions to financial independence.”

Statistics Canada has reported that, in 2011, 42.3% of young adults aged 20–29 lived in the parental home, either because they had never left it or because they returned home after living elsewhere. Most telling is the finding that, among 25- to 29-year-olds, one-quarter (25.2%) lived in their parental home in 2011, more than double the 11.3% observed in 1981.

The Pew Research Center’s report on the millennial generation in the U.S. (aged 18–33) has noted marked generational changes in the age of marriage. In 2013, just 26% of the millennial generation was married, compared to 48% of baby boomers (aged 50–64) when they were the same age. The current pattern of delayed child-bearing evident in Canada is a natural consequence. People are having fewer children (if any) and having them later. Beginning in 2005, fertility rates of mothers in their 30s has outnumbered the rates observed among mothers in their 20s. In 2011, 2.1% of all first-time mothers who gave birth that year were in their 40s, up from 0.5% in 1991.

Higher rates of immigration lead to greater diversity in intergenerational relationships

Rates of international immigration have increased dramatically in recent decades, spurred by greater opportunity to do so and economic needs. For many years, Canada has relied on international migration as a source of population and labour force growth. Resettlement policies and services aid in the transition of newcomers, promoting the learning of English or French, enhancing access to health and community services, and facilitating a smoother transition to the labour force.

Although newcomers may be more dependent on immediate family members for support, they experience wider discrepancies in expectations between generations in the family as a result of acculturation. For example, cultural and religious values may place particular emphasis on respect for elders and filial obligations to provide support, yet studies of immigrants from diverse backgrounds suggest that immigration and acculturation can place significant strains on newcomer families. This can particularly be the case when aging parents expect filial support and reject formal support and their adult children face economic challenges that require their involvement in precarious employment, multiple jobs or work that involves long hours or non-standard schedules.

In summary, multiple factors, including population aging, low fertility rates, increasing diversity in family forms, delayed transitions to financial independence and high rates of international immigration, affect the nature of intergenerational relations at both the micro and macro levels. As the population in Canada continues to age, generations will share relationships for longer periods of time. Longer intergenerational relationships mean that families (whether related by blood or marriage or “chosen” circles of kin) will have a greater amount of time in which members can provide support and care for each other, regardless of the context in which they live. Challenges include ensuring that supports are available that sustain caring relationships over time, especially in more complex circumstances and in a context of limited and fragmented supports for caregiving.

 


Dr. Donna S. Lero is a Professor in the Department of Family Relations and is the Jarislowsky Chair in Families and Work at the University of Guelph. She leads a program of research on public policies, workplace practices and community supports in the Centre for Families, Work and Well-Being, which she co-founded.

 

This article is an edited excerpt from Intergenerational Relations and Social Cohesion, a background paper prepared for the Regional Expert Group Panel Meeting marking the 20th anniversary of the International Year of the Family and first published in Transition magazine.

Public Policy Brief – Flex: From a Privilege to a Right

Sara MacNaull

Working family members are multi-taskers, managing a variety of responsibilities at home, at work and in their communities. While family members demonstrate a great deal of adaptability in managing multiple roles, they benefit from workplaces that are respectful of their lives outside of work and responsive to their requests for flexibility and autonomy.

Workplace flexibility continues to be a topic of great interest to individuals, families, employers and policy makers. There are many approaches to creating flexible work environments, including modifications, adaptations and accommodations that impact when, where and how work gets done.

Workplace flexibility: A win-win-win strategy

Families are not the only ones who benefit from workplace flexibility as family members strive to effectively manage their multiple roles. Employers are embracing workplace flexibility as a key lever to attract and retain top talent in a competitive job market. Society benefits by having a stable workforce and an economy fuelled by organizations operating at peak performance.

Recently the Prime Minister of Canada identified workplace flexibility as a “top priority” in the mandate letter to the Minister of Employment, Workforce Development and Labour. In particular, the Minister was instructed to:

Work with the Minister of Families, Children and Social Development to fulfill our commitments to provide more generous and flexible leave for caregivers and more flexible parental leave.

… and to

Amend the Canada Labour Code to allow workers to formally request flexible work arrangements from their employers and consult with provinces and territories on the implementation of similar changes in provincially regulated sectors.

The proposed amendments to the Labour Code would mean that employees would be given the legal right to formally request flexible work arrangements from their employers.

Currently, in Canada there is no formal, legal mechanism for employees to request flex, and supervisors/managers are not legally required to consider such requests – the response is at the discretion of the employer. The right to request flex is considered by some to be a privilege for employees, and depends on the supervisor/manager’s personal perspective. Responses to requests are shaped by the culture of their organization. Right-to-request-flex legislation would change this by formalizing and normalizing this process while ensuring that employers justify why they refuse to grant the request, should they need to do so.

The Vanier Institute recently studied workplace flexibility in a benchmarking initiative that included a survey of employers and HR professionals. This survey found that employers offering flex is no longer considered optional, and is in fact key to attracting and retaining top talent in today’s competitive labour market. Many participants in the study also said that flex is already a right in their organization, as opposed to an employee privilege.

Flex is already a right elsewhere

Countries such as Australia and the U.K., as well as parts of the U.S., have implemented the right to request flex in their respective employment/labour legislations and/or regulations. However, eligibility requirements vary and, depending on the jurisdiction, it may not be available to all employees.

In Australia, the right to request flexible work arrangements (FWAs) was introduced through the Fair Work Act 2009, which provides employees who meet the eligibility requirements the legal right to request flexible work. Eligible employees include those:

  • Who are parents or who have the responsibility to care for a child who is school-aged or younger
  • With caregiving responsibilities (as defined by the Carer Recognition Act 2010)
  • With a disability
  • Who are aged 55 years and up
  • Who are experiencing family violence or caring for someone who is experiencing family violence
  • Who have worked for the employer for at least one year (though long-term casual employees may also be eligible)

In the U.K., the right to request flex was extended to all employees in 2014. Previously, this right had been limited to parents and carers, similar to some of the eligibility requirements in Australia.

In the U.S., eligibility requirements vary depending on the legislation within a particular jurisdiction. For example, employees within the state of Vermont were granted the right to request flex in 2014, the same year in which both the city of San Francisco employees and all federal U.S. employees were granted such a right.

Right to request differs from right to flex

In Australia and the U.K., the employer must provide, in writing, specific reasons for refusing a request for flex. The refusal must be due to reasonable business grounds, such as extra costs to the employer; significant loss in productivity, quality or performance; resulting inability to meet customer demands; or inability to reorganize work among other staff members.

While details of the pending right to request flex legislation are not public as of publication date, measures to facilitate flexible work could provide families with further support as they strive to manage their various responsibilities, commitments and obligations. For families, this means that work–life quality may be improved by having the time and energy to care for others and care for oneself while remaining a productive and committed employee.

 


Alternative work arrangements (AWAs) are temporary arrangements that differ from the norm within an organization (i.e. standard “9-to-5” workdays) and are case-by-case “one-offs” tailored to an employee’s short-term needs. These arrangements focus on the employee’s time in the office. Examples may include a phased return from maternity or parental leave for a pre-defined period of time or an adjustment to start and end times during the recovery period following an illness or injury.

Flexible work arrangements (FWAs) allow employees more flexibility and autonomy around when, where and how works gets done. FWAs help employees manage their multiple roles inside and outside the office. Though some employees may find it daunting to ask their supervisors for flex, as it may be perceived as an employee privilege, for many families it’s a necessity in order for them to manage the everyday needs of family. Examples of FWAs include remote work, compressed work weeks, job sharing and flex hours.

Customized work arrangements (CWAs) are individualized and personalized work arrangements that tailor when, where and how work gets done. Unlike AWAs and FWAs, these arrangements are fluid, extend over long periods or are modified as circumstances change. Employees are evaluated on output and productivity through a results-based approach, rather than a “clock-in/clock-out” approach focused on time spent physically present in the workplace. Examples include Mass Career CustomizationTM, for example, workload dial-up or dial-down, depending on an employee’s situation.


 

Sara MacNaull is Program Director at the Vanier Institute of the Family and is currently working toward earning the Work–Life Certified Professional designation.

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Timeline: Fifty Years of Women, Work and Family in Canada

While mothers in Canada have always played a central role in family life, there’s no question that the social, economic, cultural and environmental contexts that shape – and are shaped by – motherhood have evolved over time.

A growing share of mothers are managing paid work and family responsibilities compared with previous generations, and the dynamic relationships between women, work and family continue to evolve. To explore these relationships through a broader lens, we’ve created a 50-year timeline for Mother’s Day 2016 that explores some of the long-term trends over the past half century, including:

  • An increase in women’s participation in the paid labour force, which has grown from 40% in 1968 to 82% in 2014 for those aged 25 to 54
  • A growing share of “breadwinning” moms among single-earner couple families, which has steadily increased from 4% of earners in these families in 1976 to 21% in 2014
  • A significant drop in the low-income rate among single mothers, which has fallen from 54% in 1976 to 21% in 2008
  • A declining fertility rate, which stood at 3.94 women per children in 1959 during the peak of the baby boom, but has since dropped to 1.61 in 2011
  • A continually rising average age of first-time mothers, up from 24.3 years of age in 1974 to 28.5 in 2011
  • A greater amount of time mothers are spending with family, with women reporting 421 minutes (7 hours) per day with family in 2010, up from 403 minutes (6.7 hours) in 1986

This bilingual resource is a perpetual publication, and it will be updated periodically as new data emerges. Sign up for our monthly e-newsletter to find out about updates, as well as other news about publications, projects and initiatives from the Vanier Institute.

Enjoy our new timeline, and happy Mother’s Day to Canada’s 9.8 million moms!

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My Caregiving Journey

Katherine Arnup, Ph.D.

 

Before my sister got sick, I had never really thought of myself as a caregiver. Of course, like almost every girl growing up in the 1950s, I had a menagerie of dolls and stuffed animals I took care of, doling out medicine, taking their temperatures and giving needles with the tools from my red plastic Nurse’s Kit.

As a sickly, asthmatic child, I had more than my share of doctor’s visits, what with weekly allergy shots and the panoply of childhood illnesses including tonsillitis, red measles, German measles, chicken pox, mumps, whooping cough. The experience left me with no desire to become a doctor or a nurse. I would be a teacher and, I asserted at 12, I’d be a mother, though I was certain that I would never marry – a prediction that turned out to be almost entirely accurate.

My mother was an amazing caregiver. I suppose she pretty much had to be in the 1950s, what with big families (my parents had four girls) and her husband away on business for increasing amounts of time. Imagine, my mother had to deal with all four of us getting whooping cough, though not, of course, at the same time! That would have been far too efficient. She nursed my sister Carol when she had scarlet fever, mononucleosis and, as an adult, melanoma.

While I always pictured I would care for my children, caring would be part and parcel of motherhood, along with making play dough, overcoming sleepless nights and singing nursery songs. Caring was more of an action than a role, and certainly not an identity.

I don’t think my mother defined herself as a caregiver. She was to be a companion, wife, mother and homemaker. Not a laundress or seamstress. Not a nurse or nursemaid. Though she became all of those things to a great extent – and less and less my father’s partner.

As adults, we knew we could always call Mom whenever someone was feeling sick, and she would offer sympathy, advice if asked for and a run to the drugstore if needed. She loved being a grandmother, and the connection between us grew much stronger following the birth of my first daughter.

In 1990, at the age of 71, my mother suffered a devastating brain aneurysm that left her with multiple disabilities, needing 24-hour care until her death in 2006. Our caregiving mother was gone. To make up for our loss, my sister Carol and I pledged that we would take care of each other should one of us become ill.

Little did I expect to be called upon to fulfill that promise so soon.

In 1997, Carol’s cancer returned with an unstoppable force. Along with a team of family and friends, I cared for her during the final six months as her life slipped away.

This was long before the Internet and the wide range of information, resources and connections it offers. It felt like we were on our own, relying on books, articles, friends with medical training, but mostly flying by the seat of our pants. Since I was on sabbatical from my job at the university, I had precious time to spend with Carol day after day.

I learned about constipation caused by opioids, the difference between melanoma and sarcoma and what that meant for treatment options, about TKR (total knee replacement), CT scans, MRIs, commodes, anti-nausea medications, K-basins and mouth swabs. I learned where to buy the best home health products, ginger ale and high-end popsicles.

I learned how to request assistance from the Community Care Access Centre, and about the different “levels of care.” I learned that 15 hours a week was the most care you could receive (even if you needed round-the-clock care) and that the care provided was just a step above a “sitter,” someone you could hire to sit (and hopefully not fall asleep) with Carol during the night. I learned where to order a hospital bed, a commode, a walker.

I learned how to tell most people they couldn’t visit, how to enlist Carol’s special people to sign up for shifts, how to politely decline all calls for Carol.

I learned how to call a family meeting and ensure that everyone showed up. I learned how to set an agenda, chair the meeting and prepare the minutes, thereby establishing routines and commitments. I learned how to stifle my anger in the interests of providing Carol with the best possible care. I learned how to focus my anger on getting medical treatment sooner than the established (far off) date.

I learned that getting cancer sucks – and that getting a terminal diagnosis sucks even more. I learned that some pain just can’t be stopped: the pain in Carol’s foot, in her spine, in her knee. I learned that a broken heart still keeps beating.

I learned how to order a cremation, how to buy a cemetery plot, how to acquire the drugs necessary for assisted suicide, how to change a medical power of attorney, how to add a codicil to a will.

I learned that everyone has their own version of crazy when they are facing the loss of someone they love. I learned that I would never get over losing my sister. And I learned that her death transformed me in ways I could never have imagined.

I was 47 when my sister died (she was 51). Though often scared that I would not be able to fulfill my promise, my love for her enabled me to face my own fear of cancer, illness – even death itself. Those fears had dominated and limited my life, but by facing them, I have been able to bring comfort to hospice patients and their families, and to friends and relatives facing their parents’ aging.

If you’d asked me 20 years ago if I would be a hospice volunteer, I would have told you that you were crazy. I would have told you I was terrified of death and that a hospice would be the last place I’d set foot in, let alone return week after week for 14 years.

If you’d asked me if I would be the “go to” person for friends and family who were facing the loss of someone they love, I would have said, “You’ve got to be kidding.” I was the person who steered a wide berth around someone whose mother had just died, justifying my actions by the claim that “I don’t know what to say.”

Yet, love enabled me to face my fears of illness and death, to become a caregiver to my sister and my parents, and to learn the lessons I share with others through my writing, public talks and hospice volunteering.

 


Katherine Arnup is a writer and life coach specializing in transitions and a retired Carleton University professor. Author of the award-winning book Education for Motherhood, a history of advice for mothers, she has pioneered studies on the diversity and complexity of family life. In her latest book, “I Don’t Have Time for This!” A Compassionate Guide to Caring for Your Parents and Yourself, she tackles the last taboo – death itself.

 

It’s Time to Care for Our (Young) Carers

Andrea Breen, Ph.D.

When I type the words “Millennials are” into Google, four options pop up: “Millennials are lazy,” “Millennials are useless,” “Millennials are entitled” and “Millennials are narcissistic.” What doesn’t pop up is a search term to suggest the reality that we increasingly rely on our young people to provide unpaid care for adults in our families and communities. Data from Statistics Canada’s 2012 General Social Survey indicate that 1.9 million Canadians between 15 and 29 (27% of those in this age group) are “young carers”: young people who provide unpaid care for others for reasons of illness, disability, addiction or injury.

The statistics are surprising: the amount of time young people aged 15–24 spend caring for others is similar to that of their counterparts in the 45- to 54-year-old age range.1 Like middle-aged adults, most young carers provide care for just a few hours or less per week, but approximately 5% of young carers spend more than 30 hours per week caring for others. Young carers most typically look after their grandparents (40%), parents (27%) friends and neighbours (14%) and siblings or extended family members (11%). Nearly one in five (19%) of young carers report caring for three or more people.2

Canada is behind the US, UK, Australia and Sub-Saharan Africa in public awareness and policy development related to young carers.3, 4 Many Canadians aren’t familiar with the term young carers; as such, their struggles and needs remain largely invisible. At the federal level, supports that have been developed for carers, such as the caregiver credit and Compassionate Care Benefit, are intended for working adults.5 While the Canadian Human Rights Tribunal prohibits family status as grounds for discrimination, we do not yet have precedent for young carers, nor do we have explicit policies for supporting and accommodating young carers in our schools and post-secondary institutions.

Most of what is known about young carers in Canada comes from the recent work of a few researchers and a small handful of forward-thinking community organizations. There are important questions that we have only begun to ask about caregiving and its impacts on young Canadians’ psychological and social development: How might caregiving responsibilities shape or constrain identity development, relationships, educational opportunities, career development, leisure pursuits and personal and financial trajectories? How does caregiving impact on young carers’ mental health and well-being? What kinds of policies and practices need to be in place in our schools, communities, workplaces and post-secondary institutions to support young carers?

Early research suggests that caregiving can be beneficial when caregivers are supported: providing care for others can enhance social and emotional development, build a sense of competence and self-efficacy, and nurture empathy and compassion.6 I’ve seen some of the benefits reflected in my university students who are young carers. I’ve had several students who have pursued careers in gerontology because they provide care for an ailing grandparent, students who are passionate about working with children who have special needs because of their experiences caring for a sibling and students who are dedicating their professional lives to careers in mental health because they care for a parent who struggles with mental illness. In cases such as these, early experiences with caregiving can shape young carers’ identities in positive ways and orient them to a future that is focused on making meaningful contributions to others’ lives.

But caregiving also takes a toll. Young carers are especially vulnerable to social isolation, mental health challenges and lower educational attainment.7 For the estimated 47% of young carers who attend school,8 chronic lateness, absenteeism, insufficient time for assignments, anxiety and problems focusing can make balancing school and caregiving a challenge.9 One teenager I know in Nunavut recently left school to care for her dying grandmother, a situation that is much more common than most of us realize. Nationwide, an estimated 7% of young carers leave school early10 and the situation may be especially urgent in Northern Canada; in 2006 an estimated 46% of youth in the Yukon, Northwest Territories and Nunavut provided some form of unpaid care to others.11 I wonder how many teachers and administrators are aware of this reality in their students’ lives?

Supporting young carers is a complex undertaking. Young carers are a diverse group, with varied experiences and needs. There are subgroups of young carers who are likely to be especially vulnerable, including those who devote significant time to caregiving, those with few social supports as well as young carers from marginalized communities who may face intersecting vulnerabilities to isolation and invisibility. We also need to be concerned about our youngest caregivers – Statistics Canada collects data on caregivers over the age of 15 only, which means that we know almost nothing about children and young adolescents who provide care for others.

Several years ago, I worked with a 12-year-old boy who had been suspended from school for severe behaviour problems. Over time, we learned that this boy and his slightly older brother were providing care for their mother, who struggled with depression and alcoholism. The boys took care of household tasks, shopping and preparing meals, and were doing their best to find help for their mother. These boys faced the same struggles as many adult carers – exhaustion, constant worry for someone they love, a sense of helplessness in the face of illness, limited time for other activities, mental health issues and deepening poverty and isolation. But they were especially vulnerable because they were children. They lived in fear that their situation would be discovered and they would be removed from their home. They were worried for themselves and also for their mother, who they thought wouldn’t be able to survive without them.

This family’s situation is an example of the shortcomings of intervention approaches and funding models that target individuals – we could “treat” the boy’s behavioural issues in isolation, but until someone provided real, meaningful help for his family, the boy’s risks for mental health challenges, poor physical health, school failure, criminality and other potentially devastating outcomes would likely only increase over time. How many youth are there like this in our communities? How many children look after their parents and guardians who are too ill, injured or disabled to take care of themselves? So far, we don’t have the answers – because we haven’t really been looking.

I had first heard the term “young carers” in a CBC Ontario Today interview with Vanier Institute CEO Nora Spinks and I was eager to know where she thinks those of us who are researchers should be focusing our attention. Her answer? One important area of focus is caregivers who are under the age of 10. She is concerned that digital technologies may be increasing possibilities for really young caregivers to be hidden from society; she points out that it can be relatively easy to conceal when families are falling apart because so many of our interactions now occur online. We can bank online and order food online – as long as they have access to a credit card, no one sees that it is a 9-year-old who is taking care of these tasks.

Demographic trends including an aging population, smaller families, more skip-generation parenting and geographical dispersion mean that the number of young carers in Canada is rising.12, 13 We need to focus attention on young carers in order to move people into awareness and action. There is a great deal of work to be done to develop research, programs and policies that can help us recognize and nurture the caregivers we depend on. Most importantly, we all need to look more closely at the children, youth and young adults in our schools and communities to recognize the hidden challenges they face and the remarkable contributions that so many of them are making.

 


Andrea Breen is an Assistant Professor of Family Relations and Human Development at the University of Guelph. Her research focuses on storytelling and implications for well-being, resilience and social change; and the use of technology to enhance well-being in children, youth and families. Dr. Breen has extensive experience developing innovative educational programs in school, mental health and detention settings and she served as Chief Scientist for the parenting app, kidü. Dr. Breen completed her Ph.D. in Developmental Psychology and Education at OISE/UT. She also holds a master’s degree in Risk and Prevention from the Harvard Graduate School of Education and a Bachelor of Education degree from McGill University.

 


SOURCES

Action Canada Task Force (2013), Who Cares About (Young) Carers? Raising Awareness for an Invisible Population.

Battams, Nathan (2013), “Young caregivers in Canada,” Fascinating Families 59, The Vanier Institute of the Family.

Bleakney, Amanda (2014), Young Canadians Providing Care, Statistics Canada.

Charles, Grant, and Tim Stainton and Sheila Marshall (2012), Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving, The Vanier Institute of the Family.

Stamatopoulos, Vivian (2015a), “Supporting young carers: A qualitative review of young carer services in Canada,” International Journal of Adolescence and Youth. 

Ibid. (2015b), “One million and counting: the hidden army of young carers in Canada,” Journal of Youth Studies.

 


NOTES

1 Battams (2013).

2 Bleakney (2014).

3 Becker (2007).

4 Stamatopolous (2015a).

5 Ibid.

6 Charles, Stainton, and Marshall (2002).

7 Charles et al. (2012).

8 Bleakney (2014).

9 Charles et al. (2012).

10 Bleakney (2014).

11 Stamatopoulos (2015b).

12 Stamatapoulos (2015a).

13 Stamatapoulos (2015b).

 


Further Reading

Programs and Networks:

Cowichan Family Caregivers Support Society Young Carers’ Network

Hospice Toronto Young Carers Program

Powerhouse Project: Young Carers Initiative

Young Carers Project of Waterloo Region

 

Family Caregiving in Canada: A Fact of Life and a Human Right

Nathan Battams

At some point in our lives, there is a high likelihood that each of us will provide care to someone we know – and receive care ourselves – at least once. Family members are typically the first to step up to provide, manage and sometimes pay for this care. The forms of family care we provide and receive are so diverse, not to mention second nature, that we may not even think of them as caregiving: driving a sibling to a medical appointment, preparing a meal for a grandparent, picking up a sick child from school – these are all a part of the “landscape of care” in which we live.

Families are highly adaptable and most of the time people find ways to manage their multiple work and family responsibilities, obligations and commitments. However, this can be challenging for some working caregivers, since most who juggle work and caregiving are employed full-time. When working family members, protected by the Canadian Human Rights Act, find themselves in a dilemma between providing required care and fulfilling their work obligations – and if they have exhausted other reasonable options to arrange for this care – employers may be obligated under human rights law to accommodate the employee on the basis of family status. Human rights are intended to provide a framework of rights and flexibility so that workers can fulfill both their work and their caregiving obligations.

Accommodation under human rights requires flexibility from employees and employers

Reconciling care and work in a harmonious manner requires respect and recognition from employers of the fact that sometimes family circumstances need focused attention. Ideally, an employer has in place policies that are inclusive, providing both flexible workplaces (which can reduce the number of individual requests) and a process for handling individual requests for accommodation, where this flexibility may not be enough.

Individual requests for accommodation based on family status require that the employee show a substantial caregiving obligation – it cannot simply be a personal choice to do something for a family member. For example, a parent leaving work to drive a child to extracurricular activities would be a personal choice, whereas leaving work to drive them to a hospital if they could not find an available caregiver would be considered an obligation.

Reconciling care and work in a harmonious manner requires respect and recognition from employers of the fact that sometimes family circumstances need focused attention.

Obligation alone, however, is not enough. The employee must demonstrate that they have attempted to reconcile work–care conflicts and have explored all realistic alternatives accessible to them. When individual requests arise, the employer must examine if there is a negative impact on the employee due to a dilemma between caregiving obligations and a practice or rule in the workplace. If this is the case, the employer must allow time for the employee to explore options, discuss the issue with the employee, do an individual assessment of the specific circumstances and consider flexible workplace arrangements (FWAs).

Employers can refuse to accommodate, but only if they can provide evidence that doing so would create “undue hardship” for their organization as a result of adjusting policies, practices, bylaws or physical space to accommodate. Undue hardship has no strict legal definition – each case must be treated within the specific context, taking into account various workplace and operational requirements. Human rights law also requires requests for accommodation to be considered individually, taking into account diverse family roles and expectations. Employers must provide evidence as to the nature and extent of the hardship.

Johnstone v. Canada was a landmark family status case that helped to clarify the types of circumstances in which an employer has a duty to accommodate an employee with parent–child caregiving obligations. Fiona Johnstone and her husband worked full-time on rotating, unpredictable shifts for the Canada Border Service Agency (CBSA) while raising two toddlers. Her husband also travelled for business. Johnstone requested a full-time fixed shift schedule so she could fulfill her child care obligations. While the CBSA permitted fixed shifts, they only granted them on a part-time basis, so they refused to accommodate the request. The CBSA argued that child care responsibilities are the result of personal choice and did not trigger a “duty to accommodate.”

The Canadian Human Rights Tribunal sided with Johnstone, ruling that she had indeed been discriminated against, and the Federal Court dismissed the Attorney General’s application for a judicial review of the case, confirming that parental child care obligations fall within the scope and meaning of the ground “family status” in the Canadian Human Rights Act. Honourable Mr. Justice Mandamin, dismissing the Attorney General’s application for a judicial review in Canada v. Johnstone, stated,

…it is difficult to have regard to family without giving thought to children in the family and the relationship between parents and children. The singular most important aspect of that relationship is the parents’ care for children. It seems to me that if Parliament intended to exclude parental child care obligations, it would have chosen language that clearly said so.

In 2014, this decision was upheld at the Federal Court of Appeal, and it has since been cited in a number of cases in jurisdictions in Canada. But the laws on this still vary slightly across the country. For example, in New Brunswick, Family Status is not a protected ground, and in Ontario it covers only a parent–child relationship, although it applies to those who provide care to an elderly parent.

Caregiving accommodation reduces costs for employees and employers

Employer accommodation of care is not just about ensuring that human rights are recognized and respected – it can also help to mitigate the potential costs to employees and employers that could also result from caregiving. In a recent report, Janet Fast categorizes these costs to caregivers into three main categories: care labour, employment restrictions and out‑of‑pocket expenses.

Care labour costs for employees include time caregivers spend with the care recipient, time spent on behalf of the recipient (e.g. scheduling appointments), time spent getting to/from the recipient and time spent monitoring or managing care. Employment restrictions include reduced working hours or having to quit, experiencing decreased productivity and the resulting career limitations or reduced/forgone income. Out-of-pocket expenses include housing, community services, supplies and transportation that may also be incurred by caregivers.

It is estimated that every year, Canada loses the equivalent of nearly 558,000 full-time employees from the workforce due to the inability to manage the conflicting demands of paid work and care.

The costs faced by employees as a result of caregiving pose direct and indirect costs for employers. Direct costs to employers include higher turnover, absenteeism and additional benefit costs (e.g. health care claims and disability leave for caregiving employees). Indirect costs include reduced return on investment in employees, poorer on-the-job performance and resulting spillover effects to co-workers, supervisors, customers and clients. There are costs to the overall economy as well: in Fast’s report, it is estimated that every year, Canada loses the equivalent of nearly 558,000 full-time employees from the workforce due to the inability to manage the conflicting demands of paid work and care.

Organizations that support employees with family caregiving obligations can benefit in many ways. It can help them align corporate social responsibility (CSR) commitments and enhance their public image and organizational reputation. A growing body of research shows that employee productivity, job performance, recruitment and retention benefit from FWAs.

Many diverse approaches can facilitate family caregiving

Family caregiving situations are unique, shaped by the individuals providing and receiving care, the nature of the required care, the occupation of the working caregiver and the organizational culture of their workplace. As such, there is no “one-size-fits-all” solution.

There is growing literature about providing and facilitating FWAs. The Canadian Human Rights Commission published A Guide to Balancing Work and Caregiving Obligations, which outlines a number of FWAs that can facilitate accommodation, including telework; job sharing; different or shifting start and end times; compressed schedules; extended maternity or parental leave; shift changes; compassionate, discretionary or other leave to care for sick family members; leave to provide childcare or eldercare in unanticipated or emergency situations; part-time work with pro-rated benefits; and shifting or sharing work duties or tasks.

Family caregiving rates expected to grow

Caregiving is a common experience within (and between) families, regardless of where they live or where they are from. Accommodation of family caregiving is becoming increasingly relevant as families are getting smaller, Canada’s population ages and the resulting rate and complexity of disability increases. This emerging reality has raised concern about a growing “care gap” in Canada.

According to Statistics Canada, nearly half (46%) of Canadians from coast to coast to coast (13 million) have provided care to a family member or friend with a long-term health condition, disability or aging need at some point in their lives – 8 million (28% of the population) did so in 2012 alone.

Canada’s aging population is fuelling caregiving needs across the country. By 2030, seniors are projected to account for close to one in four people (up from 15.3% in 2013), and the number of centenarians is projected to grow from 6,900 to more than 15,000. Not only are there more seniors, but these seniors are living longer: average life expectancy at age 65 is 22.0 and 19.2 years for women and men, respectively (i.e. 87 and 84.2 years of age) – up from 19.0 and 14.7 years in 1981.

Senior care and eldercare is only a part of the portrait of care in Canada. Children are also primary recipients. This generation has seen a significant increase in dual-earner households – from 36% of couples with children in 1976 to 69% in 2014, three-quarters of whom have both partners working full-time. While this has increased family income, it has also meant there are fewer family members available to help manage work and family responsibilities.

Family caregiving is diverse and complex – just like families

Caregiving is diverse and complex, encompassing a wide range of activities. Statistics Canada’s General Social Survey on Caregiving and Care Receiving tracks a wide range of caregiving activities, including transportation, meal preparation, medical procedures, personal care, house maintenance and managing finances, but the list is not exhaustive. New and emerging issues, such as a spouse’s need to provide caregiving in support of their transgender partner’s medical transition or the need for a parent to appear in court regarding child custody and caregiving issues, can also remind us of the diverse variety of families and caregiving needs.

The fluid and evolving nature of care relationships between individuals can add another layer of complexity to our understanding of care. The care provided can vary in type, nature and duration, and it is shaped by the unique circumstances of the individual requiring care (see chart). Caregiving events can be short-term and episodic, such as if a family member experiences a temporary mobility restriction due to a broken leg. They can also be long-term and intensive, such as if a family member is living with a terminal illness in a palliative care centre.

Click to enlarge

Some care requirements are predictable, thus giving caregivers a higher degree of control over their time and resources, while other situations can be more complicated. Regardless of the type, nature and duration of care, family caregivers must integrate it with their work‑related obligations and commitments – a balancing act that can be supported and accommodated by employers.

Work–care reconciliation benefits families and employers

For nearly all Canadians, caregiving is inevitable at some point over the course of their lives. Since care provision is not always predictable and does not always arise outside working hours, employees and employers will need to reconcile work and care in creative ways that seek to maintain productivity and morale – indeed, failing to do so results in costs on all sides. Open communication and creative approaches to harmonizing work and care in a flexible manner can benefit employees, employers and the labour market in Canada as a whole.

“This is an issue that will touch millions of Canadians at some point in their lives and will become increasingly important with demographic change. The CHRC encourages employers, employees, and unions to seek collaborative approaches to enable people with family caregiving responsibilities to continue to participate fully and meaningfully in the workforce.”

David Langtry, Acting Chief Commissioner, Canadian Human Rights Commission, 2014

 


Nathan Battams is a writer and researcher at the Vanier Institute of the Family.

 

Caring Enough to Flex, Flexing Enough to Care

Sara MacNaull

 

Family members have multiple and often complex responsibilities, obligations and commitments at home, at work and in their communities. Families excel at finding adaptable and creative solutions, but as studies have shown, employed family members want their managers’ respect for their lives outside of work and need flexibility to effectively manage their many life roles.

Employed family members across Canada are increasingly requesting flexible work arrangements (FWAs) in order to provide care for immediate or extended family and friends. FWAs can greatly enhance a person’s ability to achieve work and life quality while providing care, whether it’s for a child, an elderly or ill parent, a sibling or spouse with a disability, or a close friend who is dealing with a chronic illness.

The care provided can vary in type, nature and duration (see chart), and is shaped by the unique circumstances of the individual requiring care. While some care requirements are predictable, thus giving caregivers a higher degree of control over their time and resources, other situations can be more complicated. For example, if an elderly parent or grandparent requires occasional daily care, a caregiver can plan in advance which care responsibilities (such as grocery shopping and yardwork) get done on particular days outside of work hours. On the other hand, palliative or end-of-life care can be very unpredictable and stressful for family members who have to navigate the health care system while grappling with the impact of the impending loss of a loved one.

Aging and Caregiving in Canada

13M people said they had been a caregiver to a family member or friend at some time during their lives.

Among family caregivers, 39% primarily cared for their father or mother, 8% for their spouse or partner and 5% for their child. The remaining (48%) provided care to other family members or friends.

Seniors are projected to account for approximately one-quarter of Canada’s population by 2036.

Source: Statistics Canada

When a family member experiences a sudden and/or unexpected illness or injury, such as a heart attack, stroke or torn ligament, family and friends jump into action to provide care and support. For employed caregivers, this may mean seeking out and approaching their supervisor or employer to explore FWAs for a predictable or an indefinite period of time. A manager’s or employer’s response can have a significant impact on families and family life.

Recent rulings from the Canadian Human Rights Tribunal have highlighted the complexity of family care needs and, consequently, the value of FWAs. The Tribunal has heard several cases where the need for flexibility to provide care was not accommodated and employers were found to have discriminated based on family status. According to the Ontario Human Rights Commission, family status refers to the “status of being in a parent and child relationship,” including diverse familial relationships that may not be bound by blood or adoptive ties but are centreed on care, responsibility and commitment.

The need for flexible or customized work arrangements and workplace accommodations based on family status will continue to increase as Canada’s population ages and the formal and informal care needs increase in response. Formal care refers to the paid services provided by an institution or an individual for a care recipient, while informal care refers to unpaid care provided by family, friends and volunteers. Often, a mix of formal and informal care is included in treatment or recovery plans. For those providing informal care, managing their own personal and family responsibilities and health care services accentuates the need for flexibility, as care demands are rarely static and tend to fluctuate over time.

Within the labour force, flexibility is often thought to be available only to managers or applicable to white collar workers or professions. However, a recent publication by the Families and Work Institute, Workflex and Manufacturing Guide: More Than a Dream, found that even in the manufacturing sector – which is often perceived as having rigid workplace requirements – a growing number of companies have found ways to accommodate their employees’ care needs. Such needs are now being met through creative and innovative FWAs, resulting in increased employee satisfaction and productivity.

One employer in manufacturing offered to pay for half of the fifth work day for employees who met their weekly goals, thereby allowing workers to use this as paid leave in half-day increments. Another employer focused on cross-training – training employees in multiple positions in the production process – as a way to increase overall flexibility and versatility among their workforce while ensuring that all stations remain covered to meet the continued needs of the organization.

With precarious employment, seasonal jobs or self-employment, flexibility may be inherently built into work. However, employees who are managing care responsibilities may be the ones paying a higher cost when it comes to lost wages due to absenteeism or reduced workloads.

Families are society’s most adaptable institution – a trait that is rooted in their constant need to adjust to ever-evolving environments. As organizations of all kinds consist of diverse family members, all of whom face unique realities, flexibility is key to the resiliency of families, the labour force and economy, and our greater society.

 


Sara MacNaull is responsible for Networks, Projects and Special Events at the Vanier Institute of the Family and is currently working toward earning the Work–Life Certified Professional designation.

The Health Care Experiences of LGBTQ+ Seniors

Laura Zuccaro

Updated on September 8, 2015

With 4.9 million Canadians aged 65 and older in 2011 and close to 6,000 centenarians, Canada – like many countries – is facing an aging population.((Statistics Canada, “Age and Sex Highlight Tables, 2011 Census,” 2011 Data Products, page last updated November 23, 2016. Link: .)) Many older Canadians are managing chronic or episodic illnesses, disabilities or conditions that make for frequent encounters with the health care system. When seeking medical attention, LGBTQ+ seniors face discrimination that can act as barriers to care. The main hurdles for LGBTQ+ seniors include identifying oneself as gay, lesbian, bisexual, transgender or queer, and experiencing discrimination.((Shari Brotman, Bill Ryan and Robert Cormier, “The Health and Social Service Needs of Gay and Lesbian Elders and Their Families in Canada,” The Gerontologist 43:2 (2003). Link: http://bit.ly/1ggcMmo.))

According to Statistics Canada, the use of the health care system (e.g. having a regular doctor, consultations with health care professionals and receiving preventive screening tests) by gay, lesbian and bisexual Canadians varies by sexual identity, and their health care choices differ from those of heterosexual seniors.((Michael Tjepkema, “Health Care Use Among Gay, Lesbian, and Bisexual Canadians,” Health Reports 19:1, Statistics Canada catalogue no. 82-003-X (March 2008). Link: .)) Many seniors only discuss their sexual orientation in relation to their care, and many service providers avoid discussing issues relating to sexual orientation when making care plans. Research performed at McGill University revealed a “don’t ask, don’t tell” passive approach toward revealing sexual orientation in the health care system.((Brotman, Ryan and Cormier.))

Many seniors only discuss their sexual orientation in relation to their care, and many service providers avoid discussing issues relating to sexual orientation when making care plans.

Many gay and lesbian seniors have support from their biological families and children and grandchildren; others rely on friends considered as family, also known as “chosen families” or “fictive kin.”((Brotman, Ryan and Cormier.)) Health care providers do not always understand this broad definition of family and therefore it is common for same-sex partners to identify themselves as friends or roommates in order to avoid being treated differently. This can often make it difficult for LGBTQ+ partners to show affection or be acknowledged as the patient’s spouse.

A number of studies on gay and lesbian seniors and their caregivers have found that they may experience both actual and anticipated discrimination via homophobic or heterosexist attitudes or policies in the health care system. Actual discrimination has been reported in hospital practices surrounding visiting hours, such as LGBTQ+ caregivers being denied acknowledgement as family members when seeking to visit their partners. Anticipated discrimination could affect seniors’ willingness to reveal their sexual orientation or even access services due to prior negative experiences. Both forms of discrimination pose a challenge to both the possibilities of self-identifying as a gay or lesbian senior and receiving appropriate care.((Shari Brotman et al., “Coming Out to Care: Caregivers of Gay and Lesbian Seniors in Canada,” The Gerontologist 47:4 (2007). Link: .))

In order to address the biases within the health care system, current research has suggested that specialized services designed to engage dialogue between gay and lesbian community health professionals and enhance integration would have a significant impact on the health care experiences of LGBTQ+ seniors in Canada.((Brotman et al.)) Such services would include training sessions for health care workers on the needs of gay and lesbian seniors; hiring gay and lesbian health care workers; using gender-neutral language in discussions about identity and relationships; ensuring confidentiality; specialized facilities (e.g. Kipling Acres, a long-term care facility and gay-positive environment that provides services to seniors in Toronto), support groups or telephone support lines; and community outreach programs. These services aim to reduce the barriers between LGBTQ+ seniors and their health care providers and improve health care interactions for both the care provider and the patient.

Laura Zuccaro is a second-year medical student at the University of Ottawa.


Originally published in Transition, Vol. 44, No. 3, in July 2014.

Updated on September 8, 2015

Timeline: 50 Years of Families in Canada

Today’s society and today’s families would have been difficult to imagine, let alone understand, a half-century ago.

Families and family life have become increasingly diverse and complex, but families have always been the cornerstone of our society, the engine of our economy and at the centre of our hearts.

Learn about how families and family experiences in Canada have changed over the past 50 years with our new timeline!

Suggested Reading: “‘I Don’t Have Time for This!’: A Compassionate Guide to Caring for Your Parents and Yourself”

By Katherine Arnup, PhD

Aging, illness and dying are realities that we all will face at some point, in our family circles and ultimately in our own lives. Despite this fact of life, most people in the Western world are hesitant to discuss this inevitable journey with our loved ones, despite the importance of these conversations in preparing for the future.

In her new book, “I Don’t Have Time for This!”: A Compassionate Guide to Caring for Your Parents and Yourself, award-winning author Dr. Katherine Arnup provides a thoughtful and informative guide to beginning essential conversations with our parents about the end of life, tools and strategies for caregiving, keys to releasing guilt and regret, advice about asking for and receiving help, and the positive impact that facing aging, illness and death can have on our lives (and those around us).

“Katherine Arnup has been able to capture the complexity of life and living in family relationships while guiding us gently through the inevitability of death and dying. Documenting both sides of the caregiving/receiving experience, this important and timely resource helps us summon the courage to have the sometimes difficult conversations with loved ones and service providers – and with ourselves. A validation for those who have been a part of an end-of-life experience and an inspiration for all of us who expect to be part of one in the future – even if it is only our own.” – Nora Spinks, CEO, Vanier Institute of the Family

To learn more about the family experiences of death and dying in the Canadian context, read Death, Dying and Canadian Families – a 2013 report by Dr. Arnup, published as part of the Vanier Institute’s Contemporary Family Trends series. This report explores the death denying/defying culture of the Western world and its implications for families in Canada while rooting the discussion in four key contexts: Canada’s aging population, the realities of chronic illness and the need for care, the gap between desires and reality regarding the location of death, and the impact on families and family life.

About Katherine Arnup, PhD

Katherine Arnup is a social historian, life coach and retired university professor. She is the author of the award-winning book Education for Motherhood: Advice for Mothers in Twentieth-Century Canada, editor of the first book on lesbian families in Canada (Lesbian Parenting: Living with Pride and Prejudice) and author of more than three dozen articles on marriage, motherhood, lesbian and gay families, aging, death and dying.