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The consequences of deafblindness rules the family: Parents’ lived experiences of family life when the other parent has deafblindness
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-6419-2417
Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-4599-155X
Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
2022 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 40, no 1, p. 18-28Article in journal (Refereed) Published
Abstract [en]

Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.

Place, publisher, year, edition, pages
Sage Publications, 2022. Vol. 40, no 1, p. 18-28
Keywords [en]
Deafblindness, dual sensory loss, everyday life, family, partner
National Category
Nursing Ophthalmology
Identifiers
URN: urn:nbn:se:hj:diva-50272DOI: 10.1177/0264619620941895ISI: 000548882400001Scopus ID: 2-s2.0-85087978641Local ID: HOA;;1458851OAI: oai:DiVA.org:hj-50272DiVA, id: diva2:1458851
Available from: 2020-08-18 Created: 2020-08-18 Last updated: 2022-01-09Bibliographically approved

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Björk, MariaHuus, Karina

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