Formal and Informal Support for Parents of Children With Severe Intellectual Disability

Abstract

Parents of children with severe and profound intellectual disabilities (SPID) experience an enormous burden of care, which affects family function and well-being. Formal and informal support can contribute to the family's functioning. This study explores perceived support among these parents. Sixty Israeli parents of children with SPID completed questionnaires on (1) Family quality of life (FQoL); (2) Shame and guilt; and (3) Parental stress. They were also asked to respond to open-ended questions regarding their experiences with formal and informal support. Parents' statements underwent inductive content analysis. Parents rated the importance of formal support as very high, yet the attainment of the domains was rated below average. The importance of informal support was rated high, and its attainment was above average. The child's medical challenges increased parental personal responsibility, which mediated higher levels of parental shame, guilt, and stress. Informal, but not formal support, mitigated this effect, reducing the association between medical problems and parental stress and guilt. Parents expressed the need for reliable and accessible support systems to ensure stability for the child and family. Disability-related services need to be strengthened to better meet the expectations and needs of parents of children with SPID. Professionals should assess and encourage the utilization of extended family and community resources.