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A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.
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Hanseníase , Esquizofrenia , Teoria Fundamentada , Humanos , Indonésia , Hanseníase/psicologia , Estigma SocialRESUMO
BACKGROUND: Referral and clinical decision-making support are important for reducing delays in reaching and receiving appropriate and quality care. This paper presents analysis of the use of a pilot referral and decision making support call center for mothers and newborns in the Greater Accra region of Ghana, and challenges encountered in implementing such an intervention. METHODS: We analyzed longitudinal time series data from routine records of the call center over the first 33 months of its operation in Excel. RESULTS: During the first seventeen months of operation, the Information Communication Technology (ICT) platform was provided by the private telecommunication network MTN. The focus of the referral system was on maternal and newborn care. In this first phase, a total of 372 calls were handled by the center. 93% of the calls were requests for referral assistance (87% obstetric and 6% neonatal). The most frequent clinical reasons for maternal referral were prolonged labor (25%), hypertensive diseases in pregnancy (17%) and post-partum hemorrhage (7%). Birth asphyxia (58%) was the most common reason for neonatal referral. Inadequate bed space in referral facilities resulted in only 81% of referrals securing beds. The national ambulance service was able to handle only 61% of the requests for assistance with transportation because of its resource challenges. Resources could only be mobilized for the recurrent cost of running the center for 12 h (8.00 pm - 8.00 am) daily. During the second phase of the intervention we switched the use of the ICT platform to a free government platform operated by the National Security. In the next sixteen-month period when the focus was expanded to include all clinical cases, 390 calls were received with 51% being for medical emergency referrals and 30% for obstetrics and gynaecology emergencies. Request for bed space was honoured in 69% of cases. CONCLUSIONS: The call center is a potentially useful and viable M-Health intervention to support referral and clinical decision making in the LMIC context of this study. However, health systems challenges such inadequacy of human resources, unavailability of referral beds, poor health infrastructure, lack of recurrent financing and emergency transportation need to be addressed for optimal functioning.
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Call Centers , Técnicas de Apoio para a Decisão , Necessidades e Demandas de Serviços de Saúde , Serviços de Saúde Materno-Infantil , Encaminhamento e Consulta , Feminino , Gana , Humanos , Recém-Nascido , Estudos Longitudinais , Projetos Piloto , GravidezRESUMO
INTRODUCTION: Job aids such as observation charts are commonly used to record inpatient nursing observations. For sick newborns, it is important to provide critical information, intervene, and tailor treatment to improve health outcomes, as countries work towards reducing neonatal mortality. However, inpatient vital sign readings are often poorly documented and little attention has been paid to the process of chart design as a method of improving care quality. Poorly designed charts do not meet user needs leading to increased mental effort, duplication, suboptimal documentation and fragmentation. We provide a detailed account of a process of designing a monitoring chart. METHODS: We used a Human-Centred Design (HCD) approach to co-design a newborn monitoring chart between March and May 2019 in three workshops attended by 16-21 participants each (nurses and doctors) drawn from 14 hospitals in Kenya. We used personas, user story mapping during the workshops and observed chart completion to identify challenges with current charts and design requirements. Two new charts were piloted in four hospitals between June 2019 and February 2020 and revised in a cyclical manner. RESULTS: Challenges were identified regarding the chart design and supply, and how staff used existing charts. Challenges to use included limited staffing, a knowledge deficit among junior staff, poor interprofessional communication, and lack of appropriate and working equipment. We identified a strong preference from participants for one chart to capture vital signs, assessment of the baby, and feed and fluid prescription and monitoring; data that were previously captured on several charts. DISCUSSION: Adopting a Human-Centred Design approach, we designed a new comprehensive newborn monitoring chart that is unlike observation charts in the literature that only focus on vital signs. While the new chart does not address all needs, we believe that once implemented, it can help build a clearer picture of the care given to newborns. CONCLUSION: The chart was co-designed and piloted with the user and context in mind resulting in a unique monitoring chart that can be adopted in similar settings.
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Hospitalização , Pacientes Internados , Hospitais , Humanos , Lactente , Recém-Nascido , Quênia , Monitorização FisiológicaRESUMO
BACKGROUND: Inpatient nursing documentation facilitates multi-disciplinary team care and tracking of patient progress. In both high- and low- and middle-income settings, it is largely paper-based and may be used as a template for electronic medical records. However, there is limited evidence on how they have been developed. OBJECTIVE: To synthesise evidence on how paper-based nursing records have been developed and implemented in inpatient settings to support documentation of nursing care. DESIGN: A scoping review guided by the Arksey and O'Malley framework and reported using PRISMA-ScR guidelines. ELIGIBILITY CRITERIA: We included studies that described the process of designing paper-based inpatient records and excluded those focussing on electronic records. Included studies were published in English up to October 2019. SOURCES OF EVIDENCE: PubMed, CINAHL, Web of Science and Cochrane supplemented by free-text searches on Google Scholar and snowballing the reference sections of included papers. RESULTS: 12 studies met the eligibility criteria. We extracted data on study characteristics, the development process and outcomes related to documentation of inpatient care. Studies reviewed followed a process of problem identification, literature review, chart (re)design, piloting, implementation and evaluation but varied in their execution of each step. All studies except one reported a positive change in inpatient documentation or the adoption of charts amid various challenges. CONCLUSIONS: The approaches used seemed to work for each of the studies but could be strengthened by following a systematic process. Human-centred Design provides a clear process that prioritises the healthcare professional's needs and their context to deliver a usable product. Problems with the chart could be addressed during the design phase rather than during implementation, thereby promoting chart ownership and uptake since users are involved throughout the design. This will translate to better documentation of inpatient care thus facilitating better patient tracking, improved team communication and better patient outcomes. RELEVANCE TO CLINICAL PRACTICE: Paper-based charts should be designed in a systematic and clear process that considers patient's and healthcare professional's needs contributing to improved uptake of charts and therefore better documentation.
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Documentação , Registros de Enfermagem , Adolescente , Adulto , Idoso , Austrália , Criança , Registros Eletrônicos de Saúde , Feminino , Hospitais , Humanos , Recém-Nascido , MasculinoRESUMO
BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.
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Diabetes Mellitus/psicologia , Infecções por HIV/psicologia , Hanseníase/psicologia , Psicologia do Esquizofrênico , Estigma Social , Adulto , Feminino , Humanos , Indonésia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores SocioeconômicosRESUMO
BACKGROUND: Worldwide, over half of the adolescent pregnancies recorded are unintended. The decision to continue the pregnancy to term or to opt for an abortion is a constant dilemma that is directly or indirectly influenced by stakeholders and also by the wider social environment. This study aimed at understanding the perceived decision-making preferences and determinants of early adolescent pregnancy in the Jamestown area of Accra in Ghana. METHODS: A vignette-based qualitative study design was used. Eight focus group discussions were carried among various purposively selected groups of participants: parents, teachers, adolescent students who had not been pregnant before, and adolescents who had had at least one pregnancy in the past. The vignette was a hypothetical case of a 15-year-old high school student who had not experienced her menses for the past 6 weeks. The data were analyzed using a thematic analysis approach. RESULTS: Lack of parent-daughter communication, the taboo on discussing sex-related issues in households and weak financial autonomy were considered to be the main contributing factors to the high early adolescent pregnancy rates in the community. Partner readiness to assume responsibility for the girl and the baby was a key consideration in either continuing the pregnancy to term or opting for an abortion. The father was overwhelmingly considered to be the one to take the final decision regarding the pregnancy outcome. Irrespective of the fact that the respondents were very religious, opting for an abortion was considered acceptable under special circumstances, especially if the pregnant adolescent was doing well in school. CONCLUSION: Inadequate and inappropriate communication practices around sexuality issues, as well as weak financial autonomy are the major predictors of early adolescent pregnancy in this community. The father is perceived to be the main decision maker regarding a young adolescent's pregnancy outcome. Policy-makers should carefully evaluate the implications of this overwhelming perceived desire for the father to be the final decision-maker regarding adolescent pregnancy outcomes in this community.
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Aborto Induzido/psicologia , Comportamento de Escolha , Tomada de Decisões , Gravidez na Adolescência/psicologia , Adolescente , Feminino , Gana , Humanos , Gravidez , Pesquisa Qualitativa , Fatores de RiscoRESUMO
Objectives: Because medical, midwifery and law students in Ghana constitute the next generation of health care and legal practitioners, this study aimed to evaluate their attitudes towards abortion and their perceptions of the decision-making capacity of pregnant adolescents.Methods: We conducted a cross-sectional survey among 340 medical, midwifery and law students. A pretested and validated questionnaire was used to collect relevant data on respondents' sociodemographic characteristics, attitudes towards abortion and the perceived capacity and rationality of pregnant adolescents' decisions. The χ2 test of independency and Fischer's exact test were used where appropriate.Results: We retained 331 completed questionnaires for analysis. Respondents' mean age was 21.0 ± 2.9 years and the majority (95.5%) were of the Christian faith. Women made up 77.9% (n = 258) of the sample. Most students (70.1%) were strongly in favour of abortion if it was for health reasons. More than three-quarters (78.0%) of the students strongly disagreed on the use of abortion for the purposes of sex selection. Most respondents (89.0%) were not in favour of legislation to make abortion available on request for pregnant adolescents, with medical students expressing a more negative attitude compared with law and midwifery students (p < 0.001). Over half of the midwifery students (52.6%) believed that adolescents should have full decision-making capacity regarding their pregnancy outcome, compared with law and medical students (p < 0.001).Conclusion: Tensions between adolescent reproductive autonomy, the accepted culture of third party involvement (parents and partners), and the current abortion law may require keen reflection if an improvement in access to safe abortion services is envisioned.
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Aborto Induzido/psicologia , Tomada de Decisões , Gravidez na Adolescência , Estudantes/psicologia , Adolescente , Direito Penal/educação , Estudos Transversais , Feminino , Gana , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Tocologia/educação , Gravidez , Fatores Socioeconômicos , Estudantes de Medicina/psicologia , Adulto JovemRESUMO
Over forty percent of pregnancies worldwide are unintended, with a quarter of these from Africa. There is a growing body of evidence regarding the adverse health, economic, societal, and developmental consequences of unintended pregnancies. The main aim of this systematic review is to report on the current prevalence and determinants of unintended pregnancies in sub-Saharan Africa. A literature search (in PubMed, Embase, PsycINFO and Scopus) was performed up to 29 May 2019. The Joanna Briggs Institute Reviewers' Manual guidelines to assess the quality of peer-reviewed quantitative articles were used to select articles that met our inclusion criteria. A total of 29 articles from 9 countries were included in the final review. The mean unintended pregnancy rate was 33.9%. The mean unwanted pregnancy rate was 11.2%, while the mean mistimed pregnancy rate was 22.1%. Mistimed pregnancies were more frequent across the 13 studies that classified unintended pregnancies into the unwanted and mistimed pregnancy sub-groups. Being an adolescent (19 years old or less), single, and having 5 children or more were consistent risk factors for unintended pregnancy. Awareness and use of modern contraception, level of education, socio-economic status, religion, and area of residence as independent variables were either protective or associated with an increased risk of reporting a pregnancy as being unintended. The unintended pregnancy rate in sub-Saharan Africa remains high, especially among singles, adolescents, and women with 5 or more children. There was no uniform tool used across studies to capture pregnancy intention. The studies did not capture pregnancy intention among women whose pregnancies ended up as stillbirths or abortions. More research is required to ascertain when it is best to capture pregnancy intention, and how exclusion or inclusion of pregnancies ending up as stillbirths or abortions impact reported unintended pregnancy rates.
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Gravidez não Planejada , Gravidez não Desejada , Adolescente , Adulto , África Subsaariana , Comportamento Contraceptivo , Escolaridade , Feminino , Humanos , Gravidez , Prevalência , Características de Residência , Classe Social , Adulto JovemRESUMO
BACKGROUND: Quality antenatal care (ANC) is recognised as an opportunity for screening and early identification of pregnancy-related complications. In rural Ghana, challenges with access to diagnostic services demotivate women from ANC attendance and referral compliance, leading to absent or late identification and management of high-risk women. In 2016, an integrated diagnostic and clinical decision support system tagged 'Bliss4Midwives' (B4M), was piloted in Northern Ghana. The device facilitated non-invasive screening of pre-eclampsia, gestational diabetes and anaemia at the point-of-care. This study aimed to explore the experiences of pregnant women with B4M, and its influence on service utilisation ("pull effect") and woman-provider relationships ("woman engagement"). METHODS: Through an embedded study design, qualitative methods including individual semi-structured interviews and non-participant observation were employed. Interviews were conducted with 20 pregnant women and 10 health workers, supplemented by ANC observations in intervention facilities. Secondary data on ANC registrations over a one-year period were extracted from health facility records to support findings on the perceived influence of B4M on service utilisation. RESULTS: Women's first impressions of the device were mostly emotive (excitement, fear), but sometimes neutral. Although it is inconclusive whether B4M increased ANC registration, pregnant women generally valued the availability of diagnostic services at the point-of-care. Additionally, by fostering some level of engagement, the intervention made women feel listened to and cared for. Process outcomes of the B4M encounter also showed that it was perceived as improving the skills and knowledge of the health worker, which facilitated trust in diagnostic recommendations and was therefore believed to motivate referral compliance. CONCLUSIONS: This study suggests that mHealth diagnostic and decision support devices enhance woman engagement and trust in health workers skills. There is need for further inquiry into how these interventions influence maternal health service utilization and women's expectations of pregnancy care.
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Participação do Paciente/psicologia , Sistemas Automatizados de Assistência Junto ao Leito , Gestantes/psicologia , Cuidado Pré-Natal/psicologia , Telemedicina/métodos , Adulto , Técnicas de Apoio para a Decisão , Feminino , Gana , Humanos , Gravidez , Cuidado Pré-Natal/métodos , Pesquisa Qualitativa , Confiança/psicologia , Adulto JovemRESUMO
Objectives: People affected by leprosy are often stigmatised, but stigma is rarely quantified and the effectiveness of interventions is often not evaluated. The SARI Project aimed to test and evaluate three interventions: counselling (involving peer counsellors), socio-economic development (SED) and contact between community members and affected people. Results: This study used a controlled trial design in which pairs of the stigma-reduction interventions were randomly allocated to sub-districts in Cirebon District,Indonesia. The study sample consisted of one cohort of people affected by leprosy (on treatment or treated) and two independent samples of community members. The latter were selected through purposive sampling. Three scales (e.g. SARI Stigma Scale, Participation scale) were applied among leprosy-affected people and two scales (e.g. Social Distance Scale) were used among community members pre- and post-intervention. Among affected people (n=237), significant differences in reduction of stigma and participation restrictions were found in all intervention areas and an improvement in quality of life in some intervention areas. Social distance and social stigma significantly reduced among community members (n=213 and 375) in the two intervention areas where the contact intervention was implemented. Two of the five instruments indicated changes in the control area, but the changes in the intervention areas were much larger. Conclusion: The SARI Project has demonstrated that a measurable reduction in leprosy-related stigma can be achieved, both at community level and among people affected by leprosy, using reproducible interventions that can be adapted to different settings and target groups.
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Hanseníase/economia , Hanseníase/psicologia , Adulto , Aconselhamento , Desenvolvimento Econômico , Feminino , Humanos , Indonésia , Masculino , Pessoa de Meia-Idade , Grupo Associado , Qualidade de Vida , Estigma Social , Adulto JovemRESUMO
OBJECTIVE: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives. METHODS: The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients. RESULTS: In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection. CONCLUSION: Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.
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Aconselhamento , Hanseníase/psicologia , Estigma Social , Adolescente , Adulto , Aconselhamento/economia , Pessoas com Deficiência/psicologia , Feminino , Humanos , Indonésia , Hanseníase/economia , Masculino , Pessoa de Meia-Idade , Grupo Associado , Adulto JovemRESUMO
Psychiatric rehabilitation supports individuals with mental disorders to acquire the skills needed for independent lives in communities. This article assesses the potential of outsourcing psychiatric rehabilitation by analysing care farm services in the Netherlands. Service characteristics were analysed across 214 care farms retrieved from a national database. Qualitative insights were provided by five case descriptions, selected from 34 interviews. Institutional care farms were significantly larger and older than private care farms (comprising 88.8% of all care farms). Private, independent care farms provide real-life work conditions to users who are relatively less impaired. Private, contracted care farms tailor the work activities to their capacities and employ professional supervisors. Institutional care farms accommodate for the most vulnerable users. We conclude that collaborations with independent, contracted and institutional care farms would provide mental health care organizations with a diversity in services, enhanced community integration and a better match with users' rehabilitation needs.
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Agricultura , Relações Comunidade-Instituição , Transtornos Mentais/reabilitação , Serviços de Saúde Mental , Reabilitação Vocacional/métodos , Bases de Dados Factuais , Humanos , Entrevistas como Assunto , Modelos Logísticos , Países Baixos , Serviços Terceirizados , Setor PrivadoRESUMO
OBJECTIVE: The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. INTRODUCTION: Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. INCLUSION CRITERIA: This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. METHODS: The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. RESULTS: The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient's perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. CONCLUSIONS: The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO Registration number: CRD42021243223.
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Hanseníase , Qualidade de Vida , Adaptação Psicológica , Pessoal de Saúde , Humanos , Hanseníase/tratamento farmacológico , Pesquisa QualitativaRESUMO
Documenting inpatient care is largely paper-based and it facilitates team communication and future care planning. However, studies show that nursing documentation remains suboptimal especially for newborns, necessitating introduction of standardised paper-based charts. We report on a process of implementing a comprehensive newborn monitoring chart and the perceptions of health workers in a network of hospitals in Kenya. The chart was launched virtually in July 2020 followed by learning meetings with nurses and the research team. This is a qualitative study involving document review, individual in-depth interviews with nurses and paediatricians and a focus group discussion with data clerks. The chart was co-designed by the research team and hospital staff then implemented using a trainer of trainers' model where the nurses-in-charge were trained on how to use the chart and they in turn trained their staff. Training at the hospital was delivered by the nurse-in-charge and/or paediatrician through a combined training with all staff or one-on-one training. The chart was well received with health workers reporting reduced writing, consolidated information, and improved communication as benefits. Implementation was facilitated by individual and team factors, complementary projects, and the removal of old charts. However, challenges arose related to the staff and work environment, inadequate supply of charts, alternative places to document, and inadequate equipment. The participants suggested that future implementation should be accompanied by mentorship or close follow-up, peer experience sharing, training at the hospital and in pre-service institutions and wider stakeholder engagement. Findings show that there are opportunities to improve the implementation process by clarifying roles relating to the filing system, improving the chart supply process, staff induction and specifying a newborn patient file. The chart did not meet the need for supporting documentation of long stay patients presenting an opportunity to explore digital solutions that might provide more flexibility and features.
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BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.
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Eritema Nodoso , Hanseníase , Eritema Nodoso/epidemiologia , Família/psicologia , Humanos , Hanseníase/epidemiologia , Pesquisa Qualitativa , Estigma SocialRESUMO
ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.
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Infecções por HIV , Hanseníase , Grupos Focais , Humanos , Indonésia , Estigma Social , Inquéritos e QuestionáriosRESUMO
This systematic review examines and consolidates existing evidence on stigma associated with the top four non-communicable diseases (NCDs)-cancers, cardiovascular diseases, chronic respiratory diseases, and diabetes-and its impact on the lives of people affected. We conducted a systematic literature search in PubMed, PsycINFO, JSTOR, Science Direct, and Web of Science for original research in English that explored health-related stigma among people living with either of the four NCDs. A three-step integrative synthesis of data was conducted. Twenty-six articles (qualitative = 15; quantitative = 11) were selected, with most (n = 15) related to cancers, followed by diabetes (n = 7), chronic respiratory diseases (n = 3), and cardiovascular diseases (n = 1). Blame, shame, and fear were the main causes of stigma, the origin and nature of which differed according to the disease-specific features. The manifestations (enacted and felt stigma) and consequences (social, behavioral, psychological, and medical) of stigma across NCDs were similar. Inconsistencies existed in the conceptualization of stigma processes. To fill this gap, we developed an NCD-related stigma framework. People living with NCDs can experience stigma, which can negatively impact their health, management of their disease, and quality of life. The new framework can help in improving the understanding of the processes and experiences of stigma related to NCDs.
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Doenças não Transmissíveis/psicologia , Qualidade de Vida/psicologia , Estigma Social , Diabetes Mellitus/epidemiologia , Humanos , VergonhaRESUMO
Background: Health care in Vietnam is challenged by a high burden of hypertension (HTN). Since 2000, several interventions were implemented to manage HTN; it is not clear what is the status of patient access to HTN care. Objective: This article aims to perform a systematic narrative review of the available evidence on access to HTN care and services in primary health-care settings in Vietnam. Methods: Search engines were used to identify relevant records of scientific and grey literature. Data from selected articles were analysed using standardised spreadsheets and MaxQDA and following a framework synthesis methodology. Results: There has been increasing interest in research and policy concerning the burden of HTN in Vietnam, covering many aspects of access to treatment at the primary health-care level. Vietnam's National HTN Programme is managed as a vertical programme and its services integrated into the network of primary health-care facilities across the public sector in selected provinces. The Programme financed population-wide screening campaigns for the early detection of HTN among people above 40 years of age. There was no information on the acceptability of HTN health services, especially regarding the interaction between patients and health professionals. In general, articles reported good availability of medication, but problems in accessing them included: fragmentation and lack of consistency in prescribing medication between different levels and short timespans for dispensing medication at primary health-care facilities. There was limited information related to the cost and economic impact of HTN treatment. Treatment adherence among hypertensive patients based on four studies did not exceed 70%. Conclusions: Although the Vietnamese health-care system has taken steps to accommodate some of the needs of HTN patients, it is crucial to scale-up interventions that allow for regular, systematic, and integrated care, especially at the lowest levels of care.
Assuntos
Atenção à Saúde/organização & administração , Promoção da Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/organização & administração , Hipertensão/terapia , Atenção Primária à Saúde/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , VietnãRESUMO
BACKGROUND: Antenatal screening is useful for early identification and management of high-risk pregnancies. In low-resource settings, provision of the full complement of tests is limited and diagnostic referrals incure additional costs for pregnant women. We assessed the viability of Bliss4Midwives (B4M) - a point-of-care diagnostic decision support device for decentralized screening of pre-eclampsia, gestational diabetes and anaemia during antenatal care (ANC). METHODS: The device was piloted in seven health facilities across two districts in Northern Ghana over a ten-month period. Health workers were expected to screen women at each ANC visit till delivery. All screening records from the device were automatically archived digitally and later downloaded. After removing duplicates or invalid entries, descriptive quantitative analysis was carried out with IBM SPSS Statistics (version 23). B4M usage behavior, diagnostic and referral outcome were analyzed. RESULTS: Health workers conducted 1323 partial or full antenatal screening on 940 women, resulting in decision support for 835 (88.8%) B4M beneficiaries. Diagnostic referral was eliminated for 708 (84.7%) beneficiaries, with 335 (40.1%) of these from facilities without on-site diagnostic alternatives. Of visits with complete data, 92/559 (16.4%) women were screened in their first trimester, 28/940 (2.9%) had 4+ B4M visits and 107/835 (12.8%) women were recommended for urgent referral to a higher-level facility on the first visit. Follow-up screenings flagged an additional 17 women for urgent referral with 10 cases of repeated alerts in five women. Wide variations between high (9 months use) and low adopting (1.5 months use) facilities were observed, with some similarities in usage trend. CONCLUSIONS: B4M helped decentralize ANC screening and decrease unnecessary referrals. Project outcomes were influenced by implementation strategy, technical features and behavioural dispositions of users and beneficiaries.
Assuntos
Técnicas de Apoio para a Decisão , Programas de Rastreamento/métodos , Cuidado Pré-Natal , Serviços de Saúde Rural , Adolescente , Adulto , Feminino , Gana , Humanos , Projetos Piloto , Gravidez , Reprodutibilidade dos Testes , Medição de RiscoRESUMO
[This corrects the article DOI: 10.1371/journal.pone.0221789.].