Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
Fathers of kids with ID/DD travel unique five-year roads from shock to action—always assess each dad before picking support.
01Research in Context
What this study did
Hsieh et al. (2014) followed Swedish fathers of children with intellectual or developmental disabilities for five years. They used open interviews to map how each dad’s feelings and coping style changed over time.
The team looked for patterns in the dads’ own words. No tests, no scores—just stories.
What they found
Every father’s path looked different. Some stayed shocked and avoided talking about the disability. Others moved quickly into action—learning skills, joining groups, pushing for services.
By year five, most dads had landed somewhere in the middle: still worried, but busy doing. The key point: you can’t guess where a dad is by looking at the calendar.
How this fits with other research
DeLeon et al. (2003) sketched a life-course map for families of people with ID. Hsieh et al. (2014) fill that map with real father footsteps, showing the map’s stages are useful but not one-size-fits-all.
Rodríguez-Martínez et al. (2020) pooled data from many studies and found social support boosts caregiver resilience. K’s dads echo this: the ones who found friends or mentors moved faster toward active coping.
Sim et al. (2021) show immigrant mothers also transform after diagnosis, but they battle extra cultural and language barriers. Together these studies say: ask each parent, don’t assume.
Why it matters
If you run parent training or support groups, screen fathers first. A quick conversation—"Where are you today on shock versus action?"—tells you which resource to offer. One dad may need a listening ear, another needs a how-to manual. Tailoring saves time and keeps dads coming back.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one question to intake: "Dad, what feels hardest right now—learning about the diagnosis or finding next steps?" Use the answer to choose handouts, peer mentors, or emotional support.
02At a glance
03Original abstract
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later. METHODS: Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis. RESULTS: The analysis revealed three themes: (1) An interrupted path - no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed. CONCLUSIONS: Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12093