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Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study
Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
Cty Hosp, Jönköping.
Linköping University.
2015 (engelsk)Inngår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, nr 22, s. 2083-2091Artikkel i tidsskrift (Fagfellevurdert) Published
Resurstyp
Text
Abstract [en]

Purpose: To describe young adults' experiences of living with recessive limb-girdle muscular dystrophy (LGMD2) from a salutogenic orientation. Methods: A qualitative explorative interview study, including 14 participants aged 20-30 years, was performed focusing on comprehensibility, manageability and meaningfulness in daily life. Content analysis was used for data analysis. Result: Living with LGMD2 not only implies learning to live with the disease and the variations between good and bad periods but also means trying to make sense of a progressive disease that brings uncertainty about future health, by striving to make the best of the situation. Disease progression involves practical and mental struggle, trying to maintain control over one's life despite vanished physical functions that require continual adjustments to the body. Restrictions in a double sense were described, not only due to the disease but also due to poor comprehension of the disease in society. Lack of knowledge about LGMD2 among professionals often results in having to fight for the support needed. Conclusion: In order to manage daily life, it is important to be seen and understood as an individual in contacts with professionals and in society in general, to have informal social support and meaningful activities as well as access to personal assistance if necessary.Implications for RehabilitationRecessive limb-girdle muscular dystrophy (LGMD2) is a group of progressive disorders, which manifest in physical and psychological consequences for the individual.According to the salutogenic orientation, people need to find life comprehensible, manageable and meaningful, i.e. to achieve a sense of coherence (SOC), but living with LGMD2 may recurrently challenge the individual's SOC.Through the holistic view of the individual's situation that the salutogenic orientation provides, professionals may support the individual to strengthen SOC and thereby facilitate the movement towards health.

sted, utgiver, år, opplag, sider
2015. Vol. 37, nr 22, s. 2083-2091
Emneord [en]
Chronic diseases, LGMD2, muscular weakness, rare diseases
HSV kategori
Forskningsprogram
Hälsovetenskap
Identifikatorer
URN: urn:nbn:se:lnu:diva-51124DOI: 10.3109/09638288.2014.998782ISI: 000369748600007PubMedID: 25582030Scopus ID: 2-s2.0-84942898801OAI: oai:DiVA.org:lnu-51124DiVA, id: diva2:913372
Tilgjengelig fra: 2016-03-21 Laget: 2016-03-21 Sist oppdatert: 2017-11-30bibliografisk kontrollert
Inngår i avhandling
1. Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
Åpne denne publikasjonen i ny fane eller vindu >>Living with recessive limb-girdle muscular dystrophy: affected young adults’ and parents’ perspectives, studied througha salutogenic framework
2017 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
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.

sted, utgiver, år, opplag, sider
Växjö: Linnaeus University Press, 2017. s. 74
Serie
Linnaeus University Dissertations ; 296/2017
Emneord
chronic diseases, LGMD2, muscular dystrophy, parents, salutogenic, sense of coherence, young adults
HSV kategori
Forskningsprogram
Hälsovetenskap, Vårdvetenskap
Identifikatorer
urn:nbn:se:lnu:diva-68737 (URN)978-91-88357-89-2 (ISBN)
Disputas
2017-11-10, Wicksell, Hus K, Växjö, 10:30
Opponent
Veileder
Tilgjengelig fra: 2017-11-16 Laget: 2017-11-14 Sist oppdatert: 2018-01-16bibliografisk kontrollert

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