Assessing Breast and Cervical Cancer Stigma and Piloting a Mitigating Intervention in Rwanda
Assessing Breast and Cervical Cancer Stigma and Piloting a Mitigating Intervention in Rwanda
This study aims to assess breast and cervical cancer stigma and pilot a multi-modal intervention to mitigate stigma among patients, caregivers, and community health workers in Rwanda. The elements include resilience training (patient), support group (caregivers), or exposure to survivors by video and in-person (patient, caregivers, and community health workers), and educational curriculum (community health workers).
The aim of this research study is to pilot components of an intervention to reduce the impact breast and cervical cancer stigma on patients and caregivers to improve the patient care experience and patient outcomes. The study seeks to achieve two goals. The first, to understand how stigma (negative attitudes, shame, or discrimination) related to breast and cervical cancer shows up in Rwanda-for patients, within families and caregiving relationships, and across the healthcare system. To do this, the team will use a combination of surveys and in-depth conversations to capture both numbers and lived experiences.
The second study aim is to co-develop culturally appropriate, community-informed interventions that translate research findings into practical supportive care strategies for cancer patients and caregivers. A Community Advisory Board comprising survivors, caregivers, community health workers, nurses, social workers, mental health professionals, and an oncologist will guide intervention development and implementation. Using a community-based participatory approach and intervention mapping, the team will design the RISE program, which includes: (1) resilience skills training for patients delivered in four group sessions aligned with chemotherapy cycles; (2) peer support groups for caregivers addressing caregiving burden, emotional well-being, stigma, communication, and community resources; and (3) survivor-informed videos presenting lived experiences and coping strategies.
Approximately 1,086 participants will be enrolled.
Aim 1 Inclusion and Exclusion Criteria Aim 1 Interviews and Surveys
Individual interviews and surveys:
Potential patients will be identified by the clinical team from physical and electronic registries of patients. Potential participants will be screened for eligibility by the study research assistant.
Inclusion Criteria
Exclusion Criteria
Interpersonal interviews and surveys:
Caregivers of the potential patients will be identified from the potential patients. Potential patients will be identified by the clinical team from physical and electronic registries of patients. Potential participants will be screened for eligibility by the study research assistant.
Inclusion Criteria
Exclusion Criteria
Institutional Focus group:
An official participation letter will be sent from BL2TH to leaders of the preselected facilities. Interested participants will be encouraged to contact the study team. Potential participants will be invited by their hospital/center leadership and screened for eligibility by the study research assistant.
Inclusion Criteria
Exclusion Criteria
Institutional surveys:
Formal participation invitation will be sent to the Rwanda Medical and Dental Council, National Council of Nurses and Midwives, and the Rwanda Allied Health Professions Council. Potential participants will be screened for eligibility electronically and informed consent obtained electronically.
Inclusion Criteria
Exclusion Criteria
Aim 2 Inclusion and Exclusion Criteria Aim 2 Intervention pilot (patient, caregivers and community health workers)
Patient and Caregiver Pilot:
Inclusion Criteria
Exclusion Criteria
Community Health Worker Pilot:
Inclusion Criteria
Exclusion Criteria
temidayo_fadelu@dfci.harvard.edu+1 617-632-3779
erugengamanzi@ughe.org+250 783 849 767