The Experience and Management of Medical Uncertainty in Telomere Biology Disorders

Background: Telomere biology disorders (TBDs) are rare, cancer-predisposing, genetic conditions with wide phenotypic spectrums and ages of onset creating a burden of medical uncertainty. No research addresses medical uncertainty in this context. Methods: Study 1 is a qualitative thematic analysis of telephone interviews to explore medical uncertainty sources, issues, and management strategies of patients with TBDs and their caregivers. Study 2 is a mixed methods content analysis of TBD-related social media posts to assess types of medical uncertainty discussed online in the TBD community. Study 3 used the same methods as Study 1 to explore motivations for and perceived benefits and barriers to the use of online support resources. Results: Individuals with TBDs and their caregivers experience chronic or recurrent uncertainty, with a range of interrelated, dynamic, sources, issues, and management strategies. Scientific uncertainty included diagnostic and prognostic ambiguity and limited clinician knowledge of TBDs. Practical uncertainty focused on logistics of maintaining care teams across medical disciplines. Personal uncertainty encompassed self-identity, life goals, and relationship expectations post-diagnosis. Scientific, practical, and personal issues of uncertainty were interrelated: limited scientific knowledge of TBDs gave rise to practical and personal issues, which created psychosocial burdens including anxiety and barriers to relationship formation and health decision-making. Individuals with TBDs and their caregivers reported multiple evolving management strategies which included information-seeking and sharing, organizing aspects of uncertainty, stress-relief techniques, and connecting with peer support. In study 2, TBD social media posts included information exchange regarding diagnostic and prognostic uncertainty. Overall, post creators were white, female, parents of patients with TBDs. Study 3 revealed that most participants engaged in online support but expressed contradictory feelings about online resources. Perceived barriers included distrust of online platforms and lack of targeted resources. Conclusions: Medical uncertainty is a burden for patients with TBDs and their caregivers, but uncertainty sources and issues may change over time, impacting the utility of different management strategies. The intractability, continuity, variety, and fluctuation of medical uncertainty throughout the illness experience creates barriers to management peculiar to TBDs and may limit the effectiveness of uncertainty-management approaches developed in other rare and high-risk disease contexts.Doctor of Philosoph

Persons with disabilities in Robeson County, North Carolina : an action-oriented community diagnosis : findings and next steps of action

The following document is a detailed report of an Action Oriented Community Diagnosis (AOCD) completed by a five-member team of graduate students at University of North Carolina at Chapel Hill, School of Public Health, Department of Health Behavior and Health Education. This AOCD was conducted in order to gain an understanding of the cultural, social, economic, and health experiences of persons with disabilities and their families in Robeson County, North Carolina. Through the AOCD process, the team and community participants identified resources, strengths, and challenges that exist in Robeson County for persons with disabilities and their families, and developed action steps to address several of the challenges. Over the course of seven months from October 2007 to April 2008, the team worked to learn more about the community. Through conducting secondary data, attending community events, and conducting 28 in-depth interviews with 20 service providers and eight community members and three focus groups with 13 community members, team members gained valuable insight into everyday life in this community. The team developed a coding system to analyze the data collected and to identify recurring themes related to living with disabilities in Robeson County. In April 2008, the team organized a community forum at the O.P. Owens Building in Lumberton, the county seat, to present findings from the AOCD process to over 43 community members and service providers. At the forum, participants had the opportunity to discuss major themes that emerged from the team‘s data analysis, and to work together in small groups to create specific action steps to address those themes. The themes and action steps discussed at the forum were: 1. Transportation: There is a lack of accessible, reliable, and affordable transportation options in Robeson County. This limits quality of life, access to services, and employment for people living with disabilities. Attend County Commissioner meetings. Attend Mayor‘s Committee for the Disabled meetings. Call SEATS to ask about safety procedures, weight limits, and wheelchair accessible vans. Research how other communities with similar demographics and geographies have addressed transportation for persons with disabilities. Look into recreating the voucher program. Create an education campaign for service providers, wheelchair vendors, persons with disabilities, and the general community about transportation issues faced by persons with disabilities. Talk to physicians and physical therapists about transportation issues faced by persons with disabilities, including how selection of wheelchair can affect opportunities for public transportation. 2. Services Communication and Information: Although many services exist for persons with disabilities in Robeson County, there is a lack of a centralized information system accessible to people with low literacy and without access to computer technology. There is also a lack of partnership between service providers. This causes confusion and limited knowledge about services for service providers, persons with disabilities and their families. Contacting the Healing Lodge in the county to facilitate a discussion with those members and connect them to disability resources. Service providers presenting at healthcare to educate the community about services available. Finding out more about the 211 telephone information service provided by United Way. Collaborate with other agencies on the Partnership for Community Health booklet by letting Partnership know about more providers. 3. Recreation: There is an interest among persons with disabilities to become physically active. There is a lack of recreational opportunities and facilities for persons with disabilities in Robeson County. This limits social and recreational interaction and creates barriers for physical fitness. Advertise and increase awareness of disabilities and recreational opportunities for persons with disabilities in the local newspapers. Form a support group for persons with disabilities to increase awareness of the need for recreation for persons with disabilities. Hold first meeting of support group where the ADA laws that ensure persons with disabilities access to accessible public recreational opportunities are explained. Organize monthly activities for persons with disabilities. 4. Awareness: There is limited awareness among community members and service providers about persons with disabilities, especially “invisible disabilities,” such as chronic illness and substance abuse. This contributes to feelings of isolation and disrespect that diminish the quality of life for persons with disabilities and caregivers. Train healthcare workers in disability awareness by having them use different assistance devices, such as wheelchairs, for a day. Be vocal as persons with disabilities and share experiences and perspectives with others. Advocate for disability awareness by integrating discussions of disability in other venues. Educate employers about ADA rights. 5. Paying for services: Although many people living with disabilities in Robeson County are supported by Medicaid, many others are uninsured and have difficulty paying for medical services. This causes people to delay seeking medical help and decreases the reach and effectiveness of existing resources. Action steps were not developed for this group as there were not enough attendees who participated in developing action steps around this theme. Following the forum, the team completed this final report with recommendations for the community based on their experiences throughout the process and the outcomes from the community forum. The final recommendations are summarized below: 1. Service providers for persons with disabilities in Robeson County should continue to update the resource list that the team has compiled and included in this document and should make it available in multiple formats designed for the those with vision loss, low literacy, and without access to computer technology. 2. Service providers for persons with disabilities in Robeson County should create a centralized referral system that could direct its users to different services, including medical and social services, as suggested by several service providers and community members. This could be started by further publicizing the existing 211 telephone directory. 3. Community members and service providers should advocate for the expansion of the county transit program (SEATS), including more accessible vans and drivers, affordable fares, and weekend routes. 4. Service providers should hold annual public events such as a community forum or health fair to increase awareness of disabilities and services and resources available to persons with disabilities in Robeson County. This can be hosted by a local health agency or an advocacy organization such as the Mayor‘s Committee for the Disabled. 5. Community members and service providers should advocate for the perspectives of persons with disabilities in public meetings about county development, including new and existing projects. Persons with disabilities and their supporters should be aware of local news, attend town, city or county meetings whenever possible, and share their views and ideas with the larger community. The Mayor‘s Committee for the Disabled should support persons with disabilities in these efforts by publicizing their meeting times and by helping persons with disabilities access schedules of other local government meetings and public hearings. The team hopes that this report, the action steps, community member and service provider connections, and the strong sense of initiative for change that emerged from this project and the community forum will continue to build on the strengths of this community. Ultimately, the team also hopes that the entire AOCD process and this final report contribute to future improvements not only for persons with disabilities, but for all residents of Robeson County.Master of Public Healt

Providing Health Care Information to Refugees in Cairo: Questions of Access and Integration

This paper began as an investigation into medical services currently offered to refugees in Cairo. The ultimate goal was to update the medical section of the Refugee Yellow Pages , an on-line information resource available through the Forced Migration and Refugee Studies department at the American University in Cairo. The impetus for this project was the idea that the provision of up-to-date listings of service providers was vital to refugees’ access to social services, including health care. In the course of my research I discovered that while information does play a large role in an individual’s ability to access health care, other barriers are in place in Cairo that nearly obscure any gains that could be made through updating the Refugee Yellow Pages. This paper will investigate the responsibility for health care provision, different health services currently available to refugees in Cairo, the access barriers faced by refugees, and the question of integration. It will address specifically the differences and similarities between the experience of refugees and nationals vis-à-vis the Egyptian health system and issues of refugee health care that may be difficult to resolve. Towards the end of the paper, I will suggest a multi-faceted plan of action to provide more accurate information resources that address not only available services, but also the barriers to quality care