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Health perceptions of young adults living with recessive limb-girdle muscular dystrophy
Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
Cty Hosp, Jönköping.
Linköping University.
2016 (Engelska)Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 72, nr 8, s. 1915-1925Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

AimThe aim of this study was to describe health perceptions related to sense of coherence among young adults living with recessive limb-girdle muscular dystrophy. BackgroundLimb-girdle muscular dystrophy refers to a group of progressive muscular disorders that may manifest in physical disability. The focus in health care is to optimize health, which requires knowledge about the content of health as described by the individual. DesignA descriptive study design with qualitative and quantitative data were used. MethodInterviews were conducted between June 2012-November 2013 with 14 participants aged 20-30years. The participants also answered the 13-item sense of coherence questionnaire. Qualitative data were analysed with content analysis and related to self-rated sense of coherence. FindingsHealth was viewed as intertwined physical and mental well-being. As the disease progressed, well-being was perceived to be influenced not only by physical impairment and mental strain caused by the disease but also by external factors, such as accessibility to support and attitudes in society. Factors perceived to promote health were having a balanced lifestyle, social relations and meaningful daily activities. Self-rated sense of coherence varied. The median score was 56 (range 37-77). Those who scored 56 described to a greater extent satisfaction regarding support received, daily pursuits and social life compared with those who scored <56. ConclusionCare should be person-centred. Caregivers, with their knowledge, should strive to assess how the person comprehends, manages and finds meaning in daily life. Through dialogue, not only physical, psychological and social needs but also health-promoting solutions can be highlighted.

Ort, förlag, år, upplaga, sidor
2016. Vol. 72, nr 8, s. 1915-1925
Nyckelord [en]
chronic diseases, disability, LGMD2, nursing, sense of coherence, SOC-13
Nationell ämneskategori
Omvårdnad
Forskningsämne
Hälsovetenskap
Identifikatorer
URN: urn:nbn:se:lnu:diva-55771DOI: 10.1111/jan.12962ISI: 000379932000017PubMedID: 27005675Scopus ID: 2-s2.0-85027936262OAI: oai:DiVA.org:lnu-55771DiVA, id: diva2:955849
Tillgänglig från: 2016-08-26 Skapad: 2016-08-26 Senast uppdaterad: 2017-11-21Bibliografiskt granskad
Ingår i avhandling
1. Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
Öppna denna publikation i ny flik eller fönster >>Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
2017 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Växjö: Linnaeus University Press, 2017. s. 74
Serie
Linnaeus University Dissertations ; 296/2017
Nyckelord
chronic diseases, LGMD2, muscular dystrophy, parents, salutogenic, sense of coherence, young adults
Nationell ämneskategori
Medicin och hälsovetenskap
Forskningsämne
Hälsovetenskap, Vårdvetenskap
Identifikatorer
urn:nbn:se:lnu:diva-68737 (URN)978-91-88357-89-2 (ISBN)
Disputation
2017-11-10, Wicksell, Hus K, Växjö, 10:30
Opponent
Handledare
Tillgänglig från: 2017-11-16 Skapad: 2017-11-14 Senast uppdaterad: 2018-01-16Bibliografiskt granskad

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