Rewards and challenges of parenting a child with Down syndrome: a qualitative study of fathers' perceptions

Disabil Rehabil. 2020 Apr 7;1-12. doi: 10.1080/09638288.2020.1745907. Online ahead of print.


Aim: Most studies on parenting children with Down syndrome and other intellectual disabilities have focused on stress and coping; however, research has shown many rewards in parenting such children. Additionally, most research has assessed mothers' rather than fathers' perspectives. To take steps toward filling these literature gaps, we asked fathers of children with Down syndrome about their parenting experiences.Methods: Participants were 175 fathers of children with Down syndrome. Open-ended questions asked fathers what they found most rewarding and challenging about parenting a child with Down syndrome. Researchers coded responses using inductive content analysis.Results: Key themes for rewards included: (1) Child's Positive Attributes and Behaviors; (2) Rewarding Father-Child Relationship; (3) Child Has Positively Changed Father; and (4) Father's Positive Relationship with Others. Key themes for challenges included: (1) Father's Thoughts, Emotions, and Behaviors; (2) Child's Challenging Behavior and Development; (3) System and Institutional Problems; and (4) Other People's Negative Attitudes/Behaviors.Conclusions: Rewards mainly concerned the father-child bond and the loving, happy child. Fathers rarely mentioned financial stressors or their children's negative behaviors. Instead, many fathers reported children's speech problems. Our findings may assist healthcare professionals in providing more beneficial resources and interventions (especially language-related ones) to families with a child with Down syndrome.Implications for rehabilitationConsistent with a positive psychology approach, fathers reported more rewards than challenges in raising a child with Down syndrome.There may be a need for greater involvement of fathers in language interventions for children with Down syndrome.Healthcare professionals can assist parents of children with Down syndrome in recognizing parenting rewards.

Keywords: Down syndrome; fathers; father–child relations; intellectual disabilities; parenting; qualitative research.