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

Home support workers perceptions of family

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.

Setting and participants

Data collection and analysis

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].

Complementary labour: providing informational support

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.

Complementary labour: providing instrumental support

Many HSWs talked about the importance of family members who purchased groceries and accompanied clients to appointments, tasks which HSWs could not typically do under the regulations of home support. As Noel noted, “yes they do [help], this daughter, she’s actually a doctor… they buy the food for the parent.”

Disrupted labour: creating additional instrumental work

Disrupted labour: creating emotional work

Workers reported that in some cases, family members were disrespectful, rude and made them feel inadequate at their jobs. These strained type of interactions ranged from feelings of lack of respect for the workers’ role and/or time, to verbally abusive behaviour from families. Several workers preferred to work in some homes when family members were not present. Workers also commonly observed that family members made them feel ‘watched’ or monitored in their work. As Monica noted, “They just worry about that you are not the doing the best for [their] parents, so they just watch you very intense and they watch you, something like that or sometimes give you some order.”

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.

Mitigating factor: empathic awareness

Several workers were sent to clients’ homes specifically to provide formal respite care; however many simply viewed their presence in the home as a form of respite for family caregivers. They often spoke of this help, using general terms such as ‘a break’ or ‘relief’. Furthermore, when workers had limited interactions with family members, it was often because family members were meant to be out of the home while HSWs were present, and thus gaining respite from their 24 h caregiving duties. Kristin explained, “We’re supposed to give them a break, you know…That’s the whole idea. They’re supposed to go out…” Thus, limited interactions between the workers and family members were not necessarily indicative of a negative situation; rather, some workers were insistent that because they are there for respite, the family should not be present. Workers were also careful to note that the family members’ ability to receive respite was predicated on rapport with and trust of the worker. Beyond making families feel comfortable, HSWs understood the important role that respite plays in supporting caregivers on an emotional or psychological level; they often spoke of relieving ‘burden’ and diffusing stress.

Contextualizing factor: organizational service plans

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 reported that they contact their supervisors or nursing managers in response to conflicts with family members, thereby seeking intervention from agency staff to mitigate a difficult situation with clients’ relatives. Workers also invoked the assistance of their employing agency when they were unsuccessful in explaining a policy to a family member or needed advice on how to deal with challenging situations. Lydia explained how she dealt with situations where families wanted her to go above and beyond the Care Plan: “You’ve just got to try and handle it as best you can for that day and then phone the supervisor.”

Individual and organizational implications

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).

Limitations

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.