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Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

Disability inclusion in the Western Balkans and Eastern Partnership countries. Disability Inclusion Helpdesk Report No: 51.

CORBY, Nick
CLUGSTON, Naomi
September 2020

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This briefing note provides guidance on how to incorporate disability inclusion within economic and governance reform projects. It is intended to inform the UK Foreign, Commonwealth and Development Office’s (FCDO) Good Governance Fund (GGF). This Note provides basic, introductory guidance on disability inclusion to FCDO advisers and managers engaging with economic and governance reform and sets out opportunities for the FCDO’s programmes and policy dialogue to deliver positive impacts for people with disabilities. The Note addresses three key questions: 2 1. What is the broad status of the rights of people with disabilities in GGF countries and are there any significant differences between the countries? 2. What are the recommended entry points for incorporating disability inclusion within economic and governance reform projects within the five GGF thematic areas? 3. How should the GGF incorporate disability inclusion into the next business case?

 

An annex provides short notes on several factors for each country. The factors are: the legal framework; disability prevalence; economic inclusion; social inclusion; institutionialisation; access to justice; receptions and representation in the media.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

What interventions are effective to support home-based carers?

HUNT, Xanthe
August 2019

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Question & problem

Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia

TORO-HERNÁNDEZ, María Luisa
MONDRAGÓN-BARRERA, Mónica Alejandra
TORRES-NARVÁEZ, Martha Rocío
VELASCO-FORERO, Sandra Esperanza
GOLDBERG, Mary
2019

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Purpose: 

Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.

 

Materials and methods: 

Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.

 

Results and conclusions

One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

KHAYATZADEH,-MAHANI, Akram
WITTEVRONGEL, Krystle
NICHOLAS, David B
ZWICKER, Jennifer D
July 2018

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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.

 

Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.

 

Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.

 

Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.

 

Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.

 

Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.

 

Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.

Parent peer advocacy, information and refusing disability discourses

BELL, M
FITZGERALD, R
LEGGE, M
2013

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Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

A Comparative Analysis of Institutional Capacities for Implementing Disability Policies in East African Countries: Functions of National Councils for Disability

YOKOYAMA, A
2012

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During the “African Decade of Persons with Disabilities (2000-2009)”, East African countries witnessed significant achievements, especially in the development of law, collection of statistics and in funding. However, many persons with disability are still marginalised from opportunities in education, healthcare and employment.

 

Purpose: With the pre-supposition that the lack of institutional capacities for implementing disability policies is the one major stumbling-block which hinders widespread delivery of social services to persons with disabilities in low-income countries, this study makes a comparative analysis of institutional capacities in the disability sectors of Uganda, Kenya and Tanzania.

 

Method: The research methods adopted were a literature survey and a field survey. The framework for analysis consists of: 1) capacities and functions of disability units in central governments, 2) relationships between central and local governments in the disability sector, and 3) relationships between governments and organisations of persons with disability (DPOs). Special attention is paid to the status, roles and functions of national councils for disability (NCDs), the independent statutory bodies recently established in each of the three countries, with clear authority and duties for the implementation of disability policies. The NCDs enable multi-sectoral stakeholders to be involved in the implementation of disability policies; therefore, positive relationships between the governments and DPOs are essential for the smooth functioning of the NCDs.

 

Results: While the result of the field survey in Tanzania reveals several effective approaches for the smooth operation of the NCD, further study is needed to verify whether these approaches would be applicable to other East African countries such as Kenya and Uganda.

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