Personal responsibility for health in later life

Practices known as ‘self-care’ typically encompass preventative health behaviours as well as responses to infirmity (Dean Reference Dean1989; Morrongiello and Gottlieb Reference Morrongiello and Gottlieb2000). To care for themselves, older people often detect, diagnose and treat illness; seek help to engage in behaviours or activities that contribute to health; and maintain and promote functional independence (Craft and Grasser Reference Craft and Grasser1998; Ory, DeFriese and Duncker Reference Ory, DeFriese, Duncker, Ory and DeFriese1998). According to professional assessments, functional independence typically includes activities of daily living (ADLs) such as bathing and dressing, and instrumental activities of daily living (IADLs) such as cooking, cleaning and medication management (Ball, Perkins and Kemp Reference Ball, Perkins and Kemp2004).

Research attests to the importance of caring for oneself in later life, even as individuals receive support from others. Penning (Reference Penning2002) finds that older people who have more chronic conditions and impairments report higher levels of involvement in ADLs, IADLs and advanced activities of daily living (AADLs; e.g. yard work, taking medications, managing finances) than people who are considered healthy or able-bodied. Moreover, the receipt of formal care does not have a significant impact on the level of ‘self-care’ practised. These findings challenge the assumption that formal services ‘undermine self-reliance and personal responsibilities for care’ and that ‘self-care’ is higher among people who are able-bodied than those receiving support due to illness and impairment (Penning Reference Penning2002: 4).

Previous studies identify various ways that older people who are receiving care look after their own health, wellbeing and living environments. They might modify daily routines and activities to keep doing them alone, and assist care providers with certain tasks to demonstrate their involvement in care (Ball, Perkins and Kemp Reference Ball, Perkins and Kemp2004; Cox and Dooley Reference Cox and Dooley1996; Janlöv, Hallberg and Petersson Reference Janlöv, Hallberg and Petersson2005). These practices hold significant meaning: older people with illnesses and disabilities often feel that it is important to care for themselves to sustain continuity with valued identities and roles (Ball, Perkins and Kemp Reference Ball, Perkins and Kemp2004; Cox and Dooley Reference Cox and Dooley1996; Kemp, Ball and Perkins Reference Kemp, Ball and Perkins2013). Through care work, these individuals may represent and embody independence as a physical act. Loe (Reference Loe2010: 332), for instance, considers how women in their nineties care for themselves to ‘[accomplish] and [maintain] a broad sense of health that involves comfort, confidence, continuity, autonomy and social capital in the context of old age’.

Adopting a critical perspective, several authors consider how ideals of ‘healthism’, as well as neo-liberal discourses, shape older people's care activities. With healthism, the belief is that individuals can achieve personal wellness through lifestyle and behaviour modifications, and in some cases with therapeutic help (Crawford Reference Crawford1980; Hurd Clarke and Bennett Reference Hurd Clarke and Bennett2012). Ideals of healthism align with neo-liberal imperatives that are premised on a shift in caring responsibilities from the state to individuals. Neo-liberal policy frameworks typically emphasise self-management and personal control of chronic health conditions; individuals are expected to proactively ensure their own wellness (Moore, Frost and Britten Reference Moore, Frost and Britten2015; Morden, Jinks and Ong Reference Morden, Jinks and Ong2015). Higgs et al. (Reference Higgs, Leontowitsch, Stevenson and Jones2009), for example, explain how health discourses advise older people to undertake certain activities, such as exercise, to avoid the ‘hazards’ that have come to be associated with ageing. In such instances, older people with health and mobility limitations often consider care of the self to be a moral responsibility (Hurd Clarke and Bennett Reference Hurd Clarke and Bennett2012; Moore, Frost and Britten Reference Moore, Frost and Britten2015).

Ideals of independence and personal responsibility are equally evident in policy frameworks for later life care in Western, ageing societies. In line with broader philosophies of ‘ageing in place’, older people with chronic health conditions and disabilities very often live, receive support and care for themselves in the home setting (Wiles et al. Reference Wiles, Leibing, Guberman, Reeve and Allen2012). While models of home care vary, they typically emphasise ‘user choice’ (Colombo et al. Reference Colombo, Llena-Nozal, Mercier and Tjadens2011: 57) and the active participation of persons receiving assistance, as well as their family and friends, in care arrangements (Funk Reference Funk2013; Peckham, Williams and Neysmith Reference Peckham, Williams and Neysmith2014). Approaches such as person-centred care, for example, aim to share power among individuals involved in care relationships; respect and accommodate clients’ needs, perspectives and interests; and involve them in decision-making (Brookman et al. Reference Brookman, Jakob, DeCicco and Bender2011; Koren Reference Koren2010). Within such frameworks, a care provider's job is not necessarily to do things for clients, but rather to support them in their capacity to do as much as possible for themselves (Byrne et al. Reference Byrne, Frazee, Sims-Gould and Martin-Matthews2012). Within models of home care and social-cultural ideals of healthism alike, older people are encouraged to maintain personal responsibility for health and wellbeing.

This article considers how older people who are receiving formal and informal support care for themselves, and interpret and give meaning to these practices. While previous research has explored how individuals care for themselves in later life (Ball, Perkins and Kemp Reference Ball, Perkins and Kemp2004; Cox and Dooley Reference Cox and Dooley1996; Penning Reference Penning2002), less is known about how subjective meanings shift in relation to the receipt of home care as well as help from family and friends. I explore the dynamic relationship between individual care activities, the ideals of independence that underlie policy imperatives and socio-cultural discourses, and objective circumstances associated with access to social support, financial resources, and home care services.

Interview process

To gather data, I conducted intensive interviews with 34 people aged 65–100 who were receiving formal home care services in the Greater Toronto and Hamilton Area. Intensive interviews are understood as contextual and negotiated processes in which researchers and participants reconstruct their subjective worlds. These interviews ‘[permit] an in-depth exploration of a particular topic or experience’ from participants’ perspectives (Charmaz Reference Charmaz2006: 25). Intensive interviews with people who were receiving formal services allowed me to gain insights into the ways individuals who are considered ‘care recipients’ engage in and understand practices related to care of the self.

I used a semi-structured interview guide (Kelly Reference Kelly, Bourgeault, Dingwall and De Vries2010) to collect richly detailed information on participants’ experiences of caring for themselves and of receiving support. Rather than rely on existing definitions of self-care (e.g. assessing involvement in specific ADLs, IADLs or AADLs), I privileged the subjective meaning that these older people attributed to care, asking them broad, open-ended questions such as: ‘In your daily life, are there things you do to take care of yourself?’ Other questions focused on help received, such as ‘What do others do for you in a typical day?’ and ‘Can you describe what these people do when they are helping you?’ Participants’ discussions of their care practices and of support received were often closely entangled, demonstrating deep interconnections between receiving assistance and doing things for oneself.

I used a series of questions to guide the interviews but the structure was loose and conversational, allowing participants to share any information they felt was relevant (Holstein and Gubrium Reference Holstein and Gubrium1995). Throughout the conversation, I often felt as though individuals were trying to prove to me, as a researcher, that they were active and engaged in caring for themselves. They also occasionally asked me if I had any suggestions that would help them to manage their health better. Role conflict, where participants mistake researchers for health professionals, is common in interviews with people receiving home care (Locher et al. Reference Locher, Bronstein, Robinson, Williams and Ritchie2006). While I declined to provide advice, these conversations illustrate the extent to which these older people attempted to present a healthy and self-sufficient self within the social context of the interview. In doing so, they constructed ‘accounts’ of care that reflected their social interactions as well as their cultural, social and personal histories (Orbuch Reference Orbuch1997).

I recruited participants through multiple means, including: presenting at seniors’ groups and day programmes (12); a research associate at a home-care agency contacting clients directly (seven); home care case managers and supervisors distributing brochures (four); seniors’ ministries at religious institutions contacting members (three); distributing information at a care-giver exhibition (three); Meals on Wheels drivers distributing brochures (two); posting flyers in seniors’ housing and community centres (one); sending an e-mail through an LGBT seniors’ mailing list (one); and word of mouth (one). Most interviews took place in participants’ homes, except for two that I conducted via telephone at their request. Participants typically welcomed me into their home as a guest, often offering water, tea or coffee, and sometimes a snack. Many spent much time alone and commented that they appreciated the opportunity to act as a host. In these ways, the interviews often took the form of a social visit (van den Hoonard Reference van den Hoonard2005). While I interviewed most participants alone, in three cases family members were involved at the participants’ request. The interviews averaged one hour in length, were audio-recorded with consent and were professionally transcribed.

Data analysis

Data analysis involved the iterative stages of open, axial, and selective coding. To conduct open coding, I read and re-read entire transcripts to develop key concepts; for axial coding I related concepts to one another; and selective coding involved identifying the concepts that were most central to my interpretation of data and got to the heart of participants’ experiences (Corbin and Strauss Reference Corbin and Strauss2008). Constant comparison, which involved carefully considering differences in the meanings and contexts of incidents coded in the same way, was a key aspect of the analysis. Constant comparison made it possible to ‘discover variation as well as general patterns’ in the data at a more abstract level; moving from the particularities of everyday care practices to the meanings associated with them (Corbin and Strauss Reference Corbin and Strauss2008: 78). As I explored subjective experiences and interpretations of care, I considered the ideals of independence and dependence as sensitising concepts that ‘provided an analytic frame, serving as a point of reference and a guide in the analysis of data’ (Bowen Reference Bowen2006: 4). These ideals led me to consider the socio-cultural conditions in which participants were operating (LaRossa Reference LaRossa2005). In other words, though participants did not necessarily use the terms ‘independence’ and ‘dependence’, these concepts allowed me, as an analyst, to make sense of the data. Throughout the coding process I wrote memos and discussed emerging ideas with a colleague who was very familiar with the study. I used QSR International's NVivo 10 (http://www.qsrinternational.com/product), a qualitative analysis software package, to assist with data storage and retrieval.

Profile of participants

Of the 34 interview participants, 26 were women and eight were men. They ranged in age from 65 to 100, and the average age was 81. These individuals were from diverse class backgrounds. The majority (20 out of 34) had some university or college education, six had graduated from high school and eight had never completed high school. All were Caucasian. Although 21 were born in Canada, 11 had migrated from various parts of Europe, and two had moved to Canada from the United States. It is important to note that participants’ racial and ethnic characteristics do not reflect the population of the Greater Toronto and Hamilton Area, a highly diverse, multi-cultural region (Minister of Industry 2013).

Three-quarters of participants (26) had developed increased needs for assistance or health problems in later life. Heart conditions, chronic pain, arthritis and diabetes were some of the more common health problems reported. One-quarter of participants (eight) 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. In later life, these individuals had increasing care needs as their conditions worsened and sometimes intersected with other health problems. Due to ethical concerns regarding informed consent, I did not interview people with dementia.

Participants’ use of formal home care varied. Most (30) had undergone assessments and were deemed eligible for publicly funded services. Twenty-six participants relied solely on public home care, while five used a combination of public services and care they paid for out of pocket. Three people used only formal services they paid for themselves. In line with eligibility criteria for publicly funded home care (Ministry of Health and Long-term Care 2006), participants most often received help with personal care like bathing and dressing. Some also used home care for assistance with household tasks such as cleaning and cooking. Others still received home nursing for wound care, injections or administering suppositories.

Participants had varying levels of support from family and friends. The majority (21) were widowed, divorced, or never married and lived alone, while seven lived with spouses or intimate partners, and four lived with adult children. One participant lived with a niece and one with a live-in care provider. Some of these individuals discussed very positive relationships and received intensive, consistent informal support. Others had very few family members or friends who helped them, and sometimes described conflicting or abusive relationships with family.

Maintaining independence

Very often participants associated the capacity to care for oneself with personal control over present and future needs. In their everyday routines, these older people attempted to care for themselves as much as possible, to minimise their reliance on others, and to distance themselves from negative views of ageing such as passivity and powerlessness. Participants all received varying levels of formal and informal support, but in situations where they worked to sustain independence they asserted themselves as healthy people who were doing what was within their means to prevent health conditions from worsening and care needs from increasing as they grew older. At the same time, they downplayed their needs for help, presenting bodily dependencies as something that could be overcome through personal effort.

Participants often strove to control bodies that were starting to wear down as they took responsibility for specific care activities. Hannah, age 90, had been diagnosed with diabetes along with several other health problems including heart and thyroid conditions and sleep apnoea, and described how she exercised and took care of her feet to manage illness symptoms:

Hannah's activities can be understood in two interrelated ways. On the one hand, like many participants, Hannah undertook specific practices following the direction of health professionals, who advised her to self-manage her diabetes and related conditions (e.g. ‘they say you have to take care of your feet…’). On the other hand, Hannah's life circumstances shaped the high value she placed on self-sufficiency. As a single woman and a German immigrant who had worked full-time throughout her life and purchased her own home, taking in boarders to make ends meet, Hannah considered herself very independent. She wanted to remain mobile enough to get around her two-storey home, rather than accept more help or move to a nursing home:

Activities such as exercise were one way in which Hannah attempted to ‘handle herself’, or to preserve self-sufficiency.

Participants often described their health practices and household routines as essential not only to staving off future dependency, but also to minimising the perceived demands their care needs placed on others. Celia, who at age 71 suffered constant pain from rheumatoid arthritis and osteoarthritis, asserted that it was important to push herself every day and to resist relying on others – especially her adult children – for assistance with walking, personal care and chores:

Although Celia received some formal assistance with bathing and injections, she felt that accepting too much help, and depending on others such as her children, would worsen her physical and emotional health and thus place further limits on her wellbeing:

It is telling that when participants did not engage in certain activities, such as the exercises health professionals suggested, they often attributed it to their own laziness. They upheld that individuals were personally responsible for caring (or failing to care) for themselves, as neo-liberal discourses would suggest (Moore, Frost and Britten Reference Moore, Frost and Britten2015; Morden, Jinks and Ong Reference Morden, Jinks and Ong2015). Andy, age 75, had lived with Parkinson's disease for 25 years and felt that he generally took due responsibility for his own health and wellbeing, with an active lifestyle that included woodworking, walking, sports such as pool and golf, and spending time with his children and grandchildren. Andy admitted, though, that he did not always follow the exercise routine a physiotherapist recommended. Andy presented this as a personal failing despite health professionals’ advice:

To present an independent self, participants often compared themselves to others who, in their view, failed to take sufficient responsibility for health and wellbeing. In doing so, they constructed some boundaries between the ‘normal’ (Goffman Reference Goffman1963) or healthy self, and people who were at best lazy, and at worst personally responsible for poor health (see also Horton et al. Reference Horton, Baker, Côté and Deakin2008). Donald, who at age 70 lived in subsidised seniors’ housing, proudly explained that he took personal responsibility for engaging in health practices, including walking regularly, eating well and only consuming alcohol on occasion, to minimise his dependencies and, perhaps, the need to move to a nursing home:

Donald contrasted his healthy lifestyle, through which he worked to control his own ageing process, with the behaviour of his neighbours in subsidised seniors’ housing. These neighbours, in Donald's view, did not take due responsibility for their health. He indicated that this could limit their independence; for instance, as they relied on mobility aids rather than put the effort into walking and regular exercise:

The findings presented above illustrate how participants had internalised neo-liberal discourses, and attempted to align themselves with morally valued identities in later life. As they described efforts to self-manage health conditions and to care for themselves, they worked to minimise needs for more help and, by consequence, dependencies.

Engaging in care relations

When participants faced limits to physical self-sufficiency, many described how they engaged in certain activities to preserve an independent identity. Health practices and household routines did not simply represent the ability to do things alone, but rather the capacity to remain integrally involved in care. Here, the care-giving context influenced the meaning of independence. These individuals received formal and/or informal assistance that reflected their needs and preferences, and thus promoted a sense of ‘supported independence’ (Hale, Barrett and Gauld Reference Hale, Barrett and Gauld2010). At the same time, participants emphasised that it was both a personal choice and an obligation to work closely with care providers to show that they were not passively accepting assistance.

Ruth's words illustrate how individuals might reconcile the tensions between caring for oneself and accepting help. At age 73, Ruth had lost her vision due to complications from cervical cancer and had several related health problems. Ruth depended heavily on formal care providers and close friends for assistance with errands and household chores, and acknowledged the importance of this support: ‘I'm very lucky and so, I'm not falling apart because [I'm getting the help I need]’. At the same, Ruth indicated that the very reason others provided so much assistance was because she looked after herself:

The implicit connotation of this statement is that remaining active in one's own care not only minimises dependence, but serves as a moral justification for receiving help when it is needed. To ‘take care of herself’, Ruth took responsibility for personal tasks such as bathing and dressing, and actively co-ordinated her complex network of support from friends and formal care providers. For example, although Ruth was technically allotted publicly funded home care for assistance with bathing, she could do this alone and negotiated an arrangement where care providers helped with other tasks such as cleaning. Ruth also paid a friend who was short of money, whom she referred to as ‘her eyes’, for assistance with errands. This economic exchange allowed Ruth to accept help without feeling dependent.

It is important to note that social locations of advantage shaped Ruth's sense of independence. Not only did she have the financial means to pay a friend for assistance, but as a well-educated woman retired from a professional career and an active volunteer in the community, she had an in-depth knowledge of the resources available to older and disabled people. Economic and social capital thus allowed Ruth to access help while preserving autonomy.

Like Ruth, Norah accepted care at the same time as she presented an independent identity. Norah, age 68, had a lifelong disability, cerebral palsy, and was currently experiencing increased mobility limitations due to a foot wound and broken toe. Norah was acutely aware of her needs for help, stating:

At the same time, Norah advised that it was important to remain active in care, or to

In this regard, Norah was working to regain her physical capacities and, thus, greater (if not complete) self-sufficiency:

Norah had developed this moral position over a lifetime of being labelled as ‘disabled’, where she had fought to both access the support she needed and to assert herself as an independent adult capable of living alone:

Given these experiences, being ‘independent’ did not mean doing things completely alone, but rather, doing as much as possible within the context of help from friends, care attendants and visiting nurses.

Participants rarely discussed the support they received without explaining how they worked with others to accomplish tasks. Consider Ray, age 66, who was visually impaired, HIV positive, and suffered from several other health problems including diabetes and kidney disease. Ray lived with his partner Saul, and received formal services for help with administering injections and housework. Ray acknowledged his needs as well as his involvement in care as he discussed his relationship with Saul: ‘my partner looks after me a great deal. We share most of the house responsibilities’. For example, he described how he and Saul worked together to complete household tasks, in ways that emphasised Ray's abilities rather than impairments:

The activities illustrated above challenge dichotomous constructions of independence and dependence. Although participants received help, they explained how they remained involved in health practices and household routines to assert some level of self-sufficiency and to distance themselves from dependence – an identity that would compromise their sense of self. At the same time, individuals were better positioned to engage in care relations when they had supportive social networks and/or sufficient formal assistance. Good care, in other words, served to bolster a sense of independence.

Reaching the limits of independence

Some participants also described situations where formal and informal care failed to meet their needs. Rather than support independent identities, these arrangements led to increased feelings of dependency. Here, some individuals expressed little capacity to make meaningful choices concerning their practices and relationships with care providers. These struggles revealed feelings of powerlessness at the intersections of poor mental and physical health, restricted access to publicly funded home care and little informal support. In these situations, it was difficult for individuals to undertake care activities that represented the ideals of ‘health’ or ‘independence’.

Consider Angela, age 65, who had several chronic health problems including stomach tumours, herniated discs, arthritis and asthma. When asked about the things that she did to care for herself, Angela explained how she modified her bathing routines; taking a sponge bath instead of a shower. Angela indicated a need for more frequent assistance with a bath:

Angela needed to bathe at specific times to attend her frequent medical appointments, and because it was important to her to be presentable when she visited the hospital. Angela found a way to modify her bathing routine – having a sponge bath instead of a shower – to take responsibility for personal care. Modifying routines so that one may keep doing them alone can be considered a means of maintaining independence (Ball, Perkins and Kemp Reference Ball, Perkins and Kemp2004; Baltes and Baltes Reference Baltes, Baltes, Baltes and Baltes1990), but this interpretation does not accurately reflect Angela's experiences. Angela did not relate her care practices to independence because she had no choice concerning whether she preferred to bathe alone or to have assistance with this activity. Sponge bathing was a last resort, in the face of insufficient support.

Angela's experiences point to the limitations of personal responsibility for care, and can be understood in the context of social locations of disadvantage. While public services were insufficient, Angela lived on a fixed income and could not afford to pay for more home care. Furthermore, Angela felt unable to ask family or friends for assistance: her relationships with family were marked by a troubled childhood, with a history of family alcoholism and physical abuse. She had some close friends, but they had their own problems and were unable to help. As a single woman with a limited income and lack of family support, Angela felt that she had no choice but to care for herself, even as debilitating health conditions made activities like bathing difficult. More assistance with personal care could have alleviated some the struggles that Angela experienced.

Some less-advantaged participants also explained how inadequate support limited their engagement in health routines, such as physical exercise, that are considered to promote independence. Martha, age 67, knew that she should walk regularly to manage symptoms of cellulitis, chronic obstructive pulmonary disorder and diabetes. But Martha was afraid of walking alone and falling. In the past, a home care worker had accompanied her on walks down the hallway in her subsidised apartment building. Cutbacks to formal services, however, limited assistance with activities beyond basic personal and nursing care. Martha's present home care worker was not able or willing to help with walking. When asked if there were any things she felt that she should be doing to care for herself, Martha replied:

Martha chose not to walk alone because she felt it posed a risk to her safety and compromised her dignity:

To outsiders, Martha's lack of engagement in physical activity could appear as a sign of laziness. In reality, limited support constrained Martha's capacity to exercise, and by consequence, to maintain the able-bodiedness typically associated with independence. Publicly funded services did not support mobility, Martha had no money to pay for more care and although Martha's daughter provided some help, she did not understand her fear of falling:

Judy, age 75, also struggled to engage in the healthy behaviours that professionals recommended. Judy had been instructed to eat fewer carbohydrates to manage her diabetes. Yet, she struggled to prepare her own meals, and the care workers who visited her apartment in subsidised seniors’ housing were not allowed to cook. A sandwich, from Judy's perspective, was the only viable alternative, even if it went against diet advice for diabetics:

Contradictions between available home care services and advice regarding healthy lifestyles made it difficult for Judy to ensure her wellbeing. She indicated a limited capacity to make choices regarding her diet, and thus to act autonomously in the context of later life care.

These examples demonstrate that some participants had little ability to control or manage their health when they lacked sufficient support. Social conditions associated with restricted access to formal services, limited financial means and, in some cases, little help from family and friends, made it difficult to undertake care practices that are often upheld as positive examples of independence.