"Understanding my ALS". Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation.
Purpose: The aim of this study was to gain insight into experiences and reflections of persons with amyotrophic lateral sclerosis and relatives concerning the peer group rehabilitation programme "More Life – Less Illness". Methods: This qualitative study used the Interpretive Description methodology...
| Publicado en: | Disability & Rehabilitation Vol. 41; no. 12; pp. 1410 - 1419 |
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| Autores principales: | , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Jun2019
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=135992015&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 135992015 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09638288 B73 jtl: Disability & Rehabilitation issn: 09638288 maglogo: Y pubinfo: dt: Jun2019 vid: 41 iid: 12 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 135992015 135992015 135992015 10.1080/09638288.2018.1429499 135992015 ppf: 1410 ppct: 9 formats: tig: atl: "Understanding my ALS". Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation. aug: au: Madsen, Louise Sofia Jeppesen, Jørgen Handberg, Charlotte affil: Department of Public Health, Faculty of Health, Section for Clinical Social Medicine and Rehabilitation, Aarhus University, Aarhus, Denmark sug: subj: Patient Attitudes Amyotrophic Lateral Sclerosis Rehabilitation Rehabilitation, Community-Based Peer Group Extended Family Psychosocial Factors Family Attitudes Funding Source Human Denmark Qualitative Studies Descriptive Research Symbolic Interactionism Interviews Male Female Observational Methods Middle Age Aged Data Analysis Software Middle Aged: 45-64 years Aged: 65+ years Male Female ab: Purpose: The aim of this study was to gain insight into experiences and reflections of persons with amyotrophic lateral sclerosis and relatives concerning the peer group rehabilitation programme "More Life – Less Illness". Methods: This qualitative study used the Interpretive Description methodology with Symbolic Interactionism as the analytical framework. Eighteen programme participants representing persons with amyotrophic lateral sclerosis (n = 8) and relatives (n = 10) were included. Data consisted of individual interviews and participant observation. Results: The analysis revealed two categorical themes, "Sense of Community Building" and "Understanding my ALS", which represented the participants' experiences and reflections on peer group rehabilitation. Through the analysis, it became apparent that "Sense of Community Building" gave rise to an increased and personalised understanding of amyotrophic lateral sclerosis among the participants. As a part of the continuous processing of the knowledge gained, "Facing Facts" and "Retaining Normality" appeared as subthemes regarding the participants' ability to live a less dependent and more meaningful life. Conclusions: This study of peer group rehabilitation for persons with amyotrophic lateral sclerosis and relatives indicates that programme participation leads to positive experiences in terms of living a shared meaningful life despite severe disability. The findings may guide practice to develop longitudinal peer group rehabilitation programmes with joint inclusion of persons with amyotrophic lateral sclerosis and relatives. Peer group rehabilitation may facilitate an increased and personalised understanding of what it means to live with amyotrophic lateral sclerosis. A programme design with six months of sequential sessions enables a continuous processing of shared experiences and gained knowledge. Joint participation of persons with amyotrophic lateral sclerosis and their relatives supports both their internal relationship and social networking. Peer group rehabilitation in amyotrophic lateral sclerosis should help overcome obstacles concerning the needs of participants, accessibility, and geographical distance. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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