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Lived experiences of parents with deafblindness - not 'a walk in the park'
Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; Faculty of Health and Social Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.ORCID iD: 0000-0001-7352-8234
CHILD research group, Department of Nursing Science, School of Health Sciences, Jönköping University, Jönköping, Sweden.
CHILD research group, Department of Nursing Science, School of Health Sciences, Jönköping University, Jönköping, Sweden.
Örebro University, School of Health Sciences. Örebro University, School of Behavioural, Social and Legal Sciences. University Health Care Research Centre.ORCID iD: 0000-0002-6378-4151
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2024 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed) Epub ahead of print
Abstract [en]

PURPOSE: To describe how parents with deafblindness experience parenting and family life.

MATERIALS AND METHODS: This a qualitative interview study. Fourteen parents with deafblindness were interviewed. Most were mothers (n = 10), with ages ranging between 33 and 57 years (mean 46 years). Interviews were transcribed, and the analysis was done using inductive qualitative content analysis.

RESULTS: The analysis resulted in the overarching theme, 'Living family life as a parent with deafblindness is not a walk in the park, but it is rewarding', and three subthemes, 'Being a competent parent despite having deafblindness', 'Needing support to fulfil my parental obligations' and 'Parenting is a struggle due to my deafblindness'. The results encompass many experiences and feelings and illustrate the complex reality of these parents in their parental role and family life.

CONCLUSION: The parents expressed their joy in being parents, but these feelings were intertwined with negative aspects of being unable to take on the desired responsibility or not receiving the necessary support. When requested, tailored support should be offered from social services, health care and rehabilitation services in order for parents with deafblindness to take on the parental responsibility they want and to be able to actively participate in family life.

Place, publisher, year, edition, pages
Taylor & Francis, 2024.
Keywords [en]
Deafblindness, disability research, family life, lived experience, needs, parenting
National Category
Public Health, Global Health and Social Medicine
Identifiers
URN: urn:nbn:se:oru:diva-118154DOI: 10.1080/09638288.2024.2443566ISI: 001385044800001PubMedID: 39727360Scopus ID: 2-s2.0-85213513100OAI: oai:DiVA.org:oru-118154DiVA, id: diva2:1925696
Funder
NyckelfondenRegion Örebro County
Note

Funding:

The authors received financial support for this research from MoGård, Nyckelfonden and the Research Committee at Region Örebro County, Sweden.

Available from: 2025-01-09 Created: 2025-01-09 Last updated: 2025-01-20Bibliographically approved

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Anderzen-Carlsson, AgnetaWarnicke, CamillaWahlqvist, Moa

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School of Health SciencesÖrebro University HospitalSchool of Behavioural, Social and Legal Sciences
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