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OBJECTIVE: To explore clinicians' perspectives about the impact of group well-child care (GWCC) on equitable health care delivery. METHODS: In this qualitative study, we conducted semistructured interviews with clinicians engaged in GWCC recruited via purposive and snowball sampling. We first conducted a deductive content analysis using constructs from Donabedian's framework for health care quality (structure, process, and outcomes) followed by inductive thematic analysis within these constructs. RESULTS: We completed 20 interviews with clinicians who deliver or research GWCC in 11 institutions across the United States. Four major themes around equitable health care delivery in GWCC emerged from clinicians' perspectives: 1) shifts in power dynamics (process); 2) enabling relational care, social support, and a sense of community (process, outcome); 3) centering multidisciplinary care delivery around patient and family needs (structure, process, and outcomes); and 4) unaddressed social and structural barriers limit patient and family participation. CONCLUSIONS: Clinicians perceived that GWCC enhances equity in health care delivery by shifting hierarchies in clinical visits and promoting relational, patient, and family-centered care. However, potential opportunities exist to further address provider implicit bias in group care delivery and structural inequities at the level of the health care institution. Clinicians underscored the need to address barriers to participation so that GWCC can more fully enhance equitable health care delivery.
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Psychoeducation, where clinicians teach problem-solving skills in a supportive environment, can help address families' social vulnerabilities and promote well-being. Group well-child care (GWCC) may provide unique opportunities for pediatric residents to improve their skills in psychoeducation. Our aim was to characterize pediatric residents' perspectives and experiences of communication while conducting both individual well-child care and GWCC. We used a longitudinal qualitative study design to conduct 15 semistructured interviews with five pediatric residents who facilitated GWCC. Using the constant comparative method, we characterized pediatric residents' perspectives and experiences of communication while conducting both individual well-child care and GWCC. Four themes emerged. Residents perceived that GWCC (i) enabled families to honestly share their knowledge and parenting practices, (ii) allowed time and a space for families to share personal stories and scenarios, (iii) facilitated discussions of maternal health and psychosocial matters, toward which residents felt ambivalence, and (iv) fostered skills in psychoeducation that transferred to the rest of their clinical practice. When pediatric residents lead GWCC, they perceive that they can facilitate key aspects of psychoeducation, enabling them to assist families in meeting complex social needs. Residents describe that they transfer psychoeducation skills learned in GWCC to the rest of their practice.
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Internado y Residencia , Pediatría , Humanos , Niño , Cuidado del Niño , Crianza del Niño , Salud InfantilRESUMEN
OBJECTIVE: To identify factors associated with participation in group well-child care (GWCC), wherein families share preventive health care visits. METHODS: We extracted electronic health record data of mother-infant dyads with infants born 2013-18 at Yale New Haven Hospital and followed at the primary care center. Using chi-square analysis and multivariate logistic regression, we examined the extent to which 1) maternal/infant characteristics and recruitment timing were associated with GWCC initiation and continued engagement and 2) initiation was associated with primary care visits. RESULTS: Of 2046 eligible mother-infant dyads, 11.6% initiated GWCC. The odds of initiation were higher among mothers with Spanish versus English primary language (odds ratio: 2.36 [95% confidence interval: 1.52-3.66]), with 1 child versus ≥ 3 children (1.58 [1.13-2.22]), and of non-Hispanic Black versus non-Hispanic White infants (2.72 [1.39-5.32]). Initiation was lower among infants born in 2016 (0.53 [0.32-0.88]) and 2018 (0.29 [0.17-0.52]) versus 2013. Among GWCC initiators with follow-up data (n = 217), continued engagement (n = 132, 60.8%) was positively associated with maternal age of 20-29 years (2.85 [1.10-7.34]) and > 30 years (3.46 [1.15-10.43]) compared with< 20 years, and mothers with 1 child versus ≥ 3 (2.28 [1.04-4.98]). GWCC initiators, versus non-initiators, had 5.06 times higher adjusted odds of attending > 9 primary care appointments in the first 18 months (95% confidence interval: 3.74-6.85). CONCLUSIONS: As evidence builds on health and social benefits of GWCC, recruitment efforts may gain from considering multi-level socio-economic, demographic, and cultural factors associated with GWCC participation. Higher participation among systemically marginalized groups may present unique opportunities for family-based health promotion to mitigate health inequities.
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OBJECTIVE: To evaluate the Healthy Eating through Group Well-Child Care (GWCC) intervention, a Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) and primary care partnership which seeks to promote responsive feeding practices among low-income caregivers, by examining its impact on infant growth and exploring the experiences of caregivers who participated in this intervention. METHODS: Using a difference-in-differences approach, we examined change in weight-for-length among infants in GWCC before versus after implementation of the intervention compared with infants in individual well-child care (IWCC) over the same time-period. In parallel, we conducted semi-structured interviews in English and Spanish with caregivers who participated in the intervention to explore their perspectives and analyzed transcripts via the constant comparative method to identify salient themes. RESULTS: Using electronic health record data from 279 GWCC and 6134 IWCC participants, we found no significant difference in first-year weight-for-length trajectory associated with participation in the intervention. We reached thematic saturation after 19 interviews with 22 caregivers and identified four major themes around feeding: 1) structural barriers limit access to healthy foods through WIC, 2) conflicting sources of nutrition advice challenge parental decision making, 3) exposure to novel foods facilitated further experimentation with healthier foods, and 4) discussion of responsive feeding facilitated awareness and adoption. CONCLUSIONS: A primary care and WIC partnership to promote responsive feeding in the context of GWCC was well received by caregivers but was not associated with improved weight-for-length among infants. Structural barriers to implementing responsive feeding and healthy eating practices may have impacted lack of measurable results from the intervention.
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Cuidado del Niño , Asistencia Alimentaria , Lactante , Humanos , Femenino , Niño , Peso Corporal , Conducta Alimentaria , Alimentos , Atención Primaria de SaludRESUMEN
The Volunteer Income Tax Assistance (VITA) program is an underutilized free taxpreparation service that directly addresses poverty by maximizing tax refunds. A pediatric medical home (PMH) with an embedded VITA site provides an excellent opportunity for a medical-financial partnership. We sought to assess the knowledge, attitudes, and practices of caregivers of children who used a PMH after embedding a VITA site. We found that a PMH-VITA site was a convenient, trusted, useful, and potentially tax-filing behaviorchanging intervention. Importantly, most caregivers who did not use the PMH-VITA site had no knowledge of availability of free tax filing services but would consider using one the following year. Improved marketing is needed to increase utilization in our target population.
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Impuesto a la Renta , Pobreza , Niño , Humanos , Asistencia Médica , Atención Dirigida al Paciente , VoluntariosRESUMEN
Refugee children are at risk for mental/behavioral health problems but may not receive timely diagnosis or care. Parental experiences and perspectives about resources in the US may help guide interventions to improve mental/behavioral health care. In a community-academic partnership, we performed a qualitative study of recently-arrived Afghan refugee parents, using in-depth, semi-structured interviews to characterize experiences with parenting, education, and health care services. A four-person coding team identified, described, and refined themes. We interviewed 19 parents from ten families, with a median residence in the US of 24 months. Four themes emerged; parents described: (1) shifting focus as safety needs changed, (2) acculturation stress, (3) adjustment to an emerging US support system, and (4) appreciation of an engaged health care system. Health and educational providers' appreciation for the process of acculturation among newly-arrived refugee Afghan families may facilitate screening, diagnostic, and intervention strategies to improve care.
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Servicios de Salud Mental , Refugiados , Niño , Humanos , Salud Mental , Responsabilidad Parental , Padres/psicologíaRESUMEN
BACKGROUND AND OBJECTIVES: Children seeking care in the emergency department (ED) for mental health conditions are at risk for prolonged length of stay (LOS). A more contemporary description of trends and visit characteristics associated with prolonged ED LOS at the national level is lacking in the literature. Our objectives were to (1) compare LOS trends for pediatric mental health versus non-mental health ED visits and (2) explore patient-level characteristics associated with prolonged LOS for mental health ED visits. METHODS: We conducted an observational analysis of ED visits among children 6 to 17 years of age using the National Hospital Ambulatory Medical Care Survey (2005-2015). We assessed trends in rates of prolonged LOS and the association between prolonged LOS and demographic and clinical characteristics (race and ethnicity, payer type, and presence of a concurrent physical health diagnosis) using descriptive statistics and survey-weighted logistic regression. RESULTS: From 2005 to 2015, rates of prolonged LOS for pediatric mental health ED visits increased over time from 16.3% to 24.6% (LOS >6 hours) and 5.3% to 12.7% (LOS >12 hours), in contrast to non-mental health visits for which LOS remained stable. For mental health visits, Hispanic ethnicity was associated with an almost threefold odds of LOS >12 hours (odds ratio 2.74; 95% confidence interval 1.69-4.44); there was no difference in LOS by payer type. CONCLUSIONS: The substantial rise in prolonged LOS for mental health ED visits and disparity for Hispanic children suggest worsening and inequitable access to definitive pediatric mental health care. Policy makers and health systems should work to provide equitable and timely access to pediatric mental health care.
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Servicio de Urgencia en Hospital/estadística & datos numéricos , Tiempo de Internación/estadística & datos numéricos , Trastornos Mentales/terapia , Adolescente , Niño , Estudios Transversales , Femenino , Humanos , Masculino , Estados UnidosRESUMEN
OBJECTIVE: To evaluate the effect of a forced disruption to Medicaid managed care plans and provider networks on health utilization and outcomes for children with persistent asthma. DATA SOURCES: Medicaid managed care administrative claims data from 2013 to 2016, obtained from a southeastern state. STUDY DESIGN: A difference-in-difference analysis compared patients' outpatient, inpatient, and emergency department (ED) utilization and receipt of recommended services before and after implementation of a statewide redistribution of patients among nine managed care plans. DATA COLLECTION/EXTRACTION METHODS: Enrollment data for children with asthma were linked to the administrative claims. Children were included if they had a diagnosis of persistent asthma in 2013 and if they were enrolled continuously throughout 2014-2016. PRINCIPAL FINDINGS: Among the 28 537 children with asthma, 26% were forced to switch their managed care plan after the redistribution. Of these, 67% also switched their primary care provider (PCP). Relative to those who remained in their plan, disruption was associated with an additional 2.1 percentage-point decrease in the number of children who had an outpatient visit per quarter [95%CI -2.8, -1.3], from 71% to 66% (compared to plan stayers: 74% to 71%). Among children experiencing a change to their plan, there was overall a decrease in the proportion of children receiving an asthma-specific visit per quarter, but there was less of a decrease in children that also changed their PCP [1.6 percentage points, 95%CI 0.7, 2.5], from 9.7% to 8.3% (compared to those who did not switch their PCP: 12% to 8.6%). Indicators of asthma care quality and emergent care utilization were not significantly different between the two periods. CONCLUSIONS: While there was a decrease in the number of outpatient visits associated with forced disruption of Medicaid managed care plans for children with persistent asthma, there were no consistent associations with worse asthma quality performance or higher emergent health care utilization.
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Asma/epidemiología , Programas Controlados de Atención en Salud/estadística & datos numéricos , Medicaid/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Calidad de la Atención de Salud/estadística & datos numéricos , Adolescente , Niño , Preescolar , Femenino , Servicios de Salud/estadística & datos numéricos , Humanos , Revisión de Utilización de Seguros , Estudios Longitudinales , Masculino , Características de la Residencia , Estados UnidosRESUMEN
BACKGROUND: Outpatient heart failure (HF) care involves intensive self-management (SM). Effective HF SM is associated with improved outcomes. Homelessness poses challenges to successful SM. OBJECTIVES: To identify the ways in which homelessness may impede successful SM of HF and engagement with the healthcare system. METHODS: We conducted open-ended, semi-structured interviews with homeless adults with HF. Data were analyzed by a multidisciplinary team using a grounded theory approach. RESULTS: We interviewed 19 participants, 11 (58%) of whom were homeless at the time of interview. Interviews revealed a combination of influences on HF SM. Major themes included instability and lack of routine, tradeoffs between basic necessities and HF SM, and stigmatization by healthcare providers. CONCLUSIONS: Anticipatory guidance aimed at the unique challenges faced by homeless individuals with HF may aid successful SM. HF providers should simlpify medication regimes and engage in non-stigmatizing discourse. Larger-scale interventions include the creation of medical respite programs.
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Insuficiencia Cardíaca , Personas con Mala Vivienda , Adulto , Consejo , Personal de Salud , Insuficiencia Cardíaca/terapia , Humanos , Investigación CualitativaRESUMEN
BACKGROUND AND OBJECTIVE: Children and youth in immigrant families (CIF)-children and youth with at least 1 foreign-born parent-face unique psychosocial stressors. Yet little is known about access to mental and behavioral health (MBH) services for CIF. Among US CIF and non-CIF with MBH problems, we assessed access to MBH treatment. METHODS: We used the National Survey of Children's Health-2016, a nationally representative survey of predominantly English- or Spanish-speaking US parents. The sample included 2- to 17-year-olds whose parent reported at least 1 MBH problem. The primary outcome was prior-year receipt of MBH treatment (counseling, medication, or both). RESULTS: Of 50,212 survey respondents, 7164 reported a current MBH problem (809 CIF and 6355 non-CIF). The majority of CIF were Hispanic/Latinx (56% CIF vs 13% non-CIF, P < .001). CIF were less likely than non-CIF to have an Attention Deficit Hyperactivity Disorder (ADHD) diagnosis (35% vs 59%, P < .001) and less likely to have received MBH medication and/or counseling (61% vs 71%, P = .02). This difference was pronounced for receiving medication (32% vs 50%, P < .001). When controlling for multiple covariates, differences in any MBH treatment were no longer statistically significant (adjusted odds ratios 0.76, 95% confidence interval 0.52-1.11), while the odds of receipt of medication remained significantly lower for CIF (adjusted odds ratios 0.61, 95% confidence interval 0.42-0.88). CONCLUSIONS: Among children and youth with at least 1 parent-reported MBH problem, CIF, compared with non-CIF, were less likely to receive MBH treatment, specifically medication. This may be explained, in part, by differences in the proportion of CIF and non-CIF diagnosed with ADHD.
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Trastorno por Déficit de Atención con Hiperactividad , Emigrantes e Inmigrantes , Psiquiatría , Adolescente , Trastorno por Déficit de Atención con Hiperactividad/terapia , Terapia Conductista , Humanos , Padres , Estados UnidosRESUMEN
OBJECTIVE: To analyze how engagement with a staffed family child network is associated with compliance on health and safety regulations among family day care (FDC) homes. METHODS: Publically available data on health and safety inspection violations on FDC homes were merged with engagement data from a staffed family child network. Descriptive analysis, logistic regression, and latent class analysis were used. RESULTS: Network FDC homes, compared to non-network FDC homes, were less likely to have health and safety violations in the areas of Child/Family/Staff Documentation (43.1% vs. 53.6%, p = 0.001) and Indoor Safety (36.0% vs. 42.6%, p = .041). Controlling for area median income and for decades since obtaining license, network FDC homes had fewer violations, fewer violation categories, and less variety of violation categories. Additionally, FDC homes which were not engaged with the staffed family child network but were in the city or town in which the network offered services, performed better compared to FDC homes in cities or towns without network resources. CONCLUSIONS FOR PRACTICE: The better compliance among network FDC homes and among FDC homes in cities and towns where the network offers services, suggests that the network is having positive effects on health and safety quality in FDC homes. A staffed child care network may be a means to improve child care quality and may be a means of improving educational and health outcomes for children.
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Cuidado del Niño/normas , Determinación de la Elegibilidad/estadística & datos numéricos , Estado de Salud , Seguridad del Paciente/normas , Cuidado del Niño/métodos , Cuidado del Niño/estadística & datos numéricos , Preescolar , Regulación y Control de Instalaciones/estadística & datos numéricos , Salud de la Familia/normas , Salud de la Familia/estadística & datos numéricos , Femenino , Humanos , Renta/estadística & datos numéricos , Lactante , Masculino , Seguridad del Paciente/estadística & datos numéricosRESUMEN
BACKGROUND: Survivors of gun violence may develop significant mental health sequelae and are at higher risk for reinjury through repeat violence. Despite this, survivors of gun violence often return to the community where they were injured with suboptimal support for their mental health, emotional recovery, and well-being. The goal of this study was to characterize the posthospitalization recovery experience of survivors of gun violence. METHODS: We conducted a qualitative research study with a community-based participatory research approach. In partnership with a community-based organization, we conducted in-depth one-on-one interviews and used snowball sampling to recruit survivors of gun violence. We applied the constant comparison method of qualitative analysis to catalogue interview transcript data by assigning conceptual codes and organizing them into a consensus list of themes. We presented the themes back to the participants and community members for confirmation. RESULTS: We conducted 20 interviews with survivors of gun violence; all were black men, aged 20 years to 51 years. Five recurring themes emerged: (1) Isolation, physical and social restriction due to fear of surroundings; (2) Protection, feeling unsafe leading to the desire to carry a gun; (3) Aggression, willingness to use a firearm in an altercation; (4) Normalization, lack of reaction driven by the ubiquity of gun violence in the community; and (5) Distrust of health care providers, a barrier to mental health treatment. CONCLUSION: Survivors of gun violence describe a disrupted sense of safety following their injury. As a result, they experience isolation, an increased need to carry a firearm, a normalization of gun violence, and barriers to mental health treatment. These maladaptive reactions suggest a mechanism for the violent recidivism seen among survivors of gun violence and offer potential targets to help this undertreated, high-risk population. LEVEL OF EVIDENCE: Care management/Therapeutic V.
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Negro o Afroamericano/psicología , Violencia con Armas , Salud Mental , Sobrevivientes/psicología , Heridas por Arma de Fuego/psicología , Adulto , Agresión , Investigación Participativa Basada en la Comunidad , Miedo , Armas de Fuego/estadística & datos numéricos , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Investigación Cualitativa , Aislamiento Social , ConfianzaRESUMEN
Well-child care has suboptimal outcomes regarding adherence to appointments and recall of guidance, especially among families facing structural barriers to health. Group well-child care (GWCC) aims to improve these outcomes by enhancing anticipatory guidance discussions and peer education. We conducted a randomized controlled trial, comparing GWCC with traditional, individual well-child care (IWCC) and assessed health care utilization, immunization timeliness, recall of anticipatory guidance, and family-centered care. Ninety-seven mother-infant dyads were randomized to GWCC or IWCC. Compared with IWCC infants, GWCC infants attended more of the 6 preventive health visits (5.41 vs 4.87, P < .05) and received more timely immunization at 6 months and 1 year but did not differ in emergency or hospital admission rates. There were no differences in mothers' reports of anticipatory guidance received or family-centered care. As primary care is redesigned for value-based care and structural vulnerabilities are considered, GWCC may be a key option to consider.
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Servicios de Salud del Niño/estadística & datos numéricos , Cooperación del Paciente/estadística & datos numéricos , Servicios Preventivos de Salud/estadística & datos numéricos , Vacunación/estadística & datos numéricos , Humanos , Lactante , TiempoRESUMEN
OBJECTIVES: Family and medical provider perceptions of communication barriers within the PICU are poorly understood. We designed a qualitative study to characterize the perspective of families and medical providers of critically ill children regarding communication barriers. The identified barriers may be used to direct efforts to improve communication. DESIGN: Semi-structured interviews were conducted from August 2017 to January 2018. Interviews were audio recorded and professionally transcribed verbatim. SETTING: A PICU at a tertiary care academic center. PATIENTS: Forty-two families whose children were admitted to the PICU (excluding patients receiving end-of-life care or with protective services involvement) and 12 PICU staff members, including nurses, residents, fellows, and attending's. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: An interprofessional team of a physician, nurse manager, and medical student coded the transcripts. Interviewing continued until thematic saturation was reached. Codes were organized into common themes using a modified constant comparative method. The families interviewed represented 16 previously healthy children, and 26 children with a chronic health condition. Staff interviewed included three residents, three fellows, three attending intensivists, and three nurses. Participants' perceptions and experiences of barriers to communication included the following: 1) Communication breakdowns related to coordination of care among several services, 2) Family-centered rounds are insufficient for effective communication, 3) Undervaluing the knowledge of families of children with chronic health conditions or special needs, and 4) Communication breakdowns occur across provider hand-offs. Theme 3 was identified by families, but not by providers. CONCLUSIONS: Families and medical providers both identified several barriers to communication. However, only families identified the barrier "Undervaluing the knowledge of families with chronically ill children." Future work should explore these barriers and the discrepancy in perception between providers and families to determine if there are interventions that improve both family satisfaction and patient care.
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Actitud del Personal de Salud , Barreras de Comunicación , Familia/psicología , Unidades de Cuidado Intensivo Pediátrico , Centros Médicos Académicos/organización & administración , Adolescente , Niño , Preescolar , Comunicación , Continuidad de la Atención al Paciente/organización & administración , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Lactante , Recién Nacido , Entrevistas como Asunto , Masculino , Pase de Guardia/normas , Relaciones Profesional-Familia , Investigación Cualitativa , Factores Socioeconómicos , Centros de Atención TerciariaRESUMEN
Objective Alternative primary care structures such as group well-child care (GWCC) may enhance care for families, particularly those subject to structural vulnerabilities such as poverty or restrictive immigration policies. The purpose of this study was to characterize how group dynamics in GWCC impact the perceptions of low-income, immigrant, and/or Spanish-speaking parents of health services. Methods Using Spanish and English interview guides that were conceptually identical, we conducted semi-structured interviews with parents who elected to participate in GWCC at an urban academic center. We drew from directed content analysis, grounded theoretically in the Andersen model of health services utilization. Modeling a bilingual, multicultural analytic strategy, we preserved the narrative of participants in the source language through all stages of analysis. Results From March through August 2017, we interviewed 22 caregivers in their preferred language. Most (82%) were mothers and half spoke Spanish only. Three themes emerged: participants perceived that (1) GWCC facilitates their and their peers' discovery of inherent expertise, which moderates parents' use of health services, (2) GWCC encourages rearrangements of hierarchies of knowledge, professional roles and genders; and (3) in the context of structural vulnerabilities, relationships formed in GWCC facilitate collective efficacy. Conclusions for Practice By considering the self and peer as sources of health-related expertise, GWCC may extend current theoretical models of health services utilization. GWCC provides opportunities to impact health services utilization among families subject to structural vulnerabilities.
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Servicios de Salud del Niño/estadística & datos numéricos , Protección a la Infancia , Padres/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Adolescente , Adulto , Preescolar , Femenino , Humanos , Entrevistas como Asunto/métodos , Masculino , Aceptación de la Atención de Salud/psicología , Investigación CualitativaRESUMEN
Objectives Innovative mental health care delivery models have been proposed as a method to address disparities in access and utilization. The aim of this study is to characterize patients' perspectives and experiences of participating in one such innovative delivery model, group cognitive behavioral therapy within a supermarket setting. Methods In this qualitative study, 16 mothers were interviewed to explore their experiences and perspectives of receiving group-based cognitive behavioral therapy in a supermarket setting, as part of their participation in an academic-community research collaborative whose mission is to address mental health needs within low-resourced communities. Data from semi-structured interviews were analyzed using inductive coding. Results Five themes related to receiving mental health services in a supermarket setting emerged from the data: (1) Participants reported a convergence of life stressors and their introduction to supermarket-based services; (2) Participants perceived the supermarket setting as convenient; (3) Participants perceived the supermarket setting as less stigmatizing; (4) Participants perceived services in the supermarket as an acceptable form of mental health treatment; and (5) Participants described the program staff as an influential component of their treatment experience. Conclusions Understanding patient experiences of various service delivery models is critical to improving access to treatment and addressing disparities in mental health service utilization and outcomes. This study supports the use of innovative delivery models to increase access to mental health services in low-resourced communities.
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Comportamiento del Consumidor , Servicios de Salud Mental/normas , Madres/psicología , Adulto , Terapia Cognitivo-Conductual/métodos , Femenino , Humanos , Servicios de Salud Mental/tendencias , Persona de Mediana Edad , Sector Público , Investigación CualitativaRESUMEN
BACKGROUND: Patient-centeredness is a characteristic of high-quality medical care and requires engaging community members in health systems' decision-making. One key patient engagement strategy is patient, family, and community advisory boards/councils (PFACs), yet the evidence to guide PFACs is lacking. Systematic reviews on patient engagement may benefit from patient input, but feasibility is unclear. METHODS: A team of physicians, researchers, and a PFAC member conducted a systematic review to examine the impact of PFACs on health systems and describe optimal strategies for PFAC conduct. We searched MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and Social Science Citation Index from inception through September 2016, as well as pre-identified websites. Two reviewers independently screened and abstracted data from studies, then assessed randomized studies for risk of bias and observational studies for quality using standardized measures. We performed a realist synthesis-which asks what works, for whom, under what circumstances-of abstracted data via 12 monthly meetings between investigators and two feedback sessions with a hospital-based PFAC. RESULTS: Eighteen articles describing 16 studies met study criteria. Randomized studies demonstrated moderate to high risk of bias and observational studies demonstrated poor to fair quality. Studies engaged patients at multiple levels of the health care system and suggested that in-person deliberation with health system leadership was most effective. Studies involving patient engagement in research focused on increasing study participation. PFAC recruitment was by nomination (n = 11) or not described (n = 5). No common measure of patient, family, or community engagement was identified. Realist synthesis was enriched by feedback from PFAC members. DISCUSSION: PFACs engage communities through individual projects but evidence of their impact on outcomes is lacking. A paucity of randomized controlled trials or high-quality observational studies guide strategies for engagement through PFACs. Standardized measurement tools for engagement are needed. Strategies for PFAC recruitment should be investigated and reported. PFAC members can feasibly contribute to systematic reviews. REGISTRATION AND FUNDING SOURCE: A protocol for record eligibility was developed a priori and was registered in the PROSPERO database of systematic reviews (registration number CRD42016052817). The Department of Veterans Affairs' Office of Academic Affiliations, through the National Clinician Scholars Program, funded this study.
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Comités Consultivos/organización & administración , Investigación Participativa Basada en la Comunidad/métodos , Participación del Paciente , Atención Dirigida al Paciente/organización & administración , Humanos , Relaciones Profesional-Familia , Investigación CualitativaRESUMEN
OBJECTIVE: To identify challenges that disadvantaged adults with asthma face in mitigating social and environmental factors associated with poor symptom control. METHODS: Using a community-engaged approach, we partnered with a community health center in New Haven, CT to conduct in-person interviews and a written survey of asthmatic adults with poor symptom control. Using the constant comparative method, we analyzed participant interviews to establish emerging themes and identify common barriers to improved outcomes. Through a written survey utilizing clinically validated questions, we assessed information on access to medical care, asthma control, and selected social and environmental risk factors. RESULTS: Twenty-one patients (mean age 47, 62% female, 71% Black, 95% insured by Medicaid) participated. The average Asthma Control Test (ACT) score was 11.6. Seventy-six percent of participants were currently employed and of those, 75% reported work-related symptoms. Among participants currently in housing, 59% reported exposure to domiciliary mice and 47% to mold. We identified three themes that summarize the challenges the study participants face: 1) Lack of knowledge about home and workplace asthma triggers; 2) Lack of awareness of legal rights or resources available to mitigate adverse conditions in the home or work environment; and 3) Fear of retaliation from landlords or employers, including threats of eviction, sexual assault, and job loss. CONCLUSION: Patients with poorly controlled asthma in a disadvantaged urban northeast community identified common barriers in both the domestic and work environments that impeded attainment of symptom control. These challenges may be best addressed through legal advocacy for those most at risk.