Valuing the Older Person in the Context of Delivery and Receipt of Home Support

Abstract

Client perspectives of home support (i.e., assistance with daily activities that help to maintain a safe and supportive home) have not been considered in relation to personhood: “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being.” Personhood and positive person work interactions conceptually guided our secondary analysis of data from a generic qualitative study including 82 semi-structured interviews with older adult home support clients in British Columbia, Canada. Findings revealed clients value a “focus on the person,” “preservation of autonomy,” and interactions characterized by recognition, validation, collaboration, and negotiation. Individuals involved in the delivery of home support services are in a key position to support the personhood of older adult clients.

Keywords

personhood home support quality of care client perspectives positive person work

Introduction

Home care is a rapidly expanding sector of Canada’s health care system (Canadian Institute for Health Information, 2007; Coyte & McKeever, 2001). It is estimated that one million people in Canada use home care services annually (Shapiro, 2002). Canada is unique in the ways in which it delivers home care. While Canada has a universal health care system, each province has its own home care program, with no national standards in place (Shapiro, 2002). Under provincial jurisdictions, the nature of service provision in Canada is determined more by where one lives than by need (Martin-Matthews & Phillips, 2003). Clients can access services through several different mechanisms. First, older adults can receive home support that is either partially or fully subsidized by the government. Second, those who served in the military can receive services through Veterans Affairs, which provides a comprehensive set of services that are means tested, including grounds keeping and some transportation (Canadian Home Care Association, 2008; Pedlar, Lockhart, & Macintos, 2009). Finally, clients can pay out-of-pocket purchasing service through agencies. Although service is delivered and received in a variety of ways, regardless of the mechanism, it is always between a paid care provider and a client.

This article focuses on “home support,” a type of home care provided by unregulated workers who are referred to, in various parts of Canada, as home support workers, community health workers, personal support workers, home health aides, or homemakers. Home support services, offered through the various mechanisms noted above, provide assistance with daily activities such as personal care, meal preparation, and light household tasks that help to maintain a safe and supportive home (Canadian Institute for Health Information, 2007). The task-based nature of home support (e.g., help with bathing, dressing, etc.) is typically underscored in service descriptions put forth by government and provider agencies. However, researchers in the area of home support have also highlighted the relational aspects of the care provided by home support workers (Degiuli, 2007; Denton, Zeytinoglu, Davies, & Lian, 2002; Sims-Gould & Martin-Matthews, 2010b).

Home support is perceived by older adults as key to facilitating their strong desire to remain in their own homes for as long as possible (Aronson, 2002; Piercy & Dunkley, 2004; Soodeen, Gregory, & Bond, 2007). Cohen and colleagues contend that despite the increased attention to the provision of community services within home environments, changes such as a focus on fewer, more acute clients, and the shift away from prevention has resulted in “serious concerns about the adequacy of these services” (Cohen, Hall, Murphy, & Priest, 2009, p. 8).

The present study is a secondary analysis of transcripts from semi-structured interviews with older adult clients receiving home support services in British Columbia, Canada. The aim of the original study was to examine client, family member, and home support worker perspectives about the delivery of home support (Martin-Matthews & Sims-Gould, 2008; Sims-Gould & Martin-Matthews, 2010a, 2010b). Clients were asked questions about types of services they receive, their satisfaction with these services, and impressions of their workers. We found that in sharing their perspectives, clients also revealed an aspect of care that has not yet been explored in the home support literature, namely, experiences related to personhood. Kitwood, a pioneer in the application of personhood to the provision of care for older persons with dementia, defines personhood as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust” (Kitwood, 1997, p. 8).

This article focuses on personhood for home support clients and the types of interactions that both support and detract from personhood during the delivery of home support services. Using Kitwood’s notion of “positive person work” to conceptually guide our analysis (Kitwood, 1997), we examine the types of care interactions that support or compromise personhood from the perspective of older adult home support clients. This article begins with a brief overview of the importance of considering clients’ perspectives of home support, followed by a description of the principles of personhood and “positive person work” used to guide the secondary analysis.

Health care dialogue is characterized by approaches to care (e.g., person-centered, relationship-centered) that acknowledge the importance of personhood (McCormack, 2003; Nolan, Brown, Davies, Nolan, & Keady, 2006). At the same time, accountability to clients, evidenced by a focus on determining client perspectives of health care (e.g., satisfaction surveys), is currently one of the prevailing principles in Canadian health care policy (Health Canada, 1997). Both of these trends focus on emphasizing the client’s “voice” in health care (Aronson, 2003; McCormack, 2003). Aronson (2003) argues that bottom-up approaches (e.g., ascertaining clients’ perspectives) are critical if we are to improve the ways in which home and community services are delivered. Although there is a small but growing body of literature exploring clients’ perspectives of home support (Aronson, 2003, 2006; Aronson & Sinding, 2000; Edebalk, Samuelsson, & Ingvad, 1995; Francis & Netten, 2004; Geron, Smith, Tennstedt, Jette, Chassler, & Kasten, 2000), none of these studies have discussed the implications of the quality of in-home services as they relate to supporting personhood. Although personhood is not specifically discussed in studies of clients’ perspectives of home support, findings often highlight the core concepts of personhood such as relationships, choice, dignity, and the importance of being “known” (Aronson, 2004; Gantert, McWilliam, Ward-Griffin, & Allen, 2008; Piercy & Woolley, 2000).

Personhood and Positive Person Work

There are several complex philosophical arguments underlying the notion of personhood (see McCormack, 2004). The key principles of personhood include a focus on the following: treating persons, not diseases or disabilities; understanding that individuals have unique histories and preferences; eliminating dehumanization; maintaining dignity and autonomy; and recognizing the centrality of relationships (Brooker, 2008).

Kitwood proposed the importance of “positive person work,” accomplished through positive interactions, as key to the provision of quality care for persons with dementia. Each interaction is conceptualized as a form of “care” and ultimately supports personhood by facilitating “deep and mutually emphathetic interaction between people” (van Weert, Janssen, van Dulman, Spreeuwenberg, Bensing, & Ribbe, 2006, p. 658). Kitwood (1997) outlined 10 different types of positive person work through which personhood can be sustained, but for the purpose of this article (i.e., to discuss positive person work evident in our client data) we will focus on four: recognition, validation, collaboration, and negotiation. Recognition involves being acknowledged as a person, having uniqueness affirmed, and being known by name; validation means acknowledging and responding to an individual’s emotions and feelings and demonstrating empathy; collaboration allows for care where clients’ initiative and abilities are involved and, through working together, a person is enabled to accomplish tasks they cannot do on their own; negotiation means assumptions are avoided and persons are asked about preferences, desires, and needs (Epp, 2003; Kitwood, 1997; van Weert et al., 2006).

The concepts of personhood and positive person work are widely discussed in literature on dementia and long-term facility care (Buron, 2008; Kitwood, 1997; O’Connor et al., 2007; Perry & O’Connor, 2002). Researchers have applied the strategies of positive person work in nursing homes (e.g., Ryan, Byrne, Spykerman, & Orange, 2005) and inpatient hospital settings (e.g., van Weert et al., 2006) to explore and evaluate the care received by older adults with dementia. However, rarely is the personhood of older adults receiving home support services discussed and this is especially so for older adults who do not experience dementia. Still, the fundamental principles of personhood—that all individuals have dignity, autonomy, worth, and a set of unique moral principles, views, histories, and desires, (McCormack, 2004)—transcend functional abilities or cognitive status. At the core of care philosophies that emphasize respect for personhood is a focus on the “person,” not the medical condition or disease. Personhood is an important consideration for home support clients for several reasons. Much like in dementia care, where a shift toward support for personhood occurred in response to care that focused solely on the “disease” of dementia, care for older adults in the community that focuses solely on disabilities and impairments has the potential to undermine clients’ personhood. Furthermore, although home support clients’ capacity to express their preferences and desires may not be compromised, they often need assistance to physically “carry out” these preferences and desires.

The intent of this article is to enhance understanding about the relevance of personhood and positive person work in home support for older adults without dementia, through an exploration of how personhood is supported or undermined during the delivery of home support services.

Method

The present article is based on data from a larger mixed methods study (Martin-Matthews & Sims-Gould, 2008; Sims-Gould & Martin-Matthews, 2010a, 2010b) aimed at understanding key issues in the delivery and receipt of home support services from the perspective of home support workers, elderly clients, and family members. This article focuses on clients’ perspectives of home support and draws on the qualitative data generated for this study. The qualitative portion of the study employed a generic qualitative research approach. Generic qualitative research focuses on understanding an experience or an event from the perspective of the people involved (Caelli, Ray, & Mill, 2003; Merriam, 1998). This approach best met the overall study objective to better understand the perspectives of individuals involved in receiving and providing home support services.

Recruitment

Individuals above the age of 65 years, willing to participate in an interview, and able to provide informed consent, were eligible to participate in our study. On receipt of approval from the University of British Columbia Behavioural Research Ethics Board, data were collected from December 2006 to September 2008 in British Columbia, Canada. Participants were English speaking clients, living at home or in assisted living facilities, who were currently in receipt of home support services or had been in receipt of home support services within the 18 months prior to the interview. Clients were recruited through newspaper ads; posters in local community centers, senior’s centers, assisted living facilities, and grocery stores; presentations to senior’s groups; mail-outs to provincial caregiver associations; and through five home care agencies.

Data Collection

Interested clients contacted the project manager to find out more information and to schedule an interview. Ample time was booked for interviews to ensure that clients and/or interviewers did not feel rushed. Semi-structured interview guides were used to ask clients’ about their experiences with home support. Table 1 provides examples of questions that elicited responses related to personhood and positive person work. Interviewers were trained to use techniques such as probing (e.g., for clarification), pausing, and reflective questioning to ensure that respondents understood the questions. The majority of interviews were conducted by a research associate with a master’s degree in gerontology and extensive experience working with older adults.

Table 1.

Sample Interview Questions

Overall, what do you like most about having home support services?

Overall, how satisfied are you with the home support services you receive? What makes you say that?

Do you feel close to any of your home support workers?

Thinking about a home support worker who you really like, can you describe what it is about this person that makes him/her so good at his/her job?

Eighty-two interviews were conducted in total (68 in person and 14 by telephone) and lasted approximately 45 min on average. All but three interviews were audiorecorded and transcribed verbatim. The majority of participants were interviewed with no one else present. During 17 of the 82 interviews, a caregiver (12 spouses, 4 adult daughters, and 1 friend) was also present and contributed to the discussion. In one case, a client’s daughter translated questions from English to Mandarin. In three cases, caregivers acted as proxies to help compensate for clients’ language or hearing impairments, and in the remainder of cases, caregivers elaborated on care recipients’ responses. In all cases, the interviewers specified that the goal was to gain the client’s perspectives on home support and as such all interview questions were directed to the client, not the caregiver. Interview transcripts were organized and analyzed using the qualitative analysis software program NVivo 8.

Participants

Participant demographics are provided in Table 2. Clients accessed home support services through both the public and private sectors. Nearly half the respondents (48%) received services that were fully funded; 13% received services that were partially funded through the provincial health care system; 18% paid privately for services; and 12% received services funded by the Veterans Independence Program (VIP) through Veterans Affairs Canada. The duration, frequency, and types of services clients received varied from less than 1 hr a week of assistance with bathing to more than 20 hr a week of assistance with personal and household tasks. For many clients, the experience of receiving home support services had spanned many years, ranging from less than 1 year to more than 10 years (see Table 2). In eight cases, the services had originally been allocated to the client’s spouse and had continued for the client following his or her spouse’s death, and in seven other cases the receipt of home support had been intermittent following episodes of acute illness over the course of several years. Seven clients were not receiving home support services at the time of the interview, but all had received services within the last year and most within the last 2 months. Services received consisted mostly of assistance with bathing (83%) and having their hair washed (44%), dressing (54%), meal preparation (38%), and light household tasks such as cleaning floors (37%) and laundry (35%). Many participants also discussed changes to the number of hours and types of services received. Reasons for these changes included recovery from acute illnesses that resulted in services being reduced, deteriorated health status that resulted in additional time and services, and reduced services as a result of cutbacks introduced by the provincial government. The most common chronic conditions reported by participants were arthritis, cardiovascular disease, respiratory conditions, and diabetes. Many clients also identified having problems with mobility that required use of a variety of mobility aids (e.g., walkers, wheelchairs, and canes).

Table 2.

Client Characteristics

Participants	N
Mean age (range)	83 (65-96)
Gender
Female	55 (67%)
Male	27 (33%)
Birthplace
Canada	65 (79%)
Europe	13 (16%)
Other	4 (5%)
Marital status
Married	24 (29%)
Widowed	43 (52%)
Separated/divorced/single	15 (18%)
Living arrangements
Alone	49 (60%)
With spouse	24 (29%)
With adult children	9 (11%)
Length of time receiving services
Less than 1 year	20 (24%)
1 to 5 years	37 (45%)
5 to 10 years	13 (16%)
Above 10 years	12 (15%)
Number of hours of services/week
Less than 1 hr	13 (16%)
1 to 2 hr	15 (18%)
3 to 5 hr	17 (21%)
5 to 10 hr	16 (20%)
10 to 20 hr	15 (18%)
Above 20 hr	6 (7%)

Data Analysis

Guided by Richards & Morse (2007) and Richards (2005), topic and analytical coding, analysis meetings, and memo writing facilitated the development of themes and patterns that best illustrated the experiences of the participants. Our analysis team consisted of postdoctoral fellows, masters and undergraduate students, and the principal investigator of the study. Qualitative analysis training was provided by the postdoctoral fellows. KF conducted the majority of the coding, working in concert with KB, JSG, and AMM through the sharing of analytical memos and analysis meetings where we discussed and developed themes and relationships amongst themes.

The following topic and analytical codes were initially identified: “nonnegotiable versus negotiable care,” “responsive care,” and “depersonalized versus personalized care.” Through memo writing and analysis meetings, our team worked through the overlap in these categories and discussed “what” type of care was being discussed and “who” was involved in clients’ accounts. Although we did not directly ask clients questions related to personhood, these initial analyses of the data revealed statements that reflected elements of personhood and positive person work. For instance, clients discussed aspects of home support services such as being treated as an individual, having choices, attention to values and preferences, and involvement in decision making. Thus transcripts were more closely analyzed with a focus on identifying aspects of home support where personhood was either supported or compromised using the positive person work interactions, identified by Kitwood, as a conceptual guide (Kitwood, 1997).

Literature searches on home support, personhood, and autonomy were conducted to compare our findings to the work of others in these areas. Rigor was established through peer debriefing (via team meetings and smaller focused discussion about the developing categories), memo writing, a decision log kept during data collection, and an audit trail outlining decisions about the process of analysis (Barry, Britten, Barber, Bradley, & Stevenson, 1999; Eakin & Mykhalovskiy, 2003; Guest & MacQueen, 2008).

Findings

Our findings revealed a range of care experiences, from highly individualized care that was flexible and responsive to clients’ individual needs, to care that was depersonalized, rigid, and unresponsive to clients’ needs, preferences or values. Two main themes emerged from the data that can be understood as elements of personhood: focus on the “person” and the preservation of autonomy. Both themes were characterized by care interactions that were either reflective or not reflective of positive person work (Kitwood, 1997). First, focus on the “person” was characterized by the positive person work interactions of recognition and validation. Second, the preservation of autonomy was characterized by interactions that reflected collaboration and negotiation. Clients discussed types of interactions that resulted in the support of personhood and where the absence of positive person work strategies detracted from these elements of personhood.

Focus on the “Person”

Focus on the “person” meant that participants were valued and respected as “persons” and not simply as “tasks” to be completed. Jana explained that she liked her workers because “[t]hey’re caring. It’s not just a job to them and you’re a person.” The theme of focus on the “person” was characterized by the positive person work interactions of recognition and validation. Participants in our study discussed the importance of being known and treated as unique individuals (recognition) and having workers who expressed empathy and understanding (validation). Clients appreciated workers who took the time to talk to them, to find out about how they were feeling, and to become familiar with their particular likes, dislikes, health conditions, and personal circumstances. Grant discussed the importance of having workers who showed an interest in him beyond the tasks to which they were assigned:

Some of them treat you as if . . . you’re their son or their husband. And they [go] beyond just a routine of come in and do their little chore and leave. They ask you how you’re feeling and so on and so forth. And . . . well, butter you up a little bit . . . they’re more interested in you than just doing the job and leaving.

The manner in which Marvin and his worker interacted was meaningful because it helped to maintain continuity with the past:

. . . she’s [HSW] got to know me and . . . we get along good. That’s the best scenario I can ever ask for. That somebody knows me, knows how . . . I joke around and kibitz and . . . makes the day go. Gloria and I . . . I can kibitz with her and . . . she comes right back at me. And that’s what I like ’cause my mom, dad, my brothers, we all did that.

Clients told us about the empathy and understanding their workers demonstrated during bathing and personal care; times when there was potential to feel a deep sense of loss of privacy and dignity. As well, clients talked about workers who expressed concern for clients’ changing health status and went “above and beyond” to comfort them, on a feeling level, during times of pain, sickness, or distress. Sheryl explained,

I mean, nobody wants to be sick, and nobody wants to have all these things done, but when you’re in a position where you’re helpless, to have someone that you can rely on is a wonderful thing. There’s a sense of security with it that goes with it also, right. That they know, and they understand. Where a lot of people don’t understand, you know? And they don’t talk about my illness all the time either, ’cause I don’t want to talk about it all the time, right? But they go along with whatever my conversation happens to be. They’ve come here when I’ve been in tears, right? And they’ll just give me a hug. And they’ll make me a cup of tea, right away. So I mean, I don’t know what else to say.

Negative care interactions—lack of “focus on the person.”

However, when the focus of care moved away from the person to the tasks of home support, clients felt a lack of identity, individuality, and uniqueness. They discussed care situations where they were not being listened to or where they felt their beliefs, values, or preferences were disrespected either by workers or by provider agencies. For instance, Trevor felt his workers didn’t take an interest in him as a person:

Well, I guess I expect more than what I get, you know. And . . . they’re just not the best. They’re not the . . . caring type, if you know what I mean. And . . . takes an interest in me a little more than what—they want to get the hell out of here as quick as they can. You know what I mean . . . Well, I like somebody to sit down and say hello to. I’m human, you know.

Samuel discussed his sense of being “pushed around” by people at the agency and the different workers coming to his home:

The lack of identity. And feeling that I’m almost in jail but not quite. You know, they [agency] need to be more compassionate. They need to be on a first-name basis if possible the same person so that I can build up a rapport and trust and feel confident talking to them.

For some clients, a high turnover of workers, a lack of training, and service cutbacks were barriers to the development of a care environment where recognition could be nurtured. For example, Molly is blind and thus this becomes part of “knowing” her as a person with unique needs. She needs her workers to know her routines and to understand the importance of putting objects in her home back in exactly the same place as she had them. To support clients in this manner, workers must have knowledge, understanding, and respect for each client’s circumstances and preferences. As Molly described, this can be compromised when new workers are sent into unfamiliar environments and care situations:

But the thing that really gets me, is they keep sending somebody new and that I do not like. Because I am blind and those people should have a little extra training . . . [they] must understand that everything must be put back exactly as I . . . as I have it. And they come in, they don’t know where anything is or what we do and I have to go step by step.

Molly felt that she was not recognized or validated because the reality of her blindness and associated needs were not considered when the agency sent a new person. Several clients discussed times when they felt their care providers did little to acknowledge their experiences, feelings, or preferences. Paul did not feel “heard” during his interactions with his case manager:

Well, I’m boiling after I’ve finished with her [case manager]. And she won’t listen. You’re listening to me. She won’t listen. She’s too busy doing her writing and I try to explain something . . . it’s not being heard. I know it’s not being heard.

Preservation of Autonomy

The theme of preservation of autonomy emerged frequently in our data, and was facilitated in care situations characterized by collaboration and negotiation.

Collaboration

Clients discussed workers who helped them “as much” or “as little” as needed and described how they “worked together” if clients were not feeling up to doing a task on their own. It was especially important to clients who were nearing the end of life and appreciated doing things for themselves on their “good days.” It was also important for clients who were recuperating from an acute illness or injury as they were looking forward to regaining their independence. Salma explained,

I can count on them. They’re very caring people. But not overly. I like—with my home support and the bath, they let me do what I can—can do without taking over. But they’re there to help if I need help . . . But I guess they respect my—and they respect my right to do what I—I can for myself instead of trying to do it for me.

Care that preserved autonomy was often discussed in terms of “I-they” interactions and reflected clients’ involvement in shaping care. Specifically, clients spoke of opportunities to choose the types of tasks with which workers assisted them and provide input into the “ways” in which these tasks were carried out. In this sense, clients discussed not only that they were given a “say” in their care but also that workers were responsive to their particular needs or preferences through a collaborative and negotiated process.

Negotiation

Aspects of care that were “negotiable” included assistance with housekeeping, meal preparation, personal care, scheduling, and companionship. John shared an example where he felt that the agency responded to his need for more time with a worker:

Well that was the way with us, she had two hours at one time, and she was running short. She was working hard and didn’t have time to finish the job, so when we asked if we could get one more hour, they didn’t hesitate at all, they said sure.

Clients described how particular workers consulted them about what they needed even if they “were not allowed” to do certain tasks. This was described as occurring in spite of the rules and regulations of the agency, government, and/or union.

. . . If she had extra time she’d do stuff, she’d do whatever it was she saw needing done, or she’d ask us if there was anything she could do for us . . . she didn’t give a damn about her agenda. If we needed it done, she did it, no questions asked.

Clients also emphasized workers’ willingness to negotiate “how” they preferred the tasks to be completed, that is, according to their preferences. Beatriz explained, “Then I’ll say . . . ‘Leave me awhile [in the bath] and you go and do the vacuuming and I’ll soak,’ ’cause I . . . like soaking.” Similarly, Flora stated,

They’re pretty good . . . ’Cause I’m very fussy at my bed. I like my bed made just so and without wrinkles. I don’t like wrinkles in it and . . . they listen to what I want.

In addition, many clients described an “anticipatory” aspect to home support services whereby they felt that “if” they needed more care or needed to make changes to their care they would be able to do so. This speaks to a care environment where clients felt secure that if they needed help they could get it. In these cases, clients were not necessarily expressing a current need for more care, but they reported that “if” they were to require additional help, either the workers or the agency would respond accordingly.

And, you know, that’s my . . . lifeline, you might say, you know. Like, I know that if anything should happen to [name] that . . . I know that I could phone [name]. That’s . . . the girl looks after [region] . . . And if I need to change or, like, appointments and stuff, “Could you please ask her to come later or earlier,” that’s never a problem. She . . . just does.

Lack of preservation of autonomy

Clients also felt that certain terms of their care were “nonnegotiable.” Aspects of care most frequently described as “nonnegotiable” involved housekeeping, outings, scheduling, time, and companionship. Nonnegotiable care was often characterized using language such as “not allowed” or “that’s the rules”; this type of care undermined clients’ personhood. As Alexis explained, despite having problems with her hips, legs, and wrists that required her to use a walker at all times, her workers were “not allowed” to help with any housekeeping while they were waiting for the laundry cycle to complete:

They are definite not. They are not allowed to even when they have time. Like . . . with the laundry, they have to . . . they sit here a half an hour doing nothing because they have to wait ’til the laundry’s dry . . . They sit here. I could . . . need somebody then for a half an hour to vacuum but they can’t do that. No housework at all.

Abby elaborated on a situation where the agency did not consider her preferences for meal times:

I have had . . . where they have taken and changed hours . . . and done it to—because that’s the time that that home support worker works and they’ll—they gave the home support worker precedent over the client. Like I have two days a week that I have home support at five o’clock and I don’t like that because I don’t—it’s too early to eat . . . at six o’clock they come in, by six thirty or quarter—by six thirty they’re—I’m eating and . . . by that time I’m . . . hungry . . . and there’s one day a week that I’m—on Monday where I have a home support worker at eleven instead of ten. And . . . I don’t like that either . . . Yeah, it’s too late for breakfast and too early for lunch so I can’t see why they even bother sending somebody.

Several clients explained how decisions about their care had been made entirely without their involvement or did not account for their needs, preferences, or desires. These cases demonstrate a level of “nonnegotiability” that stands in stark contrast to the many instances of care in our data where elements of personhood (e.g., autonomy) were supported through positive care interactions. Clients attributed the source of the “nonnegotiability” to interactions with particular home support workers or agencies. The lack of flexibility was frustrating for clients and some described “succumbing” to the rules. Helen described the feelings evoked from inflexible care:

And we’ve had several that were . . . when you would ask them to do something, “Well, we don’t do that.” . . . you feel, when you get someone like that, as if you have no rights at all. That you just do whatever they want to do and that’s what you end up doing.

Although several clients’ expressed feelings of defeat or acceptance, others described “countermoves” (Agich, 2003) that included canceling services altogether, hiring someone privately to improve consistency, and asking workers to leave their homes. In this way, “countermoves” were expressions of protecting personhood with respect to choice and involvement in decision making. Benjamin described his experiences with a new worker:

Anyway, I don’t know how they made out with it but there’s another lady came . . . she come here and she was going to pull the bed out from the wall and she was going to—went in the kitchen she was going to change everything and, “You haven’t got enough . . . things for your . . . dispenser things in the bathroom,” and all this and this and that. She was going to change everything. And I says, “Do you see the door? You take it” . . . Well, she had no business—it’s none of her business.

Meredith explained how she and her husband decided to cancel their home support altogether as the services offered no longer met their specific needs:

The only things I’ve ever asked were . . . vacuuming, which they no longer could do . . . they could not . . . clean the bathroom unless they gave me a bath. They could not . . . clean the kitchen unless they helped . . . prepare meals. And . . . so that meant they couldn’t wash the floor . . . they couldn’t do my massage and stuff unless they . . . had give me a bath. So . . . there was nothing left that we had—needed them to do . . . one of the . . . things that was really important for me was that I do as much as I could. I did not want to become an invalid . . . I did not want to become more and more helpless . . . I always tried to get to be able to do more and more again. Because I don’t want to end up a basket case . . . so . . . that was . . . very important for me . . . Just they couldn’t do the things I needed. That’s why we finally said, “We don’t want to do this anymore, ’cause it’s not—you can’t do any of the things that we want or need.” It was need not . . . want, really. . .They were the things that we needed to have done for us.

The majority of clients did not discuss experiences that were entirely supportive or unsupportive of their personhood. Rather, many of their experiences reflected a mixture of both positive and negative aspects over the course of their history receiving care. Some clients discussed workers who “stood out” as being more responsive, while others talked about positive experiences with workers but negative experiences with agency managers or case managers.

Discussion

This study highlights care circumstances where personhood was either supported or undermined in the delivery and receipt of home support services. Although we did not directly ask clients about their “personhood,” they emphasized care situations where they felt like a “person”; where their preferences and choices were recognized; and how honoring these preferences positively shaped the care that they received. Aronson (2004) described how clients valued “being known,” including that their identities, biographies, physical needs, capacities, and physical surroundings were known and respected. Participants in our study similarly discussed the importance of being known and treated as unique individuals. A lack of care provider continuity meant that workers did not always know clients’ care preferences or health conditions. Prior research has also identified a lack of continuity as a common dislike of home support from the client perspective (Gantert et al., 2008; Woodward, Abelson, Tedford, & Hutchison, 2004). Scheduling issues such as adhering to various regulations have been identified as agency challenges to providing consistent workers (Martin-Matthews & Sims-Gould, 2008).

Our findings suggest that the preservation of autonomy is a critical aspect of supporting clients’ personhood in home support. Piercy and Woolley (2000) discussed how home support workers “negotiate client autonomy” through helping clients feel in control while still completing essential tasks in the home. They concluded that one of the advantages to care in the home is the increase in power afforded to clients to determine particular aspects of their care (e.g., rules that will govern the relationship). Other researchers have also suggested that care which respects personhood is more achievable in home care settings, as opposed to long-term care settings, where clients are able to exert control over their personal environments (Coogle, Jablonski, Rachel, & Parham, 2008; Piercy & Woolley, 2000). One way clients in our study exerted control over their personal environments was through the use of “countermoves,” including canceling services and asking particular workers to leave their homes. While these types of client decisions highlight increased control over care within their own homes relative to long-term care, they also demonstrate how, ultimately, the very services put in place to meet clients’ needs were cancelled because they caused more angst and stress than they afforded support.

Autonomy in home support is not always possible. Standard home care practices often negate the possibilities of promoting care that is guided by the principles of personhood (Degenholtz, Kane, & Kivnick, 1997; Dewing, 2004; Kane, 1995). For example, Kane (1995) refers to “cookie-cutter” approaches to care, whereby a few standard, agency-focused care plans are allocated to a vast and greatly diverse population of clients without attention to each client’s individual values or preferences. Similarly, Meagher (2006) argued that organizational structures, including government policies and agency regulations, such as time and workload-related pressures and inadequate training, often act as barriers against care workers being able to provide the type of care they feel is best for their clients; such regulations make it equally difficult for clients to be able to negotiate the terms of their care. While the experiences of clients in our study were mixed, there were multiple instances characterized by a lack of support for autonomy (e.g., getting up earlier than they usually do or the timing of meals). Public policy related to the delivery of in-home care would benefit from a shift in thinking whereby resource allocations and care practices could be guided by support for clients’ personhood, with a focus on facilitating decision making and the provision of choice as the central tenets of home support. There are some examples of self-managed care programs in home care (e.g., Choice in Support for Independent Living [CSIL]) but they are often complicated for clients to manage, program information is difficult to access, and older adult home support clients are not the main users (Murtagh Consulting, 2008; Spalding, Watkins, & Williams, 2006).

Although client care is ultimately delivered through home support agencies and by home support workers, it is heavily influenced by what types of services are publicly “funded.” Thus, while many clients in our study attributed the nonnegotiability of services to particular workers and agencies, researchers and individuals within the home care sector (Hecimovich, 2008; Martin-Matthews & Sims-Gould, 2008) have emphasized that the “nonnegotiability” of services and lack of choice are influenced by a client’s eligibility for services in the home and the funding available to the home care sector to meet clients’ needs. For instance, in various parts of Canada, models of community-based care, including home support programs, have faced extensive restructuring such that cleaning, meal preparation, and assisting with shopping are no longer deemed to be medically necessary (Cohen et al., 2009; Denton, Zeytinoglu, Davies, & Hunter, 2006; Hollander, 2003). Thus, the types of tasks (e.g., housekeeping) reported to be important to the preservation of autonomy among clients in our study fall into the category of medically unnecessary/nonessential. Our data suggest that receiving assistance with the more “medicalized” aspects of home support alone is not enough to support clients in their own homes in a manner that supports personhood. Researchers have argued that limiting access to these types of “nonessential” services ultimately increases health expenditures (Hollander, 2001) and has limited the “preventative” function of home support (Cohen et al., 2009). We add to this argument that restricting home support to assistance with transfers, bathing, and dressing, without a consideration of what represents meaningful choices for clients, compromises personhood. This is particularly evident as it relates to the preservation of autonomy, a key principle on which home-based services are predicated (Canadian Healthcare Association, 2009).

Nonetheless, there were clients in our study who indicated that their needs were indeed met by the various services offered to them through home support agencies, some because it was within their “basket” of services (e.g., services through Veterans), and others because they were paying out-of-pocket for the additional services. In other instances, clients’ needs were met through the “good grace” of individual workers. Clients discussed workers who provided care that supported personhood but in some cases this was achieved by “not” following the care plan initiated by the agencies. Services were received in ways that were hidden from the agency, stemming from either a worker who took initiative and completed tasks because they recognized a need, or from clients asking their workers to help them with various tasks. These findings are consistent with previous research that demonstrates how home support workers work to fill the gap between what is “allowed” and what clients “need” (e.g., Aronson & Neysmith, 1996; Piercy & Woolly, 1999; Sims-Gould & Martin Matthews, 2010a). While working to fill discrepancies in service is a strategy used by workers, it is a potentially damaging solution for a number of reasons, such as worker reprisal, work place safety and compensation, and the creation of unreasonable or unmanageable client expectations.

The rationale for the provision of care in the home is often promoted using language and ideas inherent to personhood (Canadian Home Care Association, 2008). Studies from the United Kingdom suggest that government policy initiatives are using the language of personhood, but that the principles have yet to become incorporated into standard practice (Clarke, 2005; Rothera et al., 2007). Individuals involved in the delivery of home support services are in a key position to support the personhood of older adult home support clients. Clients discussed positive interactions with workers where they felt affirmed and recognized as a person with unique attributes and individual preferences. Thus home support workers are already employing positive person work strategies; these should be further encouraged and incorporated into the training received by workers. As demonstrated by van Weert et al. (2006), it is possible to train health care providers to take a more personhood-based approach to the care they provide. Episodes where personhood is undermined do not arise from malicious intent but rather negative care interactions “become interwoven into the care culture” (Brooker, 2008, p. 237; Kitwood, 1997).

Moreover, peer mentoring and preceptorship initiatives could ensure that new workers observe more experienced workers in ways that support personhood, thus promoting a training environment where positive person work is inherent to the care culture. Peer mentoring initiatives have been implemented in the training of home support workers and preliminary results are promising (Hayunga, 2007; Paraprofessional Healthcare Institute, 2006; Ryzin, 2007).

Even though aspects of personhood such as the importance of client values are discussed within home support research (e.g., Piercy & Woolley, 2000; Sharkey & Lefebre, 2008), previous studies about client perspectives of home support have not explicitly invoked the language of “personhood.” A focus on personhood and positive person work in home support provides a lens within which to consider how services can be delivered in a way that emphasizes a focus on the person and the preservation of autonomy. The developments in dementia care practice and research that resulted from a focus on personhood exemplify how the concept of personhood can provide a platform for advocating for a certain “type” of care. That is, care that emphasizes user involvement, is holistic, and works to eliminate care cultures that compromise personhood (Bartlett & O’Connor, 2010).

Limitations and Future Research

Participants in our study were receiving home support from a mix of service packages ranging from government owned and operated, contracted, and private agencies. It was not possible to establish clear patterns amongst these various “groups” in our data because some clients were receiving services from two different sources simultaneously (e.g., publicly funded for personal care and private for housekeeping). Therefore, there are instances where we are unable to determine if clients are speaking about services that are provided to them through publicly funded programs or services they pay for privately. Moreover, our sample varies greatly in terms of the type and severity of health conditions that could influence eligibility for certain services. We found “qualities” of home support that were either supportive or unsupportive of clients’ personhood, knowing that in future research about personhood and home support these distinctions (e.g., public vs. private) will be important to consider.

Our study is limited by the nature of our data in that we did not specifically ask about personhood and positive person work, and therefore, other positive person work interactions may be relevant and at play in home support. Future research could employ the use of observational techniques, similar to those used to study positive person work during the care of persons with dementia (e.g., van Weert et al., 2006). An observational research design could shed light on the nature of the interactions between workers and clients and provide a means of further exploring personhood and home support.

Footnotes

The author(s) declared no potential conflicts of interest with respect to the authorship and/or publication of this article.

Funding for the research on which this paper is based was provided to the project “Home Care in Canada: Working at the Nexus of the Public and Private Spheres” (A. Martin-Matthews, PI), by the Canadian Institutes of Health Research (Grant # IOP-70684).

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