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Living with a parent with ALS-adolescents' need for professional support from the adolescents' and the parents' perspectives
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- Malmstroem, Nina (author)
- Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences,Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden,Univ Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, House 1, Box 457, S-40530 Gothenburg, Sweden.
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- Jakobsson Larsson, Birgitta, 1965- (author)
- Uppsala universitet,Livsstil och rehabilitering vid långvarig sjukdom,Uppsala Univ Hosp, Dept Neurol, Uppsala, Sweden
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- Nilsson, Stefan, 1972 (author)
- Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Centrum för personcentrerad vård vid Göteborgs universitet (GPCC),Institute of Health and Care Sciences,University of Gothenburg Centre for person-centred care (GPCC),Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden,Univ Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, House 1, Box 457, S-40530 Gothenburg, Sweden.;Univ Gothenburg, Ctr Person Centred Care, Gothenburg, Sweden.
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- Taylor & Francis, 2023
- 2023
- English.
- In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. - : Taylor & Francis. - 2167-8421 .- 2167-9223. ; 24:7-8, s. 727-735
- Journal article (peer-reviewed)
Abstract
Subject headings
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- AimThe 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.MethodsA 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.ResultsBoth 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.ConclusionGiven 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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Neurologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Neurology (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Neurovetenskaper (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Neurosciences (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
Keyword
- Amyotrophic lateral sclerosis
- motor neuron disease
- adolescents as
- relatives
- family support
- qualitative content analysis
- neurophysiology
- clinical trials
- ethics
- >
- amyotrophic-lateral-sclerosis
- caregivers
- feasibility
- depression
- families
- carers
- burden
- life
- Neurosciences & Neurology
- adolescents as relatives
Publication and Content Type
- ref (subject category)
- art (subject category)
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- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (Search for host publication in LIBRIS)
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