The life experience of leprosy families in maintaining interaction patterns in the family to support healing in leprosy patients in Indonesian society. A phenomenological qualitative study.

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.

Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers.

BACKGROUND: Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management. METHODS: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. RESULTS: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. CONCLUSION: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Family dermatology life quality index in patients with pemphigus vulgaris: A cross-sectional study.

BACKGROUND AND AIMS: Pemphigus vulgaris is a rare autoimmune intraepidermal vesiculobullous disease involving the skin and mucosa. It impacts the quality of life of both patients and their families. METHODS: A total of 70 patients with pemphigus vulgaris (either outpatient or hospitalized) were enrolled using the simple sampling method between 2016 and 2017 from the dermatology clinic at Faghihi Hospital, Shiraz, Iran. A validated Persian version of the Family Dermatology Life Quality Index (FLDQI) questionnaire was filled by a family caregiver. The questionnaire contained 10 items assessing the quality of life of the family. Demographic variables were recorded in a separate form. RESULTS: The mean age of the patients was 51 ± 11.3 years and that of the family caregivers was 32 ± 8.8 years. The FLDQI score was higher (poorer quality of life) if the patient was male, older, had shorter disease duration or had fewer disease recurrences (P = 0.046, 0.01, 0.001 and >0.001, respectively). Higher scores were also obtained in the less-educated caregivers (P = 0.026) but there was no association with either gender or age (P = 0.399, 0.1). CONCLUSION: Pemphigus vulgaris significantly affects the Family Dermatology Life Quality Index. Education and counseling of family caregivers by various support groups such as Pemphigus Family Associations could be effective in improving the quality of life of the caregivers. LIMITATIONS: This study did not assess the effect of comprising domain analysis, severity of disease, patients' Dermatology Life Quality Index (DLQI), mucosal involvement, response to treatment, outpatient or admitted status, socioeconomic status, or the quality of life among the various family members.

"If you will counsel properly with love, they will listen": A qualitative analysis of leprosy affected patients' educational needs and caregiver perceptions in Nepal.

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.

Caregivers' views on stigmatization and discrimination of people affected by leprosy in Ghana.

BACKGROUND: Leprosy is a condition that has long been associated with stigma and discrimination, even when infected persons have been cured. This paper describes stigma and discrimination as viewed by caregivers who are associated with people affected by leprosy in Ghana. METHODS: A qualitative interview with semi-structured interviews were conducted for twenty caregivers. RESULTS: Findings indicated that caregivers were of the view that people affected by leprosy in Ghana are stigmatized and discriminated against by the larger society thus making their movements and interactions restricted to the Leprosarium. Besides, employments opportunities are unavailable to them thus making them exposed to financial challenges. The livelihood Empowerment Against poverty (LEAP) money given them is not sufficient for their daily upkeep. CONCLUSION: People affected by leprosy in Ghana are stigmatized and therefore find it difficult to interact freely with the public. The associated physical deformities with the disease also tend to impede their ability to relate to the general public. The LEAP cash given to people affected by leprosy is helpful however, it could be enhanced to keep pace with prevailing economic conditions in the country.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy.

Hanseníase: políticas públicas e qualidade de vida de pacientes e seus cuidadores

A hanseníase é uma doença de notificação compulsória que está inclusa no rol das doenças negligenciadas e estigmatizantes. O estigma da doença é resultante da tradução bíblica da palavra tsaraath que trouxe para a cultura ocidental uma carga de crenças sobre punição divina, castigo e pecado que influenciaram a forma cruel como a Europa Medieval lidou com a doença. A partir do Século XV, a “lepra” se torna uma doença predominantemente colonial, reduzindo-se drasticamente na Europa devido à melhoria das condições sanitárias.. Ao final do Século XIX, a descoberta do bacilo de Hansen, torna-se uma justificativa cientificamente embasada para o isolamento dos doentes, fato que influenciará toda a maneira como a saúde pública brasileira irá lidar com a doença. . O objetivo desta dissertação foi o de contextualizar as políticas públicas adotadas, e o papel. da doença hanseníase na qualidade de vida de cuidadores e pessoas vivendo com suas sequelas.. Realizou-se revisão da literatura concernente a história das políticas públicas de combate à “lepra”/ hanseníase, com consulta a fonte primária: artigos científicos e secundárias: websites e e-books. Realizou-se concomitantemente revisão da literatura buscando informação científica sobre cuidadores e sobre qualidade de vida. Foram coletadas informações de pacientes acerca de dados sociodemográficos, dados clínicos, de autonomia e cognição; dos cuidadores, foram coletados dados demográficos e dados relativos ao cuidado. Aplicou-se o Minimental, e os questionários de avaliação de atividades de vida a pacientes, e o WHOQoLbreve a pacientes e cuidadores.. As políticas públicas adotadas pelo Brasil iniciaram-se somente no século XX, pautadas pelo isolamento e segregação dos doentes, adotando, a partir do Governo Getúlio Vargas, um modelo implantado inicialmente em São Paulo, baseado no tripé do armamento antileprótico: leprosários, educandários e dispensários.

Este modelo perduraria mesmo depois da descoberta do tratamento com as sulfonas, e se mostraria ineficaz tanto para a profilaxia, quanto para a cura dos doentes, ocasionando sequelas físicas e psíquicas com graves conseqüências aos pacientes isolados. A análise estatística do binômio paciente-cuidador demonstrou os piores escores de Qualidade de Vida para pacientes nos domínios físico e mental, com melhores escores para o domínio social do WHOQoL. Cuidadores apresentaram escores inferiores aos dos pacientes no domínio social, e superiores no domínio físico, sem diferença nos domínios ambiente e psíquico. A análise de regressão linear univariada demonstrou correlações significativas: presença de companheiro, autonomia e idade do. cuidador influenciaram a QV do paciente. Para o cuidador, dados clínicos e de autonomia do paciente. influenciaram o domínio psíquico. As peculiaridades do isolamento e do estigma foram determinantes para ambos. O paciente que tem expostas suas sequelas ao meio exterior tem piores escores de qualidade de vida, e a viuvez se associa a melhores escores de QV devido ao ganho de autonomia financeira e patriarcal e devido à rede social formada. Para os cuidadores, o paciente usuário de cadeira de rodas gera menor sobrecarga devido à melhora clínica do paciente após a amputação, mas as particularidades da autonomia do paciente geram escores de QV que são influenciados diretamente pelas sequelas e evolução natural da hanseníase.

Em suma, o isolamento em hospitais Colônia foi responsável pelo surgimento de sequelas físicas e emocionais que interferem negativamente na QV do binômio pacientecuidador, mas a resiliência mediada por uma rede social, ampliada por uma entidade de apoio. social (MORHAN) tem papel importante na QV, especialmente no domínio social. A análise demonstrou ainda que as correlações entre autonomia e Qualidade de Vida não se dão de maneira linear, indicando a necessidade de ampliar estudos que apontem como se dá a transição da autonomia para a dependência, especialmente em idosos, sendo a população de hansenianos também influenciada pelas peculiaridades locais.

Hanseníase: políticas públicas e qualidade de vida de pacientes e seus cuidadores / Leprosy: public policy and quality of life of patients and their caregivers

A hanseníase é uma doença de notificação compulsória que está inclusa no rol das doenças negligenciadas e estigmatizantes. O estigma da doença é resultante da tradução bíblica da palavra tsaraath que trouxe para a cultura ocidental uma carga de crenças sobre punição divina, castigo e pecado que influenciaram a forma cruel como a Europa Medieval lidou com a doença. A partir do Século XV, a “lepra” se torna uma doença predominantemente colonial, reduzindo-se drasticamente na Europa devido à melhoria das condições sanitárias.. Ao final do Século XIX, a descoberta do bacilo de Hansen, torna-se uma justificativa cientificamente embasada para o isolamento dos doentes, fato que influenciará toda a maneira como a saúde pública brasileira irá lidar com a doença. . O objetivo desta dissertação foi o de contextualizar as políticas públicas adotadas, e o papel. da doença hanseníase na qualidade de vida de cuidadores e pessoas vivendo com suas sequelas.. Realizou-se revisão da literatura concernente a história das políticas públicas de combate à “lepra”/ hanseníase, com consulta a fonte primária: artigos científicos e secundárias: websites e e-books. Realizou-se concomitantemente revisão da literatura buscando informação científica sobre cuidadores e sobre qualidade de vida. Foram coletadas informações de pacientes acerca de dados sociodemográficos, dados clínicos, de autonomia e cognição; dos cuidadores, foram coletados dados demográficos e dados relativos ao cuidado. Aplicou-se o Minimental, e os questionários de avaliação de atividades de vida a pacientes, e o WHOQoLbreve a pacientes e cuidadores.. As políticas públicas adotadas pelo Brasil iniciaram-se somente no século XX, pautadas pelo isolamento e segregação dos doentes, adotando, a partir do Governo Getúlio Vargas, um modelo implantado inicialmente em São Paulo, baseado no tripé do armamento antileprótico: leprosários, educandários e dispensários.

Este modelo perduraria mesmo depois da descoberta do tratamento com as sulfonas, e se mostraria ineficaz tanto para a profilaxia, quanto para a cura dos doentes, ocasionando sequelas físicas e psíquicas com graves conseqüências aos pacientes isolados. A análise estatística do binômio paciente-cuidador demonstrou os piores escores de Qualidade de Vida para pacientes nos domínios físico e mental, com melhores escores para o domínio social do WHOQoL. Cuidadores apresentaram escores inferiores aos dos pacientes no domínio social, e superiores no domínio físico, sem diferença nos domínios ambiente e psíquico. A análise de regressão linear univariada demonstrou correlações significativas: presença de companheiro, autonomia e idade do. cuidador influenciaram a QV do paciente. Para o cuidador, dados clínicos e de autonomia do paciente. influenciaram o domínio psíquico. As peculiaridades do isolamento e do estigma foram determinantes para ambos. O paciente que tem expostas suas sequelas ao meio exterior tem piores escores de qualidade de vida, e a viuvez se associa a melhores escores de QV devido ao ganho de autonomia financeira e patriarcal e devido à rede social formada. Para os cuidadores, o paciente usuário de cadeira de rodas gera menor sobrecarga devido à melhora clínica do paciente após a amputação, mas as particularidades da autonomia do paciente geram escores de QV que são influenciados diretamente pelas sequelas e evolução natural da hanseníase.

Em suma, o isolamento em hospitais Colônia foi responsável pelo surgimento de sequelas físicas e emocionais que interferem negativamente na QV do binômio pacientecuidador, mas a resiliência mediada por uma rede social, ampliada por uma entidade de apoio. social (MORHAN) tem papel importante na QV, especialmente no domínio social. A análise demonstrou ainda que as correlações entre autonomia e Qualidade de Vida não se dão de maneira linear, indicando a necessidade de ampliar estudos que apontem como se dá a transição da autonomia para a dependência, especialmente em idosos, sendo a população de hansenianos também influenciada pelas peculiaridades locais.