Abstract:

Purpose Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers’ burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers’ support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

Methods CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.

Results Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings, or other relatives. The main support needs were: Knowing what to expect in the future and Dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses’ experiences: CSNAT-I was relevant and became an eye opener; Nurses’ experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabledchange.

Conclusion Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

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