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  2. Gesundheit
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  4. Publikationen Gesundheit
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dc.contributor.authorWaldboth, Veronika-
dc.contributor.authorPatch, Christine-
dc.contributor.authorMahrer-Imhof, Romy-
dc.contributor.authorMetcalfe, Alison-
dc.date.accessioned2021-01-28T13:29:10Z-
dc.date.available2021-01-28T13:29:10Z-
dc.date.issued2021-01-12-
dc.identifier.issn0309-2402de_CH
dc.identifier.issn1365-2648de_CH
dc.identifier.urihttps://digitalcollection.zhaw.ch/handle/11475/21486-
dc.description.abstractAims: 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.de_CH
dc.language.isoende_CH
dc.publisherWileyde_CH
dc.relation.ispartofJournal of Advanced Nursingde_CH
dc.rightsLicence according to publishing contractde_CH
dc.subjectAdolescentde_CH
dc.subjectFamilyde_CH
dc.subjectGeneticsde_CH
dc.subjectGrounded theoryde_CH
dc.subjectNeuromuscular diseasesde_CH
dc.subjectNursingde_CH
dc.subjectTransitional carede_CH
dc.subject.ddc306.8: Familiensoziologiede_CH
dc.subject.ddc616: Innere Medizin und Krankheitende_CH
dc.titleThe family transition experience when living with childhood neuromuscular disease : a grounded theory studyde_CH
dc.typeBeitrag in wissenschaftlicher Zeitschriftde_CH
dcterms.typeTextde_CH
zhaw.departementGesundheitde_CH
zhaw.organisationalunitInstitut für Pflege (IPF)de_CH
dc.identifier.doi10.1111/jan.14754de_CH
dc.identifier.pmid33433037de_CH
zhaw.funding.euNode_CH
zhaw.issue4de_CH
zhaw.originated.zhawYesde_CH
zhaw.pages.end1933de_CH
zhaw.pages.start1921de_CH
zhaw.publication.statuspublishedVersionde_CH
zhaw.volume77de_CH
zhaw.publication.reviewPeer review (Publikation)de_CH
zhaw.funding.zhawErwachsenwerden mit einer neuromuskulären Krankheit: Erfahrungen betroffener Jugendlicher und ihrer Familiende_CH
zhaw.funding.zhawCaring for Patients with Neuromuscular Diseases in Switzerlandde_CH
zhaw.author.additionalNode_CH
zhaw.display.portraitYesde_CH
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Waldboth, V., Patch, C., Mahrer-Imhof, R., & Metcalfe, A. (2021). The family transition experience when living with childhood neuromuscular disease : a grounded theory study. Journal of Advanced Nursing, 77(4), 1921–1933. https://doi.org/10.1111/jan.14754
Waldboth, V. et al. (2021) ‘The family transition experience when living with childhood neuromuscular disease : a grounded theory study’, Journal of Advanced Nursing, 77(4), pp. 1921–1933. Available at: https://doi.org/10.1111/jan.14754.
V. Waldboth, C. Patch, R. Mahrer-Imhof, and A. Metcalfe, “The family transition experience when living with childhood neuromuscular disease : a grounded theory study,” Journal of Advanced Nursing, vol. 77, no. 4, pp. 1921–1933, Jan. 2021, doi: 10.1111/jan.14754.
WALDBOTH, Veronika, Christine PATCH, Romy MAHRER-IMHOF und Alison METCALFE, 2021. The family transition experience when living with childhood neuromuscular disease : a grounded theory study. Journal of Advanced Nursing. 12 Januar 2021. Bd. 77, Nr. 4, S. 1921–1933. DOI 10.1111/jan.14754
Waldboth, Veronika, Christine Patch, Romy Mahrer-Imhof, and Alison Metcalfe. 2021. “The Family Transition Experience When Living with Childhood Neuromuscular Disease : A Grounded Theory Study.” Journal of Advanced Nursing 77 (4): 1921–33. https://doi.org/10.1111/jan.14754.
Waldboth, Veronika, et al. “The Family Transition Experience When Living with Childhood Neuromuscular Disease : A Grounded Theory Study.” Journal of Advanced Nursing, vol. 77, no. 4, Jan. 2021, pp. 1921–33, https://doi.org/10.1111/jan.14754.


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