Adaptation of Coping Together, self-directed coping skills training manuals for patients and caregivers in the context of hematopoietic stem cell transplantation
Hematopoietic stem cell transplantations (HSCTs) have been inpatient procedures due to intensive treatment regimens and a complex recovery process. However, feasibility, cost containment, and patients’ needs and quality of life issues have mandated a shift to outpatient settings. This shift means more intensive involvement of caregivers (CGs). With an increasing number and complexity of role demands, CGs are challenged to perform this role while balancing work and family demands with little or no preparation and support. CGs, therefore, are prone to illness-related distress, unmet needs and coping difficulties that often exceed that of patients. Existing HSCT literature indicates the need for supportive interventions to enable them to continue providing care. Such interventions should involve dyads, namely a combination of patients and their designated CGs; be tailored; enhance adaptive coping while flexible in content, timing and format; and take place during the early recovery phases. Recently, self-directed interventions for adaptive coping, well-being and stress management are found to facilitate coping for cancer patients and CGs alike.
Using the Centers for Disease Control and Prevention’s (CDC’s) Map of Adaptation Process, this multi-step, qualitative descriptive study will adapt the evidence-informed, self-directed Coping Together (CT) manuals to be acceptable in content, process and structure to hematopoietic stem cell transplantation (HSCT) patients, caregivers (CGs) and dyads during the first 100 days post-HSCT at Memorial Sloan-Kettering Cancer Center in New York city. This study poses three research questions: (a) What are the perceptions of HSCT patients, CGs, dyads and clinicians about the content, process and structure of the CT manuals?; (b) What adaptations need to be made of the CT manuals to make it more acceptable for HSCT patients, CGs and dyads?; and (c) What are the perceptions/experiences of HSCT patients, CGs, and dyads with HSCT-modified CT manuals during the first100 days post-HSCT?