The experiences and needs of parents of children with cerebral palsy in coping with the child’s disease

Abstract

Cerebral palsy, which occurs in two to three out of every 1000 live births, has multiple aetiologies resulting in brain injury that affects movement, posture, and balance. A family’s adjustment to the child’s cerebral palsy is a challenging process, and parents often feel that they have not received adequate explanations on how to care for their child. To ensure the best possible quality of life for the child, the whole family must be taken care of. Supporting family members and understanding their needs facilitates the delivery of high-quality, patient-centred nursing care. The aim of the research was to explore and analyse the experiences and needs of parents of children with cerebral palsy in coping with their child’s disease. The research was qualitative, empirical, and descriptive. Data were collected through semi-structured interviews and analysed using an inductive content analysis method. The interviews were conducted between August and October 2022, with eight parents participating in the research. Parents’ experiences and needs in coping with their child’s disease relate to adaptation and economic challenges, family dynamics and support, healthcare experiences, health and well-being, information and accessibility, as well as support systems and assistance. Parents require information and guidance regarding various therapies and support services, along with material support. They need time for themselves and opportunities for social interaction with other parents. Support groups for parents of children with a similar diagnosis would be beneficial.

Keywords

• nursing
• cerebral palsy
• coping
• child
• need
• experience