Impact of Child Disability on the Family

Nancy E. Reichman; Hope Corman; Kelly Noonan

Disclosures

Matern Child Health J. 2008;12(6):679-683. 

In This Article

Implications for the Family

Living with a disabled child can have profound effects on the entire family–parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.

For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.

Surprisingly little is known about the ripple effects of child disability on the family. Population-based research, particularly on demographic or economic outcomes, is scant. Existing studies indicate that having an infant with a serious health condition or health risk increases the likelihood that parents divorce[2,3,4] or live apart;[5] that the mother does not work outside of the home;[6,7] and that the mother relies on public assistance.[8] It also leads to a reduction in the father's work hours.[9] Another study found that parents with disabled children have lower rates of social participation than parents without a disabled child and that they are less likely to have large families.[10]

Studies in the psychology literature indicate that a number of specific child health conditions are associated with poor mental health outcomes of parents and siblings. A recent meta-analysis indicates that peer activities and cognitive development scores are lower for siblings of children with a chronic illness compared to controls.[11] Virtually nothing is known about siblings' long-term economic, demographic, and physical health outcomes. Another potentially important but under-explored area is how child disability affects the well-being of grandparents and other extended family members and how the responses of those individuals to having a disabled child in the family affect the child's parents.[12] Yet another crucial gap involves the extent to which family characteristics and resources modify the effects of children's health status on families. A recent study found that low socioeconomic status and maternal depression increase the negative financial impacts and caregiving burdens associating with raising an extremely low birthweight infant.[13] Overall, much more needs to be learned about how children's health affects their parents, siblings, grandparents, and extended family members.

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