Health satisfaction and family impact of parents of children with cancer: a descriptive cross‐sectional study

摘要

Background The impact on parents of coping with a child who has cancer can be both severe and multifarious. Considerable distress persists throughout the treatment phase, persisting even after completion of treatment with heightened anxiety and stress associated with thoughts of recurrence or relapse. Aim The purpose was to investigate the links between parents’ satisfaction with the health care offered to their child with cancer and the impact on families of caring for such a child (including their health‐related quality of life) in a Middle Eastern country. Study design A descriptive, correlational, cross‐sectional design was adopted. Arabic versions of parent‐completed, validated instruments were completed by 113 parents whose child had cancer. Results Family relationship was found to be the best functioning domain, and daily activities were seen to be the poorest. In general, parents expressed satisfaction with their child's health care, but inadequate attention had been paid to their emotional needs. Cases in which children were reported to exhibit more emotional and behavioural problems correlated with greater negative impact on the family and disrupted family functioning. Discussion Parental quality of life was more severely affected than family quality of life. This results from mothers taking up most of the caregiver burden, and the impact on mothers was significantly greater than that on fathers. Children were protected from stress and anxiety by their mother. This burden on mothers resulted in deficits in emotional, social and physical functioning. Practice and policy implications Nurses and other health professionals should redress the balance between family‐centred care strategies and child‐centred approaches. Effort is needed to provide psychological support to parents by ensuring adequate preparation of staff, especially nurses, to recognise need and provide support in a therapeutic environment. Support may be needed for years after the diagnosis. This is a health professional role that may currently be neglected, and for which training is essential.