Adaptation of Coping Together - a self-directed coping skills intervention for patients and caregivers in an outpatient hematopoietic stem cell transplantation setting: a study protocol

• Published in: BMC health services research Vol. 18; no. 1; p. 669
• Main Authors: Son, Tammy, Lambert, Sylvie, Jakubowski, Ann, DiCicco-Bloom, Barbara, Loiselle, Carmen G
• Format: Journal Article
• Language: English
• Published: England BioMed Central 29-08-2018; BMC
• Subjects: Acquired immune deficiency syndrome; Adaptation; Adaptation, Psychological; Adult; AIDS; Ambulatory Care; Anxiety; Attitude to Health; Behavior modification; Cancer; Caregivers; Caregivers - psychology; Content analysis; Coping; Costs; Disease control; Disease prevention; Dyads; Female; Health services; Hematopoietic stem cell transplantation; Hematopoietic Stem Cell Transplantation - psychology; Humans; Illnesses; Intervention; Interviews; Literature reviews; Male; Middle Aged; Multimedia; New York City; Outpatients - psychology; Patients; Perception; Qualitative Research; Recovery (Medical); Recovery phase; Self-directed intervention; Skills; Stem cell transplantation; Stem cells; Study Protocol; Transplants & implants; Trends; Caregivers; Recovery phase; Coping together; Self-directed intervention; Center for Disease Control and Prevention’s map of adaptation; Coping; Intervention adaptation and refinement; Dyads; Hematopoietic stem cell transplantation
• ISSN: 1472-6963; 1472-6963
• DOI: 10.1186/s12913-018-3483-1

Despite numerous reports of significant distress and burden for hematopoietic stem cell transplantation (HSCT) patients and caregivers (CGs), HSCT-specific coping interventions remain rare. The few in use lack specificity and are often not easily accessible or cost-effective. Whereas the development of new interventions is resource-intensive, theory-informed adaptation of existing evidence-based interventions is promising. To date, no HSCT-specific intervention has relied on a formal adaptation approach.
Using the Center for Disease Control and Prevention's Map of Adaptation, this two-phase qualitative descriptive study seeks to understand the perceptions of HSCT patients, CGs, individually, and in dyads, and clinicians about Coping Together (CT) for the preliminary adaptation (Phase 1), and then explores perceptions of the modified intervention in additional mixed sample (Phase 2). Six to ten participants including outpatients, CGs and dyads and five to seven HSCT clinician participants will be recruited for Phase 1. For Phase 2, 14 to 16 participants including outpatients, CGs and dyads will be recruited. Individual and dyadic semi-structured interviews will take place between 100 and 130 days post-HSCT. Verbatim transcripts will be analyzed using content analysis.
It is paramount to have HSCT-specific supportive interventions that address patients' and CGs' multidimensional and complex needs. The timely involvement of key stakeholders throughout the adaptation process is likely to optimize the relevance and uptake of such tailored intervention.
This study is registered on October 6, 2016 in ClinicalTrials.gov at (identifier number NCT02928185 ).