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Objective
To examine the influence of stigma on the quality of life of patients with a neuromuscular disease.
Design
Cross-sectional postal survey.
Setting
Outpatient clinic of the Department of Neurology, University Hospital Groningen, the Netherlands.
Subjects
Patients diagnosed with a neuromuscular disease.
Measures
The Stigma Scale for Chro...
Citations
... Stigma can have a strong impact on an individual's health related quality of life (HRQoL) [2]. Patients with neuromuscular disease can suffer more from their fear of discrimination and shame than from actual experienced stigmatization [3]. In adolescents, acne is associated with elevated self-consciousness, social isolation, and interpersonal difficulties [4,5]. ...
Purpose
To develop the PROMIS Pediatric Stigma (PPS) and Skin (PPS-Skin) by constructing a common metric for measuring stigma in children with various conditions, while capturing the unique features of each condition.
Methods
Data from 860 children, ages 8–17, with a diagnosis of epilepsy, pNF (neurofibromatosis type 1 associated neurofibroma plexform), MD (muscular dystrophy), cancer, or skin conditions recruited from three projects were analyzed. Children with epilepsy, pNF and MD (sample-1) completed the original 18-item Neuro-QoL Stigma, while children with cancer and skin conditions (e.g., atopic dermatitis, psoriasis, and genetic skin disorders; sample-2) completed a 16-item version and 6 additional skin related items. Exploratory factor analysis (EFA) and confirmatory analysis (CFA) were used to evaluate unidimensionality of 24 stigma items. Differential item functioning (DIF) was used to evaluate measurement equivalence on group, gender, age, and conditions. Item response theory model (IRT) was used to construct the final measure.
Results
Sufficient unidimensionality was supported by both EFA and CFA. No items showed significant DIF indicating stable measurement properties across groups of comparison. All items fit the IRT model and were able to be calibrated together to form the PPS which consists of 18 core items. The PPS-Skin (18 cores items + 6 skin items) was developed by calibrating 6 skin items onto the common metric as the PPS.
Conclusions
We used IRT techniques to successfully develop the PPS and the PPS-Skin, which share a common metric and account for unique and common concerns related to chronic conditions.
... People with MS experience mild to moderate social stigma as a result of the disease [16], and this social stigma has potential consequences for their health and quality of life [17], so people with the disease discover social stigma an obstacle to their daily functioning and flexibility [18]. Socially stigmatized patients are frustrated and isolated, which reduces the use of medical services and also weakens their quality of life [19]. Social stigma in MS disease may cause increased anxiety, depression and decreased self-esteem [16]. ...
... The researcher-made Social stigma questionnaire was prepared after reviewing similar texts and articles [10,12,13,17,19] and using the opinions of experts in related fields. The questionnaire contains 20 questions about different aspects of social stigma. ...
Introduction
Multiple sclerosis (MS) is the most prevalent disease of the central nervous system that affects the behavioral characteristics and lifestyle of patients. This study aimed to determine the social stigma and its relationship with quality of life in people with MS referring to the Jahrom MS Association.
Method
This cross-sectional study was conducted on MS patients who are members of the MS Association of Jahrom City in Fars province, southern Iran in 2022. The samples were selected by census method. The number of participants remain 223 people. The data was collected using a standard two-part demographic and Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire and a researcher-made 20-question Social stigma questionnaire which validity and reliability were measured. Data analysis was done in a descriptive way (frequency, percentage, mean and standard deviation), univariate regression and multivariable linear regression. Data analysis was done using SPSS version 17 and at a significance level of less than 0.05.
Result
Based on univariate regression, marriage [B = 0.2, p-value = 0.004], physical health [B = 0.4, p-value < 0.001], emotional well-being [B = 0.4, p-value = 0.001], cognitive functioning [B = 0.4, p-value < 0.001], health distress [B = 0.5, p-value < 0.001] had a positive and significant relationship with patients’ quality of life. Duration of disease [B=-0.2, p-value < 0.001], physical role limitations [B=-0.4, p-value < 0.001], emotional role limitations [B=-0.5, p-value < 0.001], pain [B=-0.4, p-value < 0.001], energy [B=-0.3, p-value = 0.02], health perception [B=-0.3, p-value = 0.001], social functioning [B=-0.4, p-value < 0.001], sexual function [B=-0.3, p-value < 0.001], change in health [B=-0.3, p-value < 0.001], sexual function satisfaction [B=-0.3, p-value < 0.001] and social stigma [B=-0.3, p-value < 0.001] had a negative and significant relationship with patients’ quality of life (p < 0.05).
Conclusion
The study has emphasized the relationship between the extent and severity of symptoms and disorders with the quality of life of people with MS. The results of the study showed factors such as marriage, physical health and health distress have a positive relationship and factors like duration of disease, physical role limitations, and social stigma have a negative relationship with the quality of life of people with MS. The quality of life of people with MS is more influenced by mental and psychological factors than the physical limitations of these patients.
... In absence of a cure, optimizing quality of life is a major focus in the care for those living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). There are indications that quality of life among ALS/MND patients is among others impacted by experiences of healthrelated stigma (1,2). Health-related stigma resulting from visible symptoms and the use of assistive technologies and devices (3)(4)(5)(6), may lead to social isolation (3,5,7), psychological distress (7,8), and reluctance to seek support or use assistive devices (3,6), thereby impairing patients' quality of life. ...
... Felt stigma refers to shame of being deviant and the feeling that discrimination or social exclusion will happen (8). Previous research (1) indicates that although both forms of stigma can be considered determinants of quality of life in people with ALS, felt stigma is a stronger determinant. ...
... Given the putative adverse impact of stigma on patients' and caregivers' quality of life (1,7), stigma deserves attention as a potential target in the care of people living with ALS. To inform clinical practice, we explored experiences of enacted and felt stigma among patients and caregivers. ...
Objective
Previous work suggests that stigma negatively impacts quality of life in people living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). This study aimed to explore experiences of enacted stigma (experienced discrimination) and felt stigma (shame, fear of exclusion) among Dutch ALS/PMA patients and their caregivers. A secondary aim was to assess associated factors of enacted/felt stigma among patients.
Methods
A two-phase mixed-methods study was conducted, comprising cross-sectional surveys among 193 ALS/PMA patients and 87 caregivers, and semi-structured interviews with 8 ALS/PMA patients and 11 family caregivers. Descriptive and multivariable regression analyses along with qualitative content analysis were used to analyze survey and interview data.
Results
Survey findings indicate that patients and caregivers experience enacted and felt stigma. Interviews with both patients and caregivers revealed two manifestations of enacted stigma, including social exclusion (e.g. relationship distancing) and stigmatizing attitudes/behaviors displayed by others (e.g. staring), and three manifestations of felt stigma, including alienation (e.g. shame/embarrassment), perceived discrimination (e.g. feeling judged) and anticipated stigma (e.g. fear of exclusion). Patients and caregivers engaged in concealing and resisting responses to stigma. More bulbar symptoms, King’s clinical stage, younger age and living without a partner were significantly associated with enacted/felt stigma among patients.
Conclusions
Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice. Future research may shed more light on the determinants as well as the consequences of stigmatizing experiences among patients and caregivers.
... A more recent definition characterizes stigma as a social process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or a group [8]. Unfortunately, a large number of diseases suffer from stigmatization, including AIDS, neurological disorders such as multiple sclerosis and epilepsy, obesity, and a number of chronic diseases, including liver diseases [5,6,[9][10][11][12][13][14][15]. Stigmatization has a large array of potential consequences on patients suffering from these diseases that include depressive symptoms, feelings of helplessness and isolation, shame, poor psychological function, decreased physical and social activity, poor selfimage, and reduced quality of life [1,4,10,11,[16][17][18][19][20]. ...
Background and aims
Stigmatization is a well-documented problem of some diseases. Perceived stigma is common in alcohol-related liver disease and hepatitis C, but little information exists on stigma in patients with non-alcoholic fatty liver disease (NAFLD). Aim of the study was to investigate frequency and characteristics of perceived stigma among patients with NAFLD.
Methods
One-hundred and ninety-seven patients seen at the liver clinic were included: a study group of 144 patients with NAFLD, 50 with cirrhosis (34 compensated, 16 decompensated), and a control group of 53 patients with alcohol-related cirrhosis. Demographic, clinical, and laboratory data were collected. Quality-of-life was assessed by chronic liver disease questionnaire (CLDQ). Perceived stigma was assessed using a specific questionnaire for patients with liver diseases categorized in 4 domains: stereotypes, discrimination, shame, and social isolation.
Results
Perceived stigma was common in patients with NAFLD (99 patients, 69%) and affected all 4 domains assessed. The frequency was slightly higher, yet not significant, in patients with NAFLD cirrhosis vs those without (72% vs 67%, respectively; p = 0.576). In patients without cirrhosis perceived stigma was unrelated to stage of disease, since frequency was similar in patients with no or mild fibrosis compared to those with moderate/severe fibrosis (66% vs 68%, respectively). There were no differences in perceived stigma between patients with compensated cirrhosis and these with decompensated cirrhosis. Among patients with cirrhosis, stigmatization was more common in alcohol-related vs NAFLD-cirrhosis, yet differences were only significant in two domains. In patients with NAFLD, perceived stigma correlated with poor quality-of-life, but not with demographic or clinical variables.
Conclusions
Perceived stigmatization is common among patients with NAFLD independently of disease stage, is associated with impaired quality-of-life, and may be responsible for stereotypes, discrimination, shame, and social isolation, which may affect human and social rights of affected patients.
... 1 There are many different types of NMDs. Although precisely how many currently exist is difficult to determine, Van der Beek et al. 2 estimate that there are approximately 600 different types of NMDs (p. 1030). ...
... Not surprisingly, reduced social participation in ADLs and leisure has been linked to a decrease in QOL for individuals presenting with disability. 2 People with disabilities show higher levels of loneliness, a lack of friends, and fewer opportunities to be with the friends they may have compared to people without a disability. 11 This pattern often spirals from the general lack of opportunities to participate in leisure opportunities, and thus less opportunity to socialize, meet new people and establish, or maintain strong relationships with others. ...
Introduction
Adolescents with neuromuscular disease face significant challenges accessing social leisure activities. Assistive technology has provided new opportunities for those with neuromuscular disease to augment their social lives and leisure pursuits. However, there is limited research evaluating the impact of these technologies.
Methods
This study employed mixed methods to evaluate the potential impact of simple robotics on psychosocial factors and quality of life for those adolescents living with neuromuscular diseases. Semi-structured qualitative interviews were performed, as well as the adult Psychosocial Impact of Assistive Technology Device (PIADS) with 9 adolescents, ranging in age from 13 to 19 years old.
Results
Thematic analysis of the qualitative data resulted in five major themes: everyday lives and seasonality; socialization; leisure activities; robotics as a leisure activity; and ease of use of robotics. The PIADS found the individual scores demonstrated a range from very little yet positive perceived impact to maximum positive impact in each subscale (competence, adaptability, and self-esteem).
Conclusions
Simple mainstream robotics, paired with personalized access methods to control them, offer potential leisure and social integration opportunities to adolescents with neuromuscular diseases in a variety of settings, indoors and outdoors. The findings of this study suggest there are opportunities for this type of mainstream technology to be applied not just to adolescents, but potentially children of all ages with neuromuscular disease, across a variety of environments.
... Studies of a variety of conditions/illnesses have found that enacted or anticipated stigma and self-stigma are associated with negative mental health outcomes, including depression, loss of confidence, low self-esteem, low adherence with medical treatment when compliance might bring on negative reactions from others, and selfisolation that limits an affected person's use of social support and economic participation [14,[34][35][36][37]. Stigma has also been linked to decisions to pursue aesthetic surgical treatment, with limited functional purpose, in order to reduce negative social responses [38]. ...
... Higher levels of self-stigma have been found by other investigators and may indicate that FD, at least in some contexts, has a low level of disruptiveness on interaction and / or is concealable. For example, higher levels of enacted stigma were reported for more socially disruptive muscular nerve disorders than peripheral nerve disorders [36]. The child with FD knows that they are subject to being discredited and rejected even when it does not occur. ...
Background
Stigma, both enacted and internalized, is part of the illness experience of many chronic conditions / diseases and has been found to increase psychological distress, lower self-esteem, and impact social engagement lowering quality of life (QOL). Stigma among pediatric patients is of particular concern due to its potential impact on identity formation. Using patient data from the online FD/MAS Alliance Patient Registry (FDMASAPR), this study seeks to 1) determine levels of enacted and self-stigma in a pediatric population of fibrous dysplasia (FD) / McCune Albright syndrome (MAS) patients and 2) to explore the relationship between stigma and anxiety and depression.
Methods
This is a cross sectional analysis of deidentified self-report data from 18 pediatric patients. Key analytic variables include the Neuro-QOL stigma short form, the Hospital Anxiety and Depression Scale (HADS), diagnostic category and craniofacial involvement, and select demographics. Sample means and score distributions are examined. Bivariate relationships between stigma, anxiety and depression and patient’s personal and medical characteristics are established through analysis of variance and correlation.
Results
Composite stigma levels for FD/MAS pediatric patients were comparable to those of children with multiple sclerosis, epilepsy, and muscular dystrophy. Self-stigma was more frequently reported than enacted/felt stigma, but few patients indicated complete freedom from either type of stigma. Diagnosis was significantly related to self-stigma. Significant bivariate relationships were found between depression and enacted/felt and self-stigma and between anxiety and self-stigma.
Conclusions
This study establishes the illness experience of pediatric patients with FD / MAS is impacted by stigma and suggests they should be regularly screened for stigma and psychological distress. It supports the integration of clinical psychologists/ therapists in regular patient care, referral of families to advocacy organizations, and indicates that rare disease patient registries can be a useful tool in efforts to improve the QOL of patients.
... Therefore, the term stigma can encompass a range of negative actions and associations that can be attributed to an individual based on their perceived differentness. In relation to MND, only one study has quantitatively assessed stigma (van der Beek, Bos, Middel & Wynia, 2013). Although the authors found that stigma was a major predictor of poorer quality of life, with 'felt stigma' a stronger predictor than 'enacted stigma', the study's outcome measure was quality of life, rather than psychological distress in particular, and individuals diagnosed with MND only made up 9% of the total number of participants. ...
Objectives:
This study aimed to investigate the mechanisms through which social support and felt stigma influence the relationship between motor neurone disease (MND)-related stress and psychological distress for people with MND. Although a lack of social support has been identified as a significant predictor of psychological distress for individuals with MND, the mechanisms through which this relationship exists have not been assessed, nor have the predictive nature of stigma. Furthermore, the theoretical model specifying the effects of enacted stigma on self-stigma has not been tested in individuals with MND.
Design:
A cross-sectional design utilizing an online survey method was used. It was hypothesized that social support would moderate the relationship between MND-related stress (operationalized as enacted stigma or physical functioning) and psychological distress (operationalized as depression, anxiety, and stress). Furthermore, felt stigma would significantly mediate the relationship between MND-related stress (enacted stigma) and psychological distress.
Methods:
Individuals with a diagnosis of MND were recruited internationally through social media and through various organizations and support services. Seventy-seven participants completed the online survey.
Results:
Significant correlations were identified between social support, felt, and enacted stigma and psychological distress. Moderation analysis was not significant. However, the mediation analyses identified felt stigma as a significant mediator of the relationship between enacted stigma and psychological distress. A direct relationship between enacted stigma and stress (but not depression and anxiety) was also evident.
Conclusions:
A comprehensive approach to tackling stigma is important in ameliorating psychological distress for people with MND. Limitations of the current study are discussed, along with implications for clinical practice.
... Conventional statistical techniques are most often used to analyze QoL without involving space (see, for example, Lee and Jung, 2014;Jenaro et al., 2013;Helliwell and Huang, 2014;Campanera and Higgins, 2011;Van der beek et al., 2013;Mohan and Twigg, 2007;Botero Soto and Londoño Pérez, 2013). However, space is becoming an increasingly relevant issue in the social sciences (Goodchild and Janelle, 2010). ...
The study of subjective welfare or quality of life perceived (QoL) is a topic of nowadays in the Social Sciences, due to the implications that these studies have for design and evaluation social and economic policies. This paper focuses in two tasks main: a) measure the QoL of the homes of the city of Medellin-Colombia, using conventional techniques multivariate statistics to produce an indicator; and b) by means of the indicator, analyze if the living standard of the Medellin’s homes is distributed randomly on the space or present a significant association of similar (dissimilar) values between near zones. The results show that QoL spatially varying distribution in the city of Medellin y que existen clústeres de barrios donde, de acuerdo a las variables del indicador considerado, se concentran la mejor y la peor calidad de vida percibida por sus ciudadanos. Estos resultados muestran que en las zonas centro-oeste y sureste de la ciudad se concentran las mejores condiciones, mientras que en el resto de la ciudad se encuentran las mayores necesidades.
... In each victim of stigmatisation, we can recognise any of the four domains of stigma and the relationship between each of them and the impact on patients' health and wellbeing is well documented in the literature [20][21][22]. Indeed, the entity of stigmatisation depends on many factors, involving the patient, the disease, and the social context. ...
Inflammatory bowel disease, which includes Crohn's disease and ulcerative colitis, is an immune-mediated, chronic relapsing disorder characterised by severe gastrointestinal symptoms that dramatically impair patients' quality of life, affecting psychological, physical, sexual, and social functions. As a consequence, patients suffering from this condition may perceive social stigmatisation, which is the identification of negative attributes that distinguish a person as different and worthy of separation from the group. Stigmatisation has been widely studied in different chronic conditions, especially in mental illnesses and HIV-infected patients. There is a growing interest also for patients with inflammatory bowel disease, in which the possibility of disease flare and surgery-related issues seem to be the most important factors determining stigmatisation. Conversely, resilience represents the quality that allows one to adopt a positive attitude and good adjustments despite adverse life events. Likewise, resilience has been studied in different populations, age groups, and chronic conditions, especially mental illnesses and cancer, but little is known about this issue in patients with inflammatory bowel disease, even if this could be an interesting area of research. Resilience can be strengthened through dedicated interventions that could potentially improve the ability to cope with the disease. In this paper, we focus on the current knowledge of stigmatisation and resilience in patients with inflammatory bowel disease.
... El que estas personas no tengan buenas posibilidades para dar cuenta de sus malestares, sufrimientos y vulnerabilidades derivados de su condición de salud, puede tener efectos negativos. De hecho, se ha reportado que debido a los estigmas o rechazos que pesan sobre las personas con enfermedades crónicas, como la EM, estas tienden al aislamiento, lo cual deriva en decremento de la utilización de los servicios de salud, con el consecuente empeoramiento de su salud y de su calidad de vida (35,36). ...
Objetivo:
Comprender las barreras a la expresión del sufrimiento, que encuentran algunas personas con esclerosis múltiple, atendidas en el Instituto Neurológico de Colombia de Medellín.
Materiales y método:
Estudio basado en un paradigma construccionista y hermenéutico, con enfoque narrativo, de tipo polifónico, en el que durante los años 2015 y 2016, se entrevistaron a profundidad a cinco personas con esclerosis múltiple, dos de sus cuidadores y dos profesionales tratantes. Se construyó una narración polifónica para cada participante, se analizaron sus historias de vida y se extrajeron relatos en los que se aprecia exigencia social y personal de ocultar sus sufrimientos.
Resultados:
En estos relatos se evidenció un pedido constante de fortaleza ante sus dificultades y una tendencia a mostrar que pueden continuar realizando sus actividades cotidianas como lo hacían antes de enfermar, pese al aumento de la discapacidad. Eso se aprecia igualmente en los relatos de sus cuidadores, quienes también ocultan sus sentimientos y el desgaste generados en la labor de cuidar.
Conclusiones:
Estos pedidos de fortaleza pueden deberse a la tendencia contemporánea de sobrevalorar la tenacidad personal y de buscar constantemente el bienestar y la felicidad, lo cual conlleva una exigencia de mostrarse como individuos capaces en todo momento. Ante esa situación, de quienes presentan condiciones discapacitantes, como la esclerosis múltiple, se espera que sean ejemplo de superación de las adversidades, lo cual refleja un rechazo cultural del sufrimiento y a aceptar la fragilidad humana. Esta situación puede constituirse en un estigma hacia las personas con esclerosis múltiple.