Experiences and needs of patients facing incurable cancer and their relatives with informal care in psychosocial supporting centres in the Netherlands: A qualitative study

Abstract

Purpose People facing incurable cancer need appropriate informal psychosocial care. This study examines the experiences and needs of visitors of IPSO centers (psychosocial supporting centers for life with and after cancer) for people facing incurable cancer in order to optimize the services provided by IPSO centers for this group. Method Semi-structured interviews were conducted with visitors of IPSO centers, both patients and relatives facing incurable cancer. The interviews were analyzed thematically. Eight themes and two sub themes were identified. Results In total, 18 patients and 13 relatives and bereaved relatives were interviewed. Participants expressed a strong need for understanding, exchanging information and finding ways to fill their days. They appreciated IPSO’s non-obligatory approach and highlight the value of sharing stories with others. Many participants experienced mixed peer groups including both people facing curable and incurable cancer, as uncomfortable. They emphasized the benefit of having separate peer groups for those facing incurable cancer, including able to talk openly about end of life and a deeper sense of understanding and connection. A few participants found these groups inaccessible due to a specific setup. Visitors also experience unpredictability and uncertainty from their illness, making planning difficult, which also affect their IPSO visit. Conclusion IPSO centers play a crucial role in supporting people facing incurable cancer. To best meet their needs, it is essential to facilitate peer contact by organizing special peer groups or by introducing those facing incurable cancer to each other in another way. It is important to take into account accessibility. Further research should focus on individuals who need IPSO’s informal care but are not able to benefit from it due to their burden of disease.