“If You Want to Know About the Book, Ask the Author”: Enhancing Community Engagement Through Participatory Research in Clinical Mental Health Settings

Desai, Miraj U.; Bellamy, Chyrell; Guy, Kimberly; Costa, Mark; O’Connell, Maria; Davidson, Larry

doi:10.1080/08964289.2019.1587589

Cited by 26 publications

(25 citation statements)

References 35 publications

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“…Participation in research activities was described in 14 studies (16%) 24–27,34,59–66,83 . Patients and the public participated in various ways, through advisory and face‐to‐face discussion groups, 34,62,63 virtual steering groups, 59 online surveys and workshops 26 and network activities 65 .…”

Section: Resultsmentioning

confidence: 99%

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

Cluley

Ziemann

Feeley

et al. 2022

Health Expectations

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Background: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under-reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. Methods:The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer-reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed-method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers.Results: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. Conclusion:Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation.

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Section: Resultsmentioning

confidence: 99%

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

Cluley

Ziemann

Feeley

et al. 2022

Health Expectations

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“…If future research confirms that identity-related thinking is prominent among individuals at CHR, supplementary approaches such as Acceptance and Commitment Therapy that encourage acceptance and mindfulness may also be beneficial (Reininghaus et al, 2019). Complementary or alternative strategies to support and validate identity changes for individuals at CHR might include facilitating peer support (Davidson et al, 2012; McGorry et al, 2019; Reilly et al, 2019) and creating more opportunities for individuals with lived experience to be meaningfully involved in services and research (Brown & Jones, 2021; Byrne et al, 2018; Desai et al, 2019; Jones, Atterbury, et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

A qualitative study on identity in individuals at clinical high risk for psychosis: “ … Why does it have to be one thing?”.

Sarac¹,

Bilgrami²,

Herrera³

et al. 2022

Psychiatric Rehabilitation Journal

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Objective: Qualitative research can shed light on the subjective experiences of individuals at clinical high risk (CHR) for psychosis, complement quantitative research, broaden our understanding of experiencing CHR, and inform intervention development. The aim of this study was to explore life experiences of individuals at CHR through qualitative research. Method: Participants were 37 individuals at CHR (20 male, 17 female) aged 16-34 (M age = 23.32 ± 5.26), and 16 healthy controls (HCs; 7 male, 9 female) aged

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“…Awareness of these norms and their implications is an important place to start. However, the concern is that unless these systems begin to let in more of the world and its diverse ways of being, so that the community sees themselves and their lives as reflected in it (Desai et al, 2019; Kirmayer, 2012; Sundararajan, 2018), there will continue to be incongruence. Maybe a health system in and of itself is a cultural presupposition, but there may be room to change its meaning and structure to be more responsive to (e.g., diversity) or critical of (e.g., injustice and oppression) what is around it (Bess et al, 2009; Metzl & Hansen, 2014; Vera & Speight, 2003).…”

Section: Discussionmentioning

confidence: 99%

“…Improving this process is important for many reasons, not the least of which is the possibility of reducing the pervasive health disparities found among various ethnic minority groups (Hernandez et al, 2009; Jackson, 2015). For these groups, the system has often not worked for them or, in many other cases, is rarely considered as a viable or relevant option (Atdjian & Vega, 2005; Desai et al, 2019; Gone, 2004). There thus remains a pressing need for improving mental health practices for and with culturally diverse populations.…”

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confidence: 99%

Implicit organizational bias: Mental health treatment culture and norms as barriers to engaging with diversity.

Desai

Paranamana

Restrepo-Toro

et al. 2021

American Psychologist

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There are increased efforts to improve patient-provider relations and engagement within North American mental health systems. However, it is unclear how these innovations impact care for ethnic minorities, a group that continues to face social and health disparities. This study examined one such engagement innovation-person-centered care planning-to gain a better understanding of this overall process. We specifically explored how mental health providers trained in person-centered care planning work with their patients of Latinx and Asian backgrounds. In-depth interviews were conducted with mental health providers in community clinics, and narratives were analyzed via phenomenological methods. Findings revealed that regardless of specific practice innovations, it was providers' own embeddedness in their mental health organizational culture that became conspicuous as a determinant of care. This culture contained implicit preferences for clients considered to be ideal (e.g., are verbal, admit a problem or illness, accept services, and are individually oriented). These clients were experienced as ideal largely because they helped the system operate efficiently. Findings suggest that these organizational norms, preferences, and expectations-and bureaucratic demands for efficiency-may engender an implicit organizational bias that creates barriers for culturally different groups. These biases may also hinder practice innovations, whether patient-centered, disparities-focused, or otherwise. Public Significance StatementMental health organizations hold norms and expectations regarding what an ideal client should act like and typically prefer clients who help them operate efficiently. This presents serious barriers for cultural minority clients, whose own norms and preferences often conflict with the preferential biases of mental health treatment culture.

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“If You Want to Know About the Book, Ask the Author”: Enhancing Community Engagement Through Participatory Research in Clinical Mental Health Settings

Cited by 26 publications

References 35 publications

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

A qualitative study on identity in individuals at clinical high risk for psychosis: “ … Why does it have to be one thing?”.

Implicit organizational bias: Mental health treatment culture and norms as barriers to engaging with diversity.

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