Search results for: barriers in disability care

Authors: Asma Batool

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Immigrant families raising a child with developmental disabilities in Canada encounter many challenges during the process of disability care. Starting from the early screening of their child for diagnosis followed by challenges associated with treatment, access and service utilization. A substantial amount of research focuses on identifying barriers. However, the functional aspects of barriers in terms of their potential influences on parents and children with disabilities are unexplored yet. This paper presents functional analysis of barriers in disability care research by adopting a method of integrated approach. Juxtaposition of two developmental approaches, Bronfenbrenner’s ecological model and parents ‘transformational process model is generating multiple hypotheses to be considered while empirically investigating causal relationships and mediating or moderating factors among various variables related with disability care research. This functional analysis suggests that barriers have negative impacts on the physical and emotional development of children with disabilities as well as on the overall quality of family life (QOFL). While, barriers have facilitating impacts on parents, alternatively, the process of transformation in parents expedite after experiencing barriers. Consequently, parents reconstruct their philosophy of life and experience irreversible but continuous developmental change in terms of transformations simultaneously with their developing child and may buffer the expected negative impacts of barriers on disabled child and QOFL. Overall, this paper is suggesting implications for future research and parents’ transformations are suggesting potential pathways to minimize the negative influences of barriers that parents experience during disability care, hence improving satisfaction in QOFL in general.

Keywords: barriers in disability care, developmental disabilities, parents’ transformations, quality of family life

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Authors: Jayanti Pujari

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The present study attempts to find out the barriers faced by adult women with an Intellectual disability during their training at vocational training centres offered by rehabilitation institutes. As economic independence is the ultimate aim of rehabilitation, this study tries to focus on the barriers which restrict the adult women with intellectual disability in equipping themselves in required skill which can really empower them and help them in independent living. The objectives of the study are (1) To find out the barriers perceived by job coaches during training given to women with intellectual disability (2) To find out the barriers perceived by the parents of women with intellectual disability who are undergoing vocational training and (3) To find out the barriers perceived by the women with intellectual disabilities during the vocational training. The barriers have been operationalised in the present study from three perspectives such as behavioural barriers, competency related barriers and accessibility barriers. For the present study three groups of participants(N=60) have been selected through purposive nonprobability sampling procedure to generate the data. They are( 20) job coaches who are working at vocational centres, (20) parents of women with intellectual disabilities, (20) adult women with intellectual disabilities. The study followed a descriptive research design and data are generated through self developed questionnaire. Three sets of self-developed and face validated questionnaires were used as the tool to gather the data from the three categories of sample. The questionnaire has 30 close ended questions and the respondents have to answer on a three point scale (yes, no, need help). Both qualitative and quantitative analysis was conducted to test the hypothesis. The major findings of the study depict that the 87% of the women with intellectual disability perceived highest barriers related to competency whereas barriers related to behaviour and accessibility are perceived lowest. 92% of job coaches perceived barriers related to competencies and accessibility are highest which hinder the effectiveness of skill development of women with intellectual disability and 74% of the parents of adult women with intellectual disability also opines that the barriers related to competencies and accessibility are highest. In conclusion, it is stressed that there is need to create awareness among the stakeholders about the training and management strategies of skill training and positive behaviour support which will surely enable the adult women with intellectual disability to utilise their residual skill and acquire training to become economically independent.

Keywords: economic independence, intellectual disability, skill development, training barrier

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Authors: Elena Ivany, Leanne Aitken

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Little is known about the delivery of end-of-life care in cardiac intensive care unit (CICU) settings. The aims of this study were to highlight the nurse-identified barriers and facilitators to delivering end-of-life care in the CICU, and to identify whether any of the barriers and/or facilitators are specific to the CICU setting. This was an exploratory qualitative study utilizing semi-structured individual interviews as the data collection method and inductive thematic analysis to structure the data. Six CICU nurses took part in the study. Five key themes were identified, each theme including both barriers and facilitators. The five key themes are as follows: patient-centered care, emotional challenges, reaching concordance, nursing contribution and the surgical intensive care unit.

Keywords: end-of-life, cardiovascular disease, cardiac surgery, critical care

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Comprehensive and compassionate palliative care and support requires an integrated system of care that draws on formal health and social service providers working together with community and informal networks to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the community supports, services, and informal networks that health care professionals and social service providers rely on to allow their patients to die in their homes and communities. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers that arise as health care and social service providers attempt to build networks of care for patients with life limiting illnesses and families. Three main findings emerged: First, the variability that arises due to systemic barriers in accessing and providing care; second, the exceptionally challenging workload that providers are facing as they work to address complex social care needs (housing, disability, food security), along with escalating palliative care needs; and, finally, the lack of structural support that providers and informal care networks receive. Conclusion: These findings will facilitate and build stronger person-centred/relationship-centred principles and practices between providers, patients, community, and informal care networks by highlighting the systemic barriers to accessing and providing person-centred care. Further, they will have important implications for future partnerships in integrated care delivery programs and initiatives, community policies, education programs, and provincial and national palliative care strategies.

Keywords: public health palliative care, palliative care nursing, care networks, informal care, integrated health care

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Authors: Jui-Chen Huang

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The purpose of this study is to explore the effects of telecare on preventing and delaying the quality of disability care in elderly people with portable comfort Bluetooth brainwave devices with remote healthcare functions. Through the teaching videos and remotely teaching the elderly, which had ever learned the care courses of the prevent and delay disability, these elderly did muscle strength training. Then this paper explores the effect of training with the data by SPSS 18.0 statistical software. The data is collected with pre-test, post-test and analyze data from the measure of the Bluetooth brain wave equipment including the pressure index, relaxation index, attention and fatigue index of the elderly. In this study, 30 elderly people who had taken preventive and delayed disability care courses were studied to explore the effect of their care quality improvement. The results showed that the pressure index, relaxation index, attention, and fatigue index of the elderly had statistically significant differences in two months. It can be seen that elderly people who have been treated to prevent and delay disability care courses can significantly improve their care quality if they continue to receive intensive training to prevent and delay disability through remote mode. This telecare is applied to the elderly program that has been used to prevent and delay disability care courses. It is worth continuing to promote, and it is recommended that follow-up studies be conducted in a longer-term manner to explore long-term benefits. It can solve the current insufficiency of long-term care resources, but the demand is urgent.

Keywords: telecare, bluetooth brainwave equipment, prevention and delay of disability, the elderly, care quality

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Authors: Surendra Kumar Patel

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Disability is not just a health problem; it is a complex phenomenon, reflecting the interaction between features of a person’s age and physiology. Population ageing is a major demographic issue for India in the 21st century. Older population of India constituted 8% of total population, while 5.19% has affected by disability of older age group. Objective of the present research paper is to examine the state wise differential in disability among 60+ population and to access the health care of disabled population especially the 60+ disabled persons. The data sources of the present paper are census 2001 and 2011. For analyzing the state wise differentials by disability types and comparative advantage of data, rate, ratio, and percentage have been used. The Standardized Index of Diversity of Disability (SIDD) studies differential and diversity in disability. The results show that there are 5.19% persons have disability among 60+ population and sex differential not very significant, as it is 5.3 % of male and 5.05% in female in India but place of residence shows significant variation from 2001 to 2011 census. There is huge diversity in disability prevalence among 60+ in India, highest in Sikkim followed by Rajasthan, approximately, they comprise 11%, and the lowest found in Tamil Nadu as 2.53%. This huge gap in prevalence percentage shows the health care needs of highly prevailing states.

Keywords: disability, Standardized Index of Diversity of Disability (SIDD), differential and diversity in disability, 60+ population

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Authors: Muhammad Naveed Babur, Maria Liaqat

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Background & Objective: People with disabilities especially neurological disabilities have many unmet health and rehabilitation needs, face barriers in accessing mainstream health-care services, and consequently have poor health. There are not sufficient epidemiological studies from Pakistan which assess barriers to neurorehabilitation and ways to counter it. Objectives: The objective of the study was to determine the challenges and to evaluate the barriers for neuro-rehabilitation services in developing countries. Methods: This is Exploratory sequential qualitative study based on the Panel discussion forum in International rehabilitation sciences congress and national rehabilitation conference 2017. Panel group discussion has been conducted in February 2017 with a sample size of eight professionals including Rehabilitation medicine Physician, Physical Therapist, Speech Language therapist, Occupational Therapist, Clinical Psychologist and rehabilitation nurse working in multidisciplinary/Interdisciplinary team. A comprehensive audio-videography have been developed, recorded, transcripted and documented. Data was transcribed and thematic analysis along with characteristics was drawn manually. Data verification was done with the help of two separate coders. Results: After extraction of two separate coders following results are emerged. General category themes are disease profile, demographic profile, training and education, research, barriers, governance, global funding, informal care, resources and cultural beliefs and public awareness. Barriers identified at the level are high cost, stigma, lengthy course of recovery. Hospital related barriers are lack of social support and individually tailored goal setting processes. Organizational barriers identified are lack of basic diagnostic facilities, lack of funding and human resources. Recommendations given by panelists were investment in education, capacity building, infrastructure, governance support, strategies to promote communication and realistic goals. Conclusion: It is concluded that neurorehabilitation in developing countries need attention in following categories i.e. disease profile, demographic profile, training and education, research, barriers, governance, global funding, informal care, resources and cultural beliefs and public awareness. This study also revealed barriers at the level of patient, hospital, organization. Recommendations were also given by panelists.

Keywords: disability, neurorehabilitation, telerehabilitation, disability

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Authors: Erin C. Rodenburg, Jennifer McWhirter, Andrew Papadopoulos

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Support workers for adults with developmental disabilities promote the care and wellbeing of a historically underserved population. Poor employment training and low work satisfaction for these disability support workers are linked to low productivity, poor quality of care, turnover, and intention to leave employment. Therefore, to improve the lives of those within disability support homes, both client and caregiver, it is vital to determine where improvements to training and support for those providing direct care can be made. The current study aims to explore disability support worker’s perceptions of the training received in their employment at the residential homes, how it prepared them for their role, and where there is room for improvement with the aim of developing recommendations for an improved training experience. Responses were collected from 85 disability support workers across 40 Ontario group homes. Findings suggest most disability support workers within the 40 support homes feel adequately trained in their responsibilities of employment. For those who did not feel adequately trained, the main issues expressed were a lack of standardization in training, a need for more continuous training, and a move away from trial and error in performing tasks to support clients with developmental disabilities.

Keywords: developmental disabilities, disability workers, support homes, training

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Authors: Sidra Jawed

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The accessibility constructs and the body privilege discourse has been a major problem while dealing with health inequities and inaccessibility. The inherent problem in this arbitrary view of disability is that disability would never be the productive way of living. For past thirty years, disability activists have been working to differentiate ‘impairment’ from ‘disability’ and probing for more understanding of limitation imposed by society, this notion is ultimately known as the Social Model of Disability. The vulnerable population as disability community remains marginalized and seen relentlessly fighting to highlight the importance of social factors. It does not only constitute physical architectural barriers and famous blue symbol of access to the healthcare but also invisible, intangible barriers as attitudes and behaviours. Conventionally the idea of ‘disability’ has been laden with prejudiced perception amalgamating with biased attitude. Equity in contemporary setup necessitates the restructuring of organizational structure. Apparently simple, the complex interplay of disability and contemporary healthcare set up often ends up at negotiating vital components of basic healthcare needs. The role of society is indispensable when it comes to people with disability (PWD), everything from the access to healthcare to timely interventions are strongly related to the set up in place and the attitude of healthcare providers. It is vital to understand the association between assumptions and the quality of healthcare PWD receives in our global healthcare setup. Most of time the crucial physician-patient relationship with PWD is governed by the negative assumptions of the physicians. The multifaceted, troubled patient-physicians’ relationship has been neglected in past. To compound it, insufficient work has been done to explore physicians’ perspective about the disability and access to healthcare PWD have currently. This research project is directed towards physicians’ perspective on the intersection of health and access of healthcare for PWD. The principal aim of the study is to explore the perception of disability in family medicine physicians, highlighting the underpinning of medical perspective in healthcare institution. In the quest of removing barriers, the first step must be to identify the barriers and formulate a plan for future policies, involving all the stakeholders. There would be semi-structured interviews to explore themes as accessibility, medical training, construct of social model and medical model of disability, time limitations, financial constraints. The main research interest is to identify the obstacles to inclusion and marginalization continuing from the basic living necessities to wide health inequity in present society. Physicians point of view is largely missing from the research landscape and the current forum of knowledge with regards to physicians’ standpoint. This research will provide policy makers with a starting point and comprehensive background knowledge that can be a stepping stone for future researches and furthering the knowledge translation process to strengthen healthcare. Additionally, it would facilitate the process of knowledge translation between the much needed medical and disability community.

Keywords: disability, physicians, social model, accessibility

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Authors: Farzaneh Yazdani, Nastaran Yazdani, Laya Nobakht

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The aim of this study was to explore the changes that may happen in students attitudes regarding disability after attending the module ‘Disability: theories, nature and experiences’ designed around reflective self-awareness exercises. Literature indicates enhanced knowledge does not automatically lead to changes in attitude. Health care professionals are the most significant people to instil hope in their clients to pursue a happy life. As an advocate for people with disability, health care professionals need to believe themselves in people with disability being able to pursue a happy life as an abled body does. Researchers aimed to explore the impact of the ‘Disability’ module using discussion and reflective exercises, on students’ way of thinking and possible changes in attitude towards disability. Students were asked to write stories from the beginning and after completing the module. A thematic analysis was applied to identify the students’ way of communicating their thoughts and feelings about disable-bodied /disability before and after the module. Three major themes were identified to represent the differences before and after attending the module as: problem /solution oriented approach towards perceived problems, separating/ integrating disable/able-bodied, passive/ active role of disable-bodied and society.

Keywords: qualitative study, reflection, rehabilitation, thematic analysis

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Authors: Ebele V. Okoli, Emmanuel Nwobi, Dozie Ezechukwu, Ijeoma Itanyi

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One in seven people worldwide suffer from a disability. 80% of people with disabilities live in developing countries. Negative attitudes and misconceptions among health-care providers constitute barri¬ers to optimal health care for people with disabilities. This underscores the relevance of a study of the attitude of Nigerian medical students towards disability and their willingness to work in the disability sector. This was a descriptive cross-sectional study conducted among 254 penultimate and final year medical students of a university in southeastern Nigeria. The mean age of the students was 24.8 ± 3.12 years. Majority of the students were male (75.2%), single (96.9%), of the Igbo tribe (86.6%), Christian (97.6%) and grew up in urban areas (68.1%). Results indicated that the medical students had a predominantly positive attitude towards people with disability as 73.8% had a positive attitude and mean attitude score was 67.03 ± 0.14 (positive attitude = 61 – 120, negative attitude = 0 - 60). Chi-square analysis did not show any significant effect of demographic and social factors on the students’ attitude towards People with Disabilities. The students were mostly willing to work in areas that address the challenges of people with disability (70.4%) but a greater proportion had never heard about Disability Studies (67.5%). About a third of the students (33.2%) would like to travel abroad to practice in the disability sector. Conclusions: The students generally had a positive attitude towards people with disability and a greater percentage were willing to work in the disability sector in their future career. About two-thirds had however, never heard about disability studies. There was some potential for brain drain among the students as a third of the population intended to practice abroad on graduation.

Keywords: attitudes, career interest, disability, medical students

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Authors: Adi Goldiner

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Historically, the social model of disability has played a pivotal role in bringing rights discourse into the disability debate. Against this backdrop, the paper explores the conceptual alignment between the social model’s account of disability and the nature of rights. Specifically, the paper examines the possibility that the social model conceptualizes disability in a way that aligns with the nature of rights and thus motivates the invocation of disability rights. Methodologically, the paper juxtaposes the literature on the social model of disability, primarily the work of the Union of the Physically Impaired Against Segregation in the UK and related scholarship, with theories of moral rights. By focusing on the interplay between the social model of disability and rights, the paper provides a conceptual explanation for the rise of disability rights. In addition, the paper sheds light on the nature of rights, their function and limitations, in the context of disability rights. The paper concludes that the social model’s conceptualization of disability is hospitable to rights, because it opens up the possibility that there are duties that correlate with disability rights. Under the social model, disability is a condition that can be eliminated by the removal of social, structural, and attitudinal barriers. Accordingly, the social model dispels the idea that the actions of others towards disabled people will have a marginal impact on their interests in not being disabled. Equally important, the social model refutes the idea that in order to significantly serve people's interest in not being disabled, it is necessary to cure bodily impairments, which is not always possible. As rights correlate with duties that are possible to comply with, as well as those that significantly serve the interests of the right holders, the social model’s conceptualization of disability invites the reframing of problems related to disability in terms of infringements of disability rights. A possible objection to the paper’s argument is raised, according to which the social model is at odds with the invocation of disability rights because disability rights are ineffective in realizing the social model's goal of improving the lives of disabled by eliminating disability. The paper responds to this objection by drawing a distinction between ‘moral rights,’ which, conceptually, are not subject to criticism of ineffectiveness, and ‘legal rights’ which are.

Keywords: disability rights, duties, moral rights, social model

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Authors: Zarish Jawad, Nikita Chugh, Karina Dadar

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Introduction: This paper aims to identify barriers indigenous women face in accessing prenatal care in Canada. It explores the differences in prenatal care received between indigenous and non-indigenous women. The objective is to look at changes or programs in Canada's healthcare system to reduce barriers to accessing safe prenatal care for indigenous women. Methods: A literature search of 12 papers was conducted using the following databases: PubMed, Medline, OVID, Google Scholar, and ScienceDirect. The studies included were written in English only, including indigenous females between the age of 19-35, and review articles were excluded. Participants in the studies examined did not have any severe underlying medical conditions for the duration of the study, and study designs included in the review are prospective cohort, cross-sectional, case report, and case-control studies. Results: Among all the barriers Indigenous women face in accessing prenatal care, the three most significant barriers Indigenous women face include a lack of culturally safe prenatal care, lack of services in the Indigenous community, proximity of prenatal facilities to Indigenous communities and costs of transportation. Discussion: The study found three significant barriers indigenous women face in accessing prenatal care in Canada; the geographical distribution of healthcare facilities, distrust between patients and healthcare professionals, and cultural sensitivity. Some of the suggested solutions include building more birthing and prenatal care facilities in rural areas for indigenous women, educating healthcare professionals on culturally sensitive healthcare, and involving indigenous people in the decision-making process to reduce distrust and power imbalances. Conclusion: The involvement of indigenous women and community leaders is important in making decisions regarding the implementation of effective healthcare and prenatal programs for indigenous women. However, further research is required to understand the effectiveness of the solutions and the barriers that make prenatal care less accessible for indigenous women in Canada.

Keywords: indigenous, maternal health, prenatal care, barriers

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Authors: Jaishree Ellis

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The United States Centers for Disease Control tells us that many women with disabilities will not receive regular health screenings, including Pap Smears and mammograms. This article was comprised and written to recognize the barriers to care, gaps in existing healthcare implementation, and viable methodologies for the provision of comprehensive and robust gynecologic care for women with disabilities. According to the World Health Organization, 15% of the world's population, or approximately 1 billion people, have disabilities, most of whom are identified as women. Women with disabilities are described as being multi-disabled, as in some places, they suffer exclusion because of their disabilities as well as their gender. The paucity of information regarding how to create a healthcare system that is inclusive of every woman, regardless of her type of disability (physical, mental, intellectual or medical), has made it challenging to establish an environment that makes it possible for individuals to access care in an equitable, respectful and comprehensive way. A review of the current literature, institutional websites within the United States and American resource guides was implemented to determine where comprehensive models of care for women with disabilities exist, as well as the modalities that are being employed to meet their healthcare needs. The many barriers to care that women with disabilities face were also extracted from various sources within the literature to provide an exhaustive list that can be tackled, one by one. Of the 637 Hospital Systems in the United States, only 7 provide website documentation of health care services that address the unique needs of women with disabilities. The presumption is that if institutions have not marketed such interventions to the community, then it is likely that they do not have a robust suite of services with which to make gynecologic care available to patients with disabilities. Through this review, 7 main barriers to comprehensive gynecologic care were identified, with more than 20 sub-categories existing within those. As with many other areas of community life, inclusion remains lacking in the delivery of healthcare for women with disabilities. There are at least 7 barriers that must be overcome in order to provide equity in the medical office, the exam room, the hospital and the operating room. While few institutions have prioritized this, those few have provided blueprints that can easily be adopted by others. However, as the general population lives longer and ages, the incidence of disabilities increases, as do the healthcare disparities surrounding them. Further compounded by this is a lack of formal education for medical providers in the United States.

Keywords: health equity, inclusion, healthcare disparities, education

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Authors: Olutayo Stephen Shodipo

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This paper explores how individuals with disabilities understand and express their spirituality like everyone else can help provide church ministers and religious leaders with new knowledge of human experience and change the way pastoral care ministry is being practiced with this population. Disability literature has revealed studies on various aspects of disability. However, on the spirituality of people with disabilities, there is a gap. This paper offers a brief overview of what has been studied on the spiritual needs of adults with developmental disabilities (ADDs) and the church and the gap that still exists. Along with explaining this gap, it considers the reality of ADDs’ spiritual needs and why the church needs to validate their spirituality and religious expressions and create an inclusive environment where their spiritual experience and expressions can be enhanced and supported. This paper, then, aims to explore the diverse spiritual experiences of ADDs in faith communities, and their theological, moral, and social implications for Pastoral care ministry practices.

Keywords: spirituality, inclusive ministry, pastoral theology, developmental disability, pastoral care

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Authors: Aidan Jacobsen, Morgan Motia, David Sam, Jonathan Mudge

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Background: The Centers for Disease Control (CDC) lists vaccine requirements for children under two years old to correlate with development markers. CDC lists the coverage by age 24 months to be at least 90% nationally and 84% for Rhode Island Blackstone Valley Community Health Center (BVCHC) in Central Falls, Rhode Island, currently has a completed vaccination rate of 51% for children by the age of 24 months. Current barriers to care for up to date well child vaccinations include lack of transportation, parental work, childcare, and other social stressors. Objective: Increase the vaccination rate of children under the age of 24 months at BVCHC. Conduct a literature review to identify the common barriers preventing children under 24 months from receiving vaccinations. Reduce the barriers to expand access to vaccination care for infants Methods: Setting: Blackstone Valley Community Health Center, Pawtucket, RI Participants: (n=41), Patients between the age of 20-24 months, not up to date with the CDC vaccination recommendations and without a future appointment. QI Intervention: Patients were contacted via phone and offered an appointment during extra Saturday clinic hours in order to receive up to date vaccine care. A Saturday vaccine clinic was established specifically for patients in need of vaccines and having identified barriers to care. Conclusions: Expanding clinic hours and targeting non vaccine up –to-date patients can increase the current standard of childhood immunizations at BVCHC. Overcoming barriers preventing childhood immunization can improve access to providing up to date vaccinations. Other barriers still deter from reaching the national standard of immunizations rates.

Keywords: vaccinations, well child care, barriers to care, social determinants of health

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Authors: Ali Aldakhil

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This paper explores the many faces of the barriers and exclusionary attitudes and practices that disabled teachers and students experience in a school where they teach or attend. Critical disability studies and inclusive education theory were used to conceptualise this inquiry and ground it in the literature. These theories were used because they magnify and expose the problems of disability/disablism as within-society instead of within-individual. Similarly, disability-first language was used in this study because it seeks to expose the social oppression and discrimination of disabled. Data were generated through conducting in-depth semi-structured interviews with six disabled teachers who teach disabled children in a Saudi mainstream school. Thematic analysis of data concludes that the school is fettered by disabling barriers, attitudes, and practices, which reflect the dominant culture of disablism that disabled people encounter in the Saudi society on a daily basis. This leads to the conclusion that overall deconstruction and reformation of Saudi mainstream schools are needed, including non-disabled people’s attitudes, policy, spaces, and overall arrangements of teaching and learning.

Keywords: disablism, disability studies, mainstream schools, Saudi Arabia

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Authors: Stephanie Giordano, Eric Lam, Rosa Plasencia

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An important piece of active aging is ensuring people have the right support to meet individual needs. Using NCI-AD data, we will look at measures of satisfaction with community access and needed services among people with physical disabilities receiving LTSS in the US. National Core Indicators—Aging and Disabilities (NCI-AD) is a voluntary effort by State Medicaid, aging, and disability agencies across the US to measure and track their own performance. NCI-AD uses a standardized survey – the Adult Consumer Survey (ACS), to hear directly from people receiving services about the quality of services and supports they receive. Data from the 2018-19 ACS found that compared to people without a physical disability, those with a physical disability were more likely to make choices about the services they receive, including when and how often they receive those services. Yet people with a physical disability were less likely to report they get enough assistance with everyday activities (e.g., shopping, housework, and taking medications) and self-care (e.g., dressing or bathing) and more likely to report that services and supports do not fully meet their needs and goals. A further breakdown by age shows that people 40-65 years old with a physical disability experienced even greater barriers to being as active in the community as they would like to be, indicating a need to better support people as they age with or into a disability. We will explore how these and other outcomes were affected by COVID-19, take a closer look at outcomes by demographics (e.g., race/ethnicity, gender, and mental health diagnoses) and discuss implications on the future needs of service systems.

Keywords: quality-of-life, long-term services and supports, person-centered, community

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Authors: Chimuanya Osuji, Kido Uyamasi, Morgan Bradley

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Introduction: Obesity is a major risk factor for many chronic diseases, with higher rates occurring among certain populations. Even though disparities in obesity rates exist for those with disabilities, few studies have assessed the association between disability and obesity status. This study aims to examine the association between type of disability and obesity status among US adults during the Covid-19 pandemic (2019-2021). Methods: Data for this cross-sectional study was obtained from the 2019, 2020 and 2021 NHIS. Multinomial logistic regressions were used to assess the relationship between each type of disability and obesity status (reference= normal/underweight). Each model adjusted for demographic, health status and health-related quality of life variables. Statistical analyses were conducted using SAS version 9.4. Results: Of the 82,632 US adults who completed the NHIS in 2019, 2020, and 2021. 8.9% (n= 7,354) reported at least 1 disability-related condition. Respondents reported having a disability across vision (1.5%), hearing (1.5%), mobility (5.3%), communication (0.8%), cognition (2.4%) and self-care (1.1%) domains. After adjusting for covariates, adults with at least 1 disability-related condition were about 30% more likely to have moderate-severe obesity (AOR=1.3; 95% CI=1.11, 1.53). Mobility was the only disability category positively associated with mild obesity (AOR=1.16; 95% CI=1.01, 1.35) and moderate/severe obesity (AOR=1.6; 95% CI=1.35, 1.89). Individuals with vision disability were about 35% less likely to have mild obesity (AOR=0.66; 95% CI=0.51, 0.86) and moderate-severe obesity (AOR=0.66; 95% CI= 0.48, 0.9). Individuals with hearing disability were 28% less likely to have mild obesity (AOR=0.72; 95% CI= 0.56, 0.94). Individuals with communication disability were about 30% less likely to be overweight (AOR=0.66; 95% CI=0.47, 0.93) and 50% less likely to have mild obesity (AOR=0.45; 95% CI= 0.29, 0.71). Individuals with cognitive disability were about 25% less likely to have mild obesity and about 35% less likely to have moderate-severe obesity. Individuals with self-care disability were about 30% less likely to be overweight. Conclusion: Mobility-related disabilities are significantly associated with obesity status among adults residing in the United States. Researchers and policy makers should implement obesity intervention methods that can address the gap in obesity prevalence rates among those with and without disabilities.

Keywords: cognition, disability, mobility, obesity

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Authors: Mafunda Esther

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The paper seeks to find out and document the impact of culture and religion on disability, specifically language impairment and health care seeking practices of the Shona people. Its main objectives are to explore the cultural and religious beliefs that affect the utilization of rehabilitation services in a rural community in Zimbabwe. The other objective of the paper is to describe how language impairment is presented and understood by people living in a Zimbabwean rural area. The research is qualitative interpretive phenomenological research, and it utilizes the case study approach using semi structured interviews and focus group discussions. Results from the research established that religious and cultural beliefs determine how the Shona people view disability, and this guides their health care seeking practices. The research is important since communication disorders occur in populations worldwide though they are not always recognized as such. The lack of recognition of and the attitudes toward speech and languages disorders, as well as the beliefs about the causes of such disorders, affect people's attitudes toward the treatment of the disorders.

Keywords: culture, religion, disability, language impairment

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Authors: Sharmila Rathee

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Individuals with disability/ies often face negative attitudes, discrimination, exclusion, and inequality of treatment due to stigmatization and stigmatized treatment. While a significant number of studies in field of stigma suggest that group-identification has positive consequences for stigmatized individuals, ironically very miniscule empirical work in sight has attempted to investigate in-group identification as a coping measure against stigma, humiliation and related experiences among disability group. In view of death of empirical research on in-group identification among disability group, through present work, an attempt has been made to examine the experiences of stigma, humiliation, and in-group identification among disability group. Results of the study suggest that use of in-group identification as a coping strategy is not uniform across members of disability group and degree of in-group identification differs across different sub-groups of disability groups. Further, in-group identification among members of disability group depends on variables like degree and impact of disability, factors like onset of disability, nature, and visibility of disability, educational experiences and resources available to deal with disabling conditions.

Keywords: disability, stigma, in-group identification, social identity

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Authors: Liam Martin, Martha Watson

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Patients with learning disabilities (LD) are at increased risk of physical and mental illness due to health inequality. To address this, NICE recommends that people from the age of 14 with a learning disability should have an annual LD health check. This consultation should include a holistic review of the patient’s physical, mental and social health needs with a view of creating an action plan to support the patient’s care. The expected standard set by the Quality and Outcomes Framework (QOF) is that each general practice should review at least 75% of their LD patients annually. During COVID-19, there have been barriers to primary care, including health anxiety, the shift to online general practice and the increase in GP workloads. A surgery in North London wanted to assess whether they were falling short of the expected standard for LD patient annual reviews in order to optimize care post Covid-19. A baseline audit was completed to assess how many LD patients were receiving their annual reviews over the period of 29th September 2020 to 29th September 2021. This information was accessed using EMIS Web Health Care System (EMIS). Patients included were aged 14 and over as per QOF standards. Doctors were not notified of this audit taking place. Following the results of this audit, the creation of learning disability clinics was recommended. These clinics were recommended to be on the ground floor and should be a dedicated time for LD reviews. A re-audit was performed via the same process 6 months later in March 2022. At the time of the baseline audit, there were 71 patients aged 14 and over that were on the LD register. 54% of these LD patients were found to have documentation of an annual LD review within the last 12 months. None of the LD patients between the ages of 14-18 years old had received their annual review. The results were discussed with the practice, and dedicated clinics were set up to review their LD patients. A second pass of the audit was completed 6 months later. This showed an improvement, with 84% of the LD patients registered at the surgery now having a documented annual review within the last 12 months. 78% of the patients between the ages of 14-18 years old had now been reviewed. The baseline audit revealed that the practice was not meeting the expected standard for LD patient’s annual health checks as outlined by QOF, with the most neglected patients being between the ages of 14-18. Identification and awareness of this vulnerable cohort is important to ensure measures can be put into place to support their physical, mental and social wellbeing. Other practices could consider an audit of their annual LD health checks to make sure they are practicing within QOF standards, and if there is a shortfall, they could consider implementing similar actions as used here; dedicated clinics for LD patient reviews.

Keywords: COVID-19, learning disability, learning disability health review, quality and outcomes framework

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Authors: Magdalena Hasplova, Katerina Ivanova

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Perinatal palliative care is a relatively young and developing field that includes the care of a fetus or newborn with a life-threatening or limiting defect and his family. However, the training of midwives in perinatal palliative care is insufficient and midwives do not feel prepared for this aspect of their work. This fact can affect the barriers to communication with the mother or family of the endangered child. The main aim was to analyze the awareness of midwifery students on the issue of perinatal palliative care in the Czech Republic. Based on the analysis, draw attention to possible communication barriers that may be caused by insufficient information. The research was carried out using a qualitative method, the method of data collection was a semi-structured interview. Eleven female students took part in the research, and the respondents were selected using the Snowballing method. Some methods of grounded theory (open coding and category creation) were used to analyze the data. Based on the results of the research, questions were set in a questionnaire focused on communication barriers between mothers (family) and health care professionals in the care of newborns with life-threatening or limiting disabilities. Based on the analysis of data, categories 1 were determined. Knowledge of perinatal palliative care 2. Education 3. Practical experience 4. Readiness and concerns in the provision of perinatal palliative care 6. Supervision. The questions in the questionnaire were then derived taking into account the data obtained, and the operationalization of health literacy in the field of perinatal palliative care was performed. The analysis of the interviews revealed that the education of midwives in the Czech Republic in the issue of perinatal palliative care is not uniform. The research confirmed the insufficient knowledge and skills of midwifery students preparing to provide perinatal palliative care. Respondents reported feelings of unpreparedness in the areas of communication with a woman after perinatal loss, psychological support for a woman and her family, the care of a stillborn or dying child, or self-coping with death. The questions in the questionnaire then develop these areas. We assumed that by analyzing and interpreting the data obtained from our research, we will help to better understand the concerns and motivations of students in providing holistic perinatal palliative care. We came to the conclusion that it would be appropriate to set up a unified and comprehensive education on this issue in the Czech Republic. Healthcare professionals are in a unique position that can positively or negatively affect the intensity of perinatal loss. Already properly set up education of health professionals leads to overcoming barriers in communication between health professionals and the family, experiencing perinatal loss.

Keywords: midwife, perinatal loss, perinatal palliative care, communication, barriers, mothers, family

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Authors: J. Dutton, L. Knight

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Achieving quality and respectful maternal health care is part of the global agenda to improve reproductive health and achieve universal reproductive rights. Barriers to quality of care in South African maternal health facilities exist at both systemic and individual levels. Addition to this, the normalization of gender violence within South Africa has a large impact on people seeking health care as well as those who provide care within health facilities. The hierarchical environment of South Africa’s public health system penalizes both patients and providers who battle to assume any assessable power. This paper explores how systemic and individual level barriers to quality of care affect the midwifery profession within South African maternal health services and create, at times, an environment of enmity rather than care. This paper analyzes and discusses the data collected from in-depth, semi-structured interviews with nurses and midwives at three maternal health facilities in South Africa. This study has taken a holistic approach to understand the realities of nurses and midwives in order to explore the ways in which experience informs their practice and treatment of pregnant women. Through collecting and analyzing narratives, linkages between nurses and midwives day-to-day and historical experiences and disrespectful care have been made. Findings from this study show that barriers to quality of care take form in complex and interrelated ways. The physical structure of the health facility, human resource shortages, and the current model of maternal health care, which often lacks a person-centered approach, is entangled within personal beliefs and attitudes of what it means to be a midwife to create an environment that is often not conducive to a positive birthing experience. This entanglement sits within a society of high rates of violence, inequality, and poverty. Having teased out the nuances of each of these barriers and the multiple ways they reinforce each other, the findings of this paper demonstrate that birth, and the work of a midwife, are situated in a mode of discipline and punishment within this context. For analytical purposes, this paper has broken down the individual barriers to quality care and discusses the current and historical significance before returning to the interrelated forms in which barriers to quality maternal health care manifest. In conclusion this paper questions the role of agency in the ability to subvert systemic barriers to quality care and ideas around shifting attitudes and beliefs of and about midwives. International and local policies and guidelines have a role to play in realizing such shifts, however, as this paper suggests, when policy does not speak to the local context there is the risk of it contributing to frustrations and impeding the path to quality and respectful maternal health care.

Keywords: disrespect and abuse in childbirth, midwifery, South African maternal health care, quality of care

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Authors: Taiwo Hassanat Bawa-Muhammad, Opeoluwa Hope Adegoke

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Introduction: This study aims to examine the knowledge and perceptions of preconception care among healthcare workers in Nigeria, recognizing its crucial role in ensuring safe pregnancies. Despite its significance, awareness of preconception care remains low in the country. The study seeks to assess the understanding of preconception services and identify the barriers that hinder their efficacy. Methods: Through semi-structured interviews, 129 healthcare workers across six states in Nigeria were interviewed between January and March 2023. The interviews explored the healthcare workers' knowledge of preconception care practices, the socio-cultural influences shaping decision-making, and the challenges that limit accessibility and utilization of preconception care services. Results: The findings reveal a limited knowledge of preconception care among healthcare workers, primarily due to inadequate information dissemination within the healthcare system. Additionally, cultural beliefs significantly influence perceptions surrounding preconception care. Furthermore, financial constraints, distance to healthcare facilities, and poor health infrastructure disproportionately restrict access to preconception services, particularly for vulnerable populations. The study also highlights insufficient skills and outdated training among healthcare workers regarding preconception guidance, primarily attributed to limited opportunities for professional development. Discussion: To improve preconception care in Nigeria, comprehensive education programs must be implemented, taking into account the societal influences that shape perceptions and behaviors. These programs should aim to dispel myths and promote evidence-based practices. Additionally, training healthcare workers and integrating preconception care services into primary care settings, with support from religious and community leaders, can help overcome barriers to access. Strategies should prioritize affordability while emphasizing the broader benefits of preconception care beyond fertility concerns alone. Lastly, widespread literacy campaigns utilizing trusted channels are crucial for effectively disseminating information and promoting the adoption of preconception practices in Nigeria.

Keywords: preconception care, knowledge, healthcare workers, Nigeria, barriers, education, training

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Authors: Farjina Malek, Julie King, Niki Edwards

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Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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Authors: Fatemeh Jafari Hemmat Abadi

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Through empathy, caring, and nurturing, benevolent leaders can help people with disabilities overcome the stigma of disability and smile at their work environment and work. The main purpose of our research is to examine the performance of people with physical disabilities in virtual teams across geographical, cultural and linguistic barriers around the world. Our results show the relationship between benevolent leadership and the three components of well-being among administrative staff, disability including perceived discrimination, job satisfaction and the need for improvement. The two factors identified for productivity are pervasive team attitudes in the team and proper leadership by the team leader.

Keywords: benevolent leadership, virtual teams, group attitudes pervasive, climate including disability

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Authors: Jamie Lee Harder

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In the context of rapidly changing social and economic circumstances in the developing world, this paper analyses access to public healthcare for poor people with disabilities in Cambodia. Like other countries of South East Asia, Cambodia is developing at rapid pace. The historical past of Cambodia, however, has set former social policy structures to zero. This past forces Cambodia and its citizens to implement new public health policies to align with the needs of social care, healthcare, and urban planning. In this context, the role of people with disabilities (PwDs) is crucial as new developments should and can take into consideration their specific needs from the beginning onwards. This paper is based on qualitative research with expert interviews and focus group discussions in Cambodia. During the field work it became clear that the identification tool for the poorest households (HHs) does not count disability as a financial risk to fall into poverty neither when becoming sick nor because of higher health expenditures and/or lower income because of the disability. The social risk group of poor PwDs faces several barriers in accessing public healthcare. The urbanization, the socio-economic health status, and opportunities for education; all influence social status and have an impact on the health situation of these individuals. Cambodia has various difficulties with providing access to people with disabilities, mostly due to barriers regarding finances, geography, quality of care, poor knowledge about their rights and negative social and cultural beliefs. Shortened budgets and the lack of prioritizations lead to the need for reorientation of local communities, international and national non-governmental organizations and social policy. The poorest HHs are identified with a questionnaire, the IDPoor program, for which the Ministry of Planning is responsible. The identified HHs receive an ‘Equity Card’ which provides access free of charge to public healthcare centers and hospitals among other benefits. The dataset usually does not include information about the disability status. Four focus group discussions (FGD) with 28 participants showed various barriers in accessing public healthcare. These barriers go far beyond a missing ramp to access the healthcare center. The contents of the FGDs were ratified and repeated during the expert interviews with the local Ministries, NGOs, international organizations and private persons working in the field. The participants of the FGDs faced and continue to face high discrimination, low capacity to work and earn an own income, dependency on others and less social competence in their lives. When discussing their health situation, we identified, a huge difference between those who are identified and hold an Equity Card and those who do not. Participants reported high costs without IDPoor identification, positive experiences when going to the health center in terms of attitude and treatment, low satisfaction with specific capacities for treatments, negative rumors, and discrimination with the consequence of fear to seek treatment in many cases. The problem of accessing public healthcare by risk groups can be adapted to situations in other countries.

Keywords: access, disability, health, inequality, Cambodia

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Authors: Abbas Sheikhtaheri, Nasim Hashemi

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Health information systems have great benefits for clinical and managerial processes of health care organizations. However, identifying and removing constraints and barriers of implementing and using health information systems before any implementation is essential. Physicians are one of the main users of health information systems, therefore, identifying the causes of their resistance and concerns about the barriers of the implementation of these systems is very important. So the purpose of this study was to determine the barriers of the development and implementation of health information systems in terms of the Iranian physicians’ perspectives. In this study conducted in 8 selected hospitals affiliated to Tehran and Iran Universities of Medical Sciences, Tehran, Iran in 2014, physicians (GPs, residents, interns, specialists) in these hospitals were surveyed. In order to collect data, a research made questionnaire was used (Cronbach’s α = 0.95). The instrument included 25 about organizational (9), personal (4), moral and legal (3) and technical barriers (9). Participants were asked to answer the questions using 5 point scale Likert (completely disagree=1 to completely agree=5). By using a simple random sampling method, 200 physicians (from 600) were invited to study that eventually 163 questionnaires were returned. We used mean score and t-test and ANOVA to analyze the data using SPSS software version 17. 52.1% of respondents were female. The mean age was 30.18 ± 7.29. The work experience years for most of them were between 1 to 5 years (80.4 percent). The most important barriers were organizational ones (3.4 ± 0.89), followed by ethical (3.18 ± 0.98), technical (3.06 ± 0.8) and personal (3.04 ± 1.2). Lack of easy access to a fast Internet (3.67±1.91) and the lack of exchanging information (3.61±1.2) were the most important technical barriers. Among organizational barriers, the lack of efficient planning for the development and implementation systems (3.56±1.32) and was the most important ones. Lack of awareness and knowledge of health care providers about the health information systems features (3.33±1.28) and the lack of physician participation in planning phase (3.27±1.2) as well as concerns regarding the security and confidentiality of health information (3.15 ± 1.31) were the most important personal and ethical barriers, respectively. Women (P = 0.02) and those with less experience (P = 0.002) were more concerned about personal barriers. GPs also were more concerned about technical barriers (P = 0.02). According to the study, technical and ethics barriers were considered as the most important barriers however, lack of awareness in target population is also considered as one of the main barriers. Ignoring issues such as personal and ethical barriers, even if the necessary infrastructure and technical requirements were provided, may result in failure. Therefore, along with the creating infrastructure and resolving organizational barriers, special attention to education and awareness of physicians and providing solution for ethics concerns are necessary.

Keywords: barriers, development health information systems, implementation, physicians

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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