Search

This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]

Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please' and (4) 'here's a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality. Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence. [ABSTRACT FROM AUTHOR]

Peer research has the potential to empower young people to participate in research by minimising power imbalances between researchers and participants; this may reduce bias and promote improved understanding to inform policy and practice. However, these benefits are not automatic; the relative inexperience of peer researchers adds layers of complexity to the research process. Moreover, the validity of findings from research adopting less traditional methods may be questioned and policy makers may be cautious about accepting this evidence, thus limiting its contribution and impact. This paper explores the advancement of participatory peer researcher methodology in research with children in and leaving care and ethical, practical and data quality issues that arose in two studies exploring young people’s transitions from care to adulthood. It concludes that the peer research methodology can yield rich data but that adequate resources and effective research management are crucial. The authors also caution against a reductionist approach that privileges peer research methodology above other methods of inquiry in the study of transitions from care to adulthood. [ABSTRACT FROM AUTHOR]

Definitions of neighbourhood in the Social Sciences are complex, varying in their characteristics (for example, perceived boundaries and content) and between residents of that neighbourhood (for example, by class and ethnicity). This study employs an under-utilised methodology offering strong potential for overcoming some of the difficulties associated with neighbourhood definitions. A mental mapping exercise involving local residents is showcased for an ethnically diverse working-class neighbourhood in south Liverpool. The results demonstrate distinctions between residents in the geographical demarcation of the area and the features included, with important implications for how neighbourhood is best measured and understood. We suggest that one size does not fit all in definitions of neighbourhood, and that mental mapping should form a more common part of a neighbourhood researcher's toolkit. [ABSTRACT FROM AUTHOR]

Objectives: A participatory qualitative study exploring women's experiences of ageing with HIV in London, United Kingdom. The research considered how the concept of 'community' was relevant to women's experiences and what constructions of 'community' could be discerned in the experiences, accounts given and discourses employed by older women living with HIV. Methods: The research presented in this article was conducted as a PhD study between 2015 and 2019. The study was structured in multiple and overlapping phases, and adopted a feminist and participatory approach. The methods used in the research were as follows: participatory literature review, participatory creative workshops, policy review and stakeholder interviews, life story interviews, and a participatory analysis workshop. Results: Eighteen women living with HIV aged over 50 participated in creative workshops and fourteen women in life story interviews. Women's experiences of ageing with HIV are shaped by intersecting identities, community responses, and personal connections. Ageing with HIV brings challenges, added to and augmented by other difficulties women face in their lives, but women draw on individual and community assets in order to adapt, cope and thrive. Belonging to a community of women living with HIV and a broader community of people living with HIV created a vital space of safety, in which women found support, advice, and meaning. Conclusions: Women ageing with HIV countered the 'violence of invisibility' through forming community with other women living with HIV, rejecting stigma, and enacting a personal form of advocacy through care for others. [ABSTRACT FROM AUTHOR]

Introduction: Placements are considered vital in promoting theory-to-practice learning. With role-emerging placements increasingly being offered, the learning processes experienced by students warrants further investigation. This research explored the learning experiences of students, from both supervisor and student perspectives, over the duration of a role-emerging placement in schools, to contribute to our understanding of this important student learning process. Method: Action research was used across four cycles with 14 students and 11 supervisors. Data were collected through reflective field notes, placement documentation and semi-structured interviews. Findings were analysed using template analysis. Findings: Limited established occupational therapy procedures and role models meant that the students created and used knowledge differently from role-established placements. The procedural knowledge upon which students most heavily relied in previous placements was largely inaccessible to students. Students relied on occupational therapy conceptual and dispositional knowledge, with the support of their peer and supervisor to guide practice. Tensions were seen between providing a service for the school and taking the necessary time to understand and implement the occupational therapy process systematically. Conclusion: Role-emerging placements are valuable for transformational student learning. These placements do, however, present challenges that require careful negotiation and structured guidance. [ABSTRACT FROM AUTHOR]