‘It opened my eyes, my ears, and my heart’: Codesigning a substance use disorder treatment programme

Abstract

AbstractBackgroundPregnant and parenting women have low engagement and poor retention in substance use disorder (SUD) treatment. The aim of this study was to analyse the implementation of an adapted experience‐based codesign (EBCD) process involving SUD treatment staff and pregnant or parenting women with lived experience (WWLE) of SUD to launch a residential treatment service where women could coreside with their children and receive long term comprehensive treatment for dual diagnosis of SUD and mental illness.MethodsA process evaluation was conducted utilising five data sources: two sets of semistructured interviews with WWLE and SUD treatment staff, ethnographic observation and transcripts from group events, and meeting minutes. Based on the Integrated Promoting Action on Research in Health Services framework constructs (context, recipients, facilitation, innovation) researchers applied thematic analysis to determine main themes within each construct.ResultsThe full sample across the implementation totalled 34 individuals (WWLE = 13 and SUD staff = 21). The EBCD process engaged both cohorts and supported group cohesion and collaborative brainstorming. WWLE felt respected, emotionally safe to share, and empowered by participation. A cohesive, multidisciplinary codesign planning group, inclusive of WWLE, supported a more equitable codesign process. The need for a virtual platform due to the COVID‐19 pandemic impeded human connection and relationship building. The complex environment of residential regulations and uncertainties during start‐up phase of an organisation presented implementation challenges.ConclusionThese results highlight the feasibility of, and challenges to, effectively engaging WWLE in a codesign process. The findings also demonstrated a positive influence on WWLE's feelings of empowerment. Identified themes reinforce the purposeful components within EBCD that enhance participation, along with new insights to inform successful codesign with a vulnerable population. The author's team included a WWLE who collaborated throughout the full scope of the research process, enriching the overall research and ensuring the authenticity of the presentation of women in recovery's perspective. Utilising the codesign approach to design and implement new services should improve health equity by enhancing patient engagement and retention in care.Patient ContributionParenting WWLE of residential SUD treatment were involved in the full scope of the research process and the implementation being evaluated. For the actual codesign work WWLE were key members of the codesign planning team that met weekly throughout the implementation to plan, implement, problem solve and adapt the process over an 18 month timeframe. As is appropriate for codesign the actual ongoing workgroup participants had average 50% WWLE participation. For the research team, this research is a culmination of the lead author's doctoral dissertation. One member of the five‐person dissertation committee was a recovery coach and a WWLE. She was an active participant across the entire research process overseeing and influencing the research design, conduct of the study, analysis, interpretation of findings and approval of the final manuscript. The findings were member checked with the larger codesign planning group that had additional WWLE members.