Caregivers’ failure to thrive: A case for health and continuing care systems transformation

Abstract

Excluding family caregivers and their goals from healthcare thinking and system design has contributed to their “failure to thrive.” Family caregivers are diverse, with dynamic, enduring, and variable life course care trajectories that are largely ignored. Using a co-design approach, caregivers prioritized their goals across seven life domains in an on-line survey. Physical, mental, and emotional health goals were top priorities across all ages. However, care-related goals were not caregivers’ highest priority. Goals related to financial well-being, social connections, employment, education, and care were variable across ages. Our findings suggest that transforming health and continuing care systems begins with recognizing variability of caregivers’ goals across their life courses. Adopting a co-design approach with family caregivers may serve as a model to develop a collaborative health and continuing care system. One that recognizes and supports family caregivers to achieve their goals, so that they not only survive but thrive.

Introduction

Caring for family members with illness, disability, or aging-related needs is a universal experience, transcending national, cultural, and economic circumstances. Moreover, family caregivers (note 1)¹ are acknowledged as central to sustainability of health and continuing care service sectors worldwide, in particular as a source of cost savings.^2,3 The care provided by family caregivers has been estimated to save the Canadian health and continuing care systems $66.5 billion annually.⁴ In the context of an aging society, and despite acknowledgements that family caregivers provide vital supports that enable older persons to age in place, Canada’s health and continuing care systems offer better supports to patients themselves than they do to the family caregivers on whom they rely.⁵ Viewing family care as a “private trouble,” and therefore not a public responsibility,⁶ has meant that systems are unable to recognize the heterogeneity of family caregivers and the diversity and magnitude of their contributions to their families and society more broadly.⁷ As a result, family caregivers have no claim on health and continuing care services in their own right (except those that arise from their own health problems).⁸ When health and continuing care systems assume that caregiving is a one-off event, and that their own work ought to focus on biomedical needs of care receivers, caregivers are no longer the “care partners” that service providers portray them to be.

In contrast, research suggests that caregiving is a dynamic, enduring, and variable experience. It can begin at different points in a caregiver’s life course, involve multiple episodes of care, can last over 30 years in total, and can be provided to a wide range of family members, friends, and neighbours. These variations create patterns that play out differently across different caregivers’ life courses.^9,10 Interactions between family caregivers and physicians have been shown to focus primarily on medical tasks.¹¹ This narrow focus on biomedical problems and “needs” of care receivers ignores not just the breadth and magnitude of family caregivers’ work but their emotional labour, their relationships, and their goals for their own lives.^10,12 Excluding family caregivers and their goals from healthcare thinking and system design has contributed to family caregivers’ “failure to thrive” as evidenced by reports of unmet needs¹³ and impacts on family caregivers’ own health, financial, employment, and social well-being that are universal.^14

–17 Arguing for a shift away from “needs” and toward “goals,” recent conceptual and empirical findings encourage healthcare professionals and service providers to expand their focus beyond the patient to also include family caregivers.¹²

Family caregivers also tend to overlook the sustainability of their own efforts until they have reached the end of their capacity, probably because their dealings with the health and continuing care systems have “trained” them to think that way.¹² Family caregivers often feel that the nature of their caregiving work and their own diverse support needs are invisible to the health and continuing care system.¹⁸ They feel health and continuing care providers view their care only as a cost-free resource with infinite capacity.⁵ Although older adults have voiced their strong preference for aging in place while not unduly burdening their families, public policy has failed to support these preferences. As a result, few formalized family caregiver supports are available. In fact, family caregivers are commonly denied formal support, with providers claiming the health and continuing care systems are too overburdened to provide family caregivers with services and supports that they see as essential to their own sustainability.¹⁹ Challenges with navigating complex systems of care and support are also at the heart of the disconnect between health and continuing care systems and family caregivers. These systems are difficult for family caregivers to access due to overly restrictive eligibility criteria, convoluted and repetitive application processes, and other gatekeeping mechanisms.²⁰ The added time and effort required to navigate these complex systems is yet another item on many family caregivers’ growing lists of roles and responsibilities.²¹

Shifting from caregiver needs to caregiver goals

One of the underlying drivers of systems transformation is to adopt inclusive rather than contentious language about “informal” or “unpaid” family caregivers that recognizes the complex nature of family caregiving and integrates family caregivers as central and equal members of the broader health and continuing care systems.²² This would require a shift from understanding the needs of caregivers that focus on their immediate care responsibilities to a more holistic understanding of their goals that span multiple domains of family caregivers’ lives. Leslie et al. argued that, unlike immediate care-related needs, goals are empowering and directed toward long-term, growth-focused, and multifaceted solutions rather than short-term, task-focused, and narrowly defined deficiencies.¹²

Caregivers have benefitted from individualized, innovative, and flexible approaches to assessment and support.^23
–25 Yet Canada remains “a country of perpetual pilot projects”²⁶ with promising program innovations facing many barriers to scaling up to their full potential.²⁷ The Naylor report concludes that “Canada’s healthcare systems sometimes look and feel as if they have forgotten who they serve.”²⁷ Findings from the current study provide both new knowledge and a strategy for reminding Canadian health and continuing care policy-makers and service providers whom it is that they do and should serve, by shifting the focus to respecting caregivers’ own goals.

Methodology

The findings reported here come from a more comprehensive project aimed at better understanding family caregivers’ needs. Our co-creation approach was rooted in the belief that the population of interest (ie, family caregivers) are equal stakeholders and contributors throughout the research project.²¹ Caregivers and organizations that represent them were involved in developing and beta-testing the survey instrument and recruiting a broad range of caregivers in Canada to complete the survey. Through this co-creation process with family caregivers, we learned that the concept of goals better represents what family caregivers seek to help them integrate their care work with other life responsibilities (such as raising children and maintaining paid employment). Thus, our survey intentionally took a broader, more proactive, and holistic perspective on family caregivers’ personal goals.

Data were collected using an on-line survey in which caregivers were asked about their goals in seven life domains which emerged from a systematic review of the literature: physical health, mental health and well-being, social connections, education, employment, financial well-being, and care-related goals (see Table 1 for a description of the items used to assess each of the core domains). The survey was completed by 590 family caregivers from across Canada. For this article, we analyzed data on weighted family caregivers’ rankings of the importance of these seven key domains, cross-tabulated by a categorical age variable as a crude proxy for life course stage. Domains with scores closer to 7.00 represent higher priority goal domains and scores closer to 1.00 represent lower priority goal domains. We selected age as a proxy for life course stage as a focal explanatory characteristic based on other recent work revealing distinct life course patterns of care experiences.^9,10,28

Table 1.

Goal priority domains and questions

Physical health

To get more sleep

To eat healthier meals

To get more exercise/activity

Formal education or career-related training

To stay in school

To be able to talk with my teacher/instructor about my care responsibilities

To better balance my education and care responsibilities

Employment

To keep my current job

To be able to talk with my supervisor about my care responsibilities

To better balance my job and care responsibilities

To learn about my employer’s responsibilities when it comes to helping me meet my care duties

Financial well-being

To meet my own monthly living expenses (rent, mortgage, bills, groceries

To manage existing debt

To save for my own retirement

To reduce financial hardship associated with caregiving

To learn more about government benefits that might offset the costs of care

Social well-being

To have more time for myself

To have a better relationship with my family members

To spend more time with my friends

To spend more meaningful time with the person I care for

To spend more time in places outside of where I provide care

Mental health and well-being

To cope better with my care situation

To feel less guilty about the care I provide

To worry less about the person I care for

To have a life outside of my care responsibilities

Goals related to relative or friend’s care

To provide more/better care to the person I care for

To know what to expect next so I can plan better

To know more about products and services that can help me

To be able to talk with other family members about sharing care responsibilities

To connect with others who can help me navigate my care journey

To better communicate and coordinate care with healthcare providers

The largest proportion of respondents resided in Ontario (38.1%), British Columbia (19.5%), Alberta (18.6%), and Quebec (13.7%). A substantial majority of respondents were women (76.5%) and most were retired (45.1%) or employed (32.5%). Few respondents were younger than the age of 25 (2.2%), 11.5% were aged 26-45, 15.4% were aged 46-55, 26.6% were aged 56-64, 31.2% were aged 65-74, and 13.1% were aged 75+. Compared to the nationally representative sample of caregivers captured by the 2012 Statistics Canada General Social Survey, Ontario caregivers are over-represented, as are women and caregivers aged 65+.²⁹

Findings

The first important observation is that care-related goals were not caregivers’ highest priority among “the things [they] want to accomplish as a person and as a caregiver.” As Figure 1 illustrates, caregivers’ own physical, mental, and emotional health were their highest priority goals, followed by goals related to financial well-being and social connections. Only then did care-related goals enter the picture. Interestingly, goals related to employment and education were lowest priority among this sample of caregivers, perhaps because it included few young caregivers and many who were retired.

Figure 1.

Family caregivers’ goal priority areas.

Findings also revealed several commonalities and differences in goal priorities of caregivers of different ages (as a proxy for life course stage; see Table 2). Family caregivers’ own physical, mental, and emotional health goals remained top priority areas for caregivers of all ages, with mental and emotional health goals being top priority only for caregivers <26 years.

Table 2.

Family caregivers’ goal priority areas by age group

Rank	<26, n = 13 (2.2%)	26-45, n = 68 (11.5%)	46-55, n = 91 (15.4%)	56-64, n = 157 (26.6%)	65-74, n = 184 (31.2%)	75-85+, n = 77 (13.1%)	Total, N = 590 (100.0%)
First	Mental/emotional health: 5.82	Physical health: 5.97	Physical health: 5.98	Physical health: 6.08	Physical health: 6.35	Physical health: 6.4	Physical health: 6.18
Second	Physical health: 5.42	Mental/emotional health: 5.85	Mental/emotional health: 5.92	Mental/emotional health: 5.91	Mental/emotional health: 6.03	Mental/emotional health: 6.08	Mental/emotional health: 5.94
Third	Financial: 4.71	Financial: 4.58	Financial: 4.57	Financial: 4.79	Financial: 4.95	Care related: 5.16	Financial: 4.78
Fourth	Social: 4.31	Employment: 4.52	Employment: 4.10	Social: 4.45	Care related: 4.60	Social: 5.00	Social: 4.33
Fifth	Employment: 4.00	Care related: 3.90	Care related: 3.97	Care related: 4.35	Social: 4.50	Financial: 4.88	Care related: 4.32
Sixth	Education: 3.78	Social: 3.78	Social: 3.88	Employment: 3.88	Employment: 3.64	Education: 3.80	Employment: 4.01
Seventh	Care related: 3.40	Education: 2.63	Education: 2.63	Education: 2.60	Education: 2.89	Employment: NA	Education: 2.95

NA: Not applicable

Financial goals remained high priority for all age groups with the exception of caregivers in later life, older than the age of 75. Closely related to financial goals are employment goals, which, not surprisingly, were a priority for caregivers in their prime employment years (age 26-55). Employment goals were lower priority in mid to later life (age 56-74), the stage of the life course now characterized by transitioning to retirement. Goals related to caregivers’ social connections were lowest priority among caregivers aged 26-55 but were higher priority in mid to later life.

Rankings of care-related goals were more variable across caregivers at different stages of the life course. Caregivers in the earliest life course stage (<26) gave these goals the lowest ranking. For caregivers age 26-55, care-related goals ranked fifth, after their own physical/mental health, financial, and employment goals. Mid-aged caregivers (56-64) also ranked them fifth, but behind physical and mental health, financial, and social goals. For caregivers at typical retirement age (65-74), care-related goals were higher priority, ranking behind physical and mental health and financial goals only. Lastly, caregivers aged 75+ prioritized care-related goals higher than all other age groups, behind only their own physical and mental health.

Overall, education and career-related training goals ranked lowest among caregivers’ goal domains regardless of age. However, few respondents were at an age (<26) where education and career-related training may be important.

Discussion and conclusions

The question remains how do we get health and continuing care systems to recognize variability of family caregivers’ goals across the life course so as to transform the way supports and services are designed and delivered? First and foremost, healthcare leaders must recognize that care-related goals were much lower priority to our sample of caregivers than is reflected in the current design of caregiver support policy and practice. Instead, physical, mental, and emotional health as well as financial and social well-being goals were consistently among caregivers’ highest priorities. Our findings are consistent with those from the most recent national survey of Canadian caregivers in which caregivers with unmet needs reported financial assistance (68%) and home care services (40%) as their most desired supports.¹³

Using age as a proxy for life course stage, our findings challenge a common assumption that caregiving is a one-off event that occurs for a relatively short period at a particular point in an individual’s life course. There is substantial evidence that caregiving can begin at any point in an individual’s life, may occur more than once, and may last for a few months or for 30+ years.⁹ The dynamic nature of caregiving through the life course and heterogeneity of caregivers’ goal priorities across life course stages must be acknowledged and accommodated by health and continuing care systems and by those in leadership and policy-making positions. Optimizing family caregiver supports to redress the very real consequences that family caregivers face³⁰ will require systematic identification, assessment, and response throughout the trajectories of both caregivers and care receivers.^31,32 It starts with breaking down existing barriers that deny caregivers’ status as clients of the home and continuing care system in their own right. A useful example here is the UK’s Care Act 2014 which not only conveys to caregivers the right to have their own needs assessed, and met, but commits to an explicit focus on caregiver well-being.³³

Parmar et al. found that, despite system reforms, the health and continuing care systems continue to operate in silos and focus narrowly on patient care with little attention paid to supporting caregivers.³⁴ The co-design approach we used to develop and execute our study may serve as a model for a way forward for health and continuing care system reform. By involving caregivers from the outset, our attention shifted from caregiver needs to caregiver goals and we were able to engage the caregiver community throughout the research process. Adopting the same approach to system transformation would require governments and other stakeholders within the healthcare sector to work together to develop a truly collaborative health and continuing care approach that recognizes, includes, and supports family caregivers as equitable partners in care so that they not only survive but thrive.^23,24

A current example can be found in the Change Foundation’s efforts to give caregivers a voice in re-designing Ontario’s healthcare system so that it better supports caregivers as well as patients.³⁵ Based on their first experience using a co-design approach to creating an integrated health system, they concluded that there are enormous benefits to engaging patients and caregivers as a community norm, including impactful changes in “healthcare usage rates, patient experience ratings and communication between patients and providers.”³⁶ That is, transforming the health and continuing care systems begins with a human-centred design approach.

Footnotes

Authors’ note

This study received ethics approval from both the Conjoint Faculties Research Ethics Board at the University of Calgary and the Human Research Ethics Board 2 at the University of Alberta.

Acknowledgments

The authors wish to thank AGE-WELL NCE (Work Packages 2.4, 2.9 and 2.11) and Huddol for their collaboration on this article as well as the Canadian Caregiver Network, CARP (the Canadian Association of Retired Persons), Carers Canada, Caregivers Alberta, Early Onset Dementia Alberta, the Canadian Home Care Association, Young Caregivers Association, CapitalCare Edmonton, Vanier Institute of the Family, and the University of Alberta Department of Human Ecology for their support in recruiting caregivers to complete the survey.

Funding

This work was supported by the AGE-WELL Network Centres of Excellence (NCE).

ORCID iD

Andrew Magnaye

Note

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