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Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness
Department of Nursing Science, Jönköping University, Jönköping, Sweden.
Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.ORCID iD: 0000-0002-9002-6145
Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.ORCID iD: 0000-0001-7352-8234
Örebro University, School of Health Sciences. Örebro University Hospital. Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden; Audiological Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.ORCID iD: 0000-0002-6965-6820
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2022 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, no 1, article id 2064049Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described.

PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness.

METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data.

RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support.

CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Place, publisher, year, edition, pages
Taylor & Francis, 2022. Vol. 17, no 1, article id 2064049
Keywords [en]
Child as a relative, deafblindness, everyday life, parent, participation
National Category
Nursing
Identifiers
URN: urn:nbn:se:oru:diva-98657DOI: 10.1080/17482631.2022.2064049ISI: 000783690000001PubMedID: 35437116Scopus ID: 2-s2.0-85128453799OAI: oai:DiVA.org:oru-98657DiVA, id: diva2:1653420
Funder
Region Örebro County
Note

Funding agencies:

Research committee at Region Örebro County

Örebro University

MoGard

Nyckelfonden

Available from: 2022-04-21 Created: 2022-04-21 Last updated: 2022-05-03Bibliographically approved

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Sundqvist, Ann-SofieAnderzen-Carlsson, AgnetaWahlqvist, Moa

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