Background:
In a Danish perspective almost 160 children are diagnosed with cancer every year. The incidence is highest among leukaemia and brain tumour, which represent more than half of the cases of childhood cancer diagnoses. In spite of the improvement of successful treatments of childhood cancer, critical late effects among childhood cancer survivors has been identified. These late effects include great risk of physical, psychological, social and school-related problems. The Danish Cancer Society emphasizes a clear lack of systematic and structured follow-ups and psychosocial support to families with a childhood cancer survivor. Therefore, it can be assumed that parents might be an important factor in the handling of late effects and life after cancer. The aim of this study is to identify ideal types of parents of childhood cancer survivors, and to investigate factors that influences parents’ handling of late effects and life after cancer.

Methods:
Eight semi-structured interviews with an average length of 82 minutes were conducted. These interviews included families of childhood cancer survivors, who had been diagnosed with either acute lymphoblastic leukaemia (ALL) (n = 4) or a brain tumour (n = 4). Eight mothers and one father participated in the interviews. All interviews were audio recorded and transcribed verbatim throughout the data collection period. Pseudonyms were assigned to ensure anonymity. Transcripts were imported into NVivo qualitative data analysis software.

Results:
Four ideal types of parents of childhood cancer survivors were identified. The expertise minded parent is formed either as a passive or an active type. Both ideal types have a faith to professionals and their actions or thoughts related to the child’s wellbeing. However, the differences between these are the action of the active type towards more optimal solutions given by other professionals if necessary. The alternative minded parent is inspired of alternative options that are not yet accepted in the Danish conventional health care system. The tradition-bound parent attaches traditions and traditional values great. This includes especially marriage and close families and friends. Finally, the dialogue minded parent includes consideration of feelings in the care of their child. The main characteristic of this ideal type is the feeling of parents being “expert on their own child”. Furthermore, three main themes were identified as factors influencing parents handling of late effect and life after cancer. These include 1) economic resources, 2) lack of knowledge among close families and friends, professionals in the society and structural authorities and 3) execution of power or the lack of from professionals and/or authorities.

Conclusions:
Both individual factors including e.g. knowledge, social network, work and education, and structural factors e.g. professionals and authorities have a major influence on parents’ handling of late effects and life after cancer. Our results highlight the importance of understanding the great problems families to childhood cancer survivors are facing in their everyday life, and the need of more research within this area. This study suggests developing interventions targeting families, professionals and authorities to increase their knowledge and understanding towards late effects among childhood cancer survivors. Also it is necessary to focus on the division of responsibilities among professionals and authorities with the purpose of minimizing problems between these and the families.