Disparities in Shared Decision Making and Service Receipt Among Children with Special Health Care Needs and Developmental Delay: A National Survey Analysis | Journal of Primary Care and Community Health
Monica Perez Jolles , Leah L. Zullig, Pey-Jiuan Lee, and Gauri Kolhatkar
2020. Abstract Shared decision making (SDM) is associated with increased service satisfaction among pediatric patients. Our objective was to examine the association between SDM and service use experiences across racial/ethnic child groups. This secondary data analysis used the 2009-2010 National Survey of Children with Special Health Care Needs (CSHCN) and 2011 Pathways to Diagnosis and Services Survey. We used a rank-and-replace matching approach consistent with Institute of Medicine recommendations for health disparities research. We included CSHCN aged 6 to 17 years. The exposure of interest was parents of CSHCN reporting engagement in SDM with clinicians. There were 4032 CSHCN included in analysis. CSHCNs experiencing SDM had a 16% higher probability of reporting service use compared to those not experiencing it (95% CI, 14.24-19.42). Black children experiencing SDM reported seeing all needed care providers at a lower rate than whites (79% and 87.6% respectively; 95% CI, -14.05-3.27). The benefit of SDM over not experiencing it for blacks was 12.2% less than for whites for the outcome of seeing all needed care providers. For the outcome of receiving all needed treatments and services, the SDM benefit was 9.1% lower for Hispanics compared with whites. SDM can improve service experiences but implementation flexibility may be needed.
Methods to Identify and Prioritize Research Projects and Perform Embedded Research in Learning Health Care Systems | Healthcare
Thearis A. Osuji, Julie Frantsve-Hawley, Monica Perez Jolles, Heather Kitzman, Carly Parry, Michael K. Gould, For the Embedded Research Conference Priorities and Methods Workgroup
2020. Background: The Embedded Healthcare Research Conference aimed to promote and enhance research-operations partnerships in diverse health care settings. Within this conference, the Priorities and Methods Workgroup set out to define a vision of embedded research that leverages diverse methods to address clearly articulated research questions of importance to health systems. Methods: The Workgroup session involved a combination of small and large group discussions around three broadly focused topics: the integration of embedded research within the existing quality improvement (QI) ecosystem; the identification, prioritization and formulation of embedded research questions; the creation of an embedded research “tool kit.” Results: Workgroup participants envisioned a future for embedded research that is characterized by authentic engagement between researchers and health system leaders; seamless integration between research, QI and clinical operations; clear and explicit articulation of research questions; an appropriate balance between rigor and relevance in applied methodology; alignment between study design, available resources and the importance of the knowledge to be gained; efficient processes; and bi-directional communication. Important barriers to achieving this vision include limited access to executive leaders, silos that discourage integration of research and QI, generally low tolerance for disruption in high-risk clinical settings, limited access to data, and limited availability of researchers with requisite skills and training. Conclusions: Embedded research holds potential to enhance the relevance, value and use of research, while also creating generalizable knowledge. Key recommendations include building authentic relationships, discouraging silos, encouraging innovation and experimentation, and expanding opportunities for funding research in delivery systems.
Core Functions and Forms of Complex Health Interventions: A Patient-Centered Medical Home Illustration | Journal of General Internal Medicine
Perez Jolles, M., Lengnick-Hall, R., Mittman, B.
Abstract Despite policy and practice support to develop and test interventions designed to increase access to quality care among high-need patients, many of these interventions fail to meet expectations once deployed in real-life clinical settings. One example is the Patient-Centered Medical Home (PCMH) model, designed to deliver coordinated care. A meta-analysis of PCMH initiatives found mixed evidence of impacts on service access, quality, and costs. Conceptualizing PCMH as a complex health intervention can generate insights into the mechanisms by which this model achieves its effects. It can also address heterogeneity by distinguishing PCMH core functions (the intervention’s basic purposes) from forms (the strategies used to meet each function). We conducted a scoping review to identify core functions and forms documented in published PCMH models from 2007 to 2017. We analyzed and summarized the data to develop a PCMH Function and Form Matrix. The matrix contributes to the development of an explicit theory-based depiction of how an intervention achieves its effects, and can guide decision support tools in the field. This innovative approach can support transformations of clinical settings and implementation efforts by building on a clear understanding of the intervention’s standard core functions and the forms adapted to local contexts’ characteristics.
Involving Latina/o parents in patient-centered outcomes research: Contributions to research study design, implementation and outcomes. | Health Experiences Journal
Pérez Jolles, M., Martinez, M., Garcia, SJ, Stein, G., MPG, Mentor Parent Group., Thomas, K.
2017 DOI: 10.1111/hex.12540.
Managerial Strategies to Influence Frontline Worker Understanding of Performance Measures in Nonprofit Child Welfare Agencies. | Nonprofit and Voluntary Sector Quarterly
Pérez Jolles, M., Collins-Camargo, C., McBeath B., Bunger, A., Chuang E.
Levels and Consequences of Embeddedness among Nonprofit Human Service Organizations: National Survey Evidence from Child Welfare. | Human Service Organizations
Bunger, A., McBeath, B., Collins-Camargo, C., Chuang, E., Perez Jolles.
Does caregiver participation in decision making within child welfare agencies influence children’s primary and mental health service use? | Child: Care, Health and Development
Pérez Jolles, M., Wells, R.
2017 DOI: 10.1111/cch.12384.
Fostering Activation Among Latino Parents of Children With Mental Health Needs | An RCT. Psychiatric Services
Thomas, KC., Livas Stein, G., Williams, C.S., Perez Jolles, M., Sleath, B.L., Prandoni, J., Martinez, M., Garcia, S.J., Guzman, L., Williams, C.E, Morrissey, J.
2017 DOI: 10.1176/appi.ps.201600366.
Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study | Child & Family Social Work
2016 Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in-depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.
Cultural and Linguistic Adaptation of a Multimedia Colorectal Cancer Screening Decision Aid for Spanish-Speaking Latinos | Journal of Health Communication
2013 As the United States becomes more linguistically and culturally diverse, there is a need for effective health communication interventions that target diverse, vulnerable populations, including Latinos. To address such disparities, health communication interventionists often face the challenge to adapt existing interventions from English into Spanish in a way that retains essential elements of the original intervention while also addressing the linguistic needs and cultural perspectives of the target population. The authors describe the conceptual framework, context, rationale, methods, and findings of a formative research process used in creating a Spanish-language version of an evidence-based (English language) multimedia colorectal cancer screening decision aid. The multistep process included identification of essential elements of the existing intervention, literature review, assessment of the regional context and engagement of key stakeholders, and solicitation of direct input from target population. The authors integrated these findings in the creation of the new adapted intervention. They describe how they used this process to identify and integrate sociocultural themes such as personalism (personalismo), familism (familismo), fear (miedo), embarrassment (verguenza), power distance (respeto), machismo, and trust (confianza) into the Spanish-language decision aid.