The caregiver experience of haematopoietic stem cell transplant for haematological malignancy within the provincial New Zealand setting.

Abstract

Background Haematopoietic stem cell transplant (HSCT) - also known as 'bone marrow transplant' or 'stem cell transplant' - is an intensive treatment which may be used to treat patients with blood cancer such as leukaemia, lymphoma and myeloma. The HSCT process is complex. The treatment carries the risk of multiple physical complications including significant patient morbidity and mortality. Caregivers, who are often the patients' family members or close friends, perform an essential role in supporting the care and recovery of patients undergoing HSCT treatment. Due to its complexity, HSCT is only provided at tertiary hospitals located in main city centres, which means patients and their caregivers living in provincial New Zealand must relocate in order to access HSCT treatment. HSCT can be a demanding process, not only for the patient, but also their caregiver. Caregivers can experience significant psychological, physical, and social challenges as a result of the HSCT experience.

Aim The aim of this research was to explore the experience of haematopoietic stem cell transplant (HSCT) from the perspective of the caregiver within the provincial New Zealand setting. The purpose of this study is to: i) contribute to an improved understanding of the HSCT caregiver experience for those who live in provincial New Zealand. ii) provide information to underpin the future development of evidence based nursing interventions, and models of care across the multidisciplinary health care team, in order to address the specific needs of HSCT caregivers. iii) identify potential areas for further research.

Research Design The research design is a qualitative descriptive study using interviews underpinned by a narrative inquiry methodological approach. A sample of eight participants who fulfilled the role of caregiver to a patient undergoing HSCT were interviewed within the time period of six months to five years post-transplant. Data analysis examined the interview narrative, utilising both a narrative and thematic analysis approach.

Study Findings Eleven themes emerged from the participants' narratives describing their caregiver experience. The notion of the experience as a journey, was woven throughout the caregiver narratives, and emerged as an overarching theme of the study findings. A degree of inter-relatedness was identified between the themes, and highlights the complex challenges faced by caregivers during the HSCT experience. The findings reveal the breadth of the caregiver journey, and how the experience continues to influence the lives of caregivers across the HSCT trajectory during the weeks, months and years following transplant. The findings illustrate the broad impact which relocation exerts upon the HSCT caregiver experience within the provincial New Zealand context. Furthermore the findings provide compelling insight into the depth of responsibility caregivers perceive they have.

Discussion The study findings convey the scope of the caregiver role, and the impact the HSCT experience has upon the lives of caregivers. The experience of relocation has wide reaching practical and emotional implications for caregivers, who find themselves disconnected from their everyday lives and separated from the support of family and friends. Caregivers need to balance the duty of caring for the HSCT patient, with a range of other commitments which occur in their everyday lives 'outside' the immediate transplant setting. The intensity and selflessness of caring for another person can result in caregivers neglecting their own self-care needs, which places them at risk of becoming overwhelmed with the responsibilities associated with the caregiver role. Therefore it is essential that health care teams and support agencies are aware of the significant impact which HSCT can exert upon the lives of caregivers, in order to recognise and plan services to address the support needs of this vulnerable population. The study findings express a clear message for health services to increase their focus toward the provision of information and support strategies aimed specifically at HSCT caregivers. The study findings will be made available to key stakeholders, to provide evidence based insight which may be used to inform the development of nursing interventions, and comprehensive strategies across the multidisciplinary health care team, which are tailored to meet the needs of HSCT caregivers in the New Zealand setting.