Family caregivers\u2019 support needs during allo-HSCT\u2014a longitudinal study

Annika M Kisch,Anette Alvariza,Kristofer Årestedt,Karin Bergkvist,Jeanette Winterling

doi:10.1007/s00520-020-05853-8

Abstract

PurposeThe study aimed to explore family caregivers’ support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome.MethodsThis longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later.ResultsThe two top support needs prior to allo-HSCT were ‘knowing what to expect in the future’ (79%) and ‘dealing with your own feelings’ (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up.ConclusionThe findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

Highlights

Allogeneic hematopoietic stem cell transplantation is a treatment mainly for haematologicalInstitutet, Stockholm, Sweden 4 Sophiahemmet University, Stockholm, Sweden 5 Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden 6 Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden 7 The Research Section, Region Kalmar County, Kalmar, Sweden 8 Medical Unit Hematology, Theme Cancer, Karolinska UniversityHospital, Stockholm, Sweden malignancies
The aim of this study was to explore family caregivers (FC) support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome
Prior to allo-HSCT, the three top support needs enabling the FC to care for the recipients, i.e. enabling support needs, were as follows: ‘knowing what to expect in the future’ (79%), ‘understanding your relative’s illness’ (66%) and ‘knowing who to contact if you are concerned’ (63%)

Summary

Introduction

Allogeneic hematopoietic stem cell transplantation (alloHSCT) is a treatment mainly for haematological. In Europe, around 17,000 allo-HSCTs are performed per year and in Sweden around 280 [1]. Most recipients of allogeneic hematopoietic stem cell transplantation (allo-HSCT) need help with the activities of daily life during the transplantation trajectory, and family members more or less willingly become caregivers. Research on FC of HSCT recipients has mainly focused on their experiences [6,7,8], quality of life [6], psychological distress [7, 9,10,11] and caregiver burden [7, 12]

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