Coping when a child has a disability: exploring the impact of parent-to-parent support

Aim To explore the impact of parent-to-parent support when a child is born with a disability. Design The research approach was qualitative. Data were collected retrospectively and were derived from in-depth interviews with parents. The audio-taped interviews were transcribed and then analysed using constant comparative procedures. Setting Scotland. Participants The parents of 63 children born with a congenital upper limb deficiency. Findings The early weeks and months following the birth of their baby was a difficult and emotional time for most parents. Feelings of isolation were common and there was a lot of concern about what the future would hold. Although a certain amount of support was derived from contact with family, friends and health professionals, parents did not generally obtain the level of support that was required from these sources. Contact with other parents of limb-deficient children, however, clearly exerted a powerful stress-buffering influence, providing much needed emotional, social and practical support. Conclusions This study suggests that parents of children with special needs are uniquely qualified to help each other. The challenge is to ensure that health professionals are aware of the potential benefits of parent-to-parent support and provide parents with information about appropriate local organizations/ contacts.