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1.
PLoS Negl Trop Dis ; 18(8): e0012342, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39137215

RESUMEN

INTRODUCTION: Leprosy and lymphatic filariasis (LF) are among the most disabling neglected tropical diseases (NTDs) that affect the citizens of Mozambique, especially in the Northern provinces. The irreversible impairments caused by these NTDs often lead to psychosocial consequences, including poor mental wellbeing, stigma and reduced social participation. Limited data on these consequences are available for Mozambique, which are urgently needed to better understand the true disease burden and support advocacy for scaling up interventions. METHODS: A cross-sectional mixed-methods study was conducted. Mental distress was assessed with the Self Reporting Questionnaire (SRQ-20), participation restriction was assessed with the Participation Scale Short (PSS) and perceived stigma was assessed with the Explanatory Model Interview Catalogue affected persons stigma scale (EMIC-AP). Additionally, semi-structured interviews were conducted with persons affected by leprosy or LF. RESULTS: In total, 127 persons affected by leprosy and 184 persons affected by LF were included in the quantitative portion of the study. For the qualitative portion, eight semi-structured interviews were conducted. In both disease groups, mental distress was found in 70% of participants. Moreover, 80% of persons affected by leprosy and 90% of persons affected by LF perceived stigma. Moderate to extreme participation restriction was found in approximately 43% of persons affected by leprosy and in 26% of the persons affected by LF. Persons affected by leprosy and LF felt excluded from society and experienced financial problems. More severe disabilities were associated with more severe outcomes for mental wellbeing, participation restriction and stigma. By contrast, participation in a self-care group was suggested to have a positive impact on these outcomes. CONCLUSION: The findings provide evidence that persons affected by leprosy and LF must not only confront physical impairments but also experience significant disability in the psychosocial domain, including mental distress, participation restriction and stigma. These challenges must be urgently addressed by NTD programmes to promote the inclusion and wellbeing of persons affected by NTDs.


Asunto(s)
Personas con Discapacidad , Filariasis Linfática , Lepra , Estigma Social , Humanos , Lepra/psicología , Lepra/epidemiología , Masculino , Femenino , Filariasis Linfática/psicología , Filariasis Linfática/epidemiología , Adulto , Estudios Transversales , Persona de Mediana Edad , Mozambique/epidemiología , Personas con Discapacidad/psicología , Adulto Joven , Anciano , Adolescente , Encuestas y Cuestionarios , Costo de Enfermedad , Enfermedades Desatendidas/psicología , Enfermedades Desatendidas/epidemiología
2.
Rev Bras Enferm ; 77Suppl 3(Suppl 3): e20230101, 2024.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-39016428

RESUMEN

OBJECTIVES: to identify and synthesize, from the literature, the impacts of physical disability caused by leprosy on the quality of life of individuals receiving care within the Health Care Network. METHODS: this is a scoping review conducted following the JBI recommendations. The databases used in the search included the Medical Literature Analysis and Retrieval System Online, Cochrane Library, Web of Science, Lilacs, Cumulative Index to Nursing and Allied Health Literature, Scopus, Embase, Leprosy Information Services, and Google Scholar. RESULTS: 1690 documents were identified, of which 36 were included in the review. Physical disability caused by leprosy affects the quality of life in the areas of daily activities, socioeconomic aspects, psychological well-being, pain, and overall well-being. CONCLUSIONS: we identified the impairments caused by physical disability in the quality of life, highlighting the need for prevention, promotion, and rehabilitation actions, such as screening, case management, and health education.


Asunto(s)
Personas con Discapacidad , Lepra , Calidad de Vida , Lepra/psicología , Lepra/complicaciones , Humanos , Calidad de Vida/psicología , Personas con Discapacidad/psicología
3.
PLoS One ; 19(6): e0304786, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38885248

RESUMEN

BACKGROUND: Skin neglected tropical diseases including leprosy and Buruli ulcer (BU)are a group of stigmatizing and disability-inducing conditions and these aspects of the diseases could lead to poor mental health. The study was designed to assess the burden of poor mental health and wellbeing among persons affected by leprosy or BU in Nigeria. METHODS: A community based cross-sectional study design was employed. The study involved persons affected by leprosy or BU. Ten local government areas with the highest number of notified leprosy or BU cases between 2014 and 2018 in southern Nigeria were purposively selected. Information were obtained using Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorders-7 (GAD-7), Warwick-Edinburgh Mental Well-being Scale (WEMWBS) and OSLO Social Support Scale. Outcome measure was poor mental health/wellbeing and was determined by proportion of respondents who had depressive symptoms, anxiety disorder and poor mental wellbeing. RESULTS: A total of 635 persons affected by leprosy or BU participated in the study. The mean age of respondents was 43.8±17.0 years and highest proportion, 22.2% were in age group, 40-49 years. Majority of respondents, 50.7% were males. A higher proportion of respondents, 89.9% had depressive symptoms, 79.4% had anxiety disorders and 66.1% had poor mental wellbeing. Majority, 57.2% had poor mental health/wellbeing. Among the respondents, there was a strong positive correlation between depression and anxiety scores, (r = 0.772, p<0.001). There was a weak negative correlation between depression score and WEMWBS score, (r = -0.457, p<0.001); anxiety score and WEMWBS score, (r = -0.483, p<0.001). Predictors of poor mental health/wellbeing included having no formal education, (AOR = 1.9, 95%CI: 1.1-3.3), being unemployed, (AOR = 3.4, 95%CI: 2.2-5.3), being affected by leprosy, (AOR = 0.2, 95%CI: 0.1-0.4) and having poor social support, (AOR = 6.6, 95%CI: 3.7-11.8). CONCLUSIONS: The burden of poor mental health/wellbeing among persons affected by leprosy or BU is very high. There is need to include mental health interventions in the management of persons affected with leprosy or BU. Equally important is finding a feasible, cost-effective and sustainable approach to delivering mental health care for persons affected with leprosy or BU at the community level. Improving educational status and social support of persons affected by leprosy or BU are essential. Engaging them in productive activities will be of essence.


Asunto(s)
Úlcera de Buruli , Depresión , Lepra , Salud Mental , Humanos , Lepra/psicología , Lepra/epidemiología , Masculino , Nigeria/epidemiología , Femenino , Úlcera de Buruli/epidemiología , Úlcera de Buruli/psicología , Adulto , Estudios Transversales , Persona de Mediana Edad , Depresión/epidemiología , Depresión/psicología , Adulto Joven , Adolescente , Anciano , Apoyo Social , Encuestas y Cuestionarios
4.
Int J Equity Health ; 23(1): 98, 2024 May 13.
Artículo en Inglés | MEDLINE | ID: mdl-38741119

RESUMEN

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.


Asunto(s)
Lepra , Investigación Cualitativa , Humanos , Lepra/psicología , Lepra/terapia , Lepra/diagnóstico , Colombia , Femenino , Masculino , Adulto , Persona de Mediana Edad , Anciano , Adulto Joven , Diagnóstico Tardío/psicología , Grupo Paritario , Personas con Discapacidad/psicología
5.
Int Health ; 16(Supplement_1): i9-i11, 2024 Mar 28.
Artículo en Inglés | MEDLINE | ID: mdl-38547342

RESUMEN

Leprosy continues to be stigmatized, causing harm to fundamental rights, pain and hopelessness in those who have suffered from it and their families. From its relationship with public and mental health, effective strategies must be implemented to reduce stigma and unlearn myths and wrong perceptions, support families, and improve quality of life through early care and detection. This article shows that those affected by leprosy are capable, functional people with much to contribute to society anywhere in the world.


Asunto(s)
Lepra , Calidad de Vida , Humanos , Colombia/epidemiología , Acontecimientos que Cambian la Vida , Estigma Social , Lepra/complicaciones , Lepra/psicología
6.
Trans R Soc Trop Med Hyg ; 118(6): 376-383, 2024 Jun 04.
Artículo en Inglés | MEDLINE | ID: mdl-38240067

RESUMEN

BACKGROUND: This study aimed to assess the effectiveness of nurse-led interventions in managing leprosy due to a shortage of dermatologists and other healthcare professionals. METHODS: A total of 100 leprosy patients were divided into experimental (n=50) and control groups (n=50). The intervention included face-to-face counseling by a trained nurse, motivational videos and exercise demonstrations. The control group received standard care. The primary outcome of interest was treatment adherence (Adherence to Refills and Medications Scale); other assessed outcomes included changes in perceived stigma (Stigma Assessment and Reduction of Impact scale), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder seven-item) and quality of life (WHO QOL-BREF Scale) from baseline to week 8. RESULTS: The intervention group had better treatment adherence (p<0.001). At baseline, moderately severe and severe depression prevalence was 18% and 28%, respectively, and anxiety was 25%, with no intergroup differences. Anxiety significantly decreased in the intervention group (p<0.001), but depression remained similar (p=0.291). Perceived stigma improved notably, especially in disclosure of concern (p<0.001), internal stigma (p<0.001) and anticipated stigma (p<0.001). Quality of life scores improved in the intervention group vs controls. CONCLUSION: Nurse-led interventions effectively enhanced quality of life and treatment adherence and reduced anxiety, depression and perceived stigma among leprosy patients. The study recommends strengthening the capacity of nurses for active involvement in leprosy care.


Asunto(s)
Lepra , Calidad de Vida , Estigma Social , Atención Terciaria de Salud , Humanos , Lepra/enfermería , Lepra/psicología , Masculino , Femenino , India , Adulto , Persona de Mediana Edad , Depresión , Ansiedad , Cumplimiento de la Medicación , Consejo
7.
Int Health ; 15(Supplement_3): iii7-iii9, 2023 Dec 20.
Artículo en Inglés | MEDLINE | ID: mdl-38118154

RESUMEN

Persons affected by Hansen's disease (PAHD) can develop long-term physical disabilities and psychological problems if the disease is not managed promptly and correctly. The complex and multi-faceted nature of stigma related to Hansen's Disease, and the discrimination arising from it, demands multiple parallel steps to improve the health, well-being and lived experience of People Affected by Hansen's Disease, including: 1) adoption and pursuance of a human rights based approach; 2) revocation of discriminatory laws; 3) education and training for healthcare workers; 4) new techniques and therapies to diagnose and treat HD without side-effects and to reduce risk of disabilities; 5) elimination of stigmatising terminology.


Asunto(s)
Personas con Discapacidad , Lepra , Humanos , Lepra/complicaciones , Lepra/diagnóstico , Lepra/psicología , Estigma Social , Escolaridad , Personal de Salud
8.
Int J Mycobacteriol ; 11(2): 133-138, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35775544

RESUMEN

This protocol describes a study in which we would assess the effect of using community lay counselors, self-help groups (SHGs), and trained frontline health workers to reduce mental disorders and improve quality of life (QOL) of persons affected by leprosy or Buruli ulcer (BU). A cluster randomized controlled study design will be employed. The study will involve persons affected by leprosy or BU. Ten local government areas (clusters) with the highest number of notified leprosy or BU cases between 2014 and 2018 in Southern Nigeria will be purposively selected. The clusters will be randomized into intervention and control groups using a computer-generated list of random numbers. At baseline, data were collected using the following validated questionnaires, Patient Health Questionnaire, Generalized Anxiety Disorder questionnaire, Stigma Assessment and Reduction of Impact Scale, World Health Organization QOL BREF and Warwick-Edinburgh Mental Well-being scale among persons affected by leprosy or BU. The intervention will last for 2 years and will involve use of community lay counselors, SHGs, and appropriately trained frontline health workers in reducing mental disorders and improving QOL of persons affected by leprosy or BU. This project postulates that the reduction of burden of mental health problems and improved QOL among persons affected by leprosy or BU could be achieved through a holistic approach involving SHGs, appropriately trained community opinion leaders, and general health-care workers as well as a functional referral system. If successful, the model will be integrated into the activities of the National Tuberculosis and Leprosy Control Programme and scaled up nationwide. Trial registration: ISRCTN Registry: ISRCTN 83649248. https://trialsearch. who.int/Trial2.aspx? TrialID % ISRCTN83649248 Prospectively registered.


Asunto(s)
Úlcera de Buruli , Lepra , Salud Mental , Úlcera de Buruli/psicología , Humanos , Lepra/psicología , Nigeria/epidemiología , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto
9.
PLoS Negl Trop Dis ; 16(4): e0010264, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35394998

RESUMEN

BACKGROUND: Family involvement in overcoming the severity of leprosy is very important in the life of leprosy sufferers in communities who experience the clinical and, psychological, social and behavioral consequences of the disease. However, this need, psychosocial, is felt to be not optimal. This study is to identify how the experiences of family members as caregivers provide assistance to individuals with leprosy in improving healing and maintaining patterns of interaction in the family. METHODS: The design uses qualitative research with in-depth, face-to-face interviews with family members in a semi-structured manner with the hope of obtaining complete data. Using purposive sampling with Participatory Interpretative Phenomenology analysis, there are 12 families with 15 family members consisting of 4 men and 11 women. RESULTS: This study produced a family theme that tried to follow what would happen to individuals with leprosy, with four sub-categories: 1) Using various coping alternatives to recognize the disease, 2) Family members in the shadow of leprosy, 3) Trying to empathize with other family members. sick, 4) Caring for the emotional response of the family and seeking support. CONCLUSIONS: This analysis shows that deficiency in cognitive aspects can be closed by maintaining a lifestyle in the family through efforts to understand, support, establish communication, increase maximum involvement in restoring self-confidence, especially in individuals with leprosy with psychosocial problems in the family. The results of this study can be used as psychosocial support in maintaining communication between family members to support treatment programs and accelerate the recovery of leprosy.


Asunto(s)
Lepra , Acontecimientos que Cambian la Vida , Cuidadores/psicología , Familia/psicología , Femenino , Humanos , Indonesia , Lepra/psicología , Masculino , Investigación Cualitativa
10.
Psychol Trauma ; 14(6): 940-947, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-35130019

RESUMEN

OBJECTIVES: Communities affected by leprosy encounter multiple traumas and adversities and are some of the poorest in the world. A diagnosis of leprosy can have catastrophic implications for peoples social, health, and economic circumstances. In this article, we describe a reciprocal collaboration with a nongovernmental organization (NGO) that supports people affected by leprosy, trauma, and adversity in rural Nepal. We offer a social identity-based empowerment approach for two reasons. We argue this approach is particularly suited to support those impacted by trauma and its psychological aftermath as those affected are disproportionately from disempowered and marginalized groups. Second, we know that people gain strength from others with whom they share experiences. METHOD: We offer longitudinal data (N = 71) to support this model of a mutually respectful, participatory, and collaborative approach with the Nepal Leprosy Trust (NLT), a social development NGO. RESULTS: Findings of mediation analysis highlight that where a traumatic experience is highly stigmatized and isolating there is value in a group-based, self-help approach that emphasizes empowerment. CONCLUSION: A group-based approach that focuses on increasing knowledge and collective social resources is empowering for those affected by leprosy and adversity, because these resources build resilience. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Asunto(s)
Lepra , Identificación Social , Humanos , Lepra/psicología , Lepra/terapia , Nepal , Pobreza
11.
PLoS Negl Trop Dis ; 16(1): e0010132, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-35061673

RESUMEN

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.


Asunto(s)
Prestación Integrada de Atención de Salud/métodos , Filariasis Linfática/epidemiología , Elefantiasis/epidemiología , Lepra/epidemiología , Linfedema/psicología , Adulto , Elefantiasis/psicología , Elefantiasis/terapia , Filariasis Linfática/psicología , Filariasis Linfática/terapia , Etiopía/epidemiología , Femenino , Grupos Focales , Servicios de Salud , Salud Holística , Humanos , Lepra/psicología , Lepra/terapia , Extremidad Inferior/patología , Linfedema/epidemiología , Linfedema/terapia , Masculino , Persona de Mediana Edad , Rehabilitación Psiquiátrica , Estigma Social , Adulto Joven
12.
Qual Health Res ; 32(4): 622-634, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34904455

RESUMEN

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.


Asunto(s)
Lepra , Esquizofrenia , Teoría Fundamentada , Humanos , Indonesia , Lepra/psicología , Estigma Social
13.
Int Health ; 14(5): 530-536, 2022 09 07.
Artículo en Inglés | MEDLINE | ID: mdl-34634104

RESUMEN

BACKGROUND: Podoconiosis, lymphatic filariasis and leprosy are highly stigmatised neglected tropical diseases that cause lymphoedema. Their enormous impacts on health-related quality of life, mental health and economic productivity can be significantly reduced by morbidity management and disability prevention (MMDP) services, but to deliver such services requires appropriate training of healthcare professionals. The aim of this study was to assess the knowledge, attitudes and practices (KAP) of rural Ethiopian healthcare professionals towards people with lymphoedema as a way to assess training needs. METHODS: This study used questionnaires to quantitatively assess KAP towards people with lymphoedema among rural healthcare professionals in northwest Ethiopia before and 12 months after a short training intervention. RESULTS: Questionnaires were administered to 14 health professionals at baseline and 21 at follow-up. At baseline, 71% (10/14) were found to hold at least one stigmatising attitude towards lymphoedema patients, compared with 66% (14/21) at follow-up. Large gaps in knowledge were noted, with many unable to identify ways of treating/preventing the diseases. CONCLUSIONS: This study showed high proportions of healthcare workers holding stigmatising views and lacking essential knowledge about lymphoedema. To maximise the impact of MMDP interventions, further research is urgently needed to understand how to address these issues.


Asunto(s)
Filariasis Linfática , Elefantiasis , Lepra , Linfedema , Elefantiasis/prevención & control , Filariasis Linfática/complicaciones , Etiopía , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud , Humanos , Lepra/complicaciones , Lepra/psicología , Linfedema/etiología , Linfedema/terapia , Enfermedades Desatendidas , Calidad de Vida/psicología
14.
Hansen. int ; 47: 1-17, 2022. tab
Artículo en Portugués | LILACS, SES-SP, HANSEN, HANSENIASE, SESSP-ILSLPROD, SES-SP, SESSP-ILSLACERVO, SES-SP | ID: biblio-1436164

RESUMEN

Objetivo: identificar os fatores associados ao estigma da hanseníase, manifestado na orientação quanto à separação de objetos no convívio familiar pelos agentes comunitários de saúde de Palmas, Tocantins, Brasil. Métodos: estudo transversal do tipo quantitativo realizado nas Unidades Básicas de Saúde de Palmas em uma população de 301 agentes comunitários de saúde, por meio de um questionário autoaplicável. Resultados: dos 301 agentes comunitários de saúde, 22,92% orientaram as pessoas no domicílio quanto à separação de objetos de uso pessoal, tais como talheres, copos, pratos, toalhas, roupa de cama, vestimentas e isolamento de dormitório. A orientação para separar objetos de uso pessoal foi significativamente maior para os agentes comunitários de saúde do sexo masculino (RP: 1,89; IC: 1,25-2,87), mais jovens (RP: 1,90; IC: 1,14-3,17), com menor tempo de moradia em Palmas (RP: 2,06; IC: 1,253,40), com localização da Unidade Básica de Saúde fora do plano diretor (RP: 1,75; IC: 1,11-2,76), que não fizeram curso em hanseníase (RP: 3,03; IC: 2,01-4,58), que nunca fizeram acompanhamento de casos (RP: 3,82; IC: 2,02-7,22) e que não teve um familiar acometido por hanseníase (RP: 1,96; IC: 1,10-3,47). Conclusão: a elevada prevalência de agentes comunitários de saúde que apresentam estigma da hanseníase representa uma barreira nas ações de controle da doença. Observou-se que as chances de ocorrência de estigma foram maiores nos agentes comunitários de saúde jovens, do sexo masculino, sem capacitação sobre hanseníase e com local de trabalho nas regiões periféricas do município. Fatores a serem considerados pelo programa de controle local com a adoção de Educação Permanente em Saúde. Investimentos em cursos direcionados à hanseníase podem contribuir para a redução do desconhecimento acerca da doença, pois os aspectos culturais e de crenças geracionais influenciam na manutenção de conceitos e do estigma social.


Objective: to identify the factors associated with the stigma of leprosy, manifested in guidance regarding the separation of objects in family life, by community health workers in Palmas, Tocantins, Brazil. Methods: quantitative cross-sectional study carried out in Basic Health Units in Palmas in a population of 301 community health workers, using a self-administered questionnaire. Results: of the 301 CHWs, 22.92% guided people at home regarding the separation of personal objects, such as cutlery, glasses, plates, towels, bed linen, clothing and bedroom isolation. Guidance to separate objects for personal use was significantly higher for male community health workers (PR: 1.89; CI:1.25-2.87), younger (PR:1.90; CI:1.14- 3.17), with less time living in Palmas (RP: 2.06; CI: 1.253.40), with the location of the Basic Health Units outside the master plan (PR: 1.75; CI: 1.11-2.76 ), who had not taken a leprosy course (PR:3.03; CI: 2.01-4.58), who had never followed up cases (PR:3.82; CI: 2.02-7.22) and who did not have a family member affected by leprosy (PR:1.96; CI: 1.10-3.47). Conclusion: the high prevalence of community health workers who have leprosy stigma represents a barrier in disease control actions. It was observed that the chances of stigma occurrence were higher in young, male community health agents, without training on leprosy and with a workplace in the peripheral regions of the city. Factors to be considered by the local control program with the adoption of Permanent Health Education. Investments in courses aimed at leprosy can contribute to reducing ignorance about the disease, as cultural aspects and generational beliefs influence the maintenance of concepts and social stigma.


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Anciano , Agentes Comunitarios de Salud , Estigma Social , Lepra/prevención & control , Brasil/epidemiología , Educación del Paciente como Asunto , Educación Continua , Enfermedades Desatendidas , Lepra/psicología , Lepra/epidemiología
15.
Enferm. foco (Brasília) ; 12(6): 1178-1183, dez. 2021.
Artículo en Portugués | LILACS, BDENF | ID: biblio-1369154

RESUMEN

Objetivo: compreender o sentido de ser-com reações hansênicas. Método: Estudo alicerçado no método fenomenológico hermenêutico de Martin Heidegger, realizado a partir de 25 entrevistas individuais com pacientes em tratamento ambulatorial para reações hansênicas, em uma unidade de saúde especializada localizada no estado do Pará, Brasil. Resultados: Duas unidades temáticas foram organizadas: "Significando as reações hansênicas" e "Convivendo com as reações hansênicas". Para os participantes, viver com reações hansênicas significa dor, vergonha, desesperança, medo, incerteza e preocupações que transformam profundamente o cotidiano. O sentido de ser-com reações hansênicas se desvela quase sempre na impessoalidade, ambiguidade, curiosidade e na publicidade da vida, em que o ser-aí se vê a partir dos outros e não de si mesmo. Considerações finais: Este estudo proporciona conhecimentos importantes para o cuidado de enfermagem às pessoas que vivem com reações hansênicas, na medida em que compreender significados e sentidos é importante para impulsionar a prática de um cuidado de enfermagem sensível, empático e preocupado com o diálogo e com as necessidades do ser-aí no mundo, onde a cura se desvela nas práticas de cuidado com-o-outro e não para-o-outro. (AU)


Objective: To understand the meaning of being-with leprosy reactions. Methods: Study based on Martin Heidegger's hermeneutical phenomenological method, conducted from 25 individual interviews with patients undergoing treatment for leprosy reactions, in a specialized health unit located in the state of Pará, Brazil. Results: Two thematic units were organized: "Signifying leprosy reactions" and "Living with leprosy reactions". For the participants, living with leprosy reactions means pain, shame, hopelessness, fear, uncertainty and concerns that profoundly transform daily life. The sense of being-with leprosy reactions is almost always revealed in the impersonality, ambiguity, curiosity and publicity of life, in which the being-there is seen from other beings and not from oneself. Conclusion: This study provides important knowledge for nursing care to people living with leprosy reactions, as understanding meanings and senses is important to boost the practice of sensitive, empathic and concerned with dialogue and with nursing care. the needs of the being-there in the world, where the cure is revealed in the care practices with-the-other and not for the-other. (AU)


Objetivo: Comprender el significado de las reacciones de estar-con lepra. Métodos: Estudio basado en el método fenomenológico hermenéutico de Martin Heidegger, realizado a partir de 25 entrevistas individuales a pacientes en tratamiento ambulatorio por reacciones leprosas, en una unidad de salud especializada ubicada en el estado de Pará, Brasil. Resultados: Se organizaron dos unidades temáticas: "Significando reacciones leprosas" y "Viviendo con reacciones leprosas". Para los participantes, vivir con reacciones leprosas significa dolor, vergüenza, desesperanza, miedo, incertidumbre y preocupaciones que transforman profundamente la vida diaria. La sensación de ser-con reacciones leprosas se revela casi siempre en la impersonalidad, ambigüedad, curiosidad y publicidad de la vida, en la que el ser-allí se ve desde los demás y no desde uno mismo. Conclusion: Este estudio aporta conocimientos importantes para el cuidado de enfermería a las personas que viven con reacciones leprosas, ya que la comprensión de significados y sentidos es importante para impulsar la práctica de la sensibilidad, la empatía y la preocupación por el diálogo y el cuidado de enfermería. el mundo, donde la cura se revela en las prácticas de cuidado con el otro y no para el otro. (AU)


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Lepra/psicología , Atención de Enfermería , Ansiedad/psicología , Vergüenza , Entrevistas como Asunto , Investigación Cualitativa , Miedo/psicología , Hermenéutica , Distrés Psicológico
16.
PLoS Negl Trop Dis ; 15(11): e0009941, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34784350

RESUMEN

The present study aimed to investigate the epidemiological situation of leprosy (Hansen's Disease), in a hyperendemic metropolis in the Central-West region of Brazil. We studied trends over eleven years, both in the detection of the disease and in disabilities, analyzing disparities and/or differences regarding gender and age. This is an ecological time series study conducted in Cuiabá, capital of the state of Mato Grosso. The population consisted of patients diagnosed with leprosy between the years 2008 and 2018. The time series of leprosy cases was used, stratifying it according to gender (male and female), disability grade (G0D, G1D, G2D, and not evaluated) and age. The calendar adjustment technique was applied. For modeling the trends, the Seasonal-Trend decomposition procedure based on Loess (STL) was used. We identified 9.739 diagnosed cases, in which 58.37% were male and 87.55% aged between 15 and 59 years. Regarding detection according to gender, there was a decrease among women and an increase in men. The study shows an increasing trend in disabilities in both genders, which may be related to the delay in diagnosis. There was also an increasing number of cases that were not assessed for disability at the time of diagnosis, which denotes the quality of the services.


Asunto(s)
Lepra/epidemiología , Adolescente , Adulto , Anciano , Brasil/epidemiología , Niño , Personas con Discapacidad/estadística & datos numéricos , Enfermedades Endémicas , Femenino , Humanos , Lepra/psicología , Masculino , Persona de Mediana Edad , Factores Sexuales , Adulto Joven
17.
PLoS Negl Trop Dis ; 15(8): e0009654, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-34424909

RESUMEN

INTRODUCTION: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. CONCLUSIONS/SIGNIFICANCE: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Lepra/epidemiología , Lepra/psicología , Percepción Social , Adulto , Femenino , Grupos Focales , Humanos , India/epidemiología , Masculino , Persona de Mediana Edad , Análisis Multivariante , Análisis de Regresión , Estigma Social , Encuestas y Cuestionarios , Adulto Joven
19.
PLoS Negl Trop Dis ; 15(7): e0009492, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-34237079

RESUMEN

Leprosy, podoconiosis, and lymphatic filariasis (LF) are among the priority neglected tropical diseases (NTDs) in Ethiopia. The disability, psychosocial, and mental health status of people affected by these NTDs are still overlooked in global NTD discourse. The objective of this systematic review was to synthesize the existing evidence describing the disability, psychosocial, and mental health status of people affected by leprosy, podoconiosis, and LF prior to developing a holistic physical and psychosocial care package for these individuals. We searched papers reporting on disability, psychosocial, and mental health status linked to these 3 NTDs. The protocol was registered in PROSPERO with registration number CRD42019128400. Peer-reviewed articles were searched and extracted from Medline, PsycINFO, Global Health, and Embase. Articles published in English, irrespective of the year of publication, using a quantitative study methodology, were included. Abstracts and full texts were reviewed by 2 reviewers. Data were extracted and narratively summarized, as the studies were heterogeneous and used different outcome measures. Out of 1,318 titles/abstracts screened and 59 full text studies reviewed, 24 fulfilled the inclusion criteria. Fourteen studies provided evidence of the disability associated with leprosy, podoconiosis, or LF. Ten studies provided evidence on the association between the 3 NTDs and mental health or psychosocial outcomes. The prevalence of grade 2 disability varied from 3.9% to 86%. The most commonly reported mental health impacts were depression and mental distress. A high burden of mental illness was reported, varying from 12.6% to 71.7%; the suicidal ideation was also high (18.5%). In conclusion, disability and poor psychosocial and mental health status are associated with leprosy, podoconiosis, and LF. For optimum management of these NTDs, holistic care including both physical and psychosocial interventions is vital.


Asunto(s)
Personas con Discapacidad/psicología , Filariasis Linfática/psicología , Elefantiasis/psicología , Lepra/psicología , Elefantiasis/terapia , Filariasis Linfática/terapia , Humanos , Lepra/terapia , Salud Mental , Enfermedades Desatendidas/psicología
20.
Online braz. j. nurs. (Online) ; 20: e20216448, 05 maio 2021.
Artículo en Inglés, Español, Portugués | LILACS, BDENF | ID: biblio-1223157

RESUMEN

OBJETIVOS: Analisar um grupo de apoio ao autocuidado para pessoas acometidas pela hanseníase sob a ótica de grupos operativos. MÉTODO: Estudo qualitativo do tipo explicativo, realizado em uma unidade de saúde em um município de Pernambuco. Foi realizada a análise de conteúdo, na modalidade análise temática proposta por Bardin. RESULTADOS: Os resultados apontaram características do grupo relacionadas aos seis vetores da teoria de Pichon-Rivière: afiliação e pertença, cooperação, pertinência, comunicação, aprendizagem e tele. DISCUSSÃO: O acompanhamento de um grupo de autocuidado em hanseníase proporciona uma abrangência de significados e reflexões. Estar inserido em um grupo aumenta as oportunidades de reconstrução da autoconfiança, autoestima e inserção na comunidade. CONCLUSÃO: O grupo de apoio ao autocuidado em hanseníase em foco se caracteriza como um grupo operativo. Estudos que investiguem os fatores implícitos dos GACs ainda são necessários, sobretudo no que diz respeito às características dos grupos nas diferentes unidades de saúde.


OBJECTIVES: To analyze a self-care support group for people affected by leprosy from the perspective of operative groups. METHOD: A qualitative study of the explanatory type, carried out in a health unit in a municipality of Pernambuco. Content analysis was carried out, in the thematic analysis proposed by Bardin. RESULTS: The results indicated characteristics of the group related to the six vectors of the Pichon-Rivière theory: affiliation and belonging, cooperation, pertinence, communication, learning and tele. DISCUSSION: The monitoring of a self-care group in leprosy provides a range of meanings and reflections. Being part of a group increases the opportunities for rebuilding self-confidence, self-esteem and insertion in the community. CONCLUSION: The leprosy self-care support group in focus is characterized as an operative group. Studies that investigate the implicit factors of the SCGs are still needed, especially with regard to the characteristics of the groups in the different health units.


OBJETIVO: Analizar un grupo de apoyo para el autocuidado de personas afectadas por la enfermedad de Hansen (lepra) desde la perspectiva de los grupos operativos. MÉTODO: Estudio cualitativo de tipo explicativo, realizado en una unidad de salud de un municipio de Pernambuco. El análisis de contenido se realizó según la modalidad de análisis temático propuesto por Bardin. RESULTADOS: Los resultados indicaron que el grupo tenía características relacionadas con los seis vectores de la teoría de Pichon-Rivière: afiliación y pertenencia, cooperación, pertinencia, comunicación, aprendizaje y telé. DISCUSIÓN: El seguimiento de un grupo para el autocuidado de la enfermedad de Hansen ofrece una cobertura de significados y reflexiones. Formar parte de un grupo aumenta las oportunidades de reconstruir la confianza en uno mismo, la autoestima y la inserción en la comunidad. CONCLUSIÓN: El grupo de apoyo para el autocuidado de la enfermedad de Hansen se caracteriza, principalmente, por ser un grupo operatorio. Aún se necesitan estudios que investiguen los factores implícitos de los GAC, especialmente en lo que respecta a las características de los grupos en las diferentes unidades de salud.


Asunto(s)
Humanos , Autocuidado , Estructura de Grupo , Lepra/psicología , Comunicación , Investigación Cualitativa , Aprendizaje
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