Health-related quality of life among Ebola survivors in Sierra Leone: the role of socio-demographic, health-related and psycho-social factors

Background Evidence of how social factors affect the health-related quality of life (HRQoL) of Ebola virus disease (EVD) survivors is limited. Our study explores the association between socio-demographic, health-related and psycho-social (stigma) factors and EVD survivors' health-related quality of life (HRQoL) in Sierra Leone. Methods We conducted a nationwide cross-sectional study among 358 EVD survivors between January and August 2018. We used a multistage sampling method to recruit EVD survivors, and the RAND 36-Item Health Survey item was used to assess the HRQoL. Data were analysed using descriptive statistics and multiple linear regression. Results When comparing by each dimension in relation to their respective summary scores, role limitation physical [0.00 (50.00)] and role limitation emotional [0.00 (33.33)] were the most affected physical health and mental health domains among EVD survivors respectively. EVD survivors who were older (β = − 3.90, 95% CI − 6.47 to − 1.32, p = 0.003), had no formal education (β = − 2.80, 95% CI − 5.16 to − 0.43, p = 0.021), experienced a unit increase in the number of post-Ebola symptoms (β = − 1.08, 95% CI − 1.74 to − 0.43, p < 0.001) and experienced a unit increase in enacted stigma (β = − 2.61, 95% CI − 4.02 to − 1.20, p < 0.001) were more likely to report a decreased level of physical health. EVD survivors who experienced a unit increase in the time spent in the Ebola treatment centre (β = − 0.60, 95% CI − 0.103 to − 0.18, p = 0.006) and those who experienced a unit increase in enacted Stigma were more likely to report decreased levels of mental health (β = − 1.50, 95% CI − 2.67 to − 0.33, p = 0.012). Conclusion Sociodemographic, health-related, and psycho-social factors were significantly associated with decrease levels of HRQoL. Our findings improve our understanding of the factors that might influence the HRQoL and suggest the need for EVD survivors to be provided with a comprehensive healthcare package that caters for their physical and mental health needs.

Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing.

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

Background Autism Spectrum disorder (ASD) has uniquely stigmatizing aspects because children with ASD have no physical markers of their condition. Parents are usually blamed and judgment from others is often internalized (felt stigma). Aim This study was conducted to determine knowledge about ASD, negative experiences (enacted stigma), internalization of stigma (felt or self stigma) and its correlates among parents of children with ASD in Lagos, Nigeria. Methods This was a cross-sectional study of 230 parents in Lagos, Nigeria employing mixed-method data collection methods. Quantitative data were collected using a structured interviewer-administered questionnaire and analyzed with Epi- Info™ version 7.0 statistical package. Data were summarized with proportions, mean and standard deviation. Chi square and Spearman’s correlation tests were done, and the level of significance was pre-determined at 5% (p < 0.05). In-depth interviews were also conducted among six parents to further explore the topic. The interviews were analyzed narratively. Results The proportion of mothers and fathers were 175 (76.1%) and 55 (23.9%) respectively. The mean age of respondents was 42 ± 8.5 years. Overall knowledge of ASD was very poor as only 3(1.3%) had good knowledge. Overall, 122(53%) usually had negative experience of parenting a child with ASD (enacted stigma), mothers (17.1%) more than fathers (9.1%). Majority 192(83.5%) internalized stigma. There was a low–moderate correlation between ‘enacted’ stigma and ‘internalized’ stigma (ρ- 0.400, p < 0.001). From in-depth interviews, many parents revealed that their child’s condition had negative effects on the family. Many also recounted negative experience of stigma. Conclusion Overall, parents of children with ASD had poor knowledge of the condition. Majority internalized stigma and this increases with negative treatment from others. Parents should be properly educated about ASD. Community-based education to increase awareness about ASD in addition to encouraging people to show empathy and reduce stigmatizing behaviour towards parents of children with ASD are recommended.

The effect of stigma on social participation in community-dwelling Chinese patients with stroke sequelae: A cross-sectional study

Objective To explore the effect of stigma on social participation in community-dwelling Chinese patients with stroke sequelae. Design A cross-sectional survey study. Setting The study was conducted in two community centres in Tianjin, China. Subjects Community-dwelling Chinese patients with stroke sequelae. Measures Chinese version of Stigma Scale for Chronic Illness, Chinese version of Impact on Participation and Autonomy, Modified Barthel index, Self-Rating Depression Scale, Social Support Rating Scale, Medical Coping Modes Questionnaire, background and disease-related questions. Pearson’s correlation coefficients were computed between stigma and social participation. The impact of stigma on social participation was estimated by hierarchical multiple regression analysis after controlling for demographic, physical and psychosocial characteristics. Results In total, 136 patients with stroke sequelae were included in this study, with a mean age of 67.8 years. The Chinese version of the Stigma Scale for Chronic Illness had a mean score of 48.4 (SD 16.9), and the Chinese version of the Impact on Participation and Autonomy was 67.1 (SD 21.1). Significant correlations were found between stigma and social participation. Pearson’s correlation coefficient ranged from 0.354 to 0.605 ( P < 0.01). Enacted stigma provided a significant explanation for the variance of social participation by 1.1% ( P < 0.05). Felt stigma provided a significant explanation for the variance of social participation by 2.9% ( P < 0.001). Conclusion Felt stigma and enacted stigma have independent associations with social participation. Patients with stroke sequelae who reported higher stigma experienced a lower level of social participation.

Stigma in Multiple Sclerosis: The Important Role of Sense of Coherence and Its Relation to Quality of Life

Background Anticipated and experienced stigma constitute important issues for patients with multiple sclerosis receiving adequate healthcare. Stigma is likely to be associated with lower quality of life in patients with multiple sclerosis, but the underlying mechanisms and contributing factors are unclear. Methods We conducted a cross-sectional survey among N = 101 patients with a diagnosis of multiple sclerosis in a German outpatient department. Patients completed questionnaires on enacted and self-stigma (SSCI-8), sense of coherence (SOC-L9) and quality of life (MusiQol). Age, sex, disease duration, disability or extent of limitations (EDSS), cognition (SDMT), depression (BDI-II) and fatigue (FSMC) were used as covariates in linear regression and mediation models. Results 57.3% of patients with MS reported having experienced stigmatization due to MS at least once. Fatigue (b = -0.199, p < 0.001), enacted stigmatization experience (b = -0.627, p = 0.010) and sense of coherence (b = 0.654, p < 0.001) were significant predictors for quality of life. The mediation analysis showed a partial mediation of the association between enacted stigma and quality of life by patients’ sense of coherence (direct effect: b = -1.042, t = -4.021, p < 0.001; indirect effect: b = -0.773, CI = -1.351—-0.339. The association of self-stigma with quality of life was fully mediated by sense of coherence (b = -1.579, CI = -2.954—-0.669). Conclusion Patients with multiple sclerosis are affected by stigma, which is associated with lower quality of life. Sense of coherence is a potentially important mediator of stigma and represents a promising target to refine existing stigma interventions and improve the quality of life in these patients.

Impact of experienced HIV stigma on health is mediated by internalized stigma and depression: results from the people living with HIV stigma index in Ontario

Background Experiences of HIV stigma remain prevalent across Canada, causing significant stress and negatively affecting the health and wellbeing of people living with HIV. While studies have consistently demonstrated that stigma negatively impacts health, there has been limited research on the mechanisms behind these effects. This study aims to identify which dimensions of stigma have significant relationships with self-rated health and examine the mechanisms by which those types of stigma impact self-rated health. Methods We recruited 724 participants to complete the People Living with HIV Stigma Index in Ontario, designed by people living with HIV to measure nuanced changes in stigma and discrimination. The present study utilizes data from externally validated measures of stigma and health risks that were included in the survey. First, we conducted multiple regression analyses to examine which variables had a significant impact on self-rated health. Results from the multiple regression guided the mediation analysis. A parallel mediation model was created with enacted stigma as the antecedent, internalized stigma and depression as the mediators, and self-rated health as the outcome. Results In the multiple regression analysis, internalized stigma (coefficient = −0.20, p < 0.01) and depression (coefficient = −0.07, p < 0.01) were both significant and independent predictors of health. Mediation analyses demonstrated that the relationship between enacted stigma and self-rated health is mediated in parallel by both internalized stigma [coefficient = −0.08, se = 0.03, 95% CI (−0.14, −0.02)] and depression [coefficient = −0.16, se = 0.03, 95% CI (−0.22, −0.11)]. Conclusions We developed a mediation model to explain how HIV-related stigma negatively impacts health. We found that that enacted stigma, or experiences of prejudice or discrimination, can lead to internalized stigma, or internalization of negative thoughts regarding one’s HIV status and/or increased depressive symptoms which then may lead to worse overall health. Highlighting the importance of internalized stigma and depression has the potential to shape the development of targeted intervention strategies aimed at reducing the burden of stigma and improving the health and wellbeing of people living with HIV.

Perceived Stigma as a Contextual Barrier to Early Uptake of HIV Testing, Treatment Initiation, and Disclosure; The Case of Patients Admitted with AIDS-Related Illness in a Rural Hospital in South Africa

We explored the extent to which perceived HIV-related stigma influences the disclosure and concealment of HIV status to family among adult patients hospitalised for AIDS-related illness, and described reports of negative responses and enacted stigma following disclosure. We conducted interviews with a purposeful sample of 28 adult patients in a rural South African hospital. Data analysis was deductive and inductive and followed the thematic approach. We found evidence of delayed HIV diagnosis and initiation of treatment. There was delayed and selective disclosure as well as concealment of the HIV-positive status. The disclosure was delayed for months or even years. During that time, there was active concealment of the HIV status to avoid stigma from family, friends, and community. When disclosure occurred, there was selective disclosure to close family members who would keep the secret and respond favorably. Although the participants disclosed mostly to close family, some of their post-disclosure experiences included incidents of enacted stigma and discrimination. The fear of perceived stigma and self-stigma influenced the active concealment of their HIV status from others. Continuous concealment of one’s HIV status and delayed disclosure limit the opportunities for support and care. There is a need to take into consideration the interaction between HIV-related stigma and disclosure to develop disclosure-counselling strategies in primary health care settings.