More research shows that fathers play a unique purpose in promoting the healthy psychosocial development of their children. However, when fathers have children with special needs, including a chronic or terminal illness, their children may require different interaction styles, instructional strategies, and methods of discipline than those used by fathers with typically developing children (DeFalco, Esposito, Venuti, & Bornstein, 2008). These differences, combined with a lack of support in the wider environment for families with special needs, can present specific challenges for fatherhood.
Fathers’ responses to child’s diagnosis and disability
- Fathers often have intense reactions to their child’s initial diagnosis (Hornby, 1992), including feelings of guilt, disappointment, lack of control, inferiority, and isolation, which can lower their overall sense of wellbeing (Davis & May, 1991).
- These stresses may have a negative effect on fathers’ partners too, the quality of the father-mother relationship, and fathers’ ability to care for and be involved with their children (Dyson, 1997).
- Controlling for socio-economic status, fathers of children with disabilities experience more depression, as well as more parenting and child-related stress, and often feel their parental situation is more uncontrollable (SCIE, 2005; Foundation for People with Learning Disabilities, 2007, as cited in Fatherhood Institute).
- Fathers and mothers tend to experience the challenges of raising a child with disabilities differently: mothers report more day-to-day stress while fathers report reduced satisfaction with family life (Lamb & Laumann-Billings, 1997, as cited in Fatherhood Institute 2007). These findings could be because mothers continue to assume more responsibility for daily caregiving, while experiences of fatherhood diverge so much from fathers’ expectations and ideal images of the role.
- A survey of 500 fathers in the UK (Scope, 2012) found that 84% feel financial pressure as a result of caring for a disabled child, forcing them to work long hours. 72% say caring for a disabled child has severely affected their relationship with their partner, with many relationships breaking down through stress, tiredness and lack of time with each other. Almost four in 10 say they do not fully understand their child’s condition. One in three say they are not fully confident that they know how to care for their child.
- At the same time, a lack of support compounds fathers’ stresses. The same survey found that 15% of fathers said their workplace does not even know they have a disabled child, and four in ten do not know that flexible working is an option. While eight in ten reported feeling alone, only about four in ten received help from support groups or professionals.
- Another challenge fathers face is how to engage their children in conventional father-child activities: for example, fathers of children with disabilities are often afraid to engage in roughhouse play (Gallagher & Bristol, 1989, as cited in HHS, 2010).
- At the same time, some fathers report that the experience of caring for a child with special needs has led them to experience personal growth and that this experience has enhanced their family life, suggesting that successful adaptation to their child’s disability over the longer-term can have a positive impact for fathers (Hornby, 1992).
Factors that influence the role of fathers
As with parenting in general, factors in the father’s environment, are critical to understanding his fatherhood role.
- The marital or partner relationship is critical in how fathers cope as their main supports are their partners. Single fathers, those whose partners are unwell, or who are in strained relationships suffer much more stresses (Harrison, Henderson & Leonard, 2007, as cited in Fatherhood Institute, 2007).
- Fathers from lower income families tend to be both more adversely affected by the child’s birth and to spend less time with their child with special needs than higher income and better educated fathers (Lamb & Laumann-Billings, 1997, as cited in Fatherhood Institute, 2007). This is likely due to the additional financial stresses that a child’s disability places on already strained low-income fathers who are typically breadwinners.
- A local study of Singaporean fathers with special-needs children found that fathers who agreed their involvement in their children’s learning was important were most likely to cite improving their knowledge or skills related to their child, and bonding with their child as motivations for their own involvement (MCYS, 2011).
- The Singaporean study also found that key barriers to fathers’ involvement in their children’s special education (SPED) schools were work responsibilities (93% of fathers) and a (perceived) lack of expertise on their child’s disability (57%).
- Fathers who perceive higher levels of social support and who have better coping skills are more likely to be involved with their children with special needs than are fathers who perceive lower levels of social support (Gavidia-Payne & Stoneman, 1997).
- Fathers who receive professional support specific to how to raise a child with special needs (such as by attending support groups for fathers of special-needs children) experience more positive adaptation and wellbeing than do fathers who lack such support (Lamb & Laumann-Billings, 1997). Fathers who experience support designed specifically for fathers also usually found it beneficial (Harrison et al, 2007, as cited in Fatherhood Institute, 2007).
- Key areas of support include helping fathers learn how to include their children in their favourite recreational activities where possible (Lamb & Laumann-Billings, 1997), and greater integration by mainstream clubs and activity groups for children with special needs (Scope, 2012).
- Involving fathers more in consultations with professionals, supporting them in their adjustment to their children’s diagnosis, and meeting their emotional needs could all help to maintain family life – a key outcome that parents of disabled children in general identified as critical (Beresford, Rabiee & Sloper, 2007). At the same time, such support is most accessible when conducted outside of working hours so that employed fathers (who are typically breadwinners in such families) can attend (Scope, 2012).
- Finally, much more support can be directed at the workplace to improve employer awareness of fathers’ roles as carers especially if they have children with special needs, and to encourage men to share their specific situation and caregiver responsibilities with employers (Scope, 2012).
- Beresford, B., Rabiee, P. & Sloper, P. (2007). Priorities and perceptions of disabled children and young people and their parents regarding outcomes from support services. Social Policy Research Unit, University of York. Retrieved from: http://www.fatherhoodinstitute.org/uploads/publications/344.pdf
- Darke, P. R., & Goldberg, S. (1994). Father-infant interaction and parent stress with healthy and medically compromised infants. Infant Behavior and Development, 17, 3-14.
- Davis, P. B., & May, J. E. (1991). Involving fathers in early intervention and family support programs: Issues and strategies.Children’s Health Care, 20(2), 87-92.
- DeFalco, S., Esposito, G., Venuti, P. & Bornstein, M. (2008). Fathers’ play with their Down Syndrome children. Journal of Intellectual Disability Research 52(Pt 6), 490-502.
- Dyson L. (1997) Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support. American Journal on Mental Retardation, 102, 267-279.
- Fatherhood Institute (2007). Fatherhood Institute research summary: Fathers and disabled children. Retrieved from: http://www.fatherhoodinstitute.org/2007/fatherhood-institute-research-summary-fathers-and-disabled-children/
- Gavidia-Payne, S., & Stoneman, Z. (1997). Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development, 68(4), 701-717.
- Hallahan, D. P., & Kauffman, J. M. (2006). Exceptional learners: Introduction to special education (10th ed.). Boston: Allyn & Bacon.
- Hornby, G. (1992). A review of fathers’ accounts of their experiences of parenting children with disabilities. Disability, Handicap, and Society, 7(4), 363-374.
- Lamb, M. E., & Billings, L. A. L. (1997). Fathers of children with special needs. In M. E. Lamb (Ed.), The role of the father in child development (3rd ed., pp. 179-190). New York: John Wiley & Sons.
- Lessenberry, B. M., & Rehfeldt, R. A. (2004). Evaluating stress levels of parents of children with disabilities. Council for Exceptional Children, 70 (2), 231-244.
- Ministry of Community Development, Youth and Sports (MCYS) (2011). Study on parental involvement in special education schools.
- Scope (2012). Dad and me. Retrieved from: http://www.scope.org.uk/news/dads-survey.
- US Department of Health and Human Services for Children and Families (HHS) (2010). Responsible fatherhood spotlight: Father involvement – Children with disabilities. Retrieved from:http://health.nv.gov/PDFs/BEIS/2010Feb_FatherInvolvementChildrenWithDisabilities.pdf
About the Author: The Dads for Life Resource Team comprises local content writers and experts, including psychologists,counsellors, educators and social service professionals, dedicated to developing useful resources for dads.
First published on 11-03-2013.