Young people who offend and mental health : co-design 'Across the Line'

PhD ThesisThe mental health needs of young people who offend have become more widely recognised and a priority for the government 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 that persist and often increase in severity through childhood and later life. A wealth of research has been undertaken that focuses on young people’s health and well-being in the secure estate (e.g. custody) however, there is less research exploring the mental health experiences of young people who offend in community forensic settings. There is growing acceptance of the potential value of co-designing services that recognise and address problems to improve the outcomes of this population group yet to date, this remains relatively unexplored. The aim of this research was to explore, using qualitative research methodologies, (1) how young people presenting to youth justice services describe and understand their own mental health and needs, and (2) how a novel research approach (Experience-Based Co-Design (EBCD)) could be applied to facilitate recognition and service developments for young people with mental health difficulties presenting in community forensic settings. A qualitative systematic review and meta-ethnography of the research literature on how young people in contact with the youth justice system (YJS) experience mental health problems was undertaken. Fourteen studies were included in the review which represented 278 study participants in total, aged between 13-39 years (to capture retrospective accounts of offending behaviour). Included studies were conducted across a range of countries with different legal jurisdictions (six in the USA, five in the UK, one in Sweden, one in the Netherlands and one in New Zealand). The review aimed to explore how young people who offend talk about and describe their experiences of mental health; their beliefs and perceptions about mental health and well-being; what it means to be susceptible to mental health problems; and the kinds of language they use to describe this. The key findings were that: (1) some young people lacked the ability to understand their own and others’ mental health difficulties; (2) some young people were able to reflect on their experiences, and in some cases, they were able to develop ways of coping with their adverse circumstances, and (3) some young people indicated what does and does not work in their experiences of professional support. This review identified that better understanding is needed about the ways in which young people develop and show resilience to adverse circumstances and how they perceive their own situation, in order to develop services that are more appropriate to their needs. The review also identified that developing innovative ways to include young people in research and practice must consider the communication difficulties that young people who offend often experience. The evidence from this review contributed to the development of the primary qualitative study in this thesis. This qualitative study was designed and undertaken using a modified experience-based co-design (EBCD) approach. 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 experiences held by service users and ‘touchpoints’ (e.g. critical points or moments) in their journey through a service are integral to service improvement. Qualitative methods used within this EBCD approach included: observational fieldwork in four police custody suites (n=30 hours); in-depth interviews with staff in community forensic services (n=13) and an interview sub-study of researcher perspectives (n=7). Significant challenges experienced in the recruitment of young people who offend into this primary qualitative study required revising the research plan. This revised plan included adopting a modified approach in the development of young peoples’ touchpoints and the inclusion of a qualitative interview sub-study of researcher perspectives to critically reflect on the EBCD research process itself. The findings from this primary qualitative study have demonstrated: (1) some of the challenges of working in the police custody environment and pressures on the services to deal with mental health issues; (2) the difficulties of working in community forensic services with young people who offend and who often have complex and unmet needs (e.g. lack of staff training and support, lack of smooth pathways to mental health services and difficulties engaging with young people and families); (3) a modified approach to including the experiences (i.e. touchpoints) of young people who offend can be useful and is feasible in gathering their experiences of youth justice services; and (4) the shared experiences of challenges faced by research staff applying the EBCD approach in similar studies with similar population groups. Findings presented in this thesis have contributed knowledge to an existing small body of evidence about how young people who offend experience and understand their mental health and towards the feasibility of applying the EBCD approach in community forensic services with this population group. Specifically, the findings suggest: allowing greater youth participation through re-framing assumptions about how young people experience their own mental health; developing capacity in community forensic services to facilitate joint working; increasing flexibility in and between services to promote service developments; and further modifying EBCD for disadvantaged and/or vulnerable groups.National Institute for Health Research (NIHR

Improving the normalization of complex interventions: part 1 - development of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT)

Background Understanding and measuring implementation processes is a key challenge for implementation researchers. This study draws on Normalization Process Theory (NPT) to develop an instrument that can be applied to assess, monitor or measure factors likely to affect normalization from the perspective of implementation participants. Methods An iterative process of instrument development was undertaken using the following methods: theoretical elaboration, item generation and item reduction (team workshops); item appraisal (QAS-99); cognitive testing with complex intervention teams; theory re-validation with NPT experts; and pilot testing of instrument. Results We initially generated 112 potential questionnaire items; these were then reduced to 47 through team workshops and item appraisal. No concerns about item wording and construction were raised through the item appraisal process. We undertook three rounds of cognitive interviews with professionals (n = 30) involved in the development, evaluation, delivery or reception of complex interventions. We identified minor issues around wording of some items; universal issues around how to engage with people at different time points in an intervention; and conceptual issues around the types of people for whom the instrument should be designed. We managed these by adding extra items (n = 6) and including a new set of option responses: ‘not relevant at this stage’, ‘not relevant to my role’ and ‘not relevant to this intervention’ and decided to design an instrument explicitly for those people either delivering or receiving an intervention. This version of the instrument had 53 items. Twenty-three people with a good working knowledge of NPT reviewed the items for theoretical drift. Items that displayed a poor alignment with NPT sub-constructs were removed (n = 8) and others revised or combined (n = 6). The final instrument, with 43 items, was successfully piloted with five people, with a 100% completion rate of items. Conclusion The process of moving through cycles of theoretical translation, item generation, cognitive testing, and theoretical (re)validation was essential for maintaining a balance between the theoretical integrity of the NPT concepts and the ease with which intended respondents could answer the questions. The final instrument could be easily understood and completed, while retaining theoretical validity. NoMAD represents a measure that can be used to understand implementation participants’ experiences. It is intended as a measure that can be used alongside instruments that measure other dimensions of implementation activity, such as implementation fidelity, adoption, and readiness

Translational framework for implementation evaluation and research: Protocol for a qualitative systematic review of studies informed by Normalization Process Theory (NPT)

Background: Normalization Process Theory (NPT) identifies mechanisms that have been demonstrated to play an important role in implementation processes. It is now widely used to inform feasibility, process evaluation, and implementation studies in healthcare and other areas of work. This qualitative synthesis of NPT studies aims to better understand how NPT explains observed and reported implementation processes, and to explore the ways in which its constructs explain the implementability, enacting and sustainment of complex healthcare interventions. Methods: We will systematically search Scopus, PubMed and Web of Science databases and use the Google Scholar search engine for citations of key papers in which NPT was developed.  This will identify English language peer-reviewed articles in scientific journals reporting (a) primary qualitative or mixed methods studies; or, (b) qualitative or mixed methods evidence syntheses in which NPT was the primary analytic framework. Studies may be conducted in any healthcare setting, published between June 2006 and 31 December 2021. We will perform a qualitative synthesis of included studies using two parallel methods: (i) directed content analysis based on an already developed coding manual; and (ii) unsupervised textual analysis using Leximancer® topic modelling software. Other: We will disseminate results of the review using peer reviewed publications, conference and seminar presentations, and social media (Facebook and Twitter) channels. The primary source of funding is the National Institute for Health Research ARC North Thames. No human subjects or personal data are involved and no ethical issues are anticipated

Improving the normalization of complex interventions : part 2 - validation of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT)

Funding This study is funded by the Economic and Social Research Council Study [Grant Number RES-062-23-3274] which is gratefully acknowledged. This work was also partially supported by funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733025, ImpleMentAll project. This content reflects only the author’s view and the European Commission is not responsible for any use that may be made of the information it contains.The Health Services Research Unit, University of Aberdeen, receives core funding from the Chief Scientist Office of the Scottish Government Health Directorates. CRV was funded by a Clinician Scientist award supported by the National Institute for Health Research during this independent research. Availability of data and materials The datasets generated and/or analysed during the current study are deposited on UK Datashare (record 852,387). Further information is available from the corresponding author on reasonable request.Peer reviewedPublisher PD

Using Normalization Process Theory in feasibility studies and process evaluations of complex healthcare interventions: a systematic review.

BACKGROUND: Normalization Process Theory (NPT) identifies, characterises and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies and other complex interventions. A large body of literature that employs NPT to inform feasibility studies and process evaluations of complex healthcare interventions has now emerged. The aims of this review were to review this literature; to identify and characterise the uses and limits of NPT in research on the implementation and integration of healthcare interventions; and to explore NPT's contribution to understanding the dynamics of these processes. METHODS: A qualitative systematic review was conducted. We searched Web of Science, Scopus and Google Scholar for articles with empirical data in peer-reviewed journals that cited either key papers presenting and developing NPT, or the NPT Online Toolkit ( www.normalizationprocess.org ). We included in the review only articles that used NPT as the primary approach to collection, analysis or reporting of data in studies of the implementation of healthcare techniques, technologies or other interventions. A structured data extraction instrument was used, and data were analysed qualitatively. RESULTS: Searches revealed 3322 citations. We show that after eliminating 2337 duplicates and broken or junk URLs, 985 were screened as titles and abstracts. Of these, 101 were excluded because they did not fit the inclusion criteria for the review. This left 884 articles for full-text screening. Of these, 754 did not fit the inclusion criteria for the review. This left 130 papers presenting results from 108 identifiable studies to be included in the review. NPT appears to provide researchers and practitioners with a conceptual vocabulary for rigorous studies of implementation processes. It identifies, characterises and explains empirically identifiable mechanisms that motivate and shape implementation processes. Taken together, these mean that analyses using NPT can effectively assist in the explanation of the success or failure of specific implementation projects. Ten percent of papers included critiques of some aspect of NPT, with those that did mainly focusing on its terminology. However, two studies critiqued NPT emphasis on agency, and one study critiqued NPT for its normative focus. CONCLUSIONS: This review demonstrates that researchers found NPT useful and applied it across a wide range of interventions. It has been effectively used to aid intervention development and implementation planning as well as evaluating and understanding implementation processes themselves. In particular, NPT appears to have offered a valuable set of conceptual tools to aid understanding of implementation as a dynamic process

Towards an Implementation-STakeholder Engagement Model (I-STEM) for improving health and social care services

BACKGROUND: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation-STakeholder Engagement Model (I-STEM) in the context of an international, large-scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I-STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. METHODS: In-depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet-based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first- and third-generation Grounded Theory, including constant comparative method. RESULTS: We conducted 55 interviews and observed 19 implementation-related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I-STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. CONCLUSION: The I-STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I-STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. PATIENT OR PUBLIC CONTRIBUTION: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN-Europe at all stages-from grant development to dissemination. GAMIAN-Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN-Europe was involved in pilot testing the ItFits-toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits-toolkit. TRIAL REGISTRATION: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018

Improving the normalization of complex interventions: measure development based on normalization process theory (NoMAD): study protocol

<b>Background</b> Understanding implementation processes is key to ensuring that complex interventions in healthcare are taken up in practice and thus maximize intended benefits for service provision and (ultimately) care to patients. Normalization Process Theory (NPT) provides a framework for understanding how a new intervention becomes part of normal practice. This study aims to develop and validate simple generic tools derived from NPT, to be used to improve the implementation of complex healthcare interventions.<p></p> <b>Objectives</b> The objectives of this study are to: develop a set of NPT-based measures and formatively evaluate their use for identifying implementation problems and monitoring progress; conduct preliminary evaluation of these measures across a range of interventions and contexts, and identify factors that affect this process; explore the utility of these measures for predicting outcomes; and develop an online users’ manual for the measures.<p></p> <b>Methods</b> A combination of qualitative (workshops, item development, user feedback, cognitive interviews) and quantitative (survey) methods will be used to develop NPT measures, and test the utility of the measures in six healthcare intervention settings.<p></p> <b>Discussion</b> The measures developed in the study will be available for use by those involved in planning, implementing, and evaluating complex interventions in healthcare and have the potential to enhance the chances of their implementation, leading to sustained changes in working practices

Translational framework for implementation evaluation and research: Protocol for a qualitative systematic review of studies informed by Normalization Process Theory (NPT) [version 1; peer review: 2 approved]

Background: Normalization Process Theory (NPT) identifies mechanisms that have been demonstrated to play an important role in implementation processes. It is now widely used to inform feasibility, process evaluation, and implementation studies in healthcare and other areas of work. This qualitative synthesis of NPT studies aims to better understand how NPT explains observed and reported implementation processes, and to explore the ways in which its constructs explain the implementability, enacting and sustainment of complex healthcare interventions. Methods: We will systematically search Scopus, PubMed and Web of Science databases and use the Google Scholar search engine for citations of key papers in which NPT was developed.  This will identify English language peer-reviewed articles in scientific journals reporting (a) primary qualitative or mixed methods studies; or, (b) qualitative or mixed methods evidence syntheses in which NPT was the primary analytic framework. Studies may be conducted in any healthcare setting, published between June 2006 and 31 December 2021. We will perform a qualitative synthesis of included studies using two parallel methods: (i) directed content analysis based on an already developed coding manual; and (ii) unsupervised textual analysis using Leximancer® topic modelling software. Other: We will disseminate results of the review using peer reviewed publications, conference and seminar presentations, and social media (Facebook and Twitter) channels. The primary source of funding is the National Institute for Health Research ARC North Thames. No human subjects or personal data are involved and no ethical issues are anticipated

Lessons from implementing the Australian National Action Plan for Endometriosis

Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted ‘gold-standard’ surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs

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

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