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OBJECTIVES: Despite increasing emphasis on the inclusion of patient input in health technology assessment (HTA) in Europe in particular, questions remain as to the integration of patient insight alongside other HTA inputs. This paper aims to explore how HTA processes, while ensuring the scientific quality of assessments, "make do" with patient knowledge elicited through patients' involvement mechanisms. METHODS: The qualitative study analyzed institutional HTA and patient involvement in four European country contexts. We combined documentary analysis with interviews with HTA professionals, patient organizations, and health technology industry representatives, complemented with observational findings made during a research stay at an HTA agency. RESULTS: We present three vignettes which showcase how different parameters of assessment become reframed upon the positioning of patient knowledge alongside other forms of evidence and expertise. Each vignette explores patients' involvement during an assessment of a different type of technology and at a different stage of the HTA process. First, cost-effectiveness considerations were reframed during an appraisal of a rare disease medicine based on patient and clinician input regarding its treatment pathway; in the second vignette reframing amounted to what counts as a meaningful outcome measure for a glucose monitoring device; in the third, evaluating pediatric transplantation services involved reframing an option's appropriateness from a question of moral to one of legal acceptability. CONCLUSIONS: Making do with patient knowledge in HTA involves reframing of what is being assessed. Conceptualizing patients' involvement in this way helps us to consider the inclusion of patient knowledge not as complementary to, but as something that can transform the assessment process.
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Automonitorização da Glicemia , Avaliação da Tecnologia Biomédica , Criança , Humanos , Glicemia , Participação do Paciente , Pesquisa QualitativaRESUMO
BACKGROUND: Adequate detection of symptoms and disease progression in behavioural variant frontotemporal dementia (bvFTD) is complex. Dementia cohorts usually utilize cognitive and functional measures, which fail to detect dominant behavioural and social cognitive deficits in bvFTD. Moreover, since patients typically have a loss of insight, caregivers are important informants. This is the first qualitative study to investigate caregiver relevant symptoms during the disease course of bvFTD, aiming to improve tools for diagnosis, progression, and future clinical trials. METHODS: Informal caregivers of patients in different disease stages of bvFTD (N = 20) were recruited from the neurology outpatient clinic of the Amsterdam UMC and a patient organization for peer support in the Netherlands. Their perspectives on clinical relevance were thoroughly explored during individual semi-structured interviews. Inductive content analysis with open coding was performed by two researchers independently to establish overarching themes and patterns. RESULTS: Caregivers reported a variety of symptoms, in which (i) loss of emotional connection, (ii) preoccupation and restlessness, and (iii) apathy and dependency compose major themes of relevance for diagnosis and treatment. Within heterogeneous disease trajectories, symptom presence differed between stages and among individuals, which is relevant in the context of progression and outcome measures. Significant socio-emotional changes dominated in early stages, while severe cognitive, behavioural, and physical deterioration shifted focus from predominant personality change to quality of life in later stages. CONCLUSIONS: Caregiver perspectives on target symptoms in bvFTD differ according to clinical stage and patient-caregiver characteristics, with significant socio-emotional changes characterizing early stages. These findings call for more appropriate tools and symptomatic treatments, as well as a personalized approach in treatment of bvFTD and a focus on early stage interventions in clinical trial design.
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Cuidadores , Demência Frontotemporal , Humanos , Cuidadores/psicologia , Gerenciamento Clínico , Demência Frontotemporal/psicologia , Demência Frontotemporal/terapia , Ensaios Clínicos como Assunto , Projetos de PesquisaRESUMO
BACKGROUND: Greenland struggles with a high prevalence of smoking, alcohol and drug abuse. In response to the increasing need for preventive initiatives, the first public health program Inuuneritta was introduced in 2007. Internationally, frameworks focus primarily on the implementation of a single, well-described intervention or program. However, with the increasing need and emergence of more holistic, integrated approaches, a need for research investigating the process of policy implementation from launch to action arises. This paper aims to augment the empirical evidence on the implementation of integrated health promotion programs within a governmental setting using the case of Inuuneritta II. In this study, the constraining and enabling determinants of the implementation processes within and across levels and sectors were examined. METHODS: Qualitative methods with a transdisciplinary approach were applied. Data collection consisted of six phases with different qualitative methods applied to gain a comprehensive overview and understanding of Inuuneritta II's implementation process. These methods included: observations and focus group discussions at the community health worker (CHW) conference, telephone interviews, document analysis, and a workshop on results dissemination. RESULTS: Enabling determinants influencing the implementation process of Inuuneritta II positively were high motivation among adopters, local prevention committees supporting community health workers, and the initiation of the central prevention committee. In contrast, constraining determinants were ambiguous program aims, high turnovers, siloed budgets and work environments, and an inconsistent and neglected central prevention committee. CONCLUSION: Inuuneritta II provided a substantial framework for an integrated health policy approach. However, having a holistic and comprehensive program enabling an integrated approach is not sufficient. Inuuneritta II's integrated approach does not harmonise with the government's inflexible organisational structure resulting in insufficient implementation.
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Promoção da Saúde/organização & administração , Desenvolvimento de Programas , Saúde Pública/métodos , Agentes Comunitários de Saúde , Grupos Focais , Groenlândia , Política de Saúde , Humanos , Pesquisa QualitativaRESUMO
Purpose Work participation after breast cancer treatment is generally negatively affected. Occupational health professionals might improve work-related outcomes by bridging the gap between sick-listed employees' levels of functioning and work demands. To aid them in this task, this review explored the association between functional impairments and work-related outcomes in breast cancer survivors. Methods Publications from January 2000-March 2016 were identified through five online databases (i.e. Pubmed, EMBASE, PsycINFO, CINAHL and the Cochrane Library). Quantitative and qualitative studies were included if they focused on functional impairments and work-related outcomes in breast cancer survivors. Two reviewers independently selected studies, extracted data and performed quality assessment. Results The search identified 998 studies, of which 20 studies met eligibility criteria. Impairments in physical functioning negatively affected return to work (RTW) and work ability in quantitative and qualitative studies. Studies measuring cognitive functioning with tests found no association with work-related outcomes, whereas the results of studies using self-reported measures were ambiguous. Social functioning was less commonly investigated and findings differed across work-related outcomes. Emotional functioning was not associated with work-related outcomes in quantitative studies, while in qualitative studies feelings such as insecurity were described as influencing RTW. Conclusions Functional impairments can severely hamper work participation in breast cancer survivors. This provides important opportunities for occupational health professionals to enhance RTW in breast cancer survivors, such as adequately addressing illness perceptions and work expectations. Ongoing research is warranted to aid occupational health professionals in providing effective vocational guidance and improve work-related outcomes in breast cancer survivors.
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Neoplasias da Mama/fisiopatologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Retorno ao Trabalho , Atenção , Cognição , Emoções , Feminino , Humanos , Remoção , Participação Social , Caminhada , Avaliação da Capacidade de TrabalhoRESUMO
BACKGROUND: Over the past six decades, the concept of patient-centred care (PCC) has been discussed in health research, policy and practice. However, research on PCC from a patients' perspective is sparse and particularly absent in outpatient psychiatric services. AIM: to gain insight into what patients with bipolar disorder and ADHD consider "good care" and what this implies for the conceptualisation of PCC. METHOD: A literature review on the different conceptualisations of PCC was complemented with qualitative explorative research on the experiences and needs of adults with ADHD and with bipolar disorder with mental healthcare in the Netherlands using focus group discussions and interviews. RESULTS: The elements addressed in literature are clustered into four dimensions: "patient", "health professional", "patient-professional interaction" and "healthcare organisation". What is considered "good care" by patients coincided with the four dimensions of PCC found in literature and provided refinement of, and preferred emphasis within, the dimensions of PCC. CONCLUSIONS: This study shows the value of including patients' perspectives in the conceptualisation of PCC, adding elements, such as "professionals listen without judgment", "professionals (re)act on the fluctuating course of the disorder and changing needs of patients" and "patients are seen as persons with positive sides and strengths".
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Transtorno do Deficit de Atenção com Hiperatividade/terapia , Atitude do Pessoal de Saúde , Transtorno Bipolar/terapia , Serviços de Saúde Mental/organização & administração , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Adulto , Idoso , Feminino , Humanos , Masculino , Serviços de Saúde Mental/normas , Pessoa de Meia-Idade , Pacientes Ambulatoriais/psicologia , Participação do Paciente , Assistência Centrada no Paciente/normas , Relações Médico-PacienteRESUMO
This study aimed to address gaps in understanding of the lived experiences of caregivers of persons with mental illness in low-income countries. It was conducted among caregivers of persons with mental illness making use of a free non-governmental clinic in and around Chennai, India. The study adopted a qualitative methodology, with semi-structured interviews and life history exercises (n = 29) and six focus group discussions with caregivers (n = 21) and mental health professionals and community-based workers (n = 39). The experiences of caregivers were analyzed in the framework of "The Banyan model of caregiving," which identifies six phases. Major themes in caregivers' experience were: embarrassment and losing honor; fear; awareness; stigma and social exclusion; and reduced social interaction and loneliness. Posttraumatic growth considered as the result of caregiver experiences was found to consist mainly of personal growth and focusing on positive life experiences. Lost opportunities particular to the context of Tamil Nadu were described as the inability to get married, obtaining less education than desired, and loss of employment. Siblings faced lower levels of burden, while elderly mothers experienced especially high levels of burden and lack of happiness in life. Caregiver gains were identified as greater compassion for other people with disabilities, resulting in a desire to help others, as well as increased personal strength and confidence. Understanding the nuances of the caregiving experiences over time can provide a framework to devise more fine-tuned support structures that aim to prevent reductions in social interaction and lost opportunities, and improve a sense of meaning, in order to assist caregivers to continue providing care for their relatives with mental illness in a context with scarce mental health resources.
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Cuidadores , Transtornos Mentais , Feminino , Humanos , Idoso , Cuidadores/psicologia , Índia , Transtornos Mentais/psicologia , Estigma Social , Saúde Mental , Pesquisa QualitativaRESUMO
BACKGROUND: Shared decision-making (SDM) is considered the "final stage" that completes the implementation of evidence-based medicine. Yet, it is also considered the most neglected stage. SDM shifts the epistemological authority of medical knowledge to one that deliberately includes patients' values and preferences. Although this redefines the work of the clinical encounter, it remains unclear what a shared decision is and how it is practiced. AIM: The aim of this paper is to describe how healthcare professionals manoeuvre the nuances of decision-making that shape SDM. We identify barriers to SDM and collect strategies to help healthcare professionals think beyond existing solution pathways and overcome barriers to SDM. METHODS: Semi-structured interviews were conducted with 68 healthcare professionals from psychiatry, internal medicine, intensive care medicine, obstetrics and orthopaedics and 15 patients. RESULTS: This study found that healthcare professionals conceptualize SDM in different ways, which indicates a lack of consensus about its meaning. We identified five barriers that limit manoeuvring space for SDM and contest the feasibility of a uniform, normative SDM model. Three identified barriers: (a) "not all patients want new role," (b) "not all patients can adopt new role," and (c) "attitude," were linked to strategies focused on the knowledge, skills and attitudes of individual healthcare professionals. However, systemic barriers: (d) "prioritization of medical issues" and (e) "lack of time" render such individual-focused strategies insufficient. CONCLUSION: There is a need for a more nuanced understanding of SDM as a "graded" framework that allows for flexibility in decision-making styles to accommodate patient's unique preferences and needs and to expand the manoeuvring space for decision-making. The strategies in this study show how our understanding of SDM as a process of multi-dyadic interactions that spatially exceed the consulting room offers new avenues to make SDM workable in contemporary medicine.
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Obstetrícia , Participação do Paciente , Atitude do Pessoal de Saúde , Tomada de Decisões , Tomada de Decisão Compartilhada , Feminino , Pessoal de Saúde , Humanos , GravidezRESUMO
Much attention in health technology assessment (HTA), a health system governance mechanism used for determining the value of health technologies, is being paid to improving the quality and patient-relevance of the evidence used in assessment pratices. Whilst the direct involvement of patient actors throughout HTA processes has become a more routine element of institutional practice, the 'impacts' of patient engagement (PE) initiatives have proven difficult to determine and enhance. In reflexive governance theories, reflexive learning is a critical mechanism of multi-stakeholder arrangements that better handles the complexities of technologies and how they are understood through governance practices. This paper explores how reflexive learning can be used to build a richer conceptualisation of PE in HTA, in order to generate suggestions for enhancing PE practices and their impact. We critically apply reflexive learning insights on qualitative data derived from the co-creation process of a PE evaluation framework, organised through an EU project focused on strengthening PE practices across medicines development (2018-2020), including 24 interactive case studies, 3 multi-stakeholder workshops, and our observations throughout the project. The findings characterise two dimensions of reflexive learning in PE: First, reflexive learning refers to the adaptive reorganisation of evidence generating practices, including the revision of medicines' evaluation criteria and the conditions under which evidence 'relevant' to HTA is constructed. Second, reflexive learning spotlights the sociopolitics which shape technology evaluation. Four themes affecting meaningful and sustained PE in medicines development were analysed: institutional boundaries due to established evaluation criteria; timing of engagements; network relations between institutional actors; and the politics of patient representation. Extending beyond discrete PE activities and their reported impacts, reflexive forms of learning are crucial to yielding more 'meaningful' PE for HTA and medicines development, facilitating a HTA practice that more meaningfully deals with the complexities of medicines evidence generation.
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Participação do Paciente , Avaliação da Tecnologia Biomédica , Tecnologia Biomédica , Humanos , Política , Projetos de PesquisaRESUMO
Transdisciplinary research and innovation (R&I) efforts have emerged as a means to address challenges to sustainable transformation. One of the main elements of transdisciplinary efforts is the 'inclusion' of different stakeholders, values and perspectives in participatory R&I processes. In practice, however, 'doing inclusion' raises a number of challenges. In this article, we aim to contribute to re-politicizing inclusion in transdisciplinarity for transformation, by (1) empirically unraveling four key challenges that emerge in the political practice of 'doing inclusion', (2) illustrating how facilitators of inclusion processes perform balancing acts when confronted with these challenges, and (3) reflecting on what the unfolding dynamics suggests about the politics of stakeholder inclusion for societal transformation. In doing so, we analyze the transdisciplinary FIT4FOOD2030 project (2017-2020)-an EU-funded project that aimed to contribute to fostering EU R&I systems' ability to catalyze food system transformation through stakeholder engagement in 25 Living Labs. Based on 3 years of action-research (including interviews, workshops and field observations), we identified four inherent political challenges to 'doing inclusion' in FIT4FOOD2030: (1) the challenge to meaningfully bring together powerful and marginalized stakeholders; (2) combining representation and deliberation of different stakeholder groups; (3) balancing diversities of inclusion with directionalities implied by transformative efforts; and (4) navigating the complexities of establishing boundaries of inclusion processes. We argue that by understanding 'doing inclusion' as a political practice, necessitating specificity about the (normative) ambitions in different inclusion settings, facilitators may better grasp and address challenges in transdisciplinarity for transformation.
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Purpose: To explore barriers and pathways to the inclusion of persons with mental and intellectual disabilities in technical and vocational education and training programmes in four East African countries, in order to pave the way to greater inclusion.Materials and methods: An explorative, qualitative study including 10 in-depth interviews and a group discussion was conducted with coordinators of different programmes in four East African countries. Two independent researchers coded the interviews inductively using Atlas.ti. The underlying framework used is the culture, structure, and practice model.Results: Barriers and pathways to inclusion were found in the three interrelated components of the model. They are mutually reinforcing and are thus not independent of one another. Barriers regarding culture include negative attitudes towards persons with mental illnesses, structural barriers relate to exclusion from primary school, rigid curricula and untrained teachers and unclear policies. Culture and structure hence severely hinder a practice of including persons with mental disabilities in technical and vocational education and training programmes. Pathways suggested are aiming for a clearer policy, more flexible curricula, improved teacher training and more inclusive attitudes.Conclusions: In order to overcome the identified complex barriers, systemic changes are necessary. Suggested pathways for programme coordinators serve as a starting point.Implications for rehabilitationClear and up-to-date information on mental disability is required to engender societal participation; especially that of stakeholders in technical and vocational education and training programmes.Affirmative action and policy implementations of national and international human rights legislations are required to address the challenges of enrolment in technical and vocational education and training programmes.Disability organisations and government should adopt a more open and strengths-based attitude, tailor-made curricula, specific teacher training as well as clearer policies to ensure better inclusion of persons with mental disabilities in technical and vocational education and training programmes.
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Pessoas com Deficiência , Deficiência Intelectual , Pessoas com Deficiência Mental , Educação Vocacional , África Oriental , HumanosRESUMO
Purpose: In Kenya, the employment rate for persons with disabilities is about 1% compared to 73.8% for the general population, and the situation is even worse for persons with mental disabilities. Persons with mental disabilities are often regarded as "mad", and stand little or no chance of employment. We undertook an exploratory study with employers and potential employers to understand factors that hinder or facilitate their employment and to gain insight into employers' perceptions of mental disability.Materials and methods: We adopted a mixed method study design, including in-depth interviews (n = 10) and questionnaires (n = 158) with (potential) employers in Kenya to explore the barriers and facilitators of employment for persons with mental disabilities.Results: Out of the 158 employers who completed the questionnaire, only 15.4% had ever employed persons with mental disabilities. The perceptions that these persons are not productive and may be violent was associated with an unwillingness to employ them (OR: 10.11, 95%CI: 2.87-35.59 and OR: 3.6, 95%CI: 1.34-9.64, respectively). The possession of skills was the highest reported facilitator of employing persons with mental disabilities. Employers suggested that information about mental illness and the disclosure by prospective employees with mental disabilities are relevant for the provision of reasonable accommodation in the workplace.Conclusion: Possession of skills and disclosure by persons with mental disabilities could improve their employability. Information targeted at all actors including employers, employees, government, and policymakers is necessary for balancing employers and employees expectations.Implications for rehabilitationDisabled persons' organisations or mental disability programs that seek to improve the employment of persons with mental disabilities should incorporate methods that address employer expectations through dialogue to find mutual benefits.Employers require essential information about mental illness, and guidance and support in order to provide reasonable accommodation in the workplace for persons with mental disabilities.Disabled persons' organisations and inclusive employment programs should share the positive experiences of employers of persons with mental disabilities with employers who are unaware of the work abilities of persons with mental disabilities to stimulate adoption of inclusive practices.
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Emprego , Deficiência Intelectual , Pessoas com Deficiência Mental , Local de Trabalho , Emprego/organização & administração , Emprego/psicologia , Emprego/normas , Humanos , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/reabilitação , Quênia/epidemiologia , Motivação , Pessoas com Deficiência Mental/reabilitação , Pessoas com Deficiência Mental/estatística & dados numéricos , Estudos Prospectivos , Inquéritos e Questionários , Desempenho Profissional , Local de Trabalho/organização & administração , Local de Trabalho/normasRESUMO
BACKGROUND: Mental disorders affect employment and the ability to work, and mental healthcare providers are important in the promotion of health and employment for affected individuals. The objective of this study is to explore the perspectives of mental healthcare providers on pathways to improved employment for persons with mental disorders in two lower middle-income countries. METHODS: Our study participants included mental healthcare providers (psychiatrists, occupational physicians, psychologists, and social care workers) from Kenya and Nigeria. Qualitative interviews and a focus group discussion were conducted with 15 professionals in Kenya and online questionnaires were completed by 80 professionals from Nigeria. RESULTS: The study participants suggested that work is important for the recovery and wellbeing of persons with mental disorders. A complex interplay of factors related to the health of persons with mental disorders and the socioeconomic system in their setting were identified as barriers to their work ability and employment. Participants proposed four pathways to improved employment: including information on reducing stigma, better healthcare, policy advocacy in employment, and government commitment to healthcare and social welfare. Public education to reduce stigma and better healthcare were the highest reported facilitators of employment. CONCLUSIONS: Persons with mental disorders require multilevel support and care in obtaining and retaining employment. A better mental healthcare system is essential for the employment of persons with mental disorders.
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Collaborative approaches in health, such as One Health (OH), are promising; nevertheless, several authors point at persistent challenges for designing and implementing OH initiatives. Among other challenges, OH practitioners struggle in their efforts to collaborate across disciplines and domains. This paper aims to provide insights into the existing challenges for designing and implementing OH initiatives, their causes and solutions, and points out strategic solutions with the potential to solve practical challenges. A systematic literature search was performed for emerging challenges and proposed solutions in the process of conducting OH initiatives. Next, a thematic and a causal analysis were performed to unravel challenges and their causes. Finally, solutions were discriminated on whether they were only recommended, or implemented as a proof-of-principle. The 56 included papers describe 21 challenges endured by OH initiatives that relate to different themes (policy and funding; education and training; surveillance; multi-actor, multi-domain, and multi-level collaborations; and evidence). These challenges occur in three different phases: the acquisition of sufficient conditions to start an initiative, its execution, and its monitoring and evaluation. The findings indicate that individual challenges share overlapping causes and crosscutting causal relations. Accordingly, solutions for the successful performance of OH initiatives should be implemented to tackle simultaneously different types of challenges occurring in different phases. Still, promoting collaboration between the wide diversity of stakeholders, as a fundamental aspect in the OH approach, is still by far the most challenging factor in performing OH initiatives. Causes for that are the difficulties in promoting meaningful and equal participation from diverse actors. Solutions proposed for this challenge focused on guiding stakeholders to think and collaborate beyond their professional and cultural silos to generate knowledge co-creation and innovative methodologies and frameworks. Finally, the biggest knowledge gap identified, in terms of proposed solutions, was for monitoring and evaluating OH initiatives. This highlights the need for future research on evaluation methods and tools specific for the OH approach, to provide credible evidence on its added value. When considering challenges endured by former OH initiatives and the proposed solutions for these challenges, practitioners should be able to plan and structure such initiatives in a more successful way, through the strategic pre-consideration of solutions or simply by avoiding known barriers.
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The consequences of leprosy go beyond the physical, social and psychological, as leprosy can drive persons affected and their families into poverty, stigmatization and disability. This paper describes the impact of a socio-economic development (SED) intervention that uses a twin-track approach (two micro-credit models) to reduce leprosy-related stigma in Cirebon District, Indonesia. A randomized-controlled mixed-methods study design was used to test the effectiveness of the SED intervention. Three scales were used to measure stigma and participation restrictions among 30 SED clients and 57 controls, 20 in-depth interviews with SED clients and seven Focus Group Discussions (FGDs) with key persons were held and 65 profiles of the clients were written up and analysed. The qualitative data shows the socio-economic status of 44 out of 65 SED clients (67%) improved. The median family income increased by 25%, more clients reported higher self-esteem, better interaction with neighbours and less stigma than before, although disclosure concerns remained an issue. The scales indicate a positive effect of the intervention on reducing stigma (e.g., Stigma Assessment and Reduction of Impact (SARI) stigma scale mean difference total score of pre and post assessment for SED clients versus the control group was 8.5 versus 5.6). A twin track socio-economic intervention, if embedded and integrated, can increase participation, and be constructive in reducing leprosy-related stigma.
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Desenvolvimento Econômico , Hanseníase/psicologia , Estigma Social , Adolescente , Adulto , Idoso , Pessoas com Deficiência/psicologia , Revelação , Feminino , Grupos Focais , Humanos , Indonésia , Masculino , Pessoa de Meia-Idade , Pobreza , Classe Social , Adulto JovemRESUMO
Introduction: Persons with mental illness experience social life restriction and stigma that may have implications for their work ability. The aims of this study are (i) to report experienced and anticipated discrimination and social functioning in persons with mental disabilities in Kenya and (ii) to investigate the association between experienced and anticipated discrimination, social functioning, and employment in this population. Materials and Methods: Cross-sectional study design where we randomly recruited 72 persons with mental illness through two networks of persons with psychosocial disabilities in Kenya. Experienced and anticipated discrimination were measured using the Discrimination and Stigma Scale version 12 (DISC 12) while social functioning was measured using the Social Functioning questionnaire (SFQ). Results: Experienced discrimination was reported by 81.9% in making or keeping friends, 69.7 and 56.3% in finding or keeping job, respectively, and 63.3% in dating or having an intimate relationship. Anticipated discrimination stopped 59.2% from applying for work, 40.8% from applying for education or training courses, and 63.4% from having a close personal relationship. Females reported an overall higher experienced discrimination than males. Unemployed participants had slightly increased rates of experienced and anticipated discrimination (9.5 vs. 9.1 and 2.5 vs. 2.3, respectively) (p > 0.05), while there was a significant association between impaired social functioning and unemployment [14.0 vs. 11.2 (p = 0.037)]. Conclusion: The rates of experienced and anticipated discrimination faced by persons with mental disabilities in Kenya is high and with significant gender disparity. Although no strong associations were observed between experienced and anticipated discrimination and employment, impaired social functioning of persons with mental disabilities seems to have implications for employment. Further research is essential to understand the predictors of the discrimination and measures to reduce them in persons with psychosocial disabilities.
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Despite an elaborated framework on reasonable accommodations in the UN Convention on the Rights of Persons with Disabilities (UN CRPD), persons with mental disabilities continue to face significant limitations to employment in East Africa. The aim of our study is to explore legal provisions related to reasonable accommodations in the employment-related laws regarding persons with mental disabilities in East Africa, and to suggest ways to bridge the gap between principles of international law and provisions of domestic laws. The disability, labour and human rights laws of 18 East African countries were accessed from the database of WHO MiNDbank and the International Labour Organisation. These laws were reviewed in the light of the framework of Article 27 of the UN CRPD. We found that 15 (83%) of the countries in East Africa have ratified the UN CRPD, and 12 (67%) have formulated an explicit definition of disability that includes mental illness. Eleven countries (61%) have explicit laws mandating employers to provide reasonable accommodations for persons with a mental disability. Eight countries (44%) have submitted a state report to the CRPD Committee. Lack of clear and specific definition of reasonable accommodations or the existence of vague definitions create challenges. If persons with a mental disability are to exercise their right to inclusive and gainful employment, there is a need for legal reforms that guarantee access to inclusive employment practices.
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Pessoas com Deficiência/legislação & jurisprudência , Emprego/legislação & jurisprudência , Deficiência Intelectual , África Oriental , Direitos Humanos/legislação & jurisprudência , Humanos , Deficiência Intelectual/psicologia , Discriminação Social/legislação & jurisprudênciaRESUMO
Introduction: Globally, mental illness affects social and occupational functioning. We aimed to highlight the barriers to employment experienced by persons with mental disabilities in Kenya and how they manage to find work against all the odds. Materials and Methods: Using a mixed-method study design, we purposely sampled persons with mental illness through networks of persons with psychosocial disabilities (Users and Survivors of Psychiatry and Africa Mental Health Foundation, Kenya). Qualitative data were obtained through in-depth interviews (n = 14) and four focus group discussions (n = 30), while a researcher-designed questionnaire was used to obtain quantitative data (n = 72). Results: We identified five major clusters of barriers to employment: mental illness factors, social exclusion and stigma, work identity crisis, non-accommodative environment, and socioeconomic status. Factors that facilitated employment include self-awareness and acceptance, self-employment, provision of reasonable accommodation, improved health services, addressing discriminatory laws and practices, and social development programs and support. Participants considered psychiatric illness the highest barrier to employment (63.2%), while supportive family/friends were considered the highest facilitator of employment (54.5%). Conclusion: The employment experiences of persons with mental disabilities are influenced by various interrelated factors in their social environment. Proactive social support and affirmative action by government may improve their employment opportunities and quality of life.
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BACKGROUND: In mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients' perspectives should be used in health care and research. This study aimed to understand the challenges people with bipolar disorder (BD) experience and examine what these challenges imply for health care and research needs. METHODS: Two qualitative studies were used, one to formulate research needs and another to formulate healthcare needs. In both studies focus group discussions were conducted with patients to explore their challenges in living with BD and associated needs, focusing on the themes diagnosis, treatment and recovery. RESULTS: Patients' needs are clustered in 'disorder-specific' and 'generic' needs. Specific needs concern preventing late or incorrect diagnosis, support in search for individualized treatment and supporting clinical, functional, social and personal recovery. Generic needs concern health professionals, communication and the healthcare system. CONCLUSION: Patients with BD address disorder-specific and generic healthcare and research needs. This indicates that disorder-specific treatment guidelines address only in part the needs of patients in everyday clinical practice.
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Youth suicide is a public health problem in India, and young people in school, particularly adolescents, experience heavy psychological burden. Prevention programs, involving peer educators (PEs), have proved useful strategies to address this problem, but their impact on the PEs is less understood, particularly in India. This qualitative study aims to explore the changes observed in PE students who were involved in a 'mindfulness' and 'Support-Appreciate-Listen-Team' (SALT)-based peer education program to address suicidal behavior in Indian school students. One hundred and fourteen students were trained as PEs in six high schools in Pune to identify and respond to the needs of students in distress. By listening to the narratives of the PEs, their parents, school authorities, and the associated NGO team, we reflect on perceived social, emotional, behavioral, and cognitive changes in PEs. The PEs demonstrated enhanced caring for those in distress both inside and outside school by improved listening skills, self-awareness, care, and empathy. Furthermore, the program had a positive impact on their broad emotional intelligence and PEs expressed increased ownership of life, taking action, and seeking support where needed. The study concludes that mindfulness and SALT-based peer education (PE) programs are valuable for the PEs. This could be used to motivate PEs to volunteer in such programs. Other results are discussed and further research areas are suggested.