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Informal caregivers in stroke : Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study

Sennfält, Stefan LU and Ullberg, Teresa LU (2019) In International Journal of Stroke
Abstract

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... (More)

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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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
caregiver, long-term, psychological well-being, Stroke, support
in
International Journal of Stroke
publisher
Wiley-Blackwell
external identifiers
  • scopus:85068321347
ISSN
1747-4930
DOI
10.1177/1747493019858776
language
English
LU publication?
yes
id
b1fd13f5-6a4f-46b8-a005-8dd026203407
date added to LUP
2019-07-11 17:14:15
date last changed
2019-07-11 17:14:15
@article{b1fd13f5-6a4f-46b8-a005-8dd026203407,
  abstract     = {<p>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.</p>},
  author       = {Sennfält, Stefan and Ullberg, Teresa},
  issn         = {1747-4930},
  keyword      = {caregiver,long-term,psychological well-being,Stroke,support},
  language     = {eng},
  month        = {06},
  publisher    = {Wiley-Blackwell},
  series       = {International Journal of Stroke},
  title        = {Informal caregivers in stroke : Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study},
  url          = {http://dx.doi.org/10.1177/1747493019858776},
  year         = {2019},
}