Becoming our young people’s case managers: caregivers’ experiences, needs, and ideas for improving opioid use treatments for young people using opioids

Abstract

Background Evidence continues to show that young people, ages 15-24, remain at significant risk of harms from non-medical opioid use and opioid use disorder (OUD), with experts calling for widespread implementation of developmentally-appropriate interventions. These recommendations include the involvement of caregivers in the prevention, early intervention, and treatment of young people using opioids. However, little research has investigated caregivers’ experiences supporting young people, leaving critical gaps in understanding this role. The aim of this study is to explore caregivers’ experiences accessing opioid use treatments with young people and their needs and ideas for improving such treatments. Methods This study reports qualitative findings from Phase 1 of the Improving Treatment Together project, a multi-phase, multi-site community-based participatory study broadly aimed at co-designing opioid use treatments to improve the experiences and outcomes of young people using non-medical opioids. During Phase 1, a total of 27 caregivers (parents, guardians) participated in full-day workshops that were conducted in three communities in British Columbia, Canada. Following human-centred co-design methods, caregivers engaged in small and large group discussions of their experiences, needs, and ideas for improving opioid use treatments for young people. Discussions were audio-recorded, transcribed verbatim, and thematically analysed. Results Across communities, caregivers’ main experiences were defined as ‘becoming our young people’s case managers’ and ‘enduring a never-ending rollercoaster’. To improve these experiences, two needs themes were identified – expanding organizational and system-level capacity and wider-spread understanding of opioid use as a health issue. Caregivers brainstormed a total of 378 individual ideas to meet these needs, several of which spanned multiple needs themes. Conclusions Caregivers’ experiences, needs, and ideas reveal critical opportunities for improving the quality of interventions for opioid use among young people. This study represents a substantial contribution to the design and implementation of developmentally-appropriate and family-centred interventions for young people using opioids.

From parenting skills to adolescent treatment needs: Questions elicited by parents of adolescents discharged from residential treatment

“…The fact that parents wanted information from a clinical expert and emotional support from other parents is consistent with developing literature suggesting that peers with lived experience fill a unique and valuable role within the recovery process. For example, questions on treatment are consistent with calls for peer mentorship programs for parents with lived experience supporting young people with substance use problems ( Marchand et al., 2022 ). Participants in peer support programs for families supporting adults with substance use disorders also report the value of peer support related to navigating treatment systems (i.e., treatment types, quality, and effectiveness; J. F. Kelly et al., 2017 ).…”

Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers

“…The findings from Phase 1 have been published elsewhere [ 24 , 53 , 54 ]. Briefly, Phase 1 began by developing a partnership between the Canadian Centre on Substance Use and Addiction (CCSA), a national organization providing leadership on addressing substance use related harms, and Foundry Central Office, a central hub for a provincial network of integrated youth services in BC.…”

“…Community partners, CCs, and the co-design teams were also involved in informing the implementation and evaluation of the final products in Phase 3. For a full description of the project protocol, please refer to Marchand et al, 2021 [ 54 ].…”

“The system always undermined what I was trying to do as an individual”: identifying opportunities to improve the delivery of opioid use services for youth from the perspective of service providers in four communities across British Columbia, Canada

“…Improving Treatment Together (ITT) is a multi-phase project that aims to co-design health service innovations to improve youth opioid use services through youth, caregiver, and service provider engagement using community-based participatory research (CBPR) methods. The study design has been extensively described elsewhere [ 23 , 25 , 28 ]. Briefly, the project commenced in 2018 through a partnership between a national (Canada) and provincial organization (Foundry, British Columbia; BC), who then identified four community-based partners that provide mental health and substance use services to youth.…”

“…Recently, these gaps have motivated several calls to action to improve the quality of opioid use services/ treatments for youth [13,23,[25][26][27]. Examples include expansion of youth-led and youth-dedicated programs and services, non-stigmatizing and person-first language when delivering services, and youths' self-determination in treatment decision-making [13,23,27].…”