Home support workers perceptions of family members of their older clients: a qualitative study

Most research about health care staff perceptions of families has been in the nursing literature or in residential care settings e.g., [6, 11, 12]. The provision of care in a residential care setting is very different than receiving care in the private space of one’s home. For example, each household is unique with respect to physical set-up, condition and sanitation. Compounding this, workers are expected to adjust daily to multiple homes (not just work within one environment as in residential care) encountering numerous clients, various family members and unpredictable interpersonal circumstances [13]. Unlike in residential care settings, HSWs do all of this in the absence of immediate, accessible supervision or staff support [14].

Moreover, existing research about relationship aspects of home support work typically focuses on interactions between clients and workers [10, 15‐19]. Workers’ perceptions of family members are typically embedded in discussions of clients or of workers’ perspectives generally e.g., [15, 20] . To date, there are three studies that broadly address HSWs’ perceptions of family members of older adult clients [21‐23]. Chichin [21] show that, for the most part, workers rated their experiences with families as positive (e.g., 80 % reported that families were very or somewhat helpful). The most common complaint was that families treated workers as maids; as well, workers’ job satisfaction declined when families expected the workers to go beyond what they perceived their job description to be in the home. Fischer and Eustis [22] describe three types of interactions between workers and families: caregiving alliances, conflict and separate worlds. Hokenstad and colleagues [23] explore HSWs’ perspectives about their interactions with family caregivers with a focus on understanding worker-family interactions when ending formal home care services. In such circumstances, workers display empathy for families and stress the importance of establishing clear boundaries. They also report that families are a critical source of information about clients. Even though attributes of relationships, such as companionship, trust and conflict, are identified as critical for partnerships between families and workers in health care settings e.g., [12, 24], this is an underdeveloped area of investigation in the home care literature.

In addition to describing the nature of the relationship between HSWs and family caregivers, we extend previous work and examine whether HSWs view family members as a help and/or a hindrance in the delivery of home based health care. Our work is guided by a socio-ecological approach [25] in that we pay particular attention to individual, organization and societal influences on HSW experiences of family members.

Ethics approval was granted from the University of British Columbia Behavioural Research Ethics Board (BREB) and the Fraser Health Authority Ethics Board, the regional health authority in which our study was conducted. Data were collected as part of a study that ran from March 2007 to October 2012 in the Lower Mainland of British Columbia, Canada. Eligible HSWs were those able to participate in an English language interview and providing care for clients aged 65 and over through a home care agency. We also employed a second method of recruitment, identifying participants from a list of workers represented by the BC Government Employees Union (BCGEU local 403). Every fourth worker on the list was contacted. In all, 118 HSWs were interviewed: 84 (71 %) were recruited through the agency method and 35 (29 %) were recruited through the union (for additional recruitment information see: [13]). All of the HSWs we interviewed were unionized (Table 1 reports demographics). All of the participants in our study provided written informed consent. The findings are based on a total of 117 participants; one participant was excluded because she had to leave early and was not asked any of the family questions. One participant was interviewed via telephone at their request.

Interviewers used interview guides and probing techniques to increase the depth and quality of responses to the open-ended questions [28]. For this paper, our analysis focuses on data obtained when HSWs were asked about their interactions with and perspectives of clients’ family members (Table 2 contains interview questions). Interviews were conducted face-to-face at different locations (e.g., participant’s home, library) and ranged from 60 to 90 min. They were digitally recorded, transcribed verbatim and saved using ID numbers and pseudonyms. The pseudonyms are used within this manuscript. Nvivo 10 software was used to manage our data.

Our analysis team consisted of post-doctoral fellows, a masters prepared research assistant and the principal investigators of the study, all experienced in qualitative research and analysis. Transcripts were reviewed using framework analysis, framework analysis is better adapted to research that has specific questions and a pre-designed sample. The prime concern is to describe and interpret what is happening in a particular setting, in this case the home care setting [29]. It is heavily based in, and driven by, the original accounts and observations of the people it is about, and it allows within-case and between-case analysis, it is comprehensive [30]. In the analysis, data is sifted, charted and sorted in accordance with key issues and themes using five steps: 1. familiarize; 2. identify a thematic framework; 3. index; 4. chart; 5. map and interpret [29, 30]. The following topic codes, alongside excerpts of data and preliminary definitions, were discussed during team analysis meetings: ‘HSWs help families’; ‘families help HSWs’; ‘families hinder HSWs’; ‘relational responses’; ‘respite’ and ‘strategies’. Through an inductive iterative process, using memo writing and analysis meetings, our team developed analytic codes that included: ‘interdependent interactions’, ‘strained interactions’, and ‘empathetic awareness’. Coding and final themes reported were developed through a process of collaboration and consensus amongst the authors via memos and analysis meetings.

Rigour was established through a combination of techniques that included a recording of decisions made throughout data collection and analysis (i.e., an audit trail), peer debriefing among members of the research team to promote reflexivity, via focused discussion about the developing themes, and extensive memo writing [31‐33].

Families helped workers to provide care that took into account client routines and preferences by sharing information and expertise –families essentially ‘filled in’ knowledge for workers and compensated for information that they did not have or could not ascertain from clients. Melissa, a home care worker, explained how the family provided information that made it easier for her to provide quality care for the client:

… “Today, mom’s had a really rough time… she didn’t sleep all night long, so she’s going to be a lot weaker.” …So they’ll give you some advice that’s happened to them, which really helps us to go with our task.

In addition, families provided information about the home space that was critical to care provision, particularly during first visits to the home. Quinn explained:

…they have to show you where things are ‘cause you’re going into a home blind. You need to know where the towels, all the bathroom stuff is… the cleaners… what belongs to the client, and what belongs to the rest of the family. Where the client sleeps, where the client eats. Is there special food just for the client…?

Further, HSWs perceived themselves to be sources of both information and instruction for family members, and thereby compensated for what families did not know about caring for their relatives. For instance, workers taught families how to safely reposition and transfer their older relative, avoid bedsores, prevent spread of disease in the home and handle various medical conditions. Julie described a situation in which she taught the wife of a client how to better reposition her husband in a way that would decrease her chance of injury when doing transfers:

They’re [family] trying to tell you how to get …them, out of the bed, especially a woman if you’re helping her husband. And I’ll say, “It’s okay. I know what I’m doing.” “But that’s not the way I do it.”…“No, but you have a sore back every day, don’t you?” “Well, yeah.” “Well, that’s because you’re not doing it right.” “Oh.”

Although families sometimes doubted her, Julie was able to explain to them the benefits of her technique; in doing so she filled both an instructional and preventative role. HSWs also told families about agency or community services that they could access and provided ‘tips’ for caring for their family member, such as the use of larger incontinence pads and pill crushers. HSWs updated family members about clients’ needs, behaviors, and health status. HSWs perceived this role to be especially helpful for family members, and particularly for those adult children who did not live in the same home as the client:

Sometimes they like to talk, “How you doing? What’s happening? Is everything okay? Does my mum need something? Just please let us know.” So… it’s really good to be close to the family. Because they want to know what’s happening … And you are there all the time.

With their regular presence in the home, workers were positioned to report on changes in a client’s condition, and provided family members with information about their relative. As well, HSWs discussed how they ensured that their clients were receiving comprehensive care by updating families when a client was low on medication, supplies or groceries.

HSWs noted that families work to ensure that the home environment was an appropriate place to receive and provide care for their loved ones. They did this by purchasing supplies and ‘setting up’ prior to the arrival of the HSW. Gwyneth talked about how a family member provided extra assistance that facilitated her own work:

One daughter definitely puts herself out a lot before she leaves to make sure that there’s veggies prepared ahead of time…to give you a head start because this client is very, very slow, right. So she’s very good in that aspect.

In addition, families assisted with care activities that workers could not complete on their own, such as lifting or transferring heavy clients. They also helped HSWs to complete care tasks within the designated time frame, or finished workers’ tasks when out of time. For instance, Melissa described how families assisted her with set-up when working within tight timeframes:

… you’re given an hour to do specific amount things and …if they’re in wheelchairs and you got to transfer them, you don’t have time maybe to get their clothes laid out…so their family member will have their clothes laid out… and they’ll have things ready.

Workers perceived that family members added to their instrumental workload by creating messes in the home, or by adding their dishes and laundry to those of the client so that the worker would have to also attend to them. Adding tasks beyond those prescribed for the client was predominately an issue in intergenerational households, where younger adults and children lived with the client. Katie explained:

And sometimes family members want you to do things that you’re not allowed to do… I’ve been to a client’s house before…and the son wanted me to do his laundry… “actually, no, I’m not here for you,”…

Several workers felt that families interfered with the plans they had for the time they spent with clients. Melissa explained:

…sometimes they can mess things up for us. We might have already planned what we’re going to give them for their meals, and then they come in and they take it away, and it’s like, “Well, I thought I had that sandwich made and everything.” Now, I’ve got to redo the sandwich or something. So now they’ve really…messed our schedule up. They’ve messed things up.

Carolyn also explained that in some circumstances, their workload was increased when families did not respond to requests for supplies:

Some because, see, you need equipment like rubber gloves… to clean the bathroom or a mop or a broom…And they go, “Oh, yeah, yeah, yeah,” and you never see those things.

Family members’ concerns were sometimes experienced by workers as criticism, with negative repercussions for all parties involved. A few workers reported that when they felt criticized or uncomfortable, they limited their interactions with the family, or rushed to avoid an unpleasant situation. For instance, Julie explained, “I really prefer them not to be there ‘cause they’re very critical. They know best… and you just kinda learn to turn the hearing aid off and just go about your business and you get it done and you get out.” In more contentious situations, workers were asked for proof of education, or engaged in disputes with family members regarding how care was provided. Care provided in the ‘home’ presented challenges for workers in terms of interactions with families who expected a level of knowledge about ‘each’ home and client that workers could not or did not always possess. Devon explained that it was difficult to remember ‘how’ everyone liked things done:

… they prefer us to follow their way…the way to do the food, the way to put.. the way to clean… the washroom… have to…follow her way. So that’s quite…difficult…because we go to different clients every time, how can we remember different clients, different…way to work for them.

Workers also described situations where they found themselves caught in the middle of family disputes and attending to family demands, expectations and conflicts which added an emotional layer of complexity to their workday.

Empathic awareness, an appreciation of the conflicting and negative emotions and feelings experienced by family members [34], was evident in our data as a factor that influenced interactions between workers and families. Workers expressed empathy for families, whom they understood to be just trying to do the best they could under the circumstances:

If you go into a new situation and they see a different worker…some of them get nasty. “I’m, you know, I’m sorry that your other worker is on holidays but, you know, I’m here to provide a service,” and you try to explain to them that. But they build up a relationship with someone else and having someone new, like they just don’t like it sometimes.

Several workers described the use of passive strategies, such as avoiding confrontation, ignoring issues or being flexible, in order to ease interactions with family members. Through their decisions to act passively in acknowledgment of the pressures that caregivers face HSWs demonstrated empathic awareness of these family situations:

I’ve had family members where they go ballistic on you… But in the end, you just have to let them go through their little phase and then they’re fine, right? So some can be a little bit difficult at times. But it’s just that they get themselves worked up.

Despite some of the challenging family behaviours encountered, workers were very aware of what the provision of care means to families especially the respite experienced by families during worker visits. Justine explained:

Because it’s the only time they get sometimes to go out. One or two hours we provide them and that’s the only time they get, like, a husband who is looking after the wife and he only gets two hours when I’m there or somebody’s there. For that two hours they can do the-- go shopping or anything like that within that time.

The Care Plan is an organizational tool developed by the agency employing the HSW, to guide the scope of care tasks provided in the home. The Care Plan was frequently at the heart of disagreements between workers and families. Previous literature has identified that case managers, those who organize the overall Care Plan, often structure HSW’s role to be supplementary to informal, family caregivers [35]. However, in many situations, workers and family members were working at ‘odds’ because of an organizational plan for services to which workers were expected to adhere, but which families often felt was inadequate. In the majority of cases, conflicts arose due to disagreements about the scope of the care provided by home support services.

Workers frequently discussed how the Care Plan document framed their interactions with family members. Stella stated: “They will also sometimes add extra duties other than on the care plan. Then you gotta explain to them again, yeah.” As Stella observes, dealing with families’ expectations in relation to the care plan can be time consuming; many workers mentioned having to provide family members with multiple (re) explanations of the care plan. As well, workers expressed frustration about families asking them to perform housekeeping duties not listed in the Care Plan. Occasionally, requested tasks were not even legitimate functions in HSWs’ job descriptions (e.g., vacuuming and dusting or more demanding jobs, such as cleaning the attic). Justine explained:

… sometimes you feel like that they’re too nosey and they are trying to make you do more work, more than you are supposed to be doing…They think that we are their maids…Like they want us to do cleaning the windows and do everything, do the dishes for the whole family and everything.

HSWs depend on the knowledge of families to provide personalized care in older client’s home settings, something they know is important to families [9], and to home care clients [26]. In order to optimize care, home care agencies should endeavour to support and sustain positive working relationships between workers and families by facilitating clear and shared expectations regarding care and the scope of work provided. This could be done through traditional case management conferences or through in-service training sessions involving families, workers and managers. The natural partnership that is possible between families should be acknowledged and supported. In doing so, with additional training, shared understanding of the scope of the HSWS role and clear mechanisms for communication and conflict resolution, many of the issues faced by workers (and families) could be alleviated.

Our findings underscore HSWs’ relational competence – the ability to empathize with the situations of others and to respect the work they do [42]. Specifically, HSWs demonstrated a deep understanding of home support as respite from the care that family members provide. The ability to tailor care to the needs of their clients and families, is critical to the development of partnership models of care [43]. As such, when Care Plans are too structured, there is little flexibility for HSWs and family members to make decisions about care. Care collaborations are generally considered to be relationships that “unfold over time within the context of and in response to multi-level factors” ([5], p. 30).

A limitation of this paper is that family members’ perspectives are not presented in these analyses. Where appropriate, we have compared and contrasted these findings to results as reported in an earlier publication about families’ perspectives of HSWs [9]. Future research based on matched pairs of HSWs and family members linked to the same client will further extend this line of enquiry. In addition, we recommend an observational research design that allows for an exploration of what workers do, not just what they say they do, during interactions with family members. We also limited our sample to those HSWs that could participate in an English interview, it may be that those with less proficiency in English would have a different, more marginalized experience. Again, an observational study would be of benefit for those who are less proficient in English.