Haematopoietic stem cell transplantation (HSCT) is a complicated and high-risk procedure used to cure disease or stop the spread of disease in a range of cancers. HSCT carries a high incidence of mortality and is associated with distressing short and long-term side effects. In addition, patients remain at risk of recurrence or mortality years after transplantation. Therefore, patients undergoing HSCT have been found to experience significant emotional and psychosocial distress because of the trauma associated with treatment. The literature suggests that about 50% of HSCT patients will experience clinical levels of distress. Carers and family members play an important role in caring for these ill patients in the short and long-term. Major role changes and financial stressors are experienced in many families, adding to the burden of care. However, very little is known about the rates of psychopathology in carers of HSCT patients.
Due to the arduous nature of HSCT, psycho-educational programmes have been developed by major transplant centres and hospitals in order to provide HSCT patients and their families with information on the treatment process, side effects, risks, and long-term outcomes. Research on patient education in oncology has shown that providing patients and carers with information about their illness and treatment reduces anxiety and distress. To date, there have been no empirical evaluations to support the use of education programmes for HSCT patients. While it could be assumed that information would be helpful in reducing anxiety and depression in HSCT as it is in oncology generally, the information provided to these patients is usually more confronting and therefore, may be less reassuring. Thus, it is not known whether providing patients with education about HSCT reduces patient and carer distress or whether it might actually increase adverse outcomes.
The aim of the present study was to evaluate the rates and correlates of distress in carers and patients and examine the effect of a psychoeducation programme for patients undergoing HSCT and their carers on knowledge, distress, information satisfaction, social support and caregiver burden. A randomised control trial was conducted to provide empirical data in relation to the latter aim. The following hypotheses were proposed. Firstly, it was hypothesised that patients and carers who received the education programme would have higher levels of knowledge, not evidenced in a group waiting to receive the programme. Secondly, it was hypothesised that the education program would not lead to increased anxiety and depressive symptoms. Thirdly, patients who know more about their condition would be the least distressed. As predicted, this study found high levels of distress, particularly in carers. Higher patient distress was related to having more concern about one’s illness and experiencing more symptoms. Education was effective in increasing patient and carer knowledge. Importantly there were no adverse effects of knowledge and greater patient knowledge following the education program was associated with less distress, although there was no direct effect of education on distress. Future research should aim to identify what aspects of the education program are helpful to patients. Finally, support interventions such as CBT are needed to help patients and carers, in particular, cope with the high levels of distress inherent in the HSCT experience.