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This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services—the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment ( N  = 20) or wait-list control ( N  = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.

Patient navigation (PN) programs are being widely implemented to reduce disparities in cancer care for racial/ethnic minorities and the poor. However, few systematic studies cogently describe the processes of PN. We qualitatively analyzed 21 transcripts of semistructured exit interviews with three navigators about their experiences with patients who completed a randomized trial of PN. We iteratively discussed codes/categories, reflective remarks, and ways to focus/organize data and developed rules for summarizing data. We followed a three-stage analysis model: reduction, display, and conclusion drawing/verification. We used ATLAS.ti_5.2 for text segmentation, coding, and retrieval. Four categories of factors affecting cancer care outcomes emerged: patients, navigators, navigation processes, and external factors. These categories formed a preliminary conceptual framework describing ways in which PN processes influenced outcomes. Relationships between processes and outcomes were influenced by patient, navigator, and external factors. The process of PN has at its core relationship-building and instrumental assistance. An enhanced understanding of the process of PN derived from our analyses will facilitate improvement in navigators’ training and rational design of new PN programs to reduce disparities in cancer-related care.

Background In Germany, the guardianship system provides adults who are no longer able to handle their own affairs a court-appointed legal representative, for support without restriction of legal capacity. Although these representatives only rarely are qualified in healthcare, they nevertheless play decisive roles in the decision-making processes for people with dementia. Previously, we developed an education program (PRODECIDE) to address this shortcoming and tested it for feasibility. Typical, autonomy-restricting decisions in the care of people with dementia—namely, using percutaneous endoscopic gastrostomy (PEG) or physical restrains (PR), or the prescription of antipsychotic drugs (AP)—were the subject areas trained. The training course aims to enhance the competency of legal representatives in informed decision-making. In this study, we will evaluate the efficacy of the PRODECIDE education program. Methods A randomized controlled trial with a six-month follow-up will be conducted to compare the PRODECIDE education program with standard care, enrolling legal representatives ( N  = 216). The education program lasts 10 h and comprises four modules: A, decision-making processes and methods; and B, C and D, evidence-based knowledge about PEG, PR and AP, respectively. The primary outcome measure is knowledge , which is operationalized as the understanding of decision-making processes in healthcare affairs and in setting realistic expectations about benefits and harms of PEG, PR and AP in people with dementia. Secondary outcomes are sufficient and sustainable knowledge and percentage of persons concerned affected by PEG, FEM or AP. A qualitative process evaluation will be performed. Additionally, to support implementation, a concept for translating the educational contents into e-learning modules will be developed. Discussion The study results will show whether the efficacy of the education program could justify its implementation into the regular training curricula for legal representatives. Additionally, it will determine whether an e-learning course provides a valuable backup or even alternative learning strategy. Trial registration TRN: ISRCTN17960111 , Date: 01/06/2017.

Although internal medicine (IM) physicians accept public advocacy as a professional responsibility, there is little evidence that IM training programs teach advocacy skills. The prevalence and characteristics of public advocacy curricula in US IM residency programs are unknown. To describe the prevalence and characteristics of curricula in US IM residencies addressing public advocacy for communities and populations; to describe barriers to the provision of such curricula. Nationally representative, web-based, cross-sectional survey of IM residency program directors with membership in an academic professional association. A total of 276 IM residency program directors (61%) responded between August and December 2022. Percentage of US IM residency programs that teach advocacy curricula; characteristics of advocacy curricula; perceptions of barriers to teaching advocacy. More than half of respondents reported that their programs offer no advocacy curricula (148/276, 53.6%). Ninety-five programs (95/276, 34.4%) reported required advocacy curricula; 33 programs (33/276, 12%) provided curricula as elective only. The content, structure, and teaching methods of advocacy curricula in IM programs were heterogeneous; experiential learning in required curricula was low (23/95, 24.2%) compared to that in elective curricula (51/65, 78.5%). The most highly reported barriers to implementing or improving upon advocacy curricula (multiple responses allowed) were lack of faculty expertise in advocacy (200/276, 72%), inadequate faculty time (190/276, 69%), and limited curricular flexibility (148/276, 54%). Over half of US IM residency programs offer no formal training in public advocacy skills and many reported lack of faculty expertise in public advocacy as a barrier. These findings suggest many IM residents are not taught how to advocate for communities and populations. Further, less than one-quarter of required curricula in public advocacy involves experiential learning.

Background Health advocacy is considered to be a core competence for physicians, but it remains unclear how the health advocacy role, despite being described in overarching competency frameworks, is operationalized in undergraduate medical education (UME). This study aimed to identify how health advocacy is conceptualized and taught in undergraduate medical curricula. Methods We performed a qualitative analysis of curriculum documents from all eight medical schools in the Netherlands, all of which offered competency-based UME. Thematic analysis was used to code all the documents and generate themes on health advocacy conceptualization and teaching. To categorize the emerging themes, we used the framework of Van Melle et al. for evaluating the implementation of competency-based medical educational programs. Results Health advocacy was mostly conceptualized in mission statements about social responsibility of future physicians, related to prevention and promoting health. We found key concepts of health advocacy to be taught mainly in public health and social medicine courses in the bachelor stage and in community-based clerkships in the master stage. Specific knowledge, skills and attitudes related to health advocacy were taught mostly in distinct longitudinal learning pathways in three curricula. Conclusion Health advocacy is conceptualized mostly as related to social responsibility for future physicians. Its teaching is mostly embedded in public health and social medicine courses and community-based settings. A wider implementation is warranted, extending its teaching to the full width of medical teaching, with longitudinal learning pathways providing a promising route for more integrative health advocacy teaching.

In 2022, the Accreditation Council for Graduate Medical Education updated its competencies for residents in all specialties to include health policy advocacy. A recent systematic review shows that while a growing number of residency curricula include policy advocacy, few programs join in policy advocacy efforts with community partners. To create a community-engaged advocacy curriculum for residents that is part of a mutually beneficial partnership with community-based organizations (CBOs). A university-affiliated residency program and CBOs within a large US city. Eighty internal medicine residents and local CBO clients and staff. The curriculum was delivered over 2 years and included advocacy skills sessions, service learning and reflection at the CBOs, and direct policy advocacy. Residents and CBO partners were surveyed to gather quantitative and qualitative data. Residents perceived that the program enhanced their confidence and skills in community engagement and policy advocacy. All CBO staff agreed that the partnership advanced the CBO's mission, residents' volunteering provided beneficial service, and residents had a meaningful impact on their advocacy efforts. Our community-engaged advocacy curriculum successfully met its aims and has contributed to policy change. Future directions include building a statewide coalition of residents and CBOs.

There have been increasing calls for community–academic partnerships to enhance the capacity of partners to engage in policy advocacy aimed at eliminating health disparities. Community-based participatory research (CBPR) is a partnership approach that can facilitate capacity building and policy change through equitable engagement of diverse partners. Toward this end, the Detroit Community–Academic Urban Research Center, a long-standing CBPR partnership, has conducted a policy training project. We describe CBPR and its relevance to health disparities; the interface between CBPR, policy advocacy, and health disparities; the rationale for capacity building to foster policy advocacy; and the process and outcomes of our policy advocacy training. We discuss lessons learned and implications for CBPR and policy advocacy to eliminate health disparities.

Objective: The aim of this study was to explain the role of patient advocacy in the Advance Care Planning (ACP-ing) process. Nurses rate prolonging the dying process with inappropriate measures as their most disturbing ethical issue and protecting patients' rights to be of great concern (Johnston et al 2002). Paradoxically ethical codes assume nurses have the autonomy to uphold patients' health-care choices. Advance Directives (AD) designed to improve end-of-life care are poorly taken up and acute hospitals are generally not geared for the few they receive. The Respecting Patient Choices Program (RPCP) improves AD utilisation through providing a supportive framework for ACP-ing and primarily equipping nurses as RPC consultants. Assisting patients with this process requires attributes consistent with patient advocacy arising out of nursing's most basic tenet, the care of others. Design: Likert Scales survey administered pre and six months post-intervention to pilot and control groups, with coinciding focus groups. Setting: Selected wards in an acute care public hospital in South Australia. Subjects: Nurses on the palliative care, respiratory, renal and colorectal pilot wards and the haem-oncology, coronary care, cardiology and neurology/geriatric control wards. Intervention: The RPCP during the 2004-2005 South Australian pilot of the (RPCP). Main outcomes: The organisational endorsement of ACP-ing gave nurses the autonomy to be patient advocates with respect to end-of-life care, reconciling clinical practice to their code of ethics and easing distress about prolonging the dying process inappropriately. Results: Statistically significant survey results in the post-intervention group showed nurses experienced: encouragement to ensure patients could make informed choices about their end-of-life treatment (84%); the ability to uphold these wishes in practice (73%); and job satisfaction from delivering appropriate end-of-life care (67%); compared to approximately half (42- 55%) of respondents in the pre-intervention and control groups. Focus group participants shared that it used to be hard to advocate for patients, but now they could act legitimately and felt ethically comfortable about ensuing end-of-life-care. Conclusion: Findings suggested patient advocacy, fostered by the supportive RPC environment, effectuates the ACP-ing process. It is recommended that the RPCP should be recognised and developed as integral to promoting quality end-of- life assurance and associated job satisfaction. (author abstract)