Stigmatisation in clinical consultations for persistent physical symptoms/functional disorders: A best fit framework synthesis.

INTRODUCTION: Stigma is a social attribute that links a person to an undesirable characteristic and leads to actions that increase the social distance from that person. This includes different or discriminatory treatment. Stigma is common in healthcare, particularly in people with persistent physical symptoms (PPS) and functional disorders (FD). The aim of this study is to create a new actionable framework to aid understanding of stigmatisation in consultations about PPS/FD and to improve the consultation experiences. METHODS: This framework development used the Best Fit Framework approach to data collected for a scoping review of stigma in functional disorders. The stages included selection of an initial framework from existing conceptual models, mapping quote data from published papers to the framework and an iterative process of revision and re-mapping. The final framework was tested by re-mapping all the quote data to the framework following classification rules. RESULTS: 253 quotes were obtained from the results sections of qualitative studies from a previous scoping review. The framework comprises of prejudice, stereotypes and actions to increase social distance. Stereotype refers to the focus of stigma: this may be the condition, the patient, or their behaviour. Actions that increase social distance include: othering; denial; non-explanation; minimising, norm-breaking; and psychologising. By breaking down stigma into recognisable components, the framework provides a way to understand the difficulties that patients and clinicians face during consultations and a way to develop intervention materials. CONCLUSIONS: This new framework for stigma in clinical consultations for PPS/FDs provides a useful tool for the study of stigma in clinical consultations.

How stigma unfolds for patients with Functional Neurological Disorder.

OBJECTIVE: The aim of this study was to explore experiences of stigma in Functional Neurological Disorder (FND) from the perspective of the patient as it manifests from the onset of symptoms, up to diagnosis and subsequently. BACKGROUND: The existing literature clearly shows that stigma exists for many patients with FND, and is associated with poorer quality of life. However, it is less clear how stigma unfolds, and how it can be alleviated. METHODS: We performed a qualitative interview study with patients who were diagnosed with FND, using data based on semi-structured interviews. Participants were recruited purposively via outpatient clinics. We analysed the data using a reflexive thematic analytic approach, through the lens of recognised stigma frameworks. RESULTS: 15 participants were included in the study, aged between 19 and 68 years, with varying presentations of FND. We identified six themes and 16 subthemes relevant to their stigma trajectory. We found that stigma unfolds through four main domains: 1) through their symptom experience; 2) through "othering" by the healthcare system; 3) through everyday interactions; and 4) from within the self. Across these four domains was a central theme of 5) stages of knowledge, which both fuelled and countered stigma. Lastly, 6) validation of the patient experience emerged as a theme that alleviated stigma. CONCLUSIONS: Stigma did not unfold as a linear process, rather it came from multiple interacting sources. Interventions to target stigma could take the form of improved clinician training, communication, especially around point of diagnosis, and public interventions, co-produced with patients with FND.

Measuring persistent somatic symptom related stigmatisation: Development of the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP).

OBJECTIVE: Persistent somatic symptoms (PSS) describe recurrent or continuously occurring symptoms such as fatigue, dizziness, or pain that have persisted for at least several months. These include single symptoms such as chronic pain, combinations of symptoms, or functional disorders such as fibromyalgia or irritable bowel syndrome. While stigmatisation by healthcare professionals is regularly reported, there are limited measurement instruments demonstrating content validity. This study develops a new instrument to measure stigmatisation by healthcare professionals, the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP). METHODS: Development was an iterative process consisting of research team review, item generation and cognitive interviewing. We generated a longlist of 60 items from previous reviews and qualitative research. We conducted 18 cognitive interviews with healthcare professionals in the United Kingdom (UK). We analysed the relevance, comprehensibility and comprehensiveness of items, including the potential for social desirability bias. RESULTS: After research team consensus and initial feedback, we retained 40 items for cognitive interviewing. After our first round of interviews (n = 11), we removed 20 items, added three items and amended five items. After our second round of interviews (n = 7), we removed four items and amended three items. No major problems with relevance, comprehensibility, comprehensiveness or social desirability were found in remaining items. CONCLUSIONS: The provisional version of the PSSS-HCP contains 19 items across three domains (stereotypes, prejudice, discrimination), demonstrating sufficient content validity. Our next step will be to perform a validation study to finalise item selection and explore the structure of the PSSS-HCP.

Persistent somatic symptom related stigmatisation by healthcare professionals: A systematic review of questionnaire measurement instruments.

OBJECTIVE: Patients with persistent somatic symptoms (PSS) experience stigmatising attitudes and behaviours by healthcare professionals. While previous research has focussed on individual manifestations of PSS related stigma, less is known about sound ways to measure stigmatisation by healthcare professionals towards patients with PSS. This review aims to assess the quality of questionnaire measurement instruments and make recommendations about their use. METHODS: A systematic review using six databases (PubMed, Embase, CINAHL, PsycINFO, Open Grey and EThOS). The search strategy combined three search strings related to healthcare professionals, PSS and stigma. Additional publications were identified by searching bibliographies. Three authors independently extracted the data. Data analysis and synthesis followed COSMIN methodology for reviews of outcome measurement instruments. RESULTS: We identified 90 publications that met the inclusion criteria using 62 questionnaire measurement instruments. Stereotypes were explored in 92% of instruments, prejudices in 52% of instruments, and discrimination in 19% of instruments. The development process of the instruments was not rated higher than doubtful. Construct validity, structural validity, internal consistency and reliability were the most commonly investigated measurement properties. Evidence around content validity was inconsistent or indeterminate. CONCLUSION: No instrument provided acceptable evidence on all measurement properties. Many instruments were developed for use within a single publication, with little evidence of their development or establishment of content validity. This is problematic because stigma instruments should reflect the challenges that healthcare professionals face when working with patients with PSS. They should also reflect the experiences that patients with PSS have widely reported during clinical encounters.

"You're so powerless": Takatapui/LGBTIQ+ people's experiences before becoming homeless in Aotearoa New Zealand.

Little is known in Aotearoa New Zealand about experiences of homelessness amongst Takatapui/LGBTIQ+ identifying people, despite growing international literature regarding LGBTIQ+ homelessness. Using data from semi-structured interviews with eight people who identified as Takatapui/LGBTIQ+ and had experienced homelessness, this paper explores their experiences prior to becoming homeless. These experiences are placed into the categories of: the pervasiveness of instability (especially in regards to family relationships, finances, and housing), having to grow up fast due to social and material conditions, experiences of looking for housing in stressed markets, and systems failures that resulted in a lack of autonomy. These results show that instability and systems failures are key contributors to Takatapui/LGBTIQ+ people becoming homeless in Aotearoa New Zealand.

Service usage of a cohort of formerly homeless women in Aotearoa New Zealand.

PURPOSE: The aim of this paper is to explore government service usage across the domains of health, justice, and social development and tax for a cohort of formerly homeless people in Aotearoa New Zealand, focusing specifically on the experiences of women. The Integrated Data Infrastructure is used, which links our de-identified cohort data with administrative data from various Aotearoa New Zealand Government departments. RESULTS: Of the cohort of 390, the majority (53.8%) were women. These women were more likely to be younger (57.1% were aged 25-44), indigenous Maori (78.6%), and have children (81.4%). These women had lower incomes, and higher rates of welfare benefit receipt, when compared to men in the cohort and a control group of women from the wider population. CONCLUSIONS: The cohort were primarily female, younger, Maori, and parents. They earned much less than their non-homeless counterparts, and relied heavily on government support. The neoliberalisation of the welfare state, high rates of women's poverty, and the gendered nature of parenthood means that women's homelessness is distinct from men's homelessness.

LGBTIQ+ Homelessness: A Review of the Literature.

Lesbian, Gay, Bisexual, Transgender, Intersex, and Queer (LGBTIQ+) people's experiences of homelessness is an under-explored area of housing and homelessness studies, despite this group making up 20-40% of homeless populations. Despite this, much of the existing literature focuses on specific elements of LGBTIQ+ homelessness, and often does not consider the intersections of these elements, instead placing them into individual siloes. Our approach is an intersectional one; this paper identifies the key themes in the existing research, and analyses how these themes interact to reinforce the discrimination and stigma faced by LGBTIQ+ people who experience homelessness. This intersectional-systems thinking approach to LGBTIQ+ homelessness can be used to develop well-informed, culturally sensitive support programmes.

Service usage by a New Zealand Housing First cohort prior to being housed.

BACKGROUND: The Ending Homelessness in New Zealand: Housing First research programme is evaluating outcomes for people housed in a Housing First programme run by The People's Project in Hamilton, New Zealand. This baseline results paper uses administrative data to look at the scope and duration of their interactions with government services. METHODS: We linked our de-identified cohort to the Integrated Data Infrastructure (IDI). This database contains administrative data on most services provided by the New Zealand Government to citizens. Linkage rates in all datasets were above 90%. This paper reports on the use of government services by the cohort before being housed. We focus on the domains of health, justice and income support. RESULTS: The cohort of 390 people had over 200,000 recorded interactions across a range of services in their lifetime. The most common services were health, justice and welfare. The homeless cohort had used the services at rates far in excess of the general population. Unfortunately these did not prevent them from becoming homeless. CONCLUSION: These preliminary findings show the homeless population have important service delivery needs and a very high level of interaction with government services. This highlights the importance of analysing the contributing factors towards homelessness; for evaluation of interventions such as Housing First, and for understanding the need for integrated systems of government policy and practice to prevent homelessness. This paper also provides the baseline for post-Housing First evaluations.