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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.
The Sahlgrenska Academy at University of Gothenburg, Department of Health and Rehabilitation , Institute of Neuroscience and Physiology , Sweden..
The Sahlgrenska Academy at University of Gothenburg, Department of Health and Rehabilitation , Institute of Neuroscience and Physiology , Sweden..
University West, Department of Health Sciences, Section for health promotion and care sciences. The Vårdal Institute, Swedish Institute for Health Sciences , Lund , Sweden.ORCID iD: 0000-0001-5705-5705
The Vårdal Institute, Swedish Institute for Health Sciences , Lund , Sweden.
2017 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 24, no 5, 383-392 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2017. Vol. 24, no 5, 383-392 p.
Keyword [en]
Activities of daily living, ADHD, autism, internet-based support, caregiver burden
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-10655DOI: 10.1080/11038128.2016.1267258ISI: 000405478700008PubMedID: 28140737Scopus ID: 2-s2.0-85011294173OAI: oai:DiVA.org:hv-10655DiVA: diva2:1071758
Note

Published online: 31 Jan 2017

Available from: 2017-02-06 Created: 2017-02-06 Last updated: 2017-09-20Bibliographically approved

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