Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals.

INTRODUCTION: This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. METHOD: This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. RESULTS: The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. DISCUSSION: To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.

Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.

Assisted living (AL) communities are experiencing rising levels of resident acuity, challenging efforts to balance person-centered care-which prioritizes personhood, autonomy, and relationship-based care practices-with efforts to keep residents safe. Safety is a broad-scale problem in AL that encompasses care concerns (e.g., abuse/neglect, medication errors, inadequate staffing, and infection management) as well as resident issues (e.g., falls, elopement, and medical emergencies). Person and family engagement (PFE) is one approach to achieving a balance between person-centered care and safety. In other settings, PFE interventions have improved patient care processes, outcomes, and experiences. In this paper, we describe the protocol for a multiple methods AHRQ-funded study (Engage) to develop a toolkit for increasing resident and family engagement in AL safety. The study aims are to engage AL residents and family caregivers, AL staff, and other AL stakeholders to (1) identify common AL safety problems; (2) prioritize safety problems and identify and evaluate existing PFE interventions with the potential to address safety problems in the AL setting; and (3) develop a testable toolkit to improve PFE in AL safety. We discuss our methods, including qualitative interviews, a scoping review of existing PFE interventions, and stakeholder panel meetings that involved a Delphi priority-setting exercise. In addition to describing the protocol, we detail how we modified the protocol to address the unique challenges of the COVID-19 pandemic. Study findings will result in a toolkit to improve resident and family engagement in the safety of AL that will be tested in future research.

"Supporting Wellness": A depression and bipolar support alliance mixed-methods investigation of lived experience perspectives and priorities for mood disorder treatment.

BACKGROUND: The lived experience of people with mood disorders may be leveraged to inform priorities for research, define key treatment outcomes, and support decision-making in clinical care. The aim of this mixed-methods project was to provide insight into how people with depression and bipolar disorder experience the impact of symptoms, their treatment preferences, and their definitions of wellness. METHODS: The project was implemented in two phases. In Phase 1, community-based participatory research was used to develop a web-based survey enquiring about living with a mood disorder, treatment experiences, and wellness priorities. In Phase 2, a series of focus groups were conducted to explore aspects of wellness in greater detail. RESULTS: Respondents (n= 6153) described the symptoms of mood disorders as having a significant, chronic impact on their lives. A holistic approach to treatment was desired by participants, but not necessarily experienced. Qualitative findings were used to further describe four highly ranked wellness priorities identified in the survey: ability to act independently or according to my own will; purpose in life; getting through the day; and contentment. LIMITATIONS: Experience of a mood disorder was self-reported, and no formal confirmation of diagnosis occurred. Although the survey could not incorporate all possible wellness definitions, this was supplemented by qualitative focus groups. CONCLUSION: The present findings provide important insights from the perspectives of individuals with lived experience of mood disorders. Implications of this for research and clinical practice are discussed, particularly with regards to measurement-based care and use of wellness-oriented clinical outcome assessments.

Understanding Consumer Perceptions and Awareness of Hospital-Based Maternity Care Quality Measures.

OBJECTIVE: To explore factors that may influence use of comparative public reports for hospital maternity care. DATA SOURCES: Four focus groups conducted in 2013 with 41 women and preintervention survey data collected in 2014 to 2015 from 245 pregnant women in North Carolina. STUDY DESIGN: As part of a larger randomized controlled trial, we conducted qualitative formative research to develop an intervention that will be evaluated through pre- and postintervention surveys. DATA EXTRACTION METHODS: Analysis of focus group transcripts examined participants' perceptions of high-quality maternity care and the importance of different quality measures. Quantitative analysis included descriptive results of the preintervention survey and subgroup analyses to examine the impact of race, education, and being a first-time mom on outcomes. PRINCIPAL FINDINGS: When describing high-quality maternity care, participants focused on interactions with providers, including respect for preferences and communication. The importance of quality measures was influenced by the extent to which they focused on babies' health, were perceived as the hospital's responsibility, and were perceived as representing "standard care." At baseline, 28 percent of survey respondents had used quality information to choose a hospital. Survey respondents were more aware of some quality measures (e.g., breastfeeding support) than others (e.g., episiotomy rates). CONCLUSIONS: Public reporting efforts could help increase relevance of maternity care quality measures by creating measures that reflect women's concerns, clearly explaining the hospital's role in supporting quality care, and showing how available quality measures can inform decisions about childbirth.

Creating Change in Health Care: Developing a Shared Understanding and Roadmap for Action.

The Patient and Family Engagement Framework and the Roadmap for Patient and Family Engagement in Healthcare Practice and Research are tools designed to create a shared understanding of what patient and family engagement is and how it can be translated into concrete action.

Patient and family engagement: a framework for understanding the elements and developing interventions and policies.

Patient and family engagement offers a promising pathway toward better-quality health care, more-efficient care, and improved population health. Since definitions of patient engagement and conceptions of how it works vary, we propose a framework. We first present the forms engagement can take, ranging from consultation to partnership. We discuss the levels at which patient engagement can occur across the health care system, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making. We also discuss the factors that influence whether and to what extent engagement occurs. We explore the implications of our multidimensional framework for the development of interventions and policies that support patient and family engagement, and we offer a research agenda to investigate how such engagement leads to improved outcomes.

Engaged patients will need comparative physician-level quality data and information about their out-of-pocket costs.

For patients to be engaged, they will need meaningful and comparable information about the quality and cost of health care. We conducted a literature review and key-informant interviews, reviewed selected online reporting tools, and found that quality and cost reporting fell into two categories. One emphasizes public reporting of information, supported by philanthropic or government institutions that aim to improve provider quality and efficiency. The other is characterized by proprietary websites that aim to provide personalized, integrated information on cost and quality to support consumers' decision making on providers and services. What consumers seem to want is quality data at the physician level and cost data that reflect their personal out-of-pocket exposure. These needs will be acute under the coverage expansions inherent in the Affordable Care Act. State and federal policy thus should support all-payer claims databases, standards for electronic health records to facilitate sharing of quality data, and a unified approach to presenting information that prioritizes consumers' needs.

Understanding women's interpretations of infant formula advertising.

BACKGROUND: Exclusive breastfeeding for 6 months and continued breastfeeding for at least 1 year is recommended by all major health organizations. Whereas 74.6 percent of mothers initiate breastfeeding at birth, exclusivity and duration remain significantly lower than national goals. Empirical evidence suggests that exposure to infant formula marketing contributes to supplementation and premature cessation. The objective of this study was to explore how women interpret infant formula advertising to aid in an understanding of this association. METHODS: Four focus groups were structured to include women with similar childbearing experience divided according to reproductive status: preconceptional, pregnant, exclusive breastfeeders, and formula feeders. Facilitators used a prepared protocol to guide discussion of infant formula advertisements. Authors conducted a thematic content analysis with special attention to women's statements about what they believed the advertisements said about how the products related to human milk (superior, inferior, similar) and how they reported reacting to these interpretations. RESULTS: Participants reported that the advertisements conveyed an expectation of failure with breastfeeding, and that formula is a solution to fussiness, spitting up, and other normal infant behaviors. Participants reported that the advertisements were confusing in terms of how formula-feeding is superior, inferior or the same as breastfeeding. This confusion was exacerbated by an awareness of distribution by health care practitioners and institutions, suggesting provider endorsement of infant formula. CONCLUSIONS: Formula marketing appears to decrease mothers' confidence in their ability to breastfeed, especially when provided by health care practitioners and institutions. Therefore, to be supportive of breastfeeding, perinatal educators and practitioners could be more effective if they did not offer infant formula advertising to mothers.