Taking control: findings of a prospective study of an educational course for patients with leukaemia

The challenge of coping with a chronic and life-threatening diagnosis such as a haematological malignancy, with the associated repeated, lengthy, and often invasive treatment interventions, can have a profound effect on all aspects of life. Patients and their families not only need information to help them understand the cancer experience, but also need support to generate coping strategies as the demands of the illness and its treatment exceed the individual's resources. Structured psycho-educational interventions, based on a strong informational component that aim to improve participants' adaptation to the disease and cancer situation, are one approach to providing such support. This article presents the findings from a recent prospective evaluation of the Leukaemia Foundation of Queensland's educational support course, Taking Control, which is designed for patients with a haematological malignancy and their families. The aim of this study was to record the participants' understanding of the positive and negative aspects and outcomes of course attendance. This is a prospective study of participants' perceptions of their experience with the 'Taking Control' course during the first half of 1999 (n =35; response rate 74.3%), using an author-designed, self-report questionnaire. The findings indicate that participants experience a high level of satisfaction, gain substantially in terms of knowledge, coping skills, and a positive framework within which to view their illness. Many obtain great value from the opportunity to meet and talk with others in similar situations. This study, which builds on previous retrospective research, affirms that this course has much to offer those who are confronted with the life-altering diagnosis of a haematological malignancy. However, the work also points to the need for special consideration to be given to a consistent minority of participants who will find socialising with their peers difficult whilst they are feeling so vulnerable and who have styles of processing information that can easily lead to 'information overload'. It is anticipated that the discussion of these findings will go some way to providing sufficient information and insight for similar courses to be duplicated, with confidence, elsewhere.