"Togetherness in loneliness" - experiences of a group activity for families with a child suffering from cancer as described from the parents' perspective.

Abstract

When a child is afflicted by a life-threatening disease, it places a huge burden on the family. To gain a deeper understanding of parents' experiences of psycho-social support in a group activity for families with children and adolescents suffering from cancer. Data were collected by means of focus group interviews with 10 parents from eight families with children treated for cancer during the period 2011-2017. The interviews were transcribed and analysed in accordance with qualitative content analysis. An overarching theme"Togetherness in loneliness" emerged, highlighting the importance of sharing experiences, based on the main categories: "a clearing house" and "a meeting place". A clearing house was described as a place for sharing experiences on equal terms and a short cut to care contacts. A meeting place was depicted as a temporary home, a place for recuperation, but that sharing also had a cost. The results revealed that the parents of children suffering from cancer experienced the group activity for such families as an important support during the treatment period. The group served as an arena for mutual support and exchange of experiences, but it was also an easy way for the participants to access psychosocial support at an early stage of the cancer treatment. There was a risk that the participants would be unable to cope with sharing the anxiety and setbacks experienced by others, something that might be difficult to foresee when joining the group.