RESUMEN
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 many studies have explored stigmatisation by healthcare professionals towards people with PSS, there is a lack of validated measurement instruments. We recently developed a stigma scale, the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP). The aim of this study is to evaluate the measurement properties (validity and reliability) and factor structure of the PSSS-HCP. STUDY DESIGN AND SETTING: The PSSS-HCP was tested with 121 healthcare professionals across the United Kingdom to evaluate its measurement properties. Analysis of the factor structure was conducted using principal component analysis. We calculated Cronbach's alpha to determine the internal consistency of each (sub)scale. Test re-test reliability was conducted with a sub-sample of participants with a two-week interval. We evaluated convergent validity by testing the association between the PSSS-HCP and the Medical Condition Regard Scale (MCRS) and the influence of social desirability using the short form of the Marlowe Crowne Social Desirability Scale (MCSDS). RESULTS: The PSSS-HCP showed sufficient internal consistency (Cronbach's alpha = 0.84) and sufficient test-retest reliability, intraclass correlation = 0.97 (95% CI 0.94 to 0.99, p<0.001). Convergent validity was sufficient between the PSSS-HCP and the MCRS, and no relationship was found between the PSSS-HCP and the MCSDS. A three factor structure was identified (othering, uneasiness in interaction, non-disclosure) which accounted for 60.5% of the variance using 13 of the 19 tested items. CONCLUSION: The PSSS-HCP can be used to measure PSS stigmatisation by healthcare professionals. The PSSS-HCP has demonstrated sufficient internal consistency, test-retest reliability, convergent validity and minimal influence of social desirability bias. The PSSS-HCP has demonstrated potential to measure important aspects of stigma and provide a foundation for stigma reduction intervention evaluation.
RESUMEN
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.
Asunto(s)
Derivación y Consulta , Estigma Social , Estereotipo , Humanos , Distancia PsicológicaRESUMEN
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.
Asunto(s)
Personal de Salud , Síntomas sin Explicación Médica , Estigma Social , Humanos , Personal de Salud/psicología , Femenino , Masculino , Adulto , Encuestas y Cuestionarios , Estereotipo , Actitud del Personal de Salud , Reino Unido , Persona de Mediana Edad , Psicometría/instrumentación , Reproducibilidad de los ResultadosRESUMEN
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.
Asunto(s)
Investigación Cualitativa , Estigma Social , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Anciano , Enfermedades del Sistema Nervioso/psicología , Calidad de Vida/psicología , Adulto JovenRESUMEN
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.