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Living with a parent with ALS - adolescents' need for professional support from the adolescents' and the parents' perspectives
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Neurology, Uppsala University Hospital, Uppsala, Sweden.
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden; Palliative Centre at the Sahlgrenska University Hospital Region Västra Götaland, Gothenburg, Sweden.
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2023 (Engelska)Ingår i: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, ISSN 2167-8421, E-ISSN 2167-9223, Vol. 24, nr 7-8, s. 727-735Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parent has amyotrophic lateral sclerosis (ALS)–from the adolescents’ and the parents’ perspectives.

Methods: A total of 37 individual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26 parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis.

Results: Both adolescents and parents described the adolescents as needing professional support but found it difficult to articulate this need. However, the results indicate that the adolescents needed help in bringing manageability into their lives due to the uncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not forgotten in the disease context and that their needs for being involved as well as for obtaining information and understanding, was addressed. The importance of offering the adolescents support early was emphasized, but also of actively helping the families to master challenges in their everyday life. Support adapted to each family’s unique situation and preferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied during different phases.

Conclusion: Given the adolescents’ need for information and understanding, healthcare professionals must actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given the opportunity to be involved based on their own conditions, as well as to support the families to strengthen their communication.

Ort, förlag, år, upplaga, sidor
Taylor & Francis, 2023. Vol. 24, nr 7-8, s. 727-735
Nyckelord [en]
adolescents as relatives, Amyotrophic lateral sclerosis, clinical trials, ethics, family support, motor neuron disease, neurophysiology, qualitative content analysis
Nationell ämneskategori
Neurologi
Identifikatorer
URN: urn:nbn:se:umu:diva-212495DOI: 10.1080/21678421.2023.2228348ISI: 001032196700001PubMedID: 37486108Scopus ID: 2-s2.0-85165590862OAI: oai:DiVA.org:umu-212495DiVA, id: diva2:1785184
Tillgänglig från: 2023-08-01 Skapad: 2023-08-01 Senast uppdaterad: 2023-12-29Bibliografiskt granskad

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