Lived experiences of parents with deafblindness–not ‘a walk in the park’

Abstract

Purpose: to describe how parents with deafblindness experience parenting and family life.Materials and methods: this a qualitative interview study. Fourteen parents with deafblindness wereinterviewed. 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 deafblindnessis not a walk in the park, but it is rewarding’, and three subthemes, ‘Being a competent parent despitehaving deafblindness’, ‘Needing support to fulfil my parental obligations’ and ‘Parenting is a struggledue to my deafblindness’. the results encompass many experiences and feelings and illustrate thecomplex 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 withnegative aspects of being unable to take on the desired responsibility or not receiving the necessarysupport. When requested, tailored support should be offered from social services, health care andrehabilitation services in order for parents with deafblindness to take on the parental responsibilitythey want and to be able to actively participate in family life.