As a result of neoliberal policies, which have effectively shifted responsibilities for care away from the state and onto families and individuals, home care strategies in Canada now regard family members as “partners in care” or as the primary care providers to older people living with chronic health conditions and disabilities (Funk, Reference Funk2013; Martin-Matthews, Sims-Gould, & Tong, Reference Martin-Matthews, Sims-Gould and Tong2013; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). Across Canada, publicly funded home care services provide personal and clinically related care as well as some homemaking, but these services are rarely designed to meet all of individuals’ needs for health and social care. Rather, family members and friends, often referred to and relied upon as “informal” carers, give the majority of support to older people in Canada (Keefe, Reference Keefe2011). Footnote 1 Estimates suggest that nearly 90 per cent of Canadians who receive care at home are supported by family and friends, and that about half of these individuals also receive some formal home care (Sinha & Bleakney, Reference Sinha and Bleakney2014).
Given the heavy reliance on unpaid care within home care policies and practices, researchers have developed several models that address how the receipt of formal home care impacts on family/friend care and vice versa (Cantor, Reference Cantor1979; Reference Cantor1991; Chappell & Blandford, Reference Chappell and Blandford1991; Greene, Reference Greene1983; Kemp, Ball, & Perkins, Reference Kemp, Ball and Perkins2013; Litwak, Reference Litwak1985; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). Extant research on the relationship between formal and family/friend care, however, tends to overlook older people’s everyday experiences at the intersections of systems of care (but see Allen & Ciambrone, Reference Allen and Ciambrone2003; Porter, Ganong, Drew, & Lanes, Reference Porter, Ganong, Drew and Lanes2004). On the basis of a grounded theory study that involved 34 qualitative interviews, I explore older people’s experiences at the intersections of formal and family/friend care. Their experiences are considered against the policy backdrop of restricted access to publicly funded home care services and a reliance on family members as “partners in care”.
Context
Neoliberalism and Home Care
A neoliberal ethos guides the structure and delivery of home and community care services throughout Canada (Armstrong, Reference Armstrong, Braedley and Luxton2010; Neysmith, Reference Neysmith and Neysmith2000). Reflecting a decline in the welfare policies that were predominant in the mid-twentieth century, neoliberal governance is premised on a shift in responsibility for health and social services from the state to individuals (Breheny & Stephens, Reference Breheny and Stephens2012; Rose, Reference Rose2000). Rather than providing services directly, states often “govern at a distance” to reduce spending on a variety of services. States encourage personal and familial responsibility for health and well-being as well as the development of private and market-oriented organizations that are controlled through “techniques of accountability such as centrally set but locally managed budgets, and the practices of evaluation and auditing” (Rose, Reference Rose2000, p. 324). Fears about looming fiscal crises in a global economy, as well as the so-called economic drain of a population living longer with chronic conditions and disabilities, may be considered rationales for limiting older people’s entitlements to health and long-term care (Gee, Reference Gee, Gee and Gutman2000; Weicht, Reference Weicht2013).
In alignment with this neoliberal ethos, home care services throughout much of Canada are provided through a mixed-market model of service organization and delivery (Aronson, Denton, & Zeytinoglu, Reference Aronson, Denton and Zeytinoglu2004; Martin-Matthews et al., Reference Martin-Matthews, Sims-Gould and Tong2013). In Ontario, publicly funded home care services are contracted out from the government to a variety of for-profit and non-profit agencies that provide services directly; to access these services, individuals with needs for care must meet certain assessment criteria (Ontario Association of Community Care Access Centres, 2014). Reflecting the emphasis on family and individual responsibility, the stated goal of formal home care is to complement – but not to replace – the care that family and friends provide (Canadian Home Care Association, 2013). Family members are often depicted as “partners in care”, and home care organizations may provide support and education for family carers (e.g., Brookman, Holyoke, Toscan, Bender, & Tapping, Reference Brookman, Holyoke, Toscan, Bender and Tapping2011). Individuals and families with the financial means or with private insurance may also elect to purchase care from a burgeoning private home care industry. Individuals need not undergo assessments to determine eligibility for private home care services, but, rather, may choose the amount and type of services they receive from the available options. Footnote 2
Recent research has demonstrated how family members are increasingly relied upon as primary care providers in policy documents as well as in practice, giving insight into the demands that current policies place on the families of people who are receiving home care. In a context of reduced supports, case managers must increasingly communicate to clients and families that they are expected to take responsibility for providing care themselves and that they cannot expect formal care services to play an intensive role in care provision (Peckham, Williams, & Neysmith, Reference Peckham, Williams and Neysmith2014). Paradoxically, policy documents and service providers tend to convey the message that it is at the same time a moral imperative and a personal choice to keep an older relative at home (Funk, Reference Funk2013). Critics argue that such messages obscure the broader goals of cost containment that underlie home care policies. In reality, the lower costs of home care are often borne out by unpaid carers, most often women, who take on significant responsibilities for caring for older people and for navigating a complex home care system (Keefe, Reference Keefe2011; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003).
The Relationship between Formal and Family/Friend Care
Researchers have developed several models that address the relationship between formal home care and family/friend care (see Table 1). As Ward-Griffin and Marshall (Reference Ward-Griffin and Marshall2003) explained, some conventional models reflect the interests of service providers and aim to show how family members might effectively complement formal care to reduce health care costs (e.g., Chappell & Blandford, Reference Chappell and Blandford1991; Greene, Reference Greene1983). Other models are more critical and shed light on inequalities in care provision and on the invisibility of the care provided by (mostly female) family members (Kemp et al., Reference Kemp, Ball and Perkins2013; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003).
Table 1: Models of the relationship between formal and family/friend care
The four predominant “conventional” models date back several decades and examine the partnerships and division of labour between formal and family/friend care providers (Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). The hierarchical compensatory model (Cantor, Reference Cantor1979; Reference Cantor1991) suggests a preference for spousal care followed by care from children or other relatives, with formal care serving as a replacement when family or friends are unavailable. The substitution model (Greene, Reference Greene1983) posits that formal care results in a decline in family/friend care. The task specificity model (Litwak, Reference Litwak1985) suggests that formal and family/friend care providers perform different tasks, and that the nature of the task determines the source of care. Finally, the complementary model (Chappell & Blandford, Reference Chappell and Blandford1991) finds that formal care supplements – but does not replace – family/friend care, and that it is typically used when care recipients’ needs exceed the caring capacities of family or friends. Although there is limited empirical support for the first three models (Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003), several studies support the complementary model (Chappell & Blandford, Reference Chappell and Blandford1991; Davey & Patsios, Reference Davey and Patsios1999; Denton, Reference Denton1997; Penning, Reference Penning2002).
Critics argue that these “conventional” models are outdated and are limited because they (1) consider formal and family/friend care as distinct rather than intersecting systems; (2) assume the effectiveness of partnerships between formal and family/friend care providers; (3) neglect the gender dynamics of care work (Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003); and (4) do not account for the full array of systems and individuals involved in care arrangements (Kemp et al., Reference Kemp, Ball and Perkins2013). The emphasis on family care as preferable to formal care may also reflect the priorities of professionals and policymakers – who work in a context that tends to focus on cost reduction – rather than the interests of care providers (Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003) or of persons receiving care (Kemp et al., Reference Kemp, Ball and Perkins2013).
In alignment with the criticisms just raised, two critical approaches have emerged more recently and consider the intersections between formal and family/friend care in socio-structural contexts. First, Ward-Griffin and Marshall’s (Reference Ward-Griffin and Marshall2003) socialist-feminist model views “female caregiving as highly skilled emotional, mental, and physical work that crosses “public and private” boundaries” (p. 204). Ward-Griffin and Marshall’s (Reference Ward-Griffin and Marshall2003) framework recognizes the interlinkages between public and private spheres, the gender dynamics and power relations involved in care work, and the ways political, social, and economic circumstances, such as cutbacks to services in a market-modelled system, shape the distribution of care work. Empirical research using the socialist-feminist model finds that complex intersections exist between formal and family care work. Nurses and family carers may develop dynamic relationships that change over time, and nurses’ tasks are often transferred to family carers (Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). Although Sims-Gould and Martin-Matthews (Reference Sims-Gould and Martin-Matthews2010) did not use the socialist-feminist model explicitly, they similarly considered how family carers “share the care” with formal care providers. Examples are when family carers prepare meals in advance of formal care providers’ visits, or when formal care providers leave notes for family carers (Sims-Gould & Martin-Matthews, Reference Sims-Gould and Martin-Matthews2010, p. 417).
The second critical model suggests that formal and family/friend care providers and persons receiving care are all involved in “convoys of care” (Kemp et al., Reference Kemp, Ball and Perkins2013). This model builds on Kahn and Antonucci’s (Reference Kahn, Antonucci, Baltes and Brim1980) convoy model of social relations, which suggests that convoys, or dynamic networks of personal relationships, are mechanisms for distributing and exchanging social support. A convoy of care includes all of the people, including formal and family/friend carers, who provide an individual with health care, socio-emotional support, monitoring, advocacy, and help with activities of daily living and instrumental activities of daily living. Convoy members can change over time and “may or may not have close personal connections to the recipient or to one another” (Kemp et al., Reference Kemp, Ball and Perkins2013, p.18). Structural and environmental characteristics of the care setting; power dynamics associated with gender, class, race/ethnicity, health, and age; and the personal characteristics of convoy members all influence the relationships among people who are involved in care activities. In the convoy of care model, individuals directly involved in care relationships are conceptualized as active participants who engage in negotiations in socio-structural contexts.
The aforementioned models represent important advances in critical understandings of the relationship between formal and family/friend care. Yet, extant models tend to overlook the experiences and perspectives of older people in need of care – despite the fact that these individuals are positioned at the intersections of formal and family/friend care arrangements. There are a few notable exceptions suggesting that the constructs of “formal” and “informal” care are artificial and may not reflect the experiences of persons receiving care (Allen & Ciambrone, Reference Allen and Ciambrone2003; Porter et al., Reference Porter, Ganong, Drew and Lanes2004). Rejecting the “formal/informal” dichotomy, Porter et al. (Reference Porter, Ganong, Drew and Lanes2004) suggested a new typology based on qualitative interviews with older widows who receive care in their homes: the regular helper, the can-will doer, the on-call helper, and the mainstay. Based on research with persons receiving care, Allen and Ciambrone (Reference Allen and Ciambrone2003) similarly found that formal care providers sometimes take responsibility for needs such as emotional support that are typically met by family members or friends, whereas family members sometimes take on traditionally formal roles, such as that of case manager.
With the exception of these few studies, gaps in extant research leave us with a limited understanding of the relationship between systems of care and of the everyday realities of the older people around whom systems of care are organized. More research is needed to (a) extend knowledge on the relationship between formal and family/friend care, and (b) better understand how policy contexts impact on the experiences of older people in need of care.
Methods and Data
Interpretive Grounded Theory
This study formed a part of the author’s doctoral thesis research undertaken in 2014–2015, which used interpretive grounded theory to explore older people’s experiences at the intersections of formal home care, family/friend care, and self-care (Barken, Reference Barken2015). Grounded theory was originally developed as a methodology for generating theoretical concepts that “fit” (are applicable to) and “work” (are relevant to) the empirical settings under investigation (Glaser & Strauss, Reference Glaser and Strauss1967). Since its inception, multiple versions, understandings, and uses of grounded theory have emerged (Oleson, Reference Oleson, Bryant and Charmaz2007). On the one hand, objectivist variants seek to develop deterministic predictions and explanations of a universal reality (e.g., Glaser, Reference Glaser1978). On the other hand, the more recent interpretive and constructivist variants – which formed the bases for this study – emphasize understanding rather than explanation; view data as situated, social constructions that emerge throughout the research process; and acknowledge the existence of multiple realities (Charmaz, Reference Charmaz2006; Corbin & Strauss, Reference Corbin and Strauss2008). Drawing on interactionist sociology, interpretive grounded theorists “study how – and sometimes why – participants construct meanings and actions in specific situations” (Charmaz, Reference Charmaz2006, p. 130, emphasis in original). In this study, I used interpretive grounded theory to conduct and analyse interviews with older people using home care.
Theoretical Sampling
Following ethics approval from the McMaster Research Ethics Board, I used a theoretical sampling framework to recruit participants. Theoretical sampling, a key aspect of grounded theory, involves “sampling on the basis of concepts derived from the data” (Corbin & Strauss, Reference Corbin and Strauss2008, p. 65). I identified emerging concepts throughout data collection, and then recruited participants whose experiences might present variations to further develop concepts and ultimately lead to theoretical saturation – that is, the point at which additional data cease to provide new insights (Charmaz, Reference Charmaz2006; Corbin & Strauss, Reference Corbin and Strauss2008). For example, I noted that participants who were financially comfortable had different experiences of care than those who had meagre financial resources. To obtain a theoretical sample, I distributed flyers and brochures at subsidized seniors’ housing, places where people on low incomes might live.
In the end, I arranged for various means of recruitment, including (a) presenting at seniors’ groups and day programs; (b) a research associate at a home care organization contacting clients directly; (c) seniors’ ministries at religious institutions contacting members; (d) home care case managers and supervisors distributing brochures; (e) posting flyers in seniors’ housing and community centres; (f) distributing information to potential participants at a caregiver exhibition; (g) Meals on Wheels drivers distributing brochures; (h) sending an e-mail through an LGBT seniors’ mailing list; and (i) word of mouth. All participants were age 65 or older, lived in the Greater Toronto and Hamilton Area, and received formal home care services for ongoing support with daily activities such as bathing, dressing, housework, or clinically related care. I excluded people who were receiving formal care on a short-term basis (less than two months) for acute conditions, as well as people with dementia or cognitive limitations due to ethical concerns regarding their ability to understand the interview process and provide informed consent.
Data Collection
I collected data through intensive interviewing, an interviewing technique that “permits an in-depth exploration of a particular topic or experience” from the perspectives of research participants (Charmaz, Reference Charmaz2006, p. 25). Intensive interviews are understood as contextual and negotiated processes in which researchers and participants reconstruct their subjective worlds (Charmaz, Reference Charmaz2006). Although I used a semi-structured guide to elicit participants’ experiences of care, the interview structure was loose and conversational, enabling participants to share any information they felt was relevant. I used probes to inquire further about specific viewpoints and experiences; for example, I often asked participants to describe in more detail their perceptions of receiving support from family and friends. Participants often discussed their experiences of care within a broader life context; relating it to what else it enabled them to accomplish, their relationships with family and friends more generally, and their experiences of growing older.
The interviews lasted between 21 minutes and two hours, with the average length being 56 minutes. With participants’ consent, each interview was audio-recorded and professionally transcribed. Interviews took place in participants’ homes, with the exception of two that were conducted by telephone at participants’ requests. I conducted most interviews with individual care recipients. One married couple participated in an interview together. In three cases, family members participated in the interview and assisted with providing answers at participants’ request. I assigned pseudonyms for all participants, which are used in the findings section.
Data Analysis
Following Corbin and Strauss’ (Reference Corbin and Strauss2008) principles of interpretive analysis, I conducted open, axial, and selective coding. Open coding involved breaking the data apart to identify concepts; axial coding involved relating concepts to one another; and selective coding involved identifying the concepts that were most central to the final interpretation of the data (Corbin & Strauss, Reference Corbin and Strauss2008). To conduct open coding, I read each interview transcript very closely and assigned words or short phrases (i.e., codes) to the concepts presented in the interviews. I then conducted axial coding to build process into the analysis. This involved asking theorizing questions of the data in order to consider the contexts and contingencies of incidents within each code as well as the relationships between codes. Here, I undertook a constant comparative analysis to identify similarities and differences among incidents coded in the same way (Corbin & Strauss, Reference Corbin and Strauss2008). For example, one code that I identified during open coding was “feeling in control of home care”. Axial coding involved considering whether feelings of control differed between participants who were paying privately for home care and participants who were receiving publicly funded home care. Finally, during selective coding, I identified the core concept that represented participants’ experiences of formal and family/friend care, as well as processes that illustrated dimensions and variations of the core concept. I used QSR International’s NVivo 10 (http://www.qsrinternational.com/product), a qualitative analysis software package, to facilitate data storage and retrieval throughout the coding process.
Trustworthiness
Although interpretive research is subject to multiple interpretations, I used three strategies to ensure that the analysis was trustworthy – that is, that it is a fair and credible representation of participants’ experiences of care (see Corbin & Strauss, Reference Corbin and Strauss2008). First, I conducted negative case analysis throughout the iterative processes of gathering and analysing data, and refined emerging concepts accordingly (Creswell, Reference Creswell2013). I carefully considered negative cases, which represented variations in emerging concepts, to provide a holistic interpretation of participants’ experiences. Second, I conducted member checking to assess the credibility of findings from the perspectives of both participants and practitioners in the home care field (Corbin & Strauss, Reference Corbin and Strauss2008; Creswell, Reference Creswell2013). I distributed a lay summary of the study’s findings to participants and professionals who assisted with recruitment. Although I did not request feedback directly, some participants and professionals commented that the findings accurately reflected their experiences of receiving care or their observations from working in home care. Finally, I present rich, thick descriptions of research findings, including details on participants’ backgrounds and living circumstances. With an in-depth understanding of participants’ experiences, readers may come to their own conclusions about the credibility of the data and its transferability to other settings (Erlandson, Harris, Skipper, & Allen, Reference Erlandson, Harris, Skipper and Allen1993).
Profile of Participants
Of the 34 participants included in this study, 26 (76.4%) were women and eight (23.5%) were men. Participants ranged in age from 65 to 100, with the average age being 81. All participants were White. Although 21 (61.8%) were born in Canada, 11 (33.3%) had migrated from various parts of Europe, and two (5.8%) had moved to Canada from the United States. All participants lived in the Greater Toronto and Hamilton area. Participants were from diverse class backgrounds. Twenty (58.8%) had some university or college education, six (17.6%) had graduated from high school, and eight (23.5%) had never completed high school (see Table 2). Footnote 3
Table 2: Demographic profile of participants
Participants’ health problems or impairments were complex and diverse. Three quarters of participants (n = 26) had developed increased needs for care or health problems in later life. Heart conditions, chronic pain, arthritis, and diabetes were some of the more common health problems among participants. One quarter of participants (n = 8) had long-term disabilities and chronic health conditions that began earlier in life (roughly before the age of 60), ranging from cerebral palsy to Parkinson’s disease to HIV. Participants received formal care from various sources: the majority of participants (n = 30; 88.2%) had undergone assessments by Community Care Access Centre case coordinators and were deemed eligible for publicly funded home care services. Of these 30 participants, five paid for some home care privately, in addition to receiving publicly funded home care. Three participants (8.8%) used only formal home care for which they paid privately.
Participants also had varying levels of support from family and friends. The majority of participants, (n = 21; 61.8%) were widowed, divorced, or never married and lived alone, while seven (20.6%) lived with spouses or partners, and four (11.8%) lived with adult children. One participant lived with a niece, and one other with a live-in home care worker. Some participants discussed very positive relationships and received consistent, high levels of support from family and friends, while others had very few family members or friends who helped them, and sometimes had experienced conflicting or abusive relationships with family.
Findings
The core concept derived from the data analysis was reconciling tensions between care needs and concerns about burdening others, in the context of available home and community care. Contrasting with policies that encourage partnerships with family members, findings suggest that participants’ experiences of care were shaped first and foremost by their strong desires to retain a sense of independence and to avoid placing too many demands on family and friends. As the following quotes illustrate, these concerns were often framed in terms of the responsibilities that younger generations faced as they balanced careers, childcare, and sometimes health problems of their own (see also Peters, Hooker, & Zvonkovic, Reference Peters, Hooker and Zvonkovic2006):
I don’t want to go with my children. It’s not because my children aren’t nice; no, I don’t want to bother … they have their own life, their own family. (Celia, 71)
But she is also working and she found out she has a blister in the brain, too. So I don’t want to aggravate her … you know, elderly people have to realize, you can only so much ask the children. (Lise, 81)
My nieces live far away … I sometimes wish they lived closer and could do a little more shopping for me. I don’t like to call them where, you know, they’re so far away … but I survive. I have enough. (Beth, 82)
Although concerns about burdening others were common, participants had diverse formal and family/friend care arrangements. As illustrated in Figure 1, the following four processes account for diversity in experiences of care, and demonstrate variations of the core concept reconciling tensions: (1) turning to formal home care as a first choice, (2) coordinating networks of formal and family/friend support, (3) engaging in relations of reciprocity, and (4) struggling with unmet needs. Against the backdrop of available home and community care, contextual dimensions that framed experiences of care included access to financial resources as well as support from family or friends. These contextual dimensions highlight the opportunities afforded to some older people with financial means and strong networks of support, as well as the constraints that some older people with low incomes and limited social support may experience. Taken as a whole, the core concept reconciling tensions and the related processes underscore the emotional and practical challenges that older people may encounter vis-à-vis policy discourses that emphasize family responsibility for care.
Figure 1: Experiences of formal and family/friend care
Turning to Formal Home Care as a First Choice
Although participants often enjoyed close and supportive relationships with family members, they did not want established family relationships to spill over into the work of care. Participants attempted to use formal home care services as much as possible, and given the limited availability of publicly funded home care, they often relied on private home care services to complement or serve as an alternative to public home care. The process of turning to formal home care as a first choice was therefore typically only available to participants who had access to financial resources and/or insurance plans to purchase home care services privately. As such, this process highlights inequities in access to care within the current policy context. Social locations of privilege, and in some cases life course experiences that resulted in increased coverage for health and social care, afforded some individuals access to formal care that extended beyond publicly provided services. These participants tended to consider support from family members to be a choice rather than a necessity.
The examples of Joe and Fannie, and of Suzanne, illustrate how participants turned to formal care to mitigate the perceived burdens that their care needs placed on family. Joe and his wife Fannie clearly asserted that they preferred to receive formal care, and food from Meals on Wheels, rather than to ask their children to help with cooking and cleaning. As Holocaust survivors, the costs for additional home care services such as Meals on Wheels were covered by compensation claims from the German government (Claims Conference, 2012). Joe and Fannie’s adult children lived nearby, and the couple enjoyed regular visits with them. Yet, when asked if there were things they liked, or things they would like to change about their relationships with their children, Fannie replied:
And, with the kids, I mean, if I would tell them that, “Please cook us meals,” they would, but it’s not the same. We love them, okay, and they love us and I don’t think it’s reasonable to ask them to do that, okay? (Fannie, 83)
Suzanne also turned to formal home care as first choice, and to do so she drew on her considerable financial means and hired a live-in companion to help with various tasks that ranged from bathing and dressing to cleaning her home, to walking her two dogs, to driving her to appointments and events. Although Suzanne (twice divorced) enjoyed occasional visits with her children and grandchildren, she clearly asserted her preference to pay for someone to provide care. She felt that it was unfair and unrealistic – for both older people and for their adult children – to expect families to take on caring responsibilities. Yet, Suzanne recognized that most people did not have the financial means to pay privately for a live-in companion and had few options but to turn to family; perhaps moving in with them and relying on them for financial support:
You see I’m really one of the very few fortunate people. I have a person that lives here with me. And so I have all the help I need to get from A to B … you know, this thing of the family’s looking after their parents … many of them are not in the same city. And they may not have room. And also the worst part is that the parent often, I would say, doesn’t want to go. I mean I just think that would be a nightmare to be made to go and live with the children, and think you’d have any independence at all. It’s something that should be much more in the hands of the sick person than in the hands of the family. And because often people treat elderly people very, very badly and very rudely, especially when they’re all of a sudden in their house. That awful thing of money becomes “Well, who’s paying for you?” You know, “Who’s doing this?” (Suzanne, 80)
Coordinating Formal Home Care and Family/Friend Care
When participants coordinated care, the complementary relationships or partnerships between formal and family care that are espoused in policy discourses did indeed exist in practice. Here, participants actively engaged in relations of support with formal care providers as well as family or friends. To reconcile their care needs with their concerns about burdening others, participants carefully made choices about when, where, and from whom they received care. In doing so, participants maintained a sense of autonomy and independence even as they received support from others. Similar to examples where participants turned to formal care as a first choice, participants tended to coordinate care when they were in relatively privileged social locations: They often drew on social advantages related to their knowledge of community resources, strong and supportive relationships with family and friends, and sometimes financial resources that enabled them to pay for additional supports. Moreover, participants tended to coordinate care when they had the physical, cognitive, and social capacity to play a more active role in their care arrangements.
Consider, for example, Ruth’s and Phillip’s experiences of care. Although Ruth was technically allotted publicly funded home care for bathing, she directed her own care: Because she could bathe alone, Ruth arranged for the home care worker to use the time allotted for bathing to help with household tasks, such as cooking and cleaning, that were difficult for her to do alone since she had lost her vision. Complementing this formal support, Ruth relied on a wide circle of very supportive friends for help with transportation, shopping, and chores. Ruth also had the financial means – acquired throughout the course of her career as a business professional – to pay someone to clean her condominium. As the following quote demonstrates, Ruth expressed a sense of autonomy at the intersections of formal home care and relations of support with friends and family members:
They [home care worker] can do some shopping for you … It’s very rare that I ask her to do that but today I forgot to ask anyone [friends] to pick it up … she would have run out and done it. She does whatever I need … even my cleaning lady who of course, I pay … she knows that I have a thing about my place looking really good. (Ruth, 73)
Coordinating care also involved thinking and planning ahead to ensure that one would have access to sufficient care in the future if changes in health status, ability, or access to care were to arise. Ruth’s words illustrate her active involvement in arranging her own care, and her efforts to avoid relying too heavily on friends:
I’m already thinking, for instance, if I lose the [publicly funded] support worker … what will I do for food when my vision gets worse. I’m already thinking, if this friend, you know, moves or goes somewhere … I’m starting to work it all out. … .(Ruth, 73)
Phillip similarly expressed considerable autonomy when he explained how he was actively involved in coordinating care to mitigate the perceived demands that his care needs and those of his wife placed on others. Phillip needed support for some physical health problems, but he also considered himself to be a carer for his wife Kathryn, who had dementia. Phillip felt that various individuals – including his daughter and both publicly and privately paid care providers – worked well together to ensure that he and Kathryn received the support they needed to continue to live together at home. Through the use of both public and private home care, Phillip avoided placing too many demands on his daughter even though he appreciated the support that she regularly provided. Phillip pointed to the convergence of family and formal care when he explained the support that he and his wife, Kathryn, received from their daughter and from formal care workers:
My nurse daughter is a fabulous help to us. She gives one day a week; every Thursday, she gives her day to come here and she’s a very practical girl, being a nurse. She sees things to do, she helps us every Thursday and usually we go out and have lunch with two of the girls [home care workers] and Kathryn on that day, as well. (Phillip, 84)
To negotiate this complex, intersecting network of care, Phillip saw himself as a manager and drew on the skills as well as the financial means that he had gained throughout his career as the owner of a construction company: Footnote 4
I was a builder all my life, forty-one years, I told you; so my whole life has been managing … managing … and now, with all that management experience, I’m managing a flock of girls; I’ve got about seven girls and I’m managing everything and it’s my nature. (Phillip, 84)
Phillip’s care arrangement illustrates the blurred boundaries that sometimes exist between paid and unpaid, or family and formal care (see also Allen & Ciambrone, Reference Allen and Ciambrone2003; Ward-Griffin & Marshall, Reference Ward-Griffin and Marshall2003). On the one hand, Phillip’s daughter used her professional nursing skills to provide family care, while on other hand Philip regarded the privately paid home care workers as family. Phillip’s experiences of care were shaped by the relationships that he developed with these individuals and the extent to which he felt he could rely on them. Phillip relied heavily on formal care workers because he paid them and was in a position of relative power, whereas he restricted support from his daughter to one day a week out of recognition that she had other work and family responsibilities.
Engaging in Relations of Reciprocity
Participants also explained how they engaged in relations of reciprocity or gave back to family members to mitigate the perceived burdens associated with their care needs (see also Allen & Wiles, Reference Allen and Wiles2014; Lewinter, Reference Lewinter2003). Reciprocating enabled participants to conceptualize care as a part of the “give and take” of family relationships that are based on mutual support and exchange (Martin-Matthews, Reference Martin-Matthews, Gee and Gutman2000, p. 75). The experiences of Maggie and Martha illustrate reciprocity in terms of both financial and social support. Maggie paid her son-in-law to drive her to run errands. This allowed her to accept help without feeling guilty about asking too much of her son-in-law, and to retain some control over when she received assistance with transportation:
And my son-in-law is excellent and I just give him a cheque the first of every month because then I don’t feel so embarrassed. He’s embarrassed taking the cheque but I would much rather give him something per month and then say “Oh, I really need to go to Wal-Mart. Would you just drive me up there?” And we have that errand done, and I don’t have to be concerned about it. (Maggie, 89)
Martha lived on a fixed income and, unlike Maggie, did not have the means to pay family for assistance. Still, she demonstrated reciprocity through the provision of social support. While Martha’s family helped to clean her apartment and run errands on a regular basis, she looked after her great-granddaughter every day after school. Although Martha’s mobility was limited due to cellulitis and chronic obstructive pulmonary disease, she could still look after children in her family:
From four ‘til seven, I sit here and read then my great-granddaughter comes and I look after her … because she’s six so she pretty well does everything for herself; it’s just having somebody in the house with her. (Martha, 67)
Struggling with Unmet Needs
The three processes identified thus far underscore participants’ autonomy and active involvement in care arrangements. Through the process of struggling with unmet needs, however, some participants expressed a sense of powerlessness and constraint. These individuals had needs that exceeded the publicly funded home care services they were allotted, yet had few economic or social means to access additional support. As these participants contended with mental and physical health conditions, restricted access to publicly funded home care, and small networks of support from family and friends, it was often difficult for them to make meaningful choices regarding their care arrangements. When participants had unmet needs, some felt that they had no choice but to turn to family to fill in gaps in care provision. Here, some participants expressed a sense of guilt or ambivalence about relying on family and friends for significant help and would have preferred to receive more formal home care. Some participants also discussed how they struggled to care for themselves when they had needs that exceeded both the formal home care they were allotted as well as the caring capacities of their families and friends. In a context where policy discourses emphasize family responsibility for care, participants who were contending with worsening health problems and impairments, and lacked family support as well as the financial means to purchase care privately, experienced certain disadvantages and constraints in their care arrangements.
Consider the experiences of Rosa and Yolande. Rosa felt that the formal home care she received was inadequate, and therefore relied heavily on her daughter Megan for support:
Megan does all of it; she does all my shopping; she does all my medication and she’s always busy bringing me pads and diapers and toilet paper and Kleenex and she does all she can do … she’s very worn out … She can be angry, too, but I don’t blame her. (Rosa, 93)
Rosa felt guilty about the demands that her care needs placed on Megan, but felt that she had no other choice due to the limited availability – and sometimes the poor quality – of the publicly funded home care she received. When asked if she needed more help with anything, Rosa replied, “you know if I say anything my daughter will kill me … it’s the cleaning.” Rosa felt that she could not ask for more help because Megan was already doing so much, and that she could not voice complaints about home care services for fear that she would sound too demanding. Rosa faced challenges with regards to her relations of support with formal and family care providers because of her various physical and mental health problems, with which she struggled on a daily basis, and because of limited social support. Unlike some other participants who had large, complex networks of support, Rosa only had regular assistance from her daughter. In cases such as Rosa’s, family members took on significant responsibilities for care – not because these participants preferred to receive support from family, but simply because no other options were available to them, given restricted access to publicly funded home care.
Yolande also had needs that exceeded the formal home care she was allotted and lacked the financial means to purchase additional care. Yet, unlike Rosa, Yolande did not have strong support from family or friends. In the face of limited support, Yolande struggled to clean her apartment and run errands:
Yolande: Every two weeks, they [home care workers] come in for twenty minutes.
They wash my floors and they clean the bathroom and if there’s a few dishes, they’ll do the dishes and that’s it.
I: Okay.
Yolande: I don’t get anything else. I’ve asked for more help but … see, I don’t know if you’ll notice on the floor, there’s a lot of marks.
I: Hmm.
Yolande: That was all black marks and I had … I had to get down on my backside and scrub them because they won’t do that. Yeah. She [case coordinator] said I’d get an hour every two weeks but they’re in and out of here like nothing. Because I keep things clean; I don’t like dirt.
I: Sure, yeah.
Yolande: I keep clean as much as I can and usually, after I’ve done what I did here, I’d be in bed for three days. (Yolande, 72)
In addition to limited access to home care services, Yolande could not turn to family in times of need. She had raised five children alone after leaving an abusive husband, but only three of her children were still alive and none provided regular support. Yolande also lived on a fixed income and could not pay for additional help herself. Despite policy discourses that both assume and encourage family involvement in care, Yolande indicated that she had no other choice but to clean her own apartment and to run errands alone. Engaging in these tasks actually exacerbated the physical pain that Yolande experienced.
Discussion
Reconciling Tensions: Contributions to Previous Research
The purpose of this grounded theory study was to theorize older people’s experiences at the intersections of formal and family/friend care arrangements. The core concept derived from qualitative interviews with older persons receiving home care was reconciling tensions between care needs and concerns about burdening others, in the context of available home and community care. Through four processes – turning to formal home care as a first choice, coordinating networks of formal and family/friend support, engaging in relations of reciprocity, and struggling with unmet needs – participants attempted to reconcile the tensions between their needs for care and their concerns about placing undue demands on family and friends. Although the findings presented here underscore older people’s profound concerns about relying on family for care, it is important to note that many participants had close relationships with family and friends. Still, participants wanted to maintain some boundaries between established family relationships and the work of caring. This finding is consistent with other Canadian and international research, which suggests that older people typically prefer formal care for long-term care needs (Kemp & Denton, Reference Kemp and Denton2003; Pinquart & Sörensen, Reference Pinquart and Sörensen2002).
The concept of reconciling tensions builds on research that explores the relationship between formal and family/friend care in important ways. Consistent with the few other studies that similarly consider the perspectives of persons receiving care, findings suggest that participants engaged support from various sources, beyond the specific tasks that are commonly associated with either formal or family/friend care (see also Allen & Ciambrone, Reference Allen and Ciambrone2003; Porter et al., Reference Porter, Ganong, Drew and Lanes2004). For example, some participants developed family-like relationships with formal care providers, although in other cases family members took on the roles that are typically the responsibility of formal care providers. Yet, while Porter et al. (Reference Porter, Ganong, Drew and Lanes2004) suggested that dichotomies between formal home care and family/friend care are artificial because they do not reflect the perspectives of older people in need of care, participants in this study clearly considered formal home care and family/friend care to be distinct systems. Footnote 5 They were well aware of the limited availability of publicly funded home care, and they perceived that younger generations were facing challenges as they balanced multiple work and family responsibilities. As such, participants accounted for the potential and actual limits of both formal and family/friend care as they reflected upon their care arrangements.
The concept of reconciling tensions accounts for the subjective meanings and practical challenges that older people may encounter at the intersections of formal and family/friend care arrangements, against the backdrop of home care policies that encourage partnerships with family members. In doing so, this concept reaches beyond conventional models that consider the impacts of formal care on family/friend care and vice versa (i.e., the hierarchical compensatory, substitution, task specificity, and complementary models). Insofar as the concept of reconciling tensions accounts for socio-structural contexts that frame expectations and experiences of later life care, it aligns with, and extends, critical models of the relationship between formal and family/friend care (i.e., the socialist feminist and convoys of care models).
Providing an important critique of policies that emphasize family members as “partners in care”, Ward-Griffin and Marshall’s (Reference Ward-Griffin and Marshall2003) socialist feminist model considers how cutbacks to formal home care can result in a transfer of care work to family members. Yet, while Ward-Griffin and Marshall’s (Reference Ward-Griffin and Marshall2003) research focusses on the experiences of community nurses and family care providers, the concept of reconciling tensions considers the experiences of persons receiving care themselves. Current policies might indeed represent a transfer in care work to family members, yet the findings presented here suggest that older people receiving care may resist this emphasis on family care due to profound concerns about the perceived demands that their care needs place on others. Given the stigma and shame often associated with dependency (Breheny & Stephens, Reference Breheny and Stephens2012), participants’ attempts to reduce demands on family and friends may be understood as a way to maintain a sense of independence in the face of chronic health conditions and impairments.
The concept of reconciling tensions also aligns with Kemp et al.’s (Reference Kemp, Ball and Perkins2013) convoys of care model. Both studies consider people who are receiving care, as well as formal and family/friend care providers, to be active participants who engage in care relationships in socio-structural contexts. Kemp et al. (Reference Kemp, Ball and Perkins2013) outlined several factors that influence the experiences and actions of convoy members, including broader values about personal and family responsibility for later life care, policies that guide the delivery of home and long-term care services, and socio-structural relations of inequality associated with age, class, gender, and race/ethnicity. To date, however, the convoys of care model has been developed and applied through research on assisted living in the United States – a context that differs substantially from that of home care in Canada (Kemp et al., Reference Kemp, Ball and Perkins2013; Perkins, Ball, Kemp, & Hollingsworth, Reference Perkins, Ball, Kemp and Hollingsworth2013). The concept of reconciling tensions may be used to extend the convoys of care model through an in-depth consideration of the contextual dimensions that frame older people’s experiences of formal and family/friend home care arrangements, in Ontario, Canada.
In this study, contextual dimensions that framed participants’ experiences of care included access to financial and social resources. With financial means, as well as strong networks of support from family and friends, many participants were able to find a balance of formal and family/friend care that reflected their needs, preferences, and timelines. In some cases, however, participants’ experiences of care were marked by a sense of powerlessness and constraint. They either struggled to care for themselves, or turned to family to fill in gaps when formal home care was insufficient. These participants’ experiences illustrate how “old age” and “impairment” can intersect and lead to particular challenges for those with limited financial means and social support. In the context of restricted access to home and community services, it was especially difficult for participants on low incomes, or with small or nonexistent networks of family support, to access the kinds of care they needed or wanted. As such, findings suggest that the neoliberal emphasis on family and individual responsibility for care may be especially detrimental to older people in disadvantaged social locations.
Implications for Policy and Practice
The findings presented in this article point to some of the gaps that currently exist in Ontario’s home care system, and may be used to support the development of policies and practices grounded in the experiences of older people. Other research has considered the challenges and constraints that family carers often face as they attempt to balance care for older relatives with paid work, childcare, and other responsibilities (Hooyman, Browne, Ray, & Richardson, Reference Hooyman, Browne, Ray and Richardson2002; Keefe, Reference Keefe2011), coupled with the distress associated with unpaid care work (Health Quality Ontario, 2016). Extending this critique, the findings presented here suggest that the heavy emphasis on family care may also be problematic for some older people in need of care. Policies that assume family members’ involvement in care may result in challenges and constraints in particular for some older people with small or nonexistent networks of family support, and who lack the financial resources to purchase additional care services privately. Accordingly, this research provides evidence for the development of home care policies that do not assume high levels of family support but ensure consistent, continuous home care services for all people who are in need.
At the level of direct service provision, these findings have implications for the development of person-centred and relationship-centred care – approaches that increasingly guide the delivery of home care services in Ontario and across Canada (Brookman, Jakob, DeCicco, & Bender, Reference Brookman, Holyoke, Toscan, Bender and Tapping2011). Key aspects of person-centred care include sharing power among individuals involved in care relationships; respecting and accommodating the needs, perspectives, and interests of persons receiving care; and involving them in decision-making. Relationship-centred care, moreover, hinges on strong, mutually beneficial relationships between and among persons receiving care, family members, and care providers (Beach et al., Reference Beach, Inui, Frankel, Hall, Haidet, Roter and Williamson2006; Brookman, Jakob, et al., Reference Brookman, Holyoke, Toscan, Bender and Tapping2011). Research findings may inform practice guidelines that are person- and relationship-centred insofar as they account for the meanings that older people attribute to formal and family/friend care, and their subsequent experiences and actions within socio-structural contexts. Recent research illustrates how case managers in Ontario’s home care system consider the availability of family care providers when designing care plans (Peckham et al., Reference Peckham, Williams and Neysmith2014). It could be useful for case managers to account not only for the objective availability of family care, but also to consider older people’s subjective perceptions about relying on family. This could help to ensure that formal care services are provided in ways that reflect the needs and desires of older people in need of care.
Limitations and Future Research Directions
Although the concept of reconciling tensions has important implications for theory, policy, and practice, its usefulness is limited should we apply it to theorize the intersections of gender, race, and class for experiences of care. This study was limited in terms of ethnic and racial diversity. Some participants had migrated to Canada from various part of Europe, but all participants were White. Although I have devoted attention to the significance of social and financial resources, which may be considered in relation to class, this study did not fully explore class differences in experiences of care. Finally, gender and sexuality were not focal points in this analysis.
To address these limitations, several lines of inquiry could be developed on the basis of findings from this study and explored in future research. It is notable that all of the participants who expressed a sense of powerlessness in their care arrangements were women. Older women tend to have lower incomes than men (Denton & Boos, Reference Denton and Boos2007; McDonald & Robb, Reference McDonald and Robb2004) and are also more likely to live longer with chronic health conditions and disabilities. By consequence, older women are more likely to be widowed and lack support from a spouse. Having often provided care throughout their lives, older women might also be more sensitive to the challenges that their family members are facing as they balance multiple roles and responsibilities. It is therefore unsurprising that some older women experienced challenges and constraints with regards to their care needs. Future research could further explore the salience of gender relations, and their intersections with other social locations of inequality such as class and race or ethnicity, for experiences of later life care.
This study finds that participants did not want to place too many demands on family and friends, but it is noteworthy that family/friend carers do continue to play an important role in supporting older people (Keefe, Reference Keefe2011). In fact, estimates suggest that approximately half of older people receiving care in Canada rely entirely on family, friends, or neighbours (Hoover & Rotermann, Reference Hoover and Rotermann2012). This study explored the experiences of people currently receiving formal home care; older people who receive only family/friend support may express different opinions and concerns regarding their care arrangements. It is also possible that older people with dementia would express different concerns about the demands that their care needs place on family. Further research is necessary to better understand the viewpoints and experiences of individuals with diverse care arrangements and with varied health conditions and impairments. Finally, in addition to considering greater diversity in experiences of care, the findings presented here could also be extended through a critical analysis of home care policies. This could contribute to greater insights into the tensions and contradictions that can exist between policy discourses and lived experiences of care.
Conclusion
The core concept of reconciling tensions between care needs and concerns about burdening others, in the context of available home and community care, was developed to theorize older people’s experiences at the intersections of formal and family/friend care arrangements. Participants’ experiences of care may be understood at least in part as an outcome of their efforts to reconcile conflicting expectations surrounding later life care – between self-sufficiency on the one hand, and family responsibility on the other hand. The four processes outlined in this article illustrate how participants’ access to financial and social resources can lead to opportunities and constraints in experiences of care. These findings give insight into the socio-structural and policy contexts that frame older people’s experiences of care and, in turn, have implications for the relationships that exist between and among individuals involved in care relationships. Moreover, these findings highlight the limitations of policy discourses that take for granted older people’s capacity and willingness to access family support, and point to where policy adjustments can be directed to equalize access to care. Home care policies that ensure more consistent levels of formal home care, and practices that carefully consider older people’s concerns and challenges with regards to family support, may help to mitigate the challenges and constraints that some older people face at the intersections of formal and family/friend care arrangements.
