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BACKGROUND: Childbirth-related mortality and morbidity affect many women globally, especially in low-income countries like Ethiopia. Obstetric fistula-a preventable condition mainly caused by prolonged and obstructed labor-can lead to physical, psychological, and social challenges, affecting women's social participation and inclusion. OBJECTIVE: This study aims to understand women's social participation and inclusion experiences post-obstetric fistula surgery. METHODS: This study is part of a larger research project investigating the social inclusion process of women who have had obstetric fistula surgery in Ethiopia. For this study, we conducted a qualitative exploration of women's experiences, guided by a constructivist grounded theory approach. Twenty-one women discharged from fistula treatment facilities following obstetric fistula surgery were interviewed using a semi-structured interview guide. Data was analyzed using Charmaz's inductive analysis approach, which involves an initial line-by-line coding followed by focused coding to identify the most significant codes. Subsequently, sub-themes and themes were developed from the focused codes. RESULT: The data analysis revealed four themes reflecting the women's experiences of social participation and inclusion. These are the experience of recovery and the journey toward social participation, participating in expected and meaningful activities, the continued challenge with a romantic relationship, and formal and informal support. Overall, the women who received fistula surgery reported positive life changes, especially regarding their physical well-being. However, they continued to face social challenges such as financial hardship, reproductive health problems, and issues with marriage and family life, which negatively impacted their social participation and inclusion experiences. CONCLUSION: While more research is needed, the findings of this study suggest that the social aspects of obstetric fistula are crucial for healthcare professionals to consider. Providing appropriate care and support to address unmet social relationship, employment, and childcare needs could enable women to lead fulfilling lives.
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Participação Social , Humanos , Feminino , Etiópia , Adulto , Participação Social/psicologia , Adulto Jovem , Pessoa de Meia-Idade , Gravidez , Pesquisa Qualitativa , Complicações do Trabalho de Parto/cirurgia , Complicações do Trabalho de Parto/psicologia , Apoio Social , Fístula Vesicovaginal/cirurgia , Fístula Vesicovaginal/psicologiaRESUMO
The aim of this interpretive qualitative study was to explore how environmental factors influence the transition from relying solely on graphic symbols to using spelling in face-to-face communicative interactions, from the perspective of literate adults with speech and motor impairments who use augmentative and alternative communication (AAC). Fourteen adults either chose to submit a written story with weekly email follow-up, took part in interviews conducted via Zoom1, or chose to communicate solely by email. Researchers analyzed data using Charmaz's (2014) constructivist grounded theory approach. The analysis yielded three themes explaining environmental factors relevant to the transition from using graphic symbols to spelling in communication: (a) access to AAC systems and services; (b) knowledgeable and supportive communication partners who have high expectations; and (c) opportunities to learn reading, writing, and spelling. Supportive factors included providing sufficient time for spelling in communicative interactions, structured learning opportunities for practice and independence, opportunities to learn through socially meaningful interactions and having print-rich and language-rich activity settings. Slow speed in navigating graphic symbols and lack of ability to express an exact message were motivational reasons for participants to use spelling in communicative interactions. The interaction among environmental factors and person-related characteristics warrants further investigation.
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BACKGROUND: Infertility is a marginalized sexual and reproductive health issue in low-resource settings. Globally, millions are affected by infertility, but the lack of a universal definition makes it difficult to estimate the prevalence of infertility at the population level. Estimating the prevalence of infertility may inform targeted and accessible intervention, especially for a resource-limited country like Ethiopia. This study aims to estimate the prevalence of female infertility in Ethiopia using the Demographic and Health Survey (DHS) through two approaches: (i) the demographic approach and (ii) the current duration approach. METHODS: Data from 15,683 women were obtained through the 2016 Ethiopian DHS. The demographic approach estimates infertility among women who had been married/in a union for at least five years, had never used contraceptives, and had a fertility desire. The current duration approach includes women at risk of pregnancy at the time of the survey and determines their current length of time-at-risk of pregnancy at 12, 24, and 36 months. Logistic regression analysis estimated the prevalence of infertility and factors associated using the demographic approach. Parametric survival analysis estimated the prevalence of infertility using the current duration approach. All estimates used sampling weights to account for the DHS sampling design. STATA 14 and R were used to perform the statistical analysis. RESULTS: Using the demographic definition, the prevalence of infertility was 7.6% (95% CI 6.6-8.8). When stratified as primary and secondary infertility, the prevalence was 1.4% (95% CI 1.0-1.9) and 8.7% (95% CI 7.5-10.1), respectively. Using the current duration approach definition, the prevalence of overall infertility was 24.1% (95% CI 18.8-34.0) at 12-months, 13.4% (95% CI 10.1-18.6) at 24-months, and 8.8% (95% CI 6.5-12.3) at 36-months. CONCLUSION: The demographic definition of infertility resulted in a lower estimate of infertility. The current duration approach definition could be more appropriate for the early detection and management of infertility in Ethiopia. The findings also highlight the need for a comprehensive definition of and emphasis on infertility. Future population-based surveys should incorporate direct questions related to infertility to facilitate epidemiological surveillance.
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Infertilidade Feminina , Humanos , Etiópia/epidemiologia , Feminino , Adulto , Prevalência , Infertilidade Feminina/epidemiologia , Adulto Jovem , Adolescente , Pessoa de Meia-Idade , Inquéritos Epidemiológicos , GravidezRESUMO
INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.
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Pessoal de Saúde , Malária , Pesquisa Qualitativa , Humanos , Malária/psicologia , Malária/reabilitação , Etiópia/epidemiologia , Pessoal de Saúde/psicologia , Feminino , Masculino , Criança , Adulto , Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Crianças com Deficiência/reabilitação , Crianças com Deficiência/psicologia , PercepçãoRESUMO
The psychological, social, and financial disabilities caused by infertility are significant for women, particularly those living in low- and middle-income countries such as Ethiopia. Although rehabilitation can be an important form of support for such women, infertility is frequently overlooked as a disability or potential target of rehabilitation interventions. This study aimed to determine what rehabilitation-related services and supports are available for women experiencing infertility in Ethiopia. We used an Interpretive Description design. We purposefully selected fourteen rehabilitation, medical, and policy service providers from diverse institutions across three geographical locations. We used semi-structured questions during our in-person and telephone interviews. The data were analyzed using reflexive thematic analysis with the assistance of NVivo. We identified five main themes, including (a) policies related to infertility, (b) the concept that disabilities are physically visible fails to recognize infertility, (c) the need for rehabilitation services for women with infertility, (d) the importance of wellness services for women experiencing infertility, and (e) the role of religion in rehabilitation services. In conclusion, it is essential to strengthen the policies around infertility, incorporate rehabilitation services in fertility care, and view infertility as a disabling condition for women who experience it in Ethiopia.
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Infertilidade Feminina , Humanos , Etiópia , Feminino , Infertilidade Feminina/psicologia , Infertilidade Feminina/reabilitação , AdultoRESUMO
PURPOSE: This study explored severe malaria-related disability in children from the perspectives of their caregivers. MATERIALS AND METHODS: The interpretive description qualitative approach was employed. The participants were selected using the purposive sampling technique considering the child's history of severe malaria, age (0-10 years), and location (urban/rural). Data were collected through face-to-face interviews with sixteen caregivers. Reflexive thematic data analysis was utilized. Through prolonged engagement, reflective journaling, an audit trail, and co-authors' review, trustworthiness was enhanced. RESULTS: The study generated five themes from the interviews: mitigators of disability, contributors of disability, impact on body function, impact on activities and participation, and uncertainties about future well-being. The findings revealed previously unstudied social components of disability and environmental factors. Furthermore, the research uncovered health-related quality of life aspects that are out of the scope of the current comprehensive disability framework. CONCLUSIONS: The study contributes to a deeper understanding of severe malaria-related disability in children from the biopsychosocial perspective. The findings could help policymakers, researchers, and clinicians who want to design rehabilitation interventions for the affected children or examine the components of disability on a large scale using quantitative methods.IMPLICATIONS FOR REHABILITATIONVarious contextual factors interacted with severe malaria and influenced functioning either as facilitators or barriers, implying disability related to malaria can be prevented or created.The long-term impacts of severe malaria are not limited to functioning and disability but also affect the health-related quality of life of children who survive severe malaria.Rehabilitation professionals should consider applying comprehensive functioning and disability frameworks such as the ICF when designing (or applying) screening tools, planning interventions, and evaluating the outcomes of intervention for children with severe malaria-related disability.Rehabilitation interventions for children with severe malaria-related disability should consider patient- or caregiver-reported outcomes (components of disability).
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Background: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced FQOL. However, FQOL research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries. Objectives: The authors examined how Ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance FQOL. Method: Building on a previous study exploring Ethiopian families' perspectives on FQOL, the authors used an exploratory descriptive qualitative approach to interview various support providers. Interviews were conducted virtually (because of the coronavirus disease 2019 [COVID-19] pandemic) in English or with interpreting assistance. Audio-recorded interviews were transcribed verbatim and analysed thematically. Results: Support providers affirmed what families had described as important for FQOL - spirituality, relationships, self-sufficiency - and recognised their enormous support needs. They described various ways to support families - emotionally, physically, materially and informationally. They also expressed challenges and their need for support to meet families' needs. Conclusion: Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family's needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish. Contribution: This study contributes to global understandings of FQOL and describes practical approaches to support families of children with disabilities in an African context. The findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance FQOL.
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PURPOSE: Disability is a consequence of severe malaria for a significant proportion of African children. This scoping review aims to describe the impact of severe malaria on African children according to current literature using an international biopsychical classification and framework of disability and functioning. MATERIALS AND METHODS: MEDLINE, EMBASE, Global Health, and CINHAL databases were searched for original research conducted on African children aged 0-18 using terms related to severe malaria and components of disability. Independent and dependent variables were extracted and classified using the World Health Organization's International Classification of Functioning, Disability, and Health-Children and Youth version (ICF-CY) using standardized coding methods. RESULTS: Seventy-two percent of the measured variables in the 34 included studies were coded as "body functions," (i.e., impairments), such as mental, neuromusculoskeletal, movement, and sensory functions, and 23.3% of variables were coded as "activities and participation" (i.e., activity limitations/participation restrictions), such as difficulties with general tasks and demands, communication, mobility, interpersonal interactions, and relationships. "Environment" variables such as family support, health access, education, or societal attitudes were not found in the included studies. CONCLUSIONS: Existing peer-reviewed quantitative research of severe malaria-related disability is focused on neurological sequelae, with less research about activity limitations and participation restrictions.
Promoting the use of a comprehensive biopsychosocial disability framework and classification system for severe malaria will provide a framework that other researchers, policymakers, and rehabilitation professionals can consider when looking at the best ways to support outcomes for children with severe malaria.Using a framework of the ICF-CY, we have highlighted the need for better research into child functioning outcomes in severe malaria research, especially within the domain of child participation.Policymakers should be encouraged to support better holistic evaluation, support, and rehabilitation of children who have had severe malaria.
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The government of Bangladesh enacted the Rights and Protection of Persons with Disability Act of 2013 (the Act) in line with the United Nations Convention on the Rights of Persons with Disabilities. This article sheds light on the Act with particular emphasis on (a) support offered to children with disabilities (CWDs) and their families to address their needs; and (b) the extent to which the Act is in line with the international disability policy analysis framework. We compared the Act with the 18 core concepts of disability policy developed by Turnbull et al. (2001). The results affirm the government's effort toward Sustainable Development Goals in providing support to CWDs and their families. They indicate a high degree of congruency of the Act with the core concepts. The findings also highlight the need to embrace the concepts of autonomy, confidentiality, and family-centeredness in great detail in any policy initiatives pertaining to CWDs. Furthermore, the finding shows that collaboration and coordination among ministries are imperative to achieve the goal of policies related to disability. In addition, the results highlight the need for more budgetary allocation and robust monitoring systems to track the progress of policy initiatives. As policy implementation is affected by changes in global contexts such as the coronavirus disease 2019 pandemic, policymakers in Bangladesh and other low- and middle-income countries should ensure that emergency responses are disability-inclusive and appropriate for CWDs. To ensure a disability-inclusive response, it is critical to engage individuals with disabilities and their families in meaningful consultations to identify their needs.
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Background: Ethiopia, as a State Party to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), has committed to upholding the rights of people with disabilities in Ethiopia. There is little evidence, however, reflecting the impact of this commitment on the lived experiences of people with disabilities in Ethiopia. Objectives: This study sought to uncover how the experiences of participation and activity shape the enactment of rights for Ethiopians with disabilities as enshrined in the UNCRPD. Method: Analysis of 25 qualitative interviews with people with disabilities and family members living in Ethiopia used a reflexive thematic analysis approach to arrive at central themes. Results: People with disabilities in Ethiopia experience marginalisation, distress and practical challenges in both routine daily activities and participation in broader social roles and opportunities. These experiences affect their ability to claim many of the rights afforded by the UNCRPD. Conclusion: Despite legislative efforts to bring about change in Ethiopia, people with disabilities continue to live on the social margins. A meaningful change will require substantial allocation of needed resources by the Ethiopian government to support national-level programmes and policy change. It is critical that people with disabilities and their families are engaged in receiving relevant support, and serve as change leaders. Contribution: This study illustrates how marginalisation, distress and practical challenges in daily activities and social participation arise and are sustained for people with disabilities in Ethiopia. The findings can help to inform the country's efforts to enact the rights of Ethiopians with disabilities as enshrined in the United Nations Convention on the Rights of Persons with Disabilities.
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In Ghana, many persons with physical disabilities are members of populations who face health disparities including physical, structural, knowledge, attitudinal and financial barriers to various health care services compared to those without disabilities. However, there is limited evidence on how to improve access to primary health care services for persons with physical disabilities. This study aimed to understand persons with physical disabilities' experiences and health care providers' perspectives for improving access to primary health care for persons with disabilities in rural Ghana. We used a qualitative approach and interviewed 33 persons with physical disabilities and health care providers, and thematically analysed data from in-depth interviews. We identified 4 major themes. According to the participants, health care could be more accessible by: i) Making it more affordable; ii) Increasing the availability of providers and services; iii) Providing more education about system navigation; and iv) Improving access to disability friendly health facilities and equipment. Participants' recommendations were nested in the areas of policy and practice modifications. Policy makers need to consider supporting persons with physical disabilities who cannot afford non-medical services (i.e., cost of transportation). In terms of practice, the provision of education and training related to physical disability issues should be extended to both clinical and nonclinical health workers for better client centered care. There is an urgent need for policy makers and relevant key stakeholders to include persons with physical disabilities in designing and implementing policies and programs to ensure that they are meeting their needs.
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Pessoas com Deficiência , Acessibilidade aos Serviços de Saúde , Gana , Pessoal de Saúde , Humanos , Atenção Primária à SaúdeRESUMO
Introduction and Objectives: It is well-documented that single mothers in sub-Saharan Africa face unique psychosocial challenges which can lead to child health and developmental disadvantages, often impacting life trajectories for both the mother and child. Years of instability, conflict, and widespread poor governance within the Democratic Republic of Congo (DRC) have resulted in magnified challenges for parents, making it more difficult to provide supportive and effective parenting. To address gaps in knowledge regarding the specific challenges experienced and adaptations made among single mothers raising children in contexts of adversity, the present study aimed to investigate the phenomenon of single mother parenting in the DRC. Methods: Cognitive Edge SenseMaker, a mixed-method data collection tool, was used to collect self-interpreted narratives among parents in eastern DRC. Quantitative SenseMaker data were uploaded into Tableau, a data organization and analysis tool, to visualize differences in response patterns between single mother (n = 263) and two-parent family study participants (n = 182). Single mother micronarratives (n = 251) were then coded line-by-line and analyzed thematically. Qualitative themes identified in the single mother micronarratives were used to facilitate a deeper and more nuanced understanding of key quantitative SenseMaker findings. Findings and Conclusions: Our study found that single mothers experienced immense challenges raising children in the DRC, including financial-, health- and parenting-related hardships. Single mothers described negative emotions and higher levels of household adversity while providing for their children in situations of extreme poverty compared to two-parent family respondents. Self-reliance was exhibited among most single mothers in an attempt to overcome challenges, primarily financial barriers, and to prioritize the health and well-being of their children. However, many children still lacked access to sufficient food, education, and healthcare. Limited governmental and social security support for single mothers was identified as contributing to heightened challenges and the self-reliance observed among single mothers. Findings emphasize that additional research and attention should be directed towards identifying the specific needs of, and available resources for, single mothers in different localities in an effort to inform policies and programs that best support families.
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Mães , Poder Familiar , Criança , República Democrática do Congo , Feminino , Humanos , Percepção , Apoio SocialRESUMO
Background: The term 'last mile' has been used across disciplines to refer to populations who are farthest away, most difficult to reach, or last to benefit from a program or service. However, last mile research lacks a shared understanding around its conceptualization.Objectives: This project used a concept mapping process to answer the questions: what is last mile research in global health and, how can it be used to make positive change for health equity in the last mile?Methods: Between July and December 2019, a five-stage concept mapping exercise was undertaken using online concept mapping software and an in-person consensus meeting. The stages were: establishment of an expert group and focus prompt; idea generation; sorting and rating; initial analysis and final consensus meeting.Results: A group of 15 health researchers with experience working with populations in last mile contexts and who were based at the Matariki Network institutions of Queen's University, CAN and Dartmouth College, USA took part. The resulting concept map had 64 unique idea statements and the process resulted in a map with five clusters. These included: (1) Last mile populations; (2) Research methods and approaches; (3) Structural and systemic factors; (4) Health system factors, and (5) Broader environmental factors. Central to the map were the ideas of equity, human rights, health systems, and contextual sensitivity.Conclusion: This is the first time 'last mile research' has been the focus of a formal concept mapping exercise. The resulting map showed consensus about who last mile populations are, how research should be undertaken in the last mile and why last mile health disparities exist. The map can be used to inform research training programs, however, repeating this process with researchers and members from different last mile populations would also add further insight.
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Equidade em Saúde , Consenso , Exercício Físico , Humanos , Projetos de Pesquisa , PesquisadoresRESUMO
BACKGROUND: Family support is an essential component of caring for children with intellectual or developmental disability (IDD), however, specific family support needs in developing countries, such as Ethiopia, have received minimal attention in the literature to date. OBJECTIVES: This study sought to understand the specific disability-related support needs of families with children with IDD in Addis Ababa, Ethiopia. We answered the following questions: (1) How do family members of children with IDD in the Mekaneyesus Centre in Addis Ababa currently meet their disability-related support needs?; (2) what are these family members' most pressing unmet disability-related needs? and (3) how do family members perceive their capacity to meet their support needs? METHOD: This study drew from an exploratory qualitative descriptive approach with 16 family members of children with IDD, recruited from a centre for children with IDD. We conducted semi-structured interviews in Amharic. We transcribed and translated interviews into English and guided by a conceptual framework for family support from Kyzar et al. (2012), we thematically analysed the data. RESULTS: Participants identified instrumental and emotional needs to be most prominent, with additional discussion around various physical and informational needs. Participants identified childcare as the most significant unmet need, which resulted in the loss of various important life roles. The participants discussed major sources of support coming from spirituality, family members and community. Stigma emerged as a critical family support theme external to the Kyzar et al. (2012) classifications of family support. CONCLUSION: Although family members are adapting and responding to meet their needs in the best way they can, additional support, particularly related to childcare and future planning, is essential.
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Purpose: Deafblindness, also known as dual sensory loss, creates a distinct condition more disabling than either deafness or blindness alone. The participation experiences of persons with deafblindness have not been understood well. This phenomenological study aims to understand the meanings of participation for persons with deafblindness and identify the domains of life that are important to them.Methods: We used the International Classification of Functioning, Disability and Health as a guiding framework. Sixteen adults with deafblindness were interviewed between March and May 2017 in India using a qualitative interview guide.Results: Findings suggest participation as a dynamic, individualized construct that is not just an end outcome. Rather, it is a means to achieve other goals important to the participants such as gaining respect, autonomy, independence, support and relationships, to fulfill aspirations and responsibilities, and to feel included and recognized in society. Life domains that they deemed important for participation were communication and access to information, mobility, relationships, education and productivity, and recreation and leisure.Conclusions: In order to enhance societal participation of people with deafblindness, a significant change in the focus of rehabilitation services is required which involves professionals viewing participation as both a means and an end outcome while designing interventions.
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Surdocegueira , Pessoas com Deficiência , Adulto , Cegueira , Humanos , Índia , Atividades de LazerRESUMO
BACKGROUND: Inclusive education is internationally recognised as the best strategy for providing equitable quality education to all children. However, because of the unique challenges they often present, children with intellectual and developmental disabilities (IDDs) are often excluded from inclusive schools. To date, limited research on inclusion has been conducted involving children with IDD as active participants. OBJECTIVES: The study sought to understand the experiences of children with IDDs in learning in inclusive schools in Accra, Ghana. METHOD: A qualitative descriptive design was utilised with 16 children with IDDs enrolled in inclusive schools in Accra, Ghana. Participants were recruited through purposive sampling and data were collected using classroom observations, the draw-and-write technique and semi-structured interviews. The data were analysed to identify themes as they emerged. RESULTS: Children's experiences in inclusive schools were identified along three major themes: (1) individual characteristics, (2) immediate environments and (3) interactional patterns. Insights from children's experiences reveal that they faced challenges including corporal punishment for slow performance, victimisation and low family support relating to their learning. CONCLUSION: Although children with IDDs receive peer support in inclusion, they experience diverse challenges including peer victimisation, corporal punishment and low family and teacher support in their learning. Improvement in inclusive best practices for children with IDD requires systematic efforts by diverse stakeholders to address identified challenges.
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OBJECTIVE: To identify and describe the contextual factors that influence the participation of people with deafblindness in India. DESIGN: Qualitative study, using directed content analysis approach and the International Classification of Functioning, Disability and Health (ICF) as a framework to analyze the data. SETTING: Community and social participation settings. PARTICIPANTS: Community-dwelling individuals with deafblindness (N=16). Age ranges from 18-45 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Personal and environmental factors that influence the participation of individuals with deafblindness using the ICF framework. RESULTS: Results indicate that the age of onset and nature of impairment (deafblindness) and willingness to explain the condition (functional consequences of deafblindness) emerged as important personal factors. Access to resources such as assistive technology, social support, and deafblind-specific services were found to be enablers of participation. Lack of services, systems, and policies specific to deafblindness along with negative societal attitude toward disability were highly perceived environmental barriers that influence participation of people with deafblindness in India. CONCLUSIONS: Professionals must acknowledge aspects of the environment in conducting assessments and delivering interventions and understand the dynamic interactions between environment of the individual and his/her concurrent vision and hearing impairments. Approaches to enable participation require rehabilitation professionals to work with those with deafblindness to advocate for removal of environmental barriers and ensure provision of appropriate resources from the government to facilitate their participation. Social policy and government must ensure emphasis on awareness about deafblindness, access to deafblind-specific services, positive societal attitude, and opportunities for full participation for people with deafblindness in society.
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Surdocegueira/reabilitação , Pessoas com Deficiência/reabilitação , Meio Ambiente , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Participação Social , Atividades Cotidianas , Adolescente , Adulto , Comunicação , Surdocegueira/classificação , Países em Desenvolvimento , Feminino , Humanos , Índia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Tecnologia Assistiva , Apoio Social , Adulto JovemRESUMO
BACKGROUND: A growing body of evidence has shown that persons with physical disabilities experience substantial barriers in accessing primary healthcare (PHC) services in rural areas. Negative attitudes from healthcare providers and inaccessible healthcare facilities and equipment are common experiences that negatively affect access to quality healthcare for persons with physical disabilities. However, there is limited research that explores this issue from the perspectives of healthcare providers. This qualitative study explores the perspectives of healthcare providers in delivering PHC services to persons with physical disabilities in rural Ghana. Understanding healthcare providers' perspectives could help leverage previous findings from clients' experiences to more fully inform the development of specific and actionable research and interventions to improve healthcare delivery for disabled people. METHODS: We conducted in-depth interviews with 15 healthcare providers and used thematic analysis to analyze the data. RESULTS: Participants reported their perspectives in three major themes: challenges in providing healthcare (eg, limited availability of drugs and medical equipment, limited healthcare providers, financial constraints, and inaccessible facilities and equipment); strategies in navigating the challenges (eg, improvising techniques and employing professional values, referring clients, and providing financial assistance to clients); and positive experience in providing healthcare (eg, feeling rewarded and appreciated). CONCLUSION: The findings reinforce the need to consider the availability of rehabilitation professionals and services to address the specific healthcare needs of disabled people at the PHC level in Ghana. The findings also point to a need for further research on the perspectives of healthcare policymakers about how to navigate the systemic barriers encountered by providers in providing care to persons with physical disabilities in rural Ghana in particular, and other similar rural areas.
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Atitude do Pessoal de Saúde , Pessoas com Deficiência/reabilitação , Pessoal de Saúde/psicologia , Atenção Primária à Saúde/métodos , População Rural , Adulto , Feminino , Gana , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adulto JovemRESUMO
The United Nations Convention on the Rights of Persons with Disabilities recognizes the rights of persons with disabilities' access to health care, including primary health care (PHC). However, growing evidence indicates that individuals in rural areas generally experience health access issues, and these issues are even worse for those with physical disabilities. Knowledge about such experiences is critical for policy design and clinical practice to promote PHC access for persons with physical disabilities in rural areas. This study seeks to explore the experiences of persons with physical disabilities in accessing PHC services in the predominantly rural Upper West Region of Ghana. We conducted semi-structured interviews with 18 participants living with physical disabilities, and used both deductive and inductive approaches to analyze the data. Participants shared experiences at three broad levels: the health system level, individual level and health-seeking behaviors level. Within the health system level, we identified three main categories: service availability (presence of health facilities, deficient drug supply and lack of providers), acceptability (positive and negative attitudes of providers and perceived high and low quality of care) and accommodation (inaccessible health facilities and equipment). The experiences at the individual level included financial constraints and mobility to health care facilities. Health-seeking behaviors related to how the individual reacted and responded to access barriers, which included searching for traditional healing, resorting to self-medication, making sacrifices in managing their conditions and relying on spiritual means. The information provided in this study is potentially important to policy makers and PHC providers as it presents evidence on the barriers and facilitators to PHC access in a rural setting. In particular, understanding individuals' experiences and how they develop health-seeking behaviors to overcome access barriers will be critical for policy design and client-centered service delivery in rural Ghana and potentially other low- and middle-income countries.
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Pessoas com Deficiência/psicologia , Acessibilidade aos Serviços de Saúde , Preparações Farmacêuticas/economia , Atenção Primária à Saúde , Serviços de Saúde Rural , Adolescente , Adulto , Pessoas com Deficiência/estatística & dados numéricos , Feminino , Gana , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto JovemRESUMO
Photovoice is a group analysis method often affiliated with participatory action research (PAR). It has become increasingly popular in qualitative research with people with physical disabilities. This article details the results of a study that sought to understand the scope of the literature related to how photovoice is conducted with people with physical disabilities. We performed a scoping review related to use of photovoice in physical disabilities research. We identified 20 articles that featured diverse participants with physical disabilities and demonstrated a range of approaches to data collection, analysis, and dissemination. Nearly all of the articles identified used photovoice to study physical accessibility/navigation of space. Although a majority of selected articles purported to use PAR approaches, many articles demonstrated research that may not be as participatory as presumed. Based on the findings, we provide suggestions for photovoice studies that will ensure full and meaningful participation of members involved.