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Study by the University of Minnesota
Size of the Problem
Students with health care needs are much more likely to be dissatisfied with their personal lives than their same aged peers. They are more likely than their peers to believe their friends don't care about them to any great extent. Parents of children with significant disabilities may become isolated from family and social networks much earlier in their lives, because of their all-pervasive caring role. In later years their isolation may thus be even greater.
A study of parents caring for young adults with significant disabilities revealed that at this stage very few had frequent or close contact with family outside the household, or with friends. Few of the families were part of an active social network, which provided even moral support. Such isolation, especially of mothers, can result not only from the fact that they are tied to the house, and because people tend not to want to visit such a household, but also because as their children grow up they have less and less in common with friends and relatives who have children of the same age.
Based on its own survey in the year 2000, National Organization on Disabilities reported "fully 4 out of 10 people (40%) with severe disabilities are not at all involved in their communities, almost twice the percentage for people without disabilities (21%)."
Although children themselves bear the major psychosocial burden of their chronic health condition, studies have documented increased psychological risk among their parents. The nuclear family primarilly provides most of the care for their children with disabilities. Family involvement in care can strengthen families and promote positive coping and interpersonal skills; however, there are negative impacts as well, especially in single family homes where the mother is the only caregiver.
Secondary health conditions, such as depression, psychological distress, and declines in physical health are more common among parents and siblings of children with disabilities. These conditions result, in part, from the increased financial strain, uncertainty about the future, social isolation, and fatigue often associated with meeting the child's care needs. A child's disability can place psychological and social burdens on both child and family.
People are healthiest when they feel safe, supported and connected to others in their families, neighborhoods, workplaces and communities. Fear or perceived negative attitudes, more practical obstacles such as lack of transportation or lack of income, or most importantly, the lack of encouragement from extended family and community organizations all contribute to decreased community connectedness for children with disabilities and their families.
Outreach to persons with disabilities especially by extended family members and other groups such as, local churches, synagogues, mosques, and other place of worship, can make a real difference in the lives of persons with disabilities, enabling them to participate in family and community life and to achieve a higher level of satisfaction with their lives.
Families have identified supportive and unsupportive behaviors at the extended family, community and service provider levels. At the extended family level having inadequate contact or involvement with the child or family, inadequate emotional support, lack of understanding of child's condition or treatment, insensitive or invasive comments and blaming parents for the child's condition were the 5 most common unsupportive behaviors. At the community level, family acquaintances were described as unsupportive by their insensitive comments, inadequate tangible support, withdrawal of contact or friendship, and avoidance of talking about or minimizing the child's condition.