Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study

Abstract

Introduction: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents’ need, opportunity and benefit of support from healthcare professionals and significant others after end of a child’s successful cancer treatment.

Material and methods: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n = 212) up to five years thereafter (T7, n = 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends.

Results: The proportion reporting need of support from healthcare professionals varied between 73% (mothers’ need of support from social workers, T4) and 7% (fathers’ need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers’ and fathers’ need of support from partners, T4) and 27% (fathers’ need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support.

Conclusion: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child’s cancer treatment/transplantation.