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.
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Bedi, Julie Summey, Elizabeth Charron, Regina A. Franco, Matt Olinger, Lori Dickes, and Rachel Mayo. "Elucidating the endocrine therapy experience of South Carolina breast cancer survivors." Journal of Clinical Oncology 36, no. 7_suppl (March 1, 2018): 186. http://dx.doi.org/10.1200/jco.2018.36.7_suppl.186.
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186 Background: Literature consistently shows high discontinuation and non-adherence rates for patients taking endocrine therapy (ET) for breast cancer treatment. The aim of this study is to understand from the breast cancer survivor perspective which modifiable aspects have the greatest impact on the likelihood of ET continuation. Methods: Twenty-two hormone receptor-positive breast cancer survivors under age 64 who had been prescribed ET since 2000 were recruited for participation in focus groups conducted in four South Carolina locations. Qualitative data analysis was completed by a three-member team using an inductive narrative approach. Themes were examined by participant decision to continue or discontinue ET. Results: Participants’ conversations centered around a quality of life cost-benefit analysis that they felt was unique to the individual and could not be generalized by providers. Main themes included the significance of the patient/provider relationship, the desire for a more holistic approach to care, and the need for affirmation in the decision to take ET (i.e. through breast cancer social network, family, faith, research). There was clear support for the utility of multidisciplinary cancer care teams. The roles of nurse navigator and rural pharmacist were specifically highlighted. Participants expressed concerns regarding ET’s damage to their bodies, and participants discussed the dilemma of not having enough time to spend caring for self. Conclusions: The few studies that have addressed currently used interventions to improve adherence showed little to no improvement over usual care. It is imperative that research be conducted that employs a patient-centered perspective. Knowledge gained through further study exploring patient concerns, multidisciplinary teams, and holistic care are needed. There is also a need for novel patient-centered interventions in research to improve compliance and enhance the ET experience for breast cancer survivors.
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Ghanbarpour, Susan, Ada Palotai, Mimi E. Kim, Aracelia Aguilar, Juana Flores, Amber Hodson, Tara Holcomb, et al. "An Exploratory Framework for Community-Led Research to Address Intimate Partner Violence: a Case Study of the Survivor-Centered Advocacy Project." Journal of Family Violence 33, no. 8 (September 21, 2018): 521–35. http://dx.doi.org/10.1007/s10896-018-9987-y.
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Swiecichowski, Mandy, Amye Tevaarwerk, Mark Juckett, James Edward Haine, Kirsten Norslien, Jessica Becher, Bethaney Campbell, Eneida Mendonca, and Mary Sesto. "Leveraging the electronic health record (EHR) to support survivorship care planning for bone marrow transplant (BMT) survivors." Journal of Clinical Oncology 36, no. 7_suppl (March 1, 2018): 57. http://dx.doi.org/10.1200/jco.2018.36.7_suppl.57.
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57 Background: BMT survivors are underrepresented in survivorship research, yet are at high risk for complications. Practice guidelines are vague, non-BMT clinicians are inadequately informed, and communication between BMT and non-BMT clinicians is inconsistent. Our objective is to develop EHR-integrated survivorship care planning that is user-centered, supports non-BMT clinician and survivor needs, but does not adversely impact clinical workflow. Methods: A multidisciplinary team of clinicians (primary care, oncology, BMT), engineers, and EHR analysts used a systems engineering approach to identify barriers and facilitators to BMT survivorship care planning. The team identified patient data categories to include in BMT survivorship care plan (SCP) templates, as well as examined tasks, technology, workflows and individual roles and responsibilities necessary to support care planning. Results: Facilitators include: potential for EHR to discretely capture individual diagnosis and treatment data to create accurate SCPs addressing survivor and primary care information needs. Barriers are: lack of EHR inter-operability which prevents sharing of patient data outside the BMT center’s EHR system, reliance on manual entry of critical data elements into the SCP (i.e. majority of the 88 patient data categories, identified by the team, are non-discrete in the EHR), inefficient or absent survivorship workflows, lack of resources (including time, dedicated clinical staff, space, SCP content), poorly defined roles and responsibilities for survivorship care provision, and lack of evidence-based BMT survivorship guidelines. Conclusions: Work system barriers impede use of the EHR to support survivorship care planning. Steps to overcome barriers: design discrete fields in the EHR to support patient-level data capture, re-engineer existing workflows to support survivorship care planning, obtain BMT program consensus on SCP content, and evaluate user-centeredness of SCPs. This research has the potential to improve feasibility and sustainability of survivorship care planning activities, resulting in improved communication and care coordination for BMT survivors.
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Johnston, Matthew S. "When Madness Meets Madness: Insider Reflections on Doing Mental Health Research." International Journal of Qualitative Methods 18 (January 1, 2019): 160940691983535. http://dx.doi.org/10.1177/1609406919835356.
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Insider–outsider relations in qualitative research have been heavily studied. Yet there is a dearth in the literature exploring how people who have experienced madness produce knowledge and overcome trying circumstances when they do qualitative mental health research with other survivors. This article fills this gap through a critical reflection on my experiences with psychosis and involuntary hospitalization and how they shaped dialogue with my participants. Situated within a narrative framework of inquiry, I reveal how self-disclosure and critical forms of relationality during interviews with 10 psychiatric survivors produced a survivor-centered knowledge that nuances biomedical understandings of mental illness and the mental health system. Practices of self-disclosure revealed how survivors and I had to navigate familial expectations as we recovered and tried to regain a sense of identity. Doing insider research also helped me overcome the periods of embarrassment and stigma in my psychosis, as I learned through critical dialogue how traumatic events can provide unique avenues for intense self-reflection and the development of greater empathy for mental health survivors. I also discuss some of the ethical concerns and limitations of having an insider status in qualitative mental health research, and how self-disclosure may present certain epistemological challenges in the research process.
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Miller, Nina S. "The Commission on Cancer’s survivorship care plan standard: Implementation is underway." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 72. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.72.
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72 Background: The American College of Surgeons Commission on Cancer established a patient-centered standard regarding the delivery of a survivorship care plan to cancer patients. In response to recommendations from the 2006 National Academy of Sciences, Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, a working group developed a set of Continuum of Care standards to address the psychosocial needs of cancer patients. In 2009 Commission on Cancer members had met to discuss a strategic plan for addressing a major shift in accreditation standards from process to patient-centered care with a focus on patient outcomes. According to Cancer Program Standards: Ensuring Patient-Centered Care, the cancer program must implement a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. Programs are in full implementation mode and surveys monitoring this Survivorship Care Plan Standard have begun this year. The care plan provides guidance and recommendations for survivors and their healthcare providers to address the medical and psychosocial problems that may arise post-treatment. By delivering a plan, the patient is empowered with information about the treatment they have received, the recommendations for their care going forward, and recommended resources. Methods: Programs submit documentation to describe their process for delivery of care through an electronic activity report. Documentation of this standard includes method of delivery, identification of eligible patients, implementation process and tracking. This presentation will summarize program submissions for 2015-2016 and include an analysis of the details of the standard compliance as reported by accredited programs. Results: This analysis will include responses from all Commission on Cancer accredited programs reporting on this standard. The analysis will provide information about the trends in program implementation and compliance with the standard. Conclusions: This analysis will inform future decisions about the content of plans, the value of plan delivery to the provider and to the patient and summarize current practice.
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Chouliara, Zoë, Thanos Karatzias, Angela Gullone, Sandra Ferguson, Katie Cosgrove, and Claire Burke Draucker. "Therapeutic Change in Group Therapy For Interpersonal Trauma: A Relational Framework for Research and Clinical Practice." Journal of Interpersonal Violence 35, no. 15-16 (April 24, 2017): 2897–916. http://dx.doi.org/10.1177/0886260517696860.
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Our understanding of therapeutic change processes in group therapy for complex interpersonal trauma has been limited. The present study aimed at addressing this gap by developing a framework of therapeutic change in this field from a survivor and therapist perspective. This is a qualitative study, which utilized semistructured individual interviews. Transcripts were analyzed using interpretative phenomenological analysis (IPA) to identify recurrent themes. A final sample of n = 16 patients and n = 5 facilitators completed the interview. Main change processes identified by survivors were as follows: self versus others, trust versus threat, confrontation versus avoidance, and “patching up” versus true healing. Therapeutic processes identified by therapist facilitators included managing group dynamics, unpredictability and uncertainty, and process versus content. The proposed framework explains therapeutic change in group therapy in relational terms, that is, therapeutic dissonance, the dynamic interaction of self and experience as well as building empathic trusting relations. The importance of managing dissonance to aid personally meaningful recovery was highlighted. These findings have implications for the usefulness of relational and person-centered approaches to clinical practice in the area of interpersonal and complex trauma, especially in the early identification, prevention, and management of dropouts.
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Hinkel, Jennifer M., Daniel B. Sexton, and Justine Egan-Kunicki. "Value of life and time: A survivorship perspective." Journal of Clinical Oncology 35, no. 15_suppl (May 20, 2017): e18298-e18298. http://dx.doi.org/10.1200/jco.2017.35.15_suppl.e18298.
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e18298 Background: Common tools to quantify value of life years after a cancer diagnosis include the Quality Adjusted Life Year (QALY). This measure is partly based on health utility states derived from Quality of Life (QoL) survey instruments such as the EQ-5D. Research has identified shortcomings in applying the QALY, including the potential for underestimating value. QoL surveys may fail to capture the full range of potential health states, or the values derived may fail to reflect patient perspectives of value. Methods: An online survey was piloted with a convenience sample of cancer survivors via two US survivor Facebook groups over two weeks in Jan. 2017 to explore these themes. Results: 116 complete responses were analyzed (of 123 respondents). Original diagnoses included solid tumors and hematologic malignancies, and respondents were between one and 32 years post-diagnosis (PoD). Most (101, 87%) had completed active treatment. A majority (85, 73%) rated PoD years as having more value than years pre-diagnosis (PreD). 83% (98) indicated that they felt their time is more valuable since their diagnosis. While the majority of respondents (57%) assigned a lower value to the 12 months immediately following diagnosis compared to the value of a PreD year, a majority (55%) also valued the most recent twelve months to have equal or greater value than a PreD year. Many assigned higher valuations to PoD years even when simultaneously reporting limitations in Activities of Daily Living (ADLs). Conclusions: Comparing survivor valuations of PoD life years to valuations derived by utility state instruments has not been heavily researched. This survey generates additional hypotheses. First, assuming PoD years hold lower value than PreD years may underestimate value compared to a survivor’s view. Second, QoL instruments may not be capturing positive changes in PoD years, some of which have been documented in psychology research, such as Post-Traumatic Growth or increased feeling of meaningfulness. Further investigation is imperative to ensure that value determinations have a solid evidentiary basis and reflect patient-centered viewpoints, particularly as the “value debate” influences patient access to care.
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Friedman, Jennifer, and Laurel D. Graham. "The Skills of Poverty Survival: One Woman's Life and Stories." Humanity & Society 32, no. 4 (November 2008): 361–86. http://dx.doi.org/10.1177/016059760803200404.
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Previous research has determined that American women living in poverty depend upon resources such as kinship networks, employment, and agency assistance in order to get by. However, researchers have not given much attention to the actual skills that enable poor women to access these resources. This paper is a life story-centered ethnography of a woman named “Millie,” a middle-aged, Puerto Rican, dark complexioned, former heroin user who has become an experienced poverty survivor living in a southern U.S. city. By accompanying Millie and talking with her regularly over a ten-year period, the first author, Jennifer Friedman, observed her using four categories of skills (conservation, observation, network-building, and performance), sometimes in illegal ways, to obtain resources. Millie's stories about her life enhance our understanding of these skills while also casting doubt on popular cultural stereotypes about “non-working” poor women.
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Demers, Jennifer M., Alexa P. Roberts, Sidney Bennett, and Victoria L. Banyard. "Victim Motivations for Disclosing Unwanted Sexual Experiences and Partner Abuse." Affilia 32, no. 3 (May 1, 2017): 327–43. http://dx.doi.org/10.1177/0886109917704936.
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Sexual assault and partner abuse are major problems on college campuses. While the majority of victims will tell a friend or other informal support about their experience, formal disclosures to authorities are still infrequent. Past research has examined barriers to choosing to disclose; however, little research has explored victims’ motivational goals behind their decision to disclose to various people. In the present study, 13 semistructured interviews were conducted with survivors of partner abuse and/or sexual violence at northeastern universities in the United States and the resulting data were content coded for motivations associated with disclosing. Four major themes emerged: (1) improving emotional or psychological well-being; (2) fulfilling perceived social obligations or responsibilities; (3) seeking information or assessment; and (4) seeking action in the form of advocacy, accommodations, or criminal prosecution. Results from this study suggest that there is not a “one-size-fits-all” model for responding to informal and formal reports of victimization on campuses. Implications of these results for designing survivor-centered college community responses will be discussed.
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Emlet, Charles A., Lesley Harris, Christina M. Pierpaoli, and Charles Furlotte. "“The Journey I Have Been Through”: The Role of Religion and Spirituality in Aging Well Among HIV-Positive Older Adults." Research on Aging 40, no. 3 (March 6, 2017): 257–80. http://dx.doi.org/10.1177/0164027517697115.
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The National Institutes of Health human immunodeficiency virus (HIV) and Aging Working Group identified spirituality as a research emphasis. This qualitative study examines the importance of religion and spirituality among 30 HIV-positive older adults. Using modified grounded theory, adults 50+ were recruited in Ontario, Canada, through AIDS service organizations, clinics, and community agencies. Descriptions of religion and spirituality encapsulated the idea of a journey, which had two components: the long-term HIV survivor profile combined with the experience of aging itself. A final category of HIV as a spiritual journey was finalized through consensus and included the properties of (1) being rejected by as well as rejection of formalized religion, (2) differentiating spirituality from religion, (3) having a connection, (4) feeling grateful, and (5) mindfulness and learning new skills. Interventions fostering resilience and strengths in HIV-positive older adults using spirituality should be considered, including the promotion of person-centered spirituality and interventions that include mindfulness and skill building.
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Wood, Leila, Laurie Cook Heffron, Molly Voyles, and Shanti Kulkarni. "Playing by the Rules: Agency Policy and Procedure in Service Experience of IPV Survivors." Journal of Interpersonal Violence 35, no. 21-22 (June 27, 2017): 4640–65. http://dx.doi.org/10.1177/0886260517716945.
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More than 1,800 programs exist in the United States, providing not only shelter but also transitional housing, advocacy and support, transportation, legal aid, and group and individual counseling for women who have experienced intimate partner violence (IPV). Shelter and transitional housing provide critical support for survivors, but have also been critiqued for having too many restrictive rules and code of conduct. More information is needed about the impact of rules and agency policy on women seeking services in IPV residential settings. This qualitative study explored the central research question, “How do rules shape IPV residential environment and survivor experiences in services?” Twenty-five women in four programs in two states who were currently residing in IPV residential services were interviewed about their experiences. Data were analyzed using grounded theory methods. Findings indicated rules affect individual survivors’ and families’ experiences and responses in services and of healing from IPV (micro), the relationships among residents and between residents and staff (mezzo), and participants’ relationships with the agency as an institution and the help-seeking community (macro). An intriguing paradox is noted in that at their best, rules provide stability and motivation for some survivors. At their worst, rules create isolation and force exit from shelter into unsafe circumstances, causing a ripple effect of impact. Implications include the need to restructure rules and policies collaboratively with residents, and reduce the amount of rules used in services. Addressing rules will better enable IPV services to be survivor-centered and trauma-informed, ultimately increasing safety and healing.
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Wheeler, Stephanie B., Racquel Elizabeth Kohler, Ravi K. Goyal, Katherine Elizabeth Reeder-Hayes, Kristen Hassmiller Lich, Timothy Smith, Cathy Melvin, Alexis Moore, and Marisa E. Domino. "Patient-centered medical homes may improve breast cancer surveillance among survivors." Journal of Clinical Oncology 30, no. 15_suppl (May 20, 2012): 6029. http://dx.doi.org/10.1200/jco.2012.30.15_suppl.6029.
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6029 Background: Community Care of North Carolina (CCNC) initiated a medical home (MH) program in the early 1990s focused on improving care in Medicaid-insured populations. CCNC has been successful in improving asthma, diabetes, and cardiovascular disease outcomes, but has not been examined in the context of cancer care. We sought to determine whether CCNC enrollment was associated with improved cancer surveillance among breast cancer survivors. Methods: Using state cancer registry records linked to Medicaid claims, we identified women ages 18-64 diagnosed with stage 0, I, or II breast cancer from 2003-2007. We included only cases insured by Medicaid for at least 12 of 15 months following the index cancer diagnosis. Reflecting ASCO guidelines for breast cancer surveillance for survivors (2006), we defined outcomes as time to first surveillance mammogram post-diagnosis and overall receipt of mammogram by 15-months post-diagnosis. Our primary independent variable was enrollment in CCNC, categorized as never enrolled, enrolled up to 6 months, and enrolled 7 months or more. We used multivariate Cox proportional hazards stratified by receipt of radiation therapy (RT) and logistic regressions. Results: 840 women were included in our sample. Approximately half were enrolled in CCNC for at least some time during the study period, 38% for more than 7 months post-diagnosis. Among women who received RT, being in a MH for at least 7 months corresponded to earlier follow-up mammogram (Hazard Ratio: 1.34; p=0.028), controlling for all other factors. Enrollment in a MH for at least 7 months post-diagnosis also was associated with overall receipt of mammogram by 15 months (p<0.01). Interaction terms indicated that women enrolled in MHs and living in a rural area had a statistically significant higher likelihood of receiving mammography. Conclusions: Results suggest that MH enrollment is associated with improved cancer surveillance among breast cancer survivors insured by Medicaid. Given the growing population of cancer survivors and increased emphasis on MHs in the Affordable Care Act, more research is needed to explore how patient-centered medical homes can be enhanced to improve the transition from cancer patient to cancer survivor.
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Salz, Talya, Mary S. McCabe, Kevin C. Oeffinger, Rebecca B. Schnall, Stacie Corcoran, Andrew J. Vickers, Andrew L. Salner, et al. "Survivor feedback on a late effects-oriented survivorship care plan for head and neck cancer." Journal of Clinical Oncology 35, no. 15_suppl (May 20, 2017): e21596-e21596. http://dx.doi.org/10.1200/jco.2017.35.15_suppl.e21596.
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e21596 Background: Survivorship care plans (SCPs) typically include generic advice for the management of late effects (LEs) that can occur, rather than addressing LEs that the survivor actually has. We developed a platform called HN-STAR that uses electronic patient-reported outcomes (ePROs) and evidence-based LE management to generate a personalized SCP for survivors of head and neck cancer (HNC), a population vulnerable to various LEs. We assessed HNC survivors’ experiences with HN-STAR to ensure its acceptability and usefulness. Methods: Disease-free HNC survivors at two cancer hospitals used HN-STAR in conjunction with a routine survivorship visit. Prior to the visit, survivors used a validated ePRO measure (PRO-CTCAE) to report up to 22 physical LEs. Based on clinic visit discussions, HN-STAR generated an SCP that included a treatment summary and LE management plans. Survivors indicated their level of agreement to statements regarding the ease of use of the ePROs, content of the SCP, and intentions to adhere to LE management recommendations. Results: 47 survivors completed surveys (mean 5.4 years from treatment completion). Most were white (89%), male (85%), had an oropharynx tumor (58%), and received multimodality therapy (81%). More than half (51%) experienced at least 9 of the 22 LEs in the last 30 days (mean 8.2 per person). Most survivors reported that completing ePROs improved the discussions with their provider (98%), the quality of their care (96%), and their communication with their provider (98%). 91% agreed the SCP was the right length, and 98% agreed it was easy to follow. 98% intended to follow at least some of the recommendations for LEs management, and 98% reported feeling confident that they could follow the recommendations. The majority agreed that the SCP accurately summarized the clinic visit (98%), they would refer back to the SCP (98%), they trust the SCP (100%), and they plan to share the SCP with a primary care provider (87%). Conclusions: Among HNC survivors, an automatically generated SCP that was tailored to their LEs was acceptable, was trusted, and provided recommendations they intended to follow. Patient-centered SCPs that focus on existing LEs hold promise as a means to help survivors manage LEs.
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Hawley, Sarah T., Nancy K. Janz, Sarah E. Lillie, Kendra L. Schwartz, John Graff, Ann S. Hamilton, and Steven J. Katz. "The involvement of partners in breast cancer treatment decision making." Journal of Clinical Oncology 30, no. 15_suppl (May 20, 2012): 6023. http://dx.doi.org/10.1200/jco.2012.30.15_suppl.6023.
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6023 Background: Incorporating partners into treatment decision making is an important element of patient-centered care, yet little is known about the role of partners in the decision process. Methods: We surveyed 503 partners of a population-based sample of breast cancer survivor 4 years after diagnosis (RR= 76%, N=382).The outcome was partners’ reports of decision regret. Independent variables included decision making process measures (partners’ reports of sufficient treatment information receipt and sufficient involvement in decision making), race/ethnicity, age, education and income. Multivariable logistic regression was used to assess associations between decision regret and race/ethnicity, controlling for other variables. Results: 49% of partners were white, 14% African American, 15% more-acculturated Latino, and 18% less-acculturated Latino. One quarter (26%) of partners reported that they received insufficient information and one third (35%) desired more involvement in decision-making. Compared to whites, less-acculturated Latino partners more often reported that they received insufficient information (41% vs. 18%, p<0.05) and desired more involvement in decision-making (49% vs. 14%, p<0.001). Overall 30% of partners reported high decision regret. Multivariate analyses showed factors associated with high decision regret were less-acculturated Latinos, insufficient information receipt and desire for more involvement (Table). Conclusions: Most partners of breast cancer survivors reported low decision regret and positively appraised their involvement in the decision process. Less acculturated Latinos reported more dissatisfaction with the decision process. Findings suggest the need for culturally appropriate treatment decision support interventions that include partners. [Table: see text]
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Arora, Neeraj K., Bryce B. Reeve, Ron D. Hays, Steven B. Clauser, and Ingrid Oakley-Girvan. "Assessment of Quality of Cancer-Related Follow-Up Care From the Cancer Survivor's Perspective." Journal of Clinical Oncology 29, no. 10 (April 1, 2011): 1280–89. http://dx.doi.org/10.1200/jco.2010.32.1554.
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Purpose We assessed cancer survivors' perceptions of the quality of their follow-up care. Methods We surveyed a population-based cohort of leukemia, bladder, and colorectal cancer survivors diagnosed 2 to 5 years previously in northern California (N = 623; participation rate, 69.2%; overall response rate, 49.2%). Data were collected between April 2003 and November 2004. Ten scales assessed survivors' perceptions of different aspects of care in the last 12 months, and an eleventh scale measured their overall ratings of care. Results On nine of the 11 scales, mean scores ranged from 88 to 97 on a 0 to 100 response format, indicating very positive experiences. The two areas where quality perceptions were lower were discussions about health promotion and the physician's knowledge of the whole patient. In adjusted analyses, those without private health insurance (P = .02) and Hispanic and Asian survivors compared with whites (P < .001) reported worse timeliness of care. Survivors who had multiple comorbidities reported better scores on timeliness of care (P < .01) and physicians' knowledge (P = .05) than survivors without any comorbidity. Length of the patient-physician relationship was the variable most consistently found to be significantly associated with survivors' quality assessments. Physicians' information exchange had the strongest relationship with overall ratings of care, followed by physicians' affective behavior, their knowledge of the survivor, and survivors' perceptions of coordination of care (P < .001 for all). Conclusion Delivery of quality follow-up care to cancer survivors may require efforts to improve patient-centered communication and coordination. Special emphasis may need to be placed on health promotion discussions and adoption of a whole-person orientation.
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Barada, Rassil, Alina Potts, Angela Bourassa, Manuel Contreras-Urbina, and Krystel Nasr. "“I Go up to the Edge of the Valley, and I Talk to God”: Using Mixed Methods to Understand the Relationship between Gender-Based Violence and Mental Health among Lebanese and Syrian Refugee Women Engaged in Psychosocial Programming." International Journal of Environmental Research and Public Health 18, no. 9 (April 23, 2021): 4500. http://dx.doi.org/10.3390/ijerph18094500.
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Lebanon’s intersecting economic and political crises exacerbate complex public health issues among both host and refugee populations. This mixed-methods study by a Lebanese service provider, in partnership with an international research institute, seeks to better understand how experiences of gender-based violence (GBV) and mental health intersect in the lives of Syrian and Lebanese women, and how to better meet these needs. It employs a randomized cross-sectional survey of 969 Abaad service users and focus groups with community members and service providers. There were significant associations between GBV and ill mental health; notably, respondents reporting transactional sex had 4 times the likelihood of severe distress (aOR 4.2; 95% CI 1.2–14.8; p ≤ 0.05). Focus groups emphasized less-visible forms of violence, such as emotional violence, and the importance of environmental factors in one’s ability to cope, noting “it always came back to the economy”. Recommendations include providing a more holistic and coordinated approach between GBV, mental health, livelihood, and basic assistance sectors; and sensitive, accessible, and higher-quality mental health services informed by GBV response actors’ experience putting in place survivor-centered programming and made available to both host and refugee community members.
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Wachter, Karin, Jessica Dalpe, and Laurie Cook Heffron. "Conceptualizations of Domestic Violence–Related Needs among Women Who Resettled to the United States as Refugees." Social Work Research 43, no. 4 (August 29, 2019): 207–19. http://dx.doi.org/10.1093/swr/svz008.
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Abstract Despite robust evidence of the myriad consequences associated with intimate partner violence (IPV), social services in the United States may not adequately account for and respond to variations in how women resettling as refugees conceptualize service and support needs. With this study, the authors sought to develop a more nuanced understanding of needs as expressed by women resettling to the United States as refugees. Researchers conducted in-depth interviews and focus groups with refugee women who resettled to the United States (n = 35) and social services providers (n = 53), including those working in refugee resettlement or domestic violence agencies or community-based organizations. The research team used structural coding and thematic analysis to examine the data, through which they identified four themes: (1) living with enduring consequences of IPV, (2) “I just want them to help me,” (3) “I need you to talk to my husband,” and (4) “How will I pay the rent?” The study findings point to broader structural concerns shaping women’s resettlement experiences, as well as areas of incongruence between women’s conceptualizations of needs and established practice approaches. Implications for culturally competent and survivor-centered practice are discussed.
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Ashing, Kimlin T., Folakemi T. Odedina, Cassandra N. Moore, Che Ngufor, Getachew A. Dagne, Fornati Bedell, Diana Londoño, et al. "Abstract A033: The iCCARE Consortium for Prostate Cancer in Black men: Creating a survivorship care plan for Black prostate cancer survivors." Cancer Epidemiology, Biomarkers & Prevention 32, no. 1_Supplement (January 1, 2023): A033. http://dx.doi.org/10.1158/1538-7755.disp22-a033.
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Abstract Background: Globally, Black men suffer the greatest prostate cancer (CaP) burden. Blacks are diagnosed more at advanced stages of CaP, greater morbidity and mortality and poorer survivorship outcomes. Blacks are exposed to adverse, discriminatory societal determinants. How these determinants impact the CaP disparities, in particular survivorship and health related quality of life inequities are understudied. Studies examining patient-reported outcomes of Black CaP survivors reveal heightened negative HRQOL sequelae, and depression, family, work and living situation instability due to cancer treatment and societal determinants of health (SDOH). SDOH is used mostly in Public Health to predict population health risk and outcomes, but rarely integrated into HRQOL research and practice. This project is novel by incorporating SDOH into the assessment and relief of HRQOL threats. Despite the Black CaP disparities in survivorship, there remains unacceptable lack of focus and prioritization to provide comprehensive relief. Methods: In response to this noticeable scientific gap, our requisite multidisciplinary investigatory team including Survivor-Advocate Investigators joins forces to achieve the study goal. We are employing community engaged research practice to create a CaP survivorship care plan (SCP) template targeted to Blacks. Our SCP will provide a comprehensive best-practice roadmap to document medical information with treatment history and status, along with relevant resources and health advisories to provide relief for unfavorable sequalae due to cancer and its treatments as well as improve quality of life for CaP survivors. We are building upon the Science of Survivorship, and Contextual Socioecological and the Behavioral Precision Medicine Models with full survivor-advocate partnership to create the SCP. This project to develop a SCP template employs an informative consensus panel to inform the initial SCP. Results: Based on advocate-survivor input and guidance, the SCP will include resources and tools focused on SDOH, treatment adherence, treatment side effects and symptom relief, co-occurring chronic conditions, cardio-protective strategies, and physical, emotional and social wellbeing towards improving in patient outcomes and HRQOL in Black CaP survivors. Data from the Engagement Core and Survivor-Advocate Community Advisory Board, and the preliminary SCP CaP for Black men will be presented at the meeting. Conclusion: Our Consortium builds upon the work of the multidisciplinary PIs, and provide team science approach with robust scientific methods to better understand and address the HRQOL needs of Black CaP survivors. Importantly, this research will make available a patient-centered SCP for CaP survivors, focused on Black men. The iCCaRE Consortium will use this SCP_CaP to inform the development of Artificial Intelligence interventions addressing medical, follow-up care, surveillance, social and emotional support, SDOH and health advisories that will be deployed on popular mobile platforms for greater reach and on-demand use. Citation Format: Kimlin T. Ashing, Folakemi T. Odedina, Cassandra N. Moore, Che Ngufor, Getachew A. Dagne, Fornati Bedell, Diana Londoño, John McCall, Arnold Merriweather, JoAnne S. Oliver, Rotimi Rotimi Oladapo. The iCCARE Consortium for Prostate Cancer in Black men: Creating a survivorship care plan for Black prostate cancer survivors [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A033.
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Martin, Lauren, Mahima Gupta, Kayse L. Maass, Christina Melander, Emily Singerhouse, Kelle Barrick, Tariq Samad, et al. "Learning Each Other’s Language and Building Trust: Community-Engaged Transdisciplinary Team Building for Research on Human Trafficking Operations and Disruption." International Journal of Qualitative Methods 21 (January 2022): 160940692211019. http://dx.doi.org/10.1177/16094069221101966.
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Background: Human trafficking for sexual exploitation (referred to as sex trafficking) is a complex global challenge that causes harm and violates human rights. Most research has focused on victim-level harms and experiences, with limited understanding of the networks and business functions of trafficking operations. Empirical evidence is lacking on how to disrupt trafficking operations because it is difficult to study; it is hidden and dangerous, spans academic disciplinary boundaries, and necessitates ways of knowing that include lived experience. Collaborative approaches are needed, but there is limited research on methods to best build transdisciplinary teams. Aim: The aim of this study was to understand how to form a community-engaged transdisciplinary research team that combines qualitative and operations research with a survivor-centered advisory group. Methods: We conducted a qualitative meta-study of our team that is seeking to mathematically model sex trafficking operations. Data were collected from the minutes of 16 team meetings and a survey of 13 team members. Results: Analysis of meeting minutes surfaced four themes related to content and style of communication, one related to value statements, and one capturing intentional team building efforts. Survey results highlighted respect, trust, integrity, openness and asking and answering questions as key aspects of team building. Results show that an action research approach to team building, focused on trust and communication, fostered effective collaboration among social scientists, operations researchers, and survivors of trafficking. Conclusion: Team building, shared language, and trust are essential, yet often neglected, elements of team science. This meta-study provides important methodological insights on community engaged transdisciplinary team formation to tackle vexing social challenges.
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Gilmore, Katherine Ramsey, Guadalupe R. Palos, Paula A. Lewis-Patterson, Patricia Chapman, Delrose Jones, Weiqi Bi, and Maria Alma Rodriguez. "Clinical tools to enhance survivorship cancer." Journal of Clinical Oncology 33, no. 29_suppl (October 10, 2015): 245. http://dx.doi.org/10.1200/jco.2015.33.29_suppl.245.
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245 Background: Clear patient-centered recommendations for follow-up and health maintenance is a primary goal of ASCO’s model for survivorship and palliative care. The Commission on Cancer also sought to improve the quality of survivorship care by requiring accredited programs to implement survivorship care plans (SCPs) and treatment summaries by 2015. Our aim is to describe the SCP's components and metrics collected in 12 survivorship clinics of an academic cancer center. Methods: A multidisciplinary team was convened to develop clinical practice tools to guide providers on transitioning patients to a survivorship clinic. These tools were based on 4 IOM's domains: surveillance, risk reduction, late effects management, and emotional function.Algorithms are supported with a Passport Plan for Health (Passport) specifically designed for each disease. These clinical tools allowed clinicians to provide recommendations for each survivor. Tools were electronically available to survivors and their primary care providers. Descriptive statistics were used to summarize metrics in this analysis. Results: To date, 44 cancer-site specific algorithms and 19 Passports have been launched and used by clinicians in 12 survivorship clinics.Metrics collected are: a) number of Passports completed, b) providers’ completion of SCPs, and c) dates with counseling recommendations outlined in the treatment pathways. Since FY08, 25,912 Passports were distributed to 13,105 survivors. In FY14, 6,160 Passports were issued (80.7% provider completion rate). Passport completion varied by provider (7%-97%). Survivors were counseled for recommendations related to colonoscopy (97% of the time), skin screening (98%), mammogram (97%), gynecological screening (95%), and prostate screening (74%). Conclusions: Algorithms and SCPs serve as clinical tools to help providers and survivors manage physical and emotional issues. These tools increase standardization in the delivery of survivorship care, safety, quality, and promote communication among survivors and providers across clinical settings.
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Berry, Emily, Sandi Pruitt, Eric Borton, Aurelio Rodriguez, and Keith Edward Argenbright. "Evaluating effectiveness in an urban comprehensive cancer survivorship program." Journal of Clinical Oncology 36, no. 7_suppl (March 1, 2018): 35. http://dx.doi.org/10.1200/jco.2018.36.7_suppl.35.
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35 Background: Advances in early detection and treatment has led to a growing cancer survivor population, many of whom have encountered devastating effects as a result of diagnosis and treatment. While this phase of care represents a distinct opportunity, evidence-based cancer survivorship programs are often only associated with large cancer centers or academic medical centers and are limited in scope because they are costly and poorly reimbursed. Moncrief Cancer Institute established its program using a community-based model to provide a patient-centered solution, offering evidence-based multidisciplinary services to survivors regardless of diagnosis, treatment provider, socioeconomic status, or insurance coverage. To improve sustainability, we intend to advance data available to insurers and policy makers to encourage service reimbursement. We are developing a comprehensive, linked data repository designed to facilitate effectiveness research for our cancer survivorship program. Methods: Focusing on patients affiliated with the safety-net health system, we use their tumor registry as the sampling frame. These data are then matched with the clinical services database for the survivorship program to create an intervention group, participants, and a matched comparison group of nonparticipants. The established cohort is then matched to electronic medical record data from JPS. Results: Data has been extracted and linked at the patient level, and scrubbed and de-identified for analysis. A total of 8,325 cancer patients were identified from the registry, of these 467 were survivorship program participants. Preliminary analysis is comparing participants to nonparticipants and characterizing program participation. Once completed, analysis will extend to surrogate measures for effectiveness, evaluating impact on healthcare utilization and screening/surveillance uptake. Conclusions: Our approach has created a tool to facilitate a better understanding of survivorship care. With this, we can provide novel evidence regarding participation in a comprehensive cancer survivorship program among urban safety-net healthcare system patients and evaluate impact at the patient and healthcare system levels.
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Evans, Heather. "The integral role of relationships in experiences of complex trauma in sex trafficking survivors." International Journal of Human Rights in Healthcare 13, no. 2 (April 15, 2020): 109–23. http://dx.doi.org/10.1108/ijhrh-07-2019-0054.
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Purpose Human sex trafficking is a global rights violation prevalent nationally and globally. This study aims to contribute to the limited research conducted directly with survivors with the goal of building sustainable aftercare from their feedback. Design/methodology/approach For this qualitative, retrospective study, 15 adult female survivors completed open-ended interviews, took photos and participated in online focus groups to explore identity, sexuality, relationships and factors of community reintegration. Data analysis included multi-level conceptual and thematic coding. Findings Participants identified with all aspects of complex trauma and domains of post-traumatic growth. Participants highlighted relationship development as the primary source of healing and growth, emphasizing the value of peer-based support and survivor leadership. Research limitations/implications The findings affirm the need for ecological and relational perspectives in care of survivors and approaches using a trauma-informed, victim-centered lens. Findings affirm the value of understanding the nuances of complex trauma as well as celebrating the capacity for post-traumatic growth. Furthermore, while relationships are most significantly impacted from the trafficking experience, they are also considered the greatest instrument of healing, offering long-term commitment and belief in the individual. This research excluded males and international trafficking survivors. Participants were recruited through service organizations, and many participants are active in advocacy work, which may hinder generalizable data for all trafficking survivors. Finally, this study did not distinguish data between geographic location or range or length of time since exiting trafficking. Originality/value This study highlights the voices of survivors throughout research design and data findings. Their lived experiences provide key recommendations for interaction and intervention. Data include rich expression through photography.
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Fogarasi, Miklos C., Gerald R. Berg, and Roy P. Eichengreen. "Cancer survivorship in the primary care setting: A new medical school elective." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 15. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.15.
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15 Background: Responding to calls for education in Cancer Survivorship, the Frank H. Netter MD School of Medicine introduced new content using an interactive student elective for Y2 medical students with the goal of improving medical knowledge and confidence in caring for survivors. Methods: Learning objectives and course content were developed based upon the ASCO curriculum (ASCO Core Curriculum for Cancer Survivorship Education Shapiro, CL et al, Journal of Oncology Practice Feb 2016 Vol. 12 (2) p 145-e117). Seven medical and one biomedical science student enrolled to complete the Sep-Dec 2016 course. Weekly sessions, facilitated by an Oncologist, utilize independent and collaborative learning, small group role playing, concept maps, algorithms and multiple case scenarios to identify and analyze key issues of survivorship. Co-facilitators with varied expertise and cancer survivors are invited weekly. Successful completion requires active participation, reading and discussion of required articles, contributing to a Glossary, and constructing a Survivorship Care Plan after independently interviewing a cancer survivor. A pre/post course questionnaire and reflective writing is used to assess change in knowledge and attitudes. Results: Weekly attendance was excellent, and students remained highly engaged. Sessions involving a geneticist, social worker, hospice nurse or APRN were well received. Students built a Glossary of cancer-terms, and practiced “Skills of the Week”. Pass/fail data and questionnaire data are pending, as the course is ongoing. Conclusions: Teaching cancer survivorship is feasible for Y2 students. Motivation and interest in the topic is high for this self-selected course. Based upon early observations and feedback the small group setting is valuable for interactions with survivors and inter-professional staff. Students recognize complex social factors influencing survivors’ care and combine knowledge from prior molecular biology, genetics, and physiology classes with the humanistic aspects of patient-centered care. If course evaluation data confirms its value, this curriculum may serve as one element of a multi-level graduate/post-graduate curriculum in Survivorship education.
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Tangen-Steffins, Kristin, Nelson Leong, Sally Hodgson, Elizabeth Wambolt, Catherine Hildebrand, Chantalle Willie, Khurram Siddiqui, et al. "Development and evaluation of the TrueNTH-Prostate Cancer Canada electronic Library for Improved (urinary and bowel) Function post Treatment (TrueNTH-PCC-eLIFT)." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 161. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.161.
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161 Background: The TrueNTH program is a Movember-funded, pan Canadian effort to develop a comprehensive patient-centered online portal in English and French that will cover a full spectrum of prostate cancer survivor needs. Through the support of Prostate Cancer Canada, the TrueNTH-PCC-eLIFT resource, as part of the TrueNTH program, is being developed by a multi-disciplinary team of urologists, radiation oncologists, gastroenterologists, researchers, nurses and survivors at pilot sites in Victoria, BC and London, ON. eLIFT will address urinary and bowel side effects that may be experienced after curative intent treatment by External Beam Radiation Therapy (EBRT), Brachytherapy (BT), combined EBRT + BT or Radical Prostatectomy (RP). Methods: eLIFT includes a didactic electronic library, symptom assessment tool and content tailored to treatment or symptoms experienced. A sequential prospective cohort study is underway to evaluate the impact of the resource. A baseline cohort of eighty patients per site receiving standard of care is currently open. A second cohort of eighty patients per site will be accrued to receive the eLIFT intervention. The study measurespatient self-efficacy, knowledge, Health Related Quality of Life (HRQoL), urinary and bowel function, health resource usage and satisfaction. Results: eLIFT content, with a total of 22 video modules is complete and in production. Preliminary results from the first cohort of patients, receiving standard care, confirm a need for a reliable, online resource in Canada. Patients note that the oral information provided by their oncologist at their preliminary consultation, while informative, is not easily retained. Information that was provided as print varied and was often outdated. Further, patients deem websites outside of Canada as the most reliable and helpful, which may not reflect Canadian recommendations. Conclusions: eLIFT will provide a unique and scalable centralized resource that will allow for expansion to a National level and increase access to a scientifically-sound library of information with the goal of improving the quality of care for prostate cancer patients across Canada.
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Garcia, Sofia F., Katy Wortman, Yanina Guevara, Elizabeth A. Hahn, Maria E. Corona, Shakuntala Shrestha, and Paramjeet Khosla. "Piloting breast cancer survivorship care planning in a safety net hospital." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 65. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.65.
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65 Background: Survivorship care plans (SCPs) include treatment summaries and follow-up care recommendations intended to improve patient care and well-being after cancer treatment. Limited research has yielded mixed results regarding SCPs' impact on patient and system outcomes, but emphasized provider burden as an implementation barrier. We created a patient-centered SCP template and implemented its delivery at a safety net hospital that serves primarily racial/ethnic minority patients. Methods: In a single-arm feasibility study, oncologists and advanced practice nurses used the template to deliver SCPs to post-treatment breast cancer survivors (BCS) in consultation visits. We assessed changes in patient-reported outcomes from baseline (pre-SCP) to a 3-month follow-up, as well as provider time burden. Results: Female BCS participants (n = 75; mean age = 58.5 years) were primarily African-American (73%) and had high school/GED education or less (61%). Average time since diagnosis was 3.7 years (SD = 3.8); all received surgery; most received radiation (84%), hormone (77%), and/or chemotherapy treatment (73%). At follow-up, a majority rated their SCPs as good to excellent (92%), easy or very easy to understand (84%), a good to excellent summary of their treatment (92%) and as motivation for healthy lifestyles (88%). BCS follow-up scores improved significantly from baseline on breast cancer knowledge (p = .02), self-efficacy (p = .03), the QLQ-INFO25 (p < .01), and the FACIT TS-PS satisfaction with health care staff communication subscale (p < .01). No significant differences between baseline and follow-up scores (p < .05) were found for overall treatment satisfaction, health behaviors, and health-related quality of life. Preparing and delivering SCPs took providers considerable time (M = 54 & 22 minutes, respectively). Conclusions: This pilot study is limited by a single-arm design, but results suggest that SCPs may be related to improved survivor knowledge, information, self-efficacy and communication with health care staff. The individualized, comprehensive SCPs were well received by BCS in a safety net hospital but delivery was time-intensive. These findings will inform future research trials and clinical care initiatives.
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McDonnell, Karen Kane, Otis L. Owens, Jenay M. Beer, Kasey Smith, Taylor Kennedy, Dane Acena, and David Gallerani. "Empowering lung cancer survivors and family members to “breathe easier”: Adaptation and evaluation of a m-health intervention." Journal of Clinical Oncology 37, no. 15_suppl (May 20, 2019): e23046-e23046. http://dx.doi.org/10.1200/jco.2019.37.15_suppl.e23046.
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e23046 Background: Survivors of lung cancer often experience a myriad of symptoms that have devastating effects on their physical and psychological functioning such as dyspnea, fatigue, and stress. To combat these symptoms, the American College of Chest Physicians has recommended the use of complementary therapies. Mindfulness-based Cancer Recovery (MBCR) can empower survivors, and caregivers who often cope with their own health problems and the stress related to caring for a survivor. Our goal is to deliver a tailored, culturally sensitive, MBCR intervention to survivors and family members via a mHealth app. Methods: This research was comprised of four phases. Phase I was the development and testing of an 8-week in-person intervention called Breathe Easier with survivors and family members (dyads). Phase II adapted Breathe Easier into a mHealth app prototype utilizing user-centered design. Phase III was a focus-group evaluation of the usability and acceptance of the mHealth app prototype by survivors and family members. Phase IV was comprised of additional interviews with an African-American subset of survivors and family members to assess the cultural sensitivity of the mHealth app. Results: Findings from the in-person intervention (n = 62) showed that all agreed the intervention materials were acceptable, different levels of yoga, breathing exercises, and meditations helped them, and involving a family member was important. Preliminary analyses showed survivors had less dyspnea and perceived stress over time (T1 vs T2). Both groups had improved fatigue and sleep scores. Findings from the mHealth app design and acceptance evaluation were organized into two primary categories: usefulness and ease of use. User-friendly design recommendations included aesthetic appeal, navigation layout, and display of content. Furthermore, potential health outcomes, privacy concerns, and comparison to in-person interventions also influenced app usefulness and acceptance. Lastly, findings from our cultural sensitivity assessment demonstrated that the mHealth app was culturally sensitive for African-Americans, but some changes were recommended. Conclusions: MBCR interventions hold great promise for improving the lives of racially diverse survivors of lung cancer and family members. An mHealth app will increase accessibility. However, special consideration of app design is needed to ensure future acceptance and longer-term usage.
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Wagaman, Bailey, and Steven Berman. "A-188 The Effect of Traumatic Experiences on Identity Among People With Expressive Language Disorders." Archives of Clinical Neuropsychology 37, no. 6 (August 17, 2022): 1343. http://dx.doi.org/10.1093/arclin/acac060.188.
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Abstract Objective: To examine the effects of traumatic brain injury (TBI) on identity functioning. Method: TBI survivors’ recollections of their sense of identity before and after they acquired a TBI were compared. Participants (N = 15, Mage = 52.67) recruited from rehabilitation and support groups completed two clinical interviews, as well as the Trauma Impacts of Identity Functioning Scales (Waterman, 2020) and Identity Distress Scale (Berman et al., 2004). They were mostly stroke survivors with aphasia. The majority of the participants were White (53.3%). The time since they acquired an expressive language disorder ranged from 2 to 21 years ago (M = 7.33). Results: A paired samples t-test revealed a significant increase in identity distress from pre- to post-brain injury (t(14) = -3.11, p = .008, 95% CI). A ONEWAY ANOVA revealed that ratings of how important their career is to their sense of identity significantly decreased post-TBI (F(1, 13) = 17.47, p = .001, λ = .427, 95% CI). During the clinical interviews, many TBI survivors reflected that they lost a large part of themselves because they could no longer pursue their careers, and they experienced drastic changes in their relationships and life roles. Participants had identity development delays, trauma-centered identity, identity loss, identity threat, and identity affirmation. Conclusion: Identity changes post-TBI varied greatly from one survivor to another, and time since trauma was not significantly correlated with identity functioning nor identity distress, suggesting the need for future research to determine which factors influence why TBI survivors’ experience post traumatic identity disruption and/or post-traumatic growth.
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Garza, Rose Hennessy, Michelle Y. Williams, Shana O. Ntiri, Michelle DeCoux Hampton, and Alice F. Yan. "Intersectionality Impacts Survivorship: Identity-Informed Recommendations to Improve the Quality of Life of African American Breast Cancer Survivors in Health Promotion Programming." International Journal of Environmental Research and Public Health 19, no. 19 (October 6, 2022): 12807. http://dx.doi.org/10.3390/ijerph191912807.
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(1) Background: African American women breast cancer survivors face unique experiences that impact their quality of life as they transition beyond treatments. Experiences may be complicated by living at the intersection of systemically oppressed identities, including gender, race, social class, and cancer-related disability. Using the Black Feminist Thought (BFT) framework and the PEN-3 cultural model, this qualitative study sought to: (a) understand African American women breast cancer survivors’ lived experiences; (b) examine how the multiple intersecting factors of race, gender, social class/socioeconomic status, and cancer-related disability impact their quality of life; and (c) inform future health promotion programming that is culturally relevant to AAWBCS to improve their quality of life. (2) Methods: Seven focus groups were conducted with 30 African American breast cancer survivors in a Midwestern metropolitan region. Focus groups were audiotaped and transcribed verbatim. Framework analyses were conducted to identify themes with NVivo qualitative analysis software. (3) Results: Four themes emerged: (a) caregiving roles provide both support and challenges for survivors, (b) the “strong Black woman” is inherent in survivor experiences, (c) intersectionality impacts survivorship, and (d) African American women resist oppression through culturally specific supports and advocacy. (4) Conclusions: The intervention point of entry should be at the peer support group level and centered on family and provide community-based support and services. Future research should move upstream to address social determinants of health, including racism, sexism, and ableism; there is a critical need to discuss how structural racism affects health care and develop interventions to address racial discrimination and racial bias in health care.
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Mangada, Ladylyn Lim, and Yvonne Su. "Achieving Human Security after a Disaster: the Case of the Haiyan Widows." Philippine Political Science Journal 40, no. 1-2 (September 19, 2019): 153–81. http://dx.doi.org/10.1163/2165025x-12340006.
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Abstract When Typhoon Haiyan struck the Philippines on November 8, 2013, it took the lives of over 6,300 people. Many of those who died were men who did not evacuate in order to protect their homes. As a result, widowhood was a significant and devastating consequence of Haiyan, but widowed women were also one of the most neglected and underserved vulnerable populations in the aftermath of the disaster. The data used in this study were drawn from 15 semi-structured interviews and three focus group discussions with widowed women in three areas in the province of Leyte that were heavily affected by Haiyan: Tacloban City, Palo, and Tanauan. Our fieldwork uncovered that while the delivery of humanitarian assistance provided a modicum of human security to the survivors, the ability for widows to achieve human security was severely reduced and constrained. Thus, the main research question of this paper is: “What undermined the widows from attaining human security after Haiyan?” and we argue that there were four main factors: (1) the lack of equal access to economic opportunities; (2) the occurrence of new risks in the resettlement sites; (3) the inability of institutions to respond and adapt to change; and (4) the absence of survivor-centered decision making venues. To overcome these barriers to human security in the future, we make two key policy recommendations on how local government units, being the primary organizations that deliver prevention and response services, need to do. These are: (1) prioritize the elimination of existing economic and social vulnerabilities in the relocation sites, and (2) prepare the widows and their families for future climate shocks.
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Pérez-Sales, Pau, and Maggie Zraly. "From sexualized torture and gender-based torture to genderized torture: The urgent need for a conceptual evolution." Torture Journal 28, no. 3 (November 27, 2018): 1–13. http://dx.doi.org/10.7146/torture.v28i3.111179.
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Classical perspectives on sexualized torture are being increasingly challenged by contemporary debates informed by emerging claims (Mendez, 2016; Sáez, 2016; Sifris, 2014). Gender-based analysis based on feminist and other theoretical approaches is needed to adequately address these.
Arriving at a general framework for the reconceptualization of torture, and progressively widening the analytical scope of gender and torture, are priorities. Gender analyses of torture needs to encompass a broader range of phenomena, from rape and attacks on sexual integrity to any suffering inflicted on human beings that is intricately intertwined with gender (Jakobsen, 2014), including and not limited to discrimination against LGTBI persons,1 genital mutilation, and the restriction of any of the broad range of issues under the frame of reproductive freedom, such as abortion and involuntary sterilization.2
The push for a gender transformative rethinking of conceptual and analytical approaches to torture is accompanied by the need to develop specific tools to detect and assess sexual and gender-based torture (including the necessity for a reconsideration of gender perspectives on the Istanbul Protocol), to incorporate a feminist perspective in the rehabilitation of victims. This requires specific treatment approaches as well as holistic survivor-centered rehabilitation models that include access to high quality and comprehensive services. Services that support stigma reduction are particularly important.
Our own desk review on all papers published in Torture Journal since 2006 until 2018 showed a clear gender analysis gap: only 32% of papers included the word ‘gender’ and 38% the word ‘female’ in any part of the text. In 84% of the cases, these mentions simply indexed the presentation of data disaggregated by sex. Only 4% of all the papers published in the Journal attempted a gender analysis. To help address this gap, the Journal circulated a call for papers on gender and torture that aligned with research priorities identified in our Delphi study (Pérez-Sales, Witcombe, & Otero, 2017). The response to this call has been encouraging.
This issue features a collection of texts that highlight important aspects of sexualized and gender-based torture and provide reflections that contribute to framing the theoretical debate on the nature and scope of gender-based and genderized forms of torture. The Journal believes that even more research and reflection is necessary to adequately clarify and raise the terms of this debate and additional texts relevant to the topic are planned to appear in forthcoming issues. This current issue draws out key concepts that are important to making an impact, both on the debate and in practice.
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Diaz, Kristina M., Edward Paul, Gregory John C. Yang, Shirley Phillips, John Bowles, and Trudie Milner. "A new paradigm for patient-centered breast cancer care." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 46. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.46.
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46 Background: The active role of a primary care physician has been shown to improve outcomes for patients in all areas of health management. Cancer care is rapidly evolving as a result of major advances in cancer genomics and the production of new, mostly oral, chemotherapeutic agents targeted to specific patients. The estimated number of cancer survivors is expected to dramatically increase in the next decade. One good example of a new model of cancer care that relies upon the steady presence and involvement of the primary care physician is the care of patients with non-metastatic breast cancer. The current model of breast cancer care includes the primary physician identifying a lesion, obtaining required imaging, making a preliminary diagnosis of presumptive breast cancer, referring to the surgeon and/or oncologist, then resuming care of the patient post survivorship. In the new model of care described here, oncologists play a peripheral role and once therapy is initiated, care by the primary care physician in an integrated, team-oriented, system becomes ideal. Methods: Via a shared care model in which the primary physician is trained to provide direct oncologic care for the patient. They will thereafter initiate a survivor plan that will allow the patient to return to their own medical ecosystem with the least delay and compromise. The primary physician is anticipated to actively direct care for the cancer patient including prescribing recommended cancer treatment, managing medication side effects, and making appropriate referrals when necessary. Results: see below Conclusions: There is good evidence that outcomes by a primary care physician throughout the entire breast cancer treatment phase are comparable to care provided by oncologists in the current model. When the primary care physician is given the right tools and empowered to lead the care for the patient, improved compliance, improved psychosocial quality, and appropriate survivorship follow up can be achieved. With the ability to care for all aspects of their patient’s needs, both biomedical and emotional, the primary physician can, and should, start taking a more active and holistic role in providing care for their patients. Never was this more true then now.
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Hunt, Rachel, Adam Robin, Lisa Scarpace, Nestelynn Gay, Ian Lee, Tobias Walbert, and James Snyder. "INNV-25. PATIENT CENTERED MULTI-DISCIPLINARY NEURO-ONCOLOGIC CARE AS DIRECTED BY NEW PATIENT STAKEHOLDERS." Neuro-Oncology 22, Supplement_2 (November 2020): ii122. http://dx.doi.org/10.1093/neuonc/noaa215.508.
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Abstract Multidisciplinary oncology care requires a team of experts which should include patient stakeholders. The Henry Ford Health System (HFHS) Hermelin Brain Tumor Center (BTC) patient and family advisory council (PFAC) recommended a focus group of patient stakeholders newly diagnosed with glioblastoma(GBM) to better understand this experience. Our PFAC, comprised primarily of long-term survivors and patient advocates, felt the perspective of newly diagnosed patients may not be adequately represented. We reviewed the BTC tumor board records, identified patients within six months from GBM diagnosis, and invited these patients and their advocates to participate in an in-person session held November 2019. The BTC Patient Resource Coordinator who is also a brain tumor survivor led the session. Predefined questions prompted discussion of their neuro-oncologic care experience. Patient perspectives and recommendations were disseminated to the BTC PFAC and health system leaders. Nine patients and ten caregivers participated. Key feedback included the need for improved communication in the peri-operative period (symptom presentation until pathology results consultation). Participants requested more information prior to surgery on what to expect after surgery and with a brain tumor diagnosis. The PFAC-developed BTC experience handbook was declared useful, but patients did not receive this book until 2-weeks after surgery. As a result, we ensured that patients received a copy of the handbook at the time of diagnosis. Additionally, the development of a brain tumor surgery “prehab” course is underway. Use of a focus group to obtain input from patients recently diagnosed with GBM provided valuable insight into their experience that can be used to align care pathways with patient needs. Feedback was used to improve the delivery of neuro-oncologic care and enhance patient communication. In the constantly evolving landscape of GBM diagnosis and treatment, it is important to remain attuned to our patients’ perspectives on the care we deliver.
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Riley, Kathy. "QOL-51. LISTENING BEFORE WE SPEAK: A PATIENT-CENTERED APPROACH TO DEVELOPING RESOURCES FOR PEDIATRIC BRAIN TUMOR SURVIVORS AND THEIR FAMILIES." Neuro-Oncology 22, Supplement_3 (December 1, 2020): iii440. http://dx.doi.org/10.1093/neuonc/noaa222.705.
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Abstract In the United States, more than 28,000 children and teenagers live with the diagnosis of a primary brain tumor (Porter, McCarthy, Freels, Kim, & Davis, 2010). In 2017, an estimated 4,820 new cases of childhood primary brain and other central nervous system tumors were expected to be diagnosed in children ages 0 – 19 in the United States (Central Brain Tumor Registry of the United States, 2017). Survivors suffer from lifelong side effects caused by their illness or by various treatments. Commonly identified late effects of treatment include a decline in intellectual functioning and processing speed, performance IQ deficits, memory deficits, psychological difficulties, deficits in adaptive functioning (daily life skills), and an overall decrease in health-related quality of life (Castellino, Ullrich, Whelen, & Lange, 2014). To address the ongoing challenges these survivors and their families face, the Pediatric Brain Tumor Foundation (PBTF) met extensively with working groups comprised of survivors and caregivers to develop the outline for a comprehensive Survivorship Resource Guidebook. In 2019, the PBTF published the guidebook which categorizes survivor and caregiver needs into three primary areas: physical and mental health, quality of life, and working the system. Expert authors included survivors and caregivers themselves in addition to medical and mental health professionals. Key outcomes discovered during the creation and production of this resource highlight how caregivers, survivors and professionals can collaborate to provide needed information and practical help to one segment of the pediatric cancer population who experience profound morbidities as a result of their diagnosis and treatment.
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Cattaneo, Lauren B., Amanda M. Stylianou, Stephanie Hargrove, Lisa A. Goodman, Kris T. Gebhard, and Timothy W. Curby. "Survivor-Centered Practice and Survivor Empowerment: Evidence From A Research–Practitioner Partnership." Violence Against Women, July 14, 2020, 107780122093519. http://dx.doi.org/10.1177/1077801220935196.
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In the domestic violence field, a survivor-centered approach to services is a shared ideal, but there is little empirical work demonstrating its importance. This study filled that gap, focusing on a key outcome—safety-related empowerment. We gathered data from 177 intimate partner violence (IPV) survivors seeking community-based services, and after one session with an advocate, results revealed a significant change in two of three subscales of the Measure of Victim Empowerment Related to Safety (MOVERS) measure: Internal Tools and Expectations of Support. There was no change in Trade-Offs (pursuing safety causing new problems). More survivor-defined practice predicted greater changes in empowerment, over and above severity of violence, post-traumatic stress disorder (PTSD), and demographics.
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Jumarali, Selima N., Nkiru Nnawulezi, Samantha Royson, Carrie Lippy, Ashley N. Rivera, and Ty Toopet. "Participatory Research Engagement of Vulnerable Populations: Employing Survivor-Centered, Trauma-Informed Approaches." Journal of Participatory Research Methods, July 21, 2021. http://dx.doi.org/10.35844/001c.24414.
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McLoone, Jordana K., Weihan Chen, Claire E. Wakefield, Karen Johnston, Rachael Bell, Elysia Thornton-Benko, Richard J. Cohn, and Christina Signorelli. "Childhood cancer survivorship care: A qualitative study of healthcare providers’ professional preferences." Frontiers in Oncology 12 (October 4, 2022). http://dx.doi.org/10.3389/fonc.2022.945911.
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PurposeChildhood cancer survivorship care is a complex specialty, though it is increasingly being integrated into the general practitioner’s (GP) remit. Establishing the essential components of tertiary- and primary-led care, to maximize the benefits and overcome the challenges inherent to each, is essential to inform the development of survivor-centered, sustainable care models.MethodsWe used the qualitative principles of semi-structured interviewing, verbatim transcription, coding (supported by NVivo12) and thematic analysis, to collect and evaluate the views and preferences of pediatric oncologists, survivorship nurse coordinators, and GPs currently caring for childhood cancer survivors.ResultsSeventy healthcare providers (19 oncology staff and 51 GPs) from 11 tertiary hospitals and 51 primary practices across Australia and New Zealand participated. Participants reported specialist expertise and holistic family-centered care as the key benefits of tertiary and primary care respectively. Participants reported that tertiary-led survivorship care was significantly challenged by a lack of dedicated funding and costs/travel burden incurred by the survivor, whereas primary-led survivorship care was challenged by insufficient GP training and GPs’ reliance on oncologist-developed action plans to deliver guideline-based care. GPs also reported a need for ongoing access to survivorship expertise/consultants to support care decisions at critical times. The discharge of survivors into primary care limited late-effects data collection and the rapid implementation of novel research findings.ConclusionsHealthcare professionals report that while a risk-stratified, collaborative model of survivor-centered care is optimal, to be implemented successfully, greater provisions for the ongoing engagement of GPs and further access to GP education/training are needed.
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Sadak, Karim Thomas, Milki T. Gemeda, Michelle Grafelman, Joseph P. Neglia, David R. Freyer, Eileen Harwood, and Jude Mikal. "Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors." BMC Cancer 20, no. 1 (September 21, 2020). http://dx.doi.org/10.1186/s12885-020-07360-9.
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Abstract Background Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient’s perspective, key factors that facilitate successful transitions to adult-centered survivorship care. Methods A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. Results Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. Conclusions From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS’ report as important in transitioning care from pediatric- to adult-centered care.
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Mitra, Atreyi, Dallas Swendeman, Stephanie Sumstine, Cierra Raine Sorin, Brittnie E. Bloom, and Jennifer A. Wagman. "Structural Barriers to Accessing the Campus Assault Resources and Education (CARE) Offices at the University of California (UC) Campuses." Journal of Interpersonal Violence, September 8, 2021, 088626052110428. http://dx.doi.org/10.1177/08862605211042813.
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In order to continue pushing college campuses to the forefront of survivor-centered practice and student-centered care, it is imperative that the barriers students experience in accessing campus sexual violence resource centers be documented and addressed. This research evaluates student and staff perceptions of barriers to accessing the Campus Assault Resources and Education (CARE) offices on three University of California (UC) campuses. Data were collected by researchers from UC Speaks Up, a cross-campus research initiative at UC Los Angeles (UCLA), UC Santa Barbara (UCSB), and UC San Diego (UCSD) aimed at understanding factors that both contribute to and prevent sexual violence among college students. This analysis only included data that yielded insights into CARE’s accessibility. Thematic analysis of 63 interviews and 27 focus group discussions was conducted using Dedoose. The following six thematic codes emerged from the data: (1) awareness of office, (2) confidentiality of services, (3) physical accessibility, (4) accessibility for vulnerable and marginalized groups, (5) utilization experiences, and (6) limited institutional support. To increase the accessibility of sexual violence resource centers in higher education, this study indicates that universities and campus sexual violence resource centers should (1) encourage survivor-centered cross-campus collaborations between sexual violence resource centers and other campus entries, (2) add more trainings that are tailored to the needs of vulnerable and marginalized communities, (3) increase the resource’s campus-wide office exposure through multiple prevention education opportunities, and (4) better fund sexual violence resource centers. Implications for future research are discussed to maximize this study’s public health impact.
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Bloom, Brittnie E., Eunhee Park, Dallas Swendeman, Laury Oaks, Stephanie Sumstine, Claire Amabile, Stoddy Carey, and Jennifer A. Wagman. "Opening the “Black Box”: Student-Generated Solutions to Improve Sexual Violence Response and Prevention Efforts for Undergraduates on College Campuses." Violence Against Women, January 18, 2022, 107780122110680. http://dx.doi.org/10.1177/10778012211068063.
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Campus-based sexual violence and sexual harassment (SVSH) are prevalent issues that impact students detrimentally. Guided by community-based participatory research, this qualitative study assessed undergraduate students’ perceptions of available campus SVSH resources, gaps in services, and recommendations for solutions for SVSH at three universities in California via interviews and focus groups. Approximately half of participants were unaware of available SVSH services, while others had varying knowledge of service availability and experiences with services. Students want better-funded, trauma-informed, and survivor-centered services and providers who share their identities and lived experiences. We provide multi-level student-centered solutions to improve current campus-based SVSH prevention efforts.
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Santa Mina, Daniel, Stefanus J. van Rooijen, Enrico M. Minnella, Shabbir M. H. Alibhai, Priya Brahmbhatt, Susanne O. Dalton, Chelsia Gillis, et al. "Multiphasic Prehabilitation Across the Cancer Continuum: A Narrative Review and Conceptual Framework." Frontiers in Oncology 10 (January 11, 2021). http://dx.doi.org/10.3389/fonc.2020.598425.
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The field of cancer survivorship has significantly advanced person-centered care throughout the cancer continuum. Within cancer survivorship, the last decade has seen remarkable growth in the investigation of prehabilitation comprising pre-treatment interventions to prevent or attenuate the burden of oncologic therapies. While the majority of evidence remains in the surgical setting, prehabilitation is being adapted to target modifiable risk factors that predict poor treatment outcomes in patients receiving other systemic and localized anti-tumor treatments. Here, we propose a multiphasic approach for prehabilitation across the cancer continuum, as a conceptual framework, to encompass the variability in cancer treatment experiences while adopting the most inclusive definition of the cancer survivor.