Abstract
The paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion.
The study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires.
Forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge.
Young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up service.