Background
Informal
caregivers provide a large amount of day-to-day assistance and are
crucial for the ability of survivors to recover and adapt to life after
stroke.
Aim
The
development of caregiver support programs is limited by lack of large
long-term follow-up studies. We present a comprehensive study of Swedish
stroke caregivers' life situation in relation to degree of functional
dependency of the survivor.
Patients and methods
In
2016, the Swedish Stroke Register, Riksstroke, conducted a long-term
follow-up survey on caregivers to patients with stroke three and five
years earlier. Items on psychological well-being were adapted from the
36-item short-form health survey and poor outcome was defined using the
36-item short-form health survey reference material. Survivor degree of
dependency was indicated by the caregiver as independent, partially
dependent, or completely dependent.
Results
A
total of 5063 community dwelling dyads were included: 56.5% of
survivors were independent, 33.4% partially dependent, and 10.1%
completely dependent. Caregiver life impact, need of support, and
proportion of poor psychological well-being increased incrementally with
survivor degree of dependency. In the completely dependent group where
41.1% of survivors could not be left unattended for more than 1 h, 23.7%
of caregivers expressed unmet need of caregiver support; 51.4% reported
poor psychological well-being compared to 19.3% in the independent
group.
Conclusion
The
caregiver situation varies greatly with degree of survivor dependency
which makes generalizations of caregiver needs difficult. Our results
emphasize the need for integrating support aimed specifically at
caregivers to survivors of stroke with a large degree of dependency.
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