Experiences and meaning of a follow-up meeting to bereaved parents in paediatric oncology: a qualitative study

Abstract

Background: Parents who have experienced the death of a child from cancer have unique bereavement needs. To support these bereaved parents a follow-up meeting with the professional caregivers of the deceased child is often scheduled in the Netherlands. Current practice suggests both parents and professionals emphasise an improvement of follow-up meetings in paediatric oncology is needed.

Aim: To explore the experiences of bereaved parents at follow-up meetings with healthcare professionals in paediatric oncology, and what this follow-up meeting means to bereaved parents.

Method: An explorative qualitative design was conducted with semi-structured interviews and a thematic analysis. The sample was composed of parents whose child had died from any type of cancer in the Netherlands.

Results: Seven themes were identified through interviews with thirteen parents (four couples simultaneously and five mothers individually). Parents described their different stages of the grieving process and their emotions at the time of the follow-up meeting, which influenced their feelings of readiness. Feelings of readiness were also influenced by the valuable and burdensome aspects parents expect of the follow-up meeting. Most parents experienced the follow-up meeting as the last possibility to ask questions and be reassured they did everything to save their child. Additionally, during the conversation, parents and professionals retrieved memories of the child. Many parents described the possibility to provide feedback during the follow-up meeting and some parents received positive feedback that reassure them as having been a good parent. Most parents thought the conversation offered closure.

Conclusion: Parents have a variety of expectations, intentions and experiences of the follow-up meeting. Parents asked unresolved questions, sought reassurance, wanted to continue contact with the professionals and experience that their child mattered. Taking these differences into consideration, professionals should try to recognise the individual needs of parents and tailor the follow-up meeting accordingly.