Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study

Anderson, Gera; Heller, S. Megan; Pulido, Esmeralda; Williams, Pluscedia; Orduna, Alisa; Bromley, Elizabeth; Booker‐Vaughns, Juanita

doi:10.18865/ed.28.s2.365

Cited by 3 publications

(23 citation statements)

References 12 publications

(9 reference statements)

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“…persistent at 3 years [PHQ-8 score ≥15] depression), ethnicity (African American and Latino), sex, and intervention status (CEP vs . RS) to better understand heterogeneity in priorities within this population (Anderson et al, 2018). We contacted 163 and recruited 104 (64%) clients (23 could not be reached; 20 had incorrect contact information; 14 initially agreed but could not be reached subsequently; and 2 refused).…”

Section: Methodsmentioning

confidence: 99%

“…Semistructured interviews were conducted in English and Spanish over the phone between February and July 2014 by trained study staff including community members (Anderson et al, 2018) and audiorecorded. Details on the interview methods have been previous reported (Khodyakov et al, 2018), and relevant questions from the interview guide are provided in Supplementary Table 1 (Supplemental Digital Content 1, http://links.lww.com/JNMD/A144).…”

Section: Methodsmentioning

confidence: 99%

“…We sought to assemble a diverse sample for interviewing of approximately 100 of 600 CPIC clients completing 3-year follow-up surveys. We designed a sampling strategy to ensure diversity among clients in terms of their depression status (improved at 3 years [PHQ-8 score <10] vs. persistent at 3 years [PHQ-8 score ≥15] depression), ethnicity (African American and Latino), sex, and intervention status (CEP vs. RS) to better understand heterogeneity in priorities within this population (Anderson et al, 2018). We contacted 163 and recruited 104 (64%) clients (23 could not be reached; 20 had incorrect contact information; 14 initially agreed but could not be reached subsequently; and 2 refused).…”

Section: Three-year Follow-up Questionnairementioning

confidence: 99%

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Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression

et al. 2022

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The long-term course of depression is not well-understood among minority women. We assessed depression trajectory, barriers to depression care, and life difficulties among minority women accessing health and social service programs as part of the Community Partners in Care study. Data include surveys (N = 339) and interviews (n = 58) administered at 3-year follow-up with African American and Latina women with improved versus persistent depression. The majority of the sample reported persistent depression (224/339, 66.1%), ≥1 barrier to mental health care (226/339, 72.4%), and multiple life difficulties (mean, 2.7; SD, 2.3). Many barriers to care (i.e., related to stigma and care experience, finances, and logistics) and life difficulties (i.e., related to finances, trauma, and relationships) were more common among individuals reporting persistent depression. Results suggest the importance of past experiences with depression treatment, ongoing barriers to care, and negative life events as contributors to inequities in depression outcomes experienced by minority women.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Three-year Follow-up Questionnairementioning

confidence: 99%

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Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression

et al. 2022

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“…Subgroups considered "hard-to-reach" were often perceived as "vulnerable" by the organisations that serve them. Tis may result in paternalistic tendencies or gatekeeping which can undermine eforts to include them in the research [2,3,5,14,15,20,24,32]. To overcome this, opportunities for reciprocity facilitate social connections and engender trust in the researcher and their intentions [2,10,19,20,27].…”

Section: Trust and Rapportmentioning

confidence: 99%

“…Tis afrms and validates the time commitment by "participants." A shift in the mindset of researchers is required, from "information to be conveyed" to working with and building capacity of the "participants" to amplify their voices, take ownership of and disseminate the fndings, and to act and advocate accordingly [7,12,15,24,25,32,33]. Tis is further described in the theme "beyond participation."…”

Section: Trust and Rapportmentioning

confidence: 99%

Working towards the Active Participation of Underrepresented Populations in Research: A Scoping Review and Thematic Synthesis

Gallegos

Durham

Rutter

et al. 2023

Health & Social Care in the Community

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Research has historically focussed on participants who are relatively easy to access; those who have resources (time and literacy) to respond to surveys, who can travel, and are socially connected. Failure to meaningfully engage with intended participants and achieve representativeness in participation risks diminishing the applicability and impact of research findings to local contexts. Motivated by goals of social justice and health equity, this scoping review sought to identify strategies to effectively engage and integrate the “authentic voice” of populations that are described as vulnerable or precarious and therefore perceived as “hard-to-reach.” A system tic search strategy identified 34 eligible papers. Articles underwent (i) a title and abstract screening by two reviewers, followed by (ii) a full text review of eligible articles by one author. Free-form research problem mind-mapping was applied to facilitate analysis and generate creative associations between ideas. Thematic and content analysis was then applied to generate themes and subthemes. Four high-level themes emerged: key players, trust and rapport, navigating structural precarity, and moving beyond “participation.” We identified that substantial shifts in researcher mindsets are required to reframe perceptions of vulnerability and move towards strengths-based approaches. Efforts need to be directed towards establishing deep trust and rapport through early engagement and social reciprocity. Systemic barriers to research participation and partnership must be addressed to overcome issues of structural precarity. We urge researchers and practitioners to embrace “scholar activism” and to actively dismantle the precarity that limits active “participation” and to build deliberate strategies to create forums where the “authentic” voice can be amplified.

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A systematic review of community-based participatory research studies involving individuals with mental illness.

Nieweglowski,

Sheehan,

Deshpande

2024

Psychiatric Rehabilitation Journal

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Objective: This systematic review examined community-based participatory research (CBPR) studies in which people with mental illness (PWMI) directly contributed to research projects. The purpose was to describe study characteristics, team structure and logistics, and level of involvement of in the research process. Method: We searched the PsycINFO database from January 2000 to July 2020, identifying 1,395 records and analyzing the 31 that met inclusion criteria. Articles were eligible if they were (a) published in English in a peer-reviewed journal; (b) explicitly stated that at least one adult with mental illness assisted with the study as a CBPR team member; and (c) included a research outcome. Results: Most studies collected qualitative data. Project length, team composition, and frequency of meetings were not specified in about one third of the articles. Twenty-nine studies reported involvement of people with mental illness in research activities such as recruitment, data collection, transcription, and analysis. Nearly half did not specify if they received any training. Conclusions and Implications for Practice: Individuals with mental illness were heavily involved in planning and conducting research, demonstrating the feasibility of meaningful involvement. Future research should consider how people with lived experience can assist with quantitative methods, and articles should clearly and explicitly describe characteristics of the partnership (e.g., team composition, frequency of meetings, compensation). The protocol is published in Open Science registry at https://osf.io/mshfb. Impact and ImplicationsCommunity-based participatory research (CBPR) studies involving people with mental illness span four areas: understanding health care and societal experiences, identifying needs and barriers, developing interventions, and examining their impact. Most were qualitative, suggesting more training is required for quantitative studies. Articles did not consistently report project length, meeting frequency, compensation, or dissemination, but this information is necessary to maintain transparency and highlight benefits of involving people with lived experience in CBPR.

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Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study

Cited by 3 publications

References 12 publications

Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression

Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression

Working towards the Active Participation of Underrepresented Populations in Research: A Scoping Review and Thematic Synthesis

A systematic review of community-based participatory research studies involving individuals with mental illness.

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