‘I felt part of the solution’. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain

ObjectivesTo elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research.Designreflexive thematic analysis from a critical realist perspective.MethodsOnline interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively.ResultsThe relationship between patient advocates and the organisations they help is conceptualised as ‘an unequal partnership’. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions).ConclusionPeople with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development

Confidence of practitioners to support self-management of pain: A multidisciplinary survey

Supplementary Material is available online at: https://journals.sagepub.com/doi/full/10.1177/20494637231212748#supplementary-materials .Copyright © The Author(s) 2023. Background Supported self-management is an important component of management for persistent pain according to current recommendations and guidelines. However, it is unclear whether staff from differing disciplines who may be in early contact with people with established or developing persistent pain are confident to introduce and support self-management for this patient group. Aim To determine the confidence of staff across professional disciplines to introduce and support self-management. Design and Setting Cross-sectional online survey. Methods Charts were constructed to represent information on professional grouping, prior training in self-management and confidence in supporting key components of self-management for persistent pain. Analysis of variance was used to test for differences between groups. Results Overall, 165 practitioners reported confidence to support self-management below the midpoint of a ten-point scale and 93 above. There were few differences between different professions apart from in explaining pain (f = 6.879 p < .001), managing activity levels (f = 6.340 p < .001) and supporting healthy habits (f = 4.700, p = .001) in which physiotherapists expressed higher confidence than other professional groups. There was no difference in confidence expressed between staff who had or had not received previous training in self-management (f = 1.357, p = .233). Conclusions Many front-line staff who might be expected to introduce and deliver self-management support for persistent pain lack the confidence and skills to do so. This is consistent with a known lack of education about pain across disciplinary boundaries in primary and community-based care. In order to meet treatment priorities for persistent pain there is an urgent need to upskill the workforce by providing access to good quality training and resources.Health Education England Long term Conditions and Innovation Fund

Subjectivity, affect and place: Thinking with Deleuze and Guattari’s body without organs to explore a young teen girl’s becomings in a post-industrial locale.

This article explores how subjectivities are affectively tied to the histories of space, place and time through ethnographic research on young people’s everyday lives in a semi-rural post-industrial locale. Drawing on a longitudinal case study of one teenage girl’s inventive practices, we capture moments in time that we arrange as ‘enunciating assemblages’ (Guattari, 2006) to explore how conscious and unconscious affective relations repeat and rupture sedimented gendered histories of place. We experiment with Deleuze and Guattari’s concept of the full and empty Body without Organs to trace the ‘ontological intensities’ of how, when and where newness and change become possible. We argue that making visible young people’s nascent becomings by focusing on what young people already do and imagine, we can potentially support young people pursuing new horizons without losing the very sense of place that makes them feel both safe and alive