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Experiences of being parents of young adults living with recessive limb-girdle muscular dystrophy from a salutogenic perspective
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
Region Jönköping ; Jönköping University.
Linköping University.
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 person's 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 one's own was also described. The median sense of coherence score was 68 (range 53–86). Those who scored high (≥68) described satisfaction with social network, external support provided, work and leisure activities to a greater extent than those who scored low (<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.

Place, publisher, year, edition, pages
Elsevier, 2017. Vol. 27, no 6, 585-595 p.
Keyword [en]
Limb-girdle muscular dystrophy, Parents, Sense of coherence
National Category
Neurology
Research subject
Health and Caring Sciences
Identifiers
URN: urn:nbn:se:lnu:diva-64640DOI: 10.1016/j.nmd.2017.01.024ISI: 000405881300013PubMedID: 28314630Scopus ID: 2-s2.0-85019188869OAI: oai:DiVA.org:lnu-64640DiVA: diva2:1104971
Available from: 2017-06-02 Created: 2017-06-02 Last updated: 2017-11-14Bibliographically approved
In thesis
1. Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
Open this publication in new window or tab >>Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis, using a salutogenic framework, was to develop knowledge about experiences and perceptions of living with recessive limb-girdle muscular dystrophy and its influences on health, from the affected young adults’ and their parents’ perspectives.

Methods: A qualitative explorative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy, aged 20–0 years, and 19 parents. Data analyses were conducted using content analysis (I, II, III) and phenomenography (IV). In order to mirror the interview data, the participants also answered the 13-item sense of coherence questionnaire.

Findings: Recessive limb-girdle muscular dystrophy has a major impact on the affected young adults’ and their parents’ lives as the disease progresses. Health described in terms of well-being was thus perceived to be influenced, not only by physical, emotional and social consequences due to the disease and worry about disease progression but also by external factors, such as accessibility to support provided by society and other people’s attitudes. There was, however, a determination among the participants to try to make the best of the situation. The importance of being able to mobilize internal resources, having social support, meaningful daily activities, adapted environment, the young adult being seen as a person and having support from concerned professionals, including personal assistance when needed, was thereby described. Self-rated sense of coherence scores varied. Those who scored above or the same as median among the young adults (≥56) and the parents (≥68) expressed greater extent satisfaction regarding social relations, daily activities and external support than those who scored less than median.

Conclusion: This thesis highlights the importance of early identification of personal perceptions and needs to enable timely health-promoting interventions. Through dialogue, not only support needed for the person to comprehend, manage and find meaning in everyday life can be identified, but also internal and external resources available to enhance health and well-being, taking into account the person’s social context as well as medical aspects.

Place, publisher, year, edition, pages
Växjö: DanagårdLiTHO, 2017. 74 p.
Series
Linnaeus University Dissertations, 296/2017
Keyword
chronic diseases, LGMD2, muscular dystrophy, parents, salutogenic, sense of coherence, young adults
National Category
Medical and Health Sciences
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-68737 (URN)978-91-88357-89-2 (ISBN)
Public defence
2017-11-10, Wicksell, Hus K, Växjö, 10:30
Opponent
Supervisors
Available from: 2017-11-16 Created: 2017-11-14 Last updated: 2017-11-16Bibliographically approved

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CiteExportLink to record
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Citation style
  • apa
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  • modern-language-association-8th-edition
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More styles
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