Disability & Rehabilitation, 2013; 35(4): 315–324

© 2013 Informa UK, Ltd.

ISSN 0963-8288 print/ISSN 1464-5165 online
DOI: 10.3109/09638288.2012.691937

Research Paper

 troke family caregivers’ support needs change across the care

S
continuum: a qualitative study using the timing it right framework

Jill I. Cameron1,2, Gary Naglie2,3,4,5, Frank L. Silver6, and Monique A. M. Gignac7,8

1
Department of Occupational Sciences and Occupational Therapy, University of Toronto, Toronto, Canada, 2Research Department,
Toronto Rehabilitation Institute, Toronto, Canada, and 3Department of Medicine and Rotman Research Institute, Baycrest Geriatric
Health Care System, Toronto, Canada, 4Western Hospital Department of Medicine, 5Western Hospital Department of Health Policy,
Management and Evaluation, 6Division of Neurology, University Health Network, Toronto, 7Dalla Lana School of Public Health,
University of Toronto, Toronto, Canada, and 8Health Care & Outcomes Research, University Health Network, Toronto, Canada

Purpose: Family caregivers provide essential support as stroke
survivors’ return to community living, but it is not standard
clinical practice to prepare or provide ongoing support for their
care-giving role. In addition, health care professionals (HCPs)
experiences with providing support to caregivers have not been
explored previously. The objectives of this qualitative study were
to: (1) explore the support needs over time from the perspective
of caregivers, (2) explore the support needs over time from the
perspective of HCPs, and (3) compare and contrast caregivers’
and HCPs’ perspectives. Methods: A qualitative study with stroke
family caregivers (n = 24) and HCPs (n = 14). In-depth interviews
were audio taped, transcribed, and analyzed using Framework
Analysis. Results: Three main themes emerged concerning:
(1) types and intensity of support needed; (2) who provides
support and the method of providing support; and (3) primary
focus of care. These themes are discussed in relation to the TIR
framework. Conclusions: Caregivers’ needs for support and the
individuals most suited to providing support change across
the stroke survivor’s recovery trajectory. Changes to service
delivery to better support caregivers may include: (1) addressing
caregivers’ changing needs across the care continuum; (2)
implementing a family-centered model of care; and (3) providing
7-day per week inpatient rehabilitation.
Keywords:  Caregiver, stroke, social support, education, health
service delivery
Introduction
Stroke is a leading cause of adult disability [1]. An estimated
78% of stroke survivors return home after their acute hospital-
ization (55%) or after receiving inpatient rehabilitation (23%)
Implications for Rehabilitation
• Caregivers support needs change across the care
continuum
• Support programs should be offered outside usual
working hours
• Health care professionals should address the needs of
the stroke survivor and their family caregiver
• Caregivers benefit from receiving support from health
care professionals, family, friends, and care-giving
peers
making stroke survivors’ community care needs a priority [2].
Family caregivers are an essential source of support for stroke
survivors residing in the community. Unfortunately, caregiv-
ers rarely receive preparation to support stroke survivors’
transition home and, as a result, they commonly experience
poor mental and physical health [3–5].
Previous research has begun to delineate the needs
of caregivers to stroke survivors to inform intervention
strategies. To date, this research has described the personal
toll providing care has on caregivers’ health, well-being and
personal lifestyle [6–8]. Studies have also begun to identify
caregivers’ needs for assistance to manage the uncertainty
surrounding stroke recovery, their new responsibilities,
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
trying to delineate changes in caregivers’ needs across the care
trajectory [9,11,12]. Specifically, early in the care trajectory,
caregivers need to understand stroke and its consequences
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
survivor returns to the home environment, caregivers need
more support from community services including someone to
check in to see how they are managing [9,12]. Over the longer
term, caregivers realize the unrelenting nature of providing
care, and, therefore, discussed the need for ongoing support
[12]. As suggested by Greenwood et al. in their review, future
research in this area needs to continue to clarify the specific
timing of caregivers’ experiences and needs to better inform
changes to health care delivery and development of time
sensitive education and support interventions [13].
The Timing it Right (TIR) framework can be used to
explore the timing of caregivers’ support needs as they tran-
sition with stroke survivors across care environments. The
framework was developed through a conceptual review of
the literature to increase our understanding of how needs for
support change across care environments [14]. Specifically,
literature describing family caregivers’ support needs that also
specified when in the illness and recovery trajectory the needs
occurred informed the description of the support needs for
each phase of the framework. It has been adapted and used
to explore the changing experiences and needs of survivors
of acute respiratory distress syndrome [15]. The framework
and the qualitative data presented in this paper have informed
the development of a stroke family education and support
program that is currently being evaluated in a randomized
controlled trial (Clinicaltrials.gov NCT00958607).
TIR defines five phases that correspond to a stroke survi-
vor’s recovery trajectory: (1) admission to acute care (event/
diagnosis); (2) patient’s medical stabilization (stabilization);
(3) preparation for discharge home (preparation); (4) first
few months adjusting to living at home (implementation),
and (5) longer-term adjustment to community living (adap-
tation [14]). Each phase of the framework emphasizes care-
givers’ needs for informational, emotional, and instrumental
(e.g. tangible assistance from other individuals including
HCPs providing training in care-giving tasks) supports [16].
The framework acknowledges different sources of support
including HCPs, family and friends. Using this framework to
develop caregiver support programs may address caregivers’
phase-specific needs, enhance preparedness, ease transitions,
and minimize negative outcomes (e.g. depression [14]).
To date, research with stroke family caregivers suggests
that providing care can have a negative impact on caregivers’
health and well-being and caregivers need more support than
they are currently receiving from the health and social care
systems [3–12]. Although recommendations have been made
to understand how caregivers’ experiences and needs change
during a patient’s recovery trajectory to inform timely educa-
tion and support programs [13], few studies have begun to
explore caregivers’ changing needs for support. Therefore, this
study aimed to address this gap in the literature. Specifically,
the goal of this qualitative study was to determine the sup-
port needs of caregivers, the extent to which these needs
change over time, how they change, and who provides sup-
port using the TIR framework as a conceptual guide. HCPs
are key providers of information and support to caregivers,
but, to date, their perspectives on caregivers’ support needs
Disability & Rehabilitation
and the support they typically provide has not been explored.
Therefore, the specific objectives of this qualitative study were
to: (1) explore the support needs over time from the perspec-
tive of caregivers, (2) explore the support needs over time
from the perspective of HCPs, and (3) compare and contrast
caregivers’ and HCPs’ perspectives.
Methods
Design
Qualitative methods are beneficial when the objective is to
obtain an in-depth understanding of individual experiences
and needs [17]. We used framework methodology as it supports
the use of an existing conceptual model or framework to guide
research including data collection and analysis [18,19]. It allows
key themes to emerge and for the framework to be applied to
the themes. Specifically, in our study we wanted to explore how
the themes were influenced by time or phase of care.
Participants
Caregivers were defined as family members or friends centrally
involved in providing and/or coordinating the stroke survivor’s
care without financial compensation. Caregivers had to be 18
years of age or older and be able to participate in a structured,
qualitative interview in English. Caregivers were purposively
sampled from three sources to maximize the variation in our
sample: (1) an inpatient rehabilitation center; (2) a community-
based aphasia program and (3) a community care organization
serving a rural population. By selecting respondents from inpa-
tient and community programs, caregivers at different phases
of their experience (e.g. ranging from 1 month to >1 year post-
stroke) were interviewed. This was advantageous because we
did not have to rely on long periods of recall for all participants
when discussing the early phases of their care-giving experi-
ences. A breadth of care-giving experiences was obtained by
including individuals caring for stroke survivors with physical,
cognitive, and communication deficits from both urban and
rural living environments. Members of the health care teams
introduced caregivers to the study and referred interested care-
givers to the research team who explained the study, obtained
written consent, and conducted the interview.
HCPs whose primary clinical responsibility was stroke
care including rehabilitation professionals, nurses, and
social workers were interviewed. They were recruited from
the same sources as the family caregivers with the addition
of an acute care hospital and a home care service provider.
HCPs received a study information email from their program
manager. Interested HCPs contacted members of the research
team who explained the study, obtained written consent, and
conducted the interview. Institutional research ethics boards
approved the study protocol.
Data collection
Caregivers and HCPs each participated in one interview either
in-person or by telephone depending on participant preference
[20,21]. Caregivers were asked to discuss their personal needs
for emotional, informational, and instrumental (e.g. caregiver
training and hands on assistance) support at different times
 Family caregivers’ changing support needs  317
corresponding to the phases of the TIR framework. HCPs Table I. Sample Interview Questions.
were asked to describe the supports they provide to caregivers Family Caregiver:
and to identify other supports they felt the caregivers need, When your family member/significant other was hospitalized for a
but may not receive corresponding to their place of practice. stroke, can you describe your personal experiences for me?
See Table I for some sample interview questions from the Prompts:
caregiver and HCP interviews. Interviews were audio taped,   a. What information and or support did you receive? How? Was it
professionally transcribed verbatim, and transcripts were helpful or unhelpful? Why?
checked for accuracy by the first author. Data were collected   b. Please tell me about your unmet needs for information, training,
in each participant group until theme saturation. and/or support at this time.
  c. How and where would you like to have received this information,
training, and/or support?
Data analysis
Health Care Professional:
The transcripts were analyzed using the five stages of qualita-
Please describe your first interactions with stroke survivors’ family
tive framework analysis: (1) familiarizing by listening to the
members and/or informal care providers including when this occurs,
interviews and reviewing the transcripts; (2) selecting a the- what you feel their needs are, and potential ways to meet their needs.
matic framework (i.e. TIR model); (3) coding the data accord- Prompt: needs for emotional support, information, training, feedback
ing to the framework; (4) charting the data on the framework,
and (5) interpreting the data to generate themes [18,19]. Two
authors reviewed the transcripts and developed the code book
by determining the key points of discussion in each passage. Table II. Caregiver characteristics (n = 24).
Using the TIR model as the thematic framework, the codes Characteristic Number†
were repeated for each phase of the framework. For example, Femalea 17 (70.8%)
the code “information needed” was used five times, once for Spousal caregivera 18 (75.0%)
each phase of the TIR framework (i.e. information needed – Daughter/son caregivera 6 (25.0%)
event phase, information needed – stabilization phase, etc.). Age (years)b 65.5 (36–77)
After the codebook was fully developed, one author reviewed Months since strokeb 11 (1–134)
each transcript to code the key messages in each passage and Urban residencea 14 (58.3%)
within each phase of the TIR model. This coded data was then Stroke-related disabilitya,c
summarized within and across phases of the TIR framework  Aphasia 15 (62.5%)
and separately for caregivers and HCPs. We summarized the  Mobility 15 (62.5%)
coded data to identify the over-riding themes and describe
 Cognitive/memory 7 (29.2%)
how they changed corresponding to the phases of the TIR
 Vision 3 (12.5%)
framework. We also compared and contrasted the caregiver
Health care setting for recruitmenta
and HCP data to understand how their perspectives influ-
  Rehabilitation centre 9 (37.5%)
enced the themes. NVivo qualitative software facilitated the
  Community care 15 (62.5%)
coding process [22].
Phase at time of interviewa
We used two strategies to enhance the trustworthiness of
 Preparation 4 (16.7%)
our findings – multiple researchers and peer debriefing [23].
 Implementation 6 (25.0%)
First, as described above, two authors reviewed the data,
 Adaptation 14 (58.3%)
contributed to code book development, and met regularly to aNumber
(percentage); bmedian (range).
ensure consistency in the definitions and interpretations of cNote:
Persons with stroke commonly have more than one stroke related disability.
the codes [23]. Second, preliminary results were discussed
with the project’s research team and other HCPs to consider
alternative interpretations of the data [23,24]. Table III. Health care professional characteristics (n = 14).
Characteristic Numbera
Femalea 13 (93%)
Results Years in stroke clinical practiceb 11 (2–30)
Twenty-four caregivers and 14 HCPs participated in the study. Clinical trainingb
The median length for the caregiver and HCP interviews were   Nurse (RN, APN, CNS) 5 (36%)
43 (range 29 to 95 min) and 30 (range 15 to 50 min) min,   Occupational therapist 2 (14%)
respectively. Fifteen (62.5%) caregivers and 7 (50%) HCPs   Physical therapist 2 (14%)
were interviewed by telephone interview. Table II summarizes   Speech language pathologist 3 (21%)
the characteristics of the caregivers and their family member’s   Case manager or social worker 2 (14%)
main areas of stroke-related disability. Table III summarizes Health care settinga
the HCPs’ characteristics.   Acute care 4 (29%)
Three over-riding themes concerning caregivers’ needs for  Rehabilitation 5 (36%)
support and health care system-related factors that influence   Community care 5 (35%)
support emerged from the interviews: (1) the type and Family member experienced a stroke 3 (21%)
intensity of support needed; (2) who provides support and the aNumber
(percentage); bmedian (range).

© 2013 Informa UK, Ltd.

318  J. I. Cameron et al.
method of providing support; and (3) the primary focus of
care. The characteristics of these themes varied by the phases of
the TIR framework, are discussed below, and are summarized
in Table IV. Overall, caregivers and HCPs discussed similar
issues providing a comprehensive view of caregivers’ needs.
Their comments are combined in the sections below and, in
situations where their perspectives differed, these differences
are described. In the following sections, these themes are
described including sample quotations from caregivers and
HCPs using “C” and “HCP” respectively, followed by their
participant number to indicate the source of the quotation.
Theme 1: The Type and Intensity of Support Needed
In general, caregivers and HCPs agreed on the types of infor-
mational, emotional, and instrumental supports caregivers
needed and how these needs changed over the course of a
stroke survivor’s recovery. Information needs changed in
magnitude over time. Less information was needed during
the event/diagnosis and stabilization phases. More informa-
tion was needed during the preparation and implementation
phases. During the adaptation phase, needs varied with those
caring for individuals with more physical, cognitive, and/or
communication difficulties reporting more needs. The type
of information needed also changed over time. At the time
of the acute stroke event, needs largely focused on diagnosis
and treatment. After the patients’ medical condition stabi-
lized, information needs became more diverse and related
to recovery and rehabilitation. During the preparation and
implementation phases, needs were largest and most diverse
as they related to long-term treatment goals, providing care,
negotiating community care, secondary prevention, and navi-
gating the health care system. During the adaptation phase,
needs focused mainly on avoiding future strokes and endur-
ing care needs. The following quotation from a wife caring for
her husband who has aphasia reflects their need for informa-
tion about how to provide care that she would have liked to
receive during the preparation phase:
“When you go home, this is what you can do and this is what you can’t
do. And this is what you should do and shouldn’t do. I just needed a little
more of that”. (C1)
Emotionally, caregivers’ discussed being stressed by the
stroke experience and, therefore, needed to feel cared for by
others (see Table IV). This experience was most pronounced
during the event/diagnosis, stabilization, and implementation
phases. During the preparation phase, caregivers discussed
being more relaxed and excited to bring the stroke survivor
home. Caregiver stress often returned once they began to
experience some of the challenges of providing care in the
home. During the adaption phase, caregivers were generally
feeling better.
Most HCPs based in acute hospitals or rehabilitation facili-
ties felt that caregivers needed information about the status of
the stroke survivor and treatment options to put their mind
at ease. Caregivers did not discuss the provision of informa-
tion by HCPs as contributing to their emotional well-being.
HCPs also felt that social workers were providing emotional
Disability & Rehabilitation
support, but caregivers reported receiving assistance with
service coordination, but not emotional support, from social
workers. In the community, some HCPs noticed the stress
caregivers were experiencing and tried to address these needs
by involving them in the care of the stroke survivor. The fol-
lowing quotation is from a community-based HCP who tried
to address caregivers’ needs for reassurance during the first
few months after the stroke survivor returns home (i.e. imple-
mentation phase):
“They (caregivers) need ongoing reassurance and to have their fears,
their worries addressed and I think they also need to be involved because
they feel very helpless. I find a lot of times I will give them tasks. You
can do the exercises with your loved ones. You can encourage them; you
can help them as I’ve shown you how to help them. So you can carry on
part of therapy and you know for the most part they think that’s great
because then they feel part of it” (HCP4)
Family caregivers discussed receiving instrumental sup-
port throughout the care journey (see Table IV). There was
no distinction between the types of instrumental support
received during the event/diagnosis and stabilization phases.
When HCPs provided things like a blanket, assistance with
finding parking or a place to stay overnight, or when family
members kept them company, caregivers felt cared for and
this contributed to their emotional well-being. During the
preparation phase, HCPs were interested in preparing the
stroke survivor and caregiver for the transition home and this
included offering weekend passes and making any necessary
home modifications prior to discharge. During the imple-
mentation phase, some caregivers discussed receiving a small
to moderate amount of assistance to manage the day-to-day
care of the stroke survivor, including respite, home care ser-
vices, paid help, and help from family and friends, but access
to more of these services was desired. During the adaptation
phase, caregivers who received these early supports were
pleased when they continued. Caregivers, who did not receive
ongoing support, would have liked these forms of assistance
to continue. The following quotation is from an employed
wife who is caring for her husband and resides in a rural area
discussing their need for ongoing support services during the
adaptation phase:
“I’ve often said... if I was the disabled one at home and my husband
was working, I would probably be able to get someone to come and
help clean the house. People have told me it’s available. If you’re a
woman they come and do it all because you’re disabled. But because
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
in the wood for the fireplace. I look after the garbage, I look after the
recycling, I clean the house… I take care of his needs – I take him to
appointments and I work. And I’m exhausted. I don’t sleep. It’s very,
very hard.” (C5)
Needs for training in the care-giving role were discussed
primarily during the preparation and implementation phases.
Neither caregivers nor HCPs discussed any training needs
during the event/diagnosis phase. During the stabilization
phase, a few caregivers, who more regularly attended the
hospital, received some training to support activities of daily
 Family caregivers’ changing support needs  319

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

- Emotional: sense of being cared for, sharing -F

 amily needs should be
experience with peers considered
- Instrumental: case manager, home safety, more
home care services based on needs of survivor
and caregiver, respite care, day programs, as-
sistance at home, follow-up call from in-patient
HCP to check on survivor and caregiver, person
to contact with questions, visits from family and
friends, organize long-term care papers
- Training: managing rehabilitation at home, com-
munication (aphasia), stroke survivor mental
health, support community reintegration,
managing the unexpected (e.g. problem solving
skills)
- Appraisal: need for feedback on their care-giving
skills
(Continued)

© 2013 Informa UK, Ltd.

320  J. I. Cameron et al.
Table IV. (Continued).
Phase Support needed
Adaptation - I nformation: communication, stroke affects the
whole family, life after stroke, community reinte-
gration, preventing or coping with future health
events, long-term care options, caregiver respite
opportunities
- Emotional: emotional comfort, sense caregiver is
being cared for
- Instrumental: re-assessment for community
and rehabilitation services, need for supports
received during implementation to continue,
respite, peer support groups
- Training: communication, prevention of future
events, learning to live with the chronicity of
stroke
HCP, Health Care Professional; F/F, Family or friends.
living (ADLs) but this training was not routine (see quotation
below). During the preparation phase, caregivers received
some training to support ADLs and rehabilitation therapy, but
felt that these needs were only “somewhat met”. HCPs tended
to focus more on providing information and less on actual
training activities, but did encourage caregivers to observe
therapy sessions. Caregivers’ greatest training needs occurred
during the implementation phase where they indicated that
these needs were not being met. Caregivers also needed, but
few received, feedback during the implementation phase
about what they were or were not doing correctly. The train-
ing needs that persisted into the adaptation phase concerned
aspects of stroke chronicity (e.g. communication difficulties).
The following is a quotation from an adult daughter caregiver
who regularly visited the care facility and did receive some
training during the stabilization phase:
“Then, only a couple of days ago, a nurse just happened to be there when
my Mom was getting out of bed. So she showed me the easier way for
my mother to get out of bed. And just yesterday, the easier way to get
her out of the wheelchair… so I would have appreciated knowing all
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
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
have definitely benefited me and my Mother… because I would have
been doing the things.” (C9)
Theme 2: Who Provides Support and the Method of
Providing Support
Caregivers received support from primarily three sources:
(1) HCPs, (2) family members and friends, and (3) peers (i.e.
individuals caring for family members who had experienced
a stroke). Each group provided different types of support at
different times and used different approaches (see Table IV).
HCPs were a key source of information during the inpatient
phases. HCPs provided information to caregivers individually
because they felt that information was discipline-specific.
Caregivers stated a preference for a more coordinated approach
where one individual obtained information from HCPs and
then shared this information with the family. HCPs used family
meetings to provide an update on the stroke survivor’s status,
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Source of support and type provided Focus and goal of care
- Peers: emotional support -W
 ould like stroke survivor
- HCP: support not evident and family caregiver to
- F/F: support decreases over time continue to be a focus of care
in terms of monitoring well-
being, service provision, and
information
current treatment, and future care needs. Caregivers discussed
being overwhelmed by the large amounts of medical infor-
mation being provided and did not feel that they had ample
opportunities to ask questions during or after the meeting.
HCPs struggled to determine when caregivers were ready
to receive information. A few HCPs tried to take a proactive
approach by providing information before needs occurred,
but most felt that information was provided only after care-
givers appeared to be stressed. Caregivers preferred to receive
information verbally followed by written material to review
at a later date. They were most receptive to written informa-
tion in the preparation and implementation phases and found
information books overwhelming during the event/diagnosis
or stabilization phases. The following quotation depicts one
daughter caregiver’s positive experience with receiving verbal
and written information during the preparation phase:
“But the fact that she, instead of just handing me information, she sat
down and went through each point even though I was so tired and I’m
going to remember it so much more. When I need to, I’ll know in the
sheets that she gave me where to go to look for the information.” (C9)
Overall caregivers reported receiving the least amount of
information from HCPs once the stroke survivor returned to
the community. Caregivers discussed needing the inpatient
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
the possibility of offering this type of outreach program. For
example, the following quotations from a daughter caregiver
and rehabilitation-based HCP highlight their thoughts about
the lack of follow-up during the implementation phase:
“They cast us adrift, you’re into the community and you’re on your own.
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
to see how you’re doing and that type of stuff. I would have loved some-
thing like that”. (C4)
“We don’t actually get to follow-up and find out [how they are managing
at home] because we have such a high case load… It’s very infrequent
that we would call a patient because we leave it up to the patient and
their family, which may be the wrong thing but just time wise we can’t
actually be doing that.” (HCP14)

During the adaptation phase, family caregivers began to
realize the chronic nature of stroke and, as a result, felt that
they should be continuing to receive the supports from the
health care system that they had received during the imple-
mentation phase. No caregivers reported receiving any lon-
ger-term information and HCPs did not discuss the need for
longer-term support.
Caregivers discussed how support received from family
members and friends decreased over time. During the inpa-
tient phases, family and friends were a constant source of
support and also provided help at home. In the community,
family members and friends provided more support during
the first few months after the stroke survivor returned home,
but, although family caregivers would have appreciated con-
tinuing to receive this support, it tended to decrease over
time. In the case of rural caregivers, they reported having
fewer family members living locally and, therefore, had less
family support across all phases.
Participants discussed caregivers’ need for support from
care-giving peers. This need became of greater importance
during the preparation and implementation phases when
caregivers wanted to learn practical tips about how to pro-
vide care in the community. During the adaptation phase,
peers also provided an emotional outlet for caregivers who
were more comfortable sharing their concerns about caring
for their family member with someone from outside the fam-
ily. Caregivers described having difficulty finding care-giving
peers. Some caregivers started their own peer support groups
with caregivers they met in outpatient clinic waiting rooms
or joined internet-based support groups. HCPs agreed that
support from peers was important and, as a result, a few
HCPs reported trying to directly connect new caregivers with
existing caregivers as well as organizing peer support groups
within their institution.
Theme 3: Primary Focus of Care
Participants discussed who was or should be the focus of care
post-stroke and how their preferences changed over time (see
Table IV). In general, HCPs emphasized the patients’ needs
across the care continuum and tended to consider caregiv-
ers’ needs most frequently during inpatient rehabilitation.
Caregivers also acknowledged the patient-centered nature of
care but, as they began to recognize their emerging role in
providing care and their own corresponding needs, caregivers
would have liked to see the health care system address their
needs in a more consistent and structured way.
During the event/diagnosis and stabilization phases, care-
givers received little support from the health care system but
acknowledged that the priority for the health care team was
the stroke survivor. During the preparation phase, caregivers
indicated that they expected more support from the health
care system than they received. In contrast, when the prepa-
ration phase occurred during inpatient rehabilitation, HCPs
were trying to actively involve families in therapy and meet
their needs for support. HCPs highlighted the difficulty of
engaging caregivers in therapy and education when they did
not consistently come to the rehabilitation hospital during
the clinicians work hours. In situations where HCPs gave
© 2013 Informa UK, Ltd.
Family caregivers’ changing support needs  321
caregivers information, training, and involved them in care,
caregivers described benefiting from their inclusion. The
following quotation demonstrates a wife caregiver’s positive
experience with being included:
“The physical therapists were wonderful. They sat down, they told me
what to expect. They showed me exercises to do with him. They told me
what they were doing with him. You know, I was free to come at any
time and take part in therapy”. (C7)
HCPs and caregivers suggested that caregivers’ involve-
ment in rehabilitation training and exercises facilitated the
patients’ transition back home. Once home, HCPs’ focus of
care returned to the patient. Home preparation for stroke sur-
vivor safety was a priority, but caregivers reported that their
needs and perspectives were rarely considered in the alloca-
tion of home care services. Caregivers viewed this as espe-
cially problematic as they felt that more services would have
alleviated some of their care-giving demands. In addition,
when HCPs came to the home to care for the patient, they had
little interaction with caregivers. HCPs suggested that this was
due to the limited amount of time per home visit. During the
adaption phase, caregivers would have preferred more com-
munity support and for the family (e.g. patient and caregiver)
to remain the focus of care provision.
Discussion and conclusion
Discussion
This qualitative study exploring the experiences and sup-
port needs of stroke family caregivers from the perspective
of caregivers and HCPs using the TIR framework suggests
that family caregivers’ support needs change over the course
of a stroke survivor’s recovery and community reintegration.
Our findings also suggest caregivers’ and HCPs’ have similar
perspectives on caregivers needs for support. Caregivers had
different informational and instrumental support needs for
each phase of the TIR framework. Their needs are highest
when preparing to bring the stroke survivor home and during
the first few months at home (preparation and implementa-
tion phases). Caregivers who have longer-term needs for
support are caring for stroke survivors with higher levels of
physical and/or cognitive disability, or communication diffi-
culties. Our findings also highlight caregivers’ needs for hands
on practice as well as feedback on their abilities to perform
care-giving tasks primarily during the preparation and imple-
mentation phases. The emotional needs of caregivers varied
less over time – specifically, caregivers consistently experi-
enced stress and strain. In response, caregivers needed to feel
cared for by HCPs, friends and family across all phases, and
by care-giving peers beginning in the preparation phase and
continuing to the adaptation phase. We also identified the key
roles of different sources of support – HCPs, family members,
friends, and peers – and delineated when across the phases of
the TIR framework their support was needed most. The one
area where there was there was a general lack of agreement
between caregivers and HCPs concerned who (patient or
family or both) should be the primary focus of care across all
322  J. I. Cameron et al.
phases of the TIR framework. HCPs consistently considered
the patient as the primary focus of care, but caregivers wanted
to become part of the focus starting in the preparation phase
and continuing through the implementation and adaptation
phases.
Previous studies have begun to describe the experiences
and needs of family members who take on the care-giving
role post-stroke from both qualitative [9,11,12,25] and
quantitative perspectives [26,27]. Emotionally, our caregiv-
ers reported experiencing the most stress during the acute
hospital phase as well as the first period back at home. This
is consistent with previous work by King and Semik [9] who,
using a mixed methods approach with a sample of 93 caregiv-
ers, identified these times as being the most difficult. Kerr and
Smith interviewed 22 stroke survivor/family caregiver dyads
approximately 1 year post-stroke to explore their experi-
ences and needs as they were preparing for discharge, during
discharge, during the first few months at home, 1 year post-
stroke, and their thoughts about the future [12]. Similar to
our study, their participants described the physical prepara-
tion needed to provide care, their need for emotional support,
their receipt of information, advice, and services and how
these needs changed between preparing to return home to the
first year post-stroke [12]. The caregiver sample in King and
Semik’s study suggested that they needed more preparation
to take on the care-giving role and without this preparation
caregivers experienced fear and uncertainty in their care-
giving role [9]. Our study was also able to describe caregiv-
ers’ needs for support during the earlier phases, specifically
the time surrounding the stroke event and after a period of
stabilization. Kerr and Smith’s findings also discussed the
strengths and limitations of receiving support from the health
and social care systems [12]. Our study explored the roles
of family members, friends, and care-giving peers in addi-
tion to the health and social care systems in the provision of
support and how their roles changed across the phases of the
TIR framework. Therefore, our study builds upon previous
research by delineating caregivers’ support needs from the
stroke event through to community reintegration as well as
the key roles and when the support of HCPs, family, friends,
and care-giving peers is needed.
Caregivers and HCPs discussed health care delivery issues
associated with receiving and providing support, respectively
and when these issues were most pronounced. We identified
two key challenges: (1) the focus on the patient and not the
family in care provision and (2) the limited ability of rehabili-
tation therapists to provide education and support to working
caregivers who generally come to care facilities after hours
and on weekends. Typically, patients are the focus of care for
HCPs across the care continuum, but caregivers would like
their needs to be considered more routinely when they are
preparing to take the stroke survivor home, during the first
few months at home while community services are being
allocated, and over a longer period of time when their needs
for support persist. These findings were echoed by King and
Semik (2006) whose care-giving participants discussed the
need for the health care system to go beyond the needs of
the patient to also address the education, information, and
Disability & Rehabilitation
training needs to help family members prepare to provide
care [9]. In addition, with our current model of health care
delivery, rehabilitation therapists work almost exclusively
during the day from Monday to Friday. As a result, it is dif-
ficult for them to prepare and support caregivers who work
during the day. This is important as more working age adult
children are taking on the role of caring for aging parents
[28] and there is a growing number of strokes occurring in
working age adults who are likely to have working age spou-
sal caregivers [29,30].
Current discussions about changes to stroke care delivery,
moving to a family-centered model of care and changing to
7-day a week rehabilitation, may benefit family caregivers.
Visser-Meily et al. suggest stroke rehabilitation should move
towards a family centered model of care that would address
the needs of both stroke survivors and their family caregivers
[31]. These issues are also highlighted in stroke best practice
guidelines (e.g. Canadian [32] and Australian [33]) where
they discuss the importance of educating and supporting
both the patient and family. For example, the Canadian and
Australian guidelines suggest that stroke survivors and their
family caregivers should receive timely education and sup-
port as their needs change and they transition across care
environments [32,33]. Our findings can help inform the edu-
cation and support content as needs change across the care
continuum.
Individuals advocating for more intensive stroke reha-
bilitation therapy to improve patient outcomes would include
7-day a week rehabilitation [34]. If this change were imple-
mented, HCPs would have more opportunities to prepare and
support caregivers over the weekends. Taken together, these
changes have the potential to benefit family caregivers by (1)
formalizing the need to address the needs of the family and
(2) making HCPs available outside typical Monday to Friday
working hours. Future research should explore how these
changes could be achieved efficiently and the potential ben-
efits to the patient, caregivers, and the health care system.
Caregivers and HCPs in our study discussed the need for
additional improvements to service delivery in the commu-
nity. Similar to previous stroke research [9], our caregivers
would like some form of outreach from HCPs affiliated with
the inpatient stroke team to see how they are managing and
provide any needed information or advice. Caregivers specifi-
cally wanted to receive this support during the implementa-
tion phase. HCPs agreed that outreach was important but did
not feel that they were easily able to do this with their case load
and because not all families were available during working
hours. A recent quantitative study by Eames and colleagues
(2011) explored stroke survivors’ and their family caregivers’
information needs and preferred delivery styles at discharge
and again 3-months post-discharge [27]. Their findings sug-
gest that in addition to receiving information face-to-face,
participants were also interested in receiving information in
writing, by telephone, using audiovisuals, and through the
internet suggesting that these formats may be viable options
for HCPs to provide education and support to caregivers [27].
In previous research, caregivers who received ongoing sup-
port from HCPs after the stroke survivor was discharged back

into the community reported improved continuity of care and
their minds being more at ease [35].
Care-giving peers were identified as important sources
of practical advice about supporting stroke survivors in the
community and this role was discussed primarily during the
preparation and implementation phases. During the adapta-
tion phase, peers became a source of emotional support in that
caregivers felt safe sharing their feelings about providing care.
King and Semik’s participants identified peer support to be
important but indicated that it was often difficult to connect
with care-giving peers [9]. Their participants did not indicate
when in the care trajectory peer support would be needed
or the types of support they would like to receive from peers
[9]. Research by Stewart et al. suggested that peers help meet
caregivers’ needs for support, lessen care-giving demands,
and enhance caregivers’ confidence and coping abilities [36].
Peer support groups can also provide hope and normalize the
experience [37,38].
Our study has some limitations. Caregivers were not pro-
spectively interviewed during their family member’s recovery
trajectory so some caregivers, who were one or more years post-
stroke, may have had difficulty trying to recall their needs dur-
ing the earlier phases. We did not interview caregivers to stroke
survivors who required institutionalization, so we cannot com-
ment on the experiences or needs of this care-giving population.
In addition, we did not interview stroke survivors to identify
their needs for support. Future research in these areas may help
us to obtain a fuller understanding of how the needs of stroke
survivors and family caregivers change across their recovery
trajectory or their placement into a long-term care facility.
Conclusion
As recommended by Greenwood, our research has begun to
delineate the influence of time on caregivers’ needs for sup-
port [13]. The results from this study suggest the TIR frame-
work helps capture caregivers’ changing needs for support
and, therefore, can inform development of caregiver support
programs. Specifically, caregivers’ needs for support and the
individuals most suited to providing support change across
the stroke survivor’s recovery trajectory. Difficulties associ-
ated with caregivers receiving support suggest changes to
stroke care delivery are needed. Some of these changes may
include: (1) support programs to address caregivers’ changing
needs over the course of a stroke survivor’s recovery trajec-
tory and return to community living; (2) adopting a family-
centered model of care; and (3) providing 7-day per week
inpatient rehabilitation. Implementation of these changes has
the potential to better prepare and support family members
who take on the care-giving role post-stroke.
Acknowledgements
We thank the caregivers and health care professionals who
took the time to participate in this research.
Declaration of Interest: This research was supported by a
Ministry of Health and Long-term Care Career Scientist
Award (JIC) and a research grant from CIHR Strategic
© 2013 Informa UK, Ltd.
Family caregivers’ changing support needs  323
Training Initiative in Health Care Technology and Place.
It was partly supported by the University of Toronto Mary
Trimmer Chair in Geriatric Medicine (GN).
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