Experiences of Families who care for respiratory-dependent children

The current trend in healthcare is to discharge respiratory-dependent children from hospital as soon as their conditions are stabilised. Phenomenological in its design and using qualitative methodologies, this book explores the experiences of five mothers, living and caring for their children requiring home respiratory support in Coventry. Four emerging themes from this work highlight positive and negative interactions between parents and health and social care professionals: (1) Parents’ varied knowledge about their child’s conditions and care management. (2) Inadequate information provided to parents for the management of their children in hospital and/or following discharge and health professionals’ lack of communication skills which sometimes negatively impact on their relations with already anxious parents. (3) Poor support systems with little information on available support, for parents who are already worried about long-term expectations owing to their children’s conditions. (4) Mothers are the primary carer for children in the family. A designated key worker is recommended to serve as a pivotal first contact point between parents and service providers, in co-ordinating the services required by families.