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“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Disability, deadly discourse, and collectivity amid Coronavirus (COVID-19)

ABRAMS, Thomas
ABBOTT, David
June 2020

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As COVID-19 crosses the globe, disabled people are subject to new medical and discursive realities. Focusing on the consequences of the latter, we utilize news reports from Canada and the UK to argue the current language of pre-existing conditions represents disability as non-life, explaining away the material realities facing disabled persons. This language ignores the distribution of care work in our societies, poverty, and other forms of exclusion facing disabled people and the population more generally. Work on ventilator users points to these existing inequalities, obscured as they may be. This story is not new. Outlining existing narratives within disability studies challenging disability as deadly biological and economic deficiency and situating the ‘pre-existing’ terminology therein, we look to work in disability studies and bioethics to challenge the disability–death equation. We end reviewing counter-narratives by and for disabled people, highlighting the ongoing and life-affirming resistance throughout the disability rights movement.

 

Scandinavian Journal of Disability Research, 22(1), pp.168–174.

DOI: http://doi.org/10.16993/sjdr.732

COVID19: Self-advocacy organisations' strategies and response

Inclusion International
May 2020

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Some strategies for dealing with COVID-19 employed by contributing self-advocacy organisations are discussed. Five panellists talk about work in their own countries, presenting and sharing knowledge, experiences and resources for all self-advocates everywhere.

#COVIDdisability: Disability-related resources for families

CANADIAN ASSOCIATION FOR COMMUNITY LIVING (CACL)
2020

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A series of disability-related resources related to the COVID-19 pandemic for people with intellectual disabilities and their families.

 

Topics include:

  • Trusted COVID-19 Information
  • Plain Language Information
  • COVID-19 and Discrimination 
  • Information for Caregivers
  • COVID-19 and Government Support
  • COVID-19 and Mental Health
  • Accessible Information on COVID-19
  • Emergency Preparedness and People with a Disability

Summary Report. LEAVE NO CHILD BEHIND Invest in the early years

WALKER, Jo
BABOO, Nafisa
September 2019

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A summary overview of the findings of a study led by LIGHT FOR THE WORLD with its partners, supported by the Early Childhood Program of the Open Society Foundations. The aim of the study was to uncover the trends in aid for inclusive Early Child Development (ECD) for 2017. It further identified strategic commitments to ECD, as reflected in policy documents up until 2019. The research examined donors’ spending and commitments in three key areas: early childhood development; inclusive early education and pre-primary; and disability-inclusive early childhood development investments in the sectors of health, nutrition, education and sanitation.

 

This study presents a baseline on donor investment in ECD services in low- and middle-income countries for the children who are traditionally left behind. It draws lessons from six bilateral donor countries – Belgium, Canada, France, Germany, the United Kingdom (UK) and the United States (US) – as well as the Global Partnership for Education (GPE), European Union (EU) Institutions, the United Nations Children’s Fund (UNICEF) and the World Bank. Donor advocacy briefs for each of these donors are provided.

 

The study focuses on donor contributions to scaling up ECD services in four African countries: Burkina Faso, Mozambique, Zambia and Zimbabwe

Every learner matters: Unpacking the learning crisis for children with disabilities

McCLAIN-NHLAPO, Charlotte
et al
June 2019

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This paper was developed by the World Bank in partnership with Leonard Cheshire and Inclusion International. It is an attempt to add knowledge to the current understanding of the importance of learning achievements, with a focus on children with disabilities. While the premise is that inclusive education refers to the inclusion of all children, the focus of this paper is on children with disabilities.

The aim of the paper is to:

  • Provide an evidence-based review of educational participation of children with disabilities.
  • Establish a case for focusing on learning achievements for students with disabilities.
  • Take stock of current mechanisms of measurement of learning outcomes and review their inclusivity.
  • Explore evidence of practice and systems which promote disability-inclusive learning for all. 

Four case studies are provided - from Pakistan, South Africa, Canada and UK.

Patient and caregiver experiences on care transitions for adults with a hip fracture: a scoping review

ASIF, Maliha
CADEL, Lauren
KULUSKI, Kerry
EVERALL, Amanda C
GUILCHER, Sara J T
May 2019

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Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.

 

Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.

 

Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.

 

Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.

The micro-politics of caring: tinkering with person-centered rehabilitation

GIBSON, BARBARA
TERRY, Gareth
SETCHELL, Jenny
BRIGHT, Felicity A S
CUMMINS, Christine
KAYES, Nicola M
April 2019

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Purpose: In this paper, we critically investigate the implementation of person-centered care with the purpose of advancing philosophical debates regarding the overarching aims and delivery of rehabilitation. While general agreement exists regarding person centered care’s core principles, how practitioners reconcile the implementation of these principles with competing practice demands remains an open question.

 

Materials and methods: For the paper, we drew on post-qualitative methods to engage in a process of “diffractive” analysis wherein we analyzed the micro-doings of person-centered care in everyday rehabilitation work. Working from our team members’ diverse experiences, traditions, and epistemological commitments, we engaged with data from nine “care events” generated in previous research to interrogate the multiple forces that co-produce care practices.

 

Results: We map our analyses under three categories: scripts mediate practice, securing compliance through “benevolent manipulations”, and care(ful) tinkering. In the latter, we explore the notion of tinkering as a useful concept for approaching person centered care. Uncertainty, humility, and doubt in one’s expertise are inherent to tinkering, which involves a continual questioning of what to do, what is best, and what is person centered care within each moment of care. The paper concludes with a discussion of the implications for rehabilitation and person-centered care.

Funding and inclusion in higher education institutions for students with disabilities

CHIWANDIRE, Desiree
VINCENT, Louise
2019

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Background: Historically, challenges faced by students with disabilities (SWDs) in accessing higher education institutions (HEIs) were attributed to limited public funding. The introduction of progressive funding models such as disability scholarships served to widen access to, and participation in, higher education for SWDs. However, recent years have seen these advances threatened by funding cuts and privatisation in higher education.

 

Objectives: In this article, the funding mechanisms of selected developed and developing democratic countries including the United Kingdom, the United States, Canada, Australia, South Africa and India are described in order to gain an insight into how such mechanisms enhance access, equal participation, retention, success and equality of outcome for SWDs. The countries selected are often spoken about as exemplars of best practices in relation to widening access and opportunities for SWDs through government mandated funding mechanisms. Method: A critical literature review of the sample countries’ funding mechanisms governing SWDs in higher education and other relevant government documents; secondary academic literature on disability funding; online sources including University World News, University Affairs, newspaper articles, newsletters, literature from bodies such as the Organisation for Economic Co-operation and Development, Disabled World and Parliamentary Monitoring Group. Data were analysed using a theoretically derived directed qualitative content analysis.

 

Results: Barriers which place SWDs at a substantial educational disadvantage compared to their non-disabled peers include bureaucratisation of application processes, cuts in disability funding, means-test requirements, minimal scholarships for supporting part-time and distance learning for SWDs and inadequate financial support to meet the day-to-day costs that arise as a result of disability.

 

Conclusion: Although the steady increase of SWDs accessing HEIs of the sampled countries have been attributed to supportive disability funding policies, notable is the fact that these students are still confronted by insurmountable disability funding-oriented barriers. Thus, we recommend the need for these HEIs to address these challenges as a matter of urgency if they are to respect the rights of SWDs as well as provide them with an enabling environment to succeed academically.

 

African Journal of Disability, Vol 8, 2019

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

2030 Agenda for sustainable development: Selected SDG indicators disaggregated by disability status

WASHINGTON GROUP ON DISABILITY STATISTICS
October 2018

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In light of the importance of disability data collection and the disaggregation of Sustainable Development Goal (SDG) outcome indicators by disability status, the Washington Group on Disability Statistics (WG) undertook an exercise to review, among WG member countries, the extent to which data on SDG indicators currently available can be disaggregated by disability status. Requests for disaggregated SDG data for 13 selected indicators were sent to 146 member countries. 48 countries responded and 39 provided data. Response data is tabulated and discussed.

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.

Association between social factors and performance during Functional Capacity Evaluations: a systematic review

ANSUATEGUI ECHEITA, Jone
VAN HOLLAND, Berry J
GROSS, Douglas P
KOOL, Jan
OESCH, Peter
TRIPPOLINI, Maurizio
RENEMAN, Michiel F
March 2018

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Purpose: Determine the association of different social factors with Functional Capacity Evaluation (FCE) performance in adults.

 

Materials and methods: A systematic literature search was performed in MEDLINE, CINAHL, and PsycINFO electronic databases. Studies were eligible if they studied social factor’s association with the performance of adults undergoing FCE. Studies were assessed on methodological quality and quality of evidence. The review was performed using best-evidence synthesis methods.

 

Results: Thirteen studies were eligible and 11 social factors were studied. Considerable heterogeneity regarding measurements, populations, and methods existed among the studies. High quality of evidence was found for the association of FCE performance with the country of FCE and examiner’s fear behavior; moderate quality of evidence with previous job salary; and low or very low quality of evidence with compensation status, litigation status, type of instruction, time of day (workday), primary or mother language, and ethnicity. Other social factors were not studied.

 

Conclusions: Evidence for associations of various social factors with FCE performance was found, but robust conclusions about the strength of the associations cannot be made. Quality of evidence ranged from high to very low. Further research on social factors, also within a biopsychosocial context, is necessary to provide a better understanding of FCE performance.

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Disability & the Global South (DGS), 2018, Vol. 5 No. 2 - Special issue: Intersecting Indigeneity, Colonisation and Disability

2018

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Articles include:

  • Editorial: Intersecting Indigeneity, colonialisation and disability
  • Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’
  • Audiology and Speech-Language Pathology: Practitioners’ Reflections on Indigeneity, Disability and Neo-Colonial Marketing
  • ‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating Intersections of Indigenousness, Disability and Gender in Labrador
  • Disabling Bodies of/and Land: Reframing Disability Justice in Conversation with Indigenous Theory and Activism
  • The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand
  • Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter
  • ‘Black on the inside’: albino subjectivity in the African novel
  • The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences
  • An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory
  • Inclusion of marginalised Aboriginal and Torres Strait Islander Peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

 

‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating intersections of indigenousness, disability and gender in Labrador

STIENSTRA, Deborah
BAIKIE, Gail
MANNING, Susan
2018

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Drawing from qualitative research and over five years of relationship-building with women in Labrador, Canada, this article explores the intersections of Indigenousness, disability and gender. Labrador offers a unique perspective with its three Indigenous nations, including one Indigenous self-government and settler populations; its remote and Northern location; and its long history as a site for resource exploitation, global military presence and colonial displacements. We explore how these features shape the experiences of women with disabilities, including in rejecting the label of ‘disability’ and finding spaces in their communities of both inclusion and exclusion. Understanding the experiences of women with disabilities in Labrador requires recognizing the disabling consequences of colonization and the fast-track urbanization that has accompanied resource development in the region. We highlight some Indigenous models of inclusion that are already working and can provide an opportunity for service providers, governments and those living in communities to learn from them.

 

Disability and the Global South, 2018, Vol.5, No. 2

National approaches to promote sports and physical activity in adults with disabilities: examples from the Netherlands and Canada

HOEKSTRA, Femke
ROBERTS, Lynn
VAN LINDERT, Caroline
MARTIN GINIS, Kathleen A
VAN DER WOUDE, Lucas H V
MCCOLL, Mary Ann
January 2018

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Purpose: This study described how the Dutch and Canadian governments promote high performance sports, recreational sports, and physical activity (PA) among adults with disabilities on a national level.

 

Methods: An internet-based study was conducted to identify and select relevant documents and websites containing information about the national approach to promote disability sports and physical activities in the Netherlands and Canada.

 

Results: Both governments promote high performance sports in similar ways, but use different strategies to promote recreational sports and physical activities. The Dutch approach is characterized by using time-limited programs focusing on enhancement of sports infrastructure and inter-sector collaboration in which municipalities have key roles. The Canadian government promotes recreational sports in disabled populations by supporting programs via bilateral agreements with provinces and territories. Furthermore, the level of integration of disability sports into mainstream sports differs between countries.

 

Conclusions: The findings of this study may inspire policy makers from different countries to learn from one another’s policies in order to optimize national approaches to promote disability sports and PA on all levels.

Expanding the circle: monitoring the human rights of indigenous, first nations, aboriginal, Inuit and Métis people with disabilities in Canada

RIOUX Marcia
November 2016

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Expanding the Circle is a project undertaken by Disability Rights Promotion International (DRPI) that focuses on expanding the conversation about what access to human rights looks like for Indigenous, First Nations, Aboriginal, Inuit and Métis people with disabilitiesin Canada. DRPI has engaged indigenous peoples in many of its projects including New Zealand and Bolivia. It is important that the Canadian indigenous experience be added to this search for knowledge where the rights of people have been neglected. Indigenous, First Nations, Aboriginal, Inuit and Métis people experience disproportionately high levels of disability compared to other Canadians. Indigenous, First Nations, Aboriginal, Inuit and Métis people with disabilities historically, and at present, experience exclusion and various forms of discrimination. This discrimination may take place at the level of individual interactions, but people may also experience discrimination at a higher, systemic level, by their needs not properly being addressed in laws, policies and budgets. This project uses an intersectional point of view, to understand the experiences of people with disabilities who are also Indigenous, First Nations, Aboriginal, Inuit and Métis and considers the unique challenges and victories this population experiences in accessing rights. 

 

Expanding the Circle considers the rights outlined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), in conversation with the United Nations Declaration on the Rights of Indigenous People (UNDRIP). International human rights legislation not only focuses on specific rights, but also highlights five general human rights principles. These key principles: dignity; autonomy; participation, inclusion and accessibility; non-discrimination and equity; and respect for difference were considered in relation to areas of people’s lives: social participation; health; education, work and privacy and family life, information & communications; access to justice; and income security and support services. This report combines two aspects of this project, first-hand experience through interviews, as well as an analysis that is based on a review of laws, policies, programmes and budgets to have a larger context to understand people’s lived experiences.

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