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Research Paper
Purpose: Family caregivers provide essential support as stroke Implications for Rehabilitation
survivors’ return to community living, but it is not standard
clinical practice to prepare or provide ongoing support for their • Caregivers support needs change across the care
care-giving role. In addition, health care professionals (HCPs) continuum
experiences with providing support to caregivers have not been • Support programs should be offered outside usual
explored previously. The objectives of this qualitative study were working hours
to: (1) explore the support needs over time from the perspective • Health care professionals should address the needs of
of caregivers, (2) explore the support needs over time from the the stroke survivor and their family caregiver
perspective of HCPs, and (3) compare and contrast caregivers’ • Caregivers benefit from receiving support from health
and HCPs’ perspectives. Methods: A qualitative study with stroke care professionals, family, friends, and care-giving
family caregivers (n = 24) and HCPs (n = 14). In-depth interviews peers
were audio taped, transcribed, and analyzed using Framework
Analysis. Results: Three main themes emerged concerning: making stroke survivors’ community care needs a priority [2].
(1) types and intensity of support needed; (2) who provides Family caregivers are an essential source of support for stroke
support and the method of providing support; and (3) primary survivors residing in the community. Unfortunately, caregiv-
focus of care. These themes are discussed in relation to the TIR ers rarely receive preparation to support stroke survivors’
framework. Conclusions: Caregivers’ needs for support and the transition home and, as a result, they commonly experience
individuals most suited to providing support change across poor mental and physical health [3–5].
the stroke survivor’s recovery trajectory. Changes to service Previous research has begun to delineate the needs
delivery to better support caregivers may include: (1) addressing of caregivers to stroke survivors to inform intervention
caregivers’ changing needs across the care continuum; (2) strategies. To date, this research has described the personal
implementing a family-centered model of care; and (3) providing toll providing care has on caregivers’ health, well-being and
7-day per week inpatient rehabilitation. personal lifestyle [6–8]. Studies have also begun to identify
caregivers’ needs for assistance to manage the uncertainty
Keywords: Caregiver, stroke, social support, education, health surrounding stroke recovery, their new responsibilities,
service delivery stroke survivor physical, cognitive, and emotional difficulties,
dependency, and balancing care-giving with other life
activities [8–10]. Some research has taken this a step further by
Introduction
trying to delineate changes in caregivers’ needs across the care
Stroke is a leading cause of adult disability [1]. An estimated trajectory [9,11,12]. Specifically, early in the care trajectory,
78% of stroke survivors return home after their acute hospital- caregivers need to understand stroke and its consequences
ization (55%) or after receiving inpatient rehabilitation (23%) and to receive training to help them manage the physical
Correspondence: Jill I. Cameron, PhD, University of Toronto, Occupational Science and Occupational Therapy, 160-500 University Avenue, Toronto,
Ontario, M5G 1V7 Canada. Tel: 416-978-2041. Fax: 416-946-8570. E-mail: jill.cameron@utoronto.ca
(Accepted May 2012)
315
316 J. I. Cameron et al.
challenges of providing care [9,11,12]. Once the stroke and the support they typically provide has not been explored.
survivor returns to the home environment, caregivers need Therefore, the specific objectives of this qualitative study were
more support from community services including someone to to: (1) explore the support needs over time from the perspec-
check in to see how they are managing [9,12]. Over the longer tive of caregivers, (2) explore the support needs over time
term, caregivers realize the unrelenting nature of providing from the perspective of HCPs, and (3) compare and contrast
care, and, therefore, discussed the need for ongoing support caregivers’ and HCPs’ perspectives.
[12]. As suggested by Greenwood et al. in their review, future
research in this area needs to continue to clarify the specific
Methods
timing of caregivers’ experiences and needs to better inform
changes to health care delivery and development of time Design
sensitive education and support interventions [13]. Qualitative methods are beneficial when the objective is to
The Timing it Right (TIR) framework can be used to obtain an in-depth understanding of individual experiences
explore the timing of caregivers’ support needs as they tran- and needs [17]. We used framework methodology as it supports
sition with stroke survivors across care environments. The the use of an existing conceptual model or framework to guide
framework was developed through a conceptual review of research including data collection and analysis [18,19]. It allows
the literature to increase our understanding of how needs for key themes to emerge and for the framework to be applied to
support change across care environments [14]. Specifically, the themes. Specifically, in our study we wanted to explore how
literature describing family caregivers’ support needs that also the themes were influenced by time or phase of care.
specified when in the illness and recovery trajectory the needs
occurred informed the description of the support needs for Participants
each phase of the framework. It has been adapted and used Caregivers were defined as family members or friends centrally
to explore the changing experiences and needs of survivors involved in providing and/or coordinating the stroke survivor’s
of acute respiratory distress syndrome [15]. The framework care without financial compensation. Caregivers had to be 18
and the qualitative data presented in this paper have informed years of age or older and be able to participate in a structured,
the development of a stroke family education and support qualitative interview in English. Caregivers were purposively
program that is currently being evaluated in a randomized sampled from three sources to maximize the variation in our
controlled trial (Clinicaltrials.gov NCT00958607). sample: (1) an inpatient rehabilitation center; (2) a community-
TIR defines five phases that correspond to a stroke survi- based aphasia program and (3) a community care organization
vor’s recovery trajectory: (1) admission to acute care (event/ serving a rural population. By selecting respondents from inpa-
diagnosis); (2) patient’s medical stabilization (stabilization); tient and community programs, caregivers at different phases
(3) preparation for discharge home (preparation); (4) first of their experience (e.g. ranging from 1 month to >1 year post-
few months adjusting to living at home (implementation), stroke) were interviewed. This was advantageous because we
and (5) longer-term adjustment to community living (adap- did not have to rely on long periods of recall for all participants
tation [14]). Each phase of the framework emphasizes care- when discussing the early phases of their care-giving experi-
givers’ needs for informational, emotional, and instrumental ences. A breadth of care-giving experiences was obtained by
(e.g. tangible assistance from other individuals including including individuals caring for stroke survivors with physical,
HCPs providing training in care-giving tasks) supports [16]. cognitive, and communication deficits from both urban and
The framework acknowledges different sources of support rural living environments. Members of the health care teams
including HCPs, family and friends. Using this framework to introduced caregivers to the study and referred interested care-
develop caregiver support programs may address caregivers’ givers to the research team who explained the study, obtained
phase-specific needs, enhance preparedness, ease transitions, written consent, and conducted the interview.
and minimize negative outcomes (e.g. depression [14]). HCPs whose primary clinical responsibility was stroke
To date, research with stroke family caregivers suggests care including rehabilitation professionals, nurses, and
that providing care can have a negative impact on caregivers’ social workers were interviewed. They were recruited from
health and well-being and caregivers need more support than the same sources as the family caregivers with the addition
they are currently receiving from the health and social care of an acute care hospital and a home care service provider.
systems [3–12]. Although recommendations have been made HCPs received a study information email from their program
to understand how caregivers’ experiences and needs change manager. Interested HCPs contacted members of the research
during a patient’s recovery trajectory to inform timely educa- team who explained the study, obtained written consent, and
tion and support programs [13], few studies have begun to conducted the interview. Institutional research ethics boards
explore caregivers’ changing needs for support. Therefore, this approved the study protocol.
study aimed to address this gap in the literature. Specifically,
the goal of this qualitative study was to determine the sup- Data collection
port needs of caregivers, the extent to which these needs Caregivers and HCPs each participated in one interview either
change over time, how they change, and who provides sup- in-person or by telephone depending on participant preference
port using the TIR framework as a conceptual guide. HCPs [20,21]. Caregivers were asked to discuss their personal needs
are key providers of information and support to caregivers, for emotional, informational, and instrumental (e.g. caregiver
but, to date, their perspectives on caregivers’ support needs training and hands on assistance) support at different times
Emotionally, caregivers’ discussed being stressed by the “I’ve often said... if I was the disabled one at home and my husband
stroke experience and, therefore, needed to feel cared for by was working, I would probably be able to get someone to come and
others (see Table IV). This experience was most pronounced help clean the house. People have told me it’s available. If you’re a
during the event/diagnosis, stabilization, and implementation woman they come and do it all because you’re disabled. But because
phases. During the preparation phase, caregivers discussed he’s a man at home and I’m still capable of doing things, I get no help
with the house. And that would be such a help… you know… I bring
being more relaxed and excited to bring the stroke survivor in the wood for the fireplace. I look after the garbage, I look after the
home. Caregiver stress often returned once they began to recycling, I clean the house… I take care of his needs – I take him to
experience some of the challenges of providing care in the appointments and I work. And I’m exhausted. I don’t sleep. It’s very,
home. During the adaption phase, caregivers were generally very hard.” (C5)
feeling better.
Most HCPs based in acute hospitals or rehabilitation facili- Needs for training in the care-giving role were discussed
ties felt that caregivers needed information about the status of primarily during the preparation and implementation phases.
the stroke survivor and treatment options to put their mind Neither caregivers nor HCPs discussed any training needs
at ease. Caregivers did not discuss the provision of informa- during the event/diagnosis phase. During the stabilization
tion by HCPs as contributing to their emotional well-being. phase, a few caregivers, who more regularly attended the
HCPs also felt that social workers were providing emotional hospital, received some training to support activities of daily
Table IV. Summary of support needed, source and method of providing support, and the primary focus of care by phase of the Timing it
Right Framework.
Phase Support needed Source of support and type provided Focus and goal of care
Event/diagnosis - Information: diagnostic testing, treatment, -H CP: information & instrumental support - Patient care and recovery
medications -F /F: emotional & instrumental support
- Emotional: sense of being cared for
- Instrumental: comforts (e.g. blanket),
completion of forms, companionship, parking,
accommodations, help at home
- Training: none
Stabilization - Information: what is a stroke, medical status, -H CP: information & instrumental support - Patient care and recovery
expected recovery, rehabilitation eligibility and -F /F: emotional & instrumental support
options, care processes, roles of HCPs
- Emotional: sense of being cared for
- Instrumental: comforts, completion of forms,
companionship, parking, accommodations, help
at home, transfers between hospitals, arranging
rehabilitation
- Training: support ADL in hospital
Preparation - Information: care plan, rehabilitation goals and -P eers: information (practical guidance for - Patient rehabilitation needs
intensity, home care services, secondary preven- caring in the home)
tion, navigating the health care system -F /F: instrumental (home preparation)
- Emotional: more relaxed and optimistic -H CPs: information, instrumental, training - Family transition information
(e.g. home care services)
- Instrumental: participate in rehabilitation ses- - HCP try to engage family
sions, discharge planning, disability insurance (e.g. family meetings, involve
application, community care service planning, in rehabilitation therapy)
accessing ongoing rehabilitation, ensuring home
safety, coordination of follow-up appointments,
someone asking how caregiver is doing
- Training: mobility, transfers, medical care at
home, rehabilitation exercises, how to provide
care in the home, how to manage behavior
changes and depression, weekend visits (passes)
Implementation - Information: secondary prevention, where to go - Peers: information (practical guidance), -H ome care services planned
with questions, how to care and support rehabili- emotional based on patients preferences
tation at home, realistic expectations regarding - HCP: instrumental, information, appraisal and needs
outpatient therapy and recovery, community - F/F: instrumental (help around the home,
reintegration, community-based programs/ food, assist with care provision)
services to support caregiver
living (ADLs) but this training was not routine (see quotation current treatment, and future care needs. Caregivers discussed
below). During the preparation phase, caregivers received being overwhelmed by the large amounts of medical infor-
some training to support ADLs and rehabilitation therapy, but mation being provided and did not feel that they had ample
felt that these needs were only “somewhat met”. HCPs tended opportunities to ask questions during or after the meeting.
to focus more on providing information and less on actual HCPs struggled to determine when caregivers were ready
training activities, but did encourage caregivers to observe to receive information. A few HCPs tried to take a proactive
therapy sessions. Caregivers’ greatest training needs occurred approach by providing information before needs occurred,
during the implementation phase where they indicated that but most felt that information was provided only after care-
these needs were not being met. Caregivers also needed, but givers appeared to be stressed. Caregivers preferred to receive
few received, feedback during the implementation phase information verbally followed by written material to review
about what they were or were not doing correctly. The train- at a later date. They were most receptive to written informa-
ing needs that persisted into the adaptation phase concerned tion in the preparation and implementation phases and found
aspects of stroke chronicity (e.g. communication difficulties). information books overwhelming during the event/diagnosis
The following is a quotation from an adult daughter caregiver or stabilization phases. The following quotation depicts one
who regularly visited the care facility and did receive some daughter caregiver’s positive experience with receiving verbal
training during the stabilization phase: and written information during the preparation phase:
“Then, only a couple of days ago, a nurse just happened to be there when “But the fact that she, instead of just handing me information, she sat
my Mom was getting out of bed. So she showed me the easier way for down and went through each point even though I was so tired and I’m
my mother to get out of bed. And just yesterday, the easier way to get going to remember it so much more. When I need to, I’ll know in the
her out of the wheelchair… so I would have appreciated knowing all sheets that she gave me where to go to look for the information.” (C9)
that, at the beginning. Like if somebody – because I spend a lot of time
here – if somebody had taken the trouble to say, “Look, we can see that Overall caregivers reported receiving the least amount of
you’re helping your Mom. This is like the basic things that she’s doing on
a regular basis during the day, this is how to do them.” I think it would information from HCPs once the stroke survivor returned to
have definitely benefited me and my Mother… because I would have the community. Caregivers discussed needing the inpatient
been doing the things.” (C9) HCPs, who were familiar with the stroke survivor, to call them
to see how things were going and provide any needed advice
or support. HCPs from inpatient rehabilitation also discussed
Theme 2: Who Provides Support and the Method of the possibility of offering this type of outreach program. For
Providing Support example, the following quotations from a daughter caregiver
Caregivers received support from primarily three sources: and rehabilitation-based HCP highlight their thoughts about
(1) HCPs, (2) family members and friends, and (3) peers (i.e. the lack of follow-up during the implementation phase:
individuals caring for family members who had experienced
a stroke). Each group provided different types of support at “They cast us adrift, you’re into the community and you’re on your own.
different times and used different approaches (see Table IV). I would have – you know how they have – when you’re a new mother
and you get home, you have a hospital calling to check in on you and
HCPs were a key source of information during the inpatient to see how you’re doing and that type of stuff. I would have loved some-
phases. HCPs provided information to caregivers individually thing like that”. (C4)
because they felt that information was discipline-specific.
“We don’t actually get to follow-up and find out [how they are managing
Caregivers stated a preference for a more coordinated approach at home] because we have such a high case load… It’s very infrequent
where one individual obtained information from HCPs and that we would call a patient because we leave it up to the patient and
then shared this information with the family. HCPs used family their family, which may be the wrong thing but just time wise we can’t
meetings to provide an update on the stroke survivor’s status, actually be doing that.” (HCP14)