Underserved Families Research Articles

Patient loneliness in an urban, underserved family medicine residency clinic: prevalence and relationship to health care utilization.

Mounting evidence suggests that loneliness increases the risk of poor health outcomes, including cardiovascular disease and premature mortality.Objective: This study examined the prevalence of loneliness in an urban, underserved family medicine residency clinic and the association of loneliness with health care utilization. Adult patients (N = 330; M age = 42.1 years, SD = 14.9; 63% female; 58% African American) completed the 3-item UCLA Loneliness screener at their primary care visits between November 2018 and January 2019. A retrospective case-control study design was used to compare health care utilization [hospitalizations, emergency department (ED) visits, primary care visits, no-shows and referrals] in the prior 2 years between patients who identified as lonely versus those who did not. Covariates included demographics and clinical characteristics. Nearly half (44%) of patients exceeded the cut-off for loneliness. Patients who were lonely were more likely to identify as African American, have depression and have a substance use disorder. Patients in the lonely group had significantly longer hospital stays and more primary care visits, no-shows and referrals than patients in the non-lonely group; there were no differences in number of hospitalizations or ED visits. The prevalence of loneliness in an urban, underserved primary care clinic was much higher than prior prevalence estimates in primary care. Patients who are lonely may use more health care resources than patients who are not lonely. Primary care may be an ideal setting in which to identify patients who are lonely to further understand the impact of loneliness on health care outcomes.

Abstract B038: A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer

Abstract Disparities in quality of life in Latino youth in cancer treatment and their families have been well documented. Parents of children undergoing cancer treatment experience increased stress that impacts physical and emotional health and subsequently, quality of care received by children. Access to supportive interventions may also be limited for Latino caregivers, due to myriad factors such as lack of insurance, income, language barriers, and documentation status. Accordingly, we aimed to address this gap in the literature by engaging in an equitable collaboration with community partners to develop an intervention to improve quality of life in Latino caregivers of children with cancer. Specifically, we utilized a community-based participatory research (CBPR) model to create a community advisory board with which to partner in this endeavor. Spanish-speaking parents of youth who were in or had previously undergone cancer treatment were recruited. We held regular meetings over the course of one year to identify themes of recurring experiences and barriers to optimal quality of life during children’s cancer treatment. Meetings were continuously evaluated to ensure adherence to the following CBPR principles: 1. collaborative & equitable, 2. mutually beneficial, 3. co-learning process and were transcribed and coded for thematic elements. Significant themes unique to this population included: increased parental stress given cancer care generally fell to one parent, minimal access to self-care strategies, lack of culturally competent healthcare, lack of access to appropriate health-related information, and language barriers affecting quality of communication and information transfer. These themes were used to identify components of a caregiver intervention that includes modules addressing interactions with healthcare providers, self-care with a focus on stress management, and health literacy. Next steps in this program of research are to vet the intervention components with a larger community advisory board to ensure cultural relevance and appropriateness and develop and implement the intervention. This program of research has the potential to minimize disparities in psychosocial outcomes in underserved Latino families of children with cancer. Citation Format: Michelle A Fortier, Ramon Garcia, Lessley Torres, Sonia Zavala, Beverly Mendoza, Elisa Ornelas, Haydee Cortes, Zeev N Kain, Belinda Campos. A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B038.

Adapting PCIT to address mental health care disparities among underserved families impacted by pediatric illness: A case series of bedside PCIT.

Adapting PCIT to address mental health care disparities among underserved families impacted by pediatric illness: A case series of bedside PCIT.

Family Perspectives toward Using Telehealth in Early Intervention

Using telehealth in early intervention has the potential to increase family and child outcomes as well as to increase access to family-centered services. Yet, little is known about families’ perspectives, including concerns, prior to using telehealth in early intervention. The purpose of this study was to explore families’ perceptions and attitudes toward using telehealth in early intervention. Nine focus groups were conducted with 37 families of children with disabilities. Overall, participants preferred in-person visits (versus telehealth) for early intervention services. However, participants recognized some benefits of telehealth in facilitating communication with early intervention professionals and reaching underserved families. In addition to benefits, participants identified barriers to telehealth including limited access to: technology, the internet and materials. Policymakers and professionals should consider the perspectives, priorities and concerns of families before implementing telehealth in early intervention.

Parental Concerns of Underserved Young Children at Risk for Autism.

Early identification of children at risk for autism spectrum disorder (ASD) is critical to promote optimal outcomes. However disparities in early recognition of ASD based on race, ethnicity, income, and English proficiency persist. Little is known regarding how parents from these groups describe concerns. The study aim was to understand how parents of children from underserved backgrounds at developmental risk describe concerns about child development and behavior. To address this gap, developmental concerns of 204 parents of children at-risk for ASD from underserved communities were analyzed. In this sample, the number and type of parental concerns differed based on parent primary language but not the presence of ASD or ethnicity. Parents whose primary language was Spanish were less likely to express concerns about their child's development or to express ASD-specific concerns. These findings have implications for how clinicians elicit and interpret developmental concerns from underserved families.

Health Literacy and Health Communication Training for Underserved Patients and Informal Family Caregivers.

Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers. We examine three iterations of training feedback for implementation in future training.

Supplemental Material for Adapting PCIT to Address Mental Health Care Disparities Among Underserved Families Impacted by Pediatric Illness: A Case Series of Bedside PCIT

Supplemental Material for Adapting PCIT to Address Mental Health Care Disparities Among Underserved Families Impacted by Pediatric Illness: A Case Series of Bedside PCIT

Parent–teen communication predicts treatment benefit for depressed and suicidal adolescents.

Although there are currently several efficacious treatments for depressed and suicidal adolescents, less is known about predictors and moderators of adolescents' treatment response. A growing literature has identified family functioning as a prognostic indicator of adolescents' likelihood of benefiting from treatment. The current study tested both observational and perceived measures of family functioning as indicators of adolescents' response to 2 treatment conditions. The sample consisted of 129 depressed and suicidal adolescents (Mage = 14.96, 82.9% female, 56% Black/African American) who were randomized to attachment-based family therapy or family-enhanced nondirective supportive therapy (Diamond et al., 2019). Baseline assessments of family functioning included ratings of parent-adolescent communication coded with the Goal-Corrected Partnership in Adolescence Coding System (Lyons-Ruth, Hennighausen, & Holmes, 2005) and adolescent and parent reports of Family Conflict and Cohesion from the Self-Report of Family Functioning (Bloom, 1985). Adolescents who engaged in more uncooperative communication with their parents during a 10-min conflict discussion showed greater reductions in depressive symptoms in both treatments. Adolescents from traditionally underserved (non-White or lower income) families showed greater reductions in suicidal ideation in both treatments. Attachment-based family therapy and family-enhanced nondirective supportive therapy were most effective for adolescents from traditionally underserved families and adolescents who engaged in less cooperative communication with their caregivers. Observational ratings of parent-adolescent communication were better prognostic indicators of treatment response than were self-reported indicators of global family functioning. Implications for generalizing these results to other treatments for depressed and suicidal adolescents are discussed. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina

In North Carolina (NC), there are many resources designed to support the needs of children with autism and their families, and yet a troubling gap in underserved families' access to those services. To address this gap, the Meeting FACES workshop was designed to: (a) provide an opportunity for parents, educators, and service providers to build partnerships, (b) provide parents with opportunities to learn about available autism services in their communities, and (c) assess the needs of underrepresented families of children with autism in NC. Findings indicate that minority families of children with autism in central NC require more supports to access and navigate services. Additionally, participants were very satisfied withMeeting FACES and were interested in participating in future FACES programming.

The Project ENABLE Cornerstone Randomized Pilot Trial: Protocol for Lay Navigator-Led Early Palliative Care for African-American and Rural Advanced Cancer Family Caregivers

BackgroundPatients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study DesignSingle-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. ConclusionOnce acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.

Values-Based Behavioral Activation for Chronic Pain in Primary Care: A Pilot Study

Chronic pain is prevalent and can be complex to manage in primary care. Encouraging patients with chronic pain to engage in valued activities has been associated with reduced disability and distress. This single-arm, mixed methods pilot study examined whether adding a values-based behavioral activation intervention to a chronic pain protocol is feasible and acceptable in an urban, underserved family medicine residency clinic. Patients (N = 30) living with chronic pain completed a values assessment and co-created a plan with a psychologist to engage in values-based activities. Patients completed self-report measures of psychological health and functioning pre- and post-intervention and a qualitative interview at the follow-up visit. The intervention was considered feasible and acceptable. Patients reported high levels of satisfaction and enjoyment of the intervention and significantly less pain interference at follow-up compared to baseline. Values-based behavioral activation for chronic pain may be implemented as part of behavioral health practice in primary care.

Service-Related Barriers and Facilitators in an Early Childhood System of Care: Comparing the Perspectives of Parents and Providers.

Systems of care (SOCs) have the potential to enhance underserved families' access to integrated health and support services. Most scholarship on SOCs has involved school-aged children and adolescents. Thus, research is needed to better understand barriers to, and facilitators of, families' access to services during early childhood. The present study included a community-based participatory approach in understanding services for families of children under age six years with severe emotional and behavioral problems. We analyzed data from two focus groups with caregivers (n = 7) and three focus groups with service providers (n = 22). Our thematic analysis of participants' responses revealed five primary barriers to family service access, including challenges associated with transition planning. In comparison, participants described four primary facilitators of family service access, including providers' adoption of "whole-family" service delivery approaches. Findings indicated areas of convergence and divergence in caregivers' and providers' responses. We discuss limitations and potential implications.

Secondary benefits of the families improving together (FIT) for weight loss trial on cognitive and social factors in African American adolescents

BackgroundAlthough weight loss is an important primary outcome in obesity interventions, family-based interventions may have cascading ripple effects that extend to other aspects of health and well-being. Identifying these secondary benefits may be useful for understanding how to best engage underserved African American families in weight loss. The present research examines whether African American adolescents and parents perceive secondary benefits from participating in a family-based weight-loss intervention, including secondary health, social, or cognitive benefits.MethodsQualitative data were obtained from families participating in the group-based intervention of the Families Improving Together (FIT) for Weight Loss trial. During the final week of the face-to-face motivational and family-based intervention program, families completed a guided open-ended group discussion about changes they experienced from participating (14 groups, N = 41 adolescents and 41 parents). Sessions were audiotaped, transcribed, and coded by independent pairs of raters using both inductive and deductive approaches. Guided by the multi-theoretical framework for the FIT trial, some themes were determined prior to coding using a deductive approach, including: (a) health outcomes (e.g., monitoring strategies for diet and physical activity), (b) social outcomes (e.g., involvement in family support, group support, autonomy support, family bonding, positive communication) and (c) cognitive outcomes (e.g., expression of self-confidence through self-efficacy, self-regulation, establishment of long-term goals). In addition to these pre-determined themes, the coding process included an inductive assessment, allowing for unexpected themes to surface as well around positive self-talk, relapse prevention, and monitoring strategies for different types of weight-related behaviors.ResultsAcross both adolescents and parents, the cognitive outcomes were the most frequently discussed outcomes, including self-regulation, monitoring strategies for diet, establishing long-term goals, and ultimate relapse prevention. Parents made a greater number of comments about the social outcomes, including family support, group support, self-efficacy, and family connectedness, whereas adolescents made a greater number of comments about positive family communication.ConclusionsThe results provide preliminary support for the positive secondary effects of weight loss programs on improving both cognitive and social well-being in underserved African American adolescents.Trial registrationClinicalTrials.gov # NCT01796067. https://clinicaltrials.gov/ct2/show/NCT01796067?term=NCT01796067&rank=1The trial was registered on February 21, 2013 and the first participant was enrolled July 12, 2013.

Enhancing access to genetic cancer risk assessment (GCRA) in Monterrey, Mexico: The beginning of a prevention program.

e13150 Background: In limited-resource countries like Mexico, GCRA is not routinely provided due to elevated costs, lack of public coverage for testing and prophylactic surgeries, and limited GCRA expertise or awareness among providers and patients. Thus, GCRA services in Mexico are 20 years behind higher income countries, resulting in suboptimal care and limited opportunity for prevention. The Breast Cancer Center TecSalud established formal GCRA services for underserved patients by recruiting a cancer geneticist who provides care at no added expense to patients, building academic collaborations for training and research with City of Hope, and enabling free genetic testing through the Clinical Cancer Genomics Community Research Network, supported in part by the Breast Cancer Research Foundation. Aim: To report the uptake of the GCRA program by patients and relatives at TecSalud from January 2016 - December 2018. Methods: Eligibility includes Mexican women who meet hereditary breast cancer testing criteria and family members of mutation carriers. Risk reduction procedures are covered by Seguro Popular and/or the NGO Fundación Santos y de la Garza Evia. Results: GCRA was offered to 255 patients and 74 at risk relatives, with an increasing reach (proportion of those eligible who access the program). A significant growth of cascade testing and access to risk reduction surgery over time are noted. Conclusions: A growing number of referrals and GCRA visits shows improving reach, possibly due to engagement of the multidisciplinary team and increased patient awareness. The expansion of cascade testing and performance of risk-appropriate surgeries reflects a maturing prevention program. Key determinants of our progress are collaborations that provided us with crucial mentorship, access to genetic assays, as well as the increasing involvement of local leaders, administrators and benefactors for the establishment of vital clinical and research capacity. Multilevel efforts should continue to enhance the delivery of standard of medical care for the most vulnerable and underserved high-risk patients and families. [Table: see text]

Comparative Effectiveness Trial of an Obesity Prevention Intervention in EFNEP and SNAP-ED: Primary Outcomes.

There is a need to disseminate evidence-based childhood obesity prevention interventions on a broader scale to reduce obesity-related disparities among underserved children. The purpose of this study was to test the comparative effectiveness of an evidence-based obesity prevention intervention, Hip-Hop to Health (HH), delivered through Expanded Food and Nutrition Education Program (EFNEP) and the Supplemental Nutrition Assistance Program-Education (SNAP-Ed) versus the standard curriculum delivered by the programs (Standard Nutrition Education (NE)). A nonequivalent control group design was delivered to compare the effectiveness of HH to NE on weight gain prevention and health behavior outcomes at EFNEP and SNAP-Ed sites. One hundred and fifty-three caregiver–child dyads (n = 103 in the HH group; n = 50 in the NE group) participated in the study. HH is an evidence-based dietary and physical activity intervention for low-income preschool children. The NE curriculum provided lessons for children that are consistent with the Dietary Guidelines for Americans 2010. Data were collected on demographics, anthropometrics, and behavioral variables for parent–child dyads at baseline and postintervention. Mixed model methods with random effects for site and participant were utilized. No differences in child or caregiver diet, physical activity, or screen time by group were found. No between-group differences in child BMI z-score were found; however, caregivers in the HH group lost significantly more weight than those in the NE group. Results from this trial can inform future dissemination efforts of evidenced-based programs for underserved families.

The Pathways for African American Success: Does Delivery Platform Matter in the Prevention of HIV Risk Vulnerability Among Youth?

PurposeTechnology provides new possibilities for disseminating effective prevention programming to underserved families, such as those residing in rural communities. The present study is an evaluation of a technology-delivered HIV risk prevention program designed for rural African-American families, Pathways for African American Success (PAAS), to determine its promise for increasing access to evidence-based youth risk prevention programs among those in the greatest need. MethodsFour hundred and twelve parent/youth dyads were randomly assigned to one of three conditions: (1) in-person facilitator-led PAAS small group, (2) self-directed PAAS technology, or (3) a literature control with home-mailed educational materials. ResultsCompared with families in the literature control condition, families assigned to the PAAS technology or small group conditions demonstrated significantly stronger intervention induced parent–child protective processes (e.g., enhanced discussion quality, clearly articulated norms, and parental expectations about risk engagement) and lower youth intentions to engage in risky behaviors 6 months postintervention. Although some important nuances were noted, this study suggests that the PAAS technology–delivered modality is just as efficacious as the in-person facilitator-led, small group modality in dissuading HIV-related risk behaviors among rural African-American youths. ConclusionsImplications for having a menu of service delivery models that address the diverse needs and contexts of families are discussed, including the promise of technology as an alternative modality for reaching populations often characterized as difficult to reach and to engage in family-based preventive interventions.

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.

Early Childhood Obesity Among Underserved Families: A Multilevel Community-Academic Partnership.

A community-academic partnership, based on a social-ecological framework, addressed pediatric obesity by implementing a multilevel intervention for underserved families in Los Angeles, California. Individual- and interpersonal-level outcomes included significant positive changes in preschoolers' identification of unhealthy foods and in parents' shopping, cooking, and parenting behaviors. Organizational-, community-, and policy-level outcomes included healthy options at restaurants and a coalition supporting a parental initiative to create healthy checkout aisles in supermarkets. The multilevel intervention demonstrated favorable results using descriptive statistics and the paired-samples t-test.

A Program Model Describing a Community-Based Mother and Infant Health Program.

The objective of this study was to formulate a MOMS Orange County program model to describe the components and function of a successful community-based maternal and infant health program. A logic framework was used to guide the development of the MOMS program model. Twenty-five MOMS staff members were interviewed; MOMS documents and existing research literature were reviewed. Content analyses were used to identify themes of interviews and the review guide was used to summarize the documents. The key components of the MOMS program were identified to formulate a narrative and graphic model. The main elements of this model included: target population (underserved women who have low socioeconomic status and have limited access to healthcare in Orange County); theoretical assumptions (social determinants of health, human ecology, self-efficacy); goals (empower women, enhance health of infants, strengthen families); inputs (funded by public and private sources; 50 staff members); activities (care-coordination home visitation community-center group health education); outputs (the number of home visitations, referrals to medical and/or psychological services, and group health education classes); and outcomes (short-term: healthy pregnancy, birth outcomes, family support; medium-term: postpartum well-being, infant development, family functioning; long-term: women's well-being, children's development, family relationships. Future research should test how this model functions to empirically improve maternal, newborn, child, and family health. The MOMS program provides a new approach to community-based maternal and infant health interventions focusing on health promotion and disease prevention for underserved families in socioeconomically disadvantaged communities.

Perspectives on shared reading among a sample of Latino parents.

Paediatric professionals promote shared reading to facilitate school readiness, yet relatively few studies examine how parents from underserved communities consider this issue in their daily lives. We sought to understand shared reading within the broader context of parenting among Latino parents. We conducted in-depth interviews, purposively sampling Spanish-speaking, Latina mothers of children aged ≤3years from an urban Federally Qualified Health Center. Interviews were recorded, transcribed, and analysed iteratively. We allowed themes to emerge from data rather than impose an a priori framework. We sought disconfirming evidence within interviews and collected additional data to ensure no new themes were identified (saturation). We achieved saturation after 12 interviews. The median child age was 1.4years. We identified four major themes: (a) All participants reported engaging in literacy promoting activities such as conversations, storytelling, play, and singing even if they did not read to their children daily. (b) Parents' attitudes regarding early learning and development influenced the extent to which parents engaged in shared reading with their child. (c) Participants described feelings that they ought to read daily with their children but were not and cited a variety of barriers. (d) Parents who engaged in frequent shared reading described it as a joyful and relaxed experience; parents who did not engage in shared reading described reading as instructing children or engaging in drills (e.g., teaching letters). Urban, Latina mothers who did not read regularly with their children nonetheless recognized its importance suggesting that existing programmes have raised awareness even among underserved families. Refinement of messaging may be needed to move past raising awareness to facilitating shared reading for some parents.