The experiences of fathers on fathering children with disabilities: "a father and his daughter, that's it"

Internship report for the MSc research internship Biomedical Sciences, specialization International Public Health, done at the department of Medical Humanities and Disability Studies, VUmc.

Abstract:

Fathers of children with disability are greatly overlooked in research due to the predominant focus on mothers. Furthermore, there is a lack of research to the diverse nature of fatherhood in this context. Therefore, this study aimed to gain insight into the experiences of fathers of children with disabilities. Data collection was performed through semi-structured interviews with twelve Dutch fathers of children (under 23 years) with disabilities. Furthermore, pilot data of eight fathers of children (under 23 years) with disabilities, who participated in the European fathers’ study, was used. Categories that emerged during data analysis were similar to the factors illustrated in the conceptual framework on ‘responsible fathering’ by Doherty, Kouneski & Erickson (1998), including ‘role identification’, ‘commitment’, ‘employment characteristics’, ‘cultural expectations’ and ‘social support’. Overall, the fathers in this study reported similar experiences; however, Dutch fathers identified less with the provider role and reported more opportunities for social support as opposed to the European fathers. Above all, this study identified ‘new life perspective’ as an additional category, which might be specific for fathers of children with disabilities. This new life perspective included a positive attitude, living in the moment, appreciation of the little things and the transformation of expectations. Some fathers expressed that this experience has enriched their lives, which positively influenced their fathering experience.