An exploratory study of parents' approaches to health promotion in families of adolescents with physical disabilities.

BACKGROUND

The life expectancy of children with physical disabilities now extends into adulthood and has been accompanied by the transfer of rehabilitation services from institutions to the home. Thus, families must increasingly partner with health service providers to promote their child's health and prevent the development of secondary conditions that may contribute to heart disease, stroke, respiratory diseases, low endurance and emotional difficulties.

OBJECTIVE

To investigate within a family context the health promotion efforts of parents on behalf of a child with a physical disability.

METHODS

The Long Interview Method was used to interview 15 families (11 two-parent and 4 single-parent) having a child 11-16 years of age with a physical disability including cerebral palsy (7), spina bifida (3), muscular dystrophy (3) and other conditions (2).

RESULTS

Parents' health promotion efforts were characterized by three main themes. First, parents emphasized traditional lifestyle health behaviours including nutrition, physical activity, tobacco, alcohol and drug use, and personal hygiene. Second, parents tried to foster their adolescent's social life and friendships. They expressed particular concern about how, and if, their child would develop a sense of purpose and have a productive future. Third, parents invested a great deal of effort into observing daily routines, making arrangements for their child's social inclusion and supporting their child in a way that balanced independence with safety and energy conservation.

CONCLUSIONS

Parents recognize that their child with a physical disability faces greater obstacles, and work hard at health promotion. Healthcare workers need to work with parents to: (1) provide information about specific lifestyle health behaviours including nutrition, physical activity and sexuality; (2) advocate for resources to foster social inclusion; and (3) discuss family strategies that balance parental involvement with their child's need for independence and energy conservation for daily activities.