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PLoS Neglected Tropical Diseases Dec 2023Cutaneous (CL) and mucocutaneous leishmaniasis (MCL) are parasitic diseases caused by parasites of the genus leishmania leading to stigma caused by disfigurations. This...
BACKGROUND
Cutaneous (CL) and mucocutaneous leishmaniasis (MCL) are parasitic diseases caused by parasites of the genus leishmania leading to stigma caused by disfigurations. This study aimed to systematically review the dimensions, measurement methods, implications, and potential interventions done to reduce the CL- and MCL- associated stigma, synthesising the current evidence according to an accepted stigma framework.
METHODS
This systematic review followed the PRISMA guidelines and was registered in PROSPERO (ID- CRD42021274925). The eligibility criteria included primary articles discussing stigma associated with CL and MCL published in English, Spanish, or Portuguese up to January 2023. An electronic search was conducted in Medline, Embase, Scopus, PubMed, EBSCO, Web of Science, Global Index Medicus, Trip, and Cochrane Library. The mixed methods appraisal tool (MMAT) was used for quality checking. A narrative synthesis was conducted to summarise the findings.
RESULTS
A total of 16 studies were included. The studies report the cognitive, affective, and behavioural reactions associated with public stigma. Cognitive reactions included misbeliefs about the disease transmission and treatment, and death. Affective reactions encompass emotions like disgust and shame, often triggered by the presence of scars. Behavioural reactions included avoidance, discrimination, rejection, mockery, and disruptions of interpersonal relationships. The review also highlights self-stigma manifestations, including enacted, internalised, and felt stigma. Enacted stigma manifested as barriers to forming proper interpersonal relationships, avoidance, isolation, and perceiving CL lesions/scars as marks of shame. Felt stigma led to experiences of marginalisation, rejection, mockery, disruptions of interpersonal relationships, the anticipation of discrimination, fear of social stigmatisation, and facing disgust. Internalised stigma affected self-identity and caused psychological distress.
CONCLUSIONS
There are various manifestations of stigma associated with CL and MCL. This review highlights the lack of knowledge on the structural stigma associated with CL, the lack of stigma interventions and the need for a unique stigma tool to measure stigma associated with CL and MCL.
Topics: Humans; Leishmaniasis, Mucocutaneous; Cicatrix; Social Stigma; Stereotyping; Fear; Leishmaniasis, Cutaneous
PubMed: 38153950
DOI: 10.1371/journal.pntd.0011818 -
Clinical Psychology Review Nov 2019Self-harm is a major public health concern associated with suicide risk and significant psychological distress. Theories suggest that aversive emotional states are an... (Meta-Analysis)
Meta-Analysis
Self-harm is a major public health concern associated with suicide risk and significant psychological distress. Theories suggest that aversive emotional states are an important process that drives self-harm. Shame and guilt may, in particular, be important emotions in self-harm. This review therefore sought to provide a systematic review and meta-analysis of the relationship between shame, guilt, and self-harm. A systematic search of electronic databases (PsycINFO; Medline; CINAHL Plus; Web of Science and ProQuest) was undertaken to identify studies measuring shame, guilt and self-harm (including suicidal and non-suicidal behaviour). Meta-analysis was undertaken where papers focused on the same subtype of shame or guilt and shared a common outcome. Thirty studies were identified for inclusion. Most forms of shame were associated with non-suicidal self-injury (NSSI), but research was sparse concerning suicidal behaviour. Fewer studies examined guilt and findings were more varied. Methodological issues included a paucity of longitudinal designs and lack of justification for sample sizes. Results of this review support the link between shame and self-harm, particularly NSSI. The direction of this relationship is yet to be established. Clinically, consideration should be given to the role of shame amongst individuals who present with NSSI. This review was pre-registered on PROSPERO (CRD42017056165).
Topics: Guilt; Humans; Self-Injurious Behavior; Shame
PubMed: 31707184
DOI: 10.1016/j.cpr.2019.101779 -
International Journal of Geriatric... Jan 2011To explore why people from minority ethnic (ME) groups with dementia present later to specialist diagnostic and therapeutic dementia services. We systematically reviewed... (Review)
Review
OBJECTIVE
To explore why people from minority ethnic (ME) groups with dementia present later to specialist diagnostic and therapeutic dementia services. We systematically reviewed the literature exploring how and why ME people with dementia present to specialist services.
METHOD
We included qualitative and quantitative studies that explored pathways to dementia specialist care in ME groups or determinants of whether ME people with dementia accessed specialist services. Included studies were independently evaluated for quality by two authors.
RESULTS
We found 3 quantitative and 10 qualitative papers meeting our inclusion criteria. Barriers to accessing specialist help for dementia included: not conceptualizing dementia as an illness; believing dementia was a normal consequence of ageing; thinking dementia had spiritual, psychological, physical health or social causes; feeling that caring for the person with dementia was a personal or family responsibility; experiences of shame and stigma within the community; believing there was nothing that could be done to help; and negative experiences of healthcare services. Recognition of dementia as an illness and knowledge about dementia facilitated accessing help.
CONCLUSIONS
There are significant barriers to help seeking for dementia in ME groups. These may explain why people from ME groups often presented to therapeutic and diagnostic services at a late stage in their illness. Further study is needed to elucidate the role that ethnicity and culture play in the help-seeking pathway for dementia, and to design and test interventions to improve equity of access to healthcare services.
Topics: Dementia; Ethnicity; Humans; Mental Health Services; Minority Groups; Patient Acceptance of Health Care; Social Perception; Time Factors
PubMed: 21157846
DOI: 10.1002/gps.2484 -
Journal of Hospice and Palliative... Apr 2021Those involved with hospice and palliative care, including nurses, will inevitably experience or be exposed to suffering. Self-compassion represents a personal resource...
Those involved with hospice and palliative care, including nurses, will inevitably experience or be exposed to suffering. Self-compassion represents a personal resource and support for self-care, ensuring that needs are not neglected particularly during times of suffering. However, the empirical evidence for self-compassion in hospice and palliative care is yet to be reviewed systematically. To synthesize the evidence on self-compassion in hospice and palliative care patients, their relatives, and health care professionals, we conducted a systematic integrative review using the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement. For patients, self-compassion was associated with reduced stress, anxiety, shame, depressive symptoms, fear of cancer recurrence, and loneliness. It was also associated with increased social capital, self-soothing, mindfulness, compassion, causal reasoning ability, psychosocial and spiritual well-being, legacy, courage, and commitment. For health care professionals, self-compassion was associated with increased capacity for self-care, mindfulness, and professional quality of life and a decrease in perceived burnout risk and secondary traumatic stress. No studies were found to involve patients' relatives. Self-compassion seems to be an important resource in hospice and palliative care. It supports self-care and alleviates suffering by improving the social, psychosocial, and spiritual well-being of patients and health care professionals, including hospice and palliative care nurses. Future research should include care patients' relatives.
Topics: Empathy; Hospice Care; Hospices; Humans; Palliative Care; Quality of Life
PubMed: 33633095
DOI: 10.1097/NJH.0000000000000727 -
BMJ Military Health Nov 2022Individuals who have been exposed to a traumatic event can develop profound feelings of guilt, shame and anger. Yet, studies of treatments for post-traumatic stress...
INTRODUCTION
Individuals who have been exposed to a traumatic event can develop profound feelings of guilt, shame and anger. Yet, studies of treatments for post-traumatic stress disorder (PTSD) have largely investigated changes in PTSD symptoms relating to a sense of ongoing fear or threat and the effectiveness of such treatments for post-trauma related guilt, shame or anger symptom reduction is comparatively not well understood.
METHODS
This review systematically examined the effectiveness of existing treatment approaches for three symptoms associated with exposure to traumatic events: guilt, shame and anger. Studies included had to be published after 2010 with a sample size of n=50 or greater to ensure stable treatment outcome estimates.
RESULTS
15 studies were included, consisting of both civilian and (ex-) military population samples exposed to a wide range of traumatic events (eg, combat-related, sexual abuse). Findings indicated a moderate strength of evidence that both cognitive-based and exposure-based treatments are similarly effective in reducing symptoms. Cognitive-based treatments were found to effectively reduce post-trauma related guilt and anger, while exposure-based treatments appeared effective for post-trauma related guilt, shame and anger.
CONCLUSIONS
The findings suggest the importance of confronting and discussing the traumatic event during therapy, rather than using less directive treatments (eg, supportive counselling).Nonetheless, while these results are promising, firm conclusions regarding the comparative effectiveness and long-term impact of these treatments could not be drawn due to insufficient evidence. Further empirical research is needed to examine populations exposed to traumatic events and investigate which treatment approaches (or combination thereof) are more effective in the long-term.
PubMed: 36442888
DOI: 10.1136/military-2022-002155 -
Perspectives in Public Health Mar 2018Health literacy (HL) is a multifaceted concept, thus understanding the perspective of healthcare providers, patients, and the system is vital. This systematic review... (Review)
Review
AIM
Health literacy (HL) is a multifaceted concept, thus understanding the perspective of healthcare providers, patients, and the system is vital. This systematic review examines and synthesises the available studies on HL-related knowledge, attitude, practice, and perceived barriers.
METHODS
CINAHL and Medline (via EBSCOhost), Google Scholar, PubMed, ProQuest, Sage Journals, and Science Direct were searched. Both quantitative and/or qualitative studies in the English language were included. Intervention studies and studies focusing on HL assessment tools and prevalence of low HL were excluded. The risk of biasness reduced with the involvement of two reviewers independently assessing study eligibility and quality.
RESULTS
A total of 30 studies were included, which consist of 19 quantitative, 9 qualitative, and 2 mixed-method studies. Out of 17 studies, 13 reported deficiency of HL-related knowledge among healthcare providers and 1 among patients. Three studies showed a positive attitude of healthcare providers towards learning about HL. Another three studies demonstrated patients feel shame exposing their literacy and undergoing HL assessment. Common HL communication techniques reported practiced by healthcare providers were the use of everyday language, teach-back method, and providing patients with reading materials and aids, while time constraint was the most reported HL perceived barriers by both healthcare providers and patients.
CONCLUSION
Significant gaps exists in HL knowledge among healthcare providers and patients that needs immediate intervention. Such as, greater effort placed in creating a health system that provides an opportunity for healthcare providers to learn about HL and patients to access health information with taking consideration of their perceived barriers.
Topics: Attitude of Health Personnel; Communication; Health Knowledge, Attitudes, Practice; Health Literacy; Health Personnel; Humans; Patients
PubMed: 28980881
DOI: 10.1177/1757913917733775 -
The Pan African Medical Journal 2021in the Gambia, adolescents and young people make up 32% of the national population. Observations indicate that this population group lack access to quality information...
INTRODUCTION
in the Gambia, adolescents and young people make up 32% of the national population. Observations indicate that this population group lack access to quality information and services on sexual and reproductive health. This systematic review explored some sexual and reproductive health indicators relevant to adolescents and young people in the Gambia.
METHODS
published studies on some sexual and reproductive health indicators were searched in PubMed, Google Scholar and African Journals Online. Moreover, national reference documents containing relevant in-country data on adolescents and young people's sexual and reproductive health were also collected and reviewed. Search terms for published studies focused on modern contraceptives, sexually transmitted infections (STIs) prevalence rates, availability and accessibility to sexual and reproductive health (SRH) services and adolescents and young people's satisfaction with SRH services among adolescents and young people (aged 10-24 years).
RESULTS
the review showed that contraceptive prevalence rates among adolescents and young people in Gambia ranged from 7% to 9%. Reasons for low contraceptive prevalence among adolescents and young people included limited knowledge and access to sexual and reproductive health information and services, provider attitudes, stigma, shame, lack of money, cultural and religious misconceptions associated with contraception. Overall, the review found limited information on STI prevalence among adolescents and young people, with a single published study reporting a prevalence rate of 8.4%. In addition, inadequate counseling, complaints related to physical environment as well as the process of providing sexual and reproductive health services and information were significant factors associated with satisfaction with SRH services among adolescents and young people.
CONCLUSION
this review provides important baseline data that may be useful for policymakers and program managers to improve adolescents and young people's sexual and reproductive health in Gambia.
Topics: Adolescent; Adult; Child; Contraception; Gambia; Humans; Reproductive Health; Reproductive Health Services; Sexual Behavior; Sexual Health; Young Adult
PubMed: 35145583
DOI: 10.11604/pamj.2021.40.221.25774 -
Ethiopian Journal of Health Sciences Sep 2020Adolescent-parent sexual communication is an effective strategy to make healthy decisions, delay and protect from risky behavior. Thus, this systematic review and... (Meta-Analysis)
Meta-Analysis Review
UNLABELLED
Adolescent-parent sexual communication is an effective strategy to make healthy decisions, delay and protect from risky behavior. Thus, this systematic review and meta-analysis aimed to synthesize and estimate the level of adolescent- parent communication on sexual and reproductive health issues in Ethiopia.
METHODS
Cross-sectional studies were systematically searched using databases such as PubMed, Google Scholar, Cochrane Library and gray literature. Information was extracted using a standardized form of JBI. Data were analyzed using the 'meta' packages of the Stata software (version 11.0). I-squared statistic was applied to check the heterogeneity of studies. Funnel plot and Egger's test were used to check for publication bias. P-value <0.05 on the Egger test was considered indicative of statistically significant publication bias.
RESULTS
A total of 359 articles were identified, of which 19 were eligible for meta-analysis. Adolescent-parent communications on SRH issues were significantly reported within the range of 25.3% to 36.9% and more preferred to discuss with their friends. The overall pooled level of adolescent parent communication was 40.70 (95%CI: 34.26-47.15). Adolescents who lived in urban areas, having good knowledge of SRH issues, adolescents who agreed on the importance of discussion and adolescents who ever had sexual intercourse were more likely to discuss SRH issues with their parents.
CONCLUSION
The overall pooled level of adolescent-parent communication was 40.70%, and also adolescent-parent communications were dominantly reported with the ranges of 25.3% to 36.9%. Being urban dweller, being knowledgeable, and being agreed on the importance of discussion were significantly associated with adolescent-parent communication. Cultural taboo, shame and lack of communication skills were reasons that hindered communication between parents and adolescents. Therefore, program implementers should work to increase adolescent-parent communication.
Topics: Adolescent; Communication; Cross-Sectional Studies; Ethiopia; Humans; Parents; Reproductive Health
PubMed: 33911844
DOI: 10.4314/ejhs.v30i5.22 -
Ontario Health Technology Assessment... 2012In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the... (Review)
Review
UNLABELLED
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions. After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses. The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html. Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework. Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis. Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model. Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature. For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm. For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx. The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
OBJECTIVE OF ANALYSIS
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
CLINICAL NEED AND TARGET POPULATION
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
RESEARCH QUESTION
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
RESEARCH METHODS
LITERATURE SEARCH: SEARCH STRATEGY: Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc. INCLUSION CRITERIA: English-language full reports: studies published between January 1, 2000, and November 2010; primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research; studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly. EXCLUSION CRITERIA: studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables); quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms); studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data. OUTCOMES OF INTEREST: qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD.
SUMMARY OF FINDINGS
EXPERIENCES AT DIAGNOSIS: Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD. Many patients initially misunderstand terms such as or Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease. Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame. EXPERIENCES OF LIVING DAY TO DAY: COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life. Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult. Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need. For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy. Many of the factors that isolate COPD patients from social contact also isolate them from health care. EXPERIENCES OF EXACERBATIONS: Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection. Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines. Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports. EXPERIENCES OF THE END OF LIFE: Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses. As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined. Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions. Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”. EXPERIENCES OF CARERS: Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation. Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough. Carers often face their own health problems and may have difficulty sustaining employment. SYNTHESIS: A DISEASE TRAJECTORY REFLECTING PATIENT EXPERIENCES: The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
Topics: Activities of Daily Living; Caregivers; Health Personnel; Humans; Pulmonary Disease, Chronic Obstructive; Qualitative Research
PubMed: 23074423
DOI: No ID Found -
PeerJ 2015Background. Shame has been associated with a range of maladaptive behaviours, including substance use. Young people may be particularly vulnerable to heightened shame...
Background. Shame has been associated with a range of maladaptive behaviours, including substance use. Young people may be particularly vulnerable to heightened shame sensitivity, and substance use is a significant problem amongst UK adolescents. Although there appears to be a relationship between shame and substance use, the direction of the relationship remains unclear. Aim. The purpose of this study was to undertake a systematic review of the literature relating to shame and substance use in young people. Method. Five electronic databases were searched for articles containing terms related to 'adolescence,' 'shame' and 'substance use.' Six articles were included in the final analyses. Results. Adverse early experiences, particularly sexual abuse, predict shame-proneness, and substance use is a mechanism by which some individuals cope with negative feelings. In general, there is a dearth of literature investigating the shame-substance use relationship in adolescent samples. The available literature associates shame-proneness with poorer functioning and suggests that it may potentially lead to psychopathology and early-onset substance use. Scant attention has been paid to the cognitive and emotional processes implicated. Further research is required to ascertain the strength of the shame-substance use relationship in young people and to develop appropriate interventions for this population.
PubMed: 25649509
DOI: 10.7717/peerj.737