Background:
Allogeneic haematopoietic stem cell transplantation (allo-HSCT) is associated with complex quality of life issues and unique challenges for not only transplant recipients but also their carers. At our transplant centre, having a carer is a basic essential requirement to be considered for allo-HSCT. With increasing survival rates and numbers of allo-HSCT transplants performed each year, there is a need to extend our service delivery to the carers’of HSCT recipients. Studies of allo-HSCT have indicated that the presence of an active and effective carer(s) is critical to the quality of life and outcomes of transplant recipients. To date, the primary focus of HSCT service provision has been directed towards recipients with the needs of carers often inadequately addressed.
Aims:
To develop and implement a targeted carer’s support program to better identify and address the carer needs of HSCT recipients.
Methods:
Carers >18 years of age who were caring for a recipient, either undergoing or completed their first HSCT, for haematologic malignancies or non-malignancies between 2010 and 2015 were invited to participate. The one-day program forums were developed and delivered by our multidisciplinary (MD) transplant team. A qualitative methodology was used based on participant survey to elicit the satisfaction and utility of a carers support program.
Results:
A total of 23 carers participated in the HSCT pilot Carer’s Support Program. Participants included 76% females and 24% males. Median age of carers was 42 years (range 29-64). Participants rated the forums as highly effective in managing their own emotional distress, being made aware of the importance of self-care and of the external support options available.
Conclusion:
Although the concept of carer support is not new in HSCT recipient care, it continues to remain under-addressed. Preliminary results of this pilot HSCT carer’s support program demonstrate the value of transplant centres offering targeted carer’s service delivery, to better address the needs of carers. The strength of implementing our program was in ensuring the involvement of MD team members towards a more longterm strategy to improve service delivery.