Analysis of nurses’ involvement with families of children with severe motor and intellectual disabilities in their terminal stages

Abstract

 Aim: The aim of this study was to clarify nurses’ involvement with families of children with severe motor and intellectual disabilities in their terminal stages, and to identify implications for nursing practice.

 Methods: A qualitative descriptive research method was used. Study participants comprised eight nurses with experience in the care for families of children with severe motor and intellectual disabilities in their terminal stages. Individual semi-structured interviews based on an interview guide were used to collect data.

 Results: Six categories were extracted from interview data as ways in which nurses were involved with families of children with severe motor and intellectual disabilities in their terminal stages: respect the parents, be mindful of the parents’ peace, be close to the child with the parents, maintain the family’s state of being, leave proof that the child was alive, and adjust the care for the family in conjunction with the medical team.

 Conclusion: Nurses’ involvement with families of children with severe motor and intellectual disabilities in their terminal stages is important from the perspective of family centered care.