Emma Deary, BA

She/Her/Hers
Clinical Research Coordinator
Psychiatry
Medical Oncology, Palliative Medicine, Medical Psychiatry
Peer Support Experiences in Patients with Hematologic Malignancies Undergoing Hematopoietic Stem Cell Transplantation: A Qualitative Study

Principal Investigator: Hermioni L. Amonoo, M.D., M.P.P

Authors: Emma C. Deary, B.A., Elizabeth P. Daskalakis, B.A., Lauren E. Harnedy, B.A., Jeff C. Huffman, M.D., Areej El-Jawahri, M.D., Hermioni L. Amonoo, M.D., M.P.P.
Lay Abstract

Peer support is a unique form of social support where cancer survivors share emotional, social, and practical help based on their own lived experience of illness and treatment. However, there is limited evidence of empirically-based peer support interventions for patients who have undergone hematopoietic stem cell transplants (HSCT). HSCT recipients have unique recovery needs (e.g., prolonged hospitalization, required isolation) and would benefit from the shared experience of patients who endured the same process. This study interviewed HSCT recipients about their knowledge of peer support groups as well as their preferences (e.g., delivery, timing, duration, structure, intended benefits) if they were to join a peer support program. Patients reported that they were eager to receive advice and form relationships with people who experienced HSCTs with the hope they can learn from the experiences of others – a unique resource that complements information from clinicians. Recommendations for preliminary topics to consider include dealing with changing familial relationships, mortality, the sense of isolation during quarantine, and physical effects. Based on feedback from patients, our team also plans to create a pilot version of the peer support group, incorporating participants’ ideas about when in recovery to introduce the intervention and group size.

Scientific Abstract

Background: Peer support entails cancer survivors sharing emotional, social, and practical help with each other based on the lived experience of their illness and treatment. While most interventions for hematopoietic stem cell transplant (HSCT) patients are facilitated by clinicians and individuals without the lived experience of cancer, an empirically based peer support intervention would be a promising supportive oncology intervention in the HSCT population—one with unique recovery needs (e.g., prolonged hospitalization, required isolation) compared to other cancer populations.

Methods: Twenty-three patients ≤6-months post-HSCT completed semi-structured qualitative interviews that covered several domains including knowledge and preference of timing, duration, structure, and intended benefits of a peer support intervention.

Conclusions: Patients reported they were open to receiving a peer support intervention, with 65% of interviewees indicating they want to receive peer support in preparation for the index transplant hospitalization. Patients reported peer support would potentially enrich their treatment and recovery experience through sharing tips to manage quarantine requirements, sharing their challenges with recovery, navigating familial relationships, and sharing advice about dealing with physical effects.

Implications: Findings from this qualitative study would inform the development of a peer support intervention tailored to the needs and preferences of patients who have undergone HSCT.

Clinical Implications
An evidence-based peer support program for patients with blood cancers who have undergone stem cell transplantation has the potential to improve patients’ experiences, recovery, social support and quality of life.

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