Parents’ needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study

Abstract

Introduction: Parents’ needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents’ needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement. Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child’s death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS). Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p =.001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p ≤.050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p =.040) and from psychologists (p =.011) and social workers (p =.012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support. Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.