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Experiences of being parents of young adults living with recessive limb-girdle muscular dystrophy from a salutogenic perspective
Linnaeus University, Sweden.
Psychiat Clin, Sweden; Jönköping University, Sweden.
Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
2017 (English)In: Neuromuscular Disorders, ISSN 0960-8966, E-ISSN 1873-2364, Vol. 27, no 6, 585-595 p.Article in journal (Refereed) Published
Abstract [en]

Recessive limb-girdle muscular dystrophies (LGMD2) involve progressive muscle weakness. Parental support is important for young adults living with LGMD2, but no study has been identified focusing on the parents experiences. The salutogenic perspective concentrates on how daily life is comprehended, managed and found meaningful, i.e. the persons sense of coherence. The aim of this study was to describe, from a salutogenic perspective, experiences of being parents of young adults living with LGMD2. Nineteen participants were included. Data were collected by semi-structured interviews and the self-administrated 13-item sense of coherence questionnaire. Interview data were analysed with content analysis and related to self-rated sense of coherence. The result shows experiences of being influenced, not only by thoughts and emotions connected to the disease but also by caregiving duties and the young adults well-being. Simultaneously, difficulty in fully grasping the disease was expressed and uncertainty about progression created worries about future management. Trying their best to support their young adults to experience well-being and to live fulfilled lives, the importance of having a social network, support from concerned professionals and eventually access to personal assistance was emphasized. The need to have meaningful pursuits of ones own was also described. The median sense of coherence score was 68 (range 53-86). Those who scored high (amp;gt;= 68) described satisfaction with social network, external support provided, work and leisure activities to a greater extent than those who scored low (amp;lt;68). The result shows that the young adults disease has a major impact on the parents lives. Assessment of how the parents comprehend, manage and find meaning in everyday life may highlight support needed to promote their health. (C) 2017 Elsevier B.V. All rights reserved.

Place, publisher, year, edition, pages
PERGAMON-ELSEVIER SCIENCE LTD , 2017. Vol. 27, no 6, 585-595 p.
Keyword [en]
Limb-girdle muscular dystrophy; Parents; Sense of coherence
National Category
Sport and Fitness Sciences
Identifiers
URN: urn:nbn:se:liu:diva-139624DOI: 10.1016/j.nmd.2017.01.024ISI: 000405881300013PubMedID: 28314630OAI: oai:DiVA.org:liu-139624DiVA: diva2:1133720
Note

Funding Agencies|Linnaeus University, Sweden

Available from: 2017-08-16 Created: 2017-08-16 Last updated: 2017-08-16

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CiteExportLink to record
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Citation style
  • apa
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