The Participatory Science Initiative (PSI) is a translational research initiative (Woolf, 2011), developing scientific knowledge (theories, intervention models) better matched to the cultural strengths and specific needs of low-income youth of color, and also benefiting from youths’ perspectives to improve how scientific knowledge is applied on the ground in youths’ communities. In the U.S., low-income youth of color are the sub-group of the U.S. population that is most stressed by poverty, racism and community violence traumas. The PSI draws from participatory models of scientific knowledge generation carried out in many fields, including citizen science in environmental science (https://www.epa.gov/participatory-science), the Public Science Project in social psychology (https://publicscienceproject.org/), and the engagement of public welfare clients as experts about the quality of services they receive (Krumer-Nevo & Barak, 2006). Increasingly, consumer evaluation and participatory methods are used to democratize social work and social welfare practices (Uggerhoj, 2014), to improve social policies for persons in need of social safety net resources (Krumer Nevo & Barak, 2006), and to understand specific interstices of injustices and co-formulate remedies (Fine, 2012).  Participatory methods are vital for catalyzing an effective racial reckoning in U.S. social sciences (Collins & Bilge, 2016).

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The ECP’s PSI engages youth and marginalized persons in designing and evaluating interventions, seeking to tell the “inside story,” as youth put it, from within communities, about:

• youths’ experiences of helpful and unhelpful aspects of social interventions

• to pinpoint and remedy social safety net failures and

• strategies for youth and community uplift.

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However, telling the “inside story” from clients’ perspectives can be challenging. Services with youth in highly stressed communities of color are scarce (Bringewatt & Gershoff, 2010) and even when present, youth in need of mental health care are less likely to receive it if they are low-income persons of color by comparison with more privileged groups (Fitts, Aber & Allen, 2019). Engaging youth and their families in intervention research can be a major obstacle (Kazdin, 2004; attrition was 50% in Heller et al., 2013). Adults in marginalized communities often see researchers profiting from research without benefiting communities (Smith, 2012) and refuse to participate. Measures of constructs associated with program effectiveness lack cultural relevance if derived from privileged white samples (Danziger, 2007) and omit complexities of the client-practitioner relationship (Sherwood, 2019). Community leaders’ interventions may not be included in evidence-based models often required for program funding. An example is the leaders of social service organizations in high-poverty urban communities who stand on street corners when community violence is anticipated, knowing they can defuse conflict because youth have trusted them since childhood.

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Another reason the “inside story” is not sufficiently known may be that scientific standards tend to require a univocal and monadic perspective -- only the scholar’s voice (Collins, 1990; Gergen, 1985). However, the community-based services and research environment is multi-vocal: youth participants, community partners, service providers, families, and school staff all have unique perspectives on services which are communicated through multi-layered, plentiful conversations. Scholars often have to quiet those conversations and de-center youths’ voices. Accordingly, there is a need for intervention designs and evaluations that reflect multi-vocal, relational contexts, center youths’ priorities, and improve rigor via fidelity to diverse perspectives. The community-based, participatory action approach shows considerable promise as an alternative to top-down approaches, for developing interventions centering community members’ expertise and voices (Collins & Bilge, 2016; Fine, 2012; Sanchez et al., 2021), and was the approach used in SLIY.

The PSI aims to support organizational capacity of schools and social service agencies in low-income communities, which often are overwhelmed with needs and understaffed. Having found that often youth with learning and other disabilities are especially vulnerable in low-income communities of color, the ECP-PSI also serves youth with disabilities using a supported decision-making approach. Whereas the predominant medical models of disability have led to treating persons with disabilities as though they are chronically ill and incapable of making decisions about their own well-being and futures. By contrast, the social model of disability increasingly recommended and adopted under the U.N. Convention for the Human Rights of Persons (UNCHRPD) with disabilities understands that major obstacles faced by persons with disabilities are caused by the social construction of disability, that is, social prejudices, misunderstandings, and legislation and practices that obstruct persons’ self-determination (Arstein-Kerslake et al., 2017; Degener, 2016). The Supported Decision-making model being developed both in the US and internationally, and supported by the UNCHRPD, addresses these needs. More participatory research with persons with disabilities and practice and policy development stemming from that research is needed, especially in the U.S. which is the only country on the planet that has not ratified the UNCHRPD.

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The PSI is the ECP’s contribution to advancing scientific and practically applicable methods for improving interventions, policies, and social justice for persons experiencing marginalization on the basis of race, class, and disability.

 

References

 

Arstein-Kerslake, A., Watson, J. Browning, M., Martinis,. J.,  Blanck, P. (2017). Future Directions in Supported Decision-Making, Disability Studies Quarterly, 37 (1), https://dsq-sds.org/article/view/5070.

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Bringewatt, E. H. & E. T. Gershoff (2010). Falling through the cracks. Children and Youth Services Review, 32(10): 1291-1299.  10.1016/j.childyouth.2010.04.021.

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Collins, P. H. (1990). Black feminist thought. New York, Routledge.

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Collins, P. H. & S. Bilge (2016). Intersectionality. New York, Polity Press.

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Danziger, K. (2007). The holy grail of universality. In T. Teo (Ed.). Varieties of Theoretical Psychology.  Toronto, Captus Press.

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Degener, T. (2016). Disability in a Human Rights Context. Laws 2016, 5, 35. doi:10.3390/laws5030035.

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Fine, M. (2012). Resuscitating critical psychology for revolting times. Journal of Social Issues, 68(2): 416-438. 0

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Fitts, J. J., M. S. Aber and N. E. Allen (2019). Individual, Family, and Site Predictors of Youth Receipt of Therapy in Systems of Care. Child & Youth Care Forum 48(5): 737-755. 10.1007/s10566-019-09504-w.

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Gergen, K. (1985). The social constructionist movement in modern psychology. American Psychologist, 40: 266-275.

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Gudelyte, U., J. Ruskus and K. Tyson McCrea (in progress). "“Help me to decide”: Developing  human rights-based social services for persons with disabilities through supported decision-making."

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Heller, S., H. Pollack, R. Ander & J. Ludwig (2013, May). Preventing youth violence and dropout: A randomized field experiment. Working Paper 19014. Cambridge, MA, National Bureau of Economic Research. https://www.nber.org/papers/w19014.pdf.

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Krumer-Nevo, M. and A. Barak (2006). Service users' perspectives on the benefits system in Israel: A participatory action research. Social Policy and Administration 40(7): 774-790.

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Morsy, L. and R. Rothstein (2019). Toxic stress and children’s outcomes. Washington, DC, Economic Policy Institute.At: epi.org/164823.

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Sanchez, V., S. Sanchez-Youngman, E. Dickson, E. Burgess, E. Haozous, E. Trickett, E. Baker and N.

Wallerstein (2021). CBPR Implementation Framework for Community-Academic Partnerships. Am J Community Psychol. 10.1002/ajcp.12506.

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Sherwood, V. R. (2019). Does evidence-based treatment exist in the mental health disciplines? J. Theoret. and Philosoph. Psych., 39(4): 239-253.  10.1037/teo0000106.

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Smith, L. T. (2012). Decolonizing methodologies: Research and indigenous peoples, second edition. London, Zed Books.

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Uggerhøj, L. (2014). Participation or marginalization: How different perspectives lead towards a democratic direction. In A.-L. Matthies and L. Uggerhoj (Eds.). Participation, Marginalization and Welfare Services - Concepts, Politics and Practices Across European Countries. London, Ashgate.

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Woolf, S. (2008). The meaning of translational research and why it matters. Journal of the American Academy of Medicine 299(2): 211 ff.