A Community-based Participatory Research Project Exploring Skin Cancer Among Native Americans as presented in Cancer Education, Research and Outreach

Abstract (up to 250) words: Suzanne, an elder of The Osage Nation, has been diagnosed with basal cell carcinoma, squamous cell carcinoma, and melanoma skin cancer. Her daughter, Bobbie, a cancer researcher working for the Youth Enjoy Science Research Education Program, conducted a case study to share Suzanne’s story through written narrative and a series of images that present Suzanne’s reflections on cancer prevention and treatment from a holistic perspective. Eight interview transcripts, as well as photographs, drawings, and paintings of Suzanne, were created and analyzed to explore Suzanne’s lived experience of cancer. In her story of living with cancer, Suzanne shares an elder’s love and wisdom that can inform cancer education and prevention efforts to help address Native American cancer disparities. Bobbie presents this community-based participatory research project exploring skin cancer among Native Americans in cancer education, research and outreach

An Art-based Case Study: Reflections on End of Life from a Husband, Artist and Caregiver

This study explores the reflective processes of Scottish artist, Norman Gilbert, as he created twenty-five drawings depicting his wife, Pat Gilbert, as she lay dying following an Alzheimer’s-related stroke. Norman, ninety-one, had drawn Pat regularly over their sixty-five-year marriage. One week after Pat died, Norman was interviewed by a family friend to chronicle his reflections on the drawings. The drawings along with the interview transcript are analyzed qualitatively as a case study. Norman’s Hospital Drawings of Pat transform what was initially a private experience into a shared comprehension of end of life and bereavement

Rebuttal to published article “A review of ghost gear entanglement amongst marine mammals, reptiles and elasmobranchs” by M. Stelfox, J. Hudgins, and M. Sweet

Author Posting. © The Author(s), 2016. This is the author's version of the work. It is posted here under a nonexclusive, irrevocable, paid-up, worldwide license granted to WHOI. It is made available for personal use, not for redistribution. The definitive version was published in Marine Pollution Bulletin 117 (2017): 554-555, doi:10.1016/j.marpolbul.2016.11.052.We reviewed the findings of the recently published article by Stelfox et al. (2016): “A review of ghost gear entanglement amongst marine mammals, reptiles and elasmobranchs” published in this journal (Volume 111, pp 6–17) and found that they are both flawed and misleading as they do not accurately reflect the prevalence of “ghost gear” cases reported in the literature. While we commend the authors for recognizing the importance of attempting to quantify the threat and for recommending more comprehensive databases, the methods, results and conclusions of this review have not advanced the understanding of the issue. As authors of the papers on whale entanglements in the North Atlantic that were reviewed by Stelfox et al. (2016) and others who are knowledgeable about the topic, we provide specific comments regarding misrepresentations of both the source of entanglement (e.g., actively fished gear versus “ghost gear”) and the number of reported entanglements for whale species included in the North Atlantic

Don’t assume it’s ghost gear : accurate gear characterization is critical for entanglement mitigation [poster]

Presented at the Society for Marine Mammology 22nd Biennial Marine Mammal Conference, Halifax, Nova Scotia, October 23-27, 2017Entanglement is a significant conservation and welfare issue which is limiting the recovery of a number of marine species, including marine mammals. It is therefore important to reliably identify the causes of these events, including the nature of the entangling gear in order to reduce or prevent them in the future. A recently published review of marine debris assessed 76 publications and attributed a total of 1805 cases of cetacean entanglements in “ghost gear”, of which 78% (n=1413) were extracted from 13 peer reviewed publications. We examined the 13 publications cited in the review and found that the specific gear type or status of gear involved in the reported events was rarely mentioned beyond the fact that it was fishing related. This is likely due to the fact that determinations of debris as the entangling material are very difficult. In fact, in reviewing 10 years of large whale entanglement records for the U.S., the authors of another study reported that Hawaii was the only region in which any entangling gear was positively identified as ghost gear. The assumption that entangling gear is marine debris unless otherwise stated is dangerous because it could impact efforts to modify or restrict risk-prone fishing in key marine mammal habitats. Entanglement in actively fished gear poses a very real threat, and claims that only lost or abandoned fishing gear is responsible for entanglements can undermine conservation efforts.2017-10-2

From the Ground Up: Indigenizing Medical Humanities and Narrative Medicine

Scholars in the emerging academic field of Medical Humanities (MH) argue that the MH can nurture students’ understanding of personal values, empathy, narrative integrity and cultural humility. MH programs, thus, include disciplinary diversity (offering courses in literature, cultural studies, visual arts, history of medicine, bioethics, etc.) but often do not consider the importance of diversity among the faculty that build and sustain the program. As we move from developing and teaching MH courses into an era of developing and implementing MH programs, we are called to address critical gaps in the conceptualization and realization of MH programs. In this reflective essay, we open up dialogue about the value of faculty diversity with the purpose of helping shape the vision and values of other developing MH programs. We share our experiences, as Indigenous scholars and educators, in the creation and expansion of a MH program at a mid-western state university. By sharing how we brought Indigenous values and perspectives to our roles as founding Director of the MH program and members of the MH executive committee, we tell the story of how our Indigenous worldviews are embodied in practices of narrative medicine that help bring us into wholeness as individuals and as an institution. In doing so, we establish the value of including faculty from diverse backgrounds in MH programs, give examples of how we incorporated Indigenous peoples\u27 ways of knowing, being and doing in our MH program and make recommendations for developing MH programs

SaludABLEOmaha: Improving Readiness to Address Obesity Through Healthy Lifestyle in a Midwestern Latino Community, 2011–2013

Background A community’s readiness for change is a precursor to the effective application of evidence-based practices for health promotion. Research is lacking regarding potential strategies to improve readiness to address obesity-related health issues in underserved communities. Community Context This case study describes SaludABLEOmaha, an initiative to increase readiness of residents in a Midwestern Latino community to address obesity and adopt healthy lifestyles. Methods SaludABLEOmaha emphasized 2 core approaches, youth activism and collaboration among public and private institutions, which we applied to planning and implementing tactics in support of 3 interconnected strategies: 1) social marketing and social media, 2) service learning in schools (ie, curricula that integrate hands-on community service with instruction and reflection), and 3) community and business engagement. Following the Community Readiness Model protocol (http://triethniccenter.colostate.edu/ communityReadiness.htm), structured interviews were conducted with community leaders and analyzed before and 2.5 years after launch of the program. Outcome The community increased in readiness from stage 3 of the Community Readiness Model, “vague awareness,” at baseline to stage 5, “preparation,” at follow-up. Interpretation SaludABLEOmaha improved community readiness (eg, community knowledge, community climate), which probably contributed to the observed increase in readiness to address obesity through healthy lifestyle. Community mobilization approaches such as youth activism integrated with social marketing and social media tactics can improve community responsiveness to obesity prevention and diminish health disparities

Portrait of a process: arts-based research in a head and neck cancer clinic

The role of art in medicine is complex, varied and uncertain. To examine one aspect of the relationship between art and medicine, investigators analysed the interactions between a professional artist and five adult patients with head and neck cancer as they cocreated portraits in a clinical setting. The artist and four members of an interdisciplinary team analysed the portraits as well as journal entries, transcripts of portrait sessions and semistructured interviews. Over the course of 5 months, 24 artworks evolved from sittings that allowed both the patients and the artist to collaborate around stories of illness, suffering and recovery. Using narrative inquiry and qualitative arts-based research techniques five emergent themes were identified: embracing uncertainties; developing trusting relationships; engaging in reflective practices; creating shared stories; and empowerment. Similar themes are found in successful physician–patient relationships. This paper will discuss these findings and potential implications for healthcare and medical education

Translation and adaptation of functional auditory performance indicators (FAPI)

Work with deaf children has gained new attention since the expectation and goal of therapy has expanded to language development and subsequent language learning. Many clinical tests were developed for evaluation of speech sound perception in young children in response to the need for accurate assessment of hearing skills that developed from the use of individual hearing aids or cochlear implants. These tests also allow the evaluation of the rehabilitation program. However, few of these tests are available in Portuguese. Evaluation with the Functional Auditory Performance Indicators (FAPI) generates a child's functional auditory skills profile, which lists auditory skills in an integrated and hierarchical order. It has seven hierarchical categories, including sound awareness, meaningful sound, auditory feedback, sound source localizing, auditory discrimination, short-term auditory memory, and linguistic auditory processing. FAPI evaluation allows the therapist to map the child's hearing profile performance, determine the target for increasing the hearing abilities, and develop an effective therapeutic plan. OBJECTIVE: Since the FAPI is an American test, the inventory was adapted for application in the Brazilian population. MATERIAL AND METHODS: The translation was done following the steps of translation and back translation, and reproducibility was evaluated. Four translated versions (two originals and two back-translated) were compared, and revisions were done to ensure language adaptation and grammatical and idiomatic equivalence. RESULTS: The inventory was duly translated and adapted. CONCLUSION: Further studies about the application of the translated FAPI are necessary to make the test practicable in Brazilian clinical use