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From home to ‘home’: Mapping the caregiver journey in the transition from home care into residential care
Journal of Aging Studies 43 (2017) 32–39
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Journal of Aging Studies journal homepage: www.elsevier.com/locate/jaging
From home to ‘home’: Mapping the caregiver journey in the transition from home care into residential care
MARK
Taylor Hainstocka, Denise Cloutiera,b,⁎, Margaret Penninga,c a b c
Institute on Aging & Lifelong Health, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8P 2Y2, Canada Department of Geography, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada Department of Sociology, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada
A R T I C L E I N F O
A B S T R A C T
Keywords: Transition Home care Residential care Family caregivers Long-term care
Family caregivers play a pivotal role in supporting the functional independence and quality of life of older relatives, often taking on a wide variety of care-related activities over the course of their caregiving journey. These activities help family members to remain in the community and age-in-place for as long as possible. However, when needs exceed family capacities to provide care, the older family member may need to transition from one care environment to another (e.g., home care to nursing home care), or one level of care to another (from less intense to more intensive services). Drawing upon qualitative interview data collected in a populous health region in British Columbia, Canada, this study explores the roles and responsibilities of family caregivers for family members making the care transition from home care to residential care. A thematic analysis of the interview transcripts resulted in the development of a conceptual framework to characterize the “Caregiver Journey” as a process that could be divided into at least three phases: 1) Precursors to transition - recognizing frailty in family members and caregivers prior to transition; 2) Preparing to transition into residential nursing home care (RC) and 3) Posttransition: Finding a new balance - where caregivers adjust and adapt to new caregiving responsibilities. Our analyses revealed that the second phase is the most complex involving a consideration of the various activities, and roles that family caregivers take on to prepare for the care transition including: information gathering, advocacy and system navigation. We conclude that there is a need for family caregivers to be better supported during care transitions; notably through ongoing and enhanced investments in strategies to support caregiver communication and education.
Introduction Family caregivers play an instrumental role in supporting the functional independence and quality of life of family members as their health status declines, and their need for care and assistance increases (Gitlin & Wolff, 2011; Levine, Halper, Peist, & Gould, 2010). Some of the care specific activities that family members provide assistance with include help with eating, bathing, laundry, emotional support and companionship, as well as assistance with obtaining formal health and longterm care (LTC) services (Cranswick & Dosman, 2008; Gitlin & Wolff, 2011; Levine et al., 2010; Rosenthal, Martin-Matthews, & Keefe, 2007; Taylor & Quesnel-Vallée, 2016). Other activities family caregivers take on in the caregiver journey include help with tasks that extend beyond the provision of direct, “hands on” care, and into the realm of what might be labelled “care management.” Care management includes such tasks as information seeking, handling finances, doing relevant paperwork, and coordinating family support efforts (Rosenthal et al., 2007).
⁎
Current research suggests that around 5.4 million Canadians provide care to an older family member or friend (Turcotte & Sawaya, 2015). The real scope of caregiving however, is likely greater than what is reported, as caregivers' often underreport their caregiving activities. Moreover, the intensity of caregiving support is greatest for those living with a care recipient. Family caregiving for those living in facilities is also notably high in intensity, with 22% of those in this group indicating that they provide 10 or more hours of care a week (Turcotte & Sawaya, 2015). Generally speaking, family caregivers are seldom considered to be integral members of the ‘team’ within the long-term care (LTC) sector (Dilworth-Anderson & Palmer, 2011). As a consequence, limited attention has been paid to how these caregivers' manage a family member's transition from home care (HC) into a residential, nursing home (RC) care setting, despite this being one of the most common care trajectories experienced by clients (Cloutier & Penning, 2017). Care transitions can be defined as movements from one system of care to another, (e.g., home care to residential care, or one level of care to another) and arise in
Corresponding author at: Institute on Aging & Lifelong Health, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8P 2Y2, Canada. E-mail address: [email protected] (D. Cloutier).
http://dx.doi.org/10.1016/j.jaging.2017.09.003 Received 13 July 2017; Received in revised form 22 August 2017; Accepted 1 September 2017 0890-4065/ Crown Copyright © 2017 Published by Elsevier Inc. All rights reserved.
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health services such as respite, convalescent, and end of life care; and ultimately, may result in decreased quality of life for both the caregiver and care recipient (Health Council of Canada, 2012).
response to changes in health status, and when the need for additional care exceeds family caregiving resources and capacities (Callahan et al., 2012; Coleman & Boult, 2003). The formal LTC sector comprises a wide-range of publicly and privately funded services designed to address the health, social, and personal care needs of individuals who have lost some capacity for self-care (Federal/ Provincial/Territorial Subcommittee on Continuing Care, 1992). Although LTC occupies a pivotal place in the care continuum, as in other sectors, the supports and services that it provides have been heavily criticized as being fragmented, poorly coordinated, and difficult to access due to variability in provincial policies, funding levels, availability, and eligibility criteria (Chappell & Hollander, 2013; Havens, 1995). Research has shown that older adults are more vulnerable to negative outcomes during care transitions based on their increased frailty, and a lack of continuity in care between health sectors and systems (Dilworth-Anderson & Palmer, 2011). Some of these specific outcomes include: medication errors, poor compliance, inappropriate care and increased hospitalizations (Coleman, 2003; DilworthAnderson & Palmer, 2011; Sato, Shaffer, Arbaje, & Zuckerman, 2011). Care transitions mark significant changes in the lives of older adults, but can also have a significant impact on the lives of family caregivers, including family, friends, and neighbours who bear the lion's share of responsibility for facilitating these relocations (Coleman, Parry, Chalmers, & Min, 2006; Giosa, Stolee, Dupuis, Mock, & Santi, 2014; Moon, 2016). Forced to work largely on their own, within the boundaries of an unfamiliar health care system where eligibility criteria, financing standards, and policies determine the level of care their family member receives, caregivers routinely experience the stress that the transition into RC generates. (Afram, Verbeek, Bleijlevens, & Hamers, 2014; Ashbourne, 2015). This study explores the primary research question: How do family caregivers navigate and experience the transition from HC into RC for a family member?
Methods This study was conducted in a populous and diverse health region located in Western Canada. We stratified the region into three contiguous geographic sub-regions: urban, suburban, and rural based on a range of attributes, including population density and growth rates; number of health care providers per capita; number of hospitals, number of hospital and residential care beds; and nature of economic diversity and development. With lower population densities and fewer economic and health resources in rural communities, our expectations were that aspects of the family caregiver experience and journey would differ depending on where family members were located and receiving care. Sampling and data collection In this study, all caregivers were related by blood or marriage to the older adult who was making the transition from HC to RC. Health region representatives on the research team (Hainstock) facilitated initial contact with local RC facilities to support recruitment. These methods included flyer distribution and in-person efforts by the lead author through attendance at facility-hosted family information sessions. Family caregivers who self-identified as the primary person involved in the management of their family member's move from HC into RC in the past five years were recruited to participate. Ethical approval was obtained prior to conducting the interviews through the BC Ethics Harmonization Initiative, a joint process involving the University of Victoria and the health region in which the study took place. While the original goal was to generate a total sample of 30 caregivers, 10 in each type of geographical setting (urban, suburban and rural), recruitment proved more challenging given time and other pressures facing the existing workforce. In the end, a total of 15 one-onone, semi-structured interviews were undertaken between July 1st and November 30th, 2015. Fourteen interviews were held in the caregiver's home, and one was held in a private meeting room at the RC facility in which their family member received care. All family caregivers were still caring for family members at the time they were interviewed, although the move from HC into RC occurred anywhere from 13 months, to five or more years earlier. Interviews ranged from 45 to 150 min in length. Each interview was taped and transcribed. After each interview, field notes and journal entries were recorded. Seven of the 15 interviews were completed with urban, three with suburban, and five with rural caregivers. Nine interviews were conducted with daughters caring for an older parent (eight were caring for their mother, and one for their father), while five were conducted with a caregiving spouse or common-law partner. One interview took place with a husband and wife who provided care jointly to the wife's sister. In this case, both caregivers had equal opportunity to respond to the questions. This resulted in a final sample of 16 caregivers. All caregivers were assigned pseudonyms, and all interviews were matched with numeric identifier codes to protect anonymity and confidentiality for participants. Caregivers ranged in age from 46 to 87. Most were married (n = 9); four were single, two were divorced, and one was in a common-law relationship. The majority of those interviewed had some level of postsecondary education, with only two caregivers indicating high school as their highest level of education. Only two women were employed at the time of the interview, while 13 were retired, and one was unemployed. Caregivers lived between 1.4 km and 34.8 km from their family member's care facility. Family caregivers were asked questions in two key areas: about the kinds of care activities they had engaged in before, during and after the
The study context Aging trends and increased longevity are altering the demographic profile of many countries around the world. While the majority of older adults live independently in their own homes in the community, in Canada, as in other jurisdictions, age is associated with the increased likelihood of the need for formal LTC services (CIHI, 2011; Luppa et al., 2010; Sivanthan, Lavergne, & McGrail, 2015). Between 2011 and 2016, the number of people aged 85 and over grew by 19.4%, nearly four times the rate for the overall Canadian population (Statistics Canada, 2017). In the province of BC, where this research is set, LTC includes a broad continuum of home and community-based services, often called home care (HC), that includes home nursing and personal support work; assisted living (AL) that is, housing for semi-independent older adults; and residential care (RC) for those who need more intensive and supportive care on a continuous, 24-h basis. When an individual can no longer live safely or independently at home, due to substantial changes in medical and functional health, RC may be the only option. In BC, admission to RC requires contacting the local health authority and requesting a formal assessment by a case manager to determine eligibility. From there, individuals and families are asked to identify their top three RC facility choices based on needs, and are then placed on a waitlist until a suitable bed becomes available. According to a recent report by the Office of the Seniors Advocate for BC (2016), the demand for HC and RC services has been increasing, while the range and mix of these services has been shrinking. Alongside increased demand for LTC resources, there has been a corresponding increase in pressure on family caregivers due to the dynamics of increased divorce rates, decreased fertility rates, and greater geographic distances for family members to overcome in caring for their loved ones (Chappell, 2011). These challenges contribute to caregiver stress and burnout; place greater demands on specific kinds of 33
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a while and I- I felt guilty about it, you know? But I was- once I made that decision, I still felt guilty, but it was a decision I knew I had to make.
care transition; how they made sense of their caregiving roles and responsibilities; and their specific experiences in managing and navigating the move from HC into RC.
Sharon, who helped her mother to make the transition in 2014, expressed similar feelings, “…that was really tough for me to accept the fact that I had done all I had done for so long, and then had to ‘give in’ and take her up there [to the facility].”
Thematic analysis Qualitative data software (NVivo v.8) was used to organize and facilitate the thematic analysis for this research. Several strategies were applied to ensure study trustworthiness, an important criterion and measure of interpretive validity and worth (Baxter & Eyles, 1997). These strategies included triangulation based on the interviews, observations, literature sources, and field notes accumulated during the study (Altheide & Johnson, 1994; Lincoln & Guba, 1985). Memoing/ journaling and regular peer debriefing sessions occurred with research team members to further support trustworthiness. Thick descriptions of caregiver experiences were compiled and focused on rich and salient details, including gestures and body language, captured during the interviews. These details were retained in the transcripts for analytical purposes and to enhance interpretive validity and trustworthiness (Baxter & Eyles, 1997; Lincoln & Guba, 1985). Following the completion of data collection and transcription, interview summary sheets were developed which combined field notes and journal entries to capture the main ideas emerging from each interview (Miles & Huberman, 1994). These documents were reviewed extensively by Hainstock and shared with the research team. For each interview, a visual timeline was diagrammed to depict the chronology of the caregiving trajectory for each caregiver as a way of enriching and deepening the thematic analysis. Excerpts from transcripts were also coded and analysed thematically to identify, organize, and develop themes and patterns in the data (Braun & Clarke, 2012). At the end of this process and working inductively with the data, the research team developed a conceptual framework to depict the ‘Caregiver Journey’ highlighting the care transition from HC into RC as a process involving three key phases.
Preparing for the care transition After the decision to relocate into RC had been made, caregivers became focused on ensuring coordination and continuity of care for their family members. A series of new functions and roles were required including information seeking, advocating, and navigating the LTC system's rules, regulations, and procedures leading up to moving day. Mona emphasized the number of activities she has helped her sister with over the years, noting “I mean, there's so, so much. I could, you know, write a long list of all the things [laughing].” In general, family caregivers wanted to involve their family members as much as possible in the decision making related to care planning, but often, dementia status or stubborn personalities made it difficult. Mary mentioned, “I think one of the hardest things is–can be, convincing the ill person that they need to go into the care home.” Knowledge gaps and information seeking Upon entering the system, caregivers described feeling “naïve” and “unfamiliar” with the policies and protocols of LTC. For example, Amelia spoke about her experience (five years earlier), in the hospital leading up to the relocation of her mother: “…even if you ask questions and you get answers, it doesn't necessarily-like when you're actually there, right there, it's completely overwhelming.” She added, “…they hand you the pamphlet and you are distressed [and] you don't really read it, but you read what you want to see. You read what you believe is right for your mother.” Caregivers' also consistently underscored the importance of acquiring as much information as they could from both formal (e.g. social workers, case managers and other health professionals) and informal (e.g., friends and family) sources and support networks. Mona noted, “…it would have helped us a lot I think had there been more information available as to how to deal with this sort of…, this sort of process. Just, you know, the steps involved in getting there and what to look for.” Two of the caregivers who participated had healthcare backgrounds that helped them with navigational and information seeking tasks. However, those without such expertise found it challenging to acquire and understand the limited information that seemed available to them. Sharon explained her approach as being centered in self-teaching: “Um, you know I've just shopped. I've just gone around and figured out things, but I don't know how I've learned the system [laughs]. I don't think anyone's really taught me what the system is, I just sort of figured it all out.” In this information gathering phase, caregivers' relied on multiple sources of information to help make decisions about the transition into RC. Social workers stood out as particularly important resources. Those who experienced challenges in gathering information largely attributed their challenges to there being insufficient communication between themselves and the health care professionals. Tina spoke about one of the many home-to-hospital moves her partner had experienced prior to entering RC: “[I got] no information, not even about him being transferred [from hospital to RC]. Nothing. Um, that was the key. There was absolutely no information.” Communication between health care professionals across different care settings (e.g., family doctor, and the doctor on-call at the time of hospitalization) was also noted as being problematic and complicating information flows and related caregiving efforts.
Findings The findings are organized to address the six different themes, including three sub-themes that emerged from the data to address the research question: How do family caregivers navigate and make sense of the transition from home care (HC) into residential care (RC) for a family member? Increasing frailty For those making the transition from HC into RC, the vast majority of caregivers (87.5% or 14/16), reported that their family member had been hospitalized prior to the relocation into residential care, making the hospital a pivotal setting within the Caregiver Journey experience. This phase reflects a growing awareness on the part of caregivers' of the growing frailty or declining health status of their family member. Marge, whose husband had relocated two years prior to the interview spoke about his changing care needs, and how they had increased over time, “The whole [thing] just sort of mushroomed out. He became weaker and weaker physically, and that's eventually why we had to institutionalize him, because he couldn't walk anymore and stuff like that.” Alongside the declining health status of their family member, caregivers reported becoming more aware of their own feelings of stress and burnout. While recognizing that family members' first wish was to return home, caregivers like Tina, whose spouse entered RC six months earlier, spoke about how it took some time to process what was happening, and from there, what their next steps should be: I had to sit down for a few days to tell myself- ‘weigh the pros and cons.’ and ask myself whether I honestly felt I could do it [continue to provide care at home], and I thought you know, I can't. It took me 34
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three social workers [laughing]. It was really something. Like two or three months only, and she had three.” When discussing her husband's care in light of the staff turnover, Moira noted, “…well it's a nurse practitioner, she's leaving at the end of the month and I don't know who's taking over…It's going to be like my third or fourth person in the last two years, you know?” Other system-related challenges experienced by caregivers included the nature and timing of service eligibility and needs assessments; the unexpected short stay user fees that were charged for staying in the hospital while awaiting transfer into RC; and the RC waitlist itself. In BC, RC facilities are in high demand and access is based predominantly on the client's needs and assessed level of urgency (British Columbia Ministry of Health [BCMOH], 2016). As a result, being placed on a waiting list is a common process as noted. More importantly, once a RC bed becomes available, policy dictates that families have only 48 h to accept or decline the bed.1 Caregivers' identified this time frame as being particularly challenging, sending some into a stress reaction. Rosanne, who had helped her mother to transition into RC five years earlier, described her reaction when she was notified:
Family caregivers also relied on their own informal networks (e.g., children, spouses or friends) when seeking information. Marge emphasized the role her children played in helping her manage her husband's relocation, “I've got four bright, bright kids and uh, they gave me all kinds of legal advice, medical advice, um, almost too much advice [laughs].” Pieta found that her friends were a key resource in helping her to gather information, “I have a lot of friends in healthcare, so I got a lot of really good information sort of under the- [gesture; hand under table] you know?” But, in the end, caregiver Paul, summed up the general information gathering process with a sentiment that seemed to be reflected across the majority of interviews, “It was rather a puzzle, wasn't it?” Advocacy While preparing to relocate their family member, most caregiver's also found themselves assuming an advocacy role. Caregivers spoke about the hard work they put into trying to ensure, support and maintain their family member's well-being and quality of life when making decisions related to their care preferences and needs. Many family caregivers expressed the view that their voices kept getting lost in system rules and restrictions. They noted how the different organizational and contextual realities of their caregiving circumstances (e.g., unsafe home environments, or having no other proximate family members available to help provide care) were not taken into account. On these occasions, caregivers described themselves as becoming more forceful and even “belligerent” in their advocacy roles; issuing formal complaints and writing letters. Amy recounted a particular experience she had when her mother was in the hospital prior to her transition into care in 2013:
… they said a bed became available [and] I thought-you're in panic mode. You can't think straight when you've got 48 hours to do everything. You can't. You cannot make a sound decision. I don't care who you are when it comes to that, unless you don't care about your loved one at all. ‘Let's get rid of them’, I know people like that too unfortunately, but uh, I don't want that for my mother. While caregivers understand the concept of the waitlist (e.g., the prioritization of higher-need clients and bed availability), the limited, and sometimes inconsistent, details that they received about their own family member's status, and the speed with which they must react caused tremendous stress and concern. Pieta described her experience when she phoned the health region to inquire about her father's waitlist status before his relocation into RC in 2014:
…then they said, um, ‘but we can't keep her here.’ And I said, ‘no, listen to me.’ I said, ‘you have to keep her here until I can make arrangements and I can do that, I can make arrangements, but you have to keep her here.’ And he said, ‘we can't.’ And I said, ‘no you have to listen to me. She can't go back as she is.’ I said, ‘there's nobody able to care for her there. She'd be unsafe in my house. I have stairs and she's blind in one eye. She's so unsteady, and she's so sick and she has Alzheimer's- she'd be unsafe.’
I phoned and said “you know, I'm wondering what's happening here. We were hoping that he would be moved.” … But they said “Well, there's one more person on the list ahead of him, then he can go.” But I said, “That doesn't make sense because a few months ago when I called, he was the next on the list.”
Other caregivers threatened to take their concerns public. Nicole described one specific experience in the hospital before her mother's transition into RC in 2012, “I said ‘I'm not packing her up. If you guys wanna move my mom, you come and pack her up. You move her, and I'll have the press here to watch you do it.’” Pieta also threatened to “go public” with her concerns when she was given misleading information about the timeframe for her father's relocation, “Well there have been some incidents in the newspaper lately, maybe this would be of interest to them as well.” Some caregivers described substantial unease about how they were reacting to the challenges they faced. Pieta said, “I don't ever like to be- you know, out of harmony with other people, but you know, certainly [I can] if I am being protective of someone I love”.
Caregivers often had a preferred RC facility in mind for their family member based on proximity to family, and other desired features. In many cases, family members were relocated to a facility that was not their first choice. To achieve the best outcome for their family member within the restrictive boundaries and regulations of the health care system, caregivers resorted to behaviours they likened to “playing the game.” For example, after turning down two facilities while navigating her mother's experience over the past five years, Nicole described her experience with the waitlist as follows: I got [understood] the system. See, you have to waitlist [wait on a waitlist] until you are given a bed. If it isn't the place where you want to be, you have to turn it down. You have to come off the waiting list [then] for 30 days, then you go back on it. I played that game and I have kept turning down these places.
Navigating the system: rules, regulations, and procedures In describing their experiences navigating the LTC environment, caregivers' routinely used the words “business” and “the system.” They expressed concern about what they perceived as a lack of “empathy”, “effort”, and “compassion” from care providers. Pieta highlighted this saying, “some people, they just go and do their job, and they really don't care, you know? And they shouldn't be there, really.” Caregivers also reported how ongoing staff changes (with case workers, case managers, social workers, nurse practitioners, and doctors) promoted a lack of continuity in the care received. This added another layer of complexity to the process of navigating their family member's care in what was for most, a foreign landscape. To illustrate, within a single hospital stay Annie described experiencing multiple social workers leading up to her mother's relocation into RC in 2014, “Lots of changing. I think she had
At the end of her interview, Sally reflected on her experience of navigating the care system: “Looking back on it, I would say if you know how to play the game, you can work through the system. If you don't know how to play the game, uh, it becomes very frustrating.”
1 In BC, access to RC facilities is governed by the provincial government's Ministry of Health's Residential Care Access Policy. In practice, this policy sets a process in place whereby seniors who are eligible for subsidized RC must accept the first appropriate bed they are offered, and must occupy that bed within 48 h of when it is offered (BCMOH, 2016).
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were leaving your kid at school. Do you know what I mean? And I thought, oh my God’ [gesture; drops head].” Some caregivers experienced frustration post-transition that they attributed to not fully understanding their family member's health trajectory. For example, the stages of dementia were highlighted as being particularly arduous:
Moving day When the physical relocation of their family member was imminent, caregivers discussed the transportation challenges associated with relocating from the hospital into the care facility, including having to hire community transportation services or asking other family members to help. Most caregivers spoke about the emotional challenges of moving day. Amy, who had helped move her mother make the transition into RC two years earlier, indicated that deciding which belongings to take, and which to leave behind was particularly difficult, “So, then I had to start talking about what- what we can't take. This was probably one of the hardest things I ever had to do.”
It's hard because she's in a wheelchair and can't do anything. She can't walk and it sucks. It sucks. I hate it. I hate that she has gone from this amazing, strong, independent woman to this lump kind of, you know? … So you know, it's just this- and then frustration with her lack of understanding- I didn't understand the dementia and I didn't understand the Alzheimer's… [Amelia]
Post-transition caregiving
Yet, after moving their family member into the RC facility, some caregivers expressed feelings of relief. Tina said, “So, once he was here, I was more relieved and I [knew] he was feeling more comfortable and because I could see him all day and every day and you know … I wasn't strained or tired.” Family caregivers also acknowledged a change in their relationship with their family members after the transition. Interestingly, those caring for a parent or sibling most often identified their relationship as having improved, while caregivers caring for a spouse focused on the change in how “close” they felt to their partners after the transition. For example, regarding her relationship with her husband, Marge revealed a positive view: “No, I think our relationship is probably stronger to be quite honest.”
Without exception, caregivers made it clear that they were still committed to providing care for their family member once they had relocated. Many noted that they weren't necessarily providing “less care,” it was just that the kind of care they were providing had changed. Caregivers focused on providing more emotional support and assistance with activities that were not part of the care provided by the facility post-transition. Most caregivers were also engaged in care management activities such as: maintaining their family members' finances (including completing their income tax returns), paying bills, and scheduling appointments (i.e., doctor, optometrist, and specialists). Caregivers also mentioned doing other personal-care tasks like putting cream on arms, cleaning dentures, helping with dressing, painting nails and maintaining wardrobes. In general, the tasks they focused on posttransition were likened to “overseeing” and “tweak[ing]” things. Marge noted the shift in her caregiving role for her husband:
Caregiver health and well-being As noted, most caregivers relied upon a wide range of formal supports (i.e., caregiving groups run through the health region or RC facility) and informal supports (i.e., family members, friends, church congregation, choir, and bowling). Caregivers themselves were often the driving force in dictating how, or if, resources were used:
Now, of course, the care home people are doing all the care. I'm just sort of the emotional- a bulwark of his existence now. I'm the familiarity of the past. But as far as physical care- I think I'm a lot of mental care, but no, no, there's no physical care going on.
I never thought I needed it, I was very- I've always been strong and mouthy and- ‘I don't need any of these kinds of things.’ Independent…but then all of a sudden you- you're not as tough as you think you are. Yeah, it's a bit of an eye opener. [Marge]
On the other hand, some caregivers described providing a higherlevel of care to their family members post-transition. Rebecca, whose husband had relocated to RC one year earlier, spoke about her new role as being particularly onerous: Seven days a week. Seven days a week I have a job. I'm 87 years old and I have a job to come here... You know, it takes more than a half hour to get here and um, being here, you know, helping with his food, you know, and I try to stay to the end.
Those who did use outside services and resources were most frequently involved in family council or caregiver support groups at the RC facilities. As noted, while the majority of those interviewed, experienced information gaps, Marge was unique in praising the efforts of the health region for making sure that her health and well-being were looked after in addition to her husband's:
All caregivers maintained a visible presence at the facility, with their number of visits per week ranging from three to seven. Caregivers caring for a spouse reported visiting more frequently than those caring for their mothers. Despite having helped her husband to make the transition two years earlier, Marge noted her daily visits were primarily to “maintain” their relationship:
So, that's where [the health region] went over and above. They certainly didn't have to introduce me, they had to look after my husband- but they were also a little concerned about me falling apart at the seams. This is where they introduced me to [the family council] and I found them very supportive too.
So yeah, I go every day. Not for any sort of um- because he needs somebody to keep an eye on him, that's not it at all. It's just- it's a nice little routine. It's like getting up and brushing your teeth in the morning, you know. And it's a good- a healthy thing for both of us I think.
In search of a new post-transition role, some family caregivers started pursuing other activities and interests like making jewellery or volunteering – things that they didn't have time to do before. Still, some caregivers found it difficult to adjust to the shift in their caregiving responsibilities and expressed feelings of loneliness. Marge reported: “I'm a gregarious person. I like to be out and about and I find loneliness is the thing that's bothering me the most about this business with my husband being away…Being here by myself- I mean it's beautiful, but you get bored with your own company.”
Post-transition emotions Helping family members to transition into RC was an emotionally daunting journey for many caregivers; with some noting the first few weeks of their spouse being away as the most difficult. Moira mentioned she would often find herself in tears, “Well, like I told you, in the very beginning, I'd spend my time like I still do and I'd come home - and the minute I'd come home I'd start crying.” Amelia noted: “[my] little heart would go ‘oh my God’ [gesture; clutching chest] almost like you
Bringing it all together Working inductively in undertaking the thematic analysis created an awareness of the transition from HC into RC as a process or a journey 36
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Fig. 1. The caregiver journey - a conceptual framework to depict the transition process from home care into residential care.
To assist family members through this phase, enhanced information and communication are deemed to be both desired and required in order to help them to understand why the healthcare system functions in certain ways, the range of care options that are available, and how to access them. At such times, formal health care providers are urged to help family members to understand some of the possibilities or turning points in the caregiving journey, and at which times certain decisions or actions may need to be taken. The policy of the first available RC bed was one juncture that placed family members in situations of tremendous stress; some of which may be ameliorated by helping them to know more about this policy and what they can expect. Repeating this message to family caregivers at different times may also be warranted. Several limitations to this research project must be noted. First, the smaller number of interviews prevented us from being able to draw any specific conclusions about the different ways in which geography (urban, suburban and rural) functions to challenge or support family caregivers making the HC to RC transition. In addition, it was notable that for many clients of LTC, this transition was only one in a larger series of movements through the broader healthcare system over time. For example, it was noteworthy that all of the care journeys featured in this analysis began with, and were also often interspersed with hospitalization(s) whether pre- or post-transition into RC. Further, although the initial research proposal was focused on being able to compare and contrast the transition experiences of those who made the move from HC into assisted living, and HC into RC, we were unable to recruit and interview any participants who had moved from AL into RC. This was in part due to the limited number of assisted living units in the health region. In addition, the original proposal was aimed at interviewing caregivers whose family member had moved into RC in the past six months. Ultimately, the majority of individuals in our sample had moved their family member into RC in a time frame that extended well beyond six months, with the majority having relocated between one to five years earlier. Therefore it is inevitable that recall bias has influenced these findings and resulted in some recollections being more muddled, with caregivers occasionally questioning their own accounts, and sometimes correcting themselves. In addition, this made it more challenging for the researchers to establish a clear, definitive timeline for mapping out each caregiver's transition experience. At the same time, it is possible that caregivers' had sufficient reflective time to offer a fuller, more objective perspective of their experience, and their most vivid experiences and challenges. Finally, caregivers who participated in this study
that could be depicted in three phases. Corresponding to the sections in this findings chapter, we labelled these three phases: Phase 1: Precursors to transition - recognizing frailty in family members and caregivers prior to transition; Phase 2: Preparing to transition into RC – a consideration of the various activities, and roles that family caregivers take on to prepare for the actual care transition including information gathering, advocacy and system navigation; and Phase 3: Post-transition: Finding a new balance - where the caregiver adjusts, adapts, and seeks to establish a new role between their old and new caregiving responsibilities. We then developed a conceptual framework (Fig. 1) to visually represent the caregiver journey experience as their family member makes the transition from HC into RC. Discussion and conclusions This research project began with an interest in understanding how caregivers help their family member to make the transition from being a home care client to living in a facility-based residential care setting where there needs are met on a 24-h, around the clock basis. A key outcome of this research was the depiction of the caregiver journey as a trajectory or process encompassing three phases (Fig. 1). This journey begins with caregivers' acceptance of their own, and their family member's increasing frailty. While declining health status was evident for those being cared for; in many instances, increasing frailty was also manifested in family caregivers through the high level of stress they were experiencing. As Mary graphically recounted, “I was at the end of my rope. I had tied the knot and I was hanging on by my teeth.” In the second phase of the caregiver journey, individuals occupied a place where caregivers and family members were engaged in negotiating the need for, and move into residential care. A third, and final phase involved the family caregiver working to shape and accept their new caregiving role with a different set of responsibilities related to the care of their family member. This research also highlighted how the second phase of the caregiver journey, that is, the navigational phase, was the one that was the most fraught with challenges and changes for the caregiver. In this phase, family members are depicted as being caught in a corkscrew of increased pressure where they must take on multiple roles including those of information seeker and conveyor, advocate, and chief navigator. In conceptualizing the journey as a process, key lessons were learned that highlighted junctures where challenges and complexity were more likely to arise. 37
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References
were all retired and therefore, our sample does not represent individuals sandwiched between the challenges created by the need to balance full- or part-time work, and the care of younger children with the care of older adults, which can be a common burden experienced by many family caregivers (Funk, 2012; Rosenthal et al., 2007). In any case, consistent with existing literature, these findings support the notion that family caregiving is a dynamic activity (Talley & Montgomery, 2013). In the larger quantitative study in which this research study was set (Authors, CIHR grant 122,184), the care transition was defined by a single date, or point in time when entry into RC occurred. However, in this study, our findings reveal that for families, the care transition itself is in reality an action that begins months, or sometimes years earlier, and that can extend well beyond the date of the actual move into RC as well. In other words, family caregivers provide care to their family member in the context of the HC to RC care transition as a process that evolves over variable periods of time, and through many dynamic processes. In the stories of these journeys, time and process were both fluid and variable depending on the family member's specific needs, caregiver capacities, and the local service context represented by existing services and facilities. This study broadens our understanding of how the LTC transition of moving from HC into RC is experienced and navigated by family caregivers. It underscores the importance of supporting family members by improved information and communication in general, and at critical junctures throughout the care journey. Family caregivers also need help with managing their expectations about how the health system operates (rules and regulations), and with what to expect about health declines in their family member over time as frailty increases. Corroborating the findings of other studies, this research also emphasizes the importance of considering family caregivers to be integral members of the overall care team (Dilworth-Anderson & Palmer, 2011). Future studies should explore the nature of caregiving and care transitions from more diverse gender, class, culture and geographical standpoints (Rosenthal et al., 2007). As demographic aging accelerates, this knowledge will be critical for supporting caregivers and care recipients in their varied journeys through the care environment.
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Author's contributions Hainstock, Cloutier and Penning oversaw the conceptualization, design, collection and interpretation of the research. Hainstock was responsible for data collection and drafting the manuscript. Cloutier and Penning contributed to manuscript revisions. All authors approved the final manuscript. We would also like to acknowledge the support of the Fraser Health region and the caregivers who participated in this research for their support.
Acknowledgements This work was supported by grants from the Canadian Institutes for Health Research (CIHR): Partnerships in Health System Improvement (PHSI) Grant Program, and the Michael Smith Foundation for Health Research (MSFHR) to Penning and Cloutier et al., 2012-2016 (CIHR #122184). In addition this project was supported by a University of Victoria Internal Research Grant/Creative Projects Grant Program. The research was carried out in partnership with the Fraser Health region (FH), Province of British Columbia. Their support and assistance is gratefully acknowledged as is that provided by the older adults, family members, practitioners, advocates and others who participated in the research. The interpretations expressed herein are those of the authors and do not necessarily represent those of the FH or other participants. We would also like to acknowledge the contribution of Ms. Kim Nuernberger for assistance with supportive data from the larger study within which this paper was developed.
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2016 in Canada. Statistics Canada catalogue no. 98-200-X2016004. Retrieved from http://www12.statcan.gc.ca/census-recensement/2016/as-sa/98-200-x/2016004/ 98-200-x2016004-eng.pdf. Talley, R. D., & Montgomery, R. J. (2013). Caregiving across the lifespan: Research practice and policy. New York, NY: Springer Publishing Company. Taylor, M. G., & Quesnel-Vallée, A. (2016). The structural burden of caregiving: Shared challenges in the United States and Canada. The Gerontologist, 57(1), 19–25. http:// dx.doi.org/10.1093/geront/gnw102. Turcotte, M., & Sawaya, C. (2015). Senior care: Differences by type of housing. Insights on Canadian Society (February). Statistics Canada catalogue no. 75-006-X. Retrieved from http://www.statcan.gc.ca/pub/75-006-x/2015001/article/14142-eng.pdf.
better. Victoria, BC: Office of the Seniors Advocate. Retrieved from https://www. seniorsadvocatebc.ca/app/uploads/sites/4/2015/09/PlacementReport.pdf. Rosenthal, C., Martin-Matthews, A., & Keefe, J. M. (2007). Care management and care provision for older relatives amongst employed informal care-givers. Ageing and Society, 27(05), 755–778. http://dx.doi.org/10.1017/S0144686X07005995. Sato, M., Shaffer, T., Arbaje, A. I., & Zuckerman, I. H. (2011). Residential and health care transition patterns among older medicare beneficiaries over time. The Gerontologist, 51(2), 170–178. http://dx.doi.org/10.1093/geront/gnq105. Sivanthan, S. N., Lavergne, M. R., & McGrail, K. (2015). Caring for dementia: A population-based study examining variations in guideline-consistent medical care. Alzheimer's & Dementia, 11(8), 905–916. Statistics Canada (2017). Census in brief: A portrait of the population aged 85 and older in
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Contents lists available at ScienceDirect
Journal of Aging Studies journal homepage: www.elsevier.com/locate/jaging
From home to ‘home’: Mapping the caregiver journey in the transition from home care into residential care
MARK
Taylor Hainstocka, Denise Cloutiera,b,⁎, Margaret Penninga,c a b c
Institute on Aging & Lifelong Health, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8P 2Y2, Canada Department of Geography, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada Department of Sociology, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada
A R T I C L E I N F O
A B S T R A C T
Keywords: Transition Home care Residential care Family caregivers Long-term care
Family caregivers play a pivotal role in supporting the functional independence and quality of life of older relatives, often taking on a wide variety of care-related activities over the course of their caregiving journey. These activities help family members to remain in the community and age-in-place for as long as possible. However, when needs exceed family capacities to provide care, the older family member may need to transition from one care environment to another (e.g., home care to nursing home care), or one level of care to another (from less intense to more intensive services). Drawing upon qualitative interview data collected in a populous health region in British Columbia, Canada, this study explores the roles and responsibilities of family caregivers for family members making the care transition from home care to residential care. A thematic analysis of the interview transcripts resulted in the development of a conceptual framework to characterize the “Caregiver Journey” as a process that could be divided into at least three phases: 1) Precursors to transition - recognizing frailty in family members and caregivers prior to transition; 2) Preparing to transition into residential nursing home care (RC) and 3) Posttransition: Finding a new balance - where caregivers adjust and adapt to new caregiving responsibilities. Our analyses revealed that the second phase is the most complex involving a consideration of the various activities, and roles that family caregivers take on to prepare for the care transition including: information gathering, advocacy and system navigation. We conclude that there is a need for family caregivers to be better supported during care transitions; notably through ongoing and enhanced investments in strategies to support caregiver communication and education.
Introduction Family caregivers play an instrumental role in supporting the functional independence and quality of life of family members as their health status declines, and their need for care and assistance increases (Gitlin & Wolff, 2011; Levine, Halper, Peist, & Gould, 2010). Some of the care specific activities that family members provide assistance with include help with eating, bathing, laundry, emotional support and companionship, as well as assistance with obtaining formal health and longterm care (LTC) services (Cranswick & Dosman, 2008; Gitlin & Wolff, 2011; Levine et al., 2010; Rosenthal, Martin-Matthews, & Keefe, 2007; Taylor & Quesnel-Vallée, 2016). Other activities family caregivers take on in the caregiver journey include help with tasks that extend beyond the provision of direct, “hands on” care, and into the realm of what might be labelled “care management.” Care management includes such tasks as information seeking, handling finances, doing relevant paperwork, and coordinating family support efforts (Rosenthal et al., 2007).
⁎
Current research suggests that around 5.4 million Canadians provide care to an older family member or friend (Turcotte & Sawaya, 2015). The real scope of caregiving however, is likely greater than what is reported, as caregivers' often underreport their caregiving activities. Moreover, the intensity of caregiving support is greatest for those living with a care recipient. Family caregiving for those living in facilities is also notably high in intensity, with 22% of those in this group indicating that they provide 10 or more hours of care a week (Turcotte & Sawaya, 2015). Generally speaking, family caregivers are seldom considered to be integral members of the ‘team’ within the long-term care (LTC) sector (Dilworth-Anderson & Palmer, 2011). As a consequence, limited attention has been paid to how these caregivers' manage a family member's transition from home care (HC) into a residential, nursing home (RC) care setting, despite this being one of the most common care trajectories experienced by clients (Cloutier & Penning, 2017). Care transitions can be defined as movements from one system of care to another, (e.g., home care to residential care, or one level of care to another) and arise in
Corresponding author at: Institute on Aging & Lifelong Health, University of Victoria, PO Box 1700 STN CSC, Victoria, BC V8P 2Y2, Canada. E-mail address: [email protected] (D. Cloutier).
http://dx.doi.org/10.1016/j.jaging.2017.09.003 Received 13 July 2017; Received in revised form 22 August 2017; Accepted 1 September 2017 0890-4065/ Crown Copyright © 2017 Published by Elsevier Inc. All rights reserved.
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health services such as respite, convalescent, and end of life care; and ultimately, may result in decreased quality of life for both the caregiver and care recipient (Health Council of Canada, 2012).
response to changes in health status, and when the need for additional care exceeds family caregiving resources and capacities (Callahan et al., 2012; Coleman & Boult, 2003). The formal LTC sector comprises a wide-range of publicly and privately funded services designed to address the health, social, and personal care needs of individuals who have lost some capacity for self-care (Federal/ Provincial/Territorial Subcommittee on Continuing Care, 1992). Although LTC occupies a pivotal place in the care continuum, as in other sectors, the supports and services that it provides have been heavily criticized as being fragmented, poorly coordinated, and difficult to access due to variability in provincial policies, funding levels, availability, and eligibility criteria (Chappell & Hollander, 2013; Havens, 1995). Research has shown that older adults are more vulnerable to negative outcomes during care transitions based on their increased frailty, and a lack of continuity in care between health sectors and systems (Dilworth-Anderson & Palmer, 2011). Some of these specific outcomes include: medication errors, poor compliance, inappropriate care and increased hospitalizations (Coleman, 2003; DilworthAnderson & Palmer, 2011; Sato, Shaffer, Arbaje, & Zuckerman, 2011). Care transitions mark significant changes in the lives of older adults, but can also have a significant impact on the lives of family caregivers, including family, friends, and neighbours who bear the lion's share of responsibility for facilitating these relocations (Coleman, Parry, Chalmers, & Min, 2006; Giosa, Stolee, Dupuis, Mock, & Santi, 2014; Moon, 2016). Forced to work largely on their own, within the boundaries of an unfamiliar health care system where eligibility criteria, financing standards, and policies determine the level of care their family member receives, caregivers routinely experience the stress that the transition into RC generates. (Afram, Verbeek, Bleijlevens, & Hamers, 2014; Ashbourne, 2015). This study explores the primary research question: How do family caregivers navigate and experience the transition from HC into RC for a family member?
Methods This study was conducted in a populous and diverse health region located in Western Canada. We stratified the region into three contiguous geographic sub-regions: urban, suburban, and rural based on a range of attributes, including population density and growth rates; number of health care providers per capita; number of hospitals, number of hospital and residential care beds; and nature of economic diversity and development. With lower population densities and fewer economic and health resources in rural communities, our expectations were that aspects of the family caregiver experience and journey would differ depending on where family members were located and receiving care. Sampling and data collection In this study, all caregivers were related by blood or marriage to the older adult who was making the transition from HC to RC. Health region representatives on the research team (Hainstock) facilitated initial contact with local RC facilities to support recruitment. These methods included flyer distribution and in-person efforts by the lead author through attendance at facility-hosted family information sessions. Family caregivers who self-identified as the primary person involved in the management of their family member's move from HC into RC in the past five years were recruited to participate. Ethical approval was obtained prior to conducting the interviews through the BC Ethics Harmonization Initiative, a joint process involving the University of Victoria and the health region in which the study took place. While the original goal was to generate a total sample of 30 caregivers, 10 in each type of geographical setting (urban, suburban and rural), recruitment proved more challenging given time and other pressures facing the existing workforce. In the end, a total of 15 one-onone, semi-structured interviews were undertaken between July 1st and November 30th, 2015. Fourteen interviews were held in the caregiver's home, and one was held in a private meeting room at the RC facility in which their family member received care. All family caregivers were still caring for family members at the time they were interviewed, although the move from HC into RC occurred anywhere from 13 months, to five or more years earlier. Interviews ranged from 45 to 150 min in length. Each interview was taped and transcribed. After each interview, field notes and journal entries were recorded. Seven of the 15 interviews were completed with urban, three with suburban, and five with rural caregivers. Nine interviews were conducted with daughters caring for an older parent (eight were caring for their mother, and one for their father), while five were conducted with a caregiving spouse or common-law partner. One interview took place with a husband and wife who provided care jointly to the wife's sister. In this case, both caregivers had equal opportunity to respond to the questions. This resulted in a final sample of 16 caregivers. All caregivers were assigned pseudonyms, and all interviews were matched with numeric identifier codes to protect anonymity and confidentiality for participants. Caregivers ranged in age from 46 to 87. Most were married (n = 9); four were single, two were divorced, and one was in a common-law relationship. The majority of those interviewed had some level of postsecondary education, with only two caregivers indicating high school as their highest level of education. Only two women were employed at the time of the interview, while 13 were retired, and one was unemployed. Caregivers lived between 1.4 km and 34.8 km from their family member's care facility. Family caregivers were asked questions in two key areas: about the kinds of care activities they had engaged in before, during and after the
The study context Aging trends and increased longevity are altering the demographic profile of many countries around the world. While the majority of older adults live independently in their own homes in the community, in Canada, as in other jurisdictions, age is associated with the increased likelihood of the need for formal LTC services (CIHI, 2011; Luppa et al., 2010; Sivanthan, Lavergne, & McGrail, 2015). Between 2011 and 2016, the number of people aged 85 and over grew by 19.4%, nearly four times the rate for the overall Canadian population (Statistics Canada, 2017). In the province of BC, where this research is set, LTC includes a broad continuum of home and community-based services, often called home care (HC), that includes home nursing and personal support work; assisted living (AL) that is, housing for semi-independent older adults; and residential care (RC) for those who need more intensive and supportive care on a continuous, 24-h basis. When an individual can no longer live safely or independently at home, due to substantial changes in medical and functional health, RC may be the only option. In BC, admission to RC requires contacting the local health authority and requesting a formal assessment by a case manager to determine eligibility. From there, individuals and families are asked to identify their top three RC facility choices based on needs, and are then placed on a waitlist until a suitable bed becomes available. According to a recent report by the Office of the Seniors Advocate for BC (2016), the demand for HC and RC services has been increasing, while the range and mix of these services has been shrinking. Alongside increased demand for LTC resources, there has been a corresponding increase in pressure on family caregivers due to the dynamics of increased divorce rates, decreased fertility rates, and greater geographic distances for family members to overcome in caring for their loved ones (Chappell, 2011). These challenges contribute to caregiver stress and burnout; place greater demands on specific kinds of 33
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a while and I- I felt guilty about it, you know? But I was- once I made that decision, I still felt guilty, but it was a decision I knew I had to make.
care transition; how they made sense of their caregiving roles and responsibilities; and their specific experiences in managing and navigating the move from HC into RC.
Sharon, who helped her mother to make the transition in 2014, expressed similar feelings, “…that was really tough for me to accept the fact that I had done all I had done for so long, and then had to ‘give in’ and take her up there [to the facility].”
Thematic analysis Qualitative data software (NVivo v.8) was used to organize and facilitate the thematic analysis for this research. Several strategies were applied to ensure study trustworthiness, an important criterion and measure of interpretive validity and worth (Baxter & Eyles, 1997). These strategies included triangulation based on the interviews, observations, literature sources, and field notes accumulated during the study (Altheide & Johnson, 1994; Lincoln & Guba, 1985). Memoing/ journaling and regular peer debriefing sessions occurred with research team members to further support trustworthiness. Thick descriptions of caregiver experiences were compiled and focused on rich and salient details, including gestures and body language, captured during the interviews. These details were retained in the transcripts for analytical purposes and to enhance interpretive validity and trustworthiness (Baxter & Eyles, 1997; Lincoln & Guba, 1985). Following the completion of data collection and transcription, interview summary sheets were developed which combined field notes and journal entries to capture the main ideas emerging from each interview (Miles & Huberman, 1994). These documents were reviewed extensively by Hainstock and shared with the research team. For each interview, a visual timeline was diagrammed to depict the chronology of the caregiving trajectory for each caregiver as a way of enriching and deepening the thematic analysis. Excerpts from transcripts were also coded and analysed thematically to identify, organize, and develop themes and patterns in the data (Braun & Clarke, 2012). At the end of this process and working inductively with the data, the research team developed a conceptual framework to depict the ‘Caregiver Journey’ highlighting the care transition from HC into RC as a process involving three key phases.
Preparing for the care transition After the decision to relocate into RC had been made, caregivers became focused on ensuring coordination and continuity of care for their family members. A series of new functions and roles were required including information seeking, advocating, and navigating the LTC system's rules, regulations, and procedures leading up to moving day. Mona emphasized the number of activities she has helped her sister with over the years, noting “I mean, there's so, so much. I could, you know, write a long list of all the things [laughing].” In general, family caregivers wanted to involve their family members as much as possible in the decision making related to care planning, but often, dementia status or stubborn personalities made it difficult. Mary mentioned, “I think one of the hardest things is–can be, convincing the ill person that they need to go into the care home.” Knowledge gaps and information seeking Upon entering the system, caregivers described feeling “naïve” and “unfamiliar” with the policies and protocols of LTC. For example, Amelia spoke about her experience (five years earlier), in the hospital leading up to the relocation of her mother: “…even if you ask questions and you get answers, it doesn't necessarily-like when you're actually there, right there, it's completely overwhelming.” She added, “…they hand you the pamphlet and you are distressed [and] you don't really read it, but you read what you want to see. You read what you believe is right for your mother.” Caregivers' also consistently underscored the importance of acquiring as much information as they could from both formal (e.g. social workers, case managers and other health professionals) and informal (e.g., friends and family) sources and support networks. Mona noted, “…it would have helped us a lot I think had there been more information available as to how to deal with this sort of…, this sort of process. Just, you know, the steps involved in getting there and what to look for.” Two of the caregivers who participated had healthcare backgrounds that helped them with navigational and information seeking tasks. However, those without such expertise found it challenging to acquire and understand the limited information that seemed available to them. Sharon explained her approach as being centered in self-teaching: “Um, you know I've just shopped. I've just gone around and figured out things, but I don't know how I've learned the system [laughs]. I don't think anyone's really taught me what the system is, I just sort of figured it all out.” In this information gathering phase, caregivers' relied on multiple sources of information to help make decisions about the transition into RC. Social workers stood out as particularly important resources. Those who experienced challenges in gathering information largely attributed their challenges to there being insufficient communication between themselves and the health care professionals. Tina spoke about one of the many home-to-hospital moves her partner had experienced prior to entering RC: “[I got] no information, not even about him being transferred [from hospital to RC]. Nothing. Um, that was the key. There was absolutely no information.” Communication between health care professionals across different care settings (e.g., family doctor, and the doctor on-call at the time of hospitalization) was also noted as being problematic and complicating information flows and related caregiving efforts.
Findings The findings are organized to address the six different themes, including three sub-themes that emerged from the data to address the research question: How do family caregivers navigate and make sense of the transition from home care (HC) into residential care (RC) for a family member? Increasing frailty For those making the transition from HC into RC, the vast majority of caregivers (87.5% or 14/16), reported that their family member had been hospitalized prior to the relocation into residential care, making the hospital a pivotal setting within the Caregiver Journey experience. This phase reflects a growing awareness on the part of caregivers' of the growing frailty or declining health status of their family member. Marge, whose husband had relocated two years prior to the interview spoke about his changing care needs, and how they had increased over time, “The whole [thing] just sort of mushroomed out. He became weaker and weaker physically, and that's eventually why we had to institutionalize him, because he couldn't walk anymore and stuff like that.” Alongside the declining health status of their family member, caregivers reported becoming more aware of their own feelings of stress and burnout. While recognizing that family members' first wish was to return home, caregivers like Tina, whose spouse entered RC six months earlier, spoke about how it took some time to process what was happening, and from there, what their next steps should be: I had to sit down for a few days to tell myself- ‘weigh the pros and cons.’ and ask myself whether I honestly felt I could do it [continue to provide care at home], and I thought you know, I can't. It took me 34
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three social workers [laughing]. It was really something. Like two or three months only, and she had three.” When discussing her husband's care in light of the staff turnover, Moira noted, “…well it's a nurse practitioner, she's leaving at the end of the month and I don't know who's taking over…It's going to be like my third or fourth person in the last two years, you know?” Other system-related challenges experienced by caregivers included the nature and timing of service eligibility and needs assessments; the unexpected short stay user fees that were charged for staying in the hospital while awaiting transfer into RC; and the RC waitlist itself. In BC, RC facilities are in high demand and access is based predominantly on the client's needs and assessed level of urgency (British Columbia Ministry of Health [BCMOH], 2016). As a result, being placed on a waiting list is a common process as noted. More importantly, once a RC bed becomes available, policy dictates that families have only 48 h to accept or decline the bed.1 Caregivers' identified this time frame as being particularly challenging, sending some into a stress reaction. Rosanne, who had helped her mother to transition into RC five years earlier, described her reaction when she was notified:
Family caregivers also relied on their own informal networks (e.g., children, spouses or friends) when seeking information. Marge emphasized the role her children played in helping her manage her husband's relocation, “I've got four bright, bright kids and uh, they gave me all kinds of legal advice, medical advice, um, almost too much advice [laughs].” Pieta found that her friends were a key resource in helping her to gather information, “I have a lot of friends in healthcare, so I got a lot of really good information sort of under the- [gesture; hand under table] you know?” But, in the end, caregiver Paul, summed up the general information gathering process with a sentiment that seemed to be reflected across the majority of interviews, “It was rather a puzzle, wasn't it?” Advocacy While preparing to relocate their family member, most caregiver's also found themselves assuming an advocacy role. Caregivers spoke about the hard work they put into trying to ensure, support and maintain their family member's well-being and quality of life when making decisions related to their care preferences and needs. Many family caregivers expressed the view that their voices kept getting lost in system rules and restrictions. They noted how the different organizational and contextual realities of their caregiving circumstances (e.g., unsafe home environments, or having no other proximate family members available to help provide care) were not taken into account. On these occasions, caregivers described themselves as becoming more forceful and even “belligerent” in their advocacy roles; issuing formal complaints and writing letters. Amy recounted a particular experience she had when her mother was in the hospital prior to her transition into care in 2013:
… they said a bed became available [and] I thought-you're in panic mode. You can't think straight when you've got 48 hours to do everything. You can't. You cannot make a sound decision. I don't care who you are when it comes to that, unless you don't care about your loved one at all. ‘Let's get rid of them’, I know people like that too unfortunately, but uh, I don't want that for my mother. While caregivers understand the concept of the waitlist (e.g., the prioritization of higher-need clients and bed availability), the limited, and sometimes inconsistent, details that they received about their own family member's status, and the speed with which they must react caused tremendous stress and concern. Pieta described her experience when she phoned the health region to inquire about her father's waitlist status before his relocation into RC in 2014:
…then they said, um, ‘but we can't keep her here.’ And I said, ‘no, listen to me.’ I said, ‘you have to keep her here until I can make arrangements and I can do that, I can make arrangements, but you have to keep her here.’ And he said, ‘we can't.’ And I said, ‘no you have to listen to me. She can't go back as she is.’ I said, ‘there's nobody able to care for her there. She'd be unsafe in my house. I have stairs and she's blind in one eye. She's so unsteady, and she's so sick and she has Alzheimer's- she'd be unsafe.’
I phoned and said “you know, I'm wondering what's happening here. We were hoping that he would be moved.” … But they said “Well, there's one more person on the list ahead of him, then he can go.” But I said, “That doesn't make sense because a few months ago when I called, he was the next on the list.”
Other caregivers threatened to take their concerns public. Nicole described one specific experience in the hospital before her mother's transition into RC in 2012, “I said ‘I'm not packing her up. If you guys wanna move my mom, you come and pack her up. You move her, and I'll have the press here to watch you do it.’” Pieta also threatened to “go public” with her concerns when she was given misleading information about the timeframe for her father's relocation, “Well there have been some incidents in the newspaper lately, maybe this would be of interest to them as well.” Some caregivers described substantial unease about how they were reacting to the challenges they faced. Pieta said, “I don't ever like to be- you know, out of harmony with other people, but you know, certainly [I can] if I am being protective of someone I love”.
Caregivers often had a preferred RC facility in mind for their family member based on proximity to family, and other desired features. In many cases, family members were relocated to a facility that was not their first choice. To achieve the best outcome for their family member within the restrictive boundaries and regulations of the health care system, caregivers resorted to behaviours they likened to “playing the game.” For example, after turning down two facilities while navigating her mother's experience over the past five years, Nicole described her experience with the waitlist as follows: I got [understood] the system. See, you have to waitlist [wait on a waitlist] until you are given a bed. If it isn't the place where you want to be, you have to turn it down. You have to come off the waiting list [then] for 30 days, then you go back on it. I played that game and I have kept turning down these places.
Navigating the system: rules, regulations, and procedures In describing their experiences navigating the LTC environment, caregivers' routinely used the words “business” and “the system.” They expressed concern about what they perceived as a lack of “empathy”, “effort”, and “compassion” from care providers. Pieta highlighted this saying, “some people, they just go and do their job, and they really don't care, you know? And they shouldn't be there, really.” Caregivers also reported how ongoing staff changes (with case workers, case managers, social workers, nurse practitioners, and doctors) promoted a lack of continuity in the care received. This added another layer of complexity to the process of navigating their family member's care in what was for most, a foreign landscape. To illustrate, within a single hospital stay Annie described experiencing multiple social workers leading up to her mother's relocation into RC in 2014, “Lots of changing. I think she had
At the end of her interview, Sally reflected on her experience of navigating the care system: “Looking back on it, I would say if you know how to play the game, you can work through the system. If you don't know how to play the game, uh, it becomes very frustrating.”
1 In BC, access to RC facilities is governed by the provincial government's Ministry of Health's Residential Care Access Policy. In practice, this policy sets a process in place whereby seniors who are eligible for subsidized RC must accept the first appropriate bed they are offered, and must occupy that bed within 48 h of when it is offered (BCMOH, 2016).
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were leaving your kid at school. Do you know what I mean? And I thought, oh my God’ [gesture; drops head].” Some caregivers experienced frustration post-transition that they attributed to not fully understanding their family member's health trajectory. For example, the stages of dementia were highlighted as being particularly arduous:
Moving day When the physical relocation of their family member was imminent, caregivers discussed the transportation challenges associated with relocating from the hospital into the care facility, including having to hire community transportation services or asking other family members to help. Most caregivers spoke about the emotional challenges of moving day. Amy, who had helped move her mother make the transition into RC two years earlier, indicated that deciding which belongings to take, and which to leave behind was particularly difficult, “So, then I had to start talking about what- what we can't take. This was probably one of the hardest things I ever had to do.”
It's hard because she's in a wheelchair and can't do anything. She can't walk and it sucks. It sucks. I hate it. I hate that she has gone from this amazing, strong, independent woman to this lump kind of, you know? … So you know, it's just this- and then frustration with her lack of understanding- I didn't understand the dementia and I didn't understand the Alzheimer's… [Amelia]
Post-transition caregiving
Yet, after moving their family member into the RC facility, some caregivers expressed feelings of relief. Tina said, “So, once he was here, I was more relieved and I [knew] he was feeling more comfortable and because I could see him all day and every day and you know … I wasn't strained or tired.” Family caregivers also acknowledged a change in their relationship with their family members after the transition. Interestingly, those caring for a parent or sibling most often identified their relationship as having improved, while caregivers caring for a spouse focused on the change in how “close” they felt to their partners after the transition. For example, regarding her relationship with her husband, Marge revealed a positive view: “No, I think our relationship is probably stronger to be quite honest.”
Without exception, caregivers made it clear that they were still committed to providing care for their family member once they had relocated. Many noted that they weren't necessarily providing “less care,” it was just that the kind of care they were providing had changed. Caregivers focused on providing more emotional support and assistance with activities that were not part of the care provided by the facility post-transition. Most caregivers were also engaged in care management activities such as: maintaining their family members' finances (including completing their income tax returns), paying bills, and scheduling appointments (i.e., doctor, optometrist, and specialists). Caregivers also mentioned doing other personal-care tasks like putting cream on arms, cleaning dentures, helping with dressing, painting nails and maintaining wardrobes. In general, the tasks they focused on posttransition were likened to “overseeing” and “tweak[ing]” things. Marge noted the shift in her caregiving role for her husband:
Caregiver health and well-being As noted, most caregivers relied upon a wide range of formal supports (i.e., caregiving groups run through the health region or RC facility) and informal supports (i.e., family members, friends, church congregation, choir, and bowling). Caregivers themselves were often the driving force in dictating how, or if, resources were used:
Now, of course, the care home people are doing all the care. I'm just sort of the emotional- a bulwark of his existence now. I'm the familiarity of the past. But as far as physical care- I think I'm a lot of mental care, but no, no, there's no physical care going on.
I never thought I needed it, I was very- I've always been strong and mouthy and- ‘I don't need any of these kinds of things.’ Independent…but then all of a sudden you- you're not as tough as you think you are. Yeah, it's a bit of an eye opener. [Marge]
On the other hand, some caregivers described providing a higherlevel of care to their family members post-transition. Rebecca, whose husband had relocated to RC one year earlier, spoke about her new role as being particularly onerous: Seven days a week. Seven days a week I have a job. I'm 87 years old and I have a job to come here... You know, it takes more than a half hour to get here and um, being here, you know, helping with his food, you know, and I try to stay to the end.
Those who did use outside services and resources were most frequently involved in family council or caregiver support groups at the RC facilities. As noted, while the majority of those interviewed, experienced information gaps, Marge was unique in praising the efforts of the health region for making sure that her health and well-being were looked after in addition to her husband's:
All caregivers maintained a visible presence at the facility, with their number of visits per week ranging from three to seven. Caregivers caring for a spouse reported visiting more frequently than those caring for their mothers. Despite having helped her husband to make the transition two years earlier, Marge noted her daily visits were primarily to “maintain” their relationship:
So, that's where [the health region] went over and above. They certainly didn't have to introduce me, they had to look after my husband- but they were also a little concerned about me falling apart at the seams. This is where they introduced me to [the family council] and I found them very supportive too.
So yeah, I go every day. Not for any sort of um- because he needs somebody to keep an eye on him, that's not it at all. It's just- it's a nice little routine. It's like getting up and brushing your teeth in the morning, you know. And it's a good- a healthy thing for both of us I think.
In search of a new post-transition role, some family caregivers started pursuing other activities and interests like making jewellery or volunteering – things that they didn't have time to do before. Still, some caregivers found it difficult to adjust to the shift in their caregiving responsibilities and expressed feelings of loneliness. Marge reported: “I'm a gregarious person. I like to be out and about and I find loneliness is the thing that's bothering me the most about this business with my husband being away…Being here by myself- I mean it's beautiful, but you get bored with your own company.”
Post-transition emotions Helping family members to transition into RC was an emotionally daunting journey for many caregivers; with some noting the first few weeks of their spouse being away as the most difficult. Moira mentioned she would often find herself in tears, “Well, like I told you, in the very beginning, I'd spend my time like I still do and I'd come home - and the minute I'd come home I'd start crying.” Amelia noted: “[my] little heart would go ‘oh my God’ [gesture; clutching chest] almost like you
Bringing it all together Working inductively in undertaking the thematic analysis created an awareness of the transition from HC into RC as a process or a journey 36
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Fig. 1. The caregiver journey - a conceptual framework to depict the transition process from home care into residential care.
To assist family members through this phase, enhanced information and communication are deemed to be both desired and required in order to help them to understand why the healthcare system functions in certain ways, the range of care options that are available, and how to access them. At such times, formal health care providers are urged to help family members to understand some of the possibilities or turning points in the caregiving journey, and at which times certain decisions or actions may need to be taken. The policy of the first available RC bed was one juncture that placed family members in situations of tremendous stress; some of which may be ameliorated by helping them to know more about this policy and what they can expect. Repeating this message to family caregivers at different times may also be warranted. Several limitations to this research project must be noted. First, the smaller number of interviews prevented us from being able to draw any specific conclusions about the different ways in which geography (urban, suburban and rural) functions to challenge or support family caregivers making the HC to RC transition. In addition, it was notable that for many clients of LTC, this transition was only one in a larger series of movements through the broader healthcare system over time. For example, it was noteworthy that all of the care journeys featured in this analysis began with, and were also often interspersed with hospitalization(s) whether pre- or post-transition into RC. Further, although the initial research proposal was focused on being able to compare and contrast the transition experiences of those who made the move from HC into assisted living, and HC into RC, we were unable to recruit and interview any participants who had moved from AL into RC. This was in part due to the limited number of assisted living units in the health region. In addition, the original proposal was aimed at interviewing caregivers whose family member had moved into RC in the past six months. Ultimately, the majority of individuals in our sample had moved their family member into RC in a time frame that extended well beyond six months, with the majority having relocated between one to five years earlier. Therefore it is inevitable that recall bias has influenced these findings and resulted in some recollections being more muddled, with caregivers occasionally questioning their own accounts, and sometimes correcting themselves. In addition, this made it more challenging for the researchers to establish a clear, definitive timeline for mapping out each caregiver's transition experience. At the same time, it is possible that caregivers' had sufficient reflective time to offer a fuller, more objective perspective of their experience, and their most vivid experiences and challenges. Finally, caregivers who participated in this study
that could be depicted in three phases. Corresponding to the sections in this findings chapter, we labelled these three phases: Phase 1: Precursors to transition - recognizing frailty in family members and caregivers prior to transition; Phase 2: Preparing to transition into RC – a consideration of the various activities, and roles that family caregivers take on to prepare for the actual care transition including information gathering, advocacy and system navigation; and Phase 3: Post-transition: Finding a new balance - where the caregiver adjusts, adapts, and seeks to establish a new role between their old and new caregiving responsibilities. We then developed a conceptual framework (Fig. 1) to visually represent the caregiver journey experience as their family member makes the transition from HC into RC. Discussion and conclusions This research project began with an interest in understanding how caregivers help their family member to make the transition from being a home care client to living in a facility-based residential care setting where there needs are met on a 24-h, around the clock basis. A key outcome of this research was the depiction of the caregiver journey as a trajectory or process encompassing three phases (Fig. 1). This journey begins with caregivers' acceptance of their own, and their family member's increasing frailty. While declining health status was evident for those being cared for; in many instances, increasing frailty was also manifested in family caregivers through the high level of stress they were experiencing. As Mary graphically recounted, “I was at the end of my rope. I had tied the knot and I was hanging on by my teeth.” In the second phase of the caregiver journey, individuals occupied a place where caregivers and family members were engaged in negotiating the need for, and move into residential care. A third, and final phase involved the family caregiver working to shape and accept their new caregiving role with a different set of responsibilities related to the care of their family member. This research also highlighted how the second phase of the caregiver journey, that is, the navigational phase, was the one that was the most fraught with challenges and changes for the caregiver. In this phase, family members are depicted as being caught in a corkscrew of increased pressure where they must take on multiple roles including those of information seeker and conveyor, advocate, and chief navigator. In conceptualizing the journey as a process, key lessons were learned that highlighted junctures where challenges and complexity were more likely to arise. 37
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References
were all retired and therefore, our sample does not represent individuals sandwiched between the challenges created by the need to balance full- or part-time work, and the care of younger children with the care of older adults, which can be a common burden experienced by many family caregivers (Funk, 2012; Rosenthal et al., 2007). In any case, consistent with existing literature, these findings support the notion that family caregiving is a dynamic activity (Talley & Montgomery, 2013). In the larger quantitative study in which this research study was set (Authors, CIHR grant 122,184), the care transition was defined by a single date, or point in time when entry into RC occurred. However, in this study, our findings reveal that for families, the care transition itself is in reality an action that begins months, or sometimes years earlier, and that can extend well beyond the date of the actual move into RC as well. In other words, family caregivers provide care to their family member in the context of the HC to RC care transition as a process that evolves over variable periods of time, and through many dynamic processes. In the stories of these journeys, time and process were both fluid and variable depending on the family member's specific needs, caregiver capacities, and the local service context represented by existing services and facilities. This study broadens our understanding of how the LTC transition of moving from HC into RC is experienced and navigated by family caregivers. It underscores the importance of supporting family members by improved information and communication in general, and at critical junctures throughout the care journey. Family caregivers also need help with managing their expectations about how the health system operates (rules and regulations), and with what to expect about health declines in their family member over time as frailty increases. Corroborating the findings of other studies, this research also emphasizes the importance of considering family caregivers to be integral members of the overall care team (Dilworth-Anderson & Palmer, 2011). Future studies should explore the nature of caregiving and care transitions from more diverse gender, class, culture and geographical standpoints (Rosenthal et al., 2007). As demographic aging accelerates, this knowledge will be critical for supporting caregivers and care recipients in their varied journeys through the care environment.
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Author's contributions Hainstock, Cloutier and Penning oversaw the conceptualization, design, collection and interpretation of the research. Hainstock was responsible for data collection and drafting the manuscript. Cloutier and Penning contributed to manuscript revisions. All authors approved the final manuscript. We would also like to acknowledge the support of the Fraser Health region and the caregivers who participated in this research for their support.
Acknowledgements This work was supported by grants from the Canadian Institutes for Health Research (CIHR): Partnerships in Health System Improvement (PHSI) Grant Program, and the Michael Smith Foundation for Health Research (MSFHR) to Penning and Cloutier et al., 2012-2016 (CIHR #122184). In addition this project was supported by a University of Victoria Internal Research Grant/Creative Projects Grant Program. The research was carried out in partnership with the Fraser Health region (FH), Province of British Columbia. Their support and assistance is gratefully acknowledged as is that provided by the older adults, family members, practitioners, advocates and others who participated in the research. The interpretations expressed herein are those of the authors and do not necessarily represent those of the FH or other participants. We would also like to acknowledge the contribution of Ms. Kim Nuernberger for assistance with supportive data from the larger study within which this paper was developed.
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