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PLoS Negl Trop Dis ; 16(4): e0010264, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35394998


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 lepers 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 lepers, 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 lepers 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.

Hanseníase , Acontecimentos que Mudam a Vida , Cuidadores/psicologia , Família/psicologia , Feminino , Humanos , Indonésia , Hanseníase/psicologia , Masculino , Pesquisa Qualitativa
PLoS Negl Trop Dis ; 16(3): e0010335, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35344566


BACKGROUND: Community participation and implementing interventions based on the community are key strategies to eliminate leprosy. Health professionals have an essential role as they are a necessary source of information because of their knowledge and experience, as well as their comprehensive perspective of contexts included in the programmes. This study has the aim of analysing the perceptions on the development of programmes with people affected by leprosy from the perspective of professionals that work at different organisations in endemic contexts. METHODOLOGY: A qualitative study was carried out with the written response to an open question questionnaire which was sent by email. The script content was related to positive aspects and difficulties in daily work, participation from the community in activities, contribution to gender equality and programme sustainability. 27 health professionals were interviewed, 14 women and 13 men, all of which belonged to 16 organisations in India and Brazil. Once the content of the interviews was analysed, two main topics emerged: barriers perceived by professionals and proposals to improve the sustainability of the programmes. PRINCIPAL FINDING: Professionals identify barriers related to social stigma, inequalities, gender inequalities, difficulty managing the disease, limited services, lack of resources and lack of community participation. Furthermore, some necessary recommendations were taken into account to improve programme development related to: Eliminating stigma, reaching gender equality, developing adequate and effective services, guaranteeing adequate and quality resources and achieving compassion among professionals. CONCLUSIONS: Although introducing community programmes with people affected by leprosy has a long history in countries such as India and Brazil, there are still several barriers that can hinder their development. Based on the specific needs of the contexts, recommendations are suggested that, with the involvement of all parties and with sensitive approaches towards human rights and gender, they could help to guarantee universal health coverage and the sustainability of said programmes.

Hanseníase , Feminino , Humanos , Hanseníase/epidemiologia , Hanseníase/terapia , Masculino , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários
Esc. Anna Nery Rev. Enferm ; 26: e20210114, 2022. graf
Artigo em Português | LILACS, BDENF | ID: biblio-1350749


Resumo Objetivo avaliar a descentralização do Programa de Controle da Hanseníase (PCH) em Governador Valadares. Método o referencial teórico-metodológico foi a Avaliação de Quarta Geração, de abordagem qualitativo-participativa. O estudo envolveu 30 sujeitos divididos em quatro grupos: gestores do PCH; profissionais do Centro de Referência (CR); profissionais da atenção básica e usuários. Os dados foram coletados por entrevistas, utilizando-se a técnica do Círculo Hermenêutico-Dialético. Posteriormente, realizaram-se três oficinas de validação e negociação dos dados. Utilizou-se o Método Comparativo Constante para a análise. Resultados evidenciou-se a manutenção do modelo vertical de atenção à hanseníase, sustentado por determinantes sócio-histórico-culturais que se expressam: na permanência da porta de entrada à demanda espontânea no CR; no encaminhamento rotineiro do usuário para a atenção secundária; na ineficiência da contrarreferência; na centralização da poliquimioterapia; na crença na necessidade do atendimento especializado e no estigma. Evidenciaram-se fragilidades no vínculo com a atenção primária. Conclusão a descentralização do PCH envolve a tensão entre os atores de cada ponto de atenção à saúde, gerando disputas de saberes e práticas de saúde. Implicações para a prática a sustentabilidade da descentralização requer envolvimento político e institucional focado no fortalecimento da atenção primária, na reorientação do papel dos serviços na rede de atenção à hanseníase e na educação em saúde.

Resumen Objetivo evaluar la descentralización del Programa de Control de la Lepra (PCL) en Governador Valadares. Método el marco teórico-metodológico fue la Evaluación de Cuarta Generación, con un enfoque cualitativo-participativo. El estudio involucró a 30 sujetos, divididos en cuatro grupos: gerentes del PCL; profesionales del Centro de Referencia (CR); profesionales de atención primaria y usuarios. Los datos fueron recolectados a través de entrevistas, utilizando la técnica del Círculo Hermenéutico-Dialéctico. Posteriormente se realizaron tres talleres de validación y negociación de los datos. Para el análisis se utilizó el Método Comparativo Constante. Resultados se evidenció el mantenimiento del modelo vertical de atención a la lepra, sustentado en determinantes socio-histórico-culturales que se expresan en la permanencia del ingreso a la demanda espontánea en el CR; en la derivación rutinaria del usuario a atención secundaria; en la ineficiencia de la contrarreferencia; en la centralización de la poliquimioterapia; en la creencia en la necesidad de atención especializada y en el estigma. Se evidenciaron debilidades en el vínculo con la atención primaria. Conclusión la descentralización del PCH involucra la tensión entre los actores en cada punto de la atención en salud, generando disputas sobre conocimientos y prácticas de salud. Implicaciones para la práctica la sostenibilidad de la descentralización requiere de una participación política e institucional, enfocada en el fortalecimiento de la atención primaria, reorientando el rol de los servicios en la red de atención a la lepra y en la educación para la salud.

Abstract Objective to evaluate the decentralization of the Leprosy Control Program (LCP) in Governador Valadares. Method the theoretical and methodological framework was the Fourth Generation Evaluation, with a qualitative-participatory approach. The study involved 30 subjects divided into four groups: managers of the LCP; professionals of the Reference Center (RC); primary care professionals and users. Data were collected through interviews, using the Hermeneutic-Dialectic Circle technique. Subsequently, three workshops were held for data validation and negotiation. The Constant Comparative Method was used for the analysis. Results the maintenance of the vertical model of leprosy care was evidenced, sustained by social-historical-cultural determinants that are expressed in: the permanence of the gateway to spontaneous demand in the RC; the routine referral of the user to secondary care; the inefficiency of counter-reference; the centralization of multidrug therapy; the belief in the need for specialized care, and stigma. Weaknesses in the link with primary care were evidenced. Conclusion and implications for practice The sustainability of decentralization requires political and institutional involvement focused on strengthening primary care, reorienting the role of the services in the leprosy care network, and health education. The decentralization of the LCP involves tension between the actors of each health care point, generating disputes of knowledge and health practices.

Humanos , Atenção Primária à Saúde , Avaliação em Saúde , Hanseníase/prevenção & controle , Programas Nacionais de Saúde , Encaminhamento e Consulta , Atenção Secundária à Saúde , Brasil , Pessoal de Saúde , Pesquisa Qualitativa , Estigma Social
Rev Lat Am Enfermagem ; 29: e3419, 2021.
Artigo em Inglês, Espanhol, Português | MEDLINE | ID: mdl-34231786


OBJECTIVE: to know the interferences of leprosy in women's lives and how they reinvent themselves in coping with the disease. METHOD: a descriptive study with a qualitative approach. The theoretical-methodological framework adopts an approximation to the cartographic method and some concepts of schizoanalysis, which were used to analyze the data. The tools used to produce the data were the interview and the logbook. The interviews were conducted from July to November 2019, at the participants' homes. RESULTS: the group consisted of nine women. To display the data, we were inspired by Deleuze's ideas about difference and repetition. The results were organized in three thematic axes that address the lives of these women affected by leprosy, which accompany concerns, anxieties and worries about the effects of the disease. The transformations in the female body, the financial maintenance itself due to the comorbidities caused by leprosy and its difficulties in guaranteeing rights are elements strongly pointed out by women. CONCLUSION: there is overlap and interference of the female condition in a patriarchal society that still accompanies it. We bet on the strength of becoming-a-woman and the need to consider them in their singularities and in their context for producing care permeated by meetings of the affirmation of the power of life.

Adaptação Psicológica , Hanseníase , Ansiedade , Feminino , Humanos , Pesquisa Qualitativa
Online braz. j. nurs. (Online) ; 20: e20216448, 05 maio 2021.
Artigo em Inglês, Espanhol, Português | LILACS, BDENF | ID: biblio-1223157


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.

Humanos , Autocuidado , Estrutura de Grupo , Hanseníase/psicologia , Comunicação , Pesquisa Qualitativa , Aprendizagem
Front Public Health ; 9: 621433, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33869126


Background: The emergence and resurgence of zoonotic diseases have continued to be a major threat to global health and the economy. Developing countries are particularly vulnerable due to agricultural expansions and domestication of animals with humans. Scientifically sound clinical trials are important to find better ways to prevent, diagnose, and treat zoonotic diseases, while there is a lack of evidence to inform the clinical trials' capacity and practice in countries highly affected with the diseases. This study aimed to investigate expert scientists' perceptions and experiences in conducting clinical trials toward zoonotic diseases in Ethiopia. Methods: This study employed a descriptive, qualitative study design. It included major academic and research institutions in Ethiopia that had active engagements in veterinary and public health researches. It included the National Veterinary Institute, the National Animal Health Diagnostic and Investigation Center, the College of Veterinary Medicine at Addis Ababa University, the Ethiopian Public Health Institute, the Armauer Hansen Research Institute, and the College of Health Sciences at Addis Ababa University. In-depth interviews were conducted with expert scientists. Data were collected from October 2019 to April 2020. Data analysis was undertaken using open code 4.03 for qualitative data analysis. Results: Five major themes, with 18 sub-themes, emerged from the in-depth interviews. These were: challenges in the prevention, control, and treatment of zoonotic diseases; One Health approach to mitigate zoonotic diseases; personal and institutional experiences in conducting clinical trials on zoonotic diseases; barriers in conducting clinical trials toward zoonotic diseases; and strategies that promote conducting clinical trials on zoonotic diseases. Conducting clinical trials on zoonotic diseases in Ethiopia is hampered by a lack of clearly articulated ethics and regulatory frameworks, trial experts, financial resources, and good governance. Conclusion: In Ethiopia, conducting clinical trials on zoonotic diseases deserves due attention. Strengthening institutional and human resources capacity is a pre-condition to harness effective implementation of clinical trials on zoonotic diseases in the country. In Ethiopia where skilled human resource is scarce, One Health approach has the potential to form multidisciplinary teams to systematically improve clinical trials capacity and outcomes in the country.

Médicos , Animais , Etiópia/epidemiologia , Saúde Global , Humanos , Pesquisa Qualitativa , Zoonoses/epidemiologia
PLoS Negl Trop Dis ; 15(4): e0009332, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33878110


BACKGROUND: Neglected Tropical Diseases (NTDs) are a group of several communicable and non-communicable diseases prevalent in tropical and subtropical areas. The co-endemicity of these diseases, the similarity of their clinical signs, and the need to maximize limited financial and human resources suggest the importance of adoptingan integratedapproach to their prevention and treatment. AIMS: This study describes the development of a comprehensive package of physical, mental health and psychosocial care for people with lower-limb lymphoedema caused bypodoconiosis, lymphatic filariasis (LF)or leprosy as part of the EnDPoINT program in Ethiopia. METHOD: The care package was developed using a mixed-methods approach, consisting of a literature review, situational analysis, Theory of Change (ToC) workshops, qualitative research, and additional workshops to fine-tune the draft care package. The care package was developed between March 2018 and January 2020 in Addis Ababa and the implementation research site, Awi zone in the North-West of Ethiopia. RESULTS: The holistic care package includes components implemented at three levels of the health care system:health organization, facility, and community. Sections of the care package are directed at strengthening capacity building, program management, community engagement, awareness-raising, stigma-reduction, morbidity management, disability prevention, follow-up visits, referral linkage, community-based rehabilitation, and monitoring and evaluation. CONCLUSIONS: The study developed a holistic integrated care package for lower limb disorder and co-morbid mental health problems caused by podoconiosis, LF or leprosy. The approach has the potential to significantly reduce lower limb disorder-associated morbidity, disability, and psychosocial problems. It also standardizes a scalable approach appropriate for the Ethiopian setting and, most likely, other countries where these NTDs are present.

Prestação Integrada de Cuidados de Saúde/organização & administração , Filariose Linfática/prevenção & controle , Elefantíase/prevenção & controle , Hanseníase/prevenção & controle , Atenção Primária à Saúde , Etiópia , Feminino , Serviços de Saúde , Humanos , Extremidade Inferior , Masculino , Saúde Mental , Reabilitação Psiquiátrica , Pesquisa Qualitativa
PLoS Negl Trop Dis ; 15(4): e0009329, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33798199


BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.

Saúde da Família , Família/psicologia , Hanseníase/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Adulto , Feminino , Humanos , Índia , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários , Adulto Jovem
Rev Bras Enferm ; 74(1): e20200532, 2021.
Artigo em Inglês, Português | MEDLINE | ID: mdl-33787801


OBJECTIVES: to understand how the therapeutic itineraries of people affected by leprosy are processed. METHODS: this is a descriptive, qualitative study, conducted in April 2018 in Barão de Grajaú in Maranhão, with interviews in the form of narratives of seven patients who had a late leprosy diagnosis. RESULTS: the search for diagnosis is a major difficulty in accessing health services, resulting in a late diagnosis and, consequently, with the presence of visible deformities. It was noticed that the health units do not have a flow, nor protocols for comprehensive treatment, and these people are referred to a referral unit in another state to perform sputum smear microscopy. FINAL CONSIDERATIONS: leprosy control actions need reformulations that seek the relationship between operational activities, epidemiological indicators and risk factors, in accordance with the real needs of each region, thus highlighting the gaps evidenced in the therapeutic itineraries.

Hanseníase , Brasil , Diagnóstico Tardio , Humanos , Hanseníase/terapia , Pesquisa Qualitativa , Fatores de Risco
Malar J ; 20(1): 79, 2021 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-33557847


BACKGROUND: In parallel with the change of malaria policy from control to elimination and declines in the malaria burden in Greater Mekong Sub-region, the motivation and social role of malaria volunteers has declined. To address this public health problem, in Myanmar, the role and responsibilities of malaria volunteers have been transformed into integrated community malaria volunteers (ICMV), that includes the integration of activities for five additional diseases (dengue, lymphatic filariasis, tuberculosis, HIV/AIDS and leprosy) into their current activities. However, this transformation was not evidence-based and did not consider inputs of different stakeholders. Therefore, qualitative stakeholder consultations were performed to optimize future malaria volunteer models in Myanmar. METHODS: Semi-structured interviews were conducted with key health stakeholders from the Myanmar Ministry of Health and Sports (MoHS) and malaria implementing partners to obtain their perspectives on community-delivered malaria models. A qualitative descriptive approach was used to explore the experiences of the stakeholders in policymaking and programme implementation. Interview topic guides were used during the interviews and inductive thematic data analysis was performed. RESULTS: While ICMVs successfully provided malaria services in the community, the stakeholders considered the ICMV model as not optimal and suggested that many aspects needed to be improved including better training, supervision, support, and basic health staff's recognition for ICMVs. Stakeholders believe that the upgraded ICMV model could contribute significantly to achieving malaria elimination and universal health care in Myanmar. DISCUSSION AND CONCLUSION: In the context of high community demand for non-malaria treatment services from volunteers, the integrated volunteer service package must be developed carefully in order to make it effective in malaria elimination programme and to contribute in Myanmar's pathway to universal health coverage (UHC), but without harming the community. An evidenced-based, community-delivered and preferred model, that is also accepted by the MoHS, is yet to be developed to effectively contribute to achieving malaria elimination and UHC goals in Myanmar by 2030.

Agentes Comunitários de Saúde/psicologia , Malária Falciparum/prevenção & controle , Malária Vivax/prevenção & controle , Participação dos Interessados/psicologia , Voluntários/psicologia , Agentes Comunitários de Saúde/estatística & dados numéricos , Malária , Malária Falciparum/psicologia , Malária Vivax/psicologia , Mianmar , Pesquisa Qualitativa , Voluntários/estatística & dados numéricos
Rev. enferm. UFPE on line ; 15(1): [1-15], jan. 2021. ilus, tab, graf
Artigo em Português | BDENF, BDENF | ID: biblio-1151692


Objetivos: relatar a estratégia de contribuição para a educação dos profissionais em hanseníase. Método: trata-se de um estudo qualitativo, descritivo, tipo pesquisa-ação, que é uma apropriação coletiva do conhecimento, com a participação de uma enfermeira/pesquisadora e animadora dos Círculos de Cultura, onde se estabelece uma interação com os profissionais de saúde que atuam nos três municípios estudados, sujeitos do estudo, determinando-se a conjugação da investigação com os processos mais amplos da ação educativa. Resultados: percebe-se que capacitar é uma forma de se orientar o caminho a ser seguido. Mostrou-se que o aprender e o ensinar, com o uso da metodologia problematizadora, levam o indivíduo à transformação. Conclusão: observa-se que o círculo de discussão baseado na gestão participativa promove profissionais inovadores e transformadores no cotidiano do trabalho e fornece subsídios para a educação em saúde relacionada à hanseníase.(AU)

Objectives: to report on the strategy for contributing to the education of professionals regarding leprosy. Method: it is a qualitative, descriptive, research-action type study, which is a collective appropriation of knowledge, with the participation of a nurse/researcher and animator of the Circles of Culture, where an interaction is established with the health professionals who work in the three studied municipalities, subjects of the study, determining the conjugation of the investigation with the broader processes of the educational action. Results: it is realized that training is a way to guide the path that must be followed. It has been shown that learning and teaching, with the use of the problematizing methodology, leads the individual to transformation. Conclusion: it is noted that the discussion circle based on participatory management promotes innovative and transformative professionals in everyday work and provides subsidies for leprosyrelated health education.(AU)

Objetivo: informar la estrategia de contribución para la educación de los profesionales de la lepra. Método: es un estudio cualitativo, descriptivo, tipo investigación-acción, que es una apropiación colectiva del conocimiento, con la participación de una enfermera / investigadora y animadora de los Círculos de Cultura, donde se establece una interacción con los profesionales de la salud quienes laboran en los tres municipios estudiados, sujetos del estudio, determinando la combinación de la investigación con los procesos más amplios de acción educativa. Resultados: es evidente que la formación es una forma de orientar el camino a seguir. Se ha demostrado que el aprendizaje y la enseñanza, utilizando una metodología problematizadora, llevan al individuo a la transformación. Conclusión: se observa que el círculo de discusión basado en la gestión participativa promueve profesionales innovadores y transformadores en el trabajo diario y otorga subsidios para la educación en salud relacionada con la lepra.(AU)

Humanos , Masculino , Feminino , Centros de Saúde , Saúde Pública , Pessoal de Saúde , Educação Continuada , Hanseníase , Epidemiologia Descritiva , Pesquisa Qualitativa
Artigo em Inglês | LILACS, BDENF | ID: biblio-1280458


Objective: to know the interferences of leprosy in women's lives and how they reinvent themselves in coping with the disease. Method: a descriptive study with a qualitative approach. The theoretical-methodological framework adopts an approximation to the cartographic method and some concepts of schizoanalysis, which were used to analyze the data. The tools used to produce the data were the interview and the logbook. The interviews were conducted from July to November 2019, at the participants' homes. Results: the group consisted of nine women. To display the data, we were inspired by Deleuze's ideas about difference and repetition. The results were organized in three thematic axes that address the lives of these women affected by leprosy, which accompany concerns, anxieties and worries about the effects of the disease. The transformations in the female body, the financial maintenance itself due to the comorbidities caused by leprosy and its difficulties in guaranteeing rights are elements strongly pointed out by women. Conclusion: there is overlap and interference of the female condition in a patriarchal society that still accompanies it. We bet on the strength of becoming-a-woman and the need to consider them in their singularities and in their context for producing care permeated by meetings of the affirmation of the power of life.

Resumo Objetivo: conocer las interferencias de la enfermedad de Hansen en la vida de las mujeres y cómo se reinventan en el afrontamiento de la enfermedad. Método: estudio de abordaje cualitativo. El marco teórico-metodológico adopta un acercamiento al método cartográfico y algunos conceptos de esquizoanálisis, que fueron utilizados para analizar los datos. Las herramientas utilizadas para producir los datos fueron la entrevista y el libro de registro. Las entrevistas se realizaron de julio a noviembre de 2019, en los domicilios de las participantes. Resultados: el grupo estuvo compuesto por nueve mujeres. Para presentar los datos, nos inspiramos en las ideas de Deleuze sobre la diferencia y la repetición. Los resultados se organizaron en tres ejes temáticos que abordan la vida de estas mujeres afectadas por la enfermedad de Hansen, que acompañan inquietudes, angustias y preocupaciones sobre los efectos de la enfermedad. Los cambios en el cuerpo femenino, la manutención económica propiamente dicha debido a las comorbilidades provocadas por la enfermedad de Hansen y sus dificultades para garantizar los derechos son elementos fuertemente señalados por las mujeres. Conclusión: hay una superposición e interferencia de la condición femenina en una sociedad patriarcal que aún la acompaña. Apostamos por la fuerza del devenir-mujer y la necesidad de considerarla en sus singularidades y en su contexto para la producción de cuidados forjados por encuentros para afirmar el poder de la vida.

Objetivo: conhecer as interferências da hanseníase na vida das mulheres e como elas se reinventam no enfrentamento da doença. Método: estudo de abordagem qualitativa. O referencial teórico-metodológico adota uma aproximação ao método cartográfico e alguns conceitos da esquizoanálise, que foram utilizados para analisar os dados. As ferramentas utilizadas para produção dos dados foram a entrevista e o diário de bordo. As entrevistas foram realizadas no período de julho a novembro de 2019, no domicílio das participantes. Resultados: o grupo foi composto por nove mulheres. Para apresentar os dados, nos inspiramos nas ideias de Deleuze relativas à diferença e repetição. Os resultados foram organizados em três eixos temáticos que abordam a vida dessas mulheres afetadas pela hanseníase, os quais acompanham inquietações, angústias e preocupações frente aos efeitos da doença. As alterações no corpo feminino, a própria manutenção financeira devido às comorbidades causadas pela hanseníase e as suas dificuldades nas garantias de direitos são elementos fortemente apontados pelas mulheres. Conclusão: há sobreposição e interferência da condição feminina em uma sociedade patriarcal que ainda a acompanha. Apostamos na força do devir-mulher e na necessidade de considerá-la em suas singularidades e em seu contexto para a produção do cuidado permeado por encontros de afirmação da potência da vida.

Humanos , Feminino , Ansiedade , Adaptação Psicológica , Vulnerabilidade Social , Pesquisa Qualitativa , Hanseníase
Int J Equity Health ; 19(1): 206, 2020 11 11.
Artigo em Inglês | MEDLINE | ID: mdl-33176809


BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.

Diabetes Mellitus/psicologia , Infecções por HIV/psicologia , Hanseníase/psicologia , Psicologia do Esquizofrênico , Estigma Social , Adulto , Feminino , Humanos , Indonésia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores Socioeconômicos
Rev Gaucha Enferm ; 41: e20190412, 2020.
Artigo em Português, Inglês | MEDLINE | ID: mdl-32667423


OBJECTIVE: To analyze the health care practices of children and adolescents with leprosy from the speeches of health professionals. METHOD: Qualitative research conducted with 23 health professionals who attended children and adolescents with leprosy in primary and secondary care in a municipality in the state of Pernambuco, from April to July 2018, through semi-structured interviews. Data were subjected to content analysis. RESULTS: The practice of health care was apprehended from the following categories of analysis: "Embracement in leprosy", "Clinical practice" and "Education in Health", with limitations in meeting the particularities of the studied population. CONCLUSIONS: Limiting aspects in health care practice contribute to the difficulties in controlling the disease, requiring the development of best practice recommendations that address the needs of children and adolescents.

Atenção à Saúde/normas , Pessoal de Saúde , Hanseníase/terapia , Prática Profissional , Adolescente , Criança , Humanos , Pesquisa Qualitativa
Rev Peru Med Exp Salud Publica ; 37(1): 25-31, 2020.
Artigo em Espanhol, Inglês | MEDLINE | ID: mdl-32520188


OBJECTIVES: In Peru, despite the small number of cases, there is evidence of late diagnosis and hidden prevalence of leprosy. In this context the objective of the study was to know the interpretation systems on leprosy, itineraries and therapeutic repertoires of patients diagnosed with leprosy who are in treatment or who have finished treatment. MATERIALS AND METHODS: A qualitative study was carried out, applying se mi-structured interviews to patients diagnosed with leprosy from the Loreto and Ucayali regions. RESULTS: 30 patients were interviewed. Most did not know the mechanism of leprosy transmission. In relation to therapeutic itineraries, patients generally went to health facilities on the recommendation of third parties who knew the disease. In some cases, health personnel made a bad diagnosis. The importance of the treatment indicated by the "Ministerio de Salud" (Ministry of Health) is recognized; however, economic factors and the distance to health facilities negatively affect adherence to treatment. In addition, it was evidenced that stigma persists towards the disease. CONCLUSIONS: Patients recognize the importance of treatment; however, they express misconceptions about the pathogenesis of leprosy, and weaknesses in the health system are also identified. These problems would lead to delay in diagnosis and treatment. It is recommended to strengthen control strategies and decentralize the care of leprosy with the participa tion of the community, patients, health personnel and healers, considering the identified barriers and a probable underdiagnosis in women.

OBJETIVOS: En Perú, a pesar del escaso número de casos, existe evidencia de un diagnóstico tardío y prevalencia oculta de la lepra. En este contexto el objetivo del estudio fue conocer los sistemas de inter pretación sobre la lepra, itinerarios y repertorios terapéuticos de pacientes con diagnóstico de lepra que se encuentren en tratamiento o con tratamiento culminado. MATERIALES Y MÉTODOS: Se realizó un estudio cualitativo, aplicando entrevistas semiestructuradas a pacientes con diagnóstico de lepra de las regiones de Loreto y Ucayali. RESULTADOS: Se entrevistaron a 30 pacientes. La mayoría no conocía el mecanismo de transmisión de la lepra. En relación con los itinerarios terapéuticos, los pacientes generalmente acudie ron a los establecimientos de salud por recomendación de terceros que conocían la enfermedad. En al gunos casos, el personal de salud realizó un mal diagnóstico. Se reconoce la importancia del tratamiento indicado por el Ministerio de Salud; sin embargo, factores económicos y la distancia a los establecimien tos de salud afectan de forma negativa la adherencia al tratamiento. Además, se evidenció que persiste el estigma de la enfermedad. CONCLUSIONES: Los pacientes reconocen la importancia del tratamiento, sin embargo, manifiestan ideas equivocadas sobre la patogenia de la lepra, además se identifican debilidades en el sistema de salud. Estos problemas conllevarían al retraso en el diagnóstico y tratamiento. Se reco mienda fortalecer las estrategias de control y descentralizar la atención de la lepra con la participación de la comunidad, pacientes, personal de salud y curanderos, considerando las barreras identificadas y un probable infradiagnóstico en la mujer.

Hanseníase , Diagnóstico Tardio , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Acesso aos Serviços de Saúde , Humanos , Hanseníase/diagnóstico , Hanseníase/epidemiologia , Hanseníase/terapia , Peru/epidemiologia , Prevalência , Pesquisa Qualitativa
PLoS Negl Trop Dis ; 14(1): e0008016, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31929530


BACKGROUND: Although leprosy is portrayed as a disappearing disease, leprosy affected persons in India are still suffering massively. Even further, nearly 60% of the world's newly detected cases are appearing from India alone. The problem has exacerbated due to the drastic decrease of global funding after India's official declaration of 'elimination', which did not foster the actual pain of patients beyond prevalence. Leprosy patients have hardships in their lives due to disabilities, stigma and poverty; thus, they require sustained, continuous care even after release from treatment. Yet, current interventions mostly have a vertical, short-term approach, not showing much progress in lightening the burden of leprosy. In contrast, Little Flower Hospital Community (LFHC) in India has been remarkably providing holistic care for thousands of leprosy patients for 35 years. However, there has not been any research conducted to uncover the underlying factors of this longstanding leprosy control model. Therefore, this research explores the in-depth contextual attributes of this hospital community that has been able to successfully provide sustainable care for a long time even without excessive external funds. METHODS AND FINDINGS: This qualitative research used a grounded theory approach, involving 28 in-depth interviews of 11 patients, 13 workers, and 4 board members from the hospital. The interview data were inductively analyzed to examine the contextual factors of the hospital's sustainability. Open coding, axial coding and selective coding were conducted, and Glaser's Six C's model was used to create a theoretical model of the sustainability of LFHC. The fundamental cause of the sustainability was the leprosy patients' strong craving for life with dignity, despite the isolation from the society. The desire resulted in a bottom-up formation of a 'consumer-provider cooperative', where patients mutually support each other with basic treatment learned from experience. The profits earned from the patients' occupational efforts such as dairy farming, cover the costs needed to manage the hospital community, which contributes to economical sustainability. Social sustainability was established through the holistic care including psychosocial, educational, medical, and residential support. The wholesome care socially rehabilitated the patients to be included in the society with satisfaction, social justice and social cohesion. The main limitation of this study is that this study cannot be generalized due to the nature of Grounded Theory based study. CONCLUSIONS: This study investigated the determinants that made LFHC sustainable, and the findings suggested the importance of forming a cooperative community and implementing social rehabilitation for sustainable leprosy control. More exploration on transferring this model to other leprosy colonies will have great impact in maintaining sustainable care for leprosy patients. Furthermore, this research may highlight the importance of sustainable development in policies targeting neglected tropical diseases beyond leprosy as well.

Hanseníase/tratamento farmacológico , Hanseníase/epidemiologia , Pessoas com Deficiência , Saúde Holística , Hospitais , Humanos , Índia/epidemiologia , Pobreza , Pesquisa Qualitativa , Estigma Social
Artigo em Inglês, Português | LILACS, BDENF, HANSEN, HANSENIASE | ID: biblio-1051323


Objetivo: Analisar a percepção de pacientes com hanseníase sobre suas Necessidades Humanas Básicas alteradas. Método: Pesquisa qualitativa e descritiva, realizada com dez pacientes inscritos no Programa Nacional de Controle da Hanseníase em uma Unidade Básica de Saúde em Belém-PA. Dados coletados de agosto a setembro de 2017, por meio de entrevista semiestruturadas e prontuários dos participantes. Os dados foram organizados e analisados na perspectiva da análise de conteúdo. A pesquisa foi aprovada, sob o nº 2.148.415/23.06.2017, pelo Comitê de Ética da Escola de Enfermagem Magalhães Barata. Resultados: foram detectadas cinco necessidades alteradas: necessidades fisiológicas, de segurança, de amor e/ou sociais, de estima e de autorrealização. Evidenciou-se que a percepção das necessidades alteradas estimula ações de autocuidado, com vistas a sua satisfação. Conclusão: O enfermeiro deve prestar cuidados humanizados ao paciente com hanseníase, motivando-os para a autonomia e para o autocuidado, contribuindo para a melhoria da qualidade de vida

Objective: To analyze Hansen's disease patients' perception on their altered fundamental human needs. Method: Qualitative descriptive research, conducted with ten patients who were registered in the National Hansen's Disease Control Program at a Health Unit, in Belém-PA. The data was collected from August to September, 2017, through semi structured interviews and patients' medical reports. The data was organized and analyzed from the perspective of content analysis. The research was approved under the nº 2.148.415/23.06.2017 through the zip code of the Magalhães Barata Nursing School. Results: Five altered needs were identified: physiological, security, of love and/or social, esteem and self-actualizing needs. It was noticeable that the perception of the altered stimulates self-care actions, aiming its satisfaction. Conclusion: The nurse should provide humanized care to Hansen's disease patients, motivating them in order to achieve autonomy and self-care, contributing to an improvement in their quality of life

Objetivos: Analizar la percepción de los pacientes con hanseníasis sobre sus necesidades humanas fundamentales cambiadas. Método: Investigación descriptiva cualitativa, realizada con diez pacientes inscritos en el Programa Nacional de Control de la Hanseníasis en una Unidad Básica de Salud en Belém-PA. Los datos fueron recolectados desde agosto hasta septiembre de 2017, por medio de entrevistas semiestructuradas e historial clínico de los participantes. Los datos fueron organizados y analizados en la perspectiva del análisis de contenido. La investigación fue aprobada bajo el número 2.148.415/23.06.2017 a través del código postal de la Escuela de Enfermería Magalhães Barata. Resultados: Fueron detectadas cinco necesidades cambiadas: necesidades fisiológicas, de seguridad, de amor y/o sociales, de estima y de autorrealización. Fue evidenciado que la percepción de las cambiadas estimula acciones de autocuidado con el objetivo de alcanzar su satisfacción. Conclusión: El enfermero debe ofrecer cuidados humanizados a los pacientes con hanseníasis, motivándolos a todos para la autonomía y para el autocuidado, contribuyendo para la mejoría en la cualidad de vida

Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Autocuidado/psicologia , Hanseníase/prevenção & controle , Hanseníase/terapia , Qualidade de Vida , Educação em Saúde , Pesquisa Qualitativa
PLoS One ; 14(2): e0210955, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30726259


BACKGROUND: Leprosy remains a disease of concern in many countries including Nepal. To achieve the target of elimination, the WHO strategy promotes comprehensive education of patients, healthcare workers (HCWs), and the public on leprosy-related issues. However most educational programs are based on the concerns of HCWs and not on patients' needs. The objective of this paper is to explore the educational needs of leprosy affected patients in Nepal and compare them to the needs perceived by HCWs. METHODOLOGY/PRINCIPAL FINDINGS: Semi directive interviews were conducted with patients and HCWs. The data was analyzed using the basic interpretative qualitative framework. The study was conducted in two leprosy referral centers, one university hospital and one primary health care center: Lalgadh Leprosy Hospital and Services Centre, Anandaban Hospital and its satellite clinic in Patan, B. P. Koirala Institute of Health Sciences in Dharan, and the Itahari primary health care centre. The results show that there remains a lack of knowledge regarding the disease (origins, manifestations, prevention and treatment) contributing to late care seeking behavior and high levels of stigma, with an important psychological and financial stress for patients. All of the HCWs displayed a good understanding of patients' difficulties and needs and acknowledged the key role of patient education. However, they expressed several challenges in managing patients due to lack of time, human resources and training in patient education. CONCLUSIONS/SIGNIFICANCE: Further efforts need to be made to increase patients' general knowledge of the disease in order to motivate them to seek healthcare earlier and change their perception of the disease to reduce stigma. HCWs need proper training in patient education and counseling for them to acquire the necessary skills required to address the different educational needs of their patients. The use of lay and peer counselors would be an option to address the workload and lack of time expressed by HCWs.

Cuidadores/psicologia , Aconselhamento/métodos , Hanseníase/psicologia , Educação de Pacientes como Assunto , Relações Profissional-Paciente , Adolescente , Adulto , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Hanseníase/diagnóstico , Hanseníase/terapia , Amor , Masculino , Nepal , Grupo Associado , Pesquisa Qualitativa , Estigma Social , Adulto Jovem
Rev. enferm. UFPE on line ; 13(2): 292-297, fev. 2019.
Artigo em Português | BDENF, BDENF | ID: biblio-1009887


Objetivo: analisar a percepção de adolescentes sobre a hanseníase. Método: trata-se de uma pesquisa qualitativa, descritiva, constituída por 30 adolescentes de uma escola pública, realizada no período de agosto a novembro de 2016. Coletaram-se os dados a partir do jogo dinâmica da face, cujas falas foram transcritas e analisadas conforme a técnica de Análise de Conteúdo na modalidade Análise Temática. Resultados: verificase, nas falas dos adolescentes, pouco conhecimento sobre a hanseníase, sem discernimento sobre os aspectos gerais da doença, associando-a a outras enfermidades. Percebe-se que eles têm a família e a televisão como principais fontes de informação sobre a doença, e o desconhecimento sobre a hanseníase gera uma atmosfera de medo, dúvida, angústia e preocupação, principalmente, por pensarem que a doença não tem cura, causa isolamento social, e pode ser transmitida a seus familiares. Conclusão: conclui-se que os adolescentes percebem a hanseníase como uma doença grave, incurável e causadora de medo, vergonha e isolamento social.(AU)

Objective: to analyze the adolescents' perception about leprosy. Method: this is a qualitative, descriptive study of 30 adolescents from a public school, carried out from August to November 2016. Data was collected from the dynamic face game; the speeches were transcribed and analyzed according to the Content Analysis technique in the Thematic Analysis modality. Results: there is little knowledge about leprosy in adolescents, without discernment about the general aspects of the disease, associating it with other diseases. It is perceived that they have family and television as the main sources of information about the disease, and the lack of knowledge about leprosy generates an atmosphere of fear, doubt, anguish and concern, mainly because they think that the disease has no cure, causes social isolation, and can be transmitted to their family members. Conclusion: it is concluded that adolescents perceive leprosy as a serious, incurable disease that causes fear, shame and social isolation.(AU)

Objetivo: analizar la percepción de los adolescentes sobre la lepra. Método: se trata de una investigación cualitativa, descriptiva, constituida por 30 adolescentes de una escuela pública, realizada en el período de agosto a noviembre de 2016. Se recogen los datos a partir del juego dinámico de la cara, cuyas palabras fueron transcritas y analizadas de acuerdo con la técnica de Análisis de Contenido en la modalidad Análisis Temático. Resultados: se verifica, en las conversaciones de los adolescentes, poco conocimiento sobre la lepra, sin discernimiento sobre los aspectos generales de la enfermedad, asociándola a otras enfermedades. Se percibe que tienen la familia y la televisión como principales fuentes de información sobre la enfermedad, y el desconocimiento sobre la lepra genera una atmósfera de miedo, duda, angustia y preocupación, principalmente, por pensar que la enfermedad no tiene cura, causa aislamiento social, y puede ser transmitida a sus familiares. Conclusión: se concluye que los adolescentes perciben la lepra como una enfermedad grave, incurable y causante de miedo, vergüenza y aislamiento social.(AU)

Humanos , Masculino , Feminino , Criança , Adolescente , Percepção , Jogos e Brinquedos , Serviços de Saúde Escolar , Conhecimentos, Atitudes e Prática em Saúde , Educação em Saúde , Adolescente , Hanseníase , Epidemiologia Descritiva , Pesquisa Qualitativa
Soc Work Health Care ; 58(2): 151-165, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30321131


Stigmatization of persons cured of leprosy (PCLs) is a long standing social problem especially in the developing world, which often leads to their isolation from mainstream society. This study presents the voices of PCLs in the Cured Lepers' Village in Ho, a community located in Southern Ghana. The study collected data through in-depth interviews and focus group discussions with 20 participants. Findings indicate that PCLs continue to live a significant number of years in the Cured Lepers' Village after they are cured of leprosy. This situation is due to several factors such as stigma (including self-stigma), isolation, and neglect. Fear of the disease and compliance with religious and sociocultural beliefs, and regulations regarding leprosy were identified as reasons for the isolation of people affected by the disease. The study recommends a comprehensive public education program on leprosy targeting community leaders to help re-integrate PCLs into their communities and calls for social workers to be part of this process.

Hanseníase/psicologia , Estigma Social , Idoso , Idoso de 80 Anos ou mais , Características Culturais , Feminino , Gana , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa