Strengthening research and evaluation at the community level: A case for consideration, collaboration and care within mental health

Main Article Content

Sumedha Verma
Belinda Caldwell
Susie Hansen
Sarah Pollitt
Vicki Hams
Lauren Bruce
Jane Miskovic-Wheatley
Sarah Maguire

Abstract




Much innovation happens at the community level. Community-based services, by virtue of their setting, have proximity to consumer experiences, perspectives and needs, and often spearhead advances in community care and advocacy. Thus, leveraging local knowledges and supporting their translation across research, clinical practice and policy is integral in enabling an equitable ecosystem to enhance community wellbeing. However, research and evaluation (R&E) capacity and capability within community settings remains limited, hindering such knowledge-sharing and change. This article details a community-based participatory research (CBPR) project involving an 18-month- long partnership between academic researchers and service providers at an Australian not-for-profit eating disorders organisation to build R&E. Collaboratively, we planned, co-designed and implemented monitoring, evaluation and learning practices into service delivery. This article shares: (1) the process of academic partnership within a community mental health context; (2) critical reflections on the complexities, strengths, challenges, and opportunities of engaging in CBPR in building capability/capacity; and (3) actionable recommendations to guide future efforts. We explain the need for a systemic approach to building R&E within the community sector and provide rich examples of CBPR in practice. Our learnings hold implications for how local knowledges are created, utilised and translated, and what will help moving forward to enhance community care.




Article Details

Section

Research articles (Refereed)

References

Ágh, T., Kovács, G., Supina, D., Pawaskar, M., Herman, B. K., Vokó, Z. & Sheehan, D. V. 2016. A systematic review of the health-related quality of life and economic burdens of anorexia nervosa, bulimia nervosa, and binge eating disorder. Eating and Weight Disorders, 21, 353-364.
All-Party Parliamentary Group 2021. Breaking the Cycle: An inquiry into eating disorder research funding in the UK.
April, K., Stenersen, M. R., Deslandes, M., Ford, T. C., Gaylord, P., Patterson, J., Wilson, B. & Kaufman, J. S. 2023. "Give up your mic": Building capacity and sustainability within community-based participatory research initiatives. American Journal of Community Psychology, 72, 203-216.
Ayton, A., Ibrahim, A., Downs, J., Baker, S., Kumar, A., Virgo, H. & Breen, G. 2024. From awareness to action: an urgent call to reduce mortality and improve outcomes in eating disorders. Br J Psychiatry, 224, 3-5.
Benz, C., Scott-Jeffs, W., Mckercher, K. A., Welsh, M., Norman, R., Hendrie, D., Locantro, M. & Robinson, S. 2024. Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Research Involvement and Engagement, 10, 47.
Better Evaluation. 2021. Empowerment Evaluation [Online]. Available: https://www.betterevaluation.org/methods-approaches/approaches/empowerment-evaluation [Accessed 1 July 2024].
Brown, A., Edelman, A., Pain, T., Larkins, S. & Harvey, G. 2022. "We're Not Providing the Best Care If We Are Not on the Cutting Edge of Research": A Research Impact Evaluation at a Regional Australian Hospital and Health Service. International journal of health policy and management, 11, 3000-3011.
Bryant, E., Koemel, N., Martenstyn, J. A., Marks, P., Hickie, I. & Maguire, S. 2023. Mortality and mental health funding-do the dollars add up? Eating disorder research funding in Australia from 2009 to 2021: a portfolio analysis. The Lancet Regional Health – Western Pacific, 37.
Butterfly Foundation 2024. Paying the Price.
Centers for Disease Control and Prevention 1999. Framework for Program Evaluation in Public Health.
Clark, M. T. R., Manuel, J., Lacey, C., Pitama, S., Cunningham, R. & Jordan, J. 2023. Reimagining eating disorder spaces: a qualitative study exploring Māori experiences of accessing treatment for eating disorders in Aotearoa New Zealand. Journal of Eating Disorders, 11, 22-22.
Davies, R. 2013. Planning Evaluability Assessments. Department for International Development.
Eating Disorders Victoria 2023. Lived Experience and Peer Work Position Paper. Abbotsford, Victoria.
El-Murr, A. 2021. Building a positive evaluation culture Australian Institute of Family Studies.
Emmons, K. M., Curry, M., Lee, R. M., Pless, A., Ramanadhan, S. & Trujillo, C. 2022. Enabling community input to improve equity in and access to translational research: The Community Coalition for Equity in Research. Journal of Clinical and Translational Science, 6, e60.
Farmer, E. A. & Weston, K. M. 2002. A conceptual model for capacity building in Australian primary health care research. Australian Family Physician, 31 12, 1139-42.
Farrar-Rabbidge, M. & Squire, S. 2022. Eating disorders and stigma. Butterfly Foundation.
Fletcher, L., Trip, H., Lawson, R., Wilson, N. & Jordan, J. 2021. Life is different now - impacts of eating disorders on Carers in New Zealand: a qualitative study. Journal of Eating Disorders, 9, 91.
Golenko, X., Pager, S. & Holden, L. 2012. A thematic analysis of the role of the organisation in building allied health research capacity: a senior managers’ perspective. BMC Health Services Research, 12, 276.
Guijt, I. M. 2014. Participatory Approaches. Methodological Briefs: Impact Evaluation 5. Florence, Italy: UNICEF Office of Research.
Halbeisen, G., Brandt, G. & Paslakis, G. 2022. A Plea for Diversity in Eating Disorders Research. Frontiers in Psychiatry, 13, 820043.
Hay, P., Aouad, P., Le, A., Marks, P., Maloney, D., Touyz, S. & Maguire, S. 2023. Epidemiology of eating disorders: population, prevalence, disease burden and quality of life informing public policy in Australia-a rapid review. Journal of Eating Disorders, 11, 23.
Holden, L., Pager, S., Golenko, X. & Ware, R. S. 2012. Validation of the research capacity and culture (RCC) tool: measuring RCC at individual, team and organisation levels. Aust J Prim Health, 18, 62-7.
Holmes, A. G. D. 2020. Researcher Positionality - A Consideration of Its Influence and Place in Qualitative Research - A New Researcher Guide. Shanlax International Journal of Education 8, 1-10.
Insideout Institute 2021. Australian Eating Disorders Research & Translation Strategy 2021-2031. Sydney, Australia: University of Sydney.
Israel, B. A., Eng, E., Parker, E. A. & Schulz, A. J. 2012. Methods for Community-Based Participatory Research for Health, Newark, Newark: Jossey-Bass.
Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J., Iii, Guzman, J. R. & Lichtenstein, R. 2018. Critical Issues in Developing and Following CBPR Principles. In: DURAN, B., WALLERSTEIN, N., OETZEL, J. G. & MINKLER, M. (eds.) Community-Based Participatory Research for Health: Advancing Social and Health Equity Third edition ed. Hoboken, NJ: Jossey-Bass and Pfeiffer Imprints, Wiley.
Johns, G., Taylor, B., John, A. & Tan, J. 2019. Current eating disorder healthcare services - the perspectives and experiences of individuals with eating disorders, their families and health professionals: systematic review and thematic synthesis. BJPsych Open, 5, e59.
Jones, N., Atterbury, K., Byrne, L., Carras, M., Brown, M. & Phalen, P. 2021. Lived Experience, Research Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline. Psychiatric Services, 72, 591-593.
Jull, J., Giles, A. & Graham, I. D. 2017. Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implementation Science, 12, 150.
Karlstad, J., Moe, C. F., Adelsten Stokland, R. & Brinchmann, B. S. 2022. "Balancing within a closed family system": a grounded theory study of how family life is affected by having a family member with an eating disorder. Journal of Eating Disorders, 10, 147.
Kent, B. A., Holman, C., Amoako, E., Antonietti, A., Azam, J. M., Ballhausen, H., Bediako, Y., Belasen, A. M., Carneiro, C. F. D., Chen, Y. C., Compeer, E. B., Connor, C. a. C., Crüwell, S., Debat, H., Dorris, E., Ebrahimi, H., Erlich, J. C., Fernández-Chiappe, F., Fischer, F., Gazda, M. A., Glatz, T., Grabitz, P., Heise, V., Kent, D. G., Lo, H., Mcdowell, G., Mehta, D., Neumann, W. J., Neves, K., Patterson, M., Penfold, N. C., Piper, S. K., Puebla, I., Quashie, P. K., Quezada, C. P., Riley, J. L., Rohmann, J. L., Saladi, S., Schwessinger, B., Siegerink, B., Stehlik, P., Tzilivaki, A., Umbers, K. D. L., Varma, A., Walavalkar, K., De Winde, C. M., Zaza, C. & Weissgerber, T. L. 2022. Recommendations for empowering early career researchers to improve research culture and practice. PLoS Biol, 20, e3001680.
Lewis, H. K. & Foye, U. 2021. From prevention to peer support: a systematic review exploring the involvement of lived-experience in eating disorder interventions. Mental Health Review Journal, 27, 1-17.
Lloyd, N., Kenny, A. & Hyett, N. 2021. Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review. BMC health services research, 21, 364-364.
Miskovic-Wheatley, J., Bryant, E., Ong, S. H., Vatter, S., Le, A., Aouad, P., Barakat, S., Boakes, R., Brennan, L., Bryant, E., Byrne, S., Caldwell, B., Calvert, S., Carroll, B., Castle, D., Caterson, I., Chelius, B., Chiem, L., Clarke, S., Conti, J., Crouch, L., Dammery, G., Dzajkovski, N., Fardouly, J., Felicia, C., Feneley, J., Firriolo, A.-M., Foroughi, N., Fuller-Tyszkiewicz, M., Fursland, A., Gonzalez-Arce, V., Gouldthorp, B., Griffin, K., Griffiths, S., Hambleton, A., Hannigan, A., Hart, M., Hart, S., Hay, P., Hickie, I., Kay-Lambkin, F., King, R., Kohn, M., Koreshe, E., Krug, I., Linardon, J., Long, R., Long, A., Madden, S., Maguire, S., Maloney, D., Marks, P., Mclean, S., Meddick, T., Miskovic-Wheatley, J., Mitchison, D., O’kearney, R., Ong, S. H., Paterson, R., Paxton, S., Pehlivan, M., Pepin, G., Phillipou, A., Piccone, J., Pinkus, R., Raykos, B., Rhodes, P., Rieger, E., Rodan, S.-C., Rockett, K., Russell, J., Russell, H., Salter, F., Sawyer, S., Shelton, B., Singh, U., Smith, S., Smith, E., Spielman, K., Squire, S., Thomson, J., Touyz, S., Utpala, R., Vartanian, L., Vatter, S., Wallis, A., Ward, W., Wells, S., Wertheim, E., Wilksch, S., Williams, M., Touyz, S., Maguire, S. & National Eating Disorder Research, C. 2023. Eating disorder outcomes: findings from a rapid review of over a decade of research. Journal of Eating Disorders, 11, 85.
Mooney, R., Dempsey, C., Brown, B. J., Keating, F., Joseph, D. & Bhui, K. 2023. Using participatory action research methods to address epistemic injustice within mental health research and the mental health system. Frontiers in Public Health, 11, 1075363-1075363.
Munshi, M., Louskieter, L. & Radebe, K. 2020. Decentering power in Health Policy and Systems Research: theorising from the margins [Online]. Available: https://www.internationalhealthpolicies.org/featured-article/decentering-power-in-health-policy-and-systems-research-theorising-from-the-margins/ [Accessed 3 July 2024].
Musić, S., Elwyn, R., Fountas, G., Gnatt, I., Jenkins, Z. M., Malcolm, A., Miles, S., Neill, E., Simpson, T., Yolland, C. O. B. & Phillipou, A. 2021. Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations. Australian & New Zealand Journal of Psychiatry, 56, 216-218.
National Eating Disorders Collaboration 2019. Peer Work Guide.
National Eating Disorders Collaboration 2023. National Eating Disorders Strategy 2023-2033.
New South Wales Treasury 2013. Policy and Guidelines: Evaluation.
Powell, J. A. & Menendian, S. 2024. The Practice of Bridging [Online]. Othering & Belonging Institute Available: https://belonging.berkeley.edu/practice-bridging [Accessed 3 July 2024].
Raspovic, A., Duck, R., Synnot, A., Caldwell, B., Phillipou, A., Castle, D., Newton, R., Brennan, L., Jenkins, Z., Cunich, M., Maguire, S. & Miskovic-Wheatley, J. 2024. A peer mentoring program for eating disorders: improved symptomatology and reduced hospital admissions, three years and a pandemic on. Journal of Eating Disorders, 12, 99.
Reed, R. 2015. Program evaluation as community-engaged research: Challenges and solutions. Gateways: International Journal of Community Research and Engagement, 8, 118-138.
Robinson, T., Bailey, C., Morris, H., Burns, P., Melder, A., Croft, C., Spyridonidis, D., Bismantara, H., Skouteris, H. & Teede, H. 2020. Bridging the research–practice gap in healthcare: a rapid review of research translation centres in England and Australia. Health Research Policy and Systems, 18, 117.
Sadler, L. S., Larson, J., Bouregy, S., Lapaglia, D., Bridger, L., Mccaslin, C. & Rockwell, S. 2012. Community–University Partnerships in Community-Based Research. Progress in Community Health Partnerships, 6, 463-469.
Sanchez, A. L., Cliggitt, L. P., Dallard, N. L., Irby, D., Harper, M., Schaffer, E., Lane-Fall, M. & Beidas, R. S. 2023. Power Redistribution and Upending White Supremacy in Implementation Research and Practice in Community Mental Health. Psychiatric Services, 74, 987-990.
Singleton, G. E. & Comer, J. P. 2013. More courageous conversations about race, Thousand Oaks, California, Corwin Press.
State of Victoria 2023. Victorian eating disorders strategy: What we heard report. Melbourne, Victoria.
Stewart, J. 2014. Developing a culture of evaluation and research. Child Family Community Australia.
Utpala, R., Squire, S. & Farrar-Rabbidge, M. 2023. Eating Disorders Peer Workforce Guidelines. Sydney, Australia: Butterfly Foundation.
Wallerstein, N. B. & Duran, B. 2006. Using community-based participatory research to address health disparities. Health Promotion Practice, 7, 312-23.
Wilson, E. 2019. Community-Based Participatory Action Research. In: LIAMPUTTONG, P. (ed.) Handbook of Research Methods in Health Social Sciences. Singapore: Springer Singapore.