We share the care: family caregivers ... - Wiley Online Library

Health and Social Care in the Community (2010) 18(4), 415–423

doi: 10.1111/j.1365-2524.2010.00913.x

We share the care: family caregivers’ experiences of their older relative receiving home support services Joanie Sims-Gould

PhD, RSW

and Anne Martin-Matthews

PhD

Department of Sociology, University of British Columbia, Vancouver, BC, Canada

Correspondence Joanie Sims-Gould Department of Sociology University of British Columbia 6303 NW Marine Drive Vancouver BC V6T 1Z1 Canada E-mail: [email protected]

Abstract Although both family care and home support are considered essential components of home-based health-care, the experiences of family caregivers who have a relative in receipt of home support services are not well understood. Little is known about what aspects of home support services assist family caregivers or hinder them in their caregiving. This study examines family member’s experiences of the home support services received by their elderly relatives. Based on a previous Canadian study of contributions in family caregiving, we developed a conceptual model for understanding multiple contributions in caregiving. The present study used this conceptual model to guide the analysis of data from in-depth interviews with family caregivers (N = 52), completed August 2007–April 2008, who have or had an older relative in receipt of home support services in British Columbia, Canada, in the previous 12 months. Verbatim transcripts were read, re-read and independently coded by three members of the research team to identify common themes. Themes relating to direct care (care provided directly to the elderly person) and assistive care (care provided to one caregiver by another) were identified. In discussing the direct care provided by workers, family members emphasised dissatisfaction with instrumental assistance provided by home support workers while also stressing the importance of affective assistance. In commenting about assistive care there were three key themes: caring together, care management, and quality assurance and monitoring. In conclusion, the important role of home support in providing relief for caregivers is highlighted and implications for caregiver policy are discussed. Keywords: care of elderly people, family caregiving, health and social care, home care Accepted for publication 05 January 2010

Introduction Homecare is an expanding sector of healthcare delivery in many countries around the world (Hall & Coyte 2001, McClimont et al. 2004, Broese van Groenou et al. 2006, Stone & Dawson 2008). Overall population ageing, combined with a strong desire to ‘age in place’, creates an increased likelihood that many elderly people will use homecare. In Canada, home-care costs have doubled over the past decade, from 1.6 billion to 3.4 billion Canadian dollars (Canadian Institutes for Health ª 2010 Blackwell Publishing Ltd

Information 2007). It is currently estimated that 1.2 million people in Canada use home-care services annually (Carrie`re 2006). Similarly, in the United States, there were approximately 7.2 million discharges from homecare in 2000 (CDC ⁄ National Centre for Health Statistics 2009). Home-care work involves a variety of paid workers with different levels of training and qualifications. They include nurses, social workers, physiotherapists, occupational therapists, and home support workers. Most home-care workers provide direct care or home support. These workers provide non-professional services in the 415

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form of personal assistance with daily activities, such as bathing, dressing, grooming, and light household tasks. While some of the responsibility for care of older adults comes from paid home-care services, individuals and families are the cornerstone of home health-care (Canadian Home Care Association 2008). There is a substantial body of literature that discusses the importance of partnerships between formal (paid) and informal (family) systems of care (Lyons & Zarit 1999, Penning & Keating 2000, Ward-Griffin 2002, Brereton & Nolan 2003, Ward-Griffin & Marshall 2003, Wiles 2003, Guberman et al. 2006, Stone & Dawson 2008). However, the bulk of this research focuses on professional formal care providers such as nurses, physicians, and social workers. This research also emphasises the macro system partnerships between government, professionals, and consumers (Glendinning 2002, Hudson 2002). Wiles’ (2003) study of the experiences of family caregivers with formal support is an exception. Although she focuses predominantly on non-professional care (such as home support), her emphasis is on macro system level issues, not on the dynamics of the relationship between individual workers and family members. In her conclusions, Wiles (2003, p. 205) emphasises that family caregivers experience home support as a ‘constantly negotiated process’ and that it is an important area for further enquiry. Soodeen et al. (2007) conducted one of the few recent studies on experiences in homecare from the perspective of older physically impaired individuals and their caregiving spouses. In their study of nine caregivingcare recipient couples they identify the importance of a trusting relationship between paid and unpaid carers. However, they do not explicitly examine the relationship dynamics between paid workers and family members. Similarly, Woodward et al. (2004) examine the perspectives of stakeholders (clients, workers, family caregivers) with a focus on continuity of care in homecare. They discuss attributes of care most important to continuity but place more emphasis on findings from physicians, case managers and clients and less on the interaction between home support workers and family caregivers. While the relationship between formal and informal care has been clearly established in the literature, there have been few published studies beyond those mentioned above that examine the relationship dynamics between home support workers and family caregivers. There is a body of research that shows that the tie between home support workers and clients is important and that home support workers and clients can develop a set of familial-like expectations and bonds that extend beyond the role of a paid employee (Karner 1998, Piercy 416

2000). However, there is a missing piece in this literature: the voice of family caregivers. An integral step in advancing understandings of caregiving is an examination of the contributions of, and interfaces between family caregivers and paid home support workers. Home support is the only type of health service that can in theory provide exactly what family members provide and vice versa. Studies on the delivery of home support services have shown that the affective aspects of care delivery are, as or more important than the instrumental aspects of care (Martin-Matthews & Sims-Gould 2008). A deeper understanding of the relationship between the two systems of care will improve our knowledge regarding the strengths and limitations of each system. It will also help provide insight into ways to enhance their integration and complementarities. This study examines the contributions and the dynamics between family caregivers and home support workers. The research was guided by two key objectives: 1 To extend our understanding of the salient issues in delivery of home support from the perspective of family caregivers. 2 To examine the contributions and dynamics between family caregivers and home support workers.

Guiding conceptual model Despite significant advances in family caregiving research over the past 25 years, the bulk of research has remained focused on the relationship between one primary caregiver, usually a wife or adult daughter, and a care recipient (Fast et al. 2004, Sims-Gould & MartinMatthews 2007a,b). This focus has generated a body of research on individual caregiver stress and burden, but has done little to advance knowledge and understanding of the roles, responsibilities and relationship dynamics when multiple individuals contribute to the care of an older person. Two exceptions are Kahn & Antonucci’s (1981) convoy model and Cantor’s (1979, 1991) social care model, both of which move beyond the assumption of a single caregiver. The models depict caregiving as occurring within a care system, composed of multiple individuals. Although these models extend understandings of family caregiving beyond the care giver–care recipient dyad, they do not examine how multiple individuals assist one another in their work as caregivers. To improve our understanding of how caregivers both provide care to a care recipient and to one another, Sims-Gould & Martin-Matthews (2007b), based on empirical research, developed a conceptual model to include the interactive nature of care provision. In the ª 2010 Blackwell Publishing Ltd

Family caregivers’ experiences

Direct care Home support workers

Older person receiving care

Assistive care Primary caregiver

worker is providing assistive support to the family caregiver. This conceptual model is intended to capture the multiple contributions within a caregiving system, in particular around assistive care. The model shows the bidirectional nature of care, that it is not merely given, but it is interactive. This study examines the dynamic and intertwined nature of family care and paid care in the delivery of home support to older people.

Caregiving

Methods Assistive care Caregiving Direct care

Figure 1 Contributions in caregiving.

present study, the model is not being tested, but rather it serves as a conceptual guide. The diagram in Figure 1 shows the distinction between two types of contributions not previously identified in research: direct care and assistive care. The dotted arrow in Figure 1 highlights the care given by a primary caregiver (usually a family member) to the older person, typically called ‘caregiving’. Direct care, represented by the solid black arrow, is care given to the older person by another caregiver, in this case a paid home support worker. The dashed arrow highlights assistive care provided by one caregiver to another caregiver. For example, assistive care could include a family member preparing a meal and placing it in the fridge so that it is ready for a paid caregiver to come in and heat up for a care recipient. In this way the family caregiver is providing assistive care to the home support worker. Assistive care could include a home support worker leaving a note for a family caregiver regarding an observation during a visit. In this way the home support

Setting and recruitment The data for our study were generated through in-depth semi-structured interviews with 56 family caregivers from August 2007 to April 2008. Upon ethics approval from the University of British Columbia, family members were recruited through a variety of methods including advertisements in two local newspapers, distributing study pamphlets to local caregiver groups and through home-care agencies. Interviews, 60–90 minutes in length, were conducted either in-person (65%) or over the telephone (35%). Table 1 provides examples of the types of questions asked in the interviews. The interviews were taped and transcribed verbatim by a transcription agency. Eligible participants consisted of family members or close friends (family-like) who identified themselves as being involved in the care of an elderly person who is or was (within the last 12 months) in receipt of home support services and those with a recently deceased relative ⁄ friend who had received services (within the last 12 months). To be included in our study, the clients had to be receiving assistance with personal care in British Columbia (in Canada, this is a government-regulated criterion for receiving publicly funded home support in most provinces). The friends and ‘others’ who participated in our study were family-like in that they shared a spousal-like bond or had a close relationship spanning

Table 1 Sample interview questions Sample interview questions Would you consider yourself to be the person who has the most responsibility for your friend ⁄ relative’s care? If yes, how long have you been providing this care? Has your employment been influenced by your care responsibilities? How many hours of a week does your relative receive home support services? In your opinion, is this adequate for your relative’s needs? Can you please describe a typical visit from the home support worker(s), beginning with what they do? Are there things that you would like the home support worker(s) to do that they do not do? Do you ever discuss your relative’s care with the home support workers? Do you ever plan what needs to be done and who will do it? Overall, how satisfied are you with the home care services your relative is receiving? Why is that? Has home support made it easier or more difficult to care for your relative? In your opinion, could the services your relative is receiving be improved in some way? If yes, how?

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many years (life partners). We note that there are often problems with retrospective accounts in research; we did however choose to include caregivers with a deceased relative ⁄ friend as there was notable similarity in their responses (in their pattern and nature of observations) with those of current caregivers. Of the 56 family caregivers interviewed, 52 met the study criteria. Three respondents were excluded from the analysis presented in this paper based on the length of time that had elapsed between the time their relatives last received home support services and the time of their interviews (over 2 years). Sample The majority (83%) were female: either wives (33%) or daughters (35%) of the care recipient (Table 2). Ninety per cent identified themselves as the person most responsible for the care of their relative or friend. Most caregivers were either not presently employed (39%) or retired (33%); of the 15 respondents who were employed, 12 were adult children. Caregivers reported that their health status was poor (10%), good or fairly good (77%),

Table 2 Family caregiver characteristics (N = 52) Characteristics Gender Male Female Marital status Married Widowed Divorced Single Employment status Yes No Retired Health status of caregiver Poor Fairly good Good Very good Excellent Age of caregiver (CG) Relationship of CG to CR Wife Husband Daughter Son Daughter-in-law Niece Friend Other

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N

%

9 43

17 83

37 10 3 2

71 19 6 4

20 15 17

39 29 33

5 11 29 4 3 Mean: 68 years

10 21 55 8 6 Range: 46–91 years SD: 11

17 7 18 2 2 1 4 1

33 14 35 4 4 2 8 2

Table 3 Care recipient characteristics (N = 52) Characteristics

N

Living arrangements Alone in own home ⁄ apartment With respondent (CG) With another relative In assisted living Deceased Other Age of care recipient (CR)

%

8 24 2 2 8 8 Mean: 85 years

15 46 4 4 15 15 Range: 68–97 years SD: 8 years Length of time CR receiving home support services Less than 1 year 19 37 One to 2 years 9 17 Three to 5 years 15 29 Five to 10 years 6 12 Over 10 years 3 6

or very good or excellent (13%). Nearly half of the family members interviewed lived with their relative who received home support services (46%). The mean age of the care recipients was 85 years (SD: 8 years); nearly 60% were female. Two respondents cared for their mother and father who were both receiving home support at the time of the interviews. Clients had been receiving home support from 1 month to 23 years (Table 3). Analysis The conceptual model developed by Sims-Gould & Martin-Matthews (2007b) guided the analysis by serving as an overarching framework for organising the themes in the data. Using direct care and assistive care as broad categories, three members of the research team independently read and re-read the completed interviews in sets of five. Each analyst identified broad themes located within the two overarching categories. Over a 2-month period, five team analysis meetings took place. At the research meetings each team member presented ‘themes’ and provided examples from the transcripts. Strategies for establishing rigour in this study included engaging in peer debriefing amongst the research team, memo writing and recording decisions made throughout data collection and analysis (e.g., an audit trail).

Results The findings of our study are framed within two categories: direct care and assistive care (Sims-Gould & MartinMatthews 2007b). Through their verbatim responses, family caregivers provided insight into these two distinct yet interrelated types of care. In discussing direct care, ª 2010 Blackwell Publishing Ltd


family caregivers were able to provide observational appraisals of the assistance provided by home support workers to their elderly relative. Family caregivers discussed their observations of the instrumental aspects of care and the completion of tasks outlined in the service or care plan (the organisational or agency tool that directs ⁄ prescribes what services to provide). They also spoke about the ‘affective’ or relationship aspect of the receipt of home support by their elderly family members. In discussing assistive care, family caregivers provided detailed accounts of the interactive aspect of home support. They also discussed their role in teaching home support workers, ‘managing’ the care and providing quality assurance and monitoring. Direct care Family members discussed two distinct aspects of direct care – the instrumental aspects (the performance of the tasks that workers are assigned to do) and the affective aspects (the relationship between workers and their elderly clients). Dissatisfaction with instrumental assistance Family caregivers were critical of the instrumental tasks performed by home support workers. They expressed a sense of impotence in being unable to influence the type of care their relative was receiving. Over three quarters of family members pointed to the bureaucratic nature of the service and their frustration with the restrictive nature of the Care Plan – the document that guides what home support workers are authorised to do within a specified time allotment. One woman caring for her husband commented on the nature of the assistance home support workers are permitted to provide: Not taking medication, no. Housekeeping, no. Dusting, no. Vacuuming…there’s nothing written on the paper that they can vacuum.

Similarly, a daughter caring for her mother commented on the restrictive nature of the tasks that home support workers are able to perform. She felt that workers needed to be able to do things even if the task was technically outside the ‘allowable’ or authorised job list or Care Plan. She used the example of kitty litter at a toxic level to illustrate how the worker’s inability to work outside the care plan could result in a health issue for the elderly client. There were many examples like this ranging from cleaning toilets and tubs, to changing light bulbs. The kitty litter box gotten to a, toxic level, it needs to be cleaned. I guess I kind of have the feeling that it’s not


really on their radar. Maybe particular individuals might. But as a job or task description, it’s not there.

Although family members are critical of the restrictive nature of tasks outlined in the care plan they do recognise the predicament of the workers. There is an acknowledgement that many workers are just doing the best they can, endeavouring to complete the assigned tasks in the allotted time while balancing the needs and desires of their clients. This was underscored by family members who did not live with their relative and who were reluctant to be overly critical of the work for fear of reprisal against their loved one in their absence. One daughter commented: They certainly use a lot of time management… do a couple of things at the same time.

However, while family caregivers recognised the predicament of workers being bound by agency rules and guidelines, they indicated that if workers had some discretion in the tasks it could offset some of the family caregiver’s duties. For example, if a client did not need a bath but needed the kitty litter to be changed this would be very helpful to the family caregiver if they could substitute one task for another. This would ‘free up’ family caregivers to provide other types of care including selfcare such as sleep and respite. This was particularly true for those co-resident caregivers who provided 24 ⁄ 7 care and relied heavily on home support to supplement their caregiving. Importance of affective assistance Throughout the transcripts, all but a few of the family members interviewed emphasised the importance of the relationship between their older relative and home support workers. This is consistent with previous research on formal care, where families place value on ‘individualized affective care, accompanied by good instrumental care’ (Ward-Griffin 2002, p. 207). Family members discussed the importance of the relationship with their relatives in terms of providing companionship, expanding their social network, and breaking up the monotony of being predominantly housebound. A daughter and son-in-law described the importance of companionship stating: I would say that one of the biggest ones for my mom is the companionship. Conversation, having a tea or coffee…they sit down. They have a cup of tea…she does what she needs to do but she’s also very good company for my mother.

Families spoke about the importance of the relationship between home support workers and their elderly relatives in terms of a break from the routine and also in

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terms of expanding their ‘world’. This was especially true for home-bound elderly clients. One daughter expressed this by stating: That’s something as her caregivers we’re constantly fighting against… being on the watch out and trying to avoid her making her world smaller and smaller, we’re trying to push it out… this is a very important part of that service that they deliver – they make her world bigger.

In addition to discussing the importance of the relationship between workers and their elderly relatives, family members also commented on the quality of this interaction and relationship. Families consistently commented on the importance of workers ‘knowing’, ‘understanding’ and ‘seeing’ their relative as a person. It was important first for there to be a relationship between the worker and the elderly client, but better still if it was one where the worker took extra steps to ‘really know’ the person as an individual. This was important for all caregivers, both those who lived with the care recipient and those who did not. One daughter-in-law commented: I appreciate most the ones that take a little extra time to see her as a person. And sit, even for 5 minutes, and just – just listen to her. That is such a big thing. And she’s really happy if that’s happened.

Assistive care Assistive care is the care provided between caregivers. In this study we see two types of assistive care. In the first instance, assistive care is reciprocal between family caregiver and home support worker, and is interconnected and bidirectional – caring together. This is the ideal scenario, where the assistive care benefits both family caregiver and home support worker. The second type of assistive care is unidirectional and typically involves a family caregiver assisting a worker without a reciprocal aspect. This type of assistive care is provided by one party, usually a family caregiver, and is necessary to ensure appropriate quality care of their elderly relative. There are several types of unidirectional assistive care, including care management, quality assurance, and monitoring. Caring together Family caregivers describe various ways in which they care ‘with’ the home support workers. Either by working together to accomplish a task or by setting the stage for one another’s care, the caring work is inextricably linked. This type of care was typical for family caregivers living with the older person in receipt of care. Family caregiver and home support workers often work together when the physical needs of the care recipient extend beyond what a worker can reasonably provide on their own or 420

when it is more effective or efficient to work together. For example, one wife caring for her physically dependent husband described how she and the home support worker worked together to meet her husband’s needs: …there should always be two people to push him and I’m always there, you know. I stay behind and the helper stays in front. And that’s how we take him into the toilet.

Similarly, family members highlight how they work in tandem with their relative’s home support workers, often by setting up for them. Common examples of this include: setting out medication for a home support worker to then administer, drawing a bath so it is waiting for the worker to then bathe the client, making a heat-and-serve meal and placing it in the fridge so the worker can then serve it, or writing out instructions or information to assist a worker in completing tasks with efficiency. Care management Unlike ‘caring together’, care management represents a different type of assistive care that is more unidirectional in nature. Care management is a compensatory or assistive strategy, where family caregivers manage care – they provide assistance to the workers, so in turn, the worker can provide appropriate direct care to the elderly relative. Their role as care managers centres on a need to repeatedly teach new workers about the specific needs and preferences of their older relative as well as orienting them to the physical environment of the home. This is consistent with previous studies on homecare that show that a key concern of family members is worker turnover ⁄ inconsistency (Soodeen et al. 2007, Martin-Matthews & Sims-Gould 2008, Sharman et al. 2008). The following passage illustrates the issue of worker turnover, and the family member’s role in assistive care through their role in care management. I don’t know. Because I’m hoping they will not change – it’s, it’s really hard for me to teach each one because so many times they come and I have to spend so much of time I hardly have much time during the day to train them and be with them, tell them ‘this’, tell them ‘that’.

Teaching new workers about needs and preferences was particularly onerous for family members with a relative with dementia. Family members felt they needed to teach workers the care routines and provide information about dementia. These family members spoke at length about the care management required to ensure appropriate care. One husband commented: Well… they didn’t understand Alzheimer’s … consistency is very important to them. And if strange girls come in my wife … just wouldn’t cooperate with them…they were strangers invading her area. But the regular ones she knew ª 2010 Blackwell Publishing Ltd


and they had very enjoyable visits...I sure taught them how to look after an Alzheimer’s patient.

Care management also involved family members making phone calls to the agency (i.e. to report changes in their relatives’ condition and ⁄ or to coordinate services between multiple workers). Quality assurance and monitoring As with care management, quality assurance and monitoring are compensatory or assistive strategies, where family caregivers oversee or monitor care. Family caregivers oversee and monitor care that the workers provide, so that as with care management, the workers can in turn provide appropriate direct care to the elderly relative. Family members stress that it is important for their relative to have personalised care in order for them to feel happy, satisfied and valued. Over half of the family members interviewed expressed concern about workers who just ‘ran in and did the job’ without attention to the individuality of their relative. In this way, families spoke about their role in quality assurance, that is, making sure their relatives were ‘seen’ and treated as individuals and that their individual needs and preferences were honoured. This was particularly true for those family members who lived with the care recipient and were more often present during service delivery. In addition to playing a role in quality assurance of service delivery, family members also discussed their role in monitoring the tasks performed by workers. Where quality assurance was more about assuring that their relative’s needs were met and preferences were honoured, monitoring was about making sure that tasks were in fact completed, and that they were completed in a safe and respectful way. This ranged from making sure workers did not put wet items on antique wood table, removed muddy shoes, and properly disposed of incontinence products. In many cases, family members found that if they did not do this monitoring, it could create more work for them in their caregiving and ⁄ or compromise the health of their older relative. Monitoring was really about protecting the physical environment of the home and protecting the health of their relative and less about preferences or socio-emotional needs.

Discussion and conclusions The delivery of home support is experienced by family members as a dynamic negotiated process that includes contributions from home support workers and family members themselves. Our results show that the two systems of care (the formal paid system and the informal unpaid system) do not run parallel to one another but are inextricably interconnected. While workers, directed ª 2010 Blackwell Publishing Ltd

by a plan of care, provide care to their older clients, they also provide assistance to and receive assistance from their clients’ family members. The boundaries between what families provide and what home support workers provide are often not as clear cut as agency policies might dictate. This is likely due to a number of factors which include, but are not limited to, the nature of home support itself. Services are delivered in the private space of client’s homes and as such, workers have a unique work environment (Martin-Matthews 2007). In order to perform the assigned duties, workers need to sensitise themselves to both the physical work environment (their client’s home) and the social environment. The social environment, as shown in this study, often frames how certain tasks get performed. For example, there can be a sharing of care where a worker receives assistance from a family member in order to meet the physical demands of a particular situation or where it is more time efficient for a family member to ‘set up’ for a worker’s arrival. There may also be monitoring of care, if a family member senses that care is not being delivered in a respectful way or in a manner that best supports the health needs of their older relative. The delivery of home support is framed by the presence and contributions of family members and home support workers together. The conceptual model of care developed by SimsGould & Martin-Matthews (2007b) (see Figure 1) provides a useful framework for examining the different types of contributions within home support. The distinction between direct and assistive care underscores the range of supplementary and complementary contributions that occur throughout the delivery of home support. Family members discuss direct care in terms of the importance of the affective relationship between home support workers and their older relative, and emphasise how the companionship aspect of home support is essential to the well-being of their relative. They also discuss the limitations of the instrumental care provided by workers and point to restrictive agency policies and guidelines as being the bottleneck in service provision. Family members are quick to criticise what workers do not do, but also acknowledge that workers are limited by what they are allowed to do. Families also recognise that rotation of workers, scheduling and other organisational components of home support service delivery can serve as barriers to the development of relationships between home support workers and their older relatives. In discussing assistive care, family members note the sharing of care and their roles in the management, quality assurance and monitoring of care. Assistive care is both positive and negative. It is framed as work that is willingly done together to offset the strain of caring. It is

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also described as being imposed sharing in certain instances (e.g. when a worker places soiled laundry in the wrong hamper). Family members emphasise the positive aspects of sharing the care – the bidirectional assistance between worker and family members. They indicate that a good relationship between the worker and client is essential to this sharing. When the relationship between worker and client is perceived by family members to be ‘good’, they speak about caring towards a common goal, working together in an attempt to make the job easier for each other. They however do not like the idea of sharing if they feel that they are working to offset deficiencies within the system. It is apparent in our data that this perspective on sharing of care does not get communicated to agencies via traditional care assessment tools, and yet provides insight and detail into how the work of homecare often is done. Family members also spoke at length about their role as care managers, in particular with respect to their role in teaching home support workers. This corroborates previous research on family caregiving that has shown that caregivers define one of their key roles as managerial care (Rosenthal et al. 2007). The teaching they discuss is related to both the physical orienting of new workers to the older relative’s home and to what needs to be done and how to best do it. This was particularly onerous for family members caring for a relative with a chronic progressive illness such as Parkinson’s or a cognitive impairment. The demands for these family caregivers are so great that any extra work, like teaching, feels like too much. Having to deal with a rotation of workers exacerbates the load, and requires multiple orientations for multiple workers, from family caregivers who are already strapped for time and energy. Quality assurance and monitoring were also identified as key themes. Family members discussed at great length their role in overseeing that their family member received service in a manner that reflected their needs and preferences. They also described the need to ensure that home support workers treated the elderly person with respect and dignity. Home support workers who demonstrated skill in personalising their practice and tailoring it to individual clients, were praised by family members who placed considerable importance on not just the performance of a task but rather the completeness, sensitivity and appropriateness in which it is performed. One of the strengths of the conceptual model used to frame the analysis is that it shows the bidirectional nature of the relationships between the workers, family members and clients. While the clients have not been discussed in the context of this paper it must be noted that they too contribute both directly and assistively within the caregiving system. They are not passive actors in this 422

experience but rather they have agency. Just as family members ‘set up’ for the home support worker’s arrival, so too do the elderly clients. Older clients and their families are not just consumers of service but rather contributors to this dynamic care system. The findings from our study have both practice and policy implications. From a practice perspective, by adopting a focus that is inclusive of the interactions of multiple individuals (family members, clients, paid workers), assessment and treatment plans would be based on an understanding of both client needs and of appropriate ways to augment a family’s ability to provide and sustain care to an older relative. From a policy perspective, by better understanding the interactive nature of home support, we underscore the critical role of family caregivers in the formal system. Based on other analyses of data from workers interviewed in our study, we know that reduced hours, rotating schedules and lack of continuity are major concerns (Martin-Matthews & Sims-Gould 2008; SimsGould and Martin-Matthews 2010). The findings from this study clearly show that it is frequently family members who bear the burden of these issues and are ‘filling in the gaps’. The findings of this study demonstrate that policy designed to support family caregivers is intimately tied to home care policy. Comprehensive caregiver support policy must be inclusive of home care policy and vice versa. There is one main limitation to the present research. We did not ask about the characteristics of the home support workers providing care for the elderly clients in this study. Although in a separate project we did interview home support workers, we were not able to match the workers with the clients and their family members in this study for reasons of privacy legislation in Canada guiding the recruitment of study participants, ethics guidelines and also logistics (clients can have up to 30 different workers ⁄ month). It would have been helpful to know more about who the workers were and how their characteristics may have influenced our findings. However, based on some of our other research we do know much about the demographic characteristics of these types of workers (see Martin-Matthews & Sims-Gould 2008; Sims-Gould and Martin-Matthews 2010). Research that examines the responses from dyads or triads of workers, clients and ⁄ or family members would enhance our understanding of the interactive nature of home support. In conclusion, the delivery and receipt of home support depends on the active participation of families; without them, the delivery of home support is arguably more difficult. The two systems of care, whether dichotomised in terms of paid and unpaid, formal and informal, or workers and family members, rely on the ª 2010 Blackwell Publishing Ltd


participation and contributions of the other. The two systems both combine efforts and work in synchrony with one another in providing care that meets the most basic and intimate needs of frail older people.

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