Most workers spoke passionately about their interactions with families, in both positive and negative terms. HSWs noted that family members can both help and hinder their care efforts; in some cases family members can do both simultaneously.
Helpful efforts included informational and instrumental support provided to workers from family members. HSWs underscored how families can provide them with informational support related to the care of their older clients and vice versa; they complemented one another’s labour by sharing vital techniques (e.g., for lifting, making transfers, etc.) necessary for safe care provision with families. As well, HSWs outlined the complementary instrumental support provided by families balanced by the additional ‘work’ often generated when family members were involved. However, where interactions were strained, in some cases, the family members disrupted labour. HSWs also explained how their work was hindered by the emotional ‘workload’ created or exacerbated by family members. We further discuss complementary and disrupted labor below. In addition, two additional factors will be discussed that mitigated the relationship between HSWs and family members – organizational service care plans which stipulated labour and empathetic awareness.
Complementary labour: providing informational support
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.
Complementary labour: providing instrumental support
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.
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.”
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.
Disrupted labour: creating additional instrumental work
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.
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.”
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.
Mitigating factor: empathic awareness
Empathic awareness, an appreciation of the conflicting and negative emotions and feelings experienced by family members , 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.
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 . 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.
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.”