Purpose, Power, Politics, Privilege, and Promise: A Review of International Perspectives on Autoethnographic Research and Practice

This collection of international critical scholarship seeks to question, provoke, unsettle and reengage with changing understandings of autoethnography, its research and practices. In this review I share my reading of these contributions by highlighting important themes running throughout the book. These involve the shared but differently positioned vulnerabilities present in knowledge making, alongside desires for recognition, visibility or belonging. However, equally present are processes of misrecognition, silencing and othering resulting from unequal distributions of power and privilege. This book reaffirms how autoethnographic research may recognise vulnerabilities, but these are always more than individual suffering. Vulnerability becomes political. The scope and reach of these international perspectives potentially promise grounds for action and resistance much needed from all our research

A systematic review of the health and healthcare inequalities for people with intersex variance

Extensive research documents the health inequalities LGBTI people experience, however far less is known for people with intersex variation. This paper presents a review of intersex health and healthcare inequalities by evaluating research published from 2012 to 2019. In total 9181 citations were identified with 74 records screened of which 16 were included. A synthesis of results spans nine quantitative, five qualitative and two narrative reviews. Literature was searched in Medline, Web of Science, Cochrane, PsycInfo and CINAHL. People with intersex variance experience a higher incidence of anxiety, depression and psychological distress compared to the general population linked to stigma and discrimination. Progressive healthcare treatment, including support to question normative binaries of sex and gender, aids understand of somatic intersex variance and non-binary gender identity, especially when invasive treatment options are avoided or delayed until individuals are able to self-identify or provide consent to treatment. Findings support rethinking sex and gender to reflect greater diversity within a more nuanced sex-gender spectrum, although gaps in research remain around the general health profile and the healthcare experiences of people with intersex variance. More large-scale research is needed, co-produced with peers who have lived experience of intersex variation to ensure policy, education and healthcare advances with greater inclusivity and ethical accountability

Queering the relationship between evidence-based mental health and psychiatric diagnosis: some implications for international mental health nurse curricular development

We critique EB mental healthcare’s relationship with psychiatric diagnosis from a queer paradigm position. We sketch out some initial principles that will hopefully stimulate and contribute to the advancement of mental health nurse educational curricula internationally. This will help bring mental health nurse education more in-line with contemporary developments in narrative psychiatry and formulation as an emerging alternative to psychiatric diagnosis in UK clinical psychology

‘It is still coming from the centre and coming out’:The material conditions adding to over‐bureaucratised patient and public involvement for commissioning health and care in England

Abstract Objective To understand how materiality affects patient and public involvement (PPI) for commissioning and leading health and care services in the English National Health Service (NHS) context. Context From April 2013 groups of general practitioners (GPs) became members of NHS clinical commissioning groups (CCGs) to assess needs and procure core health services for and with local communities. Since July 2022, integrated care systems (ICSs) have subsumed this responsibility. NHS reorganisations have been driven by the promise of more effective and efficient health care and have led to a long history of PPI on economic, political, and moral grounds. Few studies researching PPI in clinical commissioning exist and fewer still have explored a more agentic understanding of materiality and its impact on PPI. Study Design A focused ethnography was used to examine PPI for clinical commissioning within two CCG case study sites in England. Three CCG Governing Body lay representatives, nine GP commissioners and seven service user representatives took part in focus groups and/or were interviewed. Fifteen nonparticipant observations were also carried out at CCG meetings and the associated materiality was examined. Findings The materiality of activities involved in clinical commissioning influences and shapes the nature of PPI. These forms of materiality may dilute and subvert meaningful engagement and involvement that relies on trust, leadership, learning, and partnership working. Conclusion System leaders in ICSs should consider the significance of materiality in centrally driven processes involved in PPI commissioning to reduce barriers and ensure meaningful partnerships within local communities. Patient and Public Contribution The study design ensured PPI throughout the research process in keeping with contemporary research practice guidance. The project steering committee included service users with current or recent PPI clinical commissioning experience outside of the study sites. There was PPI involvement in the original study proposal and its development including the bid for doctoral funds on which this study is based. All were involved in assessing the rigour of the data collection, interpretation of the findings and ensuring the project remained true to the aims of the study. Two members have also participated in presentation of the study findings

The Perception of Disability Among Mothers Living With a Child With Cerebral Palsy in Saudi Arabia

The purpose of this study was to explore the perceptions of disability among Saudi mothers and to understand the implication of the meaning for the mothers of children with disability. A critical ethnographic approach was employed using focus groups and follow-up interviews with the mothers. Three primary themes were identified that specifically influenced and affected the mothers’ experiences: (a) culture and religion, (b) motherhood and disability, and (c) community stigma and discrimination. The study reveals much-needed knowledge and sheds light on a topic, the details of which are rarely available in research literature from the Middle East. The findings further endorse the need for clinicians to listen to the mothers to consider their beliefs and the impact of these beliefs on their experiences. This, in turn, may provide a valuable conceptual lens for health care practitioners to use the family-centered model when working with cerebral palsy children