"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

BACKGROUND: Skin neglected tropical diseases (NTDs) such as Buruli ulcer (BU) and leprosy produce significant stigma and disability. Shared clinical presentations and needs for care present opportunities for integrated case management in co-endemic areas. As global policies are translated into local integrated services, there remains a need to monitor what new configurations of care emerge and how individuals experience them. METHODS: To explore patient experiences of integrated case management for skin NTDs, in 2018, we conducted a field-based qualitative case series in a leprosy rehabilitation centre in Ganta, Liberia where BU services were recently introduced. Twenty patients with BU (n = 10) and leprosy (n = 10) participated in in-depth interviews that incorporated photography methods. We contextualised our findings with field observations and unstructured interviews with health workers. FINDINGS: The integration of care for BU and leprosy prompted new conceptualisations of these diseases and experiences of NTD stigma. Some patients felt anxiety about using services because they feared being infected with the other disease. Other patients viewed the two diseases as 'intertwined': related manifestations of the same condition. Configurations of inter-disease stigma due to fear of transmission were buffered by joint health education sessions which also appeared to facilitate social support between patients in the facility. For both diseases, medication and wound care were viewed as the cornerstones of care and appreciated as interventions that led to rehabilitation of the whole patient group through shared experiences of healing, avoidance of physical deformities and stigma reduction. Patient accounts of intense pain during wound care for BU and inability of staff to manage severe complications, however, exposed some shortcomings of medical care for the newly integrated service, as did patient fears of long-lasting disability due to lack of physiotherapy services. SIGNIFICANCE: Under integrated care policies, the possibility of new discourses about skin NTD identities emerging along with new configurations of stigma may have unanticipated consequences for patients' experiences of case management. The social experience of integrated medication and wound dressing has the potential to link patients within a single, supportive patient community. Control programmes with resource constraints should anticipate potential challenges of integrating care, including the need to ameliorate lasting disability and provide adequate clinical management of severe BU cases.

Suporte e participação social em indivíduos com hanseníase / Social Support and participation of individuals with leprosy

O contexto de isolamento social e de restrição dos relacionamentos sociais gerado pela hanseníase promove adiminuição na participação na comunidade, destacando a importância do suporte social. Desta forma, esse estudo tevecomo objetivo avaliar o grau de restrição de participação e o suporte social recebido pelos indivíduos em tratamentopara hanseníase em dois centros de referência para hanseníase no município de Juiz de Fora-MG, Brasil. Foram aplicadasas Escalas de Participação e de Avaliação do Suporte Social, no primeiro semestre de 2014, nos indivíduos inseridosnesses centros. Para análise estatística foram utilizados teste de Wilcoxon, correlação de Spearman e teste exato deFisher, com nível de significância de p<0,05. A partir dos resultados, observa-se que 60% dos sujeitos não apresentaramrestrição de participação, e altos valores de disponibilidade e de satisfação dos suportes oferecidos. Pode-se ressaltara família e os profissionais de saúde como fonte desse suporte. Destaca-se o suporte social tipo emocional, vistoque os indivíduos com hanseníase que apresentavam incapacidades e os que não tiveram restrição de participaçãoapontaram uma associação com a satisfação desse suporte. A partir deste estudo, conclui-se que o suporte social podeser apontado como um fator protetor, tornando-se essencial a escuta ao indivíduo, não perdendo de vista a noçãode que o cuidado não se remete apenas aos sinais visíveis da doença, mas antes a todo o contexto social ao qual oportador encontra-se inserido

The context of social isolation and restriction of social relationships created by leprosy promotes decreased participationin the community, highlighting the importance of social support. Thus, this study aimed to assess the degree ofparticipation restriction and social support received by individuals in treatment for leprosy in two reference centers forleprosy in the city of Juiz de Fora. The Participation and Evaluation of Social Support Scales were applied in the firsthalf of 2014 to individuals inserted in these centers. Statistical analyses were performed using Wilcoxon test, Spearmancorrelation and Fisher’s exact test, with a significance level of p<0.05. According to the results, 60% of the subjects didnot present participation restriction, and high values of availability and satisfaction of the support offered were observed.The family and health professionals can be highlighted as this source of support. The emotional type of social supportis noteworthy, as individuals with leprosy who had disabilities and those without participation restriction showed anassociation with the satisfaction of that support. It was concluded that social support can be seen as a protective factor,making it essential to listen to the individual, not losing sight of the notion that care does not refer only to the visiblesigns of the disease, but rather the whole social context to which the carrier is inserted

Percepção do estigma e repercussões sociais em indivíduos com hanseníase / Perception of stigma and social impacts on individuals with Hansen's disease / Percepción del estigma y efectos sociales en personas con enfermedad de Hansen

Os portadores de hanseníase vivenciam situações de preconceito que, com o estigma e a discriminação, culminam para o isolamento social e a restrição dos relacionamentos sociais. Este estudo teve o objetivo de avaliar a percepção do estigma nos indivíduos com hanseníase e suas repercussões sociais. Caracterizou-se por um estudo qualitativo mediante aplicação de entrevistas semiestruturadas em 20 usuários cadastrados para tratamento poliquimioterápico nas unidades de referência na Zona da Mata Mineira, no primeiro semestre de 2014. A análise foi realizada por meio da análise de conteúdo e foram definidas as seguintes categorias de análise: Desconhecimento sobre a doença; Diagnóstico e cura; Discriminação e medo; Encobrimento da doença; Apoio social; e Vínculo e participação social. O desconhecimento sobre a doença interfere no enfrentamento por parte dos indivíduos e, aliado ao receio da discriminação, foi suficiente para que eles ocultassem seu diagnóstico para os outros. Dessa forma, não foi possível perceber nenhuma alteração em seu vínculo social. Destacaram-se as diversas reações emocionais no momento do diagnóstico além da ênfase dada à cura pelos entrevistados. Neste trabalho, ficou evidente que o encobrimento da doença e o suporte social atuaram como fatores de proteção que impediram momentos de discriminação e restrição de participação social.

The individuals with Hansen's disease experience situations of prejudice that, together with stigma and discrimination, culminate in social isolation and restrictions in social relationships. This study aimed to evaluate the perception of stigma in individuals with Hansen's disease and its social repercussions. It was configured as a qualitative study, by means of semi-structured interviews with 20 users registered to chemotherapy treatment in reference units of Zona da Mata Mineira, in the first half of 2014. The analysis was performed through content analysis and the following categories were defined: Lack of knowledge about the disease; Diagnosis and cure; Discrimination and fear; Concealment of the disease; Social support; and Bond and social participation. Lack of knowledge about the disease interferes with the individual's ability to cope with it, and coupled with fear of discrimination, it was enough for them to conceal their diagnosis from others. Thus, it was not possible to notice any changes in their social bonds. The different emotional reactions at the moment of diagnosis stood out, in addition to the emphasis on healing given by respondents. In this study, it became clear that the concealment of the disease and the social support acted as protective factors that prevented moments of discrimination and restriction in social participation.

Las personas con enfermedad de Hansen viven situaciones de prejuicio que, junto con el estigma y la discriminación, culminó con el aislamiento social y la restricción de las relaciones sociales. Este estudio tuvo como objetivo evaluar la percepción de estigma en personas con enfermedad de Hansen y sus repercusiones sociales. Caracterizado por un estudio cualitativo mediante la aplicación de entrevistas semiestructuradas con 20 usuarios registrados a tratamiento de quimioterapia en las unidades de referencia en la Zona da Mata Mineira, en el primer semestre de 2014. Se realizó el análisis mediante el análisis de contenido y las siguientes categorías del análisis se definieron: La ignorancia sobre la enfermedad; El diagnóstico y la cura; La discriminación y el miedo; El ocultamiento de la enfermedad; El apoyo social; y Enlace y la participación social. La ignorancia sobre la enfermedad interfiere con afrontamiento de los individuos y, junto con el temor a la discriminación fuera suficiente para ellos para ocultar su diagnóstico a los demás. Por lo tanto, no fue posible notar cualquier cambio en su enlace social. Destacado las diferentes reacciones emocionales al momento del diagnóstico, además del énfasis en la curación por los encuestados. En este estudio, se hizo evidente que el ocultamiento de la enfermedad y el apoyo social actuó como factores de protección que impedían momentos de la discriminación y la restricción de la participación social.

Diagnóstico tardío de lepra lepromatosa. A propósito de un caso / No disponible

La lepra es una enfermedad infecciosa crónica, que afecta piel y nervios periféricos, la mucosa de las vías respiratorias superiores y también los ojos, además de algunas otras estructuras, ocurre en personas de cualquier edad y de ambos sexos causadas por el Mycobacterium leprae. El diagnóstico precoz reviste gran importancia ya que cura al enfermo, interrumpe la cadena de transmisión y evita las discapacidades. Presentamos un paciente masculino de 46 años de edad, trabajador agrícola sin antecedentes epidemiológicos conocidos y sin percepción del riesgo de la enfermedad que ingresa en el hospital municipal de Florida con fiebre, dolores articulares y lesiones en piel, diagnosticándose una lepra lepromatosa, discapacidad grado 2 según clasificación de la OMS dado por la deformidad de manos y pies, la pérdida de la estructura y la rigidez, constituyendo un diagnóstico tardío

Leprosy is an infectious disease with a chronic evolution that affects skin, peripheral nerves, upper respiratory tract and other structures. It appears in individuals of any age or sex and its etiological agent is Mycobacterium leprae. An early diagnosis is essential for preventing incapacities and interrupting the chain of transmission. We present a case of a 46 year old male, field worker, with a previous clinical history and no reception of the risk of illness. He entered the general hospital in Florida with fever, joint pains and skin lesions and was diagnosed of lepromatous leprosy, with grade 2 disabilities according to the WHO classification of the hand, feet and eye deformities, all the cause of a late diagnosis

Lepra. Impacto psicosocial / Leprosy. Psychosocial impact

Las enfermedades infecciosas se han convertido en un importante problema de salud, y reto para científicos, médicos e investigadores. En la actualidad son cientos de miles de personas que padecen de Lepra. El estigma y las discapacidades producidas los convierten en inhabilitados sociales. La aparición de la Bioética como nuevo paradigma del pensamiento médico, con sus principios de beneficencia, no maleficencia, autonomía y justicia, ha conmocionado al mundo de las ciencias médicas. Se realiza un análisis filosófico de un dilema bioético importante en nuestro medio: la ética médica y la Enfermedad de Hansen (Lepra), el humanismo como base de la relación médico paciente y la reflexión acerca del impacto psicosocial y económico de la Lepra. Se realizan algunas reflexiones que debe tener en cuenta el médico y enfermera de familia, así como el resto del Equipo Básico de Salud y los trabajadores de la Atención Primaria, con el paciente de Lepra. Se concluye que la relación médico-paciente en enfermos de Lepra requiere un humanismo vivo y desde el punto de vista (AU)

Infectious illnesses are an important health problem and a challenge for scientists, doctors and investigators. At the present time there are hundreds of thousands of people suffering from leprosy. The stigma and the inabilities produced makes them socially disabled. The appearance of Bioethics as a new paradigm of medical thought, with its charity principles, non balefulness, autonomy and justice, has revolutionised the world of the medical sciences. A philosophical analysis of an important dilemma ofbioethics in our environment is performed: the medical ethics and Hansen’s illness (leprosy), humanism as the base of the patient- doctor relationship and the reflection in the impact psychosocial and economic impact of leprosy. Some reflections that doctors and nurses, as well as the rest of the Basic Health Team and Primary Attention workers should bear in mind when dealing with leprosy patients are offered. The conclusion is that the doctor-patient relationship when dealing with leprosy requires active humanism and, psychosocially, it is necessary to conquer the taboo and the discrimination that leprosy sparks off in the community (AU)

Community-based needs assessment of leprosy patients in Chamrajanagar district, Karnataka, India.

OBJECTIVES: To assess the medical, disability prevention and rehabilitation and psychosocial needs of leprosy patients. DESIGN: Community-based cross sectional study. RESULTS: 259 registered leprosy-affected people were studied. 26% of subjects had presented by voluntary reporting. The mean detection delay was 8.25 months (SD 6.45). 66.8% of the study subjects had received regular treatment. Knowledge about multi-drug therapy (MDT) was satisfactory in 44.4% whereas knowledge of reactions was highly unsatisfactory. 7.7% had leprosy reactions among which only 25 received medical care. Disability proportion was 20.1% out of which 8.5% had Grade 1 and 11.6% had Grade 2 deformity. All these disabled individuals needed skin care, 44.2% of them needed wound care and 36.5% needed joint care. There was wide discrepancy between need for self care, training received and resources available for practising the same. The extent of dehabilitation was more among subjects with visible deformities. CONCLUSION: Medical needs identified in study subjects include capacity building of patients regarding MDT & reactions, plus awareness generation in general community such that voluntary reporting is enhanced and the detection dela shortened in the district. Strengthening drug inventory and distribution systems fo uninterrupted supply of drugs is essential. There is a need to reorient health care staff regarding leprosy management and DPMR. Rehabilitation needs identified are capacity building with regard to prevention of deformity and supplies (POD tool kit for self care) for the same. It is recommended that the district heath system should conceptualise and implement an evidence-based field level disability care and prevention programme, with community-based rehabilitation approach.

Transfer of disability care of leprosy to the affected persons and the community members.

Bargarh district in the western Orissa had high leprosy burden and LEPRA India supported in control activities. Its main focus was on POD care with community participation. After motivation and capacity building, it transferred the responsibility of POD care to affected persons, family, community partners and GHS staff in 2006. The effectiveness of this approach was evaluated in 2009. With personal contact responses from 112 (17%) persons with disability and 18 stakeholders were obtained. Result shows 98% affected persons are staying with family; 92% are practicing self-care; 92% felt self-care is beneficial; 57% and 36% are using commercial and MCR footwear respectively. Surgical correction of deformity is maintained in 80% of cases. Difficulty in activity and in community participation was experienced in about one third of affected persons the latter is mostly due to self stigma. The facilitators were happy with their beneficiaries.

Social implications of leprosy in the Netherlands--stigma among ex-leprosy patients in a non-endemic setting.

BACKGROUND: In the Netherlands, leprosy is a rare and non-endemic disease, still occurring as an 'import disease'. Moreover a considerable group of people affected by leprosy, originating mainly from the former Dutch colonies, suffer from neuropathic complications. This study investigates the social implications of leprosy for those affected in the Netherlands. METHODS: Thirty-one people affected were interviewed as well as six medical leprosy experts. The social implications were measured by means of semi-structured interviews and the Participation Scale. RESULTS: Self-stigma, shame and secrecy were often reported. Discrimination and stigmatisation of ex-leprosy patients by people around them seems a less frequent problem. Yet, people affected by leprosy seem to be a forgotten group with a high social burden due to low self-esteem and reduced social participation. Medical experts do not seem to be aware of the severity of leprosy-related forms of stigma in their patients. Ex-leprosy patients lack sound disease-related information and support groups. Due to the low incidence and as a consequence, the lack of awareness among doctors, leprosy patients in the Netherlands are faced with substantial diagnostic delay (mean delay 1-8 years). CONCLUSIONS: Leprosy and its stigma affect the social lives of patients, even in a non-endemic area such as the Netherlands. Almost all respondents were affected by self-stigma. There is a need for 1) more information and support groups for patients, and 2) increased awareness among professionals.

A process report on physical and psychological determiners of social functioning in leprosy patients.

Management and rehabilitation of leprosy patients needs information aoout the social acceptance and its association with physical and psychological problems of the affected person. Ninety three leprosy patients (72 male and 21 female) were selected from outpatient department of the hospitals/clinics and their demographic and clinical informations were recorded. The patients were screened for common menta diseases using GHQ-60 (Bengali version). The social functioning was assessed using SSFI. Mean age was 35.19 +/- 12.5 years, 69.9% of the subjects were from urban areas. Multibacillary cases accounted for 60.2% of the cases, 21.5% of the patients had deformity, 53.8% of the patients screened positive for common psychiatric diseases. Social functioning impairment of mild, moderate and severe level was 9.7%, 82.8, and 7.5% respectively. On Univariate analysis, presence of deformity was the only variable showing significant association with moderate to severe degree of social impairment. Using decision tree (Exhaustive CHAID) analysis, presence of deformity along with urban residence was strongly predicted severe social functioning impairment. The results of the study show the need to formulate suitable psychosocial intervention strategy especially in the context of high psychiatric morbidity.

Hansen's disease recoverers as agents of change: a case study in Japan.

This manuscript addresses the role and contribution of people affected by Hansen's disease (leprosy), especially through the efforts of Zen-Ryo-Kyo, the National Hansen's Disease Sanatoria Residents' Association, in changing laws and attitudes in Japan since the 1950's. Health social movements are discussed in the Japanese context and more broadly. An important contribution of this manuscript is the explanatory description of the activities of Zen-Ryo-Kyo in achieving change through addressing issues related to social stigma and discrimination. The argument is made for expanding the scope of social movements to include all stigmatised illnesses and disabilities. Another significant point discussed is the need to move beyond defining Hansen's disease in medical and legal terms, and to redefine it as a public health and social issue to be solved.

Assessment of needs and quality care issues of women with leprosy.

OBJECTIVES: Leprosy causes not just physical but psychosocial and economic problems which are further magnified in women due to gender disadvantages especially in developing countries. In order to determine the needs and quality care issues of women leprosy patients attending a hospital/health care facility, a research project was done. DESIGN: All women leprosy patients attending a Leprosy Referral Hospital in Kolkata, India during 2006 were interviewed in depth and clinically assessed, using a standardised proforma. FINDINGS: Of 104 women studied, half below 40 years of age and 70% above 40 years, had visible disability, and some had diabetes, low back pain etc. Nearly 60% preferred to hide their disease but even so, some had social problems. Most women delayed going to hospital, until their husband/guardian felt it was necessary. They had to complete their household chores before setting out for the hospital, and after their return. A considerable amount of time was spent waiting at various service points which conflicted with their domestic work, and lowered their social worth if they were away too long. This de-motivated them from visiting hospitals, even for follow up visits. Medical advice given--such as avoiding prolonged walking and standing, working with hot utensils etc., was not practical. CONCLUSION: Hospitals can do much to address the needs of women leprosy patients and. provide quality services. National programmes should give a higher priority to offering culturally acceptable health education to promote early reporting.

The sustainability of self-care in two counties of Guizhou Province, Peoples' Republic of China.

This paper presents the findings of a follow-up survey conducted in two rural counties of Guizhou Province, PRC where a programme to prevent disabilities amongst leprosy affected people had been conducted. An initial 3-year programme had been conducted. One year after the final evaluation of the programme, a team was deployed to conduct a survey in the area. The objective of the survey was to establish the level of adherence to self-care. It was found that 87% of the sample of people living in leprosy villages that were surveyed (n = 31) and 50% of the sample of people living in general communities (n = 50) had continued to apply self-care. Interviews with family members suggested that 18 of the 27 self-care practising subjects living in the leprosy villages received encouragement or active support from family members (9 were single people). Twenty three of the 25 self-care practising subjects living in the communities also received family support (2 were single people). Family support was a highly significant factor influencing adherence in the community (OR = 15.8, CI = 3.0 to 83) but it may not have been the primary motivating factor in the leprosy villages where single people were just as likely to have adhered to self-care than people who were living in families (OR 0.5, CI = 0.06 to 4.2). The prevalence of foot ulceration among that population was recorded but a hypothetical association between the prevalence of foot ulceration and self-care adherence could not be investigated due to insufficient data to address the potential effects of confounding variables. Thirty-eight percent of subjects who did not practice self-care presented with ulceration or foot cracks (n = 29) compared with only 25% of people who did (n = 52).

[Elderly depression in a Japanese leprosarium].

This report described the distribution of the patients who had been treated by psychiatrist in the National Tamazenshouen Sanatorium, a major leprosarium in Japan. We also investigated the characteristics of patients who had suffered a depressive episode during the last 5 years. Somatic symptoms were the predominant symptoms and were not limited to clinical signs unique to leprosy. The period of isolation was not significantly correlated with the geriatric depression scale. Forty-two residents had committed suicide since the leprosarium was established in 1909. The findings of this study emphasize the importance of psychosocial intervention to the residents.

Improving adherence to antiretroviral therapy.

Antiretroviral therapy (ART) has transformed HIV infection into a treatable, chronic condition. However, the need to continue treatment for decades rather than years, calls for a long-term perspective of ART. Adherence to the regimen is essential for successful treatment and sustained viral control. Studies have indicated that at least 95% adherence to ART regimens is optimal. It has been demonstrated that a 10% higher level of adherence results in a 21% reduction in disease progression. The various factors affecting success of ART are social aspects like motivation to begin therapy, ability to adhere to therapy, lifestyle pattern, financial support, family support, pros and cons of starting therapy and pharmacological aspects like tolerability of the regimen, availability of the drugs. Also, the regimen's pill burden, dosing frequency, food requirements, convenience, toxicity and drug interaction profile compared with other regimens are to be considered before starting ART. The lack of trust between clinician and patient, active drug and alcohol use, active mental illness (e.g. depression), lack of patient education and inability of patients to identify their medications, lack of reliable access to primary medical care or medication are considered to be predictors of inadequate adherence. Interventions at various levels, viz. patient level, medication level, healthcare level and community level, boost adherence and overall outcome of ART.

[Case report revisited: review of the 6 cases].

Out of the cases we experienced in our 11-year service in sanatorium, 6 cases were selected to review the medical care and social environment that each patient was involved. Two cases were the residents in a sanatorium and 4 cases were in the community, including 2 cases having foreign nationality. The review of these cases drew the following conclusions. 1. We must be aware of our responsibility for early diagnosis and treatment of leprosy to prevent tragic disability. 2. The fixed duration of MDT/MB may not be enough for LL cases having high bacterial load before treatment. Enough duration of chemotherapy and follow-up is desired to prevent avoidable disability. 3. Basically, the treatment of leprosy should be carried on in outpatient clinic. The duration of hospitalization, if necessary, should be shortest to enhance patient's motive for treatment. 4. Intermittent administration of RFP must be done under direct observation. 5. For foreign patients not accustomed to the life in Japan or elderly patient living by oneself, various supports from community are greatly helpful to achieve the long course of leprosy treatment. Through these supports, we can expect community enlightening that may promote rehabilitation of the people once suffered from leprosy.

Being a female leprosy patient in south India.

The problems of women patients as revealed by a case study of a woman patient and a questionnaire study of 100 leprosy patients (47 men and 53 women) are presented. These include, besides general ones like ignorance of facts about the disease, specific ones like lack of privacy during clinical examination, indifference towards women's feelings and difficulties in communicating with male workers. A greater sensibility towards the sentiments and problems of women patients, on the part of the health service is required to amend the situation. Recruiting more women workers might help in this regard.

Health-related quality of life for patients with progressive multiple sclerosis: influence of rehabilitation.

BACKGROUND AND PURPOSE: The health-related quality of life of patients with multiple sclerosis (MS) is an important aspect of care outcome. The purpose of this study was to compare health-related quality of life between patients who received weekly comprehensive outpatient rehabilitation for 1 year and a group that did not receive rehabilitation. SUBJECTS: Twelve patients receiving outpatient care for chronic progressive MS (mean age = 44.5 years, SD = 11.6) were compared with 19 similar patients (mean age = 49.2 years, SD = 9.2) on a waiting list who were not receiving outpatient care. METHODS: A pretest-posttest longitudinal design was used to descriptively compare outcome measures. Multivariate regression analyses were used to determine which variables, controlled for baseline health status and other relevant patient characteristics, were related to the best outcomes at the time of the 1-year follow-up. RESULTS: The treatment group showed improvements in six health status measures on the Rand 36-Item Health Survey 1.0 (SF-36) that were not improved in the wait-listed group. Outpatient treatment was the sole predictor of positive outcome for energy/fatigue (partial R2 = .43) and change in general health (partial R2 = .19). In addition, the treatment group was associated with a positive outcome (together with other independent variables) in the domains of social function and social support. CONCLUSION AND DISCUSSION: Patients with chronic progressive forms of MS appear to derive benefits from an ongoing comprehensive outpatient rehabilitation program. [Di Fabio RP, Choi T, Soderberg J, Hansen CR. Health-related quality of life for patients with progressive multiple sclerosis: influence of rehabilitation.