Abstract

To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD). There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society. A qualitative design was used to elicit the view and experiences of fathers. A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper. The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research. This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively. This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure.

Highlights

  • Major transformations in the roles of mothers and fathers within families have evolved and different types of families form part of the changing status of the social construct of the family, for example, families may comprise of heterosexual couples, single parents, couples co-parenting and same-sex couples (Carroll, 2018; Gates, 2015; Goldscheider, Bernhardt, & Lappegård, 2015; Golombok, 2015)

  • It is evident from our findings and the wider international research that fathers of young children with intellectual and developmental disability (IDD) require nurses and other healthcare professionals to be knowledgeable and responsive to their needs at the time of a disclosure of IDD and are required to embrace a culture of respect, inclusivity and collaborative working with all members of the family, including fathers

  • While becoming a father is a major life transition, fathers are more involved in their child's care, an involvement that transcends to fathers of children with IDD

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Summary

Introduction

Major transformations in the roles of mothers and fathers within families have evolved and different types of families form part of the changing status of the social construct of the family, for example, families may comprise of heterosexual couples, single parents, couples co-parenting and same-sex couples (Carroll, 2018; Gates, 2015; Goldscheider, Bernhardt, & Lappegård, 2015; Golombok, 2015). Societal changes and expectations of men have witnessed fathers taking on considerable responsibility for the rearing of their child. This increased involvement is recognised more globally in the wider family context (Allport et al, 2018; Broomhill & Sharp, 2012; Shapiro, Gottman, & Fink, 2019). This increased involvement extends to fathers of children with IDD (Davys, Mitchell, & Martin, 2017; MacDonald & Hastings, 2010; Takataya, Yamazaki, & Mizuno, 2016)

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