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1.
PLoS Negl Trop Dis ; 15(4): e0009329, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33798199

RESUMO

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.


Assuntos
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
2.
PLoS Negl Trop Dis ; 14(3): e0008173, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32155158

RESUMO

BACKGROUND: Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. METHODOLOGY: The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. RESULTS: A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. CONCLUSION: This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.


Assuntos
Filariose Linfática/psicologia , Elefantíase/psicologia , Saúde da Família , Família/psicologia , Hanseníase/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Etiópia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Estigma Social , Adulto Jovem
3.
Indian J Dermatol Venereol Leprol ; 86(4): 375-381, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31857521

RESUMO

BACKGROUND: Psoriasis is a systemic autoinflammatory disease that is related to an increased risk of organic and psychological comorbidities. Type D personality has been related to poor quality of life and worse physical and psychological outcomes in different diseases. AIMS: The aim of this study is to explore whether type D personality is associated with an increased risk of presenting physical and/or psychological comorbidities, their relationship with the capacity of social adaptation, and health-related quality of life (HRQOL) in patients with psoriasis. METHODS: This was a cross-sectional study. In all, 130 patients with moderate to severe psoriasis were included in this study. Participants completed the DS14 test and different validated questionnaires regarding quality of life and psychological morbidities. RESULTS: Type D personality was present in 38.4% (50/130) of the participants of the study. Patients with psoriasis and type D personality presented a higher risk of depression and anxiety. We observed that type D personality was associated with a lower educational level. These patients also presented a worse HRQOL in different dimensions of the Short Form Health Survey-36 questionnaire, more sleep problems, poor social adaptation, and a higher frequency of sexual disturbances. LIMITATIONS: Due to the cross-sectional design of the study, we could not confirm causality. Selection of sample was not random. Diagnoses of physical comorbidity were collected through clinical interview of patients under active treatment, which may imply a classification bias. CONCLUSION: Type D personality could represent a frequent personality profile in patients with psoriasis that could identify subjects with poor coping abilities to the disease with poorer levels of quality of life, increased psychological comorbidities, and inadequate social adaptation mechanisms.


Assuntos
Personalidade , Psoríase/psicologia , Qualidade de Vida/psicologia , Ajustamento Social , Adaptação Psicológica , Adulto , Ansiedade/etiologia , Estudos Transversais , Depressão/etiologia , Escolaridade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Saúde Sexual , Transtornos do Sono-Vigília/etiologia , Inquéritos e Questionários
4.
Int J Mycobacteriol ; 7(3): 247-250, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30198504

RESUMO

Background: This study aimed to explore the disease severity perceived by people affected with leprosy reporting at leprosy referral center, Purulia, West Bengal, India. Methods: A cross-sectional study was conducted among 358 persons affected by leprosy above the age of 18 and married who were reporting at tertiary leprosy referral hospital, Purulia, West Bengal, India. A semistructured questionnaire was prepared to collect the demographic profile, disease profile, and perceived severity of the disease. Results: Among the participants, 41% of them were female, 60% were aged between 18 and 45 years, 58% were literate, and 40% of the participants had physical disability. The participants had multiple feelings of fear, anxiety and sorrow when first diagnosed as leprosy affected. Majority (69%) of the participants had fear of the disease. A significant association was present among males and females feeling fear of leprosy and the female feared more than male. Conclusion: The present study emphasizes the need for continuous counseling and health education for persons affected with leprosy to avoid or minimize the psychological problems. Periodical screening and counseling will improve their psychosocial well-being and quality of life.


Assuntos
Pessoas com Deficiência/psicologia , Hanseníase/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Medo/psicologia , Feminino , Humanos , Índia/epidemiologia , Hanseníase/diagnóstico , Hanseníase/epidemiologia , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto Jovem
6.
J Peripher Nerv Syst ; 23(2): 120-123, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29687564

RESUMO

Chronic polyneuropathy is a disabling condition of the peripheral nerves, characterized by symmetrical sensory motor symptoms and signs. There is paucity of studies on the etiological spectrum of polyneuropathy and its impact on quality of life (QoL). The present cross-sectional study in a referral based tertiary care center in North India found diabetic neuropathy as the commonest cause (25.5%) amongst 212 patients with chronic polyneuropathy. Idiopathic axonal polyneuropathy was present in 14.2% patients. Leprosy presenting as confluent mononeuritis multiplex constituted 11.3% of the patients. Additionally, it revealed a significantly worse QoL in these patients in all domains measured by short form (SF-36). This is the first study conducted in India to determine the QoL in chronic neuropathy patients. The current study demonstrates the clinical feasibility and applicability of the SF-36 generic health status in patients with polyneuropathies.


Assuntos
Neuropatias Diabéticas/diagnóstico , Polineuropatias/diagnóstico , Qualidade de Vida/psicologia , Adulto , Estudos Transversais , Neuropatias Diabéticas/fisiopatologia , Neuropatias Diabéticas/psicologia , Feminino , Humanos , Índia , Masculino , Pessoa de Meia-Idade , Polineuropatias/fisiopatologia , Polineuropatias/psicologia , Avaliação de Sintomas
7.
Indian J Dermatol Venereol Leprol ; 84(4): 431-436, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-28485307

RESUMO

Background: Treatments for autoimmune blistering disease carry significant risks of medical complications and can affect the patient's quality of life. Recently, the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire was developed in Australia. Objective: The objective of this study was to evaluate the reliability and validity of the Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire in Chinese patients with autoimmune blistering diseases. Methods: The Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire was produced by forward-backward translation and cross-cultural adaptation of the original English version. Autoimmune blistering disease patients recruited in the study self-administered the Chinese Treatment of Autoimmune Bullous Disease Quality of Life questionnaire, the Dermatology Life Quality Index and the 36-item Short-Form Health Survey. Reliability of the Chinese Treatment of Autoimmune Bullous Disease Quality of Life was evaluated using internal consistency and test-retest (days 0 and 7) methods. Validity was analyzed by face, content, construct, convergent and discriminant validity measures. Results: A total of 86 autoimmune blistering disease patients were recruited for the study. Cronbach's alpha coefficient was 0.883 and the intraclass correlation coefficient was 0.871. Face and content validities were satisfactory. Convergent validity testing revealed correlation coefficients of 0.664 for the Treatment of Autoimmune Bullous Disease Quality of Life and Dermatology Life Quality Index and -0.577 for the Treatment of Autoimmune Bullous Disease Quality of Life and 36-item Short-Form Health Survey. With respect to discriminant validity, no significant differences were observed in the Treatment of Autoimmune Bullous Disease Quality of Life scores of men and women (t = 0.251, P = 0.802), inpatients and outpatients (t = 0.447, P = 0.656), patients on steroids and steroid-sparing medications (t = 0.672, P = 0.503) and patients with different autoimmune blistering disease subtypes (F = 0.030, P = 0.971). Limitations: Illiterate patients were excluded from the study. The patients were from a single hospital and most of their conditions were in a relatively stable status. Conclusion: The Chinese version of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire is a reliable and valid instrument to measure treatment burden and to serve as an end point in clinical trials in Chinese autoimmune blistering disease patients.


Assuntos
Doenças Autoimunes/diagnóstico , Comparação Transcultural , Qualidade de Vida , Dermatopatias Vesiculobolhosas/diagnóstico , Inquéritos e Questionários/normas , Tradução , Adolescente , Adulto , Idoso , Doenças Autoimunes/etnologia , Doenças Autoimunes/psicologia , China/etnologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Autorrelato/normas , Dermatopatias Vesiculobolhosas/etnologia , Dermatopatias Vesiculobolhosas/psicologia , Adulto Jovem
8.
Postepy Hig Med Dosw (Online) ; 71(0): 1115-1122, 2017 Dec 11.
Artigo em Inglês | MEDLINE | ID: mdl-29225203

RESUMO

A stigma is currently defined as a discrediting mark, biological or social, that sets a person off from others and disrupts interactions with them. People who differ from social norms in some respect are often negatively labeled. A number of medical conditions are recognized at present as stigmatizing their sufferers and certain skin diseases are among them. The article aimed to analyze the current understanding about stigmatization among dermatological patients, especially those with psoriasis. We performed our search on PubMed up to November 2016 and utilized combinations of key phrases containing such words as stigmatization, skin, dermatology, names of various skin conditions (psoriasis, vitiligo, acne, etc.). Following a precise selection process, 58 articles remained. Stigmatization seems to be a common and important problem in dermatology. Psoriasis appears as the most frequently studied skin disease (37.2% of articles). It was followed by vitiligo (13.7%) and leprosy (8.6%). Mainly, the visibility of skin lesions as well as cultural factors contribute to the feeling of stigmatization. There is a need for more research in the field of stigmatization in dermatological conditions and an urgent need for the creation of special anti-stigmatization program/programs for patients suffering from dermatoses.


Assuntos
Emoções , Psoríase/psicologia , Qualidade de Vida/psicologia , Estigma Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Dermatologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Inquéritos e Questionários
10.
Birth Defects Res ; 109(4): 296-299, 2017 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-28398668

RESUMO

BACKGROUND: Between 1957 and 1962 thalidomide was used as a nonaddictive, nonbarbiturate sedative that also was successful in relieving the symptoms of morning sickness in early pregnancy. Infamously, thousands of babies were subsequently born with severe birth defects. The drug is used again, today, to successfully treat leprosy, and tragically, there is a new generation of thalidomide damaged children in Brazil. While the outward damage in babies has been documented, the effects of the damage upon the survivors as they grow up, the lifestyle changes and adaptations required to be made, as well as studies into ageing in survivors, has received little attention and remains understudied. METHODS: A unique multidisciplinary meeting was organized at the University of York bringing together thalidomide survivors, clinicians, scientists, historians, and social scientists to discuss the past, the current and the future implications of thalidomide. RESULTS: There is still much to learn from thalidomide, from its complex history and ongoing impact on peoples' lives today, to understanding its mechanism/s to aid future drug safety, to help identify new drugs retaining clinical benefit without the risk of causing embryopathy. CONCLUSION: For thalidomide survivors, the original impairments caused by the drug are compounded by the consequences of a lifetime of living with a rare disability, and early onset age-related health problems. This has profound implications for their quality of life and need for health and social care services. It is vital that these issues are addressed in research, and in clinical practice if thalidomide survivors are to "age well". Birth Defects Research 109:296-299, 2017. © 2017 Wiley Periodicals, Inc.


Assuntos
Anormalidades Induzidas por Medicamentos/psicologia , Envelhecimento/efeitos dos fármacos , Hipnóticos e Sedativos/efeitos adversos , Imunossupressores/efeitos adversos , Hansenostáticos/efeitos adversos , Talidomida/efeitos adversos , Anormalidades Induzidas por Medicamentos/patologia , Anormalidades Induzidas por Medicamentos/fisiopatologia , Adulto , Envelhecimento/patologia , Criança , Pessoas com Deficiência/psicologia , Feminino , Humanos , Hipnóticos e Sedativos/administração & dosagem , Imunossupressores/administração & dosagem , Estudos Interdisciplinares , Hansenostáticos/administração & dosagem , Pessoa de Meia-Idade , Farmacovigilância , Gravidez , Qualidade de Vida/psicologia , Talidomida/administração & dosagem , Reino Unido
11.
Enferm. glob ; 16(46): 336-348, abr. 2017. tab
Artigo em Espanhol | IBECS | ID: ibc-161738

RESUMO

La lepra, junto con el envejecimiento trae cambios físicos que afectan a la dependencia y a la autonomía. El objetivo fue evaluar el aspecto físico y el impacto en la calidad de vida y la independencia de las personas mayores afectadas por la lepra. Estudio descriptivo con un enfoque cuantitativo, con 60 ancianos en dos centros de rehabilitación en Sao Luis - MA. Se utilizó el dominio físico de la WHOQOL - bref y Facetas «Habilidades sensoriales» y «Autonomía» del WHOQOL -.OLD, de la Organización Mundial de la Salud. Se observó problemas con el dolor / malestar (31,3%), fatiga (21 3%) y el sueño / descanso (23,3%), actuando en la incapacidad para el transporte (23,3%), la realización de actividades cotidianas (16,6%) y el trabajo (33,3%), así como relacionados con la dependencia de medicamentos / tratamientos (56,6%). La calidad de vida se alteró por la pérdida sensorial (33,3%), así como la capacidad de realizar actividades (28,3%) e interactuar con personas (23,3%). En cuanto a la autonomía, la mayoría de las personas mayores se sintieron libres para tomar decisiones (53,3%) y se sintieron respetadas por tomarlas (55,0%), aunque afirmaron no hacer todo lo que quisieran (38,3 %). Por lo tanto, se concluye que la enfermedad ante el proceso de la senescencia y / o proceso de la senilidad puede haber contribuido negativamente sobre los aspectos físicos y calidad de vida de las personas mayores (AU)


A hanseníase, aliada ao processo de envelhecimento, traz alterações físicas que interferem na dependência e autonomia. O objetivo foi avaliar o aspecto físico e as repercussões na qualidade de vida e autonomia de idosos afetados por hanseníase. Estudo descritivo, de abordagem quantitativa, com 60 idosos em dois Centros de Reabilitação em São Luís - MA. Utilizou-se o Domínio Físico do WHOQOL - bref e as Facetas «Habilidades Sensoriais» e «Autonomia» do WHOQOL - OLD, da Organização Mundial de Saúde. Observou-se problemas com dor/desconforto (31,6%), fadiga (21,6%) e sono/repouso (23,3%), atuando na incapacidade para locomoção (23,3%), realização de atividades diárias (16,6%) e trabalho (33,3%), bem como relacionados à dependência de medicamentos/tratamentos (56,6%). A qualidade de vida foi alterada por perdas sensoriais (33,3%), bem como a capacidade de realizar atividades (28,3%) e interagir com pessoas (23,3%). No que tange a autonomia, a maioria dos idosos se sentia livre para tomar decisões (53,3%) e sentia-se respeitada por tomá-las (55,0%), embora afirmasse não realizar tudo o que deseja (38,3%). Assim, conclui-se que a doença, diante do processo de senescência e/ou senilidade, pode ter contribuído negativamente sobre os aspectos físicos e qualidade de vida dos idosos (AU)


Leprosy, coupled with aging process, brings physical changes, which interfere in dependency and autonomy. The objective was to evaluate the physical aspect and the impact on the quality of life and the autonomy of elderly people affected by leprosy. This is a descriptive study of a quantitative approach, conducted with 60 elderly people in two rehabilitation centers in São Luís (MA). We used the Physical Domain of the WHOQOL-Bref and facets «Sensory Skills» and «Autonomy» of WHOQOL-OLD, from the World Health Organization. There were observed problems with pain/discomfort (31.6 percent), fatigue (21.6%) and sleep/rest (23.3 percent), acting in the inability for locomotion (23.3%), carrying out daily activities (16.6%), and work (33.3 percent), as well as related to the dependency on drugs/treatments (56.6%). The quality of life has changed by loss of sensory (33.3%), as well as the ability to perform activities (28.3%) and interact with people (23.3%). Regarding autonomy, most seniors felt free to make decisions (53.3%) and respected by taking them (55.0%), although stated that do not perform all who desire (38.3%). Thus, it was concluded that the disease, before the process of senescence and/or senility, might have contributed negatively about the physical aspects and quality of life of the elderly (AU)


Assuntos
Humanos , Masculino , Feminino , Idoso , Hanseníase/enfermagem , Hanseníase/psicologia , Qualidade de Vida/psicologia , Autonomia Pessoal , Envelhecimento/psicologia , Pessoas com Deficiência/psicologia , Perfil de Impacto da Doença , 25783/estatística & dados numéricos
12.
Artigo em Inglês | MEDLINE | ID: mdl-27088931

RESUMO

BACKGROUND: Acne vulgaris is known to impair many aspects of quality of life. However, the correlation of this impairment with clinical severity remains equivocal despite various school, community and hospital-based studies. AIM: A hospital-based study was undertaken to measure the impairment of quality of life of patients of acne vulgaris and correlate it with the severity of lesions. METHODS: This was a cross-sectional, questionnaire-based study in a cohort of 100 patients of acne vulgaris attending the outpatient department of our referral hospital. A physician measured the severity of lesions using the global acne grading system, and patients assessed quality of life by completing a questionnaire (Cardiff acne disability index). A correlation of these two was done; some additional correlations were brought out through demographic data collected from the patients. RESULTS: There was no correlation between the severity of acne vulgaris and an impaired quality of life. Patients who consumed alcohol and/or smoked cigarettes were found to have an impaired quality of life. While the severity of acne progressively lessened in older patients, the impact on quality of life increased. LIMITATIONS: The sample size was small and there was a lack of guaranteed reliability on the self-reported quality of life. CONCLUSION: The severity of acne vulgaris does not correlate with impairment in quality of life.


Assuntos
Acne Vulgar/epidemiologia , Acne Vulgar/psicologia , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Acne Vulgar/diagnóstico , Adolescente , Adulto , Estudos de Coortes , Estudos Transversais , Demografia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
13.
Rev Soc Bras Med Trop ; 48(2): 194-201, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25992935

RESUMO

INTRODUCTION: To analyze the knowledge, feelings and perceptions involving patients affected by leprosy, as a better understanding of these factors may be useful to decrease the stigma and prejudice associated with the condition. METHODS: The study cohort consisted of 94 patients who underwent treatment for leprosy at the Health Units in the City of Cuiabá, Mato Grosso (MT), Brazil. The study questionnaire included items to collect information on socio-demographic data, knowledge about the disease, stigma, prejudice, self-esteem and quality of life of leprosy patients. Bivariate analyses were used to assess the data based on the chi-square test with a 5% significance threshold. RESULTS: The results revealed that the study population consisted predominantly of males (55.3%) with an income between 1 and 3 times the minimum wage (67%). The survey respondents reported that the most significant difficulties related to the treatment were the side effects (44.7%) and the duration of the treatment (28.7%). A total of 72.3% of the subjects were knowledgeable about the disease, of whom 26.6% had the leprosy reaction. Stigma and prejudice were cited by 93.6% of the participants. Based on the responses, 40.4% of patients reported being depressed and sad, and 69.1% of the subjects encountered problems at work after being diagnosed. A total of 45.7% of the patients rated their quality of life between bad and very bad. CONCLUSIONS: Our results suggest that leprosy causes suffering in patients beyond pain and discomfort and greatly influences social participation.


Assuntos
Hanseníase/psicologia , Preconceito/psicologia , Qualidade de Vida/psicologia , Estigma Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Brasil , Estudos de Coortes , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
14.
Int J Psychiatry Med ; 49(3): 176-86, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25930737

RESUMO

BACKGROUND: Leprosy subjects are strongly affected not only by physical issues such as peripheral neuropathy but also by massive social exclusion that may be related to quality of life (QoL) impairment. However, there are as yet no studies evaluating the impact of perceived stigma in conjunction with neuropathy on QoL and the respective role of each one on QoL. OBJECTIVE: The present study aims to investigate the variations in clinical and socio-demographic profile of Hansen's disease patients with/without perception of social exclusion (PSE) and neuropathy as the impact of both conditions on their QoL. METHODS: A sample of 160 consecutive leprosy outpatients seeking treatment in two reference centers for leprosy in Brazil was recruited. Patients were assessed using a socio-demographic questionnaire, M.I.N.I. PLUS and SF-36. Data from medical records were also collected. Participants were divided into four groups: control group, perceived stigma, neuropathy, and stigma neuropathy. RESULTS: Of the 160 patients who consented to participate, 78.75% completed the survey. All four groups were similar in terms of demographic parameters, except for occupational status, which was compensated statistically. The group with neuropathy and PSE reported the worst QoL in half of the evaluated domains. The cross-sectional design does not allow cause and effect to be established between variables, and the relatively small sample size may limit the ability to demonstrate a relative decrease in QoL scores from the isolated variables analyzed. CONCLUSIONS: The results of this survey show that the presence of both neuropathy and PSE significantly increases impairment in QoL, especially in some specific domains.


Assuntos
Hanseníase/psicologia , Doenças do Sistema Nervoso Periférico/psicologia , Qualidade de Vida/psicologia , Isolamento Social/psicologia , Adolescente , Adulto , Idoso , Brasil , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
15.
Artigo em Inglês | MEDLINE | ID: mdl-25851764

RESUMO

BACKGROUND: Onychomycosis accounts for approximately half of all nail disorders and is usually asymptomatic. OBJECTIVES: To evaluate patients' recognition of fungal nail disease, concomitant fungal skin diseases, complications, and quality of life. METHODS: Patients from the fungal nail clinic were enrolled between May 2011 and April 2012. Patients' awareness of diseased nails was evaluated and the Dermatology Life Quality Index (DLQI) questionnaire was used to evaluate the impact of dermatologic disease on quality of life. RESULTS: A total of 110 patients with onychomycosis were enrolled in the study, of which 64 (58.2%) were female and the mean age was  60.8 years. The number of patients who were able to recognize the presence of onychomycosis was 71 (64.5%), while 32 (29.1%) and 7 (6.4%) were diagnosed by a dermatologist and other physicians, respectively. Multivariate analysis showed that patient recognition of the disease was significantly associated with female sex and young age. The mean DLQI score was  3.6. LIMITATION: Patient recall bias including the duration of fungal nail infection, long-term past history and previous treatment was a limitation of this study that affected DLQI scores. CONCLUSION: About half of onychomycosis patients, especially elderly males, could not recognize the disease by themselves. It is important for physicians to educate patients with risk factors for onychomycosis to recognize this condition early to prevent concomitant infection and complications, and to improve patients' well-being.


Assuntos
Dermatoses do Pé/diagnóstico , Dermatoses da Mão/diagnóstico , Onicomicose/diagnóstico , Qualidade de Vida , Autocuidado , Idoso , Estudos Transversais , Feminino , Dermatoses do Pé/psicologia , Dermatoses da Mão/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Onicomicose/psicologia , Educação de Pacientes como Assunto/métodos , Qualidade de Vida/psicologia , Autocuidado/psicologia
16.
Rev. Soc. Bras. Med. Trop ; 48(2): 194-201, mar-apr/2015. tab
Artigo em Inglês | LILACS | ID: lil-746231

RESUMO

INTRODUCTION: To analyze the knowledge, feelings and perceptions involving patients affected by leprosy, as a better understanding of these factors may be useful to decrease the stigma and prejudice associated with the condition. METHODS: The study cohort consisted of 94 patients who underwent treatment for leprosy at the Health Units in the City of Cuiabá, Mato Grosso (MT), Brazil. The study questionnaire included items to collect information on socio-demographic data, knowledge about the disease, stigma, prejudice, self-esteem and quality of life of leprosy patients. Bivariate analyses were used to assess the data based on the chi-square test with a 5% significance threshold. RESULTS: The results revealed that the study population consisted predominantly of males (55.3%) with an income between 1 and 3 times the minimum wage (67%). The survey respondents reported that the most significant difficulties related to the treatment were the side effects (44.7%) and the duration of the treatment (28.7%). A total of 72.3% of the subjects were knowledgeable about the disease, of whom 26.6% had the leprosy reaction. Stigma and prejudice were cited by 93.6% of the participants. Based on the responses, 40.4% of patients reported being depressed and sad, and 69.1% of the subjects encountered problems at work after being diagnosed. A total of 45.7% of the patients rated their quality of life between bad and very bad. CONCLUSIONS: Our results suggest that leprosy causes suffering in patients beyond pain and discomfort and greatly influences social participation. .


Assuntos
Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Hanseníase/psicologia , Preconceito/psicologia , Qualidade de Vida/psicologia , Estigma Social , Brasil , Estudos de Coortes , Estudos Transversais , Fatores Socioeconômicos , Inquéritos e Questionários
17.
Hansen. int ; 40(2): 48-58, 2015. tab
Artigo em Português | SES-SP, LILACS, SES-SP | ID: biblio-831084

RESUMO

A hanseníase é uma doença infectocontagiosa com evolução lenta e de natureza crônica, causando impacto no cotidiano dos sujeitos, como sofrimento, abandono, deformidades físicas e problemas psicossociais. Objetivos: Descrever o perfil clínico e socioeconômico, avaliar a qualidade de vida (QV), ocorrência de transtornos depressivos e o grau de incapacidade física de pessoas com hanseníase e suas correlações. Métodos: Estudo transversal, quantitativo, descritivo e analítico, desenvolvido no município de Uberaba (MG), em um centro de saúde especializado. Após o consentimento dos participantes foram realizadas entrevistas com aplicação dos questionários: Clínico e Socioeconômico; Inventário de depressão de Beck- BDI para avaliação dos graus de depressão; Questionário WHOQOL-bref para avaliação da QV. Posteriormente, o Formulário de Classificação de Incapacidades Físicas (IFH) foi preenchido por meio da revisão de prontuários. O estudo foi aprovado pelo comitê de ética local nº 2173/2014. Análises estatísticas descritivas foram realizadas...


Leprosy is a chronic and slowly progressing infectious disease that affects the daily lives of carriers, causing suffering, abandonment, physical deformities and psychosocial problems. Objectives: To describe the clinical and socioeconomic profile, evaluate the quality of life (QOL), occurrence of depressive disorders, and the degree of disability and investigate correlations between these variables in people with leprosy.Methods: This is a cross-sectional, quantitative, descriptive and analytical study, developed in a specialized health center of the city of Uberaba (MG). After receiving consent from the participants, interviews were conducted using questionnaires on clinical and socioeconomic aspects. Moreover, the Beck Depression Inventory (BDI) was used to assess the degree of depression and the WHOQOL-BREF questionnaire was used to assess QoL. Subsequently, the Physical Disability Rating (PDR) form was completed by reviewing patient records. The study was approved by the local Ethics Committee (no. 2173/2014). Descriptive and analytical statistical analysis were performed...


Assuntos
Humanos , Masculino , Feminino , Adolescente , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Adulto Jovem , Efeitos Psicossociais da Doença , Hanseníase/complicações , Hanseníase/psicologia , Depressão/psicologia , Perfil de Saúde , Pessoas com Deficiência/psicologia , Qualidade de Vida/psicologia
18.
Qual Life Res ; 23(4): 1345-51, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24293029

RESUMO

INTRODUCTION: Quality of life (QoL) is a broad concept that has become more important during the last decades. Despite this fact, few studies have been conducted to evaluate leprosy patients, none of which has specifically addressed patients with leprosy sequels submitted to home care. PURPOSE: To evaluate the QoL of leprosy sequel bearers and the factors that may affect their perception of their condition. METHODS: WHOQoL-BREF, a questionnaire developed by the World Health Organization, was administered to 32 people living in the coverage area of a former leprosarium. Patient socio-demographic and care-related caregiver data were collected. Activities of daily living and Instrumental Activities of Daily Living Scales were used to evaluate autonomy. Mini-Mental Status Examination was used to evaluate cognitive status. Simple linear regression analyses were conducted using SPSS Statistical Software and the non-standardized beta values were presented. RESULTS: The patients were mainly female, widowed, elderly, with bone sequels; all had impairment of at least one Instrumental Daily Living Activity. QoL scores were 12.35 in a 4-20 scale (52.18 %) in the physical domain, 12.95 (55.94 %) in the psychological health domain, 13.18 (57.40 %) in the environment domain, and 16.09 (75.56 %) in the social domain. Univariate analysis suggests that instrumental daily activity "capacity of shopping," marital status, and caregiver age were associated with self-perceived QoL. Data were also compared to those from other studies. CONCLUSION: Individuals affected by leprosy had low QoL scores in the physical and psychological health domains and high scores in the social domain. The factors that impact their QoL seem to be related to specific conditions found in the leprosarium and the previous isolation practices.


Assuntos
Atividades Cotidianas , Indicadores Básicos de Saúde , Hanseníase/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Idoso , Brasil , Estudos Transversais , Feminino , Serviços de Assistência Domiciliar , Humanos , Modelos Lineares , Masculino , Saúde Mental , Percepção , Escalas de Graduação Psiquiátrica , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Organização Mundial da Saúde
19.
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 5(3): 104-113, jul.-set. 2013.
Artigo em Inglês, Português | LILACS, BDENF | ID: lil-683552

RESUMO

Objetivo: Apreender as representações sociais da hanseníase para o ex-doente do Hospital Colônia Getúlio Vargas, Bayeux/PB. Método: Estudo de abordagem qualitativa e representacional. Resultados: O habitus foi definido através do tempo longo e o tempo vivido na construção de comportamentos situacionais e das diversidades. O contexto asilar é revelado através do tempo. Na esfera da religiosidade, o seu adoecimento é compreendido como uma herança de um castigo divino. O contato com a sociedade como aspecto caritativo não diminuiu o sentimento de excluído pelo preconceito e estigma que permeia o portador de hanseníase. Conclusão: Podemos inferir que, ao recontar sua vida, os sujeitos vivenciaram uma condição quase-experimental, rememorando histórias marcantes naquele contexto


Objective: To understand the social representations of leprosy for the former patient of the Getúlio Vargas Colony Hospital, Bayeux/PB/Brazil. Method: Study of qualitative and representational approach. Results: The habitus was defined through the long and the experienced times in the building of situational behaviors and diversities. The asylum context is reveled through the time. In the realm of religiousness, their illness is understood as a heritage of a divine punishment. The contact with the society as a charity aspect did not reduce the feeling of being excluded by the prejudice and stigma that pervade the patient bearer of leprosy. Conclusion: We could infer that, when retelling their lives, the subjects lived a quasi-experimental condition, by recalling striking histories at that context


Objetivo: Apreender as representações sociais da hanseníase para o ex-doente do Hospital Colônia Getúlio Vargas, Bayeux/PB. Método: Estudo de abordagem qualitativa e representacional. Resultados: O habitus foi definido através do tempo longo e o tempo vivido na construção de comportamentos situacionais e das diversidades. O contexto asilar é revelado através do tempo. Na esfera da religiosidade, o seu adoecimento é compreendido como uma herança de um castigo divino. O contato com a sociedade como aspecto caritativo não diminuiu o sentimento de excluído pelo preconceito e estigma que permeia o portador de hanseníase. Conclusão: Podemos inferir que, ao recontar sua vida, os sujeitos vivenciaram uma condição quase-experimental, rememorando histórias marcantes naquele contexto


Assuntos
Humanos , Masculino , Feminino , Efeitos Psicossociais da Doença , Hanseníase/história , Hanseníase/psicologia , Qualidade de Vida/psicologia , Estigma Social
20.
Psychol Assess ; 25(4): 1103-10, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23730826

RESUMO

Standard clinical significance classifications are based on movement between the "dysfunctional" and "functional" distributions; however, this dichotomy ignores heterogeneity within the "dysfunctional" population. Based on the methodology described by Tingey, Lambert, Burlingame, and Hansen (1996), the present study sought to present a 3-distribution clinical significance model for the 21-item version of the Depression Anxiety Stress Scales (DASS-21; P. F. Lovibond & Lovibond, 1995) using data from a normative sample (n = 2,914), an outpatient sample (n = 1,000), and an inpatient sample (n = 3,964). DASS-21 scores were collected at pre- and post-treatment for both clinical samples, and patients were classified into 1 of 5 categories based on whether they had made a reliable change and whether they had moved into a different functional range. Evidence supported the validity of the 3-distribution model for the DASS-21, since inpatients who were classified as making a clinically significant change showed lower symptom severity, higher perceived quality of life, and higher clinician-rated functioning than those who did not make a clinically significant change. Importantly, results suggest that the new category of recovering is an intermediate point between recovered and making no clinically significant change. Inpatients and outpatients have different treatment goals and therefore use of the concept of clinical significance needs to acknowledge differences in what constitutes a meaningful change.


Assuntos
Terapia Comportamental , Terapia Cognitivo-Comportamental , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Transtornos Mentais/terapia , Inventário de Personalidade/estatística & dados numéricos , Transtornos de Adaptação/diagnóstico , Transtornos de Adaptação/psicologia , Transtornos de Adaptação/terapia , Adolescente , Adulto , Idoso , Assistência Ambulatorial , Transtornos de Ansiedade/diagnóstico , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , Comparação Transcultural , Transtorno Depressivo/diagnóstico , Feminino , Hospitalização , Humanos , Masculino , Transtornos Mentais/diagnóstico , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Transtornos do Humor/diagnóstico , Transtornos do Humor/psicologia , Transtornos do Humor/terapia , Avaliação de Processos e Resultados em Cuidados de Saúde/estatística & dados numéricos , Transtornos da Personalidade/diagnóstico , Transtornos da Personalidade/psicologia , Transtornos da Personalidade/terapia , Psicometria , Psicoterapia de Grupo , Transtornos Psicóticos/diagnóstico , Transtornos Psicóticos/psicologia , Transtornos Psicóticos/terapia , Qualidade de Vida/psicologia , Valores de Referência , Reprodutibilidade dos Testes , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Transtornos Relacionados ao Uso de Substâncias/psicologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Estados Unidos , Austrália Ocidental , Adulto Jovem
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