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The caregivers’ perspectives of burden before and after an internet-based intervention of young persons with ADHD or autism spectrum disorder

Söderqvist, Helena; Kajsa, Eklund; Ahlström, Britt Hedman and Wentz, Elisabet LU (2017) In Scandinavian Journal of Occupational Therapy 24(5). p.383-392
Abstract

Background: Everyday life in a family with a young person with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD), is multifaceted and may be a burden to the caregivers. The aim was to explore experiences of the caregiver situation, and how they were affected when the young persons received Internet-Based Support and Coaching (IBSC). Method: A multiple descriptive case design was used. Ten caregivers of 10 young persons with ADHD and/or ASD participated, and completed a questionnaire, measuring caregiver burden. Three analysis methods were used; statistical analysis of the caregivers’ scores, case reports and qualitative content analysis of an open question. Results: Most of the caregivers never had to... (More)

Background: Everyday life in a family with a young person with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD), is multifaceted and may be a burden to the caregivers. The aim was to explore experiences of the caregiver situation, and how they were affected when the young persons received Internet-Based Support and Coaching (IBSC). Method: A multiple descriptive case design was used. Ten caregivers of 10 young persons with ADHD and/or ASD participated, and completed a questionnaire, measuring caregiver burden. Three analysis methods were used; statistical analysis of the caregivers’ scores, case reports and qualitative content analysis of an open question. Results: Most of the caregivers never had to provide hands-on help with primary ADL, and were able to cope with the young person’s problems. The caregivers’ role required patience. They had major worries about the future, when they would no longer be around to provide support. After the intervention, there was no common trajectory for all caregivers; their situation either remained unchanged, improved or deteriorated. Conclusions: The caregiver’s burden is more or less complex when the young person undergoes the transition into adulthood. The caregiver burden decreased in some families following the young person’s participation in IBSC.

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author
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Activities of daily living, ADHD, autism, caregiver burden, internet-based support
in
Scandinavian Journal of Occupational Therapy
volume
24
issue
5
pages
383 - 392
publisher
Taylor & Francis
external identifiers
  • scopus:85011294173
ISSN
1103-8128
DOI
10.1080/11038128.2016.1267258
language
English
LU publication?
no
id
dfba9465-194b-4c33-addf-ef8f00c6a853
date added to LUP
2017-02-21 15:29:38
date last changed
2018-01-07 11:51:41
@article{dfba9465-194b-4c33-addf-ef8f00c6a853,
  abstract     = {<p>Background: Everyday life in a family with a young person with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD), is multifaceted and may be a burden to the caregivers. The aim was to explore experiences of the caregiver situation, and how they were affected when the young persons received Internet-Based Support and Coaching (IBSC). Method: A multiple descriptive case design was used. Ten caregivers of 10 young persons with ADHD and/or ASD participated, and completed a questionnaire, measuring caregiver burden. Three analysis methods were used; statistical analysis of the caregivers’ scores, case reports and qualitative content analysis of an open question. Results: Most of the caregivers never had to provide hands-on help with primary ADL, and were able to cope with the young person’s problems. The caregivers’ role required patience. They had major worries about the future, when they would no longer be around to provide support. After the intervention, there was no common trajectory for all caregivers; their situation either remained unchanged, improved or deteriorated. Conclusions: The caregiver’s burden is more or less complex when the young person undergoes the transition into adulthood. The caregiver burden decreased in some families following the young person’s participation in IBSC.</p>},
  author       = {Söderqvist, Helena and Kajsa, Eklund and Ahlström, Britt Hedman and Wentz, Elisabet},
  issn         = {1103-8128},
  keyword      = {Activities of daily living,ADHD,autism,caregiver burden,internet-based support},
  language     = {eng},
  month        = {01},
  number       = {5},
  pages        = {383--392},
  publisher    = {Taylor & Francis},
  series       = {Scandinavian Journal of Occupational Therapy},
  title        = {The caregivers’ perspectives of burden before and after an internet-based intervention of young persons with ADHD or autism spectrum disorder},
  url          = {http://dx.doi.org/10.1080/11038128.2016.1267258},
  volume       = {24},
  year         = {2017},
}