Search

American Indian/Alaska Native (AI/AN) communities are disproportionately affected by the opioid epidemic. AI/AN emerging adults (ages 18-25) in urban areas are at particularly high risk, with the overdose death rate among urban-dwelling AI/AN people 1.4 times higher than rural-dwelling AI/AN people. Despite these challenges, there are no evidence-based culturally tailored prevention or intervention programs to address opioid, alcohol and other drug use among urban AI/AN emerging adults. This study focused on understanding AI/AN emerging adults experiences with two culturally tailored programs addressing opioid, cannabis, and alcohol use as part of the randomized controlled trial for Traditions and Connections for Urban Native Americans (TACUNA) in order to enhance feasibility of this intervention. Using a convergent mixed methods design at 3-month follow-up, we collected satisfaction and experience ratings and written narratives (total n = 162; intervention n = 77; control n = 85) from a sample of urban-dwelling AI/AN emerging adults who participated in both programs. We analyzed data through simultaneous examination of qualitative and quantitative data. The quantitative ratings show that both programs were rated highly. The qualitative data contextualized these ratings, illustrating pathways through which specific components were perceived to cause desired or observed behavioral change in participants. Among the elements that mattered most to these participants were the convenience of the virtual format, having a comfortable and safe space to share personal stories, and learning new information about their social networks. Negative comments focused on workshop length and inconvenient scheduling. This is one of the first studies to explore participant satisfaction and experience with culturally tailored substance use programming among a historically marginalized and understudied population. It is important to consider the voices of urban-dwelling AI/AN people in program development because hidden factors, such as limited financial resources, limited time, and misalignment with cultural values may prevent existing programs from being feasible.

Emerging adulthood shapes personal, professional, and overall well-being through identity exploration. This study addresses a gap in the minority identity literature by investigating how urban AI/AN emerging adults think about their identity and discussing challenges and protective factors associated with exploring their identity holistically. This mixed-methods study created a sampling framework based on discrimination experiences, cultural identity, social network support, mental health, and problematic substance use. We recruited 20 urban AI/AN emerging adults for interviews. We sought to gain deeper insights into their experiences and discussions surrounding identity formation and exploration. We provide descriptives for demographic characteristics and conducted a thematic analysis of the qualitative data from the interviews. Four themes emerged: a) being an urban AI/AN emerging adult means recognizing that ones identity is multifaceted; b) a multifaceted identity comes with tension of living in multiple worlds; c) the trajectory of ones identity grows over time to a deeper desire to connect with Native American culture; and d) understanding ones Native American background affects ones professional trajectory. Findings underscore the importance of developing programs to support well-being and identity development through cultural connection for urban AI/AN emerging adults.

Urban American Indian/Alaska Native (AI/AN) young adults and their families are often geographically or socially distant from tribal networks and traditional social support. Young adults can be especially vulnerable to cultural and social disconnection, so understanding how AI/AN family functioning can augment resilience and protect against risk is important. This research precedes a preventive substance use intervention study and explores urban Native family functioning, emphasizing the role of young adults by analyzing data from 13 focus groups with urban AI/AN young adults (n = 32), parents (n = 25), and health providers (n = 33). We found that young adults can and want to become agents of family resilience, playing active roles in minimizing risks and strengthening family functioning in both practical and traditional ways. Also, extended family and community networks played a vital role in shaping family dynamics to support resilience. These resilience pathways suggest potential targets for intervention.

OBJECTIVES: Food insecurity contributes to racial/ethnic disparities in health. This is the first study to examine associations among food insecurity, sleep, and cardiometabolic outcomes in urban American Indian/Alaska Native (AI/AN) youth. DESIGN: Participants were 142 urban AI/AN youth (mean age = 14 years, 58% female). Food insecurity and self-reported sleep disturbance were measured using validated surveys. A multi-dimensional sleep health composite was derived using questionnaires (ie, satisfaction, alertness) and actigraphy-derived indices (ie, duration, efficiency, regularity, timing). Cardiometabolic measures included body mass index, blood pressure, glycosylated hemoglobin, waist circumference, cholesterol, and triglycerides. Covariates were sex, age, and single-parent household. RESULTS: Greater food insecurity was significantly associated with greater body mass index (b = 0.12, p = .015), higher systolic blood pressure (b = 0.93, p = .03), and greater sleep disturbance (b = 1.49, p < .001), and marginally associated with lower sleep health composite scores (b = -0.09, p = .08). There was a significant indirect path from greater food insecurity to greater waist circumference through poorer sleep health (0.11, 95% bootstrapping CI: [0.01, 0.30]). CONCLUSION: Food insecurity is an important correlate of sleep and cardiometabolic health among urban AI/AN youth and should be addressed to reduce emerging health risks during this important developmental period. Policies to reduce food insecurity and increase access to healthy foods as well as sleep interventions for these youth could help, as preliminary findings suggest that sleep health may mediate the negative impact of food insecurity on cardiometabolic risks.

Background and objectivesHealth care organizations track patient experience data, identify areas of improvement, monitor provider performance, and assist providers in improving their interactions with patients. Some practices use one-on-one provider counseling ("shadow coaching") to identify and modify provider behaviors. A recent evaluation of a large shadow coaching program found statistically significant improvements in coached providers' patient experience scores immediately after being coached. This study aimed to examine the content of the recommendations given to those providers aimed at improving provider-patient interactions, characterize these recommendations, and examine their actionability.MethodsProviders at a large, urban federally qualified health center were selected for coaching based on Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) patient experience scores (92 of 320 providers), shadowed by a trained peer coach for a half to full day and received recommendations on how to improve interactions with their patients. We coded 1082 recommendations found in the 92 coaching reports.ResultsReports contained an average of 12 recommendations. About half encouraged consistency of existing behaviors and half encouraged new behaviors. Most recommendations related to behaviors of the provider rather than support staff and targeted actions within the examination room rather than other spaces (eg, waiting room). The most common recommendations mapped to behavioral aspects of provider communication. Most recommendations targeted verbal rather than nonverbal communication behaviors. Most recommendations were actionable (ie, specific, descriptive), with recommendations that encouraged new behaviors being more actionable than those that encouraged existing actions.ConclusionsPatient experience surveys are effective at identifying where improvement is needed but are not always informative enough to instruct providers on how to modify and improve their interactions with patients. Analyzing the feedback given to coached providers as part of an effective shadow-coaching program provides details about implementation on shadow-coaching feedback. Recommendations to providers aimed at improving their interactions with patients need to not only suggest the exact behaviors defined within patient experience survey items but also include recommended behaviors indirectly associated with those measured behaviors. Attention needs to be paid to supplementing patient experience data with explicit, tangible, and descriptive (ie, actionable) recommendations associated with the targeted, measured behaviors. Research is needed to understand how recommendations are put into practice by providers and what motivates and supports them to sustain changed behaviors.

BACKGROUND: Coupling social network visualizations with Motivational Interviewing in substance use interventions has been shown to be acceptable and feasible in several pilot tests, and has been associated with changes in participants substance use and social networks. The objective of this study was to assess acceptability and feasibility of an adaptation of this behavior change approach into a culturally centered behavior change intervention for American Indian/Alaska Native (AI/AN) emerging adults living in urban areas. AI/AN populations experience high rates of health disparities and substance use. Although 70% of AI/AN people live outside of tribal lands, there are few culturally tailored health interventions for these AI/AN populations. Social networks can both increase and discourage substance use. Leveraging healthy social networks and increasing protective factors among urban AI/AN emerging adults may help increase resilience. METHODS: We conducted thirteen focus groups with 91 male and female participants (32 urban AI/AN emerging adults ages 18-25, 26 parents, and 33 providers) and one pilot test of the three workshop sessions with 15 AI/AN emerging adults. Focus group participants provided feedback on a proposed workshop-based intervention curriculum that combined group Motivational Interviewing (MI) and social network visualizations. Pilot workshop participants viewed their own social networks during group MI sessions focused on substance use and traditional practices and discussed their reactions to viewing and discussing their networks during these sessions. We used a combination of open coding of focus group and workshop session transcripts to identify themes across the group sessions and content analysis of comments entered into an online social network interview platform to assess the extent that participants had an intuitive understanding of the information conveyed through network diagrams. RESULTS: Focus group and pilot test participants reacted positively to the intervention content and approach and provided constructive feedback on components that should be changed. Themes that emerged included feasibility, acceptability, relevance, understandability, and usefulness of viewing personal network visualizations and discussing social networks during group MI workshops. Workshop participants demonstrated an intuitive understanding of network concepts (network composition and structure) when viewing their diagrams for the first time. CONCLUSIONS: Social network visualizations are a promising tool for increasing awareness of social challenges and sources of resilience for urban AI/AN emerging adults. Coupled with Motivational Interviewing in a group context, social network visualizations may enhance discussions of network influences on substance use and engagement in traditional practices. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04617938. Registered October 26, 2020.

IntroductionAlthough approximately 70% of American Indian/Alaska Native (AI/AN) people reside in urban areas, very few opioid prevention interventions exist for urban AI/AN emerging adults. The study team conducted this study to develop Traditions and Connections for Urban Native Americans (TACUNA), a new opioid prevention intervention for urban AI/AN emerging adults ages 18-25. TACUNA comprises three 2-hour virtual workshops.MethodsWe conducted thirteen focus groups in three urban communities in northern, central, and southern California (six with urban AI/AN emerging adults ages 18-25 [n = 32], four with parents [n = 26], and three with providers [n = 33]) to identify relevant intervention domains. We then incorporated the results of a rapid analysis of the focus groups to develop intervention workshops followed by a pilot test (n = 15) to further refine the intervention and assess feasibility.ResultsFour major domains emerged from focus groups: 1) historical trauma/cultural identity, 2) AI/AN traditional practices, 3) social networks, and 4) substance use. We incorporated all feedback relating to each theme to enhance content of the TACUNA intervention. Pilot test participants felt that TACUNA content was interesting, addressed their issues and concerns as urban AI/AN emerging adults, and believed that the program could help them to establish cultural and social connections to live healthier lives.ConclusionsResearch activities demonstrate how a community-informed and culturally grounded opioid prevention intervention can be developed for urban AI/AN emerging adults. Addressing issues and challenges with culturally and developmentally relevant intervention content can help to build resilience and hopefully decrease opioid use among this underserved population.

BACKGROUND: COVID-19 has profoundly affected sleep, although little research has focused on high-risk populations for poor sleep health, including American Indian/Alaska Native (AI/AN) adolescents. METHODS: This is the first longitudinal study to examine changes in sleep with surveys completed before the pandemic and during the early months of COVID-19 in a sample of urban AI/AN adolescents (N = 118; mean age = 14 years at baseline; 63% female). We use a mixed-methods approach to explore how COVID-19 affected urban AI/AN adolescents sleep, daily routines, and interactions with family and culture. Quantitative analysis examined whether pandemic-related sleep changes were significant and potential moderators of COVID-19s effect on sleep, including family and community cohesion and engagement in traditional practices. RESULTS: : Findings demonstrate changes in sleep, including increases in sleep duration, delays in bedtimes and waketimes, and increases in sleep-wake disturbances (ps

Mental health problems contribute significantly to the global burden of disease. Driven in part by family stressors and insufficient sleep, mental health disproportionately affects low SES urban adolescents. In the United States, American Indian/Alaska Native (AI/AN) youth exhibit excessively high rates of mental health problems. Family functioning is strongly associated with adolescent mental health, and sleep problems may serve as a pathway between family functioning and mental health. Using mixed methods we examine the associations among family functioning, subjective- and actigraphy-measured sleep, mental health (depressive and anxiety symptoms), and cultural identity in a sample of urban AI/AN youth. All participants (N = 142) completed surveys; a random subsample (n = 26) completed qualitative interviews to assess family and cultural dynamics related to sleep, which informed hypothesized direct and indirect effects that were tested using survey data. Narratives identified mechanisms of family cohesion (e.g., daily interactions that build perceived family togetherness and family-centered traditional activities) and the role that family cohesion plays in sleep (e.g., ensuring stability of sleep environments). Path analysis showed direct effects of improved family functioning on fewer depressive and anxiety symptoms, and indirect effects through lower self-reported sleep disturbance (but not through greater actigraphy-measured sleep duration or efficiency). Cultural identity did not moderate effects in quantitative tests. Our findings illustrate the complex associations among family functioning, sleep, and mental health in AI/AN youth. Family-based interventions to improve adolescent mental health should address modifiable intervention targets such as sleep, and address sources of both risk and resilience relevant to urban AI/AN families, including extended family and cultural practices.

BackgroundNonmedical use of prescription opioids (defined as taking opioid medications for hedonic effects or in a manner other than prescribed) and the use of heroin have emerged in recent years as major public health concerns in the United States. Of particular concern is the prevalence of opioid use among emerging adults (ages 18-25), as this is a developmental period of heightened vulnerability and critical social, neurological, and psychological development. Data from 2015 show that American Indian/Alaska Native (AI/AN) people have the highest rates of diagnosis for opioid use disorders (OUDs). One recent study found that the overdose death rate among urban-dwelling AI/AN individuals was 1.4 times higher compared to those living in rural areas. To date, there are no evidence-based prevention programs addressing opioid use among urban AI/AN emerging adults that integrate culturally-appropriate strategies with evidence-based treatment. Traditions and Connections for Urban Native Americans (TACUNA) builds on our prior work with AI/AN communities across California to develop and evaluate culturally appropriate programming to address opioid, alcohol, and cannabis use among urban AI/AN emerging adults.Methods/designIn a randomized controlled trial, 18-25 year old urban AI/AN emerging adults will receive either TACUNA (n = 185), which comprises three virtual workshops utilizing motivational interviewing, social network visualization, and integrating traditional practices and a wellness circle, or one virtual culturally sensitive opioid education workshop (n = 185). We will evaluate intervention effects on primary outcomes of frequency of opioid, alcohol, and cannabis use, as well as secondary outcomes of social network characteristics and cultural connectedness, over a 12-month period.DiscussionThis project has the potential to expand the range and effectiveness of opioid, alcohol, and cannabis services for urban AI/AN emerging adults by addressing the opioid epidemic and use of other substances at both the community and individual level. In addition, it provides important culturally grounded conceptual and practical information to advance the field of substance use interventions and enhance resiliency among this population.Trial registrationClinicalTrials.gov Identifier: NCT04617938. Registered October 26, 2020 https://clinicaltrials.gov/ct2/show/record/NCT04617938 .

ObjectivesQuality improvement (QI) requires data, indicators, and national benchmarks. Knowledge about the usefulness of Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) data are lacking. We examined quality leader and frontline staff perceptions about patient experience measurement and use of Child HCAHPS data for QI.MethodsWe surveyed children's hospital leaders and staff about their use of Child HCAHPS for QI, including measures from other studies. We compared scale and item means for leaders and staff and compared means to other studies.ResultsAlmost all leaders, but only one-third of staff, received reports with Child HCAHPS data. Leaders found the data more useful for comparisons to other hospitals than did staff. Both agreed on the validity of Child HCAHPS scores and used these data for improving pediatric care experiences. They agreed the data accurately reflect their hospital's quality of care, provide specific information for QI, and can be used to improve pediatric care experiences. They also agreed on approaches to improve Child HCAHPS scores. Among staff, QI was reported as essential to their daily work and that Child HCAHPS data were integral to QI.ConclusionsAs uptake of the Child HCAHPS survey increases, our study of one medium-sized, urban children's hospital revealed that leaders and staff believe Child HCAHPS provides actionable metrics for improvement. Our study fills a gap in research about the use of Child HCAHPS for pediatric QI. A multisite evaluation would provide further information about how the Child HCAHPS survey can improve care.

OBJECTIVES: American Indian/Alaska Native (AI/AN) youth are a high-risk group for sleep problems and associated chronic conditions. Urban AI/AN youth may face certain challenges, including specific psychosocial stressors (e.g., discrimination) and environmental factors (e.g., noise, light) that render them particularly vulnerable to poor sleep health. However, few studies have explored AI/AN adolescent sleep. To our knowledge, this is the first study to use systematic qualitative methods with AI/AN youth to explore their sleep environment and sleep behaviors. DESIGN: In-depth interviews with 26 youth. SETTING: Two urban areas in Central and Southern California. PARTICIPANTS: Urban-dwelling AI/AN youth, age 12-16 years. INTERVENTION: N/A. MEASUREMENT: N/A. RESULTS: We identified five main themes, each with subthemes: sleep patterns and desired sleep, sleep barriers inside the home, environmental factors, sleep facilitators, and cultural dimensions. Key concerns discussed were poor sleep hygiene, excessive use of electronics prior to bedtime, issues with temperature regulation, and noise both within and outside the home. Parents can be an important vehicle for messaging around sleep health and for behavior management. Participating adolescents also indicated differing levels of attachment to Native identity, suggesting that culturally-targeted sleep interventions should build in openness and flexibility to a range of identity starting points. Further, we identified cultural practices, such as sweat lodges and dreamcatchers, that could be incorporated in future sleep interventions for this population. CONCLUSION: Findings increase our understanding of urban AI/AN youths sleep environments and behaviors, thus potentially informing program development around sleep health for this vulnerable population.

ContextAchieving high-quality patient-centered care requires assessing patient and family experiences to identify opportunities for improvement. With the Child Hospital Consumer Assessment of Healthcare Providers and Systems Survey, hospitals can assess performance and make national comparisons of inpatient pediatric experiences. However, using patient and family experience data to improve care remains a challenge.ObjectiveWe reviewed the literature on best practices for monitoring performance and undertaking activities aimed at improving pediatric patient and family experiences of inpatient care.Data sourcesWe searched PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsychINFO.Study selectionWe included (1) English-language peer-reviewed articles published from January 2000 to April 2019; (2) articles based in the United States, United Kingdom, or Canada; (3) articles focused on pediatric inpatient care; (4) articles describing pediatric patient and family experiences; and (5) articles including content on activities aimed at improving patient and family experiences. Our review included 25 articles.Data extractionTwo researchers reviewed the full article and abstracted specific information: country, study aims, setting, design, methods, results, Quality Improvement (QI) initiatives performed, internal reporting description, best practices, lessons learned, barriers, facilitators and study implications for clinical practice, patient-experience data collection, and QI activities. We noted themes across samples and care settings.ResultsWe identified 10 themes of best practice. The 4 most common were (1) use evidence-based approaches, (2) maintain an internal system that communicates information and performance on patient and family experiences to staff and hospital leadership, (3) use experience survey data to initiate and/or evaluate QI interventions, and (4) identify optimal times (eg, discharge) and modes (eg, print) for obtaining patient and family feedback. These correspond to adult inpatient best practices.ConclusionsBoth pediatric and adult inpatient best practices rely on common principles of culture change (such as evidence-based clinical practice), collaborative learning, multidisciplinary teamwork, and building and/or supporting a QI infrastructure that requires time, money, collaboration, data tracking, and monitoring. QI best practices in both pediatric and adult inpatient settings commonly rely on identifying drivers of overall ratings of care, rewarding staff for successful implementation, and creating easy-to-use and easy-to-access planning and QI tools for staff.

American Indians and Alaska Natives suffer disproportionately from poverty and other inequities and are vulnerable to adverse health and socioeconomic effects of COVID-19. Using surveys and interviews (May–July 2020), we examined urban American Indian/Alaska Native adolescents’ (N=50) health and behaviors, family dynamics, community cohesion, and traditional practice participation during COVID-19. About 20% of teens reported clinically significant anxiety and depression, 25% reported food insecurity, and 40% reported poor sleep. Teens also reported high family and community cohesion, and many engaged in traditional practices during this time. Although many teens reported problems, they also emphasized resilience strategies.

ObjectiveTo describe preferences for survey instruments on health-related quality of life (HRQOL) and subjective well-being (SWB) among adults with spinal cord injury (SCI), and compare perspectives on the instruments between the United States and the United Kingdom.DesignWe conducted 20 in-depth interviews.SettingParticipants were interviewed in their homes, some in person and some via Skype.ParticipantsA convenience sample of 20 adults with SCI (10 in the US and 10 in the UK) were recruited via print and on-line advertisements.InterventionsNot applicable.Main outcome measuresInterviewees reviewed six instruments and rated how important it was for their medical providers to know answers to each survey. Two coders analyzed verbatim transcriptions independently using an inductive approach. Keyword-in-context (KWIC) analysis identified the most frequently used words by interviewees to discuss the merits of each instrument.ResultsParticipants in both samples identified the Fatigue Severity Scale (FSS) as "vital" that their medical providers know about it. This was followed by the Spinal Cord Injury Independence Measure III, and a stand-alone Eudaimonic Well-Being question. The KWIC analysis showed that the most distinctive words used to discuss FSS were "fatigue" and "pain."ConclusionsUnderstanding what HRQOL and SWB measures are valued by adults living with SCI can lead to selection of informative instruments, which could help clinicians to complement and tailor established care and rehabilitation protocols for individual needs. Participants identified fatigue as a significant issue, and the FSS as a vitally important instrument to share with medical providers.

ObjectiveTo develop and evaluate psychometrically a self-reported instrument assessing physical fatigability (PF) and mental fatigability (MF) in adults with spinal cord injury (SCI).DesignCross-sectional.SettingPeer-support groups at rehabilitation centers, online support groups.ParticipantsAdults with SCI (N=464) in the United States.InterventionsNot applicable.Main outcome measuresThe dimensional structure was assessed by confirmatory factor analysis. The relationship between item responses and fatigability was measured with item response theory (graded response model). Reliability was measured with test information functions. Differential item functioning was evaluated with Wald chi-square tests and the weighted area between the curves. Construct validity was assessed using the known groups method.ResultsAn 82-item pool was developed from prior qualitative research and consultations with rehabilitation experts. A non-probability sample (N=464) was used to evaluate the psychometric properties of the PF and MF scales. The item pool was reduced to 75 based on factor loadings and R2. Both scales are primarily unidimensional, despite moderate multidimensionality. There is good discrimination overall: 18 PF items and 26 MF items have high or very high discrimination power (slopes > 1.35). The measurement precision in the theta range -2.0 to 2.5 is the equivalent of 0.94 reliability for PF and 0.91 for MF. For both measures, F statistics P values were significant at P

PurposeTo identify which aspects of life are most important to adults with spinal cord injury (SCI) and compare perspectives in the United States and the United Kingdom.MethodsWe conducted 20 in-depth interviews with adults with SCI (ten in the US and ten in the UK). Verbatim transcriptions were independently analyzed line-by-line by two coders using an inductive approach. Codes were grouped into themes about factors that constitute and affect quality of life (QOL).ResultsFive overarching themes emerged: describing QOL in the context of SCI; functional adjustment; medical care; financial resources; and socio-political issues. Twenty subthemes emerged on factors that affect QOL. Participants in both samples identified medical care as a key influence on QOL. The US group talked about a predominantly negative influence (e.g., fragmented primary and specialist care, insurance constraints, bureaucracy), whereas UK interviewees mentioned a predominantly positive influence (e.g., universal provision, including free and continuous care, free wheelchairs and home care, and length of rehabilitation commensurate with level of injury). Functional adjustment, such as physical and mental adjustment post-discharge and aging with SCI, was another important contributor to QOL, and varied by country. Most US interviewees reported poor knowledge about self-care post-discharge and poor quality of home adaptations compared to the UK group.ConclusionsFor adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the two countries in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics.

ObjectiveExamine practice leaders' perceptions and experiences of how patient-centered medical home (PCMH) transformation improves patient experience.SubjectsThirty-six interviews with lead physicians (n = 13), site clinic administrators (n = 13), and nurse supervisors (n = 10).MethodsSemi-structured interviews at 14 primary care practices within a large urban Federally Qualified Health Center (FQHC) delivery system to identify critical patient experience domains and mechanisms of change. Identified patient experience domains were compared with Consumer Assessment of Healthcare Providers and Systems (CAHPS) items.ResultsWe identified 28 patient experience domains improved by PCMH transformation, of which 22 are measured by CAHPS, and identified 24 mechanisms of change commonly reported by practice leaders during PCMH transformation.ConclusionsPCMH practice transformation can improve patient experience. Most patient experience domains reported as improved during PCMH efforts are measured by CAHPS items. Practices would benefit from collecting specific information on staff behaviors related to teamwork, team-based communication, scheduling, emergency and inpatient follow-up, and referrals. All 3 types of practice leaders reported 4 main mechanisms of PCMH change that improved patient experience. Our findings provide guidance for practice leaders on which strategies of PCMH practice transformation lead to specific improvements in patient experience measures. Further research is needed on the relationship between PCMH changes and changes in CAHPS patient experience scores.

PurposeMost health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers.MethodsWe conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care.ResultsParticipants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia.ConclusionsPatient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

Using data from an intercept survey of 428 adults who received free surplus produce at five distribution sites and qualitative data from 15 interviews with site personnel, we examined facilitators (e.g. community partnerships, coalition support) and challenges (e.g. limited refrigerated storage, lack of transportation infrastructure) to operating a food recovery and distribution program in Los Angeles County. Overall, this food system intervention appeared to fill an unmet need for recipients, nearly 80% of whom were food insecure and 60% visited a site several months/year or monthly. For many living in this county's underserved communities, this effort was instrumental in increasing access to healthy food before and during the COVID-19 pandemic. To sustain/expand this program's reach, local governments and food assistance programs should provide greater coordination and oversight, and invest more resources into this food recovery and distribution infrastructure. [ABSTRACT FROM AUTHOR]

Objective: This study examined the association between neighborhood social environment and sleep among urban American Indian and Alaska Native (AI/AN) adolescents as well as the moderating role of cultural factors in this association. Method: The analytic sample included 133 urban AI/AN adolescents (age 12-16, 57.1% female, Mage = 14.03, SDage = 1.35). Perceived neighborhood social environment included safety and cohesion. Cultural factors included AI/AN cultural identification and historical loss. Sleep duration, efficiency, and wake after sleep onset (WASO) were measured via actigraphy. Sleep disturbance was measured via a questionnaire. Results: Greater neighborhood safety was significantly associated with lower sleep disturbance (b=-2.17, SE= 0.8, p=.008), higher sleep efficiency (b =1.75, SE =0.64, p =.006), and lower WASO (b=-8.60, SE=3.34, p= .01). Neighborhood cohesion was not associated with any sleep outcomes. Cultural factors moderated the association between neighborhood social environment and sleep outcomes (p,.05). Specifically, both neighborhood safety and cohesion were associated with lower sleep disturbance, only among individuals reporting higher levels of AI/AN cultural identification. Further, neighborhood safety was associated with greater sleep efficiency and lower WASO (i.e., better sleep) only among adolescents with higher contemplation of historical loss. Conclusions: Findings highlight the importance of considering cultural factors in addressing sleep and health disparities. AI/AN cultural identification and a sense of historical loss may be important targets for identifying adolescents who might benefit the most from policies and interventions focused on improving the social environment in order to improve sleep and other health outcomes. [ABSTRACT FROM AUTHOR]