Caring for a child with cancer: a longitudinal perspective

Aims. This paper reports a study to evaluate caregiving demands among mothers and fathers of children with cancer, parents' well-being, and how the parents perceive the health status of their child over a period of 18 months. Background. Cancer among children has psychological impact on all family members. Most previous research has focused on distress, coping patterns and social support, and less is known about how parents are dealing with the illness experience over time. No study was found that evaluated caregiving on a daily basis, or the impact of the cancer on wellbeing and perceptions of health within families. Methods. Data were collected between 1999 and 2001. Parents of 26 Icelandic children under 18 years with cancer completed questionnaires about caregiving activities, general wellbeing and health perceptions. Descriptive statistics and Repeated Analyses of Variance were conducted at baseline, 12 and 18 months. Results. The most time-consuming and difficult caregiving activities for both mothers and fathers were giving emotional support to the child with cancer, and to other children in the family. Mothers also found it difficult and time-consuming to manage behavioural problems and to structure and plan activities for the family. Fathers found it difficult to manage work and organize care for the child at the same time, and to give their partner emotional support. When evaluated over time, mothers' caregiving demands differed statistically significantly from fathers', and fathers' caregiving demands and health perceptions changed statistically significantly over the 18 months of the study. Conclusion. These findings underline the long-term impact of children's cancer on their families. Interventions focusing on emotional support, parents' wellbeing, and how families perceive the health of their child with cancer might benefit the family as a whole.