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Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness
Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-4599-155X
Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
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.
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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
Sustainable development
Sustainable Development
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 Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-56251DOI: 10.1080/17482631.2022.2064049ISI: 000783690000001PubMedID: 35437116Scopus ID: 2-s2.0-85128453799Local ID: HOA;;808048OAI: oai:DiVA.org:hj-56251DiVA, id: diva2:1653520
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Region Örebro CountyAvailable from: 2022-04-22 Created: 2022-04-22 Last updated: 2022-05-02Bibliographically approved

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Huus, KarinaBjörk, Maria

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