Self-Help Manual for Distress and Quality of Life in the Acute Period of a Haemopoetic Stem Cell Transplant.

Manual group participants received, in addition to TAU, a self-help manual integrated with a tailored 60-minute counselling session pre-transplant. The manual was developed by LK (Clinical Psychologist) and SDB (Social Worker) following a review of the literature, existing cancer psychosocial education fact sheets, other available self-help manuals presenting evidence-based approaches to self-management of psychosocial issues in cancer, and drawing on clinical experience on what was helpful in supporting patients undergoing HSCT. Content was also adapted from a longer self-help manual for breast cancer patients with permission from the author who also read and provided feedback on our manual before this was finalised. The manual covers the following content (with no specific modules to be completed by patients): adjustment and coping, coping strategies, managing hospital stay and physical symptoms of distress/stress, mindful coping with symptoms and side-effects, using your support network, thoughts and feelings and problem solving, common problems for transplant patients, goal setting and recovery stories from transplant survivors. The 60-minute pre-transplant introduction was utilised to build familiarity with the material, explore current knowledge of emotions and how cancer can impact, current stressors, and facilitate practice of manual strategies (e.g. relaxation/visualisation) to help manage emotional distress. A booster session of up to 30 minutes was given at 2-3-weeks post-transplant after completion of study measures. Participants had access to the manual for the entirety of the study (pre-transplant to 3-months post-transplant), with patients working through the manual at their own pace following the introductory session. At 3-months post-transplant, participants were asked to complete a 13-item questionnaire asking via rated items or open-ended questions about their access to psychosocial support and use of the manual. To quantify manual use, participants rated: how much was read using a scale of 0-100%; hours/week spent using the manual; suggestions and set exercises completed (using a scale of None, 1-3, 4-6, 7-9, 10+); extent to which they had discussed content with others (rated using: Not at all, A little, A moderate amount, A lot); and helpfulness of the manual (using a scale of 0 = Not at all; 3 = Very). Participants were also asked four open-ended questions: “If you did not use the book, what were the barriers to using it?”; “what in particular did you find useful about the book”; What if any were the difficulties you had in using the book?”; and “What information would you have liked covered that was not in the book?”.