When a parent is affected by a life-threatening illness : Exploring children’s and parents’ needs for support

Abstract: This thesis explored the needs and preferences for support in families with children when one of the parents is affected by a life-threatening illness. In this thesis a variation of designs were used, from a literature review, to an interview study, a survey, and a long-term follow-up of an intervention. The results show that there are both individual and shared needs and preferences within a family when a parent has a life-threatening illness, and that HCP should adapt their approach to support accordingly. The children preferred practical and emotional involvement in their parent's illness, while at the same time needing respite and a sense of normality. Parents preferred more individualised illness-related information provided by the HCP, as well as more guidance on how to care for and support their children. Both children and parents who lack social support are particularly vulnerable. Therefore, it is important for healthcare personnel to systematically map families' social network. Moreover, continuous support should be offered throughout all stages of the parents' illness trajectory, including the time after death to meet their needs.