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Home support workers perceptions of family members of their older clients: a qualitative study Sims-Gould, Joanie; Byrne, Kerry; Tong, Catherine; Martin-Matthews, Anne Dec 12, 2015

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RESEARCH ARTICLE Open AccessHome support workers perceptions offamily members of their older clients: aqualitative studyJoanie Sims-Gould1*, Kerry Byrne2, Catherine Tong3 and Anne Martin-Matthews4AbstractBackground: Health care discourse is replete with references to building partnerships between formal and informalcare systems of support, particularly in community and home based health care. Little work has been done toexamine the relationship between home health care workers and family caregivers of older clients. The purposeof this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ familymembers. The goal of this research is to improve client care and better connect formal and informal care systems.Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in BritishColumbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including:memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcriptionagency. Nvivo 10 software was used to manage the data.Results: Interactions between HSWs and family members are characterized in terms both of complementary labour(family members providing informational and instrumental support to HSWs), and disrupted labour (family memberscreating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathicawareness, further impact the relationship between HSWs and family caregivers.Conclusions: HSWs and family members work to support one another instrumentally and emotionally throughinterdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in theirscope are key factors constraining interactions.Keywords: Home health care, Home care, Family caregivers, Direct care workers, Informal/formal care partnerships,Domiciliary care, CaregivingBackgroundFor many older people, receipt of home care services isthe only option that enables them to remain independ-ently and safely in their home. Between 2008 and 2011,Canadian home care clients increased by 55 %. Atpresent, more than 1.4 million Canadians receive pub-licly funded home care services annually. As the popu-lations continue to age and with earlier discharges fromhospital, the need for home care [1] and associatedcosts will continue to escalate.Often referred to as the ‘eyes and ears’ of home care[2], home support workers (HSWs) - also known asdomiciliary, direct care or paraprofessional workers -provide assistance for older adults in the communitywith tasks such as bathing, dressing, medication use, toi-leting, and light household tasks [3]. Alongside receivingpaid home care services, older adults are also likely tohave the support of a family member, often referred toas a family caregiver [4]. It is well documented that olderadults who do not have a family caregiver are at greaterrisk for institutionalization and that a critical step insupporting older adults in the community is to betterunderstand the needs of their family caregivers [5].In the last decade, there has been a notable shift indiscourse towards the sharing of care between paid* Correspondence: joanie.sims-gould@hiphealth.ca1Department of Family Practice, Centre for Hip Health and Mobility,University of British Columbia, 2635 Laurel St, Vancouver, BC V5Z 1M9,CanadaFull list of author information is available at the end of the article© 2015 Sims-Gould et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Sims-Gould et al. BMC Geriatrics  (2015) 15:165 DOI 10.1186/s12877-015-0163-4health-care professionals and unpaid family caregivers[6–8] and the promotion of partnerships between formal(paid) and informal (family) caregivers for older adultsreceiving home care. Together, HSWs and families pro-vide the bulk of care for older adults living at home.Sims-Gould & Martin-Matthews [9] report that familymembers perceive that they ‘share the care’ with HSWs.However, the perspectives of HSWs about the familymembers of their older clients are less well known.Timonen notes that “formal and informal care occurs intandem more prominently in the community context”([10], p. 307), as in the delivery of home based care. Inthis study, we extend our understanding of home basedcare through an examination of HSWs perceptions oftheir older clients’ family members. In particular, wefocus on whether HSWs view family members as helpingand/or hindering them in the delivery of home basedhealth care to older clients.During a time of worker shortages and increased focuson recruitment and retention initiatives for HSWs [2],there is a need for an improved understanding of workerexperiences, including their interactions with familymembers [4, 5, 11]. A better understanding of HSWsperspectives about family members will complementexisting research about family caregivers’ perspectives ofHSWs and HSWs’ perspectives of their clients.Home support workers perceptions of familyMost research about health care staff perceptions offamilies has been in the nursing literature or in residen-tial care settings e.g., [6, 11, 12]. The provision of care ina residential care setting is very different than receivingcare 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 residentialcare) encountering numerous clients, various familymembers and unpredictable interpersonal circumstances[13]. Unlike in residential care settings, HSWs do all ofthis in the absence of immediate, accessible supervisionor staff support [14].Moreover, existing research about relationship aspectsof home support work typically focuses on interactionsbetween clients and workers [10, 15–19]. Workers’ per-ceptions of family members are typically embedded indiscussions of clients or of workers’ perspectives gener-ally e.g., [15, 20] . To date, there are three studies thatbroadly address HSWs’ perceptions of family membersof older adult clients [21–23]. Chichin [21] show that,for the most part, workers rated their experiences withfamilies as positive (e.g., 80 % reported that families werevery or somewhat helpful). The most common com-plaint was that families treated workers as maids; as well,workers’ job satisfaction declined when families expectedthe workers to go beyond what they perceived their jobdescription to be in the home. Fischer and Eustis [22]describe three types of interactions between workers andfamilies: caregiving alliances, conflict and separateworlds. Hokenstad and colleagues [23] explore HSWs’perspectives about their interactions with family care-givers with a focus on understanding worker-family in-teractions when ending formal home care services. Insuch circumstances, workers display empathy for fam-ilies and stress the importance of establishing clearboundaries. They also report that families are a criticalsource of information about clients. Even though attri-butes of relationships, such as companionship, trust andconflict, are identified as critical for partnerships be-tween families and workers in health care settings e.g.,[12, 24], this is an underdeveloped area of investigationin the home care literature.In addition to describing the nature of the relationshipbetween HSWs and family caregivers, we extend previ-ous work and examine whether HSWs view family mem-bers as a help and/or a hindrance in the delivery ofhome based health care. Our work is guided by a socio-ecological approach [25] in that we pay particular atten-tion to individual, organization and societal influenceson HSW experiences of family members.MethodsThis study is based on data from a larger mixed-methods study about home care delivery to older clients,involving home care managers, HSWs, older clientsthemselves and their family members [9, 13, 26, 27].Qualitative and quantitative data was collected throughin-depth semi-structured interviews. Drawing on thequalitative interview data, this paper focuses on theHSWs’ perceptions of clients’ family members.Setting and participantsEthics approval was granted from the University of BritishColumbia Behavioural Research Ethics Board (BREB) andthe Fraser Health Authority Ethics Board, the regionalhealth authority in which our study was conducted. Datawere collected as part of a study that ran from March2007 to October 2012 in the Lower Mainland of BritishColumbia, Canada. Eligible HSWs were those able toparticipate in an English language interview and provid-ing care for clients aged 65 and over through a homecare agency. We also employed a second method ofrecruitment, identifying participants from a list ofworkers represented by the BC Government EmployeesUnion (BCGEU local 403). Every fourth worker on thelist was contacted. In all, 118 HSWs were interviewed:84 (71 %) were recruited through the agency methodand 35 (29 %) were recruited through the union (forSims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 2 of 9additional recruitment information see: [13]). All of theHSWs we interviewed were unionized (Table 1 reportsdemographics). All of the participants in our study pro-vided written informed consent. The findings are basedon a total of 117 participants; one participant was ex-cluded because she had to leave early and was notasked any of the family questions. One participant wasinterviewed via telephone at their request.Data collection and analysisInterviewers used interview guides and probing tech-niques to increase the depth and quality of responses tothe open-ended questions [28]. For this paper, our ana-lysis focuses on data obtained when HSWs were askedabout their interactions with and perspectives of clients’family members (Table 2 contains interview questions).Interviews were conducted face-to-face at different loca-tions (e.g., participant’s home, library) and ranged from60 to 90 min. They were digitally recorded, transcribedverbatim and saved using ID numbers and pseudonyms.The pseudonyms are used within this manuscript. Nvivo10 software was used to manage our data.Our analysis team consisted of post-doctoral fellows,a masters prepared research assistant and the principalinvestigators of the study, all experienced in qualitativeresearch and analysis. Transcripts were reviewed usingframework analysis, framework analysis is better adaptedto research that has specific questions and a pre-designedsample. The prime concern is to describe and interpretwhat is happening in a particular setting, in this case thehome care setting [29]. It is heavily based in, and drivenby, the original accounts and observations of the people itis about, and it allows within-case and between-case ana-lysis, it is comprehensive [30]. In the analysis, data issifted, charted and sorted in accordance with key issuesand themes using five steps: 1. familiarize; 2. identify athematic framework; 3. index; 4. chart; 5. map and inter-pret [29, 30]. The following topic codes, alongside ex-cerpts of data and preliminary definitions, were discussedduring team analysis meetings: ‘HSWs help families’; ‘fam-ilies help HSWs’; ‘families hinder HSWs’; ‘relational re-sponses’; ‘respite’ and ‘strategies’. Through an inductiveiterative process, using memo writing and analysis meet-ings, our team developed analytic codes that included:‘interdependent interactions’, ‘strained interactions’, and‘empathetic awareness’. Coding and final themes reportedwere developed through a process of collaboration andconsensus amongst the authors via memos and analysismeetings.Rigour was established through a combination oftechniques that included a recording of decisions madethroughout data collection and analysis (i.e., an audittrail), peer debriefing among members of the researchteam to promote reflexivity, via focused discussionabout the developing themes, and extensive memowriting [31–33].Results and discussionMost workers spoke passionately about their interactionswith families, in both positive and negative terms. HSWsnoted that family members can both help and hindertheir care efforts; in some cases family members can doboth simultaneously.Helpful efforts included informational and instrumen-tal support provided to workers from family members.HSWs underscored how families can provide them withinformational support related to the care of their olderclients and vice versa; they complemented one another’sTable 1 Participant CharacteristicsN = 117 Average RangeAge 50 27-65Number PercentGenderFemale 110 94.0 %EducationHigh School or less 35 30.0 %Some College or University 20 17.0 %Completed College or University 52 44.5 %Registered Nurse 10 8.5 %Place of BirthCanada 36 30.8 %Philippines 36 30.8 %Europe 10 8.5 %Other 35 29.9 %Average RangeYears Employed as HSW 12 <1- 29Number of Clients Per Day 4 1-9Work StatusCasual 34 29.1 %Part-time 11 9.4 %Full-time 72 61.5 %Table 2 Interview QuestionsFor those clients that have a spouse or partner, are they usually presentwhen you are working in their home?Do you have contact or reason to interact with him or her?If so, what is that interaction like? Do you get along?Do family members make your work more difficult? How?Do family members make your work more difficult? How?Do family members help your work? How?In your opinion, in addition to the care that you provide, do familymembers also provide care to your older clients? If yes, explain.Sims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 3 of 9labour by sharing vital techniques (e.g., for lifting, mak-ing transfers, etc.) necessary for safe care provision withfamilies. As well, HSWs outlined the complementary in-strumental support provided by families balanced by theadditional ‘work’ often generated when family memberswere involved. However, where interactions werestrained, in some cases, the family members disruptedlabour. HSWs also explained how their work washindered by the emotional ‘workload’ created or exacer-bated by family members. We further discuss comple-mentary and disrupted labor below. In addition, twoadditional factors will be discussed that mitigated therelationship between HSWs and family members –organizational service care plans which stipulatedlabour and empathetic awareness.Complementary labour: providing informational supportFamilies helped workers to provide care that took intoaccount client routines and preferences by sharing infor-mation and expertise –families essentially ‘filled in’knowledge for workers and compensated for informationthat they did not have or could not ascertain from cli-ents. Melissa, a home care worker, explained how thefamily provided information that made it easier for herto provide quality care for the client:… “Today, mom’s had a really rough time… she didn’tsleep all night long, so she’s going to be a lot weaker.”…So they’ll give you some advice that’s happened tothem, which really helps us to go with our task.In addition, families provided information about thehome space that was critical to care provision, particu-larly during first visits to the home. Quinn explained:…they have to show you where things are ‘cause you’regoing into a home blind. You need to know where thetowels, all the bathroom stuff is… the cleaners… whatbelongs to the client, and what belongs to the rest ofthe family. Where the client sleeps, where the clienteats. Is there special food just for the client…?Further, HSWs perceived themselves to be sources ofboth information and instruction for family members,and thereby compensated for what families did not knowabout caring for their relatives. For instance, workerstaught families how to safely reposition and transfertheir older relative, avoid bedsores, prevent spread ofdisease in the home and handle various medical condi-tions. Julie described a situation in which she taught thewife of a client how to better reposition her husband ina way that would decrease her chance of injury whendoing transfers:They’re [family] trying to tell you how to get …them,out of the bed, especially a woman if you’re helpingher husband. And I’ll say, “It’s okay. I know what I’mdoing.” “But that’s not the way I do it.”…“No, but youhave 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 wasable to explain to them the benefits of her technique; indoing so she filled both an instructional and preventativerole. HSWs also told families about agency or commu-nity services that they could access and provided ‘tips’for caring for their family member, such as the use oflarger incontinence pads and pill crushers. HSWs up-dated family members about clients’ needs, behaviors,and health status. HSWs perceived this role to be espe-cially helpful for family members, and particularly forthose adult children who did not live in the same homeas the client:Sometimes they like to talk, “How you doing? What’shappening? Is everything okay? Does my mum needsomething? Just please let us know.” So… it’s reallygood to be close to the family. Because they want toknow what’s happening … And you are there all thetime.With their regular presence in the home, workers werepositioned to report on changes in a client’s condition,and provided family members with information abouttheir relative. As well, HSWs discussed how they en-sured that their clients were receiving comprehensivecare by updating families when a client was low onmedication, supplies or groceries.Complementary labour: providing instrumental supportHSWs noted that families work to ensure that the homeenvironment was an appropriate place to receive andprovide care for their loved ones. They did this by pur-chasing supplies and ‘setting up’ prior to the arrival ofthe HSW. Gwyneth talked about how a family memberprovided extra assistance that facilitated her own work:One daughter definitely puts herself out a lot beforeshe leaves to make sure that there’s veggies preparedahead of time…to give you a head start because thisclient is very, very slow, right. So she’s very good in thataspect.Many HSWs talked about the importance of familymembers who purchased groceries and accompaniedclients to appointments, tasks which HSWs could nottypically do under the regulations of home support. AsSims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 4 of 9Noel noted, “yes they do [help], this daughter, she’s actu-ally a doctor… they buy the food for the parent.”In addition, families assisted with care activities thatworkers could not complete on their own, such aslifting or transferring heavy clients. They also helpedHSWs to complete care tasks within the designatedtime frame, or finished workers’ tasks when out oftime. For instance, Melissa described how familiesassisted her with set-up when working within tighttimeframes:… you’re given an hour to do specific amountthings and …if they’re in wheelchairs and you gotto transfer them, you don’t have time maybe to gettheir clothes laid out…so their family member willhave their clothes laid out… and they’ll have thingsready.Disrupted labour: creating additional instrumental workWorkers perceived that family members added to theirinstrumental workload by creating messes in the home,or by adding their dishes and laundry to those of theclient so that the worker would have to also attend tothem. Adding tasks beyond those prescribed for theclient was predominately an issue in intergenerationalhouseholds, where younger adults and children livedwith the client. Katie explained:And sometimes family members want you to do thingsthat you’re not allowed to do… I’ve been to a client’shouse before…and the son wanted me to do hislaundry… “actually, no, I’m not here for you,”…Several workers felt that families interfered with theplans they had for the time they spent with clients.Melissa explained:…sometimes they can mess things up for us. We mighthave already planned what we’re going to give themfor their meals, and then they come in and they take itaway, and it’s like, “Well, I thought I had thatsandwich made and everything.” Now, I’ve got toredo the sandwich or something. So now they’vereally…messed our schedule up. They’ve messedthings up.Carolyn also explained that in some circumstances,their workload was increased when families did not re-spond to requests for supplies:Some because, see, you need equipment like rubbergloves… to clean the bathroom or a mop or a broom…And they go, “Oh, yeah, yeah, yeah,” and you never seethose things.Disrupted labour: creating emotional workWorkers reported that in some cases, family memberswere disrespectful, rude and made them feel inadequateat their jobs. These strained type of interactions rangedfrom feelings of lack of respect for the workers’ roleand/or time, to verbally abusive behaviour from families.Several workers preferred to work in some homes whenfamily members were not present. Workers also com-monly 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 thebest for [their] parents, so they just watch you very in-tense and they watch you, something like that or some-times give you some order.”Family members’ concerns were sometimes experi-enced by workers as criticism, with negative repercus-sions for all parties involved. A few workers reportedthat when they felt criticized or uncomfortable, they lim-ited their interactions with the family, or rushed to avoidan unpleasant situation. For instance, Julie explained, “Ireally prefer them not to be there ‘cause they’re very crit-ical. They know best… and you just kinda learn to turnthe hearing aid off and just go about your business andyou get it done and you get out.” In more contentioussituations, workers were asked for proof of education, orengaged in disputes with family members regarding howcare was provided. Care provided in the ‘home’ pre-sented challenges for workers in terms of interactionswith families who expected a level of knowledge about‘each’ home and client that workers could not or did notalways possess. Devon explained that it was difficult toremember ‘how’ everyone liked things done:… they prefer us to follow their way…the way to dothe food, the way to put.. the way to clean… thewashroom… have to…follow her way. So that’squite…difficult…because we go to different clientsevery time, how can we remember different clients,different…way to work for them.Workers also described situations where they foundthemselves caught in the middle of family disputes andattending to family demands, expectations and conflictswhich added an emotional layer of complexity to theirworkday.Mitigating factor: empathic awarenessEmpathic awareness, an appreciation of the conflictingand negative emotions and feelings experienced by fam-ily members [34], was evident in our data as a factor thatinfluenced interactions between workers and families.Workers expressed empathy for families, whom theyunderstood to be just trying to do the best they couldunder the circumstances:Sims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 5 of 9If you go into a new situation and they see a differentworker…some of them get nasty. “I’m, you know, I’msorry that your other worker is on holidays but, youknow, I’m here to provide a service,” and you try toexplain to them that. But they build up a relationshipwith someone else and having someone new, like theyjust don’t like it sometimes.Several workers described the use of passive strat-egies, such as avoiding confrontation, ignoring issuesor being flexible, in order to ease interactions withfamily members. Through their decisions to act pas-sively in acknowledgment of the pressures that care-givers face HSWs demonstrated empathic awarenessof these family situations:I’ve had family members where they go ballistic onyou… But in the end, you just have to let them gothrough their little phase and then they’re fine, right?So some can be a little bit difficult at times. But it’sjust that they get themselves worked up.Despite some of the challenging family behaviours en-countered, workers were very aware of what the provisionof care means to families especially the respite experi-enced 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 onlytime they get, like, a husband who is looking after thewife and he only gets two hours when I’m there orsomebody’s there. For that two hours they can dothe– go shopping or anything like that within thattime.Several workers were sent to clients’ homes specificallyto provide formal respite care; however many simplyviewed their presence in the home as a form of respitefor family caregivers. They often spoke of this help,using general terms such as ‘a break’ or ‘relief ’. Further-more, when workers had limited interactions with familymembers, it was often because family members weremeant to be out of the home while HSWs were present,and thus gaining respite from their 24 h caregiving du-ties. Kristin explained, “We’re supposed to give them abreak, you know…That’s the whole idea. They’re sup-posed to go out…” Thus, limited interactions betweenthe workers and family members were not necessarilyindicative of a negative situation; rather, some workerswere insistent that because they are there for respite, thefamily should not be present. Workers were also carefulto note that the family members’ ability to receiverespite was predicated on rapport with and trust ofthe worker. Beyond making families feel comfortable,HSWs understood the important role that respite plays insupporting caregivers on an emotional or psychologicallevel; they often spoke of relieving ‘burden’ and diffusingstress.Contextualizing factor: organizational service plansThe Care Plan is an organizational tool developed by theagency employing the HSW, to guide the scope of caretasks provided in the home. The Care Plan was fre-quently at the heart of disagreements between workersand families. Previous literature has identified that casemanagers, those who organize the overall Care Plan,often structure HSW’s role to be supplementary to infor-mal, family caregivers [35]. However, in many situations,workers and family members were working at ‘odds’ be-cause of an organizational plan for services to whichworkers were expected to adhere, but which familiesoften felt was inadequate. In the majority of cases, con-flicts arose due to disagreements about the scope of thecare provided by home support services.Workers frequently discussed how the Care Plan docu-ment framed their interactions with family members.Stella stated: “They will also sometimes add extra dutiesother than on the care plan. Then you gotta explain tothem again, yeah.” As Stella observes, dealing with fam-ilies’ expectations in relation to the care plan can be timeconsuming; many workers mentioned having to providefamily members with multiple (re) explanations of thecare plan. As well, workers expressed frustration aboutfamilies asking them to perform housekeeping duties notlisted in the Care Plan. Occasionally, requested tasks werenot 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 andthey are trying to make you do more work, more thanyou are supposed to be doing…They think that we aretheir maids…Like they want us to do cleaning thewindows and do everything, do the dishes for thewhole family and everything.Workers reported that they contact their supervisorsor nursing managers in response to conflicts with familymembers, thereby seeking intervention from agency staffto mitigate a difficult situation with clients’ relatives.Workers also invoked the assistance of their employingagency when they were unsuccessful in explaining apolicy to a family member or needed advice on how todeal with challenging situations. Lydia explained howshe dealt with situations where families wanted her togo above and beyond the Care Plan: “You’ve just got totry and handle it as best you can for that day and thenphone the supervisor.”Sims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 6 of 9ConclusionsWe explored HSW-family interactions in home carefrom the perspective of workers. Corroborating researchfindings in care settings such as assisted living and nurs-ing homes [36], we found both positive and negative as-pects to these interactions e.g., ‘[11]. In most cases,family members played a role in shaping the quality ofthe HSWs’ work environment. While our results demon-strate that families helped by maintaining the home andthereby the work environment, we also found thatfamilies occasionally created additional work for HSWs.Encounters between HSWs and family members arehighly variable, ranging from entering one home to pro-vide respite for an exhausted caregiver to, in the nexthome, being confronted by a family critical of the worker’sapproach to meal preparation. Workers in our study vis-ited, on average, four clients per day, thus requiring themto adapt their approach to clients and to families from onevisit to the next.Even though the client in home care is the older per-son, the work and negotiations around care provisionvery much involve the family. This involvement can beinterdependent and provide a two way system of supportfor worker and family member. In this way, workers andfamily members are working together as allies in care,engaged in complementary labour [22]. On the otherhand, their engagement can be strained. Workers re-ported feeling watched and taken advantage of by familymembers; such experiences have direct implications forjob satisfaction and job tenure in the long term [37]. Inextreme circumstances workers felt violated and abused.HSWs conduct their work in what is traditionallythought of as the domain of the family - the privatesphere of the home. Working with families in intimate‘home space’ required interpersonal skills and sensitivity.Where the interactions with family are negative, thework is more difficult. This has implications for reten-tion of workers who identify the interpersonal aspects oftheir work as key to the reasons they like their job [27].HSWs discussed how family members helped themwith the tight timelines that they are allotted, often only50 min per client [38]. Family members helped with timepressures by setting-up, keeping the home tidy, assistingwith caregiving tasks and orienting the worker to thespace. Within a context of worker shortages [39] andfunding cutbacks [40], it is both frustrating for workersand inefficient for the system when HSWs must spendtime defending the scope of care, rather than providingdirect care to clients.Workers were, for the most part, very empathetic to-wards family members and recognized their unspokenrole in providing family caregiver support. Similarly,family members deeply value the contributions made byHSWs [9, 13]. It has been previously suggested thatHSWs need to recognize family caregivers as valuedcoworkers, and be more perceptive of the familymembers’ individual needs in order to optimize theeffectiveness of care [8]. However, our findings refutethis notion. Evidence from this study suggests thatmany HSWs acknowledge the reciprocal partnershipthat should ideally exist between formal and informalcaregivers, and act on that basis. Workers recognizedfamily stress, burden and frustrations [18, 22]. Inter-ventions to foster empathy between staff and clients’relatives have been developed in facility-based care[e.g., 41], and are certainly relevant in home care settings.Many HSWs were emphatic that family members re-quire respite from their caregiving duties. Researchershave noted the ethical dilemma inherent in advocatingfor partnerships with families to provide care, as it canlead to increased expectations and exploitation of therelatives [20, 41]. However, our research with HSWssuggests that workers do not seek to further exhaust orexploit family members; rather, they view their role asdoing precisely the opposite. Case managers often out-line the role of HSWs as supplementary to informalfamily care in order to promote the sustainability of thesupport system in the long-term [35]. Our researchindicates that many HSWs subscribe to this supple-mentary role, and often seek to provide support notonly to the client, but also to family members withinthe care network.Our analyses of home support worker and family dataillustrate how individual parties are constrained by thebroader health care system. Workers and family mem-bers are both ‘under pressure’ based on restrictive CarePlans, unmet needs and agency policies. As a result,family members [9, 13] frequently expressed a desire for‘task substitution’ (i.e. asking workers to sit and have acup of tea with their relative, rather than those outlinedin the Care Plan). Workers attempt to balance the needsand preferences of clients and family members with thecontractual obligation outlined in the Care Plan. Aworker who deviates from the Care Pan is subject todisciplinary action. In our study, several workersexpressed frustration when task substitution is expectedor demanded by family members. This again placesworkers in a difficult situations requiring them to bal-ance the satisfaction of family members, and their em-pathy for family members, against the tasks that theyare contracted to provide.Individual and organizational implicationsHSWs depend on the knowledge of families to providepersonalized care in older client’s home settings, some-thing they know is important to families [9], and tohome care clients [26]. In order to optimize care, homecare agencies should endeavour to support and sustainSims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 7 of 9positive working relationships between workers andfamilies by facilitating clear and shared expectationsregarding care and the scope of work provided. Thiscould be done through traditional case managementconferences or through in-service training sessions in-volving families, workers and managers. The naturalpartnership that is possible between families shouldbe acknowledged and supported. In doing so, withadditional training, shared understanding of the scopeof the HSWS role and clear mechanisms for commu-nication and conflict resolution, many of the issuesfaced by workers (and families) could be alleviated.Our findings underscore HSWs’ relational compe-tence – the ability to empathize with the situations ofothers and to respect the work they do [42]. Specific-ally, HSWs demonstrated a deep understanding ofhome support as respite from the care that familymembers provide. The ability to tailor care to the needsof their clients and families, is critical to the develop-ment of partnership models of care [43]. As such, whenCare Plans are too structured, there is little flexibilityfor HSWs and family members to make decisions aboutcare. Care collaborations are generally considered to berelationships that “unfold over time within the contextof and in response to multi-level factors” ([5], p. 30).LimitationsA limitation of this paper is that family members’ per-spectives are not presented in these analyses. Where ap-propriate, we have compared and contrasted thesefindings to results as reported in an earlier publicationabout families’ perspectives of HSWs [9]. Future re-search based on matched pairs of HSWs and familymembers linked to the same client will further extendthis line of enquiry. In addition, we recommend an ob-servational research design that allows for an explorationof what workers do, not just what they say they do, dur-ing interactions with family members. We also limitedour sample to those HSWs that could participate in anEnglish interview, it may be that those with less profi-ciency in English would have a different, more marginal-ized experience. Again, an observational study would beof benefit for those who are less proficient in English.AbbreviationsBCGEU: BC Government Employees Union; BREB: University of BritishColumbia Behavioural Research Ethics Board; HSW: home support worker;SD: standard deviation.Competing interestsThe authors declare no competing interests.Authors’ contributionsJSG conceptualized and designed the study, drafted the initial manuscriptand approved the final manuscript as submitted. KB carried out the dataanalyses, reviewed and revised the manuscript and approved the finalmanuscript as submitted. CT carried out the data analyses, reviewed andrevised the manuscript and approved the final manuscript as submitted.AMM conceptualized and designed the study, critically reviewed multipledrafts of the manuscript and approved the final manuscript as submitted.AcknowledgementsDr. Sims-Gould is supported by a Canadian Institutes of Health ResearchNew Investigator award and a Michael Smith Foundation for Heath ResearchScholar award. This paper is based on research funded by the CanadianInstitutes of Health Research (Research Grant #IOP-70684) to A. Martin-Matthews(PI), for the project “Home Care in Canada: Working at the Nexus of the Publicand Private Spheres.”Author details1Department of Family Practice, Centre for Hip Health and Mobility,University of British Columbia, 2635 Laurel St, Vancouver, BC V5Z 1M9,Canada. 2University of Waterloo, 200 University Ave W, Waterloo, ON N2L3G1, Canada. 3Centre for Hip Health and Mobility, University of BritishColumbia, 2635 Laurel St, Vancouver, BC V5Z 1M9, Canada. 4Department ofSociology, University of British Columbia, 6303 N.W. Marine Drive, Vancouver,BC V6T 1Z1, Canada.Received: 6 December 2014 Accepted: 7 December 2015References1. Canadian Home Care Association. Portraits of Home Care; 2013. [http://www.cdnhomecare.ca/content.php?doc=235].2. Stone RI, Dawson SL. The origins of better jobs better care. Gerontologist.2008;48:5–13.3. Havens B. 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Choice in the context of informal care-giving.Health Soc Care Comm. 2007;15:165–75.•  We accept pre-submission inquiries •  Our selector tool helps you to find the most relevant journal•  We provide round the clock customer support •  Convenient online submission•  Thorough peer review•  Inclusion in PubMed and all major indexing services •  Maximum visibility for your researchSubmit your manuscript atwww.biomedcentral.com/submitSubmit your next manuscript to BioMed Central and we will help you at every step:Sims-Gould et al. BMC Geriatrics  (2015) 15:165 Page 9 of 9


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