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The transition to adulthood is a critical time for everyone to build independence, experience new things, and become self-sufficient. With medical advances, individuals with complex chronic conditions are surviving into adulthood. As such they withstand additional challenges during this stage of their life including; facing a discontinuity of care, loss of prior health-care networks and champions, and a shift toward increased responsibility and self-management of their conditions. Often this shift results in the need for primary care providers to act as care managers, coordinating care and supporting the young adult as they navigate adulthood. In exploring the role of primary care providers with this population we reviewed the literature to identify what strategies primary care providers can use to enhance the transition process for young adults ages 15 to 25 years with complex chronic conditions exiting pediatric services. An integrative literature review approach was used to systematically search the contemporary literature. Applying inclusion criteria and quality assessment of relevant research and gray literature we identified 12 studies that warranted detailed review and analysis. Analysis of the studies highlighted four key themes: relationships, fear and anxiety, preparedness, and communication and collaboration. It was evident that health-care transition for young adults with complex chronic conditions was complicated by their psychosocial development and extensive health and service needs. Health-care transition is a team effort influenced by local contexts, resources, and relational practices. Both groups of primary care providers and young adults must be prepared prior to transition if they are to become immersed and engaged in this work. The population of young adults with complex chronic conditions exiting pediatric care will continue to grow as access to care delivery and medical technology continue to expand. While health-care transition for this population is complicated by extensive needs and psychosocial development, primary care providers can act as key supports in employing strategies to enhance the transition process for these young adults. [ABSTRACT FROM AUTHOR]

Patient and Public Involvement and Engagement (PPIE) in research is recognised by the National Institute for Health and Care Research as crucial for high quality research with practical benefit for patients and carers. Patient and public contributors can provide both personal knowledge and lived experiences which complement the perspectives of the academic research team. Nevertheless, effective PPIE must be tailored to the nature of the research, such as the size and scope of the research, whether it is researcher-led or independently commissioned, and whether the research aims to design an intervention or evaluate it. For example, commissioned research evaluations have potential limits on how PPIE can feed into the design of the research and the intervention. Such constraints may require re-orientation of PPIE input to other functions, such as supporting wider engagement and dissemination. In this commentary, we use the 'Guidance for Reporting Involvement of Patients and the Public' (GRIPP2) short form to share our own experiences of facilitating PPIE for a large, commissioned research project evaluating the National Health Service Diabetes Prevention Programme; a behavioural intervention for adults in England who are at high risk of developing type 2 diabetes. The programme was already widely implemented in routine practice when the research project and PPIE group were established. This commentary provides us with a unique opportunity to reflect on experiences of being part of a PPIE group in the context of a longer-term evaluation of a national programme, where the scope for involvement in the intervention design was more constrained, compared to PPIE within researcher-led intervention programmes. We reflect on PPIE in the design, analysis and dissemination of the research, including lessons learned for future PPIE work in large-scale commissioned evaluations of national programmes. Important considerations for this type of PPIE work include: ensuring the role of public contributors is clarified from the outset, the complexities of facilitating PPIE over longer project timeframes, and providing adequate support to public contributors and facilitators (including training, resources and flexible timelines) to ensure an inclusive and considerate approach. These findings can inform future PPIE plans for stakeholders involved in commissioned research. Plain English Summary: This commentary uses the 'Guidance for Reporting Involvement of Patients and the Public' checklist to describe the activities and lessons learned from the work of a Patient and Public Involvement and Engagement (PPIE) group working with researchers evaluating the National Health Service (NHS) Diabetes Prevention Programme (a nine-month behavioural support programme offered to adults who are at risk of developing type 2 diabetes). The evaluation aimed to find out if the NHS Diabetes Prevention Programme was meeting its aim of reducing type 2 diabetes whilst offering value for money. The PPIE group was made up of members of the public who were either living with diabetes, at risk of diabetes, or had a family history of diabetes. Their aim was to support the work of the research team to identify research priorities, design the research, clarify the meaning of the research results, and help communicate the results to the wider public. However, given that the programme was an NHS service already being delivered in practice, there were limits to what the PPIE group could do in terms of designing the intervention. Instead, our public contributors were involved in all stages of conducting the research, with greater focus on communication of findings from the research evaluation. This report provides an opportunity to reflect on PPIE in a longer-term evaluation of a national programme and reflect on involvement in dissemination and policy impact. We hope that future evaluation programmes can learn from our experiences and optimise PPIE for similar national evaluations. [ABSTRACT FROM AUTHOR]

Participatory arts are increasingly recognised as a valuable and accessible mechanism for giving a voice to the experiences of individuals' health and healthcare. In recent years, there has been a move towards embedding participatory arts-based models into public engagement processes. Here, we contribute to the existing literature on the use of participatory arts-based approaches and their role in health research and healthcare practise, focusing on two interlinked approaches, the creation of personas and storytelling. We draw on two recent projects which have utilised these approaches to inform subsequent healthcare research and as a professional training tool to improve patient experience in a healthcare setting. We add to emerging literature to outline the benefits of these approaches in supporting research and training in healthcare settings, with a focus towards the co-produced foundations of these approaches. We demonstrate how such approaches can be utilised to capture different forms of voices, experiences and perspectives to help inform healthcare research and training, rooted in the lived experience of individuals who are directly involved in the creative process of developing personas via storytelling. These approaches challenge the listener to "walk in someone else's shoes", using their own homes and lives as a theatrical set in which to envisage someone else's story, involving the listener in the creative process through (re)imagining the stories and experiences of the characters. Greater use of immersive, co-produced participatory art-based approaches should be used in PPIE to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, via a process which is based on co-creation and co-production, reorientates the researcher-participant dynamic to fully centre those involved in the research at the heart of the tools used to guide health and healthcare research. In this way, it may also aid in trust and relationship building between institutions and communities in a way which is focused around positive, creative methods to aid health research and healthcare processes. Such approaches may help to break down barriers between academic institutions, healthcare sites and communities. Plain English summary: This article describes how storytelling and the creation of personas, as two forms of participatory arts-based approaches, may be used to inform health research and healthcare practise, including training of healthcare professionals. We draw on two recent projects which have been created with members of diverse local communities, detailing how creative methods can be used in this way. This model of creating art with communities and people with lived experience of health conditions enables ownership of these processes and encourages participants and users to 'take a walk in someone else's shoes'. We suggest that using such approaches helps to further break down barriers between academic institutions, healthcare sites and communities and may boost trust between different stakeholders. Greater use of immersive, co-created participatory arts-based approaches can be used to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, helps to shift power dynamics, and, in this way, may aid in trust and relationship building between institutions and communities in a way that encourages empathy generated from creative methods to aid health research and healthcare processes. [ABSTRACT FROM AUTHOR]

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan. [ABSTRACT FROM AUTHOR]