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Breast Cancer Survivor Advocacy at a University Hospital: Development of a Peer Support Program with Evaluation by Patients, Advocates, and Clinicians.

ABSTRACT: Peer-to-peer support programs provide unique psychosocial and educational support for breast cancer patients. A Patient Survivor Advocacy (PSA) program was developed by the University of Wisconsin Breast Center (UWBC) to provide support for newly diagnosed patients from peers who had completed primary treatment. In this study, we evaluated patient, advocate, and clinician experience with the PSA program. A program matching volunteer peer advocates at least 1 year removed from primary treatment with newly diagnosed patients was developed. Peer advocates were recruited from the practices of UWBC clinicians and received in-person training on six dimensions of peer advocacy. Trained advocates were then paired based on demographic and medical history with new patients referred to the program. Survey assessment tools were distributed to assess peer advocate and patient satisfaction, as well as clinician experience. Forty patients have been matched with seven advocates, with contact largely by email (53 %) or phone (36 %). Patients and peer advocates reported satisfaction with the program. The majority of patients (92.9 %) reported that the program was "helpful" and that they would recommend the PSA program to another woman with breast cancer. All peer advocates (100 %) responded with a sense of achievement in their advocate roles. Clinicians noted challenges in referral to the program. Peer advocates can provide key emotional and psychosocial support to newly diagnosed breast cancer patients. The peer advocate, patient, and clinician feedback collected in this study will inform the future development of this program at our and peer institutions.

SUBMITTER: Mirrielees JA

PROVIDER: S-EPMC4837082 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Breast Cancer Survivor Advocacy at a University Hospital: Development of a Peer Support Program with Evaluation by Patients, Advocates, and Clinicians.

Mirrielees Jennifer A JA Breckheimer Kayla R KR White Teresa A TA Denure Deb A DA Schroeder Michelle M MM Gaines Martha E ME Wilke Lee G LG Tevaarwerk Amye J AJ

Journal of cancer education : the official journal of the American Association for Cancer Education 20170301 1

Peer-to-peer support programs provide unique psychosocial and educational support for breast cancer patients. A Patient Survivor Advocacy (PSA) program was developed by the University of Wisconsin Breast Center (UWBC) to provide support for newly diagnosed patients from peers who had completed primary treatment. In this study, we evaluated patient, advocate, and clinician experience with the PSA program. A program matching volunteer peer advocates at least 1 year removed from primary treatment w ...[more]

PMID: 26477478

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Project description:Social marginalization and criminalization create health and safety risks for sex workers and reduce their access to health promotion and prevention services compared to the general population. Community empowerment-based interventions that prioritize the engagement of sex workers show promising results. Peer-to-peer interventions, wherein sex workers act as educators of their colleagues, managers, clients and romantic partners, foster community mobilization and critical consciousness among sex workers and equip them to exercise agency in their work and personal lives.A pilot peer health education program was developed and implemented, with and for sex workers in one urban centre in Canada. To explore how the training program contributed to community empowerment and transformative learning among participants, the authors conducted qualitative interviews, asked participants to keep personal journals and to fill out feedback forms after each session. Thematic analysis was conducted on these three data sources, with emerging themes identified, organized and presented in the findings.Five themes emerged from the analysis. Our findings show that the pilot program led to reduced internalized stigma and increased self-esteem in participants. Participants' critical consciousness increased concerning issues of diversity in cultural background, sexual orientation, work experiences and gender identity. Participants gained knowledge about how sex work stigma is enacted and perpetuated. They also became increasingly comfortable challenging negative judgments from others, including frontline service providers. Participants were encouraged to actively shape the training program, which fostered positive relationships and solidarity among them, as well as with colleagues in their social network and with the local sex worker organization housing the program. Resources were also mobilized within the sex worker community through skills building and knowledge acquisition.The peer education program proved successful in enhancing sex workers' community empowerment in one urban setting by increasing their knowledge about health issues, sharing information about and building confidence in accessing services, and expanding capacity to disseminate this knowledge to others. This 'proof of concept' built the foundation for a long-term initiative in this setting and has promise for other jurisdictions wishing to adapt similar programs.

Project description:BackgroundPeople who are unhoused, use substances (drugs and/or alcohol), and who have mental health conditions experience barriers to care access and are frequently confronted with discrimination and stigma in health care settings. The role of Peer Workers in addressing these gaps in a hospital-based context is not well characterized. The aim of this evaluation was to 1) outline the role of Peer Workers in the care of a marginalized populations in the emergency department; 2) characterize the impact of Peer Workers on patient care, and 3) to describe how being employed as a Peer Worker impacts the Peer.MethodsThrough a concurrent mixed methods evaluation, we explore the role of Peer Workers in the care of marginalized populations in the emergency department at two urban hospitals in Toronto, Ontario Canada. We describe the demographic characteristics of patients (n = 555) and the type of supports provided to patients collected through a survey between February and June 2022. Semi-structured, in-depth interviews were completed with Peer Workers (n = 7). Interviews were thematically analyzed using a deductive approach, complemented by an inductive approach to allow new themes to emerge from the data.ResultsSupport provided to patients primarily consisted of friendly conversations (91.4%), discharge planning (59.6%), tactics to help the patient navigate their emotions/mental wellbeing (57.8%) and sharing their lived experience (50.1%). In over one third (38.9%) of all patient interactions, Peer Workers shared new information about the patient with the health care team (e.g., obtaining patient identification). Five major themes emerged from our interviews with Peer Workers which include: (1) Establishing empathy and building trust between the patient and their care team through self-disclosure; (2) Facilitating a person-centered approach to patient care through trauma-informed listening and accessible language; (3) Support for patient preferences on harm reduction; (4) Peer worker role facilitating self-acceptance and self-defined recovery; and (5) Importance of supports and resources to help Peer Workers navigate the emotional intensity of the emergency department.ConclusionsThe findings add to the literature on Peer Worker programs and how such interventions are designed to best meet the needs of marginalized populations.

Project description:BACKGROUND:Social support is known to reduce risks of postnatal depression (PND) and improve maternal emotional well-being. However, the Asian cultural context is often neglected when appraising maternal needs and mothers' preferences for social support. While many preventive efforts have experimented with technology, professionals, and paraprofessionals in providing social support to mothers in need, most studies determined the effectiveness of their interventions through quantitative measurements of maternal outcomes. Experiences and feedback from both participants and administrators are rarely discussed, especially in an Asian setting. OBJECTIVE:The goal of the research was to evaluate the postnatal experiences of Asian mothers at risk of PND and the perceptions of peer volunteers regarding a technology-based peer-support intervention program (PIP). METHODS:A qualitative semistructured interview was conducted with 20 Asian mothers at risk of depression (10 from the control group and 10 from the intervention group) and 19 peer volunteers from a randomized controlled trial. The PIP included weekly correspondence between peer volunteers and mothers through any telecommunication means over 4 weeks. All interviews were approximately 30 to 60 minutes long, audiotaped, transcribed verbatim, and analyzed using thematic analysis. Study findings were reported according to the Consolidated Standards of Reporting Trials checklist. RESULTS:Two overarching themes comprising five subthemes were generated: postnatal experience (a bouncy ride, a way forward) and evaluation of the PIP (valuable, flexible, and supportive program; building blocks of a good relationship; and lessons learned and the road ahead). Mothers from both the control and interventions groups were generally satisfied with hospital care and the support received from family. They also shared similar breastfeeding challenges and needs for more informed decisions and follow-up support from the hospital. However, mothers who received the PIP tended to have more positive outlooks of their birth experiences. Overall, peer volunteers and mothers involved in the PIP found the PIP useful and expressed satisfaction with the program's flexibility. They also shared their personal takeaways, the qualities of their friendships, and the need for extended correspondence time and recommended outreach to non-at-risk mothers. CONCLUSIONS:The positive endorsement of the PIP by peer volunteers and mothers suggests the success of the PIP in maintaining positive maternal emotional well-being during the postpartum period. With the help of technology, hospitals can easily provide additional peer support to at-risk mothers in addition to existing standard care offered to these mothers. TRIAL REGISTRATION:ISRCTN Registry ISRCTN14864807; http://www.isrctn.com/ISRCTN14864807. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/resprot.9416.

Dataset Information

Breast Cancer Survivor Advocacy at a University Hospital: Development of a Peer Support Program with Evaluation by Patients, Advocates, and Clinicians.

Publications

Breast Cancer Survivor Advocacy at a University Hospital: Development of a Peer Support Program with Evaluation by Patients, Advocates, and Clinicians.

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