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Bian L, Jullamate P, Toonsiri C, Suksawang P. Self-care and associated factors of patients with permanent colostomies: A structural equation model. Asia Pac J Oncol Nurs 2025; 12:100666. [PMID: 40124660 PMCID: PMC11930184 DOI: 10.1016/j.apjon.2025.100666] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/18/2024] [Accepted: 02/05/2025] [Indexed: 03/25/2025] Open
Abstract
Objective To investigate the structural relationships between eHealth literacy, health-promoting behaviors, depression, disease stigma, self-efficacy and self-care in Chinese patients with permanent colostomies. Methods A cross-sectional multi-stage random sampling study was conducted between October 2022 and July 2023. The study involved 280 participants with permanent colostomies recruited from four general hospitals in Yancheng City, China. Data were collected using a questionnaire package to assess model variables, including health-promoting behaviors, eHealth literacy, depression, disease stigma, self-efficacy and self-care. Structural equation modeling was employed to analyze the data. Results The model explained 81.8% of the total variance. Health-promoting behaviors (β = 0.41, P < 0.001), eHealth literacy (β = 0.16, P < 0.001), and depression (β = -0.17, P < 0.001) influenced self-care directly. On the other hand, health-promoting behaviors, depression and disease stigma influenced self-care indirectly through self-efficacy mediation. The total, direct, and indirect effects of health-promoting behaviors and depression on self-care were 0.53 and -0.26, 0.41 and -0.17, and 0.12 and 0.09, respectively, in patients with colostomies. Conclusions This study highlights the importance of improving health-promoting behaviors, eHealth literacy, and self-efficacy in patients with colostomies. The study also suggests that reducing depression and disease stigma could enhance patients' self-care. Health care professionals can leverage these findings to develop appropriate programs to improve patients' self-care.
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Affiliation(s)
- Longyan Bian
- School of Nursing, Jiangsu Medical College, Yancheng, China
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Iles IA, Gaysynsky A, Ferrer RA, Vanderpool RC. Cancer, HIV, and stigma: a portfolio analysis of grants funded by the National Cancer Institute. Cancer Causes Control 2025:10.1007/s10552-025-02013-3. [PMID: 40399735 DOI: 10.1007/s10552-025-02013-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/03/2024] [Accepted: 05/12/2025] [Indexed: 05/23/2025]
Abstract
PURPOSE People with HIV (PWH) are at higher risk of cancer compared to the general population and experience worse cancer outcomes compared to cancer patients without HIV. One contributing factor to these outcomes is stigma, a social phenomenon that manifests across both HIV and cancer and compounds among those with a dual diagnosis. To assess the state of research, we conducted a portfolio analysis of National Cancer Institute (NCI)-funded extramural grants on this topic. METHODS A keyword search identified 47 potentially relevant awards funded between Fiscal Years 2014-2024. Sixteen awards (8 research awards; 8 grant supplements) met inclusion criteria and were further double-coded for key study characteristics. RESULTS Funded awards most frequently considered the prevention (n = 6) and treatment (n = 8) phases of the cancer control continuum, with few focusing on other phases of the continuum. Study samples were racially heterogeneous and often socioeconomically challenged, but no grants focused on other high-risk populations such as individuals with disabilities. Stigma was most often assessed as a predictor (n = 10) and measured at the individual level (n = 16). Seven awards assessed both HIV and cancer stigma, but these constructs were usually assessed independently. Only three grants included an intervention component addressing stigma. CONCLUSION NCI-supported research on stigma in the context of HIV and cancer has been limited over the past decade. Results point to opportunities for enhancing extramural research in this area, including developing and testing stigma reduction interventions, expanding research across the cancer control continuum, and focusing on all affected populations.
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Affiliation(s)
- Irina A Iles
- Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD, 20850, USA.
| | - Anna Gaysynsky
- Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD, 20850, USA
- ICF Next, ICF, Rockville, MD, 20850, USA
| | - Rebecca A Ferrer
- Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD, 20850, USA
| | - Robin C Vanderpool
- Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD, 20850, USA
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Zhu A, Xie H, Wei J, Wang M, Huang T, Mao H. Relationship between stigma and negative emotions among patients with Parkinson's disease: The mediating role of health literacy and family function. Geriatr Nurs 2025; 63:567-573. [PMID: 40334294 DOI: 10.1016/j.gerinurse.2025.04.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/21/2024] [Revised: 02/13/2025] [Accepted: 04/22/2025] [Indexed: 05/09/2025]
Abstract
BACKGROUND Parkinson's disease is a neurodegenerative disorder causing physical and psychological challenges. Stigma exacerbates negative emotions, resulting in anxiety and depression, as well as undermining self-perception and social participation. Health literacy aids in disease management, and family function plays a crucial supportive role. However, the interplay between these variables remains underexplored. OBJECTIVE To examine the chain mediating effects of health literacy and family function between stigma and negative emotions in patients with Parkinson's disease. METHODS This study adopted a cross-sectional design, recruiting eligible patients from a tertiary hospital in Guangzhou, China. A total of 245 participants completed questionnaires on stigma, health literacy, family function and negative emotions. Statistical analyses were performed using Spearman's correlation and mediation effect analysis. RESULTS Negative emotions were positively correlated with stigma (β = 0.584) and inversely associated with health literacy (β = -0.258) and family function (β = -0.144). Mediation effect analysis showed that the mediating effects of health literacy, family function, and their combined effects on the relationship between stigma and negative emotions were 0.033, 0.020, and 0.008, respectively, accounting for 8.89%, 5.39%, and 2.16% of the total effect. CONCLUSIONS Stigma in patients with Parkinson's disease not only directly affects negative emotions but also indirectly influences them through health literacy and family function.
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Affiliation(s)
- Aoxue Zhu
- Department of Nursing, Zhujiang Hospital, Southern Medical University, Guangzhou 510282, China; School of Nursing, Southern Medical University, Guangzhou 510515, China
| | - Huiling Xie
- Department of Geriatric Medicine, Zhujiang Hospital, Southern Medical University, Guangzhou 510505, China
| | - Juan Wei
- Department of Neurology, Zhujiang Hospital, Southern Medical University, Guangzhou 510282, China
| | - Mei Wang
- Department of Oncology, Zhujiang Hospital, Southern Medical University, Guangzhou 510282, China
| | - Tianrong Huang
- Department of Neurology, The Third Affiliated Hospital of Southern Medical University, Guangzhou 510630, China
| | - Huina Mao
- Department of Nursing, Zhujiang Hospital, Southern Medical University, Guangzhou 510282, China.
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Liu X, Wen S, Wu D. The mediating roles of family care and self-efficacy between stigma and social alienation among colorectal cancer survivors. Sci Rep 2025; 15:15312. [PMID: 40312451 PMCID: PMC12046019 DOI: 10.1038/s41598-025-99852-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/07/2024] [Accepted: 04/23/2025] [Indexed: 05/03/2025] Open
Abstract
To investigate the mediating role of family care and self-efficacy between stigma and social alienation among colorectal cancer survivors. In a cross-sectional study, 357 colorectal cancer survivors were recruited in northern China. The General Alienation Scale, Social Impact Scale, Family Care Index Questionnaire, and General Self-efficacy Scale were used to conduct the survey, and the mediation model was constructed and tested. Data were statistically analyzed using SPSS 25.0 software. Colorectal cancer survivors' social alienation was positively correlated with stigma (r = .481), and negatively correlated with family care (r = -.514)、and self-efficacy (r = -.506). Family care and self-efficacy both partially mediated the relationship between stigma and social alienation, with mediator effect values of 0.10 and 0.12, and the two consecutive paths were chained together, with a mediator effect of 0.02. Colorectal cancer survivors' stigma and social alienation are at a moderate level, and the stigma can directly and indirectly contribute to social alienation through family care and self-efficacy. Healthcare professionals can take targeted interventions to improve patients' family care and self-efficacy and reduce their social alienation, to promote the social integration of colorectal cancer survivors and improve the quality of life.
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Affiliation(s)
- Xian Liu
- Department of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, 121001, Liaoning Province, China
| | - Shuang Wen
- Department of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, 121001, Liaoning Province, China
| | - Dandan Wu
- Department of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, 121001, Liaoning Province, China.
- Department of Gastroenterology, The First Affiliated Hospital of Jinzhou Medical University, Renmin Street, No.2, Guta District, Jinzhou City, 121000, Liaoning Province, China.
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Wang F, Hengudomsub P, Chantamit-o-pas C. Factors related to stigma among patients with cervical cancer having chemotherapy after surgery in China: A cross-sectional study. BELITUNG NURSING JOURNAL 2025; 11:194-204. [PMID: 40256383 PMCID: PMC12006815 DOI: 10.33546/bnj.3706] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/31/2024] [Revised: 11/30/2024] [Accepted: 02/17/2025] [Indexed: 04/22/2025] Open
Abstract
Background Stigma is a significant issue among patients with cervical cancer undergoing postoperative chemotherapy, yet the factors contributing to stigma are not well understood. While research has explored the relationships between self-efficacy, illness perception, self-esteem, social support, and stigma, fewer studies have focused on Chinese patients, and even fewer have specifically examined stigma within this population. Objective This study aimed to describe stigma and assess its association with self-efficacy, self-esteem, illness perception, and social support in postoperative chemotherapy patients diagnosed with cervical cancer. Methods A total of 132 participants were recruited from the gynecology department of Wenzhou Medical University's First Affiliated Hospital using a random sampling technique. Data were collected between December 2023 and April 2024 using validated instruments. Descriptive statistics and Spearman's rank correlation were used for data analysis. Results The average stigma score was 76.3 (SD = 10.84), indicating a high level of stigma. Self-efficacy, self-esteem, illness perception, and social support were negatively correlated with stigma (r = -0.085, r = -0.158, r = -0.254, r = -0.238, all p <0.05). Conclusion All participants experienced significant stigma. The negative correlations found between stigma and self-efficacy, self-esteem, illness perception, and social support offer a theoretical basis for developing nursing interventions to reduce stigma in these patients.
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Affiliation(s)
- Fanglin Wang
- Faculty of Nursing, Burapha University, Chon Buri, 20131, Thailand
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Picón-Jaimes YA, Lozada-Martinez ID, Tosas MR, Tiraboschi J, Fiorillo-Moreno O, Bermúdez V. What Has Been Studied About Attitudes and Social Stigma Towards HIV/AIDS? A Global Bibliometric Study with Correlations on Global Health HIV-Related Indicators. Healthcare (Basel) 2025; 13:891. [PMID: 40281840 PMCID: PMC12027422 DOI: 10.3390/healthcare13080891] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/21/2024] [Revised: 01/03/2025] [Accepted: 02/10/2025] [Indexed: 04/29/2025] Open
Abstract
Introduction: This study aimed to assess, through health metrics and bibliometric analysis, the global research on attitudes and social stigma of people living with HIV/AIDS and to identify research findings, gaps, and future directions. Methods: A cross-sectional bibliometric study was conducted through a structured search in different databases. Fifteen thousand four hundred and ninety-six documents were found between 1981 and 2024. Results: 83.5% were original articles, and international co-authorship was 30.66%. Since 2000, there has been an increase in research on HIV/AIDS attitudes and social stigma. The United States is the most prolific country worldwide (n = 7837 publications; 50.5%), with the highest number of prolific institutions (n = 4/5), as well as the greatest influence and relevance in research (h-index 170). The most studied topics worldwide are social support and social psychology concerning homosexuality, middle age, and youth in people living with HIV/AIDS. There was no significant correlation between the volume of publications, countries' income levels, and the most prolific geographic regions with adult HIV prevalence, overall HIV incidence and prevalence, or antiretroviral therapy coverage in people living with HIV (p > 0.05 for all cases). Conclusions: Over the past two decades, research has shifted from human rights, legal rights, and ethics to attitudes toward healthcare, with the recent interest in pre-exposure prophylaxis, gender minorities, and intersectional stigma. The absence of strong correlations between publications volume and global health HIV-related indicators underscores the necessity of translating evidence into actionable strategies to reduce stigma and improve health outcomes.
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Affiliation(s)
| | - Ivan David Lozada-Martinez
- Biomedical Scientometrics and Evidence-Based Research Unit, Department of Health Sciences, Universidad de la Costa, Barranquilla 080002, Colombia;
| | - Mar Rosàs Tosas
- Facultat de Ciències de la Salut Blanquerna, Universitat Ramon Llull, 08025 Barcelona, Spain;
| | - Juan Tiraboschi
- Unitat de VIH, Servei de Malalties Infeccioses, Hospital Universitari de Bellvitge-IDIBELL, Universitat de Barcelona, 08028 L’Hospitalet de Llobregat, Spain;
| | - Ornella Fiorillo-Moreno
- Clínica Iberoamérica, Barranquilla 080001, Colombia;
- Clínica El Carmen, Barranquilla 080001, Colombia
| | - Valmore Bermúdez
- Centro de Investigaciones en Ciencias de la Vida, Facultad de Ciencias de la Salud, Universidad Simón Bolívar, Barranquilla 080001, Colombia
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Xu J, Gao Z, Ji P, Ji Q, Song M, Chen Y, Sun H, Guo L, Zhang L. Relationship between psychological resilience and quality of life in cancer patients and the multiple mediating roles of stigma and self perceived burden. Sci Rep 2025; 15:12375. [PMID: 40210934 PMCID: PMC11985974 DOI: 10.1038/s41598-025-96460-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/01/2024] [Accepted: 03/28/2025] [Indexed: 04/12/2025] Open
Abstract
The goal of this study was to explore the impact of psychological resilience on the QOL of cancer patients and the multiple mediating roles of stigma and self-perceived burden. This study utilized a cross-sectional design. The study population consisted of 364 cancer patients selected by convenience sampling method between November 2022 and May 2023 in two tertiary hospitals in Jinzhou City, Liaoning Province. All participants volunteered to participate in the study and signed an informed consent form. Data were collected using questionnaires. The questionnaires included the General Information Questionnaire, the Psychological Resilience Scale, the Stigma Scale, the Self-Perceived Burden Scale, and the Quality of Life Questionnaire. SPSS 25.0 and PROCESS 3.5 macros were employed for description statistics and related analyses of the data, as well as multiple mediation effect tests. Psychological resilience directly affects QOL (β = 0.929, 95% CI 0.729-1.130) and indirectly through three mediating pathways: stigma (β = 0.275, 95% CI 0.154-0.398, 19.76% of total effect), self-perceived burden (β = 0.115, 95% CI 0.046-0.205, 8.26% of total effect), and both stigma and self-perceived burden (β = 0.073, 95% CI 0.029-0.132, 5.24% of total effect), accounting for 33.26% of the overall mediated effect. Stigma and self-perceived burden act as mediators in influencing psychological resilience and QOL of cancer patients. Enhancing psychological resilience and reducing stigma and self-perceived burden is crucial for improving their QOL.
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Affiliation(s)
- Jiashuang Xu
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Ziyun Gao
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Pengjuan Ji
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Qiqi Ji
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Miaojing Song
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Yian Chen
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China
| | - Hong Sun
- Liaoning Cancer Hospital & Institute, No. 44 Xiaoheyan Road, Dadong District, Shenyang, Liaoning Province, People's Republic of China
| | - Leilei Guo
- School of Nursing, Jinzhou Medical University, No. 40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, People's Republic of China.
| | - Lin Zhang
- Department of Internal Medicine Nursing, School of Nursing, Wannan Medical College, 22 Wenchang West Road, Higher Education Park, Wuhu City, An Hui Province, People's Republic of China.
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Mi B, Jin Y, Zheng M, Cheng H, Zhang J. Stigma, colorectal cancer knowledge and self-efficacy among colorectal cancer survivors: A cross-sectional study based on random forest analysis. Eur J Oncol Nurs 2025; 76:102858. [PMID: 40086202 DOI: 10.1016/j.ejon.2025.102858] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/08/2025] [Revised: 02/09/2025] [Accepted: 03/02/2025] [Indexed: 03/16/2025]
Abstract
PURPOSE To assess the stigma levels among colorectal cancer (CRC) survivors, identify determinants, examine correlations with CRC knowledge and self-efficacy, and quantify the relative influence of various contributing factors. METHODS In total, 301 CRC survivors were enrolled from a tertiary oncology center in southern China. The participants completed the Social Impact Scale (SIS), Bowel Cancer Awareness Measure (Bowel CAM), General Self-Efficacy Scale (GSES), and a demographic and disease-related questionnaire. The analytical framework included multiple linear regression to identify the factors influencing stigma, LASSO regression for variable refinement, and random forest modeling to construct hierarchies of factor importance. RESULTS Participants demonstrated moderate levels across all measures: stigma (54.63 ± 8.37), CRC knowledge (8.25 ± 4.74), and self-efficacy (26.81 ± 5.95). Multiple linear regression identified type of medical insurance, support from peers, unwillingness to accept colonoscopy, CRC knowledge, and self-efficacy as significant factors influencing stigma. Random forest analysis ranked factor importance by Gini index: self-efficacy (4366.41), support from peers (1618.03), CRC knowledge (1029.04), type of medical insurance (886.66), and unwillingness to accept colonoscopy (750.16). CONCLUSIONS Healthcare providers should pay more attention to stigma among CRC patients. Effective stigma reduction necessitates culturally-sensitive psychosocial interventions, including enhancing patients' confidence in managing their disease, strengthening professional-driven online popularization of science campaigns, and facilitating social support networks.
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Affiliation(s)
- Boya Mi
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Ying Jin
- School of Medical and Health Engineering, Changzhou University, Changzhou, China
| | - Meichun Zheng
- Department of Colorectal Surgery, Sun Yat-sen University Cancer Center, Guangzhou, China
| | - Hongtao Cheng
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - June Zhang
- School of Nursing, Sun Yat-sen University, Guangzhou, China.
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Zhang Y, Cao Y, Wang Y, Wang D, Ye H, Nie C. Stigma and self-perceived burden in postoperative liver cancer patients: the mediating role of financial toxicity. Front Psychiatry 2025; 16:1481752. [PMID: 40078523 PMCID: PMC11897049 DOI: 10.3389/fpsyt.2025.1481752] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/16/2024] [Accepted: 01/27/2025] [Indexed: 03/14/2025] Open
Abstract
Purpose To investigate the mediating effect of financial toxicity on stigma and self-perceived burden in patients with liver cancer after surgery. Methods Using a convenience sampling method, 236 postoperative liver cancer patients treated at a tertiary hospital in Nanjing from April 2024 to July 2024 were selected for the study. Questionnaires were administered, including a general information survey, the Social Impact Scale (SIS), the Self-Perceived Burden Scale for Cancer Patients (SPBS-CP), and the Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy Version 2 (COST-FACIT-V2). Data were analyzed using SPSS 22.0 for descriptive statistics, correlation analysis, and regression analysis. MPlus 8.3 was employed to examine the mediating effect of financial toxicity between stigma and self-perceived burden, and the Bootstrap method was used to test the significance of the mediation effect. Results The self-perceived burden score, stigma score, and financial toxicity score were (31.72 ± 7.52), (58.92 ± 8.69), and (18.62 ± 6.80), respectively. The financial toxicity and self-perceived burden were negatively correlated (r=-0.270,P=0.001). There was a positive correlation between stigma and self-perceived burden (r=0.586,P=0.000). Financial toxicity partially mediated the relationship between stigma and self-perceived burden, accounting for 4.84% of the total effect. Conclusion Stigma can influence the self-perceived burden of liver cancer patients through financial toxicity. Clinical nurses should prioritize alleviating patients' stigma while also paying close attention to their financial toxicity status, providing feasible assistance in a timely manner to reduce their self-perceived burden.
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Affiliation(s)
- Yue Zhang
- Department of Nursing, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, Nanjing, China
| | - Yiqin Cao
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, China
| | - Yanyan Wang
- Department of Nursing, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, Nanjing, China
| | - Di Wang
- Department of Vascular Surgery, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, Nanjing, China
| | - Hongfang Ye
- School of Nursing, Nanjing University of Chinese Medicine, Nanjing, China
| | - Chunlei Nie
- School of Humanities, Southeast University, Nanjing, China
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Hlodak J, Madarasova Geckova A, Carnakovic S, Feketeova E. What is it like to live with narcolepsy? A scoping review. Sleep Breath 2025; 29:93. [PMID: 39921771 PMCID: PMC11807074 DOI: 10.1007/s11325-025-03259-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/06/2024] [Revised: 01/23/2025] [Accepted: 01/27/2025] [Indexed: 02/10/2025]
Abstract
BACKGROUND Narcolepsy impacts quality of life (QoL) with its symptomatology in hobbies and everyday activities, work and productivity and has social and economic consequences. The aim of this review is to map and synthesize evidence about QoL in narcolepsy patients and to focus on research strategies and publications in the matter. METHODS A scoping review of articles published between 2014-2025. The initial search of WoS resulted in 7748 articles and 2583 in PubMed being screened for eligibility. Intervention, comorbidity, non-narcolepsy, prevalence and medical trials studies were excluded. We extracted data on bibliometric characteristics, research questions, sample and recruitment method, design, concepts and measures, and the main findings. Two independent reviewers did the screening and analyses. The analyzed data were consulted on with stakeholders to settle gaps, possibilities and directions for future research. This study followed the PRISMA-ScR guidelines. RESULTS Twenty papers were included in this study. There is an increasing trend in publishing studies focused on QoL in narcolepsy patients, but its spread is very limited across various audiences. Most of the studies assess the association of narcolepsy symptoms, treatment, mental health or nutritional status and QoL in narcolepsy patients. Most used was a questionnaire-based cross-sectional design comparing a control group vs narcolepsy patients recruited through regular follow up at a sleep clinic or national reference centers or patients' organization. CONCLUSION There is a need to spread knowledge beyond the neurology audience, to widen the scope of research beyond the burden of the symptoms and to employ explorative qualitative designs.
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Affiliation(s)
- Jan Hlodak
- Comenius University, Faculty of Social and Economic Sciences, Institute of Applied Psychology, Bratislava, Slovakia.
| | - Andrea Madarasova Geckova
- Comenius University, Faculty of Social and Economic Sciences, Institute of Applied Psychology, Bratislava, Slovakia
- University of Pavol Jozef Safarik, Medical faculty, Institute of Health Psychology and Research Methodology, Kosice, Slovakia
| | - Simona Carnakovic
- University of Pavol Jozef Safarik, Faculty of Medicine, 1st Dept. of Psychiatry, Košice, Slovakia
- University Hospital of L. Pasteur, Kosice, Slovakia
| | - Eva Feketeova
- University Hospital of L. Pasteur, Kosice, Slovakia
- University of Pavol Jozef Safarik, Faculty of Medicine, Dept. of Neurology, Košice, Slovakia
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Afolaranmi TO, Chaplin B, Zoakah AI, Kanki PJ. HIV-related stigma among young men who have sex with men in HIV care in Plateau State Nigeria. Front Public Health 2025; 13:1473369. [PMID: 39911224 PMCID: PMC11794070 DOI: 10.3389/fpubh.2025.1473369] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/30/2024] [Accepted: 01/02/2025] [Indexed: 02/07/2025] Open
Abstract
Background HIV-related stigma is often expressed as irrational behaviors, negative attitudes, and unfavorable judgments toward people living with or at risk of HIV which remains very common in low- and middle-income countries including Nigeria. This study assessed the level of HIV-related stigma and its associated factors among Young Men who have Sex with Men (YMSM) in HIV care. Methodology This was a cross-sectional study conducted among 122 YMSM to assess the level of HIV-related stigma and its associated factors among YMSM in HIV care using respondent driven sampling between July 2023 and April 2024. Quantitative method of data collection was employed and SPSS version 23 was used for data analysis. A p-value of ≤ 0.05 was considered statistically significant. Results The mean age of the study participants was 22.2 ± 2.0 years with 56 (45.6%) being 22 years and below. The total HIV- related stigma score for the participants was 121.9 ± 18.8 with high-level of stigma reported among 40 (32.8%) of the participants. Significant variation in the mean total HIV-related stigma score was found with duration on HIV treatment with those who had been on treatment for >3 years having a mean score of 117.8 ± 15.2 compared to 110.3 ± 20.1 for those who had been on treatment for <2 years (mean difference: -7.50; 95% Confidence interval: -14.45, -5.51; p = 0.035). Conclusion This study found a high level of HIV-related stigma among the YMSM in HIV care which is significantly influenced by the duration of time in HIV care.
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Affiliation(s)
- Tolulope O. Afolaranmi
- Department of Community Medicine, University of Jos, Jos, Plateau, Nigeria
- Department of Global Health and Population, Harvard T.H Chan School of Public Health, Boston, MA, United States
| | - Beth Chaplin
- Department of Immunology and Infectious Diseases, Harvard T.H Chan School of Public Health, Boston, MA, United States
| | - Ayuba I. Zoakah
- Department of Community Medicine, University of Jos, Jos, Plateau, Nigeria
| | - Phyllis J. Kanki
- Department of Immunology and Infectious Diseases, Harvard T.H Chan School of Public Health, Boston, MA, United States
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Xu J, Li Q, Gao Z, Ji P, Ji Q, Song M, Chen Y, Sun H, Wang X, Zhang L, Guo L. Impact of cancer-related fatigue on quality of life in patients with cancer: multiple mediating roles of psychological coherence and stigma. BMC Cancer 2025; 25:64. [PMID: 39794768 PMCID: PMC11721594 DOI: 10.1186/s12885-025-13468-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/18/2024] [Accepted: 01/07/2025] [Indexed: 01/13/2025] Open
Abstract
OBJECTIVE The goal of this current research was to explore the impact of cancer-related fatigue on the quality of life among patients with cancer, as well as the multiple mediating roles of psychological coherence and stigma. METHODS This study utilized a cross-sectional design. A questionnaire was administered between November 2022 and May 2023 to 364 patients with cancer in two tertiary hospitals in Jinzhou City, Liaoning Province, China. The questionnaires included the General Information Questionnaire, Cancer-Related Fatigue Questionnaire, Psychological Coherence Scale, Stigma Scale, and Quality of Life Questionnaire. SPSS 25.0 and PROCESS 3.5 macros were used for descriptive statistics and correlation analysis of the data, as well as multiple mediation effect tests. RESULTS Cancer-related fatigue directly affects quality of life (β = -0.950, 95% CI = -1.138 to -0.763) and indirectly through three mediators: psychological coherence (β = -0.172, 12.58% of total effect), stigma (β = -0.193, 14.12% of total effect), and both psychological coherence and stigma (β = -0.052, 3.80% of total effect), totaling a 30.50% mediating effect. CONCLUSION Overall, psychological coherence and stigma may play an important mediating role between cancer-related fatigue and quality of life in patients with cancer. This suggests that alleviating cancer-related fatigue, while enhancing psychological coherence and reducing stigma, could be effective strategies for improving patients' quality of life. Therefore, healthcare professionals and related professionals should pay attention to and adopt effective interventions to alleviate cancer-related fatigue, enhance psychological coherence, and reduce stigma, thereby contributing to the overall well-being and quality of life of patients with cancer.
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Affiliation(s)
- Jiashuang Xu
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Qiang Li
- Department of Traditional Chinese Medicine and Dermatology, No. 968 Hospital of the People's Liberation Army Joint Logistics Support Force, Jinzhou, Liaoning Province, P.R. China
| | - Ziyun Gao
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Pengjuan Ji
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Qiqi Ji
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Miaojing Song
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Yian Chen
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China
| | - Hong Sun
- Liaoning Cancer Hospital & Institute, No.44 Xiaoheyan Road, Dadong District, Shenyang, Liaoning Province, P.R. China
| | - Xin Wang
- Department of Nursing, Huaian Hospital of Huaian City, No. 19, Shanyang Avenue, Huai'an City, Jiangsu Province, P.R. China
| | - Lin Zhang
- Department of Internal Medicine Nursing, School of Nursing, Wannan Medical College, 22 Wenchang West Road, Higher Education Park, Wuhu City, An Hui Province, P.R. China.
| | - Leilei Guo
- School of Nursing, Jinzhou Medical University, No.40, Section 3, Songpo Road, Linghe District, Jinzhou City, Liaoning Province, P.R. China.
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Gonzales L, Saperstein AM, Jones N, Erlich MD, Medalia A. Perceived Stigma Toward Cognitive Impairment Among People With Schizophrenia. Psychiatr Serv 2025; 76:86-89. [PMID: 39091170 DOI: 10.1176/appi.ps.20240106] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 08/04/2024]
Abstract
OBJECTIVE Stigma toward schizophrenia spectrum disorders is pervasive and negatively influences service access and delivery. Cognitive impairment associated with schizophrenia (CIAS) is common, but its association with stigma is unknown. In this study, the authors examined whether individuals with CIAS receiving cognitive remediation treatment report experiencing CIAS-related stigma and sought to establish associations between CIAS-related stigma and recovery-relevant outcomes. METHODS Data from 48 individuals with schizophrenia spectrum diagnoses were drawn from a larger study evaluating cognitive remediation. Participants completed measures of CIAS-related stigma, internalized mental illness stigma, self-perceived cognitive impairment, cognitive performance, and interviewer-rated quality of life. RESULTS CIAS-related stigma was commonly reported and significantly positively associated with internalized stigma and self-perceived cognitive impairment. CIAS-related stigma was also significantly negatively associated with motivation to engage in goal-directed behavior and daily activities. CONCLUSIONS CIAS-related stigma exists and warrants additional exploration with regard to implications for psychiatric service delivery.
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Affiliation(s)
- Lauren Gonzales
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons, New York City, and New York State Office of Mental Health, Albany (Gonzales, Saperstein, Erlich, Medalia); School of Social Work, University of Pittsburgh, Pittsburgh (Jones)
| | - Alice M Saperstein
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons, New York City, and New York State Office of Mental Health, Albany (Gonzales, Saperstein, Erlich, Medalia); School of Social Work, University of Pittsburgh, Pittsburgh (Jones)
| | - Nev Jones
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons, New York City, and New York State Office of Mental Health, Albany (Gonzales, Saperstein, Erlich, Medalia); School of Social Work, University of Pittsburgh, Pittsburgh (Jones)
| | - Matthew D Erlich
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons, New York City, and New York State Office of Mental Health, Albany (Gonzales, Saperstein, Erlich, Medalia); School of Social Work, University of Pittsburgh, Pittsburgh (Jones)
| | - Alice Medalia
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons, New York City, and New York State Office of Mental Health, Albany (Gonzales, Saperstein, Erlich, Medalia); School of Social Work, University of Pittsburgh, Pittsburgh (Jones)
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14
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Cui C, Wang L. Mediating effect of social constraints in the association between stigma and depressive symptoms in Chinese breast cancer patients. BMC Psychiatry 2024; 24:923. [PMID: 39696252 DOI: 10.1186/s12888-024-06379-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/14/2024] [Accepted: 12/05/2024] [Indexed: 12/20/2024] Open
Abstract
PURPOSE The present study aimed to investigate the effect of stigma on depressive symptoms and explore the mediating role of social constraints between stigma and depressive symptoms in Chinese breast cancer (BC) patients. METHODS A cross-sectional design was conducted in China from December 2020 to July 2021. Out of 256 participants, 222 BC patients completed the questionnaires composed of demographic and clinical information, Patient Health Questionnaire-9 (PHQ-9), Social Impact Scale (SIS), and 15-item Social Constraints Scale (SCS-15). The hierarchical regression analysis was adopted to explore the associations of stigma and social constraints with depressive symptoms and the mediating role of social constraints. RESULTS Approximately 20% of participants reported having depressive symptoms in Chinese BC patients. The indirect effect of stigma on depressive symptoms through social constraints was significant (a*b = 0.24, 95%CI = 0.15-0.33). When the mediator was controlled for, the direct impact of stigma on depressive symptoms was also significant (c'=0.16, p < 0.01). CONCLUSION The current study suggested that stigma may contribute to developing depressive symptoms by increasing social constraints in Chinese BC patients. Interventions based on reducing stigma and social constraints should be conducted to improve mental health in BC patients.
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Affiliation(s)
- ChunYing Cui
- School of Humanities and Management, Wannan Medical College, Wuhu, Anhui, 241002, PR China.
| | - Lie Wang
- School of Public Health, China Medical University, No.77 Puhe Road, Shenyang North New Area, Shenyang, Liaoning, 110122, PR China
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15
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Shi D, Li R, Chen P, Zhong J, Wang K, Wang D, Zhu H. The mediating effect of stigma on the relationship between fear of disease progression and social alienation in patients with haematological malignancies. Hematology 2024; 29:2416723. [PMID: 39466116 DOI: 10.1080/16078454.2024.2416723] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/09/2024] [Accepted: 10/08/2024] [Indexed: 10/29/2024] Open
Abstract
OBJECTIVE To explore the mediating effect of shame in patients with malignant haematological diseases between fear of disease progression and social alienation. METHODS Recruiting 310 patients with haematological malignancies as the research population, the convenience sampling method was used to investigate the general information questionnaire, the fear of disease progression scale, the social influence scale and the general alienation scale. RESULTS The patients with haematological malignancies scored (36.02 ± 9.74) points for fear of disease progression, (58.02 ± 9.52) points for stigma and (31.31 ± 5.85) points for social alienation. Social alienation in patients with haematologic malignancies was positively correlated with stigma (r = 0.500, P < 0.01) and fear of disease progression (r = 0.424, P < 0.01), and fear of disease progression was also positively correlated with stigma (r = 0.405, P < 0.01). Bootstrap test results showed that the mediating effect of stigma on the relationship between fear of disease progression and social alienation in patients with haematological malignancies was 0.159, accounting for 37.5% of the total effect. CONCLUSION The sense of shame plays an intermediary role between fear of disease progression and social alienation in patients with malignant haematological diseases. Clinical nurses should pay attention to the current situation of fear and shame in patients with such diseases and take appropriate intervention measures to reduce the occurrence of negative emotions such as social alienation.
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Affiliation(s)
- Dan Shi
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - Run Li
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - PeiXin Chen
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - JiaQing Zhong
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - KuiLi Wang
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - Dan Wang
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
| | - HuiJuan Zhu
- Special Medical Service Center, Zhujiang Hospital of Southern Medical University, Guangzhou, People's Republic of China
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16
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Gonzales L, Saperstein AM, Qian M, Gorecki A, Medalia A. Psychiatric and functional correlates of stigma associated with cognitive impairment in schizophrenia. Psychiatry Res 2024; 342:116233. [PMID: 39461092 PMCID: PMC11617260 DOI: 10.1016/j.psychres.2024.116233] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/16/2024] [Revised: 10/08/2024] [Accepted: 10/13/2024] [Indexed: 10/29/2024]
Abstract
Schizophrenia is the most strongly stigmatized psychiatric diagnosis, with negative stereotypes including assumptions of incompetence and inability to recover. Individuals with cognitive impairment associated with schizophrenia (CIAS) have reported stigma experiences, suggesting that CIAS carries stigma in addition to the stigma associated with schizophrenia as a diagnostic label. While research has established that mental illness stigma more generally is linked with poor psychiatric and functional outcomes, no research has explored correlates of CIAS stigma. This study evaluated cognitive, psychiatric, and functional correlates of CIAS stigma among 54 individuals with schizophrenia spectrum disorders participating in a cognitive remediation trial. Participants with greater estimated cognitive decline reported higher levels of CIAS stigma experiences. Participants who reported higher levels of CIAS stigma also scored higher on a measure of depressive symptom severity. No significant associations were found between CIAS stigma and positive and negative psychosis symptoms or general psychopathology ratings. CIAS stigma was not associated with performance-based functional capacity or ratings of community functioning. Findings suggest that CIAS stigma is linked with the degree of cognitive decline and depressive symptom severity among individuals with schizophrenia spectrum disorders. Additional research is needed to elucidate directionality and the relationship between CIAS stigma and functioning outcomes.
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Affiliation(s)
- Lauren Gonzales
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, New York, NY, United States; New York State Office of Mental Health, New York, NY, United States.
| | - Alice M Saperstein
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, New York, NY, United States; New York State Office of Mental Health, New York, NY, United States
| | - Min Qian
- Department of Biostatistics, Columbia University Mailman School of Public Health, New York, NY, United States
| | - Adam Gorecki
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, New York, NY, United States
| | - Alice Medalia
- Department of Psychiatry, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, New York, NY, United States; New York State Office of Mental Health, New York, NY, United States
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17
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Roicke A, Esser P, Hornemann B, Ernst J. [Pain-related stigma in patients with breast, colon, prostate or lung cancer : Results of a bicentric register-based cross-sectional study]. Schmerz 2024; 38:390-399. [PMID: 37710022 PMCID: PMC11576764 DOI: 10.1007/s00482-023-00752-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/21/2022] [Revised: 04/22/2023] [Accepted: 06/20/2023] [Indexed: 09/16/2023]
Abstract
BACKGROUND Studies on cancer patients show a moderately high relevance of perceived stigmatization. However, no studies have explored the perceived stigmatization in relation to cancer-associated pain. In this work, we analysed the relationship between pain and perceived stigmatization across a large sample of four major cancer entities. METHODS Quantitative data of 858 patients (45.6% women, mean age 60.7 years) with breast, bowel, lung and prostate cancer were evaluated in a register-based, bicentric study. Perceived stigmatization was measured using the social impact cale (SIS-D), including a total score and four subscales. Pain was assessed with the brief pain inventory (BPI). The data were analysed using correlation und multiple regression with various sociodemographic and medical predictors. RESULTS Of all 858 cancer patients, those with lung and breast cancer were characterized by the greatest pain. The intensity of the pain was a predictor of the perceived stigma in patients with breast and colorectal cancer. In addition, younger age was also a predictor for perceived stigmatization. A good quality of life resulted as a protective factor. The final models showed a high goodness of the fit (corr. R2 > 0.35), except for the lung cancer patients. CONCLUSIONS Our findings support the assumption that the experience of pain can have an impact on the perceived stigmatization of cancer patients. Depression might influence the perceived stigmatization. Therefore, this group of patients should receive special attention and psycho-oncological care in clinical practice. Further research on the course and mechanisms of action of pain-related perceived stigmatization is also required.
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Affiliation(s)
- A Roicke
- Abteilung Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig AöR, Philipp-Rosenthal-Str. 55, Haus W, 04103, Leipzig, Deutschland.
| | - P Esser
- Abteilung Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig AöR, Philipp-Rosenthal-Str. 55, Haus W, 04103, Leipzig, Deutschland
| | - B Hornemann
- Universitäts KrebsCentrum (UCC), Psychoonkologie, Universitätsklinikum Carl Gustav Carus, Dresden, Deutschland
| | - J Ernst
- Abteilung Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig AöR, Philipp-Rosenthal-Str. 55, Haus W, 04103, Leipzig, Deutschland
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18
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Lin L, Lin H, Zhou R, Liu B, Liu K, Jiang R. Surviving and thriving: Assessing quality of life and psychosocial interventions in mental health of head and neck cancer patients. Asian J Surg 2024:S1015-9584(24)02651-4. [PMID: 39613637 DOI: 10.1016/j.asjsur.2024.11.048] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/05/2024] [Revised: 10/22/2024] [Accepted: 11/07/2024] [Indexed: 12/01/2024] Open
Abstract
The quality of life of head and neck cancer patients is affected by various factors, including the disease itself, treatment side effects, and changes in appearance, leading to a range of mental health issues such as anxiety, depression, and adjustment disorders. These mental health problems not only reduce the patients' quality of life but may also negatively impact treatment outcomes and survival rates. Therefore, it is particularly important to assess and intervene in the mental health of head and neck cancer patients. This review focuses on the common mental health issues in these patients and emphasizes the importance of detailed assessment. By using various assessment tools, healthcare professionals can accurately identify patients' mental states and provide appropriate support and interventions. The article discusses various effective mental health interventions aimed at improving patients' psychological adaptation, reducing psychological stress, and enhancing quality of life. These interventions include cognitive-behavioral adjustments, family support, and mindfulness practices. In addition, the article mentions the potential of artificial intelligence technology in improving patients' quality of life, particularly in treatment planning, patient education, and mental health interventions. In summary, comprehensive management and intervention of the mental health of head and neck cancer patients are crucial to improving their quality of life and treatment outcomes. Future research needs to further explore effective psychological intervention methods and integrate them into the overall treatment plan for head and neck cancer patients.
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Affiliation(s)
- Liqing Lin
- Kangda College of Nanjing Medical University, Lianyungang, Jiangsu, China
| | - Hao Lin
- State Key Laboratory of Oral & Maxillofacial Reconstruction and Regeneration, Key Laboratory of Oral Biomedicine Ministry of Education, Hubei Key Laboratory of Stomatology, School & Hospital of Stomatology, Wuhan University, Wuhan, China
| | - Renbin Zhou
- State Key Laboratory of Oral & Maxillofacial Reconstruction and Regeneration, Key Laboratory of Oral Biomedicine Ministry of Education, Hubei Key Laboratory of Stomatology, School & Hospital of Stomatology, Wuhan University, Wuhan, China
| | - Bing Liu
- State Key Laboratory of Oral & Maxillofacial Reconstruction and Regeneration, Key Laboratory of Oral Biomedicine Ministry of Education, Hubei Key Laboratory of Stomatology, School & Hospital of Stomatology, Wuhan University, Wuhan, China; Department of Oral & Maxillofacial Head Neck Oncology, School & Hospital of Stomatology, Wuhan University, Wuhan, China
| | - Kaige Liu
- Qilu Hospital of Shandong University, Jinnan, Shandong, China.
| | - Ronghua Jiang
- Department of Pediatric Dentistry, School and Hospital of Stomatology, Cheeloo College of Medicine, Shandong University & Shandong Key Laboratory of Oral Tissue Regeneration & Shandong Engineering Research Center of Dental Materials and Oral Tissue Regeneration & Shandong Provincial Clinical Research Center for Oral Diseases, Jinnan, Shandong, China.
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Flores-Juárez J, Galindo-Vázquez O, Ortega-Andeane P, Fresán-Orellana A, Montero-Pardo X, Estapé T, Arroyo-Hernández M, Cabrera-Miranda LA, Arrieta O. Stigma in Mexican patients with Lung Cancer: Psychometric Properties of the Cataldo Lung Cancer Stigma Scale (CLCSS) - Brief version. Palliat Support Care 2024:1-7. [PMID: 39563195 DOI: 10.1017/s1478951524001263] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/21/2024]
Abstract
INTRODUCTION Stigma in lung cancer patients may be associated with various negative outcomes such as increased psychosocial symptoms, severity of physical symptoms, and may act as a barrier to medical help-seeking behavior. The Cataldo Lung Cancer Stigma Scale (CLCSS) is one of the most widely used instruments for assessing health-related stigma in lung cancer patients. OBJECTIVES To determine the psychometric properties of the CLCSS in a Mexican sample of lung cancer patients. METHODS A non-experimental, instrumental design was employed, using non-probabilistic sampling based on availability. The sample included 265 lung cancer patients. Confirmatory Factor Analysis (CFA) was conducted to assess construct validity, and Cronbach's alpha and McDonald's Omega were used for internal consistency and test-retest reliability, respectively, through Pearson correlation coefficient. RESULTS The 17-item version yielded a model with 4 factors (stigma and shame, social isolation, discrimination, and smoking) explaining 50.74% of the variance, with adequate values of internal consistency and test-retest reliability. SIGNIFICANCE OF RESULTS The Mexican version of the CLCSS is culturally appropriate, brief, psychometrically valid, and reliable for assessing health-related stigma in Mexican lung cancer patients.
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Affiliation(s)
- Joel Flores-Juárez
- Facultad de Psicología, Universidad Nacional Autónoma de México, Mexico City, México
- Servicio de Psicooncología, Unidad de Investigación y Desarrollo de la Psicooncología, Instituto Nacional de Cancerología, INCan, Ciudad de México, México
- Unidad Funcional de Oncología Torácica, Instituto Nacional de Cancerología, INCan, Ciudad de México, Mexico
| | - Oscar Galindo-Vázquez
- Servicio de Psicooncología, Unidad de Investigación y Desarrollo de la Psicooncología, Instituto Nacional de Cancerología, INCan, Ciudad de México, México
| | | | - Ana Fresán-Orellana
- Subdirección de Investigaciones Clínicas, Instituto Nacional de Psiquiatría Ramón de la Fuente Muñiz, Ciudad de México, México
| | | | - Tania Estapé
- Coordinadora de Psicooncología de la Fundación FEFOC, Universidad de Barcelona, Barcelona, España
| | - Marisol Arroyo-Hernández
- Unidad Funcional de Oncología Torácica, Instituto Nacional de Cancerología, INCan, Ciudad de México, Mexico
| | | | - Oscar Arrieta
- Dirección General, Instituto Nacional de Cancerología, INCan, Ciudad de México, Mexico
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20
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Pearl RL, Li Y, Groshon LC, Hernandez M, Saunders D, Sheynblyum M, Driscoll KA, Gelfand JM, Manavalan P, Montanez-Wiscovich M, Pereira DB, Puhl RM, Wadden TA, Waxenberg LB, Westen SC, Lou XY. Measuring internalized health-related stigma across health conditions: development and validation of the I-HEARTS Scale. BMC Med 2024; 22:435. [PMID: 39379928 PMCID: PMC11463042 DOI: 10.1186/s12916-024-03661-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/01/2024] [Accepted: 09/26/2024] [Indexed: 10/10/2024] Open
Abstract
BACKGROUND Health-related stigma and its internalization among individuals with chronic health conditions contribute to impaired mental and physical health and quality of life. Research on health-related stigma has been siloed, with disease-specific measures that may not capture the experiences of individuals with multiple health conditions and that prevent comparisons across health conditions. The current study aimed to develop and test a transdiagnostic measure of internalized health-related stigma for use among adults with different physical health conditions. METHODS An existing measure of internalized mental health stigma was adapted to assess stigma due to chronic physical health conditions following COSMIN procedures, with input from advisory boards of community members living with a range of stigmatized health conditions (obesity, type 1 and type 2 diabetes, skin diseases, HIV, chronic pain, and cancers) and of health professionals who specialized in these conditions. The new Internalized Health-Related Stigma (I-HEARTS) Scale was tested in an online sample of 300 adults with these health conditions, recruited from ResearchMatch. Additional psychosocial measures of mental health and quality of life were administered, and participants provided information about their health conditions and demographic characteristics. Exploratory factor analysis and tests of reliability and validity were conducted to determine the psychometric properties of the I-HEARTS Scale, and k-means clustering and receiver of characteristic curve analysis were used to determine a clinically meaningful cutoff score indicating high levels of internalized stigma. RESULTS Factor analysis results yielded a 25-item scale with a 3-factor solution, with subscales of Perceived and Anticipated Stigma, Stereotype Application and Self-Devaluation, and Stigma Resistance. Psychometric properties for internal consistency, inter-item and item-total correlations, and test-retest reliability were strong. Certain demographics (e.g., younger age) and characteristics related to health conditions (e.g., greater symptom severity) were associated with higher levels of internalized stigma. I-HEARTS Scale scores correlated moderately to strongly with related but distinct psychosocial measures, and a cutoff score of 3.40 or higher on the 1-7 rating scale was determined to indicate clinically meaningful levels of internalized stigma. CONCLUSIONS The I-HEARTS Scale is a reliable and valid measure for the assessment of internalized health-related stigma among adults with varied stigmatized chronic health conditions. STUDY PRE-REGISTRATION: https://osf.io/84c5d/?view_only=87238512f6d6475c87f8f64280a8a15f .
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Affiliation(s)
- Rebecca L Pearl
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA.
| | - Yulin Li
- Department of Biostatistics, College of Medicine and College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Laurie C Groshon
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Marian Hernandez
- Department of Psychology, San Diego State University, San Diego, CA, USA
| | - Danielle Saunders
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Miriam Sheynblyum
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Kimberly A Driscoll
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Joel M Gelfand
- Department of Dermatology and Department of Biostatistics, Epidemiology and Informatics, Center for Clinical Sciences in Dermatology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
| | - Preeti Manavalan
- Department of Medicine, College of Medicine, University of Florida, Gainesville, FL, USA
| | | | - Deidre B Pereira
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Rebecca M Puhl
- Department of Human Development & Family Sciences, University of Connecticut, Storrs, CT, USA
| | - Thomas A Wadden
- Center for Weight and Eating Disorders, Department of Psychiatry, University of Pennsylvania Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Lori B Waxenberg
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Sarah C Westen
- Department of Clinical and Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Xiang-Yang Lou
- Department of Biostatistics, College of Medicine and College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
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Basinger ED, Cameron SJ, Allen G. Stigma, Self-Care, and Intuitive Eating in Black Americans with Type 2 Diabetes. J Racial Ethn Health Disparities 2024; 11:3162-3171. [PMID: 37626193 DOI: 10.1007/s40615-023-01772-6] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/09/2023] [Revised: 07/20/2023] [Accepted: 08/18/2023] [Indexed: 08/27/2023]
Abstract
Type 2 diabetes is prevalent among Black Americans. Stigma associated with type 2 diabetes, both in general and specific to weight, is damaging to self-care, which is crucial for the effective management of diabetes. Family relationships may buffer the negative impact of stress, especially among Black Americans who have historically relied on informal support networks. Our goal was to investigate how type 2 diabetes stigma (H1) and weight stigma (H2) were related to self-care and intuitive eating - a non-restrictive approach to nutrition; H3 predicted that family relationship satisfaction would moderate the relationships predicted in H1 and H2. Black Americans diagnosed with type 2 diabetes (N = 225) were recruited via Qualtrics panels to complete an online survey of self-report measures. We used multiple linear regression to test our hypotheses. Both chronic illness and weight stigma were related as predicted to one subscale of intuitive eating (eating for physical hunger). Our moderation analyses revealed that family relationship satisfaction was protective against the harms of stigma at moderate to high levels. Intuitive eating is a promising non-restrictive treatment option for type 2 diabetes.
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Affiliation(s)
- Erin D Basinger
- Department of Communication Studies, University of North Carolina at Charlotte, 9201 University City Boulevard, Charlotte, NC, 28223, USA.
| | - Shanice Jones Cameron
- Department of Communication Studies, University of North Carolina at Charlotte, 9201 University City Boulevard, Charlotte, NC, 28223, USA
| | - Gracie Allen
- Department of Communication Studies, University of North Carolina at Charlotte, 9201 University City Boulevard, Charlotte, NC, 28223, USA
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Huang B, Liu G, Huang J, He S, Li W, Xiao S, Song X, Chen H. The impact of discharge readiness on post-traumatic growth in patients after thyroid cancer surgery: the mediating role of sickness-related stigma. Front Oncol 2024; 14:1361036. [PMID: 39286012 PMCID: PMC11403406 DOI: 10.3389/fonc.2024.1361036] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/24/2023] [Accepted: 08/07/2024] [Indexed: 09/19/2024] Open
Abstract
Objective To investigate the relationship between post-traumatic growth, morbidity stigma and readiness for discharge in post-operative thyroid cancer patients. Methods 422 post-operative thyroid cancer patients from three tertiary care hospitals in Hunan and Tianjin were surveyed using the General Information Questionnaire, the Post-traumatic Growth Scale, the Readiness for Discharge Scale, and the Social Influence Scale. Results Discharge readiness positively predicted the level of post-traumatic growth in thyroid cancer patients (P < 0.01), and morbidity stigma negatively predicted post-traumatic growth (P < 0.01), with morbidity stigma playing a mediated role between discharge readiness and post-traumatic growth. Conclusions Readiness for discharge can positively predict post-traumatic growth, and morbidity stigma plays a mediating role between readiness for discharge and post-traumatic growth. It is suggested that clinical and nursing staff should strengthen patients' discharge readiness guidance and education, help patients and their families establish an effective feedback mechanism for disease condition and psychological cognitive condition, focus on reducing patients' sense of shame, and improve patients' physical and mental health.
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Affiliation(s)
- Bin Huang
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
- Xiangya Hospital of Central South University, Central South University, Changsha, Hunan, China
| | - Guangzhi Liu
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
| | - Jiaqian Huang
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
| | - Susu He
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
| | - Wen Li
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
| | - Shanshan Xiao
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
| | - Xiaohua Song
- Hunan Cancer Hospital/The Affiliated Cancer Hospital of Xiangya School of Medicine, Central South University, Changsha, Hunan, China
| | - Hongtao Chen
- School of Nursing, Hunan University of Chinese Medicine, Changsha, China
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Wang Z, Xu L, Xu H, Wang Y, Hu F, Zou H, Cai Y. Understanding the influence of Social Determinants of Health (SDH) on suicidal behaviors among HIV-positive men who have sex with men (MSM) in China: A population-based study. J Affect Disord 2024; 360:42-49. [PMID: 38815759 DOI: 10.1016/j.jad.2024.05.142] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/20/2023] [Revised: 05/09/2024] [Accepted: 05/27/2024] [Indexed: 06/01/2024]
Abstract
BACKGROUND HIV-positive men who have sex with men (MSM) are at high risk of suicide and experience intersectional inequalities. The Social Determinants of Health (SDH) framework provides valuable insights into how inequalities can lead to adverse outcomes. This study aimed to employ the SDH framework to identify factors that contribute to suicidal behaviors among this population. METHODS 1410 HIV-positive MSM were recruited using a web-based questionnaire, whose mean age was 30.77 ± 6.92 years old. Participants completed questionnaires including baseline information and psychological measurements, such as Suicidal Behaviors Questionnaire-Revised (SBQ-R). Logistic regression analysis was conducted to screen for risk factors associated with suicidal behaviors. RESULTS More than half of the participants (53.3 %, 752/1410) had an SBQ score of 7 or higher. Binary logistic regression analysis of structural and intermediary determinants (Model 3) revealed that sexual orientation, stigma (ORs: 1.018, 95 % CI: 1.005-1.032), interpersonal needs (ORs: 1.021, 95 % CI: 1.010-1.031), depression (ORs: 1.037, 95 % CI: 1.001-1.074) and entrapment (ORs: 1.018, 95 % CI: 1.004-1.032) were positively correlated with suicidal behaviors. Individuals with other or unknown sexual orientation had significantly higher rates of suicidal behaviors compared to those with a heterosexual sexual orientation (ORs: 5.021, 95 % CI: 1.529-17.640). LIMITATIONS Sampling of HIV-positive MSM posed challenges in data collection. It may introduce selection bias and affect generalizability. CONCLUSION This study identified that sexual orientation, stigma, interpersonal needs, depression, and entrapment were significantly associated with suicidal behaviors among HIV-positive MSM. Additionally, these factors can be social determinants of health that contribute to suicidal behaviors.
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Affiliation(s)
- Zuxin Wang
- School of Public Health, Shanghai Jiao Tong University School of Medicine, Shanghai, China; Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
| | - Lulu Xu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
| | - Huifang Xu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
| | - Ying Wang
- School of Public Health, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
| | - Fan Hu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
| | - Huachun Zou
- School of Public Health, Fudan University, Shanghai, China; School of Public Health, Southwest Medical University, Luzhou, China; Kirby Institute, University of New South Wales, Sydney, Australia.
| | - Yong Cai
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
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Jun X, Feng L, Fangyun W, Xuexing W, Linlin L, Zhihui L, Zhijin L. Development and validation of the head and neck cancer psychosocial distress scale (HNCPDS) to identify patients at high risk for psychological problems : a multicenter study. Sci Rep 2024; 14:18591. [PMID: 39127748 PMCID: PMC11316735 DOI: 10.1038/s41598-024-67719-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/04/2024] [Accepted: 07/15/2024] [Indexed: 08/12/2024] Open
Abstract
To develop the Head and Neck Cancer Psychosocial Distress Scale (HNCPDS) with the aim of identifying high-risk individuals for psychosocial distress among patients, and to assess its reliability, validity and applicability. Using the classical test theory, a total of 435 head and neck cancer patients from six tertiary hospitals in China were recruited for developing the HNCPDS. Delphi expert consultation and item analysis were used to improve the content validity of the preliminary HNCPDS. Factor analysis (FA) and Structural equation modeling (SEM) were used to test the structural validity of HNCPDS. Cronbach's alpha coefficient, Spearman-Brown coefficient and Intra-class correlation coefficient (ICC) were used to test the internal consistency and retest reliability of HNCPDS. Multiple stepped-linear regression was used to analyze the risk factors of psychological disorder, and Pearson correlation coefficient was used to analyze the correlation between psychosocial distress and quality of life (QOL). The HNCPDS consisted of 14 items, which were divided into 3 subscales: 3 items for cancer discrimination, 5 items for anxiety and depression, and 6 items for social phobia. The HNCPDS had good validity [KMO coefficient was 0.947, Bartlett's test was 5027.496 (P < 0.001), Cumulative variance contribution rate was 75.416%, and all factor loadings were greater than 0.55], reliability (Cronbach's alpha coefficient was 0.954, Spearman-Brown coefficient was 0.955, test-retest reliability was 0.845) and acceptability [average completion time (14.31 ± 2.354 min) and effective completion rate of 90.63%]. Financial burden, sex, age and personality were found to be independent risk factors for HNCPDS (P < 0.05), and patients with higher HNCPDS scores reported a lower QOL (P < 0.01). The HNCPDS is effective and reliable in early identification and assessment of the level of psychosocial distress in patients with head and neck cancer, which can provide an effective basis for health education, psychological counseling, and social support in the future.
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Affiliation(s)
- Xu Jun
- Department of Oncology, The Third Affiliated Hospital, Jiangxi Medical College, Nanchang University-The First Hospital of Nanchang, No.128, Xiangshan North Road, Donghu District, Nanchang, 330008, Jiangxi, People's Republic of China
| | - Li Feng
- Department of Oncology, Pingxiang People's Hospital, Pingxiang, Jiangxi, People's Republic of China
| | - Wan Fangyun
- Department of Oncology, The Third Affiliated Hospital, Jiangxi Medical College, Nanchang University-The First Hospital of Nanchang, No.128, Xiangshan North Road, Donghu District, Nanchang, 330008, Jiangxi, People's Republic of China
| | - Wang Xuexing
- Department of Oncology, Anning First People's Hospital, Kunming, Yunnan, People's Republic of China
| | - Luan Linlin
- Department of Anesthesia Surgery II, Shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, Shandong, People's Republic of China
| | - Lu Zhihui
- Department of Oncology, The Third Affiliated Hospital, Jiangxi Medical College, Nanchang University-The First Hospital of Nanchang, No.128, Xiangshan North Road, Donghu District, Nanchang, 330008, Jiangxi, People's Republic of China.
- Department of Oncology, The First Affiliated Hospital, Jiangxi Medical College, Nanchang University, NO.17, Yongwaizheng Street, Donghu District, Nanchang, 330000, Jiangxi, People's Republic of China.
| | - Liu Zhijin
- Department of Oncology, The Third Affiliated Hospital, Jiangxi Medical College, Nanchang University-The First Hospital of Nanchang, No.128, Xiangshan North Road, Donghu District, Nanchang, 330008, Jiangxi, People's Republic of China.
- Department of Geriatric Oncology, The Third Affiliated Hospital of Kunming Medical University-Yunnan Cancer Hospital, Kunming, Yunnan, People's Republic of China.
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Yang J, Zhai S, Wang D. Childhood trauma associated with psychotic-like experiences among people living with HIV: The chain mediation effect of stigma and resilience. Schizophr Res 2024; 270:68-75. [PMID: 38870718 DOI: 10.1016/j.schres.2024.06.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/27/2023] [Revised: 04/02/2024] [Accepted: 06/06/2024] [Indexed: 06/15/2024]
Abstract
BACKGROUND Previous research established the associations between childhood trauma and psychosis, but the effects of childhood trauma on psychotic-like experiences (PLEs) among people living with HIV (PLWH) and the potential mediation mechanisms in these associations remain unclear. OBJECTIVE This study aimed to investigate the effects of childhood trauma on PLEs, as well as the chain mediation roles of stigma and resilience in this relationship. Furthermore, we explored whether the aforementioned associations differed when hallucinatory experiences (HEs) and delusional experiences (DEs) were separately modeled. PARTICIPANTS AND SETTING The sample included 333 outpatients participants (95.2 % males, Mage = 28.24 ± 7.12) living with HIV recruited from Hunan Province, China; and data were collected with a cross-sectional survey. METHOD The hypothesized chain mediation models were examined using SPSS PROCESS macro 3.3 software. RESULTS Various influencing mechanisms of childhood trauma on HEs and DEs were examined in this study. Our results showed that, (a) childhood trauma directly exerted negative effect on HEs, while the chain mediation effect of stigma and resilience were not statistically significant. Conversely, (b) childhood trauma exerted no direct influence on DEs but rather through the chain mediation effect of stigma and resilience. CONCLUSIONS The identification of two different routes between that childhood trauma can have on HEs and DEs highlighted the importance of tailored prevention and intervention among PLWH with a history of childhood trauma.
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Affiliation(s)
- Jiaping Yang
- Department of Psychology, Guangzhou University, Guangzhou, China
| | - Shuyi Zhai
- Department of Psychiatry, McGill University, Montreal, QC, Canada
| | - Dongfang Wang
- School of Psychology, Centre for Studies of Psychological Applications, Guangdong Key Laboratory of Mental Health and Cognitive Science, Ministry of Education Key Laboratory of Brain Cognition and Educational Science, Guangdong Emergency Response Technology Research Center for Psychological Assistance in Emergencies, South China Normal University, Guangzhou, China.
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Li Y, Zhang J, Hu J, Chen X, Yang X, Zhu Y, Fan Y, Zhang X, Xu X. Stigma and related influencing factors in brain cancer patients: a cross-sectional study and parallel mediation analysis. Support Care Cancer 2024; 32:522. [PMID: 39017733 DOI: 10.1007/s00520-024-08731-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/06/2024] [Accepted: 07/10/2024] [Indexed: 07/18/2024]
Abstract
PURPOSE Patients with brain cancer and painful symptoms of the disease experience heavy pressure and negative inner experiences, leading to a sense of stigma. Therefore, this study assessed the level of stigma in patients with brain cancer and analyzed the risk factors for stigma to analyze the underlying relationships among depression, social support, low self-esteem, and stigma. METHODS Patients completed the Social Impact Scale, Self-rating Depression Scale, Rosenberg Self-Esteem Scale, Herth Hope Index, Social Support Rating Scale, and Self-Perceived Burden Scale. Multiple linear regression analysis was used to identify factors independently associated with stigma. Parallel mediation analysis was used to evaluate the mediating role of the relationship between psychoemotional factors and stigma. RESULTS A multivariate linear regression analysis demonstrated significant associations between age (β = - 0.189, P = 0.002), treatment (β = 0.184, P = 0.003), self-esteem (β = - 0.128, P = 0.046), depression (β = 0.273, P < 0.001), hope (β = - 0.217, P = 0.003), and self-perceived burden (β = 0.260, P < 0.001) with brain cancer. It was observed that the social support received by brain cancer patients directly impacted their stigma (total effect, - 0.851, P = 0.001). Additionally, this relationship was influenced by depression and self-esteem through two distinct pathways. CONCLUSION Increased stigma among brain cancer patients was found to be associated with severe depression, feelings of inferiority, diminished hope, and a heavy perceived burden. The structural equation modeling (SEM) revealed that social support negatively influenced stigma through depression and self-esteem. It is imperative to grasp patients' inner needs, implement psychological interventions, and cultivate a cancer-friendly social environment to prevent stigmatization and discrimination based on their patient status.
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Affiliation(s)
- Yanqing Li
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Department of Neurosurgery, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
| | - Jiajia Zhang
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Department of Neurosurgery, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
| | - Jiali Hu
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
| | - Xing Chen
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Medical College, Nantong University, 19th Qixiu Road, Nantong, 226001, China
| | - Xueni Yang
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Medical College, Nantong University, 19th Qixiu Road, Nantong, 226001, China
| | - Yingqian Zhu
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Medical College, Nantong University, 19th Qixiu Road, Nantong, 226001, China
| | - Yinyin Fan
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China
- Medical College, Nantong University, 19th Qixiu Road, Nantong, 226001, China
| | - Xiaomei Zhang
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China.
- Department of Neurosurgery, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China.
| | - Xiuqun Xu
- Department of Nursing, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong, 226001, China.
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Liu J, Bao T, Wang Q, Jiang H, Zhang X. Stigma and its associations with self-confidence and sexual relations in 4 types of premature ejaculation. Basic Clin Androl 2024; 34:11. [PMID: 38951750 PMCID: PMC11218248 DOI: 10.1186/s12610-024-00226-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/17/2024] [Accepted: 04/22/2024] [Indexed: 07/03/2024] Open
Abstract
BACKGROUND Although men with premature ejaculation (PE) always show more negative emotions, including embarrassment, guilt and worry, this may be related to the stigma of PE. To investigated stigma and its associations with self-confidence and sexual relations in 4 PE syndromes, a survey was conducted in our hospital from December 2018 to December 2019 among 350 men with self-reported PE and 252 men without self-reported PE. The stigma, self-confidence and sexual relations were assessed by the Social Impact Scale (SIS) and Self-Esteem and Relationship questionnaire (SEAR), respectively. Ejaculation control, sexual life satisfaction and distress caused by PE were evaluated by the Index of PE. RESULTS Men with self-reported PE had higher internalized shame and social isolation scores and lower SEAR scores than control subjects. The highest score of internalized shame and social isolation and the lowest score of SEAR appeared in men with lifelong PE (LPE). After age adjustment, the positive relationships were stronger between distress about PE and internalized shame. Whereas, the stronger negative associations were found between social isolation and sexual satisfaction. The strongest association was observed between social isolation and sexual relationship. Therefore, the stigma associated with PE adversely affects the self-confidence, self-esteem, and sexual relationships of men with PE. CONCLUSION Men with PE, especially LPE, have a high level of stigma and disharmonious sexual relations, and often lack self-confidence and self-esteem, which have a certain negative impact on their physical and mental health and life. These will be the key issues to be considered when we formulate a personalized treatment plan for PE.
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Affiliation(s)
- Jishuang Liu
- Department of Urology, Anhui Province Key Laboratory of Genitourinary Diseases, The Institute of Urology, The first affiliated hospital of Anhui Medical University, Hefei, Anhui, China
- Department of Urology, Anqing Municipal Hospital, Anqing Medical Center of Anhui Medical University, Renmin Road No. 352, Yingjiang District, Anqing, 246003, Anhui, People's Republic of China
| | - Tong Bao
- Department of Urology, Anqing Municipal Hospital, Anqing Medical Center of Anhui Medical University, Renmin Road No. 352, Yingjiang District, Anqing, 246003, Anhui, People's Republic of China
| | - Qunfeng Wang
- Department of Urology, Anqing Municipal Hospital, Anqing Medical Center of Anhui Medical University, Renmin Road No. 352, Yingjiang District, Anqing, 246003, Anhui, People's Republic of China
| | - Hui Jiang
- Department of Urology, Peking University First Hospital Institute of Urology, Peking University Andrology Center, Peking University First Hospital, No. 8 Xishiku Street Xicheng District, Beijing, China.
| | - Xiansheng Zhang
- Department of Urology, The First Affiliated Hospital of Anhui Medical University, Hefei, China.
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Zheng S, Liu S, Yang Q, Chan S, Huang W, Jiang X, Zhu J. The effectiveness of interventions to reduce cancer-related stigma: An integrative review. J Clin Nurs 2024; 33:2438-2455. [PMID: 38345136 DOI: 10.1111/jocn.17014] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2023] [Revised: 12/15/2023] [Accepted: 01/10/2024] [Indexed: 06/14/2024]
Abstract
AIMS The clinical significance of cancer-related stigma on patients' well-being has been widely established. Stigma can be perceived and internalised by cancer patients or implemented by the general population and healthcare workers. Various interventions have been carried out to reduce cancer-related stigma, but their effectiveness is not well-understood. This review aims to synthesise evidence on the effectiveness of interventions to reduce cancer-related stigma. DESIGN An integrative review. METHODS This integrative review combined both qualitative and quantitative studies and followed five steps to identify problems, search for the literature, appraise the literature quality, analyse data, and present data. Mixed Methods Appraisal Tool (version 2018) was applied to evaluate the quality of the included studies. DATA SOURCES Databases included Web of Science, MEDLINE, SpringerLink, Wiley Online Journals, Cochrane Library, ScienceDirect, OVID, and China National Knowledge Infrastructure (from the inception of each database to 30 April 2021). RESULTS Eighteen quantitative, six qualitative, and five mixed-methods studies were included in this review. Cultural factors should be considered when conducting interventions to reduce cancer-related stigma. For cancer patients, multi-component interventions have demonstrated a positive effect on their perceived stigma. For general population, interactive interventions show promise to reduce their implemented stigma towards cancer patients. For healthcare workers, there is a paucity of studies to reduce their implemented stigma. Existing studies reported inconclusive evidence, partially due to the lack of a robust study design with an adequate sample size. CONCLUSIONS Multi-component and interactive interventions show promise to relieve cancer-related stigma. More methodologically robust studies should be conducted in different cultures to elucidate the most appropriate interventions for different populations to reduce cancer-related stigma. IMPLICATION FOR THE PROFESSION AND PATIENT CARE These findings will facilitate healthcare workers to design and implement interventions to reduce cancer-related stigma, thus improving the quality of life for cancer patients. PATIENT AND PUBLIC CONTRIBUTION No patient and public contribution.
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Affiliation(s)
- Shuang Zheng
- School of Medicine, Xiamen University, Xiamen, China
| | - Shengjie Liu
- School of Medicine, Xiamen University, Xiamen, China
- Department of Thyroid and Breast Surgery, Weifang People's Hospital, Shandong Second Medical University, Weifang, China
| | - Qingmo Yang
- Department of Breast Surgery, The First Affiliated Hospital of Xiamen University, Xiamen, China
| | - Sally Chan
- President Office, Tung Wah College, Hong Kong, China
| | - Wenhe Huang
- Cancer Center, Department of Breast and Thyroid Surgery, Xiang'an Hospital, Xiamen University, Xiamen, China
| | - Xiaoying Jiang
- School of Nursing, Fujian Medical University, Fuzhou, China
| | - Jiemin Zhu
- Women and Children's Hospital, School of Medicine, Xiamen University, Xiamen, China
- Cancer Care Research Unit, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia
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Pan Y, Zhang X, Wen X, Yuan N, Guo L, Shi Y, Jia Y, Guo Y, Hao F, Qu S, Chen Z, Yang L, Wang X, Liu Y. Development and validation of a machine learning model for prediction of comorbid major depression disorder among narcolepsy type 1. Sleep Med 2024; 119:556-564. [PMID: 38810481 DOI: 10.1016/j.sleep.2024.05.045] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/21/2023] [Revised: 05/04/2024] [Accepted: 05/22/2024] [Indexed: 05/31/2024]
Abstract
BACKGROUND Major depression disorder (MDD) forms a common psychiatric comorbidity among patients with narcolepsy type 1 (NT1), yet its impact on patients with NT1 is often overlooked by neurologists. Currently, there is a lack of effective methods for accurately predicting MDD in patients with NT1. OBJECTIVE This study utilized machine learning (ML) algorithms to identify critical variables and developed the prediction model for predicting MDD in patients with NT1. METHODS The study included 267 NT1 patients from four sleep centers. The diagnosis of comorbid MDD was based on Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM-5). ML models, including six full models and six compact models, were developed using a training set. The performance of these models was compared in the testing set, and the optimal model was evaluated in the testing set. Various evaluation metrics, such as Area under the receiver operating curve (AUC), precision-recall (PR) curve and calibration curve were employed to assess and compare the performance of the ML models. Model interpretability was demonstrated using SHAP. RESULT In the testing set, the logistic regression (LG) model demonstrated superior performance compared to other ML models based on evaluation metrics such as AUC, PR curve, and calibration curve. The top eight features used in the LG model, ranked by feature importance, included social impact scale (SIS) score, narcolepsy severity scale (NSS) score, total sleep time, body mass index (BMI), education years, age of onset, sleep efficiency, sleep latency. CONCLUSION The study yielded a straightforward and practical ML model for the early identification of MDD in patients with NT1. A web-based tool for clinical applications was developed, which deserves further verification in diverse clinical settings.
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Affiliation(s)
- Yuanhang Pan
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Xinbo Zhang
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Xinyu Wen
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Na Yuan
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Li Guo
- Department of Psychiatry, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Yifan Shi
- Department of Psychiatry, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Yuanyuan Jia
- Encerebropathy Department, No.2, Baoji Hospital of Traditional Chinese Medicine, Baoji, PR China.
| | - Yanzhao Guo
- Encerebropathy Department, No.10, Xi'an Hospital of Traditional Chinese Medicine, Xi'an, PR China.
| | - Fengli Hao
- Department of Neurology, Xi'an Daxing Hospital, Xi'an, PR China.
| | - Shuyi Qu
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Ze Chen
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Lei Yang
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Xiaoli Wang
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
| | - Yonghong Liu
- Department of Neurology, Xijing Hospital, Air Force Medical University, Xi'an, PR China.
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Guo Y, Zhou M, Yan X, Liu Y, Wang L. Latent class analysis and longitudinal development trajectory study of psychological distress in patients with stroke: a study protocol. Front Psychiatry 2024; 15:1326988. [PMID: 38887726 PMCID: PMC11181843 DOI: 10.3389/fpsyt.2024.1326988] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/24/2023] [Accepted: 04/11/2024] [Indexed: 06/20/2024] Open
Abstract
Background Psychological distress affects the treatment and rehabilitation of patients with stroke, affects their long-term functional exercise and quality of life, and increases the risk of stroke recurrence and even death. This is a multi-dimensional and multi-level mental health problem and a dynamic process variable that shows a dynamic development trend with time. However, previous studies have been insufficient to deeply study the change mechanism of psychological distress, and there remains a lack of forward-looking longitudinal studies to analyze its change trajectory. This study aimed to investigate potential categories and how psychological distress changes over time and to examine conversion probability in these transformation processes. Methods This prospective longitudinal mixed-method study investigated the potential categories and change trajectories of distress in patients with stroke. A total of 492 participants from three hospitals were recruited for quantitative analysis. Latent class analysis and latent transition analysis (LCA/LTA) were used to identify meaningful subgroups, transitions between those classes across time, and baseline demographic features that help predict and design tailored interventions. Discussion A comprehensive understanding of the potential category and transformation processes of psychological distress over time, including the impact of the sense of demographic data on the role of shame and loneliness, can lead to the development of psychological distress treatment tailored to the unique needs of patients with stroke. Thus, this study can promote more effective and successful treatment outcomes, reduce the stigma surrounding disease issues among patients, and encourage them to use psychological consultation.
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Affiliation(s)
- Yunmei Guo
- Nursing Department, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou, China
| | - Ming Zhou
- School of Forensic Medicine, Zunyi Medical University, Zunyi, Guizhou, China
| | - Xin Yan
- Nursing Department, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou, China
| | - Ying Liu
- Nursing Department, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou, China
| | - Lianhong Wang
- Nursing Department, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou, China
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Wu X, Hu Y, Li Y, Li S, Li H, Ye X, Hu A. Stigma and self-esteem in facial burn patients: A correlation study. Burns 2024; 50:1341-1348. [PMID: 38472001 DOI: 10.1016/j.burns.2024.01.013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/12/2022] [Revised: 11/23/2023] [Accepted: 01/11/2024] [Indexed: 03/14/2024]
Abstract
BACKGROUND A considerable number of burn patients have greater psychological stress due to the special trauma site. In clinical practice, it is found that medical staff pay more attention to the rehabilitation of physical function, while the mental health status of patients is greatly neglected. In contact with patients, we found that attention should be paid to the levels of stigma and self-esteem. However, there are few studies on stigma and self-esteem in patients with facial burns. Therefore, this study aimed to describe the stigma and self-esteem levels of facial burns, investigate the relationship between these two variables, and explore the influencing factors of stigma in patients with facial burns, in order to provide evidence for follow-up interventions to improve this population. METHODS From August 2020 to June 2021, we recruited patients with facial burns who met the inclusion criteria in one burn specialist clinic and three burn units of a tertiary A hospital in Guangzhou, China. The survey tools of this study include sociodemographic and disease-related information questionnaires, the Chinese version of the Social Impact Scale, and the self-esteem scale (these scales were validated). SPSS 25.0 software was used for data analysis through t test, analysis of variance, correlation analysis, multiple linear regression method for data statistics. RESULTS The total stigma score of facial burn patients was (58.01 ± 7.57), which was at a medium level; the self-esteem score was (19.72 ± 2.43), which was at a low level. Correlation analysis showed that there was a positive correlation between the self-esteem score and the total score of stigma (r = 0.286, P < 0.01). The family per capita monthly income, education level, way of medical expenses expenditure, and self-esteem of facial burn patients were the influencing factors of their stigma, and these factors explained 33.7% of the variation in stigma (F=8.659, P<0.01). CONCLUSIONS Patients with facial burns have low levels of stigma and self-esteem, which requires our efforts. In particular, there is a positive correlation between stigma and self-esteem, and self-esteem is an independent risk factor affecting stigma. Our findings suggest that interventions aimed at enhancing self-esteem have the potential to positively impact the reduction of stigma in this patient population.
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Affiliation(s)
- Xiaoxue Wu
- M.N, StateKey Laboratory of Ophthalmology, Zhongshan Ophthalmic Center, Sun Yat-sen University, Guangzhou 510060, China
| | - Yueyun Hu
- M.N, the Third Affiliated Hospital, Sun Yat-sen University, No. 600, Tianhe Road, Tianhe, Guangzhou, Guangdong, China
| | - Yanyan Li
- M.N, Henan Provincial People's Hospital, No. 7 Weiwu Road, Jinshui, Zhengzhou, Henan, China
| | - Siqing Li
- M.N, The Fifth Affiliated Hospital of Sun Yat-sen University, No. 52 Meihua East Road, Zhuhai, Guangdong, China
| | - Haiyan Li
- RN, Department of Nursing, Guangzhou Red Cross Hospital, Jinan University, Guangzhou 510220, PR China
| | - Xuemei Ye
- RN, Department of Nursing, Guangzhou Red Cross Hospital, Jinan University, Guangzhou 510220, PR China
| | - Ailing Hu
- M.N, the Third Affiliated Hospital, Sun Yat-sen University, No. 600, Tianhe Road, Tianhe, Guangzhou, Guangdong, China; Zhaoqing Hospital, The Third Affiliated Hospital of Sun Yat-sen University, No. 1, Yanyang Road, Dinghu, Zhao Qing, Guangdong, China.
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Poku O, Attoh-Okine ND, Corbeil T, Chen Y, Kluisza L, Ahmed A, Liotta L, Morrison C, Dolezal C, Robbins RN, Mellins CA. Assessing the Validity of the Social Impact Scale Among a Longitudinal Cohort of Adolescents and Young Adults Living With Perinatally Acquired HIV. J Acquir Immune Defic Syndr 2024; 96:11-17. [PMID: 38301642 PMCID: PMC11009064 DOI: 10.1097/qai.0000000000003390] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/12/2023] [Accepted: 12/18/2023] [Indexed: 02/03/2024]
Abstract
BACKGROUND With few psychometrically evaluated HIV-related stigma measures for adolescents and young adults living with HIV, we examined the developmental applicability (ie, validity) of 2 subscales of the commonly used stigma measure, the Social Impact Scale, among a cohort of adolescents and young adults with perinatally acquired HIV. SETTING Data were obtained from a New York City longitudinal study (N = 340). This study primarily comprised Black and Latinx adolescents and young adults with either perinatally acquired HIV or those with perinatal exposure but who are uninfected. Data for this analysis were obtained from the population with perinatally acquired HIV and spanned approximately a 15-year survey period (2003-2018). METHODS A confirmatory factor analysis was used at 7 time points to assess whether the Social Rejection and Internalized Shame subscales were consistent in this cohort over time. Overall and individual Cronbach alphas were reported to show the strength of the internal consistency. RESULTS The mean age from baseline to follow-up 6 ranged from 12 to 23 years over the study period. The Social Rejection subscale was acceptably valid across follow-up periods with strong factor loadings and Cronbach alphas higher than 0.70. However, the Internalized Shame subscale was less valid among younger adolescents. Starting at follow-up 2, we observed better validity with the Internalized Shame subscale performance. CONCLUSION Future research must consider mechanisms for developing and adapting measures from a developmental perspective to best measure the experiences of HIV-related stigma among younger populations.
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Affiliation(s)
- Ohemaa Poku
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Naa-Djama Attoh-Okine
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
- Department of Surgery, Jamaica Hospital Medical Center, 8900 Van Wyck Expressway, Jamaica, NY, 11418, USA
| | - Thomas Corbeil
- Mental Health Data Science, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Ying Chen
- Mental Health Data Science, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Luke Kluisza
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Afifa Ahmed
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Lucy Liotta
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Corey Morrison
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Curtis Dolezal
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Reuben N. Robbins
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
| | - Claude A. Mellins
- HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, United States
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Lemmen J, Mageto S, Njuguna F, Midiwo N, Vik TA, Kaspers G, Mostert S. A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya. Psychooncology 2024; 33:e6345. [PMID: 38708858 DOI: 10.1002/pon.6345] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/21/2023] [Revised: 04/10/2024] [Accepted: 04/20/2024] [Indexed: 05/07/2024]
Abstract
OBJECTIVES Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors. METHODS Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated. RESULTS Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability. CONCLUSIONS Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.
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Affiliation(s)
- Jesse Lemmen
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands
| | - Susan Mageto
- Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya
- Pharmacology, School of Health Sciences, Kisii University, Kisii, Kenya
| | - Festus Njuguna
- Department of Child Health and Pediatrics, Moi University, Eldoret, Kenya
| | - Nancy Midiwo
- Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya
| | - Terry A Vik
- Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya
- Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA
| | - Gertjan Kaspers
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands
| | - Saskia Mostert
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
- Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands
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Zhang Y, Yang X, Chai X, Han S, Zhang L, Shao Y, Ma J, Li K, Wang Z. Psychometric properties of stigma and discrimination measurement tools for persons living with HIV: a systematic review using the COSMIN methodology. Syst Rev 2024; 13:115. [PMID: 38678285 PMCID: PMC11055308 DOI: 10.1186/s13643-024-02535-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/17/2023] [Accepted: 04/17/2024] [Indexed: 04/29/2024] Open
Abstract
BACKGROUND The development of antiretroviral therapy broadly extends the life expectancy of persons living with HIV (PLHIV). However, stigma and discrimination are still great threat to these individuals and the world's public health care system. Accurate and reproducible measures are prerequisites for robust results. Therefore, it is essential to choose an acceptable measure with satisfactory psychometric properties to assess stigma and discrimination. There has been no systematic review of different stigma and discrimination tools in the field of HIV care. Researchers and clinical practitioners do not have a solid reference for selecting stigma and discrimination measurement tools. METHODS We systematically searched English and Chinese databases, including PubMed, EMBASE, CINAHL, Web of Science, PsycINFO, ProQuest Dissertations and Theses, The Cochrane Library, CNKI,, and Wanfang, to obtain literature about stigma and discrimination measurement tools that have been developed and applied in the field of HIV. The search period was from 1st January, 1996 to 22nd November 2021. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline (2018 version) was applied to assess the risk of bias for each involved study and summarize the psychometric properties of each tool. The modified version of the Grading of Recommendations Assessment, Development, and, Evaluation (GRADE) method was used to grade the evidence and develop recommendations. RESULTS We included 45 studies and 19 PROMs for HIV/AIDS-related stigma and discrimination among PLHIV. All studies had sufficient methodological quality in content validity, structural validity, internal consistency, and the hypothesis testing of structural validity. Limited evidence was found for cross-cultural validity, stability, and criterion validity. No relevant evidence was found concerning measurement error and responsiveness. The Internalized AIDS-related Stigma Scale (IARSS), Internalized HIV Stigma Scale (IHSS), and Wright's HIV stigma scale (WHSS) are recommended for use. CONCLUSIONS This study recommends three PROMs for different stigma and discrimination scenarios, including IARSS for its good quality and convenience, IHSS for its broader range of items, higher sensitivity, and greater precision, and WHSS for its comprehensive and quick screening. Researchers should also consider the relevance and feasibility of the measurements before putting them into practice. SYSTEMATIC REVIEW REGISTRATION PROSPERO CRD42022308579.
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Affiliation(s)
- Yizhu Zhang
- School of Nursing, Peking University, Beijing, 100191, China
| | - Xianxia Yang
- School of Public Health, Wuhan University, Wuhan, China
| | - Xinru Chai
- School of Nursing, Peking University, Beijing, 100191, China
| | - Shuyu Han
- School of Nursing, Peking University, Beijing, 100191, China.
| | - Lili Zhang
- Department of Nursing, Beijing Youan Hospital Affiliated with Capital Medical University, Beijing, 100069, China
| | - Ying Shao
- Department of Infection, Beijing Youan Hospital Affiliated with Capital Medical University, Beijing, 100069, China
| | - Jianhong Ma
- Department of Infection, Beijing Youan Hospital Affiliated with Capital Medical University, Beijing, 100069, China
| | - Ke Li
- Department of Emergency, Peking University First Hospital, Beijing, 100034, China
| | - Zhiwen Wang
- School of Nursing, Peking University, Beijing, 100191, China
- Peking University Health Science Centre for Evidence-Based Nursing: A Joanna Briggs Institute Affiliated Group, Beijing, 100191, China
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De Luca GD, Lin X. The role of health and health systems in promoting social capital, political participation and peace: A narrative review. Health Policy 2024; 141:105009. [PMID: 38350755 DOI: 10.1016/j.healthpol.2024.105009] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/27/2023] [Revised: 12/29/2023] [Accepted: 01/09/2024] [Indexed: 02/15/2024]
Abstract
High levels of violence and insecurity are highly detrimental for societies. United Nations Sustainable Development Goal 16 is advocating for peaceful, accountable and inclusive institutions as one powerful channel to foster global development. Investing in health and health policies can potentially contribute achieving these objectives. After providing a conceptual framework, this article reviews the existing literature on the evidence of the role of health and health systems in promoting social capital and trust, political engagement and participation, and peace that closely relate to the objectives of Sustainable Development Goal 16. We provide evidence of a systematically positive impact of better physical and mental health on social capital, and on political participation, both contributing to the sustainability of inclusive democratic institutions. We also document that health and health systems can help supporting peace, both via the reduction of social inequality and grievances, and by reducing the disruptive effects of epidemic shocks. Overall, the study provides evidence that health and health systems can generate co-benefits outside the health domain by promoting social capital, political participation and peace.
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Affiliation(s)
| | - Xi Lin
- University of York, Heslington, YO105DD York, UK
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Wang D, Scherffius A, Ouyang X, Deng Q. Family Functioning and Depressive Symptoms Among HIV-Positive Men Who Have Sex with Men: Mediating Roles of Stigma and Resilience. Psychol Res Behav Manag 2024; 17:755-764. [PMID: 38434956 PMCID: PMC10906277 DOI: 10.2147/prbm.s449825] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/14/2023] [Accepted: 02/08/2024] [Indexed: 03/05/2024] Open
Abstract
Background Depressive symptoms are common among HIV-positive men who have sex with men (MSM). This study aims to explore (1) the relationship between family functioning and depressive symptoms and (2) the mediating roles of stigma and resilience in the relationship among HIV-positive MSM. Methods We used data from a cross-sectional study of a convenience sample in Hunan Province, China, conducted in 2019. The data analysis included 191 HIV-positive MSM with an average age of 26.98 years. All participants completed self-report questionnaires on demographic variables, family functioning, stigma, resilience, and depressive symptoms. Results Better family functioning was significantly associated with lower depressive symptoms. Both stigma (Indirect effect = -0.04, 95% CI, -0.10 ~ -0.001) and resilience (Indirect effect = -0.06, 95% CI, -0.12 ~ -0.01) were significant partial mediators in the relationship between family functioning and depressive symptoms. A parallel and chain mediating role of stigma and resilience in the relationship between family functioning and depressive symptoms was also supported (Indirect effect = -0.03, 95% CI, -0.08 ~ -0.01). Conclusion Improving family functioning is crucial for alleviating depressive symptoms among HIV-positive MSM in China. Depression assessment and reduction should be an integral part of prevention and treatment programs targeting stigma and resilience.
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Affiliation(s)
- Dongfang Wang
- Department of Psychiatry, National Clinical Research Center for Mental Disorders, and National Center for Mental Disorders, The Second Xiangya Hospital of Central South University, Changsha, People’s Republic of China
- School of Psychology, Centre for Studies of Psychological Applications, Guangdong Key Laboratory of Mental Health and Cognitive Science, Ministry of Education Key Laboratory of Brain Cognition and Educational Science, South China Normal University, Guangzhou, People’s Republic of China
| | - Andrew Scherffius
- Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Xuan Ouyang
- Department of Psychiatry, National Clinical Research Center for Mental Disorders, and National Center for Mental Disorders, The Second Xiangya Hospital of Central South University, Changsha, People’s Republic of China
| | - Qijian Deng
- Department of Psychiatry, National Clinical Research Center for Mental Disorders, and National Center for Mental Disorders, The Second Xiangya Hospital of Central South University, Changsha, People’s Republic of China
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Cenit-García J, Buendia-Gilabert C, Contreras-Molina C, Puente-Fernández D, Fernández-Castillo R, García-Caro MP. Development and Psychometric Validation of the Breast Cancer Stigma Assessment Scale for Women with Breast Cancer and Its Survivors. Healthcare (Basel) 2024; 12:420. [PMID: 38391796 PMCID: PMC10887980 DOI: 10.3390/healthcare12040420] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/29/2023] [Revised: 01/14/2024] [Accepted: 01/26/2024] [Indexed: 02/24/2024] Open
Abstract
BACKGROUND The increase in breast cancer cases and breast cancer survival makes it advisable to quantify the impact of the health-related stigma of this disease. PURPOSE/OBJECTIVES To develop and validate a breast cancer stigma scale in Spanish. METHODS Women diagnosed with, or survivors of, breast cancer were included. The development of the Breast Cancer Stigma Assessment Scale (BCSAS) involved both a literature review and personal interviews. Content validity was assessed using a Delphi study and a pilot test; construct validity was evaluated using an exploratory factor analysis; and convergent validity was assessed using six scales. Cronbach's α internal consistency and test-retest reliability were used to determine the reliability of the scales. RESULTS 231 women responded to the 28-item scale. The BCSAS showed good reliability, with α = 0.897. Seven factors emerged: concealment (α = 0.765), disturbance (α = 0.772), internalized stigma (α = 0.750), aesthetics (α = 0.779), course (α = 0.599), danger (α = 0.502), and origin (α = 0.350). The test-retest reliability was 0.830 (p < 0.001). Significant correlation was observed with event centrality (r = 0.701), anxiety-depression (r = 0.668), shame (r = 0.645), guilt (r = 0.524), and quality of life (r = -0.545). CONCLUSIONS The BCSAS is a reliable and valid measure of stigma in women with breast cancer and its survivors. It could be useful for detecting stigma risk and establishing psychotherapeutic and care priorities.
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Affiliation(s)
- Judit Cenit-García
- Virgen de las Nieves University Hospital, 18014 Granada, Spain
- ibs.GRANADA-Biosanitary Research Institute, 18012 Granada, Spain
| | | | | | - Daniel Puente-Fernández
- ibs.GRANADA-Biosanitary Research Institute, 18012 Granada, Spain
- Department of Nursing, Faculty of Health Sciences, University of Granada, Avda. de la Ilustración, 60, 18016 Granada, Spain
| | - Rafael Fernández-Castillo
- Department of Nursing, Faculty of Health Sciences, University of Granada, Avda. de la Ilustración, 60, 18016 Granada, Spain
| | - María Paz García-Caro
- ibs.GRANADA-Biosanitary Research Institute, 18012 Granada, Spain
- Department of Nursing, Faculty of Health Sciences, University of Granada, Avda. de la Ilustración, 60, 18016 Granada, Spain
- CIMCYC-Mind, Brain and Behavior Research Center, University of Granada, 18071 Granada, Spain
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Li S, Jiang Y, Yuan B, Wang M, Zeng Y, Knobf MT, Wu J, Ye Z. The interplay between stigma and sleep quality in breast cancer: A cross-sectional network analysis. Eur J Oncol Nurs 2024; 68:102502. [PMID: 38194900 DOI: 10.1016/j.ejon.2023.102502] [Citation(s) in RCA: 7] [Impact Index Per Article: 7.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/16/2023] [Revised: 12/16/2023] [Accepted: 12/26/2023] [Indexed: 01/11/2024]
Abstract
PURPOSE Stigma, a subjective internal shame, arises from the association of cancer with death. Sleep quality can be considered a product of stigma. However, the extent of overlap or difference between the two remains unclear. METHODS In total, 512 survivors with breast cancer were recruited from the "Be Resilient to Breast Cancer" project between May and August 2023. This study estimated the stigma, sleep quality, and their relationship by conducting a cross-sectional network analysis. The social impact scale and Pittsburgh Sleep Quality Index scale were employed in this study. RESULTS The core symptom for stigma from the network analysis was alienation by people (Strength = 1.213, Betweenness = 13, Closeness = 0.00211). The core symptom for sleep quality were the sleep quality (Str = 1.114, Bet = 17, Clo = 0.01586). Regarding the combination network, results showed that self-isolation and daytime dysfunction were the bridge nodes and that daytime dysfunction was positively associated with feeling less capable than before (according to self) (r = 0.15). CONCLUSION Our study demonstrates the core symptoms in different symptomatic networks, which can be targeted for treatment personalization and aid in the improvement of sleep quality and stigma in breast cancer patients.
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Affiliation(s)
- Shuhan Li
- School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, Guangdong Province, China
| | - Yingting Jiang
- School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, Guangdong Province, China
| | - Bixia Yuan
- School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, Guangdong Province, China
| | - Minyi Wang
- School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, Guangdong Province, China
| | - Yihao Zeng
- School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, Guangdong Province, China
| | - M Tish Knobf
- School of Nursing, Yale University, Orange, CT, United States
| | - Jiahua Wu
- Department of Guangdong Provincial Hospital of Chinese Medicine, Guangzhou, Guangdong Province, China.
| | - Zengjie Ye
- School of Nursing, Guangzhou Medical University, Guangzhou, Guangdong Province, China.
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Wang R, Wang Z, Shi D, Xu L, Liu Y, Liu S, Chen H, Chen Y, Xia D, Ge X, Xu H, Chen Y, Wang Z, Chang R, Hu F, Shen T, Wang Y, Cai Y. Evaluation of the psychometrics of the Social Impact Scale and its association with depression among asymptomatic COVID-19 carriers. BJPsych Open 2024; 10:e41. [PMID: 38297498 PMCID: PMC10897691 DOI: 10.1192/bjo.2023.651] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/02/2024] Open
Abstract
BACKGROUND COVID-19 carriers experience psychological stresses and mental health issues such as varying degrees of stigma. The Social Impact Scale (SIS) can be used to measure the stigmatisation of COVID-19 carriers who experience such problems. AIMS To evaluate the reliability and validity of the Chinese version of the SIS, and the association between stigma and depression among asymptomatic COVID-19 carriers in Shanghai, China. METHOD A total of 1283 asymptomatic COVID-19 carriers from Shanghai Ruijin Jiahe Fangcang Shelter Hospital were recruited, with a mean age of 39.64 ± 11.14 years (59.6% male). Participants completed questionnaires, including baseline information and psychological measurements, the SIS and Self-Rating Depression Scale. The psychometrics of the SIS and its association with depression were examined through exploratory factor analysis, confirmatory factor analysis and receiver operating characteristic analysis. RESULTS The average participant SIS score was 42.66 ± 14.61 (range: 24-96) years. Analyses suggested the model had four factors: social rejection, financial insecurity, internalised shame and social isolation. The model fit statistics of the four-factor SIS were 0.913 for the comparative fit index, 0.902 for the Tucker-Lewis index and 0.088 for root-mean-square error of approximation. Standard estimated factor loadings ranged from 0.509 to 0.836. After controlling for demographic characteristics, the total score of the 23-item SIS predicted depression (odds ratio: 1.087, 95% CI 1.061-1.115; area under the curve: 0.84, 95% CI 0.788-0.892). CONCLUSIONS The Chinese version of the SIS showed good psychometric properties and can be used to assess the level of perceived stigma experienced by asymptomatic COVID-19 carriers.
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Affiliation(s)
- Rongxi Wang
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; Department of Scientific Research and Disciplinary Development, Shanghai University of Medicine & Health Sciences Affiliated Zhoupu Hospital, China; and School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Zuxin Wang
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Dake Shi
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Department of Infection Control, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, China
| | - Liling Xu
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China
| | - Yujie Liu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Shangbin Liu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Hui Chen
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Yingjie Chen
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Danni Xia
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Xin Ge
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Huifang Xu
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Yufei Chen
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Zhiqiang Wang
- School of Public Health, Shanghai Jiao Tong University School of Medicine, China
| | - Ruijie Chang
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Center for Community Health Care, Hospital Development Institute Shanghai Jiao Tong University, China
| | - Fan Hu
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Center for Community Health Care, Hospital Development Institute Shanghai Jiao Tong University, China
| | - Tian Shen
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Center for Community Health Care, Hospital Development Institute Shanghai Jiao Tong University, China
| | - Ying Wang
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Center for Community Health Care, Hospital Development Institute Shanghai Jiao Tong University, China
| | - Yong Cai
- Public Health Department, Hongqiao International Institute of Medicine, Tongren Hospital, Shanghai Jiao Tong University School of Medicine, China; School of Public Health, Shanghai Jiao Tong University School of Medicine, China; and Center for Community Health Care, Hospital Development Institute Shanghai Jiao Tong University, China
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Lu J, Shan Y, Ji M, Low LF, Kim S, Barcenilla-Wong A, Shen S, Chu W. Development of a method and an assessment construct for person-centered translation of dementia public stigma scales. Front Public Health 2024; 11:1233400. [PMID: 38322363 PMCID: PMC10846308 DOI: 10.3389/fpubh.2023.1233400] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/02/2023] [Accepted: 12/11/2023] [Indexed: 02/08/2024] Open
Abstract
Background With the number of people with dementia dramatically increasing over time and dementia becoming a major health concern worldwide, scales have been developed to assess the stigma socially attached to this neurodegenerative disorder. There are, however, almost no available methods and assessment constructs for person-centered translation of dementia public stigma scales. Objective To develop such a method and such an assessment construct by translating the Dementia Public Stigma Scale (DPSS) into standard written Chinese. Methods We translated the DPSS following three major steps: (1) literal translation and mistranslation identification; (2) panel discussions of items with problematic translations; and (3) the final checking of the translated scale. Informed by the translation and adaptation process, we then developed a method for person-centered translation of dementia public stigma scales. Based on this method and our panel discussions, we finally proposed a tripartite assessment construct for quality evaluation of the translation of dementia public stigma scales. Results Forward and backward translation did not work sufficiently in dementia public stigma scale translation. Mistranslations were induced by three major causes, including confusion caused by multiple Chinese meanings of the immediate Chinese direct translation, the lack of immediate Chinese direct translation because of varying positive/negative emotions attached to multiple translations, and the lack of culture-specific idioms in Chinese. Based on these factors, we proposed a tripartite dementia translation assessment construct. Following this assessment tool, we determined the best Chinese version that could further be tested for its psychometric properties among the public. Conclusion A method and an assessment construct for person-centered translation of dementia public stigma scales were developed. Such a method and such an assessment construct could be followed in the translation of dementia public stigma scales and the translation evaluation of such scales.
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Affiliation(s)
- Junfeng Lu
- College of International Studies, Jiaxing University, Jiaxing, China
| | - Yi Shan
- College of International Studies, Jiaxing University, Jiaxing, China
| | - Meng Ji
- School of Languages and Cultures, University of Sydney, Sydney, NSW, Australia
| | - Lee-Fay Low
- Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
| | - Sarang Kim
- Australian Institute of Health and Welfare (AIHW), Canberra, ACT, Australia
| | | | - Sam Shen
- Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
| | - Weiwei Chu
- College of Foreign Languages and Literature, Fudan University, Shanghai, China
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Stopic V, Jost ST, Haupt J, Brandt GA, van der Linden C, Petry-Schmelzer JN, Dembek TA, Fink GR, Batzu L, Rizos A, Chaudhuri KR, Dafsari HS, Gruber D, Ebersbach G, Kessler J, Barbe MT, Sauerbier A. Validation Study of the Parkinson's Disease Stigma Questionnaire (PDStigmaQuest). JOURNAL OF PARKINSON'S DISEASE 2024; 14:1469-1480. [PMID: 39331110 PMCID: PMC11492143 DOI: 10.3233/jpd-240224] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 08/08/2024] [Indexed: 09/28/2024]
Abstract
Background Stigma is a relevant aspect of Parkinson's disease (PD). Specific stigma tools are needed to address the complex construct of stigma in PD comprehensively. Objective To test the dimensionality and psychometric properties of the newly developed Parkinson's Disease Stigma Questionnaire (PDStigmaQuest). Methods In this multi-center, cross-sectional study including PD patients and healthy controls, the dimensionality of the PDStigmaQuest was examined through exploratory factor analysis. Acceptability and psychometric properties were investigated. PDStigmaQuest scores of patients and healthy controls were compared. Results In total, 201 PD patients and 101 healthy controls were included in the final analysis. Results suggested high data quality of the PDStigmaQuest (0.0001% missing data for patients). The exploratory factor analysis produced four factors: felt stigma, hiding, enacted stigma: rejection, and enacted stigma: patronization, explaining 47.9% of variance. An optional work domain for employed patients was included. Moderate floor effects and skewness, but no ceiling effects were found. Cronbach's alpha of 0.85 indicated high internal consistency. Calculated item-total correlations met standard criteria. Test-retest reliability was high (rs = 0.83). PDStigmaQuest scores correlated significantly with other stigma measures (rs = 0.56-0.69) and were significantly higher in patients than in healthy controls and higher in patients with depressive symptoms than in those without. Conclusions The patient-reported 18-item PDStigmaQuest showed strong psychometric properties of validity and reliability. Our results suggest that the PDStigmaQuest can be used to assess and evaluate stigma comprehensively in PD, which will improve our understanding of the construct of PD stigma.
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Affiliation(s)
- Vasilija Stopic
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Stefanie T. Jost
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Julius Haupt
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Gregor A. Brandt
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Christina van der Linden
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Jan Niklas Petry-Schmelzer
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Till A. Dembek
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Gereon R. Fink
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
- Cognitive Neuroscience, Institute of Neuroscience and Medicine (INM-3), Research Centre Jülich, Jülich, Germany
| | - Lucia Batzu
- Parkinson’s Foundation International Centre of Excellence, King’s College Hospital, London, UK
- Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
| | - Alexandra Rizos
- Parkinson’s Foundation International Centre of Excellence, King’s College Hospital, London, UK
| | - K. Ray Chaudhuri
- Parkinson’s Foundation International Centre of Excellence, King’s College Hospital, London, UK
- Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
- NIHR Mental Health Biomedical Research Centre and Dementia Biomedical Research Unit, South London and Maudsley NHS Foundation Trust and King’s College London, London, UK
| | - Haidar S. Dafsari
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Doreen Gruber
- Movement Disorders Hospital, Kliniken Beelitz GmbH, Beelitz-Heilstätten, Germany
- Department of Neurology, Otto-von-Guericke University Magdeburg, Magdeburg, Germany
| | - Georg Ebersbach
- Movement Disorders Hospital, Kliniken Beelitz GmbH, Beelitz-Heilstätten, Germany
| | - Josef Kessler
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Michael T. Barbe
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
| | - Anna Sauerbier
- Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
- Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK
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Warren A. The relationship between perceived stigma and perceived stress in cognitive decline: a survey of persons with mild cognitive impairment and their caregivers. Front Psychol 2023; 14:1293284. [PMID: 38144994 PMCID: PMC10740212 DOI: 10.3389/fpsyg.2023.1293284] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/12/2023] [Accepted: 11/22/2023] [Indexed: 12/26/2023] Open
Abstract
Introduction While Alzheimer's disease and other causes of dementia have rapidly become a global health crisis with growing incidence that is unabated, the incidence of Mild Cognitive Impairment (MCI) far exceeds that of Alzheimer's disease. Persons with MCI demonstrate some level of cognitive impairment, but daily functions remain intact and there is no certainty that they will develop dementia. Yet, the possibility conjures a considerable amount of fear and anxiety, further fueled by a vast array of misconceptions and stigma. The pervasive nature of this stigma permeates society and culture at many levels. Persons with MCI who are at higher risk for development of dementia may be especially vulnerable to fear and stigma associated with the diagnosis. Based on this premise, the primary aim of this study was to examine the relationship between perceived stigma and perceived stress in persons with MCI and their care partners, including the relationship between income and the study variables. The secondary aim was to examine the effect of a combined cognitive rehabilitation and wellness program on these perceptions. Methods Thirty participants were recruited from Mayo Clinic's Health Action to Benefit Independence and Thinking (HABIT) program. MCI (n = 15) and care partner (n = 15) participants completed the Stigma Impact Scale (SIS) and the Perceived Stress Scale (PSS) before and after the HABIT program. Results Average SIS and PSS scores decreased in the MCI, care partner, and combined groups, both pre- and post-HABIT. Linear regression was used to assess the relationship between perceived stigma and stress, controlling for income. A significant relationship was found between perceived stigma and perceived stress both pre and post-HABIT. Discussion The results suggest a relationship exists between perceived stigma and perceived stress in persons with MCI and their care partners, and an educational program such as HABIT may strengthen this relationship by informing participants of potential challenges that occur in cognitive decline. Understanding these relationships may provide an opportunity to provide tools for this vulnerable population.
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Affiliation(s)
- Alison Warren
- The Department of Clinical Research and Leadership, George Washington University School of Medicine and Health Sciences, Washington, DC, United States
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43
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Brittain K, Brown K, Phillips T, Zerbe A, Pellowski J, Remien RH, Mellins CA, Abrams EJ, Myer L. Why do Integrated Maternal HIV and Infant Healthcare Services work? A Secondary Analysis of a Randomised Controlled Trial in South Africa. AIDS Behav 2023; 27:3831-3843. [PMID: 37306847 PMCID: PMC10598190 DOI: 10.1007/s10461-023-04097-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/20/2023] [Indexed: 06/13/2023]
Abstract
In a randomised trial, we found that integrated maternal HIV and infant health services through the end of breastfeeding were significantly associated with the primary outcome of engagement in HIV care and viral suppression at 12 months postpartum, compared to the standard of care. Here, we quantitatively explore potential psychosocial modifiers and mediators of this association. Our findings suggest that the intervention was significantly more effective among women experiencing an unintended pregnancy but did not improve outcomes among women reporting risky alcohol use. Although not statistically significant, our results suggest that the intervention may also be more effective among women experiencing higher levels of poverty and HIV-related stigma. We observed no definitive mediator of the intervention effect, but women allocated to integrated services reported better relationships with their healthcare providers through 12 months postpartum. These findings point to high-risk groups that may benefit the most from integrated care, as well as groups for whom these benefits are hampered and that warrant further attention in intervention development and evaluation.
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Affiliation(s)
- Kirsty Brittain
- Division of Epidemiology & Biostatistics, School of Public Health & Family Medicine, University of Cape Town, Anzio Road, Observatory, Cape Town, 7925, South Africa.
| | - Karryn Brown
- Division of Epidemiology & Biostatistics, School of Public Health & Family Medicine, University of Cape Town, Anzio Road, Observatory, Cape Town, 7925, South Africa
| | - Tamsin Phillips
- Division of Epidemiology & Biostatistics, School of Public Health & Family Medicine, University of Cape Town, Anzio Road, Observatory, Cape Town, 7925, South Africa
| | - Allison Zerbe
- Mailman School of Public Health, ICAP at Columbia University, Columbia University, New York, NY, USA
| | - Jennifer Pellowski
- Department of Behavioral & Social Sciences, Brown University School of Public Health, Providence, RI, USA
- International Health Institute, Brown University School of Public Health, Providence, RI, USA
| | - Robert H Remien
- New York State Psychiatric Institute, HIV Center for Clinical & Behavioral Studies, Columbia University, New York, NY, USA
| | - Claude A Mellins
- New York State Psychiatric Institute, HIV Center for Clinical & Behavioral Studies, Columbia University, New York, NY, USA
| | - Elaine J Abrams
- Mailman School of Public Health, ICAP at Columbia University, Columbia University, New York, NY, USA
- Department of Pediatrics, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY, USA
- Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY, USA
| | - Landon Myer
- Division of Epidemiology & Biostatistics, School of Public Health & Family Medicine, University of Cape Town, Anzio Road, Observatory, Cape Town, 7925, South Africa
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Zhu L, Song B, Han YS, Xu Y, Xun-Wang, Xue BC, Han YZ, Yang RM. Sexual dysfunction in Wilson disease: Prevalence and influencing factors. J Clin Neurosci 2023; 118:117-122. [PMID: 37922727 DOI: 10.1016/j.jocn.2023.10.018] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/22/2023] [Revised: 10/10/2023] [Accepted: 10/24/2023] [Indexed: 11/07/2023]
Abstract
Wilson disease is a rare neurogenetic disorder that receives significant attention due to its manifestations, such as jaundice, cirrhosis, tremor, dystonia, and others. However, the impact of Wilson disease on sexual function has been overlooked. In this study, we aimed to investigate current status of sexual dysfunction in Wilson disease. In this study, we investigated the sexual function status and possible influencing factors of 245 Wilson disease patients by questionnaire. Our study identified sexual dysfunction as a prevalent issue in Wilson disease patients, with an overall prevalence of 49.0 %, of which 33.9 % in males and 63.7 % in females, both higher than the prevalence of sexual dysfunction in the normal Chinese population. Compared with non-sexual dysfunction patients, sexual dysfunction was more common in the older age group, females, less educated, rural residence, no occupation, lower income, taking sedatives/antipsychotics, and high SIS scores (P < 0.05). Our binary logistic regression analysis revealed that older age (OR: 1.103, 95 %CI: 1.058-1.151, P < 0.001), being female (OR: 5.900,95 %CI: 2.966-11.736, P < 0.001), and the use of antipsychotics or sedatives (OR: 3.277,95 %CI: 1.065-10.077, P < 0.05) were all positively linked with an increased risk of sexual dysfunction. Despite the well-known symptoms of Wilson disease, sexual dysfunction is also a frequent issue in Wilson disease patients, necessitating further attention.
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Affiliation(s)
- Ling Zhu
- Department of Graduate, Anhui University of Chinese Medicine, Hefei 230011, China; Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Bin Song
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Yong-Sheng Han
- Department of Graduate, Anhui University of Chinese Medicine, Hefei 230011, China; Wannan Medical College, Wuhu 241002, China; The Third Clinical College of Anhui University of Chinese Medicine.
| | - Yin Xu
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Xun-Wang
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Ben-Chun Xue
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Yong-Zhu Han
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
| | - Ren-Min Yang
- Department of Neurology, Affiliated Hospital of Institute of Neurology, Anhui University of Chinese Medicine, Hefei 230012, China.
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Zheng S, Wang R, Zhang S, Ou Y, Sheng X, Yang M, Ge M, Xia L, Li J, Zhou X. Depression severity mediates stigma and quality of life in clinically stable people with schizophrenia in rural China. BMC Psychiatry 2023; 23:826. [PMID: 37951892 PMCID: PMC10640747 DOI: 10.1186/s12888-023-05355-x] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/02/2023] [Accepted: 11/07/2023] [Indexed: 11/14/2023] Open
Abstract
BACKGROUND Depressive symptoms associated with schizophrenia are closely related to stigma and quality of life(QOL). There is, however, no thorough research on the connection between the three. This study sought to investigate the possible factors influencing depressive symptoms in people with schizophrenia (PWS) in rural Chaohu, China, and to further explore the role of depression severity in stigma and lifestyle quality. METHODS Eight hundred twenty-one schizophrenia patients accomplished the entire scale, including the 9-item Patient Health Questionnaire (PHQ-9), the Social Impact Scale (SIS), and the World Health Organization on Quality of Life Brief Scale(WHOQOL-BREF). A straightforward mediation model was employed to determine if the intensity of the depression could act as a mediator between stigma and QOL. RESULTS Two hundred seventy-nine schizophrenia patients (34%) had depressive symptoms (PHQ ≥ 10), and 542 patients (66%) did not (PHQ < 10). Logistic regression showed that marital status, job status, physical exercise, standard of living, and stigma contributed to the depressed symptoms of schizophrenia. Depression severity partially mediated the effect between stigma and QOL, with a mediating effect of 48.3%. CONCLUSIONS This study discovered a significant incidence of depressed symptoms associated with schizophrenia, with depression severity serving as a mediator variable connecting stigma and QOL and partially moderating the association.
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Affiliation(s)
- Siyuan Zheng
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Ruoqi Wang
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Shaofei Zhang
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Yangxu Ou
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Xuanlian Sheng
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Meng Yang
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Menglin Ge
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Lei Xia
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Jun Li
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China
- Anhui Psychiatric Center, Hefei City, China
| | - Xiaoqin Zhou
- School of Mental Health and Psychological Sciences, Anhui Medical University, Hefei City, China.
- Department of Psychiatry, Chaohu Hospital of Anhui Medical University, Hefei City, China.
- Anhui Psychiatric Center, Hefei City, China.
- Department of Psychology and Sleep Medicine, The Second Affiliated Hospital of Anhui Medical University, Hefei City, China.
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Streck JM, Lee JW, Walter AW, Rosen RL, Gareen IF, Kircher SM, Herman BA, Carlos RC, Kumar S, Mayer IA, Saba NF, Fenske TS, Neal JW, Atkins MB, Hodi FS, Kyriakopoulos CE, Tempany C, Shanafelt TD, Wagner LI, Land SR, Park ER, Ostroff JS. Cigarette and Alternative Tobacco Product Use among Adult Cancer Survivors Enrolled in 9 ECOG-ACRIN Clinical Trials. Cancer Epidemiol Biomarkers Prev 2023; 32:1552-1557. [PMID: 37410096 PMCID: PMC10773003 DOI: 10.1158/1055-9965.epi-23-0420] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/17/2023] [Revised: 06/06/2023] [Accepted: 06/30/2023] [Indexed: 07/07/2023] Open
Abstract
BACKGROUND While cigarette smoking has declined among the U.S. general population, sale and use of non-cigarette alternative tobacco products (ATP; e.g., e-cigarettes, cigars) and dual use of cigarettes/ATPs are rising. Little is known about ATP use patterns in cancer survivors enrolled in clinical trials. We investigated prevalence of tobacco product use, and factors associated with past 30-day use, among patients with cancer in national trials. METHODS Cancer survivors (N = 756) enrolled in 9 ECOG-ACRIN clinical trials (2017-2021) completed a modified Cancer Patient Tobacco Use Questionnaire (C-TUQ) which assessed baseline cigarette and ATP use since cancer diagnosis and in the past 30 days. RESULTS Patients were on average 59 years old, 70% male, and the mean time since cancer diagnosis was 26 months. Since diagnosis, cigarettes (21%) were the most common tobacco product used, followed by smokeless tobacco use (5%), cigars (4%), and e-cigarettes (2%). In the past 30 days, 12% of patients reported smoking cigarettes, 4% cigars, 4% using smokeless tobacco, and 2% e-cigarettes. Since cancer diagnosis, 5.5% of the sample reported multiple tobacco product use, and 3.0% reported multiple product use in the past 30 days. Males (vs. females; OR 4.33; P = 0 < 0.01) and individuals not living with another person who smokes (vs. living with; OR, 8.07; P = 0 < 0.01) were more likely to use ATPs only versus cigarettes only in the past 30 days. CONCLUSIONS Among patients with cancer, cigarettes were the most prevalent tobacco product reported. IMPACT Regardless, ATPs and multiple tobacco product use should be routinely assessed in cancer care settings.
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Affiliation(s)
| | - Ju-Whei Lee
- Dana-Farber Cancer Institute/ECOG-ACRIN Biostatistics Center
| | | | | | | | | | | | | | | | | | | | | | | | | | - F. Stephen Hodi
- Dana-Farber Cancer Institute/ECOG-ACRIN Biostatistics Center
| | | | | | | | | | | | - Elyse R. Park
- Massachusetts General Hospital/Harvard Medical School
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Wu J, Zeng N, Wang L, Yao L. The stigma in patients with breast cancer: A concept analysis. Asia Pac J Oncol Nurs 2023; 10:100293. [PMID: 37886719 PMCID: PMC10597826 DOI: 10.1016/j.apjon.2023.100293] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/29/2023] [Accepted: 08/07/2023] [Indexed: 10/28/2023] Open
Abstract
Objective Stigma is a common problem among patients having breast cancer. However, the concept of stigma is vague and not specifically described or clearly defined in the literature. The lack of description or definition has further limited stigma research among patients having breast cancer. Therefore, this study aimed to clarify and analyze the concept of stigma in patients with breast cancer. Methods Walker and Avant's concept analysis method was applied to analyze the connotation of stigma in patients with breast cancer. PubMed, Web of Science, PsycINFO, CNKI, Wanfang, VIP, and SinoMed databases were searched from inception until May 31, 2023. Results Five stigma-related attributes of patients having breast cancer were identified: (1) impaired body image and physiological function; (2) negative stereotypes; (3) mixed negative feelings about developing breast cancer; (4) a feeling of avoidance; (5) experienced discrimination. Antecedents included the implementation of breast surgery and postoperative time, negative psychological factors, lack of social support, and cultural beliefs. This stigma among patients having breast cancer had significant negative effects on their quality of individual life and marriage, postoperative rehabilitation, and healthcare-seeking behavior. Conclusions The concept analysis results clarified the concept of stigma in patients with breast cancer and provided theoretical guidance for the development of the conceptual model of stigma in these patients. What is more, it offered a theoretical basis for future studies related to the development of stigma assessment tools for breast cancer patients and for devising nursing intervention strategies.
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Affiliation(s)
- Jieming Wu
- School of Nursing, Hangzhou Normal University, Hangzhou, China
| | - Ni Zeng
- School of Nursing, Hangzhou Normal University, Hangzhou, China
| | - Liping Wang
- School of Nursing, Hangzhou Normal University, Hangzhou, China
| | - Liyan Yao
- School of Nursing, Hangzhou Normal University, Hangzhou, China
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48
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Deng Z, Bernot A, Davies SE. Perceived stigma of COVID-19 patients in Shanghai, China, in the third year of the pandemic: a cross-sectional social impact survey. BMC Public Health 2023; 23:1709. [PMID: 37667221 PMCID: PMC10476326 DOI: 10.1186/s12889-023-16604-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2023] [Accepted: 08/24/2023] [Indexed: 09/06/2023] Open
Abstract
INTRODUCTION Social stigma associated with Covid-19 infection has been reported around the world. This paper investigates the level of self-reported perceived stigma among people infected with COVID-19 in Shanghai, China, in the third year of the pandemic to determine changes in perceived stigma and individual level variables associated with perceived stigma. METHODS We conducted a self-reported two-part online survey (n = 144 responses) by employing a convenience sampling method of COVID-19 patients in Shanghai. The first part of the survey collects sociodemographic information of the respondents and the second part outlines 24 items of the Social Impact Scale (SIS), which measures individual level factors associated with stigma, namely social rejection, financial insecurity, internalized shame, and social isolation. We ran Wilcoxon signed-ranks test, Kruskal-Wallis test, and linear regression analysis to assess the levels of perceived stigma differences. RESULTS The study finds that the overall level of self-reported stigma during the COVID-19 lockdowns in Shanghai in 2022 was at a lower level than that compared to the self-reported perceived stigma study in Wuhan in 2020. In Shanghai, the severity of the disease and hospitalization length had most impact on financial insecurity and feelings of social isolation. These experiences were not gendered. Recovery measures, including economic considerations, need to pay particular attention to those who experienced severe disease.
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Affiliation(s)
- Ziru Deng
- School of Public Health, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong, China
| | - Ausma Bernot
- School of Criminology and Criminal Justice, Griffith University, 176 Messines Ridge Road, Mt Gravatt, QLD, 4122, Australia.
| | - Sara E Davies
- School of Government and International Relations, Griffith University, Nathan, QLD, 4111, Australia
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Zhang J, Ding L, Wu Y, Yao M, Ma Q. Perceived stigma in burn survivors: Associations with resourcefulness and alexithymia. Burns 2023; 49:1448-1456. [PMID: 36646574 DOI: 10.1016/j.burns.2022.12.018] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/05/2022] [Revised: 12/09/2022] [Accepted: 12/28/2022] [Indexed: 01/05/2023]
Abstract
OBJECTIVE Burn survivors often have severe scarring and distorted body image, and they are commonly given new perceptions and even receive a variety of negative labels from individuals, families and society. This study aimed to explore the association between stigma, resourcefulness and alexithymia, and identifies whether resourcefulness in burn survivors is mediating the relationship between resourcefulness and alexithymia. METHOD This correlational study was conducted from December 2021 to July 2022 in a comprehensive tertiary Grade A hospital in Ningxia, China. A convenience sample of 159 burn survivors was recruited. Data were collected using demographics, Social Impact Scale(SIC),Toronto Alexithymia Scale, and Resourcefulness Scale (RS). Descriptive analysis, Hierarchical Regression analysis, Pearson Correlation analysis, and Mediation analysis were used for data analysis. RESULTS Finally, a data set of 148 responses was determined for analysis. The effective rate was 95.9%. We found significant correlation between stigma, resourcefulness and alexithymia. Sociodemographic characteristics (gender, spouse states), clinical characteristics (body surface burned area, scar areas), resourcefulness and alexithymia of burn survivors were significant predictors of stigma among burn survivors. The mediating effect of resourcefulness between stigma and alexithymia in burns survivors accounted for 36.03% of the total effect. CONCLUSION Resourcefulness partially mediates the relationship between stigma and alexithymia. These findings suggest medical staff should strengthen the management of the mental health of burn survivors and eliminate the negative cognition and tendency of burn survivors by regularly promoting stigma counseling measures based on cognitive behavioral therapy. Based on the resourcefulness theory, psychological counseling and intervention are carried out in various ways to fully mobilize their internal factors for positive emotional regulation and enhance the ability of individuals to cope with adversity. In addition, an attempt was made to establish an "anti-stigma coalition" or "peer support group" for burn survivors to provide networked information support and emotional support to facilitate further the smooth return of patients to their families and society.
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Affiliation(s)
- Juan Zhang
- Department of Burns and Plastic Surgery, General Hospital of Ningxia Medical University, Yinchuan City, Ningxia Hui Autonomous Region, China.
| | - Liyan Ding
- Department of Endocrinology, General Hospital of Ningxia Medical University, Yinchuan City, Ningxia Hui Autonomous Region, China
| | - Yuexiang Wu
- Wound Stomy Clinic, General Hospital of Ningxia Medical University, Yinchuan City, Ningxia Hui Autonomous Region, China
| | - Miao Yao
- Department of Burns and Plastic Surgery, General Hospital of Ningxia Medical University, Yinchuan City, Ningxia Hui Autonomous Region, China
| | - Qiang Ma
- Department of Burns and Plastic Surgery, General Hospital of Ningxia Medical University, Yinchuan City, Ningxia Hui Autonomous Region, China
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Rudzinski K, King K, Guta A, Chan Carusone S, Strike C. "And if my goal is never to leave Casey House?": The significance of place attachment for patients at a specialty HIV hospital in Toronto, Canada. Health Place 2023; 83:103100. [PMID: 37595542 DOI: 10.1016/j.healthplace.2023.103100] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/24/2023] [Revised: 07/17/2023] [Accepted: 08/09/2023] [Indexed: 08/20/2023]
Abstract
The current healthcare context prioritizes shorter hospital stays and fewer readmissions. However, these measures may not fully capture care experiences for people living with HIV, especially those experiencing medical, psychosocial, and economic complexity. As part of a larger study, we conducted seven focus groups with people living with HIV (n = 52), who were current/former patients at a Toronto-based specialty hospital, examining their desires/needs for hospital programs. Using a novel place attachment lens, we conducted a thematic analysis focusing on the emotional bond between person (patient) and place (hospital). Our findings show that participants wanted an ongoing connection to hospital to fulfill their need(s) for control, security, restoration and belonging. Indeed, continual attachment to hospital may be beneficial for patients with complex care needs. Our research has implications for care engagement and retention frameworks.
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Affiliation(s)
- Katherine Rudzinski
- School of Social Work, University of Windsor, 167 Ferry Street, Windsor, ON, N9A 0C5, Canada; Dalla Lana School of Public Health, University of Toronto, 155 College St., Toronto, ON, M5T 3M7, Canada.
| | - Kenneth King
- Dalla Lana School of Public Health, University of Toronto, 155 College St., Toronto, ON, M5T 3M7, Canada
| | - Adrian Guta
- School of Social Work, University of Windsor, 167 Ferry Street, Windsor, ON, N9A 0C5, Canada.
| | | | - Carol Strike
- Dalla Lana School of Public Health, University of Toronto, 155 College St., Toronto, ON, M5T 3M7, Canada.
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