Academic literature on the topic 'Survivor-centered research'
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Journal articles on the topic "Survivor-centered research"
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Wood, Leila, Dessie Clark, Laurie Cook Heffron, and Rachel Voth Schrag. "Voluntary, Survivor-Centered Advocacy in Domestic Violence Agencies." Advances in Social Work 20, no. 1 (July 30, 2020): 1–21. http://dx.doi.org/10.18060/23845.
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Voluntary, survivor-centered advocacy is a model of practice used in domestic violence organizations; however, more information is needed from the perspective of survivors on how to best facilitate survivor-centered approaches in a voluntary service format. This qualitative study used a thematic analysis to uncover core advocacy approaches from 25 female-identified survivors dwelling in domestic violence emergency shelter and transitional housing programs in two states. Themes revealed that three core approaches aid a voluntary, survivor-centered advocacy model: 1) Establishing a safe base for support, 2) Facilitating access and connection, and 3) Collaboration. Advocacy approaches that emphasize safety, mutuality, and availability of support best engage survivors in voluntary services to address needs and meet goals. Use of a strengths-based approach, psychoeducation, and resource-building contributes to the social and emotional well-being of survivors. Findings indicate community DV advocates should use adaptable advocacy models aimed at service access, connection, and collaborative resource acquisition. Voluntary, survivor-centered models use principals of trauma-informed care, though more widespread use of trauma-informed care (TIC) in voluntary services are needed. Advocates need organizational support to meet survivor needs. Implications for research include the need for fidelity studies and longitudinal research.
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Gill, Alicia. "Survivor-Centered Research: Towards an Intersectional Gender-Based Violence Movement." Journal of Family Violence 33, no. 8 (September 7, 2018): 559–62. http://dx.doi.org/10.1007/s10896-018-9993-0.
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Klemp, Jennifer R., Kristin A. Stegenga, Wendy McClellan, Hope Krebill, Robin Ryan, Mukta Sharma, Jyoti Panicker, Joy M. Fulbright, Becky Lowry, and Eve-Lynn Nelson. "Adult survivors of childhood cancer: Development of a regional transistions program." Journal of Clinical Oncology 31, no. 31_suppl (November 1, 2013): 217. http://dx.doi.org/10.1200/jco.2013.31.31_suppl.217.
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217 Background: With increased survival rates, adult survivors of childhood cancers (ASCC) face lifelong screening and healthcare needs. Given increasing costs and demands across healthcare institutions, there is a significant need for survivorship models that emphasize regional collaboration, transition of pediatric patients to adult care, and focus on survivor-centered outcomes. Specific aims: Over the last two years, the presenters developed and implemented a survivor-centered regional approach to meet ASCC needs, addressing system, provider, and survivor barriers to successful transition and ongoing ASCC care. Methods: The presenters will describe community engagement strategies utilized to build a successful, sustainable survivor-centered approach across the region. The Midwest Cancer Alliance (MCA), the outreach arm of University of Kansas Cancer Center (KUCC), provides a supportive, neutral environment to bridge institution-specific concerns. Interdisciplinary teams from Children’s Mercy Hospital and University of Kansas’ Pediatrics department developed a formal working group with KUCC adult-focused partners. The group has taken an inclusive approach, bringing together pediatric and adult healthcare teams as well as expertise in outreach, patient navigation, telemedicine, education, and evaluation/research. Emphasis will be placed on how the team has prioritized needs-driven deliverables across metropolitan and rural communities. Results: The transitions program has maintained monthly working group meetings; completed a survivor needs assessment and disseminated findings; and initiated a cross-institutional transitions clinic. The team is collaborating on a comprehensive survivorship training approach to educate regional healthcare providers. The presenters will describe the team’s performance improvement processes to monitor outcomes and continuously refine the ASCC/AYA model. Conclusions: Community engagement is an ideal platform for regional program development to meet ASCC survivor needs. Future steps include measuring program outcomes, working toward EHR integration, increasing survivor input, and incorporating education into residency/fellowship training.
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Mertens, Ann, Rebecca Williamson, Jordan Gilleland-Marchak, Lillian R. Meacham, Brooke Cherven, and Paula Edwards. "Evaluation of the adoption, acceptance, and satisfaction of SurvivorLink as a communication tool for pediatric cancer survivors." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 89. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.89.
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89 Background: With the number of cancer survivors growing, focus on early recognition and treatment of late effects is even more imperative for life-long survivorship care. Electronic personal health records (PHR) potentially offer self-management and e-learning support which can empower the survivor, as well be used as a communication tool with healthcare providers (HCP). Methods: We developed a PHR, SurvivorLink (www.cancersurvivorlink.org), as a patient-centered tool to support pediatric cancer survivors, increase knowledge of late effects and survivor care, and promote communication between patients/parents and providers. Measures of success for a sustainable PHR implementation include adoption/use, acceptance, satisfaction and usability. The objectives of this feasibility study are to determine characteristics that predict the success of this PHR tool. An online pre-/post survey was administered to young adult survivors and parents of child survivors who registered on SurvivorLink. Results: Overall, 155 parents and 93 survivors completed the pre-test survey; 75% and 86% respectively have subsequently logged into SurvivorLink after initial registration. Individuals who used this PHR were more likely to be survivors (vs. parents; Odds Ratio (OR): 2.2, 95% CI: 1.1, 4.2). Other demographic variables were analyzed but no significant differences were found between users and non-users. Among users not aware of their need for specialized survivor care at the pre-survey, 52% reported awareness of the need for survivor care in the post-survey (vs 0% of non-users). Parents/survivors also reported high acceptance: 90% would use in the future, 82% stated it would help with advocating for survivor's health; and usability: 96% would recommend to other survivors/parents, 95% would recommend to their healthcare provider. Conclusions: SurvivorLink can improve knowledge around the importance of survivor care, and is both adopted and accepted by survivors/ parents independent of demographic differences. Research is underway to establish SurvivorLink's effectiveness as an advocacy/communication tool for survivor/parent with HCP in the self-management of their healthcare.
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Schwarz, Corinne, and Hannah E. Britton. "Queering the Support for Trafficked Persons: LGBTQ Communities and Human Trafficking in the Heartland." Social Inclusion 3, no. 1 (February 23, 2015): 63–75. http://dx.doi.org/10.17645/si.v3i1.172.
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Human trafficking justice centers on the “Three Ps” model of prevention, protection, and prosecution. While protection and prosecution efforts have been moderately successful, prevention remains elusive, as “upstream” structural fac-tors—class, gender, and sexuality inequalities—remain difficult to target. Individuals who are affected by these factors are not fully served within linear service frameworks. Based on a 12-month study in Kansas City, we find that service providers recognize the limitations of a “one-size-fits all” approach. Using a public health model, our research team con-ducted a public health surveillance, explored risk and protective factors, and facilitated organizational self-assessments of services. Our findings support a prevention approach that supports a survivor-centered model, which creates new, non-linear or queered avenues of agency and community for trafficking survivors. This model allows survivors to make use of services in moments of vulnerability and opt out of others in moments of resilience. Given the systematic cuts in funding that have affected service providers, this research contends that prevention is cheaper, more effective, and more ethical than relying on prosecutions to curb trafficking. Developing a model that fosters survivor empowerment is a key step toward individual justice and survivor resilience for vulnerable and marginalized populations.
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Koutra, Kleio, Courtney Burns, Laura Sinko, Sachiko Kita, Hülya Bilgin, and Denise Saint Arnault. "Trauma Recovery Rubric: A Mixed-Method Analysis of Trauma Recovery Pathways in Four Countries." International Journal of Environmental Research and Public Health 19, no. 16 (August 19, 2022): 10310. http://dx.doi.org/10.3390/ijerph191610310.
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Research is beginning to examine gender-based violence (GBV) survivors’ recovery, but little is known about diverse recovery trajectories or their relationships with other distress and recovery variables. This interdisciplinary, international multisite mixed-method study developed and used the TRR to identify and classify survivors’ trauma pathways. This study describes the phases of the initial development of the preliminary TRR (Phase 1), refines and calibrates the TRR (Phase 2), and then integrates the TRR into quantitative data from four countries (Phase 3). Seven recovery pathways with six domains emerged: normalizing, minimizing, consumed/trapped; shutdown or frozen, surviving, seeking and fighting for integration; finding integration/equanimity. Depression scores were related to most recovery domains, and TRR scores had large effect sizes. At the same time, PTSD was not statistically related to TRR scores, but TRR had a medium effect size. Our study found that the TRR can be implemented in diverse cultural settings and promises a reliable cross-cultural tool. The TRR is a survivor-centered, trauma-informed way to understand different survivorship pathways and how different pathways impact health outcomes. Overall, this rubric provides a foundation for future study on differences in survivor healing and the drivers of these differences. This tool can potentially improve survivor care delivery and our understanding of how to meet best the needs of the survivor populations we intend to serve.
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Halpern, Michael T., Mary S. McCabe, and Mary Ann Burg. "The Cancer Survivorship Journey: Models of Care, Disparities, Barriers, and Future Directions." American Society of Clinical Oncology Educational Book, no. 36 (May 2016): 231–39. http://dx.doi.org/10.1200/edbk_156039.
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Although the number of long-term cancer survivors has increased substantially over past years, the journey of survivorship does not always include high-quality, patient-centered care. A variety of survivorship care models have evolved based on who provides this care, the survivor population, the site of care, and/or the capacity for delivering specific services. Other areas of survivorship care being explored include how long follow-up care is needed, application of a risk-based approach to survivorship care, and the role of the survivor in his or her own recovery. However, there is little evidence indicating whether any models improve clinical or patient-reported outcomes. A newer focus in survivorship care has included assessment of potential disparities; the sociodemographic characteristics of population subgroups associated with barriers to receiving high-quality cancer treatment may also affect the survivorship period. Developing policies and programs to address disparities in survivorship care is not simple, and examining how financial hardship affects cancer outcomes, reducing economic barriers to care, and increasing incorporation of patient-centered strategies may be important components. Here too, there is little evidence regarding the best strategies to address these disparities. Barriers to providing high-quality, patient-centered survivorship care include lack of evidence, lack of a trained survivorship workforce, lack of reimbursement structures/insurance coverage, and lack of a health care system that reduces fragmented care. Future research needs to focus on developing a survivorship care evidence base, exploring strategies to facilitate provision of survivorship care, and disseminating best survivorship care practices to diverse and international audiences.
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Deressa, Biniyam Tefera, Etsegenet Bekele, Rahima Hussen, and Breanne Lott. "Lessons Learnt From the First Year of a First-of-Its-Kind Breast Cancer Patient Psychosocial Support Group in Ethiopia and Promising Practices for Initiation and Implementation of Survivor Support Programs in Low-Resource Settings." JCO Global Oncology 8, Supplement_1 (May 2022): 8. http://dx.doi.org/10.1200/go.22.14000.
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PURPOSE Psychosocial support helps cancer patients adjust to diagnosis and treatment and improve their overall well-being. With few resources committed to cancer prevention and treatment in Ethiopia, patients’ and survivors’ mental health needs are frequently disregarded, resulting in low quality of life. In October 2020, a support group for breast cancer (BC) patients was formed at Adama Hospital Medical College (AHMC), the first of its kind in Ethiopia. Here, we reflect on lessons learnt from the first year of implementation and share promising practices for establishing such groups in low-resource settings. METHODS The founder and facilitators of the AHMC BC patient and survivor support group describe the program and critically reflect on its impact, challenges to implementation, lessons learned, and ideas for further improvement. Ng and Colombani’s framework for selecting best practices in public health (2015) is used to organize key themes. RESULTS One Saturday each month, 20-30 patients and survivors gather with a traditional Ethiopian coffee ceremony. Participants report feelings of empowerment, hope, and confidence, a stronger sense of interconnectedness with others, and increased engagement in social activities. One notable success was the advocacy opportunity for the women to speak with hospital administrators and Ministry of Health officials at a BC Awareness Month celebration this year. Implementation challenges include a lack of funding, lack of a trained psychologist, and ethical uncertainty about distress caused when members die (not uncommon as patients typically present with advanced stage disease). Clinicians have learned important lessons about patients’ lay beliefs and consequently, patient counseling has been improved to incorporate topics of diet, sexuality, and pregnancy. CONCLUSION A first-of-its-kind BC patient and survivor support group improves perceived psychosocial well-being and quality of life for women in Ethiopia. The low-cost program shares promising practices for survivor support groups and patient-centered cancer treatment in low-resource contexts.
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Grossmann, Jessica, Rachel Shor, Karen Schaefer, and Lauren Bennett Cattaneo. "Development of a tool to assess client-centered practice on a domestic violence hotline." Journal of Social Work 19, no. 1 (February 20, 2018): 102–20. http://dx.doi.org/10.1177/1468017318757395.
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Summary Client-centered practice, also termed survivor-centered practice in the context of domestic violence, has broad support as a set of strategies for working effectively with trauma survivors. However, research, evaluation and staff training are limited by a lack of measurement tools. This paper describes the process of developing an index of hotline caller reactions to practitioners’ client-centered practices. Findings The project was a collaborative effort between academic researchers and practitioners working in a community agency. To generate and refine the items, researchers consulted the scholarly literature and agency materials, had discussions with practitioners, and coded a group of 25 recorded calls to the agency’s hotline. The resulting tool separates two phases of the hotline calls and identifies 23 client reactions to advocate behaviors that indicate the client-centeredness of the interaction. Application The collaborative nature of the process ensured that the final product included multiple vantage points on client-centered practice. The tool developed in this study, the Client-Centered Hotline Assessment Tool (C-CHAT), may be used for research, evaluation, and training. Future research could explore the generalizability and, consequently, predictive utility of the tool in outcomes of interest to practitioners. In evaluation, the tool allows agencies, in assessing client experience, to go beyond client self-report of general satisfaction, and to improve services in response. Finally, in training, the tool allows supervisors to assess the level of fidelity to the client-centered model, and to pinpoint particular aspects of interactions that suggest strengths or growth areas for staff, ultimately improving the quality of services.
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Fogarasi, Miklos C., and Roy P. Eichengreen. "Serial concept mapping: A tool to assess the evolution of medical student learning about cancer survivorship." Journal of Clinical Oncology 36, no. 7_suppl (March 1, 2018): 21. http://dx.doi.org/10.1200/jco.2018.36.7_suppl.21.
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21 Background: Concept mapping (CM) fosters meaningful learning yet its use in cancer education is rare. Serial CM as a learning tool may offer novel ways to promote critical thinking about complex medical issues. We introduced CM in our Cancer Survivorship (CS) elective to study the evolution of students’ conceptual learning, to offer feed-back and as a tool for inter-professional and team-based education. Methods: The study was funded by an institutional grant and received IRB exemption. Eleven 2nd year medical students and 2 pre-med students enrolled. Oncologist-lead classes were co-facilitated by a primary care physician, a survivor, caregivers or other health care professionals. Students were trained using cMAPTools on week 1 and applied domains of the Quality of Life (QoL)-CS tool by City of Hope to their CMs. Feedback given after each round of mapping assessed adequate use of CS concepts and creation of meaningful linkages. Results: Map #1 (week 1) tested baseline perceptions. These maps displayed a wide-range of complexity, a largely non-hierarchical structure with rare connections and a sense of overload by the scope of CS issues. Map #2 (week 4) explored physical and spiritual challenges of CS from a primary care physician and a cancer survivor. Here improved maps presented concepts more clearly but linear thinking with limited crosslinks was still observed. Map #3 (week 8) about social aspects of CS followed lively sessions with a social worker and family caregivers. Emerging cross-links reflected a deeper understanding of survivor issues. Final CMs will be based on interviewing a panel of survivors and should aid students in creating a thorough Survivorship Care Plan. Team-based and inter-professional maps were well received. Conclusions: Serial concept mapping exposes progressive understanding of Survivorship issues during a one-semester elective. CM facilitates the learning of relationships among complex survivorship topics. Inter-professional and team-based CM is feasible. By mapping issues to QoL domains, students practice patient-centered critical thinking. Challenges include low reproducibility due to changing concepts, and limited practicality once concepts grow too large.
Book chapters on the topic "Survivor-centered research"
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Kattari, Shanna K., Héctor Torres, Kim Fountain, and Ing Swenson. "Providing Appropriate Health-Care Services to Transgender and Gender Nonconforming Survivors of IPV." In Transgender Intimate Partner Violence, 169–201. NYU Press, 2020. http://dx.doi.org/10.18574/nyu/9781479830428.003.0007.
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Mental and medical health-care providers often serve as first responders and longer-term therapeutic support for transgender intimate partner violence (T-IPV) survivors. Mental health-care providers in particular are positioned to offer important, client-centered assistance in dealing with the intricacies of addressing IPV, and research finds they are among the most trusted and utilized sources of help by survivors. Likewise, due in part to the emergency medical needs of survivors of physical IPV, medical health-care providers can play a vital role in recognizing IPV victimization and guiding patients toward needed resources. Drawing on both the T-IPV and broader lesbian, gay, bisexual, transgender, and queer IPV literatures, this chapter provides a template for best practices in a multisystem approach with regard to developing culturally appropriate mental and medical health-care provider training programs, screening protocols, treatment modalities, and auxiliary service referrals when working with T-IPV survivor populations.