Publication type: Article in scientific journal
Type of review: Peer review (publication)
Title: The family transition experience when living with childhood neuromuscular disease : a grounded theory study
Authors: Waldboth, Veronika
Patch, Christine
Mahrer-Imhof, Romy
Metcalfe, Alison
et. al: No
DOI: 10.1111/jan.14754
Published in: The Journal of Advanced Nursing
Issue Date: 12-Jan-2021
Publisher / Ed. Institution: Wiley
ISSN: 0309-2402
1365-2648
Language: English
Subjects: Adolescent; Family; Genetics; Grounded theory; Neuromuscular diseases; Nursing; Transitional care
Subject (DDC): 306.8: Family sociology
616: Internal medicine and diseases
Abstract: Aims: Neuromuscular diseases are rare conditions that present with progressive muscular weakness. As affected children transition into adulthood, they become more physically dependent on their families for support. There is little evidence on the family transition experience, which this study explored to identify experiences, challenges, and strategies of coping. Design: Informed by family systems theory, a constructivist grounded theory study was conducted (2014–2017). Methods: Data were collected by one‐on‐one interviews with a purposive sample of affected Swiss individuals and their families from 2015 to 2016. Data analysis used coding, memo writing, theoretical sampling, and constant comparison techniques. Results: The analysis of 31 interviews with 10 affected individuals and 21 family members resulted in an interpretive theory constituted of four categories: (a) living with physical dependence, while striving for independence; (b) balancing proximity; (c) conforming and challenging social standards and expectations; and (d) grieving for loss, while joining forces for life. Conclusion: Family functioning and well‐being were threatened by recurring tension from stress, physical and emotional difficulties, strained relationships, and conflict. The families’ strategies of coping and adaptation and their relationships and communication shaped their transition experience. Impact: Families that experience threats to their well‐being and functioning would benefit from: needs assessment and monitoring; planning of appropriate family interventions; support of family relationships and communication, effective coping, and mastery; and positive adaptation to change.
URI: https://digitalcollection.zhaw.ch/handle/11475/21486
Fulltext version: Published version
License (according to publishing contract): Licence according to publishing contract
Departement: Health Professions
Organisational Unit: Institute of Nursing (IPF)
Published as part of the ZHAW project: Erwachsenwerden mit einer neuromuskulären Krankheit: Erfahrungen betroffener Jugendlicher und ihrer Familien
Caring for Patients with Neuromuscular Diseases in Switzerland
Appears in collections:Publikationen Gesundheit

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