February 22, 2018
A systematic review of studies focused on stroke survivors' and
carers' experiences of primary care and community healthcare services
has found that they feel abandoned because they have become marginalized
by services and do not have the knowledge or skills to re-engage.
The study, by researchers at the University of Cambridge, suggests
that primary care and community healthcare interventions which focus on
improving active follow-up and information provision to patients and
caregivers, especially in the first year after stroke, could help
improve patient self-management and increase stroke-specific health
literacy.
Globally, stroke is the second leading cause of death. Stroke-related
disability burden is on the rise with a 12% increase worldwide since
1990, and contributes to the large economic burden of stroke due to
healthcare use, informal care and the loss of productivity. The annual
cost of stroke, including health care cost, medicines and missed days of
work, is estimated at $33 billion in the USA and £8.9 billion in the
UK.
Primary care could play an important role in the care of stroke
survivors and their caregivers, supporting access to community services
and facilitating transfer back to specialist services when new problems
emerge. It could also help provide training, and identify and address
health needs of caregivers. However, the feeling of abandonment that
people with stroke experience following hospital discharge suggests this
role is not being fulfilled.
To better understand the possible reasons behind this feeling of
abandonment, a team at Cambridge's Department of Public Health and
Primary Care carried out a systematic review of qualitative evidence in
the field. In total, they analyzed 51 studies (encompassing 566 stroke
survivors and 593 caregivers). Their results are published today in the
journal
PLOS ONE.
The analysis found an unaddressed need for continued support in a
quarter of studies. Survivors and caregivers felt frustrated and
dissatisfied with a lack of proactive follow-up either from primary
care, the hospital, or allied healthcare professionals. This led to
feelings of dissatisfaction, uncertainty, that a stroke survivor was
"forgotten and written off" and that their general practice did not care
about them.
Lack of support for caregivers was reported in more than one in five
studies (22%), even though they felt healthcare professionals assumed
that they would provide the majority of care needed. They felt ill
prepared and pressured to "become experts" in caring for stroke
survivors. In addition, both survivors and caregivers felt emotional
support was lacking, even though they are at risk of anxiety and
depression.
Long waiting times for assessment and rehabilitation and little or no
help from social services left survivors feeling "left in the lurch".
Caregivers felt that access to rehabilitation was not provided early
enough, causing survivors to "go backwards".
More than two out of five (41%) of studies highlighted gaps in
information provision. Opportunities for support could be missed due to
the lack of knowledge of what services were available. The lack of
information about local services and how to find them was confusing and
prevented access. Many caregivers and survivors had to find out
information by themselves from the internet, friends and other
caregivers. When information was provided, it was often inconsistent and
covered only some services.
A quarter (23%) of the studies highlighted inadequate information on
stroke, its consequences, and recovery. Information presented too early
after stroke disempowered stroke survivors and caregivers, leading to
feelings of confusion, fear and powerlessness. Survivors and caregivers
wanted specific information on the significance of post-stroke symptoms
and how to manage them. Lack of information led to unrealistic
expectations of "getting back to normal", leading to disappointment and
tensions between the survivor and caregiver.
Ineffective
communication between survivors, caregivers and healthcare services as
well as within healthcare services resulted in feelings of frustration
and having "to battle the system". Gaps in the transfer of knowledge
within the healthcare system and the use of medical jargon sometimes
caused confusion and were construed as indifference to survivors' needs.
"Patients and caregivers would benefit from active follow up and
information provision about stroke that is tailored to their specific
needs, which change over time," says Professor Jonathan Mant, who led
the study. "People take active efforts to find information for
themselves, but navigating and appraising it can be challenging. What is
needed is trustworthy information written in an accessible language and
format, which could support better self-management."
The study found that that many stroke survivors and caregivers felt
marginalized due to the misalignment between how healthcare access in
primary care is organized and survivors' and caregivers' competencies.
For example, individuals felt that in order to access services they
needed an awareness of what services are available, plus the ability to
communicate effectively with healthcare professionals. This situation
can be compounded by cognitive, speech and language problems that can
further affect a patient's ability to negotiate healthcare access.
"Stroke survivors and their caregivers can feel abandoned because
they struggle to access the appropriate health services, leading to
marginalization," says Dr Lisa Lim, one of the study authors. "This
arises because of a number of factors, including lack of continuity of
care, limited and delayed access to community services, and inadequate
information about stroke, recovery and healthcare services.
"We need mechanisms to encourage better communication and
collaboration between generalist services, which tend to provide the
longer term care after stroke, and specialist services, which provide
the care in the immediate phase post-stroke."
The researchers argue that providing support from healthcare
professionals within the first year after stroke would increase
patients' ability to
self-manage their chronic condition. This can be
achieved by providing timely and targeted information about stroke,
available resources, and by regular follow-ups to foster supporting
long-term relationships with healthcare professionals.
(This is a useless suggestion, it assumes managing your stroke disabilities rather than curing them)
"Giving the right information at the right time will help stroke
survivors and their caregivers become more self-reliant over time and
better able to
self-manage living with stroke," adds Dr Lim.
The team identified two key areas of improvement to address patients'
and caregivers' marginalization: increasing stroke-specific health
literacy by targeted and timely information provision, and improving
continuity of care and providing better access to community healthcare
services.
Yu Chen1†, 
Yuanyuan Wei
Ting Xiao
Yan Hua
Chunping Ni