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Experience-based co-design (EBCD) with young people who offend: Innovating methodology to reach marginalised groups

ABSTRACT: The mental health needs of young people who offend have become more widely recognised and attempting to meet these needs is now a global priority for governments and health agencies. Young people who offend experience a range of complex difficulties and have significantly worse health and social outcomes than their mainstream counterparts. These problems usually persist and often increase in severity through adolescence and into later life. There is growing acceptance of the potential value of co-designing services that recognise and address problems to improve the outcomes of young people with mental health problems yet to date, this methodological approach remains relatively unexplored in forensic service provision. Experience-based co-design (EBCD) is an approach to healthcare improvement that enables staff and service users to jointly co-design services. Central to the approach is the idea that understanding the experiences of service users and the ‘touchpoints’ (e.g., critical points or moments) in their journey through a service are integral to service improvement. The aim of this study was to explore whether EBCD could be applied to facilitate recognition of, and service developments for, young people presenting in community forensic settings. Qualitative methods used in this study included: observational fieldwork in four police custody suites (n = 30 hours), in-depth interviews with staff in community forensic services (n = 13) and researcher staff (n = 7). In this paper, the challenges of applying EBCD in community forensic settings with this population were: working with and across agencies; gaining access to participants; understanding knowledge and power dimensions amongst participants and understanding the context. This paper argues that innovative approaches to discovering the touchpoints for young people who offend – a key component of the EBCD approach - through combining analyses of secondary data and direct observations in community forensic settings can facilitate engagement with these specialist services and so provide access to relevant information about a group (i.e., young people who offend) who may be unable to participate directly in the EBCD process.

SUBMITTER: Girling M

PROVIDER: S-EPMC9275718 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Young people (12-24?years) visit general practice but may not have a 'regular' general practitioner (GP). Whether continuity of GP care influences experiences with, and barriers to, health care among young people is unknown. This paper explores the association between having a regular GP and experience of healthcare barriers and attitudes to health system navigation among young people in New South Wales (NSW), Australia. METHODS:This study was a cross-sectional survey administered either online or face-to-face in community settings. Young people living in NSW were recruited, with oversampling of those from five socio-culturally marginalised groups (those who were Aboriginal and Torres Strait Islander, homeless, of refugee background, in rural or remote locations, sexuality and/or gender diverse). In this analysis of a larger dataset, we examined associations between having a regular GP, demographic and health status variables, barriers to health care and attitudes to health system navigation, using chi-square tests and odds ratios. Content and thematic analyses were applied to free-text responses to explore young people's views about having a regular GP. RESULTS:One thousand four hundred and sixteen young people completed the survey between 2016 and 2017. Of these, 81.1% had seen a GP in the previous 6 months and 57.8% had a regular GP. Cost was the most frequently cited barrier (45.8%) to accessing health care generally. Those with a regular GP were less likely to cite cost and other structural barriers, feeling judged, and not knowing which service to go to. Having a regular GP was associated with having more positive attitudes to health system navigation. Free-text responses provided qualitative insights, including the importance of building a relationship with one GP. CONCLUSIONS:General practice is the appropriate setting for preventive health care and care coordination. Having a regular GP is associated with fewer barriers and more positive attitudes to health system navigation and may provide better engagement with and coordination of care. Strategies are needed to increase the proportion of young people who have a regular GP.

Project description:BackgroundThere is increasing interest in digital technologies to help improve children and young people's mental health, and the evidence for the effectiveness for these approaches is rising. However, there is concern regarding levels of user engagement, uptake and adherence. Key guidance regarding digital health interventions stress the importance of early user input in the development, evaluation and implementation of technologies to help ensure they are engaging, feasible, acceptable and potentially effective. Co-design is a process of active involvement of stakeholders, requiring a change from the traditional approaches to intervention development. However, there is a lack of literature to inform the co-design of digital technologies to help child and adolescent mental health.MethodsWe reviewed the literature and practice in the co-design of digital mental health technologies with children and young people. We searched Medline, PsycInfo and Web of Science databases, guidelines, reviews and reference lists, contacted key authors for relevant studies, and extracted key themes on aspects of co-design relevant to practice. We supplemented this with case studies and methods reported by researchers working in the field.ResultsWe identified 25 original articles and 30 digital mental health technologies that were designed/developed with children and young people. The themes identified were as follows: principles of co-design (including potential stakeholders and stages of involvement), methods of involving and engaging the range of users, co-designing the prototype and the challenges of co-design.ConclusionsCo-design involves all relevant stakeholders throughout the life and research cycle of the programme. This review helps to inform practitioners and researchers interested in the development of digital health technologies for children and young people. Future work in this field will need to consider the changing face of technology, methods of engaging with the diversity in the user group, and the evaluation of the co-design process and its impact on the technology.

Project description:BACKGROUND:Marginalised groups ('populations outside of mainstream society') experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising. METHODS:Scoping review. Systematic searches were performed across six electronic databases in September 2019. The time frame for searches of the respective databases was from the year 2000 until present day. RESULTS:The searches yielded 3346 articles, and 67 articles were included. Patient safety issues were identified for fourteen different marginalised patient groups across all studies, with 69% (n =?46) of the studies focused on four patient groups: ethnic minority groups, frail elderly populations, care home residents and low socio-economic status. Twelve separate patient safety issues were classified. Just over half of the studies focused on three issues represented in the patient safety literature, and in order of frequency were: medication safety, adverse outcomes and near misses. In total, 157 individual contributing or associated factors were identified and mapped to one of seven different factor types from the Framework of Contributory Factors Influencing Clinical Practice within the London Protocol. Patient safety issues were mostly multifactorial in origin including patient factors, health provider factors and health care system factors. CONCLUSIONS:This review highlights that marginalised patient groups are vulnerable to experiencing a variety patient safety issues and points to a number of gaps. The findings indicate the need for further research to understand the intersectional nature of marginalisation and the multi-dimensional nature of patient safety issues, for groups that have been under-researched, including those with mental health problems, communication and cognitive impairments. Such understanding provides a basis for working collaboratively to co-design training, services and/or interventions designed to remove or at the very least minimise these increased risks. TRIAL REGISTRATION:Not applicable for a scoping review.

Project description:BACKGROUND:Young people commonly use social media platforms to communicate about suicide. Although research indicates that this communication may be helpful, the potential for harm still exists. To facilitate safe communication about suicide on social media, we developed the #chatsafe guidelines, which we sought to implement via a national social media campaign in Australia. Population-wide suicide prevention campaigns have been shown to improve knowledge, awareness, and attitudes toward suicide. However, suicide prevention campaigns will be ineffective if they do not reach and resonate with their target audience. Co-designing suicide prevention campaigns with young people can increase the engagement and usefulness of these youth interventions. OBJECTIVE:This study aimed to document key elements of the co-design process; to evaluate young people's experiences of the co-design process; and to capture young people's recommendations for the #chatsafe suicide prevention social media campaign. METHODS:In total, 11 co-design workshops were conducted, with a total of 134 young people aged between 17 and 25 years. The workshops employed commonly used co-design strategies; however, modifications were made to create a safe and comfortable environment, given the population and complexity and sensitivity of the subject matter. Young people's experiences of the workshops were evaluated through a short survey at the end of each workshop. Recommendations for the campaign strategy were captured through a thematic analysis of the postworkshop discussions with facilitators. RESULTS:The majority of young people reported that the workshops were both safe (116/131, 88.5%) and enjoyable (126/131, 96.2%). They reported feeling better equipped to communicate safely about suicide on the web and feeling better able to identify and support others who may be at risk of suicide. Key recommendations for the campaign strategy were that young people wanted to see bite-sized sections of the guidelines come to life via shareable content such as short videos, animations, photographs, and images. They wanted to feel visible in campaign materials and wanted all materials to be fully inclusive and linked to resources and support services. CONCLUSIONS:This is the first study internationally to co-design a suicide prevention social media campaign in partnership with young people. The study demonstrates that it is feasible to safely engage young people in co-designing a suicide prevention intervention and that this process produces recommendations, which can usefully inform suicide prevention campaigns aimed at youth. The fact that young people felt better able to safely communicate about suicide on the web as a result of participation in the study augurs well for youth engagement with the national campaign, which was rolled out across Australia. If effective, the campaign has the potential to better prepare many young people to communicate safely about suicide on the web.

Project description:BACKGROUND:Young people have unique social, emotional and developmental needs that require a welcoming and responsive health system, and policies that support their access to health care. Those who are socially or culturally marginalised may face additional challenges in navigating health care, contributing to health inequity. The aim of this study was to understand health system navigation, including the role of technology, for young people belonging to one or more marginalised groups, in order to inform youth health policy in New South Wales, Australia. METHODS:This qualitative longitudinal study involved 2-4 interviews each over 6 to 12 months with marginalised young people aged 12-24 years living in NSW. The analysis used Nvivo software and grounded theory. RESULTS:We interviewed 41 young people at baseline who were living in rural or remote areas, sexuality and/or gender diverse, refugee, homeless, and/or Aboriginal. A retention rate of over 85% was achieved. Nineteen belonged to more than one marginalised group allowing an exploration of intersectionality. General practitioners (family physicians) were the most commonly accessed service throughout the study period. Participants were ambivalent about their healthcare journeys. Qualitative analysis identified five themes: 1. Technology brings opportunities to understand, connect and engage with services 2. Healthcare journeys are shaped by decisions weighing up convenience, engagement, effectiveness and affordability. 3. Marginalised young people perceive and experience multiple forms of discrimination leading to forgone care. 4. Multiple marginalisation makes health system navigation more challenging 5. The impact of health system complexity and fragmentation may be mitigated by system knowledge and navigation support CONCLUSIONS: The compounding effects of multiple discrimination and access barriers were experienced more strongly for young people belonging to mutiple marginalised groups. We identify several areas for improving clinical practice and policy. Integrating technology and social media into processes that facilitate access and navigation, providing respectful and welcoming services that recognise diversity, improving health literacy and involving professionals in advocacy and navigation support may help to address these issues.

Project description:BackgroundAdolescence is a life stage characterized by intense development and increased vulnerability. Yet, young people rarely seek help for mental health, often due to stigma and embarrassment. Alarmingly, even those who do seek help may not be able to receive it. Interventions focused on well-being offer a protective factor against adversity. Highly effective, innovative, theoretically sound, accessible, and engaging mobile health (mHealth) interventions that can be used to look beyond mental ill-health and toward mental well-being are urgently needed.ObjectiveWe aimed to explore how young Australians conceptualize and construct recovery journeys from feeling unwell to being well in order to inform the conceptual design of a youth-led information-, resource-, and support-focused mHealth intervention.MethodsA sample of young people, grouped by age (12-15 years, 16-19 years, and 20-25 years), took part in 3 in-person participatory design workshops (per group). Young people's understanding and representation of well-being, feeling unwell, and the recovery journey were investigated using visual and linguistic data collection methods: photo elicitation and journey mapping. A social constructionist perspective was used for thematic analysis to produce a conceptual model of the recovery journey. A mobile app was co-designed and all app functions were mapped through iterative development and testing by young people and a team of psychology, research, design and information technology experts.ResultsYoung people (n=25) described a 6-stage journey with specific barriers and coping strategies. The findings, when situated within the personal recovery framework in mental health, emphasize the cyclic and iterative model of change. Through co-design, the new app-Niggle-was conceptualized as a visual representation of an amorphous problem, which can be addressed through app functions corresponding to the most helpful strategies that young people used to progress through the stages of their recovery journey.ConclusionsNiggle is available to offer support to young people for a range of problems and provides a hot link to counseling services in Australia. This paper elaborates on the process of in-depth qualitative data collection through visual, linguistic, and co-design methods. The findings of this study give insight into young people's understanding of well-being and recovery. This paper could aid the development of high-quality personalized mHealth interventions and support resources.

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Experience-based co-design (EBCD) with young people who offend: Innovating methodology to reach marginalised groups

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