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A roadmap to behavioral intervention research in hospice and palliative care -- The foundations of behavioral intervention research in hospice and palliative care -- Defining and analyzing the problem -- Designing an intervention -- Planning, pilot-testing, and refining the intervention -- Conducting a clinical trial -- Disseminating findings and translating the intervention.

ABSTRACTPrivacy and confidentiality of personal medical information are cornerstones of ethical clinical care and ethical research. But real‐world research has challenged traditional ways of thinking about privacy and confidentiality of information. In today's world of "big data" and learning health care systems, researchers and others are combining multiple sources of information to address complex problems. We present a case study that highlights the ethical concerns that arise when a patient who is employed by an academic medical center learns through a research invitational letter that her private information was accessed at this center without her consent. We discuss the ethical challenges of balancing patient privacy with advancing clinical research and ask, what level of privacy and confidentiality can and should patients expect from their clinician providers, fellow research colleagues, and institutions?

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

Purpose. Examine differences in trust of health information sources between the oldest old and young/middle old. Design. Cross-sectional survey using convenience sampling. Setting. Eleven retirement communities. Subjects. Older adults ≥ 65 years (N = 353). Measures. Self rated trust in health information sources. Analysis. Mann-Whitney U-test or Fisher exact test to compare trust between age groups; multinomial ordered logistic regression analyses to model trust in Internet information sources. Results. The overall survey response rate was 26.6%. Differences in trust were identified between oldest old (n = 108) and young/middle old (n = 245) for pharmacist (p < .05), Internet (p < .001), television (p < .05), radio (p < .001), and newspaper (p < .05) sources. In the oldest old, we found associations between levels of trust in Internet sources and frequency of Internet use (β = 4.13, p < .001). Conclusion. Understanding where differences in trust arise can inform the design of resources to support the information-seeking process. When planning widespread distribution of health information to these distinct groups, program developers need to consider these differences.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network—especially other family—is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.

Objective: We aimed to develop a telehealth network to deliver postdiagnosis cancer care clinical services and education to American Indian and Alaska Native patients, their families, and their healthcare providers. We also sought to identify the challenges and opportunities of implementing such a telehealth-based application for this rural and underserved population. Materials and Methods: We followed a participatory formative evaluation approach to engage all stakeholders in the telehealth network design and implementation. This approach allowed us to identify and address technical and infrastructure barriers, lack of previous experience with telehealth, and political, legal, and historical challenges. Results: Between September 2006 and August 2009, nine tribal clinics in Washington and 26 clinical sites in Alaska had participated in the telehealth network activities. Network programming included cancer education presentations, case conferences, and cancer survivor support groups. Twenty-seven cancer education presentations were held, with a total provider attendance of 369. Forty-four case conferences were held, with a total of 129 cases discussed. In total, 513 patient encounters took place. Keys to success included gaining provider and community acceptance, working closely with respected tribal members, understanding tribal sovereignty and governance, and working in partnership with cultural liaisons. Conclusion: The telehealth network exceeded expectations in terms of the number of participating sites and the number of patients served. Following a participatory formative evaluation approach contributed to the success of this telehealth network and demonstrated the importance of community involvement in all stages of telehealth system design and implementation.

This item also falls under AAAI copyright. For more information, please visit http://www.aaai.org/ojs/index.php/aimagazine/index ; A one of a kind project based on the concept of aging in place is in progress at the University of Missouri (MU). This project required legislation in 1999 and 2001 to be fully realized. A specialized home health agency was developed by the MU Sinclair School of Nursing specifically to help older adults age in place. In 2004, TigerPlace, a specially designed independent living environment, was built by Americare Corporation of Sikeston, Missouri, a leading long-term care company. TigerPlace was developed as a true partnership between the University of Missouri and Americare Corporation. This partnership allows for unique student and research projects. ; This research was supported by the U.S. Administration on Aging grant #90AM3013 and National Science Foundation ITR grants IIS-0428420 and IIS-0703692.

This is a preprint of an article whose final and definitive form has been published in the Journal of Housing for the Elderly 2008, copyright Taylor & Francis. Journal of Housing for the Elderly is available online at: http://www.informaworld.com/openurl?genre=article&issn=0276-3893&volume=22&issue=1&spage=66 DOI:10.1080/02763890802097045 ; The Aging in Place Project at the University of Missouri (MU) required legislation in 1999 and 2001 to be fully realized. An innovative home health agency was initiated by the Sinclair School of Nursing specifically to help older adults age in place in the environment of their choice. In 2004, an innovative independent living environment was built and is operated by a private long term care company, as a special facility where residents can truly age in place and never fear being moved to a traditional nursing home unless they choose to do so. With care provided by the home care agency with registered nurse care coordination services, residents receive preventative and early illness recognition assistance that have markedly improved their lives. Evaluation of aging in place reveal registered nurse care coordination improves outcomes of cognition, depression, activities of daily living, incontinence, pain, and shortness of breath as well as delaying or preventing nursing home placement. Links with MU students, faculty, and nearly every school or college on campus enrich the lives of the students and residents of the housing environment. Research projects are encouraged and residents who choose to participate are enjoying helping with developing cutting technology to help other seniors age in place. ; The authors wish to acknowledge the organizations and staff who made the AIP project possible: Americare of Sikeston, MO; TigerPlace staff; Sinclair Home Care staff; MU Sinclair School of Nursing faculty and deans; MU administration; Missouri Department of Health and Senior Services staff; Missouri state legislature (in particular, Tim Harlan of Columbia, MO); and all the friends and families who have supported those who implemented this pioneering effort.