scholarly journals Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults

Autism ◽  
2020 ◽  
pp. 136236132096717
Author(s):  
Christina Nicolaidis ◽  
Kelly Y Zhen ◽  
Junghee Lee ◽  
Dora M Raymaker ◽  
Steven K Kapp ◽  
...  
Keyword(s):  
Self Efficacy ◽  
Community Based Participatory Research ◽  
Internal Consistency Reliability ◽  
Healthcare Outcomes ◽  
Community Based ◽  
Healthcare Needs ◽  
Unmet Healthcare Needs ◽  
Patient Provider Communication ◽  
Autistic Adults ◽  
Healthcare Interventions

There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions. Lay Abstract Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.

scholarly journals Patient and caregiver experiences at a specialized primary care center for autistic adults

2020 ◽  
Vol 9 (16) ◽  
pp. 1131-1140
Author(s):  
Brittany N Hand ◽  
Daniel L Coury ◽  
Amy R Darragh ◽  
Susan White ◽  
Susan Moffatt-Bruce ◽  
...  
Keyword(s):  
Medical Home ◽  
Healthcare Delivery ◽  
Adult Patients ◽  
Published Data ◽  
Patient Centered Medical Home ◽  
Primary Care Center ◽  
Patient Centered ◽  
Healthcare Needs ◽  
Unmet Healthcare Needs ◽  
Autistic Adults

Background: Little is known about the extent to which patient-centered medical homes meet the needs of autistic adults. Materials & methods: We conducted a cross-sectional survey of autistic adult patients (n = 47) and caregivers of autistic adult patients (n = 66) receiving care through one patient-centered medical home specifically designed to meet the needs of this population. We performed post hoc comparisons of our results to previously published data from a national sample of autistic adults. Results: Participants reported high levels of satisfaction with care, frequent preventive healthcare use and few unmet healthcare needs. Autistic adults in our sample reported significantly higher satisfaction and fewer unmet healthcare needs. Conclusion: A patient-centered medical home tailored to the needs of autistic adults is a promising approach to healthcare delivery for meeting this population’s needs.

scholarly journals Digital Divide Magnified for Older Veterans Living Off the Grid

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 119-120
Author(s):  
Kathryn Nearing ◽  
Camilla Pimentel ◽  
Eileen Dryden ◽  
Laura Kernan ◽  
Lauren Moo
Keyword(s):  
Digital Divide ◽  
National Sample ◽  
Social Determinant ◽  
Community Based ◽  
Moral Imperative ◽  
Healthcare Needs ◽  
Digital Divides ◽  
Unmet Healthcare Needs ◽  
Past Experiences ◽  
Social Determinant Of Health

Abstract Compared to urban Veterans, rural Veterans are more likely to be older (55-74), not employed, have less education, more service-related disabilities and unmet healthcare needs. Interviews with a national sample of community-based outpatient clinic providers described highly-rural Veterans who are “off the grid.” These Veterans, by choice and/or circumstance, do not have access to reliable internet, associated devices or knowledge/skills. Providers described the difficulties of connecting with these Veterans even by phone. The healthcare shift to virtual telehealth modalities in response to COVID-19 highlights the digital divide as a social determinant of health. For “off-the-grid” Veterans, past experiences and present-day circumstances converge to perpetuate and exacerbate inequalities in accessing healthcare. Their situation underscores that telehealth is not a panacea for increasing access to care and confronts us with the moral imperative to reach those with whom it may be most difficult to connect to span social, geographic and digital divides.

Development and Evaluation of a Blood Glucose Monitoring YouTube Video for Marshallese Patients Using a Community-Based Participatory Research Approach

2019 ◽  
Vol 20 (4) ◽  
pp. 205-215
Author(s):  
Pearl A. McElfish ◽  
Brett Rowland ◽  
Sheldon Riklon ◽  
Nia Aitaoto ◽  
Ka'imi A. Sinclair ◽  
...  
Keyword(s):  
Blood Glucose ◽  
Participatory Research ◽  
Self Efficacy ◽  
Glucose Monitoring ◽  
Community Based Participatory Research ◽  
Research Approach ◽  
Culturally Appropriate ◽  
Community Based ◽  
Cultural Appropriateness ◽  
Participatory Research Approach

The purpose of this study was to (a) describe the development of a culturally appropriate glucose monitoring video using a community-based participatory research approach and (b) assess the cultural appropriateness and effectiveness of the video. The topic of the video—using a glucometer and the importance of performing blood glucose checks—was chosen by Marshallese community stakeholders. The video was produced in Marshallese with English subtitles and disseminated through YouTube. Participants were recruited from August 16, 2016 to September 12, 2016 in a diabetes clinic that serves Marshallese patients in northwest Arkansas. Fifty participants completed a survey at pre- and postintervention, with questions capturing demographic information and questions on glucose monitoring self-efficacy using an adapted version of the Stanford Patient Education Research Center's Diabetes Self-Efficacy Scale. Twenty of those participants who completed the survey also completed semistructured interviews that assessed cultural appropriateness and effectiveness of the video. Participants reported significant increases in self-efficacy related to glucometer use and the importance of performing blood glucose checks ( p < .001) and a 1.45% reduction in A1C between preintervention and 12 weeks postintervention ( p = .006). Qualitative results indicated the video was both culturally appropriate and effective. The findings of this study were consistent with evidence in the literature, which shows health education videos can be effective at improving health behaviors. Using a community-based participatory research approach to prioritize video topics, and including members of the community in the creation and dissemination of the videos, could aid in ensuring the videos are effective and culturally appropriate.

scholarly journals A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Tali Filler ◽  
Pardeep Kaur Benipal ◽  
Nazi Torabi ◽  
Ripudaman Singh Minhas
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Scale Up ◽  
Community Based Participatory Research ◽  
Final Analysis ◽  
Well Being ◽  
Research Process ◽  
Healthcare Research ◽  
Community Based ◽  
Healthcare Needs

Abstract Background Refugees often face psychosocial complexity and multi-dimensional healthcare needs. Community-Based Participatory Research (CBPR) methods have been previously employed in designing health programs for refugee communities and in building strong research partnerships in refugee communities. However, the extent to which these communities are involved remains unknown. Objective To review the evidence on the involvement of refugees in CBPR processes to inform healthcare research. Methods A scoping review was performed, using Arksey & O’Malley’s methodological framework. A literature search in Medline, PubMed, PsycINFO, CINAHL, Embase, Global Health, Scopus, and Policy File Index for articles published until August 2020 was conducted. Articles were included if they focused on CBPR, had refugee involvement, and discussed healthcare/health policy. Results 4125 articles were identified in the database searches. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-reviewer kappa-statistic of 0.85. 14 studies were included in the final analysis. The purpose of CBPR use for 6 (42.9%) of the articles was developing and implementing mental health/social support interventions, 5 (35.7%) focused on sexual and reproductive health interventions, 1 (7.1%) focused on domestic violence interventions, 1 (7.1%) focused on cardiovascular disease prevention and 1 (7.1%) focused on parenting interventions. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, all articles included refugees in the design of the research study, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination and 1 article (7.1%) reported having refugees contribute to scale up initiatives. Conclusions CBPR has been identified as a methodology with the potential to make substantial contributions to improving health and well-being in traditionally disenfranchised populations. As the needs of refugee communities are so diverse, efforts should be made to include refugees as partners in all stages of the research process.

scholarly journals Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

Autism ◽  
2020 ◽  
pp. 136236132094973
Author(s):  
Christina Nicolaidis ◽  
Gavin Schnider ◽  
Junghee Lee ◽  
Dora M Raymaker ◽  
Steven K Kapp ◽  
...  
Keyword(s):  
Primary Care ◽  
Healthcare Provider ◽  
Self Efficacy ◽  
Healthcare Providers ◽  
Psychometric Testing ◽  
Community Based Participatory Research ◽  
Training Needs ◽  
Medical Issues ◽  
Adult Autism ◽  
Autistic Adults

Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations. Lay abstract The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.

scholarly journals Feasibility of an experiential community garden and nutrition programme for youth living in public housing

2015 ◽  
Vol 18 (15) ◽  
pp. 2759-2769 ◽  
Author(s):  
Karissa Grier ◽  
Jennie L Hill ◽  
Felicia Reese ◽  
Constance Covington ◽  
Franchennette Bennette ◽  
...  
Keyword(s):  
Public Housing ◽  
Participatory Research ◽  
Self Efficacy ◽  
Community Based Participatory Research ◽  
Community Garden ◽  
Fruit And Vegetable ◽  
Community Based ◽  
Limited Effectiveness ◽  
Field Notes ◽  
Nutrition Programme

AbstractObjectiveFew published community garden studies have focused on low socio-economic youth living in public housing or used a community-based participatory research approach in conjunction with youth-focused community garden programmes. The objective of the present study was to evaluate the feasibility (i.e. demand, acceptability, implementation and limited-effectiveness testing) of a 10-week experiential theory-based gardening and nutrition education programme targeting youth living in public housing.DesignIn this mixed-methods feasibility study, demand and acceptability were measured using a combination of pre- and post-programme surveys and interviews. Implementation was measured via field notes and attendance. Limited-effectiveness was measured quantitatively using a pre–post design and repeated-measures ANOVA tests.SettingTwo public housing sites in the Dan River Region of south central Virginia, USA.SubjectsForty-three youth (primarily African American), twenty-five parents and two site leaders.ResultsThe positive demand and acceptability findings indicate the high potential of the programme to be used and be suitable for the youth, parents and site leaders. Field notes revealed numerous implementation facilitators and barriers. Youth weekly attendance averaged 4·6 of 10 sessions. Significant improvements (P<0·05) were found for some (e.g. fruit and vegetable asking self-efficacy, overall gardening knowledge, knowledge of MyPlate recommendations), but not all limited-effectiveness measures (e.g. willingness to try fruits and vegetables, fruit and vegetable eating self-efficacy).ConclusionsThis community-based participatory research study demonstrates numerous factors that supported and threatened the feasibility of a gardening and nutrition programme targeting youth in public housing. Lessons learned are being used to adapt and strengthen the programme for future efforts targeting fruit and vegetable behaviours.

Stakeholder Perspectives on the Stigma of Suicide Attempt Survivors

Crisis ◽  
2017 ◽  
Vol 38 (2) ◽  
pp. 73-81 ◽  
Author(s):  
Lindsay L. Sheehan ◽  
Patrick W. Corrigan ◽  
Maya A. Al-Khouja ◽  
Keyword(s):  
Suicide Attempt ◽  
Health Professionals ◽  
Attempted Suicide ◽  
Community Based Participatory Research ◽  
Public Stigma ◽  
Suicide Method ◽  
Community Based ◽  
Stakeholder Perspectives ◽  
Personal Experiences ◽  
Prejudice And Discrimination

Abstract. Background: Past scholarly efforts to describe and measure the stigma surrounding suicide have largely viewed suicide stigma from the perspective of the general public. Aims: In the spirit of community-based participatory research (CBPR), the current study brought together a diverse stakeholder team to qualitatively investigate the suicide stigma as experienced by those most intimately affected by suicide. Method: Seven focus groups (n = 62) were conducted with suicide attempt survivors, family members of those who died by suicide, and suicide loss therapists. Results: Themes were derived for stereotypes (n = 30), prejudice (n = 3), and discrimination (n = 4). People who attempted suicide were seen as attention-seeking, selfish, incompetent, emotionally weak, and immoral. Participants described personal experiences of prejudice and discrimination, including those with health professionals. Conclusion: Participants experienced public stigma, self-stigma, and label avoidance. Analyses reveal that the stigma of suicide shares similarities with stereotypes of mental illness, but also includes some important differences. Attempt survivors may be subject to double stigma, which impedes recovery and access to care.

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