Sarah Chehayeb, a PhD student at the Ingram School of Nursing (ISoN), is one of two 不良研究所 recipients of a prestigious 2024-25 Cole Fellowship to promote research on pediatric and young adult leukemia and lymphoma.
Her innovative PhD project is aimed at giving adolescent and young adult leukemia and lymphoma patients 鈥� and their family caregivers 鈥� the essential knowledge and self-management skills needed to improve outcomes and substantially reduce symptoms and risks after undergoing an allogeneic (using donor stem cells) bone marrow transplant (BMT). 鈥淭hese immunocompromised patients are at high risk of serious complications, side effects, hospitalization, or death in the first 100 days after the procedure,鈥� explains Chehayeb (PhD鈥�27).
鈥淲hen discharged after about 30 days in the hospital, patients and their families receive a long list of instructions, which can be overwhelming, and bear the brunt of responsibility for self-managing the consequences of a bone marrow transplant (BMT) daily over the next 70 days. Caregivers report they need more help managing their own and their patients鈥� symptoms,鈥� she says.
In Chehayeb鈥檚 study, patients, caregivers and the healthcare team are co-designing and developing a self-management support intervention following BMT and will test its feasibility and acceptance. This co-design method, called Experienced-Based Co-Design (ECBD), is based on learning from the experiences of patients, caregivers, and healthcare staff. 鈥淲e鈥檙e holding workshops with adolescents, young adults and their caregivers who have been through the entire process, and the BMT healthcare team. Self-management is very personal, and participants share ideas about the kinds of help they would want and need,鈥� she adds.
鈥淭he goal is to give the patients and their family caregivers a sense of empowerment, where they feel in control, and know what to do when providing complex care at home,鈥� says Chehayeb, who is supervised by Associate Professor Sylvie Lambert (BScN鈥�00, PhD鈥�08), who holds the Canada Research Chair in Illness Self-Management Support Interventions for Patients and their Family Caregivers, and is associate director of research at the ISoN.
Hands-on nursing experience with leukemia patients in Beirut
Chehayeb, who was born in Montreal and grew up in Lebanon, brings to the project invaluable experience caring for blood cancer patients and training nurses to educate patients in post-transplant self-management. As a newly graduated nurse in Beirut, she worked directly with leukemia and lymphoma patients before, during and after undergoing bone marrow transplants at the American University of Beirut Medical Centre (AUBMC), a leading hospital in the region.
鈥淚 had four years of extremely hands-on experience working with this patient population and their family caregivers in both inpatient and outpatient oncology units. I saw what these patients were going through, their struggles, their fears and their anxiety about how challenging it would be to take care of themselves at home. I then chose to do research into effective patient self-management,鈥� says Chehayeb. During her MSc in Nursing studies at the American University of Beirut, she developed a project focusing on better preparing nurses to optimize self-management strategies among post-BMT patients.
She developed a 12-session training program to enable hematology oncology/BMT nurses to identify patients鈥� learning needs and begin educating them during hospital admission on how to manage symptoms post-transplant and improve self-care at home. 鈥淲hen I finished my master鈥檚 in 2022, I wanted to continue this work and pursue a career in research and education. I thought of moving back to Montreal and applied to 不良研究所, which is very well known in Lebanon and internationally,鈥� says Chehayeb.
Knowledge gap in self-care support for young blood cancer patients
There is a knowledge gap in creating self-management support programs for adolescents and young adults who undergo BMTs and their caregivers. Chehayeb benefits from her supervisor鈥檚 specialized expertise, while leading the first study in Canada to use EBCD for a self-management support intervention for this special patient population. 鈥淧rof. Lambert has a lot of experience developing and testing self-management interventions for patients facing cancer and their caregivers, using innovative trial design methods. She is an amazing mentor and has helped me understand the importance of integrating caregivers into the design of self-care interventions,鈥� she adds.
Winning a Cole Fellowship has enabled Chehayeb to accelerate her research and broaden her network. 鈥淚鈥檓 very appreciative of this fellowship and the financial support, which allows me to focus on my PhD project for the next two years. Professionally, it also gives me opportunities to meet and collaborate with leading people and peers in the fields of oncology and self-management interventions,鈥� says Chehayeb, whose PhD proposal and research interests were introduced at the Cole Foundation Research Celebration Day in early May, and she presented research posters at the International Behavioural Trials Network Conference in Montreal in May, and the Canadian Doctoral Nursing Network Conference in Regina in June.
The Cole Fellowship program has supported more than 230 leukemia and lymphoma researchers in labs and hospitals situated in the Greater Montreal area through collaborations with 不良研究所, Universit茅 de Montr茅al, and the INRS-Institut Armand-Frappier Research Centre.
Effective self-management can reduce complications and hospitalizations
Young leukemia and lymphoma patients often face many physiological challenges and setbacks in the first couple of months after a BMT 鈥� such as infections, gastrointestinal complications, graft versus host disease side effects and cancer relapse 鈥� which can lead to hospital readmission. They may also experience psychological symptoms such as mood swings, depression, anxiety, and PTSD (Post-Traumatic Stress Disorder).
Studies have demonstrated, however, that effective self-management behaviours and self-care skills acquired by patients and caregivers can lessen the adverse consequences of these and other cancers, and their treatments.
Chehayeb鈥檚 co-designed self-management intervention aims to support patients and their caregivers in learning useful and relevant self-management behaviours and self-care skills post-transplant: taking infection precautions, adhering to medication, following a specific nutritional diet, doing routine blood tests, anticipating complications, addressing side effects, recognizing and seeking appropriate treatment for anxiety, depression, or PTSD, and knowing when to contact the healthcare team. The program could potentially include a video series, online modules, and/or a phone app, based on input and feedback from users and a BMT multidisciplinary team.
鈥淚 want to help these patients as much as I can by developing and testing a self-management support program that is feasible, accepted and shown to be effective,鈥� says Chehayeb. 鈥淭he potential benefits could include fewer hospitalizations, early detection of complications, reduced symptom severity, and significant improvements in quality of life for patients and their caregivers.鈥�
With thanks to the Cole Foundation.