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Developing and testing a web-based platform for antiretroviral therapy ART adherence support among adolescents and young adults AYA living with HIV
Dunn-Navarra A., Gormley M., Liang E., Loughran C., Vorderstrasse A., Garcia D.R., Rosenberg M.G., Fletcher J., Goldsamt L.A.
Q3
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Describe the development and testing of a web-based platform for antiretroviral treatment (ART) adherence support among HIV+ adolescents and young adults (AYA) in a randomized controlled trial (RCT).A seven-member multi-disciplinary team operationalized the flat, password protected, web-based platform. Manualized protocols guided the objectives and content for each of the eight web-based sessions. Team members evaluated usability and content validity. Client satisfaction and perceived ease of use was evaluated with the first ten HIV+ AYA participants.The web-based platform was developed, evaluated, refined, implemented and pilot tested between September 2020 to April 2022. Usability was rated as high; the evaluation of content validity showed an excellent fit between session content and objectives. HIV+ AYA participants (mean age = 24.2 years) were satisfied with the quality, type, and amount of support/education received, and found the platform easy to use, operate, and navigate. Average time spent per session was 6.5 min.Findings support the usability, validity, acceptability, and feasibility of this web-based platform for ART adherence support among HIV+ AYA.Our research and findings are responsive to research gaps and the need for transparency in the methodological development and testing of web-based control arms for ART adherence support among HIV+ AYA.
Nurturing compassion and cultural humility in health professions students through a brief mindfulness practice
Or J., Anderson A.M., Golba E.A.
Right-sizing interprofessional team training for serious-illness communication: A strength-based approach
Eskola L., Silverman E., Rogers S., Zelenski A.
Q3
Palliative care communication skills help tailor care to patients' goals. With a palliative care physician shortage, non-physicians must gain these serious illness communication skills. Historically, trainings have targeted physician-only groups; our goal was to train interprofessional teams. Workshops were conducted to teach palliative care communication skills and interprofessional communication. Participants completed surveys which included questions from the Interpersonal Reactivity Index, the Ekman Faces tool, the Consultation and Relational Empathy measure, open-ended questions about empathy, and measures of effective interprofessional practice. Participants felt the workshop improved their ability to listen (p < 0.001), understand patients' concerns (p < 0.001), and show compassion (p = 0.008). It increased the perceived value of peer observation (p < 0.001) and ability to reflect (p = 0.02) during complex conversations. Different types of professionals adopted different communication goals, though all affirmed the importance of active listening. Participants felt they improved their ability to work within an interprofessional team. The course effectively trained 71 clinicians, the majority non-physicians, in serious illness communication and interprofessional team communication skills, and could be reproduced in similar settings. We adapted an approach common to physician-only trainings to diverse interprofessional groups, added a team-based component using Applied Improvisation, and demonstrated its effectiveness.
Accurate and inaccurate beliefs about cancer risk factors among Spanish-preferring adults in the United States
King A.J., Lyons B.A., Rivera Y.M., Kogan M., Hernandez L.H., Liao Y., Kaphingst K.A.
Q3
To characterize inaccurate and accurate beliefs about cancer risk factors held among Spanish-preferring adults in the United States. From a national probability panel, we surveyed 196 Hispanic adults who prefer completing questionnaires in Spanish. We also used data from a representative sample of 1200 adults in the US to compare belief acceptance. Many less accepted accurate beliefs about cancer risk factors related to topics like fruit/vegetable consumption, weight loss, and alcohol use. Several inaccurate beliefs were widely held, with some being more accepted in the Spanish-preferring sample than the general US adult sample. Higher levels of self-reported media literacy and information scanning associated with more acceptance of both accurate and inaccurate beliefs. Access to the internet at home associated with discernment between accurate and inaccurate beliefs about cancer risk factors. Acceptance of accurate beliefs and rejection of inaccurate beliefs varied across potential cancer risk factors. Future Spanish-language public health messaging should address these belief inconsistencies when providing up-to-date cancer-related recommendations or correcting inaccurate information in the public communication environment. Our study provides comprehensive information about cancer beliefs among Spanish-preferring adults in the United States, which was not previously available, and find that media literacy is a concept likely to be important to consider when putting together intervention tools to combat misinformation.
Acceptability and usability of the planning advance care together (PACT) website for improving patients' engagement in advance care planning
Walsh C.A., Miller S.J., Smith C.B., Prigerson H.G., McFarland D., Yarborough S., Santos C.D., Thomas R., Czaja S.J., RoyChoudhury A., Chapman-Davis E., Lachs M., Shen M.J.
Q3
Most prior advance care planning (ACP) interventions lack integration of the social context of patients' ACP process, which patients indicate is critically important. The current study developed the Planning Advance Care Together (PACT) website to foster inclusion of loved ones in the ACP process. To provide feedback about the PACT website, patients with advanced cancer (N = 11), their caregivers (N = 11), and experts (N = 10) participated in semi-structured interviews. Patients and caregivers also completed standardized ratings of acceptability and usability. Overall, patient (n = 11) and caregiver (n = 11) ratings of acceptability and usability of the website exceeded benchmark cut-offs (≥24 on the Acceptability E-Scale and ≥ 68 on the System Usability Scale). Patients, caregivers, and experts liked the topic of ACP but felt that it could be emotionally challenging. They recommended focusing more on planning and less on end of life. They appreciated being able to include loved ones and recommended adding resources for caregivers. Study findings support the preliminary usability and acceptability of the PACT website. Findings will be used to inform a modified prototype of the PACT website that is interactive and ready for field testing with patients with advanced cancer and their loved ones. We utilized a novel application of the shared mind framework to support patients with advanced cancer in engaging their loved ones in the ACP process.
Development and refinement of a communication guide to help young adults in Texas reconnect and reduce loneliness
Donovan E.E., Shaffer A., Kaiser E., Quaack K., Mackert M., Shi W., De Luca D.
Q3
Loneliness among young people is a contemporary public health crisis exacerbated by the COVID-19 pandemic. The present research examined the development of a modest yet meaningful health communication intervention resource that would become an asset in a larger health campaign: a communication guide aimed at helping young people reach out and reconnect with others. Study One established the need for a loneliness intervention in Texas with survey data (N = 795). A communication guide was developed based on research and theory. Study Two employed focus group interviews with potential audience members (N = 31) to critically assess and inform revisions to the communication guide. Study One results indicated that a substantial proportion of young adult Texans felt as though their social connection had decreased and their loneliness had increased since the onset of the pandemic. Themes in focus group responses from Study Two suggested several strengths of the communication guide and some opportunities for revision. A communication guide with tips for reconnecting could be a valuable tool to empower young people and promote social connection. This study involved the development and refinement of a new communication resource that was informed by a priority audience of a major health communication campaign.
“Addressing barriers to digital health readiness among a Latino population”
González K.M., Gentsch A.T., Torres C., Borne E., Hendry J., Pappaterra L., Salib M., Worster B., Gravier-Leon S., Rising K.L.
Q3
There are many potential barriers to an individual's readiness and ability to use telehealth, including technology access, trust and knowledge. This qualitative study was a partnership between Jefferson and Esperanza Health Center (EHC), focused on addressing barriers to digital readiness among the Latino population served by EHC.
Patient's informational needs and outreach preferences: A cross-sectional survey study in patients with hepatobiliary malignancies
Stokes S., Haider M., Vadaparampil S.T., Levitt C., Hardy O., Kim R., Castillo D.L., Denbo J., Fleming J.B., Anaya D.A.
Q3
Hepatobiliary tumors have evolving management guidelines. Patient educational needs and interest in community engagement are unknown. This study serves as a needs assessment. A prospective, needs assessment, survey study of hepatobiliary patients was performed (2016–2019). Surveys (n = 169) were distributed covering three domains of interest: informational needs, interest in outreach, and engagement preferences. Seventy patients completed the survey (response rate = 41.4%). Most patients had completed surgical treatment (84.3%). Cancer treatment was ranked as their primary topic of interest (n = 39, 55.7bold%), followed by symptom management, nutrition, and survivorship. Most patients did not participate in screening (n = 57, 81.4%), though were interested in learning more about these programs. Thirty-nine patients (55.7%) stated they would want to receive more education. Only 17 (24.3%) were interested in attending in-person events. Patients preferred online methods for education (n = 49, 70%). While patients were aware of their case presentation at tumor board, only 38 (54.3%) felt well-informed about recommendations. Multidisciplinary care is complex and difficult for patients to navigate. Most patients have interest in educational resources and prefer online modalities. Patients understand multidisciplinary tumor boards, but communication could be improved. These data inform a new, innovative, approach to outreach efforts in this population.
Examining technology use and mental health among parents with newborns in the intensive care unit during the COVID-19 pandemic: A cross-sectional study
Ross J.L., Cagino S.G., Denefrio C.L.
Q3
To investigate the relationship between pandemic-related stressors, mental health, and technology use among parents of hospitalized infants during the COVID-19 pandemic. A cross-sectional study of 47 participants who had an infant in the Neonatal Intensive Care Unit (NICU) during the pandemic was completed. Participants ranked several statements on a Likert scale to assess mental health, technology use, and COVID-19-related stress during their infant's stay in the NICU. Mental health wellness scores were negatively associated with COVID-19-related stress (rs − 0.40, p = .015). The most prevalent stressor was hospital visitation restriction. Higher COVID-19-related stress was associated with greater use of text and video chat [(rs 0.35, p 0.016) and (rs 0.33, p = .025)]. Enjoyment of technology use and access to technology were positively associated with higher mental health wellness scores [(rs 0.42, p = .003) and (rs 0.38, p = .009)]. Social uses of technology were valuable in a cohort of parents with infants hospitalized during the COVID-19 pandemic. Technology is a tool that can help parents cope with the stress of having a hospitalized infant. Digital literacy and technology access should be promoted in the post-pandemic landscape to help parents of infants in the NICU attain more benefit from these resources.
An observational study of dialogue about uncertainty in clinician-family counseling conversations following prenatal diagnosis of complex congenital heart disease classifications
Harris K.W., Schweiberger K., Kavanaugh-McHugh A., Arnold R.M., Merlin J., Chang J.C., Kasparian N.A.
Q3
Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations to identify the topics of uncertainty discussed. In this observational, qualitative study, initial fetal cardiology consultations were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively and deductively developed and applied. This content analysis focused on uncertainty-related codes and associated themes. During 19 consultations including five clinicians, 13 different cardiac diagnoses were discussed (seven with high mortality risk). Median consultation length was 37 min (IQR: 26–51), with only 11% of words spoken by families. On average, 51% of total words spoken focused on uncertainty in relation to cardiac diagnosis, etiology, comorbidities, prognosis, childbirth, therapeutics, and logistics. Family-initiated discussion on uncertainty largely focused on childbirth and pregnancy and postpartum logistics. Half of dialogue within initial fetal cardiology encounters discussed uncertainty surrounding prenatally diagnosed cCHD. Parent and clinician perspectives should be gathered on the essential content and optimal delivery of uncertainty-related topics. This study is conceptually and methodologically innovative as one of the first to examine audio-recorded dialogue between fetal cardiology clinicians and families.
Black Americans' perceptions of Alzheimer's disease, a healthy brain, and strategies for brain health promotion
Eliacin J., Polsinelli A., Cameron K.A., Saykin A.J., Wang S.
Q3
Lack of awareness of Alzheimer's disease (AD) among Black Americans may undermine their ability to identify potential AD risk. We examined Black Americans' perceptions and knowledge of AD, and views of a healthy brain, which may contribute to the development of effective and culturally sensitive strategies to address racial disparities in AD. We conducted a mixed-methods study, integrating a cross-sectional survey of 258 older (>55 years) Black participants and qualitative interviews with a sub-sample of N = 29. Both data sets were integrated to inform the results. Participants endorsed having little knowledge of AD. While most participants reported practicing a healthy lifestyle to promote a healthy brain, the range of activities listed were limited. Participants made several suggestions to increase AD awareness, which includes using AD educational materials containing information that would benefit the whole family, not only older adults. Outreach approaches that address both individual behaviors and structural factors were also encouraged. Our findings identify ongoing needs to improve AD awareness among traditionally under-represented groups. The study utilized novel approaches to examine participants' perspectives of AD that included a diverse sample of research naïve participants, and integrated exploration of participants' views of AD and brain health.
Making end-of-life health disparities in the U.S. visible through family bereavement narratives
Taladay-Carter C.
Q3
End-of-life experiences can have important implications for the meaning-making and communication of bereaved family members, particularly due to (in)access and barriers to formal healthcare services (i.e., palliative care and hospice). Grounded in Communicated Narrative Sense-Making theory, this study extends knowledge about how the stories told about end-of-life by bereaved family members affect and reflect their sense-making, well-being and importantly, potential disparities in end-of-life care. Semi-structured interviews with 25 bereaved individuals were conducted regarding their experiences with the terminal illness and death of an immediate family member. Using a framework of family bereavement narratives, a cross-case data analysis demonstrated qualitative patterns between (in)access to end-of-life care and how participants framed bereavement stories. Four themes illustrated the continuum of communication that families engaged in when making sense of end-of-life experiences, including reflections on silence, tempered frustrations, comfort with care, and support from beyond. This innovative qualitative connection between family members' bereavement stories and end-of-life care emphasizes the importance of employing a health equity lens within hospice and palliative care, especially in addressing the important aim of comprehensively supporting families even when illness ends. This study demonstrates that access to, quality of, and imagining beyond current structures for EOL may be vital factors for facilitating effective sense-making for the dying and their family systems. These findings illustrate the potential interconnections between (in)access to end-of-life care, sense-making, and communication for individuals and families experiencing terminal illness and bereavement.
Mobile-enhanced family integrated care for preterm infants: A qualitative study of Parents' views
Franck L.S., Magaña J., Bisgaard R., Lothe B., Sun Y., Morton C.H.
Q3
The Family-Integrated Care (FICare) model improves outcomes for preterm infants and parents compared with family-centered care (FCC). FICare with mobile technology (mFICare) may improve uptake and impact. Research on FICare in the United States (US) is scarce and little is known about parents' experience. We conducted qualitative interviews with nine parents, exploring their NICU experiences, participation in and perceptions of the mFICare program. A directed content analysis approach was used, and common themes were derived from the data. Overall, parents had positive NICU experiences and found mFICare helpful in meeting three common parenting priorities: actively caring for their infant, learning how to care for their infant, and learning about the clinical status of their infant. They described alignment and misalignment with mFICare components relative to their personal parenting priorities and offered suggestions for improvement. Nurses were noted to play key roles in providing or facilitating parent support and encouragement to participate in mFICare and parenting activities. The mFICare program showed potential for parental acceptance and participation in US NICUs. The mFICare model is an innovation in neonatal care that can advance the consistent delivery of NICU family-centered care planning and caregiving. Clinical Trial Registration: NCT03418870 01/02/2018.
Healthcare professionals' perspectives of barriers to cancer care delivery for American Indian, rural, and frontier populations
Varilek B.M., Mollman S.
Q3
This descriptive qualitative study sought to understand the barriers affecting cancer care delivery from the perspective of healthcare professionals (HCPs) serving American Indian (AI), rural, and frontier populations. One-on-one, semi-structured interviews with multidisciplinary HCPs (N = 18) who provide cancer care to AI, rural, and frontier populations were conducted between January and April 2022. Interviews were conducted via Zoom. Data were analyzed following thematic content analysis methodologies. Thematic content analysis revealed three major themes: (a) Access, (b) Time, and (c) Isolation. The themes represent the HCP perspectives of the needs and barriers of persons with cancer to whom they provide cancer care. Furthermore, these themes also reflect the barriers HCPs experience while providing cancer care to AI, rural and frontier populations. This study provides preliminary evidence for the need and strong multidisciplinary support for an early palliative care intervention in rural and frontier South Dakota (SD). This intervention could support the needs of persons with advanced cancer as well as the HCPs delivering cancer care in rural settings. This study is the initial step to develop the first culturally responsive, nurse-led, early palliative care intervention for AI, rural, and frontier persons with advanced cancer in SD.
Feasibility and acceptability of chaplain decision coaching on Periviable resuscitation decision quality: A pilot study
Varner-Perez S.E., Hoffman S.M., Coleman-Phox K., Bhamidipalli S., Monahan P.O., Kuppermann M., Edmonds B.T.
Q3
To pilot test and assess the feasibility and acceptability of chaplain-led decision coaching alongside the GOALS (Getting Optimal Alignment around Life Support) decision support tool to enhance decision-making in threatened periviable delivery. Pregnant people admitted for threatened periviable delivery and their ‘important other’ (IO) were enrolled. Decisional conflict, acceptability, and knowledge were measured before and after the intervention. Chaplains journaled their impressions of training and coaching encounters. Descriptive analysis and conventional content analysis were completed. Eight pregnant people and two IOs participated. Decisional conflict decreased by a mean of 6.7 (SD = 9.4) and knowledge increased by a mean of 1.4 (SD = 1.8). All rated their experience as “good” or “excellent,” and the amount of information was “just right.” Participants found it “helpful to have someone to talk to” and noted chaplains helped them reach a decision. Chaplains found the intervention a valuable use of their time and skillset. This is the first small-scale pilot study to utilize chaplains as decision coaches. Our results suggest that chaplain coaching with a decision support tool is feasible and well-accepted by parents and chaplains. Our findings recognize chaplains as an underutilized, yet practical resource in value-laden clinical decision-making.
HPV vaccine misinformation on social media: A multi-method qualitative analysis of comments across three platforms
Boatman D., Jarrett Z., Starkey A., Conn M.E., Kennedy-Rea S.
Q3
Objective The purpose of this study was to characterize similarities and differences in HPV vaccine misinformation narratives present in the comment sections of top-performing initial creator posts across three social media platforms. Methods A qualitative multi-method design was used to analyze comments collected from social media posts. A sample of 2996 comments were used for thematic analysis (identifying similar themes) and content analysis (identifying differences in comment type, opinion, and misinformation status). Results Misinformation was pervasive in comment sections. Cross-cutting misinformation themes included adverse reactions, unnecessary vaccine, conspiracy theories, and mistrust of authority. The proportion of comments related to these themes varied by platform. Initial creator posts crafted to be perceived as educational or with an anti-vaccine opinion had a higher proportion of misinformation in the comment sections. Facebook had the highest proportion of misinformation comments. Conclusion Differences in the proportion of cross-cutting themes in the comment sections across platforms suggests the need for targeted communication strategies to counter misinformation narratives and support vaccine uptake. Innovation This study is innovative due to its characterization of misinformation themes across three social media platforms using multiple qualitative methods to assess similarities and differences and focusing on conversations occurring within the comment sections.
Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson’s disease
Ayele R., Macchi Z.A., Jordan S., Jones J., Kluger B., Maley P., Hall K., Sumrall M., Lum H.D.
Q3
To describe how patients with Parkinson’s disease (PD) and care partners choose to share or withhold information from clinicians. This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients (n = 30) and care partners (n = 30) explored experiences communicating with neurology clinicians. Thematic analyses identified themes relevant to patient-care partner-clinician communication. There were four themes relevant to sharing and/or withholding information from clinicians: (1) Suppressing Concerns During Visits, (2) Care Partner Awareness of Patients’ Communication Barriers due to Cognitive Impairment, (3) Limited Sharing of Sensitive or Intimate Issues by Patients and Care Partners, and (4) Patient and Care Partner Suggestions to Overcome ‘Holding Back’. Limitations to communication between patients, care partners, and clinicians should be acknowledged and recognized in routine Parkinson’s disease care to foster accurate disclosure of unmet palliative care and other needs. Triadic communication strategies may help patients and care partners talk about unmet palliative care needs. By recognizing that cognitive impairment and sensitive topics can be barriers, clinicians can adjust or adopt targeted communication strategies for identifying and discussing care needs.
A family-centered approach to social needs awareness in the pediatric emergency department
Assaf R.R., Assaf R.D., Padlipsky P.S., Young K.D.
Q3
We aimed to understand family preferences around reporting and receiving health-related social needs (HRSN) information by assessment modality during pediatric emergency department (PED) visits. Families were randomized into paper (control), cell phone, or tablet modality groups by their child's exam room. Nurses alerted families to complete a single HRSN assessment during routine workflow. We used logistic regression and McNemar's test to assess discordance in modality preference. Forty-seven percent of families disclosed at least one HRSN across a total 611 assessments. Disclosure of HRSN was similar by modality. Twenty-three percent of those assigned tablet preferred cell phone (p < 0.001). Two-thirds of families preferred receiving digitally formatted community resources (email or text). There was no difference in preferred timing of HRSN assessment completion. Assessment modality did not appear to influence family HRSN disclosure. Families were generally satisfied with all HRSN assessment modalities but demonstrated a particular preference in using personal cell phones over tablets. Digitally formatted community referrals also pose numerous advantages over conventional paper handouts. Use of personal cell phones is a novel, streamlined method of HRSN interventions in the clinical setting, performing similar to more conventional modalities, with a preference among families when compared to tablets.
Dissemination innovation: Using found poetry to return study results to patients and partners facing cancer
Bybee S.G., Eaton J., Wong B.
Q3
Investigators should return study results to patients and families facing cancer to honor their research contributions. We created a found poem from transcripts of sexual and gender minority (SGM) couples facing cancer and returned it to study participants.
Health literacy & Chagas disease knowledge: A cross-sectional study in Southern Loja Province, Ecuador
Caridi T.L., Mariño-Polo F., Mingus A.M., Farra C.G., Memon A., Grijalva M.J., Bates B.R.
Factors associated with care partner identification and education among hospitalized persons living with dementia
Medlin A.R., Werner N.E., Still C.Z., Strayer A.L., Fields B.E.
Q3
Care partners of persons living with dementia (PLWD) often feel unprepared to care for their loved ones. Improving PLWD care partner identification and education during hospital stays can improve preparedness. This retrospective EHR study investigated PLWD characteristics that may relate to care partner identification, education, and teaching methods during hospital stays. Encounters from a Midwestern academic healthcare system were used. Patients were over 18, had a documented dementia diagnosis, were admitted to the hospital for at least 24 h, and had information documented in care partner or education data fields (N = 7982). Logistic regressions assessed patient's demographics, care partner identification and education. Chi-square tests compared education teaching methods and patient discharge location. PLWD's who were unmarried, discharged to other care facilities, or received the diagnosis "degeneration of nervous system due to alcohol" were associated with lacking care partner identification. Care partners of unmarried PLWDs or those with the diagnosis "Alzheimer's disease, unspecified" received less education. Multiple teaching methods were associated with discharge location. Multiple characteristics were related to PLWD care partner identification and education differences during hospital stays. Novel analyses highlight need for a protocol to systematically prepare dementia care partners.
Healthcare provider assessments of caregiver communication behaviors during gynecologic Cancer treatment appointments
Senger A., Venetis M.K., Greene K., Catona D., Devine K.A.
Q3
Caregivers often accompany patients to cancer-related medical appointments. Limited research exists on healthcare providers' (HCPs) evaluation of how caregiver communication influences interactions between healthcare providers and patients, particularly during gynecologic treatment visits. HCPs may perceive caregiver communication as helpful or challenging, and these triadic interactions may influence patient outcomes. Interviews with ten cancer specialist HCPs (medical assistants/technicians, nurse practitioners/registered nurses, oncologists) addressed experiences interacting with patients and caregivers. Analyses revealed two themes concerning helpful communication: caregivers managing information and managing patient emotions. Three challenging themes include caregiver communication unsettling healthcare interactions, caregiver presence limiting patient communication, and caregiver engagement challenges. HCPs evaluate caregiver communication as helpful and challenging. Findings suggest benefits of communication training for gynecologic cancer patients such as requesting privacy when interacting with HCPs, for caregivers to promote awareness of effects of their behavior, and for HCPs to help manage triadic interactions while supporting patient needs. HCP assessment of caregiver communication during gynecologic treatment visits offers unique insights regarding helpful and challenging behaviors contributing to implications for patient care and well-being. Applications may extend to other triadic interactions and cancer settings.
Generating user-driven patient personas to support preventive health care activities of rural-living unattached patients
Burton L., Rush K.L., Seaton C.L., Li E.P., Corman K., Ronquillo C.E., Davis S., Smith M.A.
Q3
This study created personas using quantitative segmentation and knowledge user enhancement to inform intervention and service design for rural patients to encourage preventive care uptake. This study comprised a cross-sectional survey of rural unattached patients and a co-design workshop for persona development. Cross-sectional survey data were analyzed for meaningful subgroups based on quartiles of preventive care completion. These quartiles informed "relevant user segments" grouped according to demographics (age, sex), length of unattachment, percentage of up-to-date preventive activities, health care visit frequency, preventive priorities, communication confidence with providers, and chronic health conditions, which were then used in the workshop to build the final personas. 207 responses informed persona user segments, and five healthcare providers and 13 patients attended the workshop. The resulting four personas, included John (not up-to-date on preventive care activities), Terrance (few up-to-date preventive care activities), George (moderately up-to-date preventive care activities), and Anne (mostly up-to-date preventive care activities). Quantitative persona development with integrated knowledge user co-design/enhancement elevated and enriched final personas that achieved robust profiles for intervention design. This project's use of a progressive methodology to build robust personas coupled with participant feedback on the co-design process offers a replicable approach for health researchers.
Measuring decision aid effectiveness for end-of-life care: A systematic review
Hughes M.C., Vernon E., Egwuonwu C., Afolabi O.
Q3
To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success. We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449). A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards. Research examining end of life care decision aid use consistently reports positive outcomes. This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.
