Dataset Information

A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation.

ABSTRACT: BACKGROUND:Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. ACPTalk aimed to provide religion-specific advance care planning content and complement existing resources. OBJECTIVE:The purpose of this paper was to utilize the context, input, process, and product (CIPP) framework to conduct a formative and summative evaluation of ACPTalk. METHODS:The CIPP framework was used, which revolves around 4 aspects of evaluation: context, input, process, and product. Context: health professionals' solutions for the website were determined through thematic analysis of exploratory key stakeholder interviews. Included religions were determined through an environmental scan, Australian population statistics, and documentary analysis of project steering committee meeting minutes. Input: Project implementation and challenges were examined through documentary analysis of project protocols and meeting minutes. Process: To ensure religion-specific content was accurate and appropriate, a website prototype was built with content review and functionality testing by representatives from religious and cultural organizations and other interested health care organizations who completed a Web-based survey. Product: Website analytics were used to report utilization, and stakeholder perceptions were captured through interviews and a website survey. RESULTS:Context: A total of 16 key stakeholder health professional (7 general practitioners, 2 primary health nurses, and 7 palliative care nurses) interviews were analyzed. Website solutions included religious and cultural information, communication ideas, legal information, downloadable content, and Web-based accessibility. Christian and non-Christian faiths were to be included in the religion-specific content. Input: Difficulties gaining consensus on religion-specific content were overcome by further state and national religious organizations providing feedback. Process: A total of 37 content reviewers included representatives of religious and cultural organizations (n=29), health care (n=5), and community organizations (n=3). The majority strongly agree or agree that the content used appropriate language and tone (92%, 34/37), would support health professionals (89%, 33/37), and was accurate (83%, 24/29). Product: Resource usage within the first 9 months was 12,957 page views in 4260 sessions; majority were (83.45%, 3555/4260) from Australia. A total of 107 Australian-based users completed the website survey; most felt information was accurate (77.6%, 83/107), easy to understand (82.2%, 88/107), useful (86.0%, 92/107), and appropriate (86.0%, 92/107). A total of 20 nurses (general practice n=10, palliative care n=8, and both disciplines n=2) participated in stakeholder interviews. Qualitative findings indicated overall positivity in relation to accessibility, functionality, usefulness, design, and increased knowledge of advance care planning. Recommended improvements included shortened content, a comparable website for patients and families, and multilingual translations. CONCLUSIONS:The CIPP framework was effectively applied to evaluate the development and end product of an advance care planning website.Although overall findings were positive, further advance care planning website development should consider the recommendations derived from this study.

SUBMITTER: Pereira-Salgado A

PROVIDER: S-EPMC5928329 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

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A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation.

Pereira-Salgado Amanda A Mader Patrick P O'Callaghan Clare C Boyd Leanne L

JMIR research protocols 20180416 4

<h4>Background</h4>Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. A ...[more]

PMID: 29661749

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Project description:Importance:Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings. Objective:To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. Design, Setting, and Participants:This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year. Interventions:Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. Main Outcomes and Measures:The primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. Results:The mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P?=?.04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores; P <.001 at each follow-up). Conclusions and Relevance:Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources. Trial Registration:clinicaltrials.gov Identifier: NCT01550731.

Project description:Background:The Mississippi Community Research Fellows Training Program (MSCRFTP) is a 15-week program conducted in Jackson, MS, USA consisting of training in the areas of evidence-based public health, research methods, research ethics, and cultural competency. The purpose of the program was to increase community knowledge and understanding of public health research, develop community-based projects that addressed health disparity in the participants' community, increase individual and community capacity, and to engage community members as equal partners in the research process. Methods:A comprehensive evaluation of the MSCRFTP was conducted that included both quantitative and qualitative methods. All participants were asked to complete a baseline, midterm, and final assessment as part of their program requirements. Knowledge gained was assessed by comparing baseline assessment responses to final assessment responses related to 27 key content areas addressed in the training sessions. Assessments also collected participants' attitudes toward participating in research within their communities, their perceived influence over community decisions, and their perceptions of community members' involvement in research, satisfaction with the program, and the program's impact on the participants' daily practice and community work. Results:Twenty-one participants, the majority of which were female and African-American, completed the MSCRFTP. Knowledge of concepts addressed in 15 weekly training sessions improved significantly on 85.2% of 27 key areas evaluated (p?<?0.05). Two mini-grant community based participatory research projects proposed by participants were funded through competitive application. Most participants agreed that by working together, the people in their community could influence decisions that affected the community. All participants rated their satisfaction with the overall program as "very high" (76.2%, n?=?16) or "high" (23.8%, n?=?5). Conclusion:The evaluation of the MSCRFTP demonstrates that participants have the necessary knowledge to engage as research partners, and the pilot projects provided an opportunity for application of this objective to be realized. Overall, the MSCRFTP was an intervention that assisted community members in identifying their communities' strengths and weaknesses, interpret knowledge in a meaningful way, and create a self-reflective community of inquiry for change.

Project description:Background: Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP). Objective: The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP. Methods: A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis. Findings: Latino patients with advanced cancer (n = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs. Conclusion: Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients’ prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.

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A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation.

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A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation.

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