Spiritual experiences of parents and caregivers who have children with disabilities or special needs

Despite the fact that faith has been described as a universal concern, and despite the realization that the presence of social supports is an essential element in successful coping, there has been no systematic examination of the quality of spiritual networks important to families impacted by childhood disability. There is also little understanding of how spirituality in children influences the lived experience of faith in the adults who care for them. Findings reported here come out of a larger existential phenomenology study that examined the lived experience of parents or caregivers who sought to obtain formal religious education for their children with special needs. Participants included 26 parents/caregivers representing 44 children with special needs and 15 different faith traditions. Narratives indicated that many clergy and members of faith communities either devalue or fail to recognize the spiritual lives of disabled children. This lack of recognition was associated with participant disillusionment or crises of faith and a sense of alienation from potential sources of emotional support. In contrast, those participants whose children were welcomed reported feeling sustaining support and strengthened faith. No parent or caregiver perceived nurses as having an awareness of or interest in spirituality within families of children who have special needs.