The Family Talk Intervention Among Families With Childhood Cancer

Previous research in pediatric oncology and evaluations from the Swedish Childhood Foundation, which focusing on parents', the ill child's, and the siblings' experiences, conclude that much remains to be done regarding support to families affected by childhood cancer. As there is no scientifically evaluated family-centered psychosocial intervention in pediatric oncology in Sweden intervention studies are needed. This present study, described below, fills a part of this knowledge gap. The overall aim is to evaluate a modified version of the Family Talk Intervention (FTI) among families affected by childhood cancer. The goals of FTI are to increase family communication, the family members' resilience, knowledge about the illness, and thereby reduce the family members' long-term psychosocial well-being. Specific aims are to assess the feasibility (Aim 1) and the possible effects of the FTI (Aim 2).

This is an intervention study that primarily focuses on feasibility. It will consist of an intervention group based on families affected by childhood cancer. One of the children in the family, the ill child or the sibling(s), have to be between 6-19 years old and the inclusion of families will be conducted approximately 2-3 months after the cancer diagnosis or relaps. The whole family or a part of the family can participate in the intervention. A minimum is that at least one adult and one child in the age 6-19 can participate. To participate, the family members have to understand and talk Swedish. All families that meet the inclusion criteria at the pediatric oncology unit at Astrid Lindgren Children's Hospital will be asked for participation from September 2018 to May 2019. Nurses at the clinic will identify the families that meet the inclusion criteria's. Information about the study will be sent home to the families by the researchers. One to two weeks later the interventionists will contact the families by phone, inform them about the study, and asked them about participation. Those who are willing to participate will be asked for informed consent.

FTI is a preventive method originally developed for families with a parent with an affective disorder who had children aged 6-18 years. The over-arching aims of the method are not traditional psychotherapeutic intervention. They are instead to support an open, honest and child-centered family communication, and increase understanding of the disease. The intervention also aims to promote parental awareness concerning protective factors (as well as identification of such), such as well-functioning school life, relationships and hobbies among their children. Even if the intervention was developed for families with a parent with depression it has also been tested among families with a severely ill parent who has young children, with positive results. The core elements in the intervention are to: 1) support the families in talking about the illness and related subjects 2) support the parents in understanding the needs of their children and how to support them, and, 3) support the families in identifying their strengths and how to use them. One of the most important principles is respect for the parents. It is important to emphasize the parents' expertise regarding their children.

Since pediatric oncology is yet another context, the intervention has been slightly modified by the research group together with individuals who educate persons in FTI in Sweden. The modified FTI entails six meetings at 1-2 weekly intervals with five extra meetings. The interventionists, who work in pairs, are educated in FTI and have clinical experiences of working with families affected by seriously illness (e.g. as a nurse, counselor, etc.). To support the interventionists a supervisor/educator in FTI will be available. The FTI is manual-based and the interventionists are following a special protocol (here called the logbook). The meetings with the families are held at a place chosen by the families.

Meetings 1-2: include only the parent(s) and focus on the parents' experiences of their situation as well as the consequences of the cancer diagnosis for each family member. During the meeting, each child's situation will be discussed including strengths, problems, worries, the situation in school and with friends, and their social network. The knowledge of the disease will also be a focus. The parent(s) will formulate the goal of the intervention. They can also formulate questions that the interventionist(s) will ask the children in meetings 3.