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Background The principle of epistemic justice (EJ) recognises the need for a person’s voice to be both heard (testimonial) and understood (hermeneutic) in the generation of meaning. Funding bodies now require all research to have embedded patient and public involvement (PPI) — an active partnership between patients, carers, and the public with researchers, which influences and shapes research. Aim Current PPI initiatives potentially enable testimonial justice — ensuring voices are heard. But do they adequately support hermeneutical justice? Method First, a scoping review of published PPI guidance was carried out to describe a current best-practice framework. The framework was then critically reviewed using key concepts described by an EJ understanding of optimising healthcare research for marginalised groups, to consider the potential role of current PPI guidance in supporting epistemically just health research. Results Analysis is ongoing, but the study’s findings describe whether and how current PPI guidelines support and enable the voice of marginalised patient groups to not only be included in research but also to have meaningful impact, including what factors enable and disable tailored care. Conclusion This study suggests ways in which current PPI methods can be used to best advantage. The authors’ ongoing research is discussed to understand further how EJ concepts might help shape the future of PPI in health research. [ABSTRACT FROM AUTHOR]

Background and Objectives A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). Methods Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. Results Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥.70; test–retest ≥.85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). Discussion and Implications SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations. [ABSTRACT FROM AUTHOR]

Recent media reporting has highlighted that incidents of sexual violence frequently occur at live music events. Sexual violence has significant impacts on the health of those who experience it, yet little is known of how it impacts on everyday engagements with music, nor what measures venues and promoters might take to prevent and respond to incidents. Through interviews with concert goers, venue managers, promoters and campaigning groups, we investigated experiences of sexual violence at indie, rock, punk and funk gigs in small venues in one English city. We show that sexual violence at live music events significantly impacts on (predominantly) women's musical participation. We argue that venues and promoters must work proactively to create musical communities that act as a defence against the normalisation of sexual violence, taking inspiration from safer space policies. [ABSTRACT FROM AUTHOR]

Increasing attention to the prevalence of sexual harassment at live music events has led to the adoption of safer spaces policies by venues and promoters. Punk's politics of inclusion and equality suggest that such policies would be welcome as a means to promote access for marginalized groups. However, safer spaces policies are sometimes controversial and their content and implementation patchy. Such policies therefore bear closer examination in order to understand their value and meaning for punk politics. Here we examine the use of safer spaces policies in punk and DIY music spaces asking, how is safety conceptualized, for what purpose, and who benefits from them? We draw on a discourse analysis of safer spaces policies and interviews with punks about sexual violence at gigs. We argue that safer spaces policies can be a valuable tool for promoting access to pleasurable experiences whilst lessening the fear of discrimination, harassment and violence. However, safer spaces can also continue to privilege already privileged punks. We conclude that when safer spaces policies are implemented they must go hand in hand with practical measures to enable inclusion. In doing so the needs of marginalized groups must be prioritized. [ABSTRACT FROM AUTHOR]

Background: Sleep disturbance is a prevalent condition among people living with dementia (PLwD) or mild cognitive impairment (MCI). Its assessment and management within primary care is complex because of the comorbidities, older age, and cognitive impairment typical of this patient group., Aim: To explore how primary care clinicians assess, understand, and manage sleep disturbance for PLwD or MCI; if and why such initiatives work; and how people and their carers experience sleep disturbance and its treatment., Design and Setting: A realist review of existing literature conducted in 2022., Method: Six bibliographic databases were searched. Context-mechanism-outcome configurations (CMOCs) were developed and refined., Results: In total, 60 records were included from 1869 retrieved hits and 19 CMOCs were developed. Low awareness of and confidence in the treatment of sleep disturbance among primary care clinicians and patients, combined with time and resource constraints, meant that identifying sleep disturbance was difficult and not prioritised. Medication was perceived by clinicians and patients as the primary management tool, resulting in inappropriate or long-term prescription. Rigid nursing routines in care homes were reportedly not conducive to good-quality sleep., Conclusion: In primary care, sleep disturbance among PLwD or MCI is not adequately addressed. Over-reliance on medication, underutilisation of non-pharmacological strategies, and inflexible care home routines were reported as a result of low confidence in sleep management and resource constraints. This does not constitute effective and person-centred care. Future work should consider ways to tailor the assessment and management of sleep disturbance to the needs of individuals and their informal carers without overstretching services., (© The Authors.)

Background and Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers' fulfilment of needs., Design and Methods: In this qualitative study, we conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualized accounts of how caring impacted on carers' lives. Our inductive thematic analysis focused upon asking: "What need is being impacted here?" in order to generate a needs-led framework for understanding., Results: Nine themes were widely endorsed. Each completed the sentence: "Being a carer impacts on fulfilling my need to/for….": Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done., Discussion and Implications: These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.