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Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

“You have to argue the right way”: user involvement in the service delivery process for assistive activity technology

PEDERSEN, Heidi
KERMIT, Patrick S
SÖDERSTRÖM, Sylvia
2020

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Purpose: 

This article critically examines user-involvement in the service delivery process for assistive activity technology.

 

Methodology:

Data were collected in semi-structured interviews with 44 end users of assistive activity technology and in focus group interviews with 11 professionals at Norway’s Assistive Technology Centre. Data was analysed according to a stepwise deductive–inductive approach.

 

Findings: 

Flawed organisational principles like division of responsibility, unclear regulations, and a lack of competence with assistive activity technology among service professionals have hindered user involvement in the service delivery process.

 

Conclusion:

 A missing knowledge of assistive activity technology among professionals and the current organisation of services creates barriers for a positive collaboration with users in the service delivery process of assistive activity technology.

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Return to work predicts perceived participation and autonomy by individuals with stroke

Westerlind, Emma
Persson, Hanna C
Tornbom, Karin
SUNNERHAGEN, Katharina S
May 2019

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Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.

 

Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.

 

Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.

 

Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.

Community-based rehabilitation workers’ perspectives of wheelchair provision in Uganda: A qualitative study

SEYMOUR, Nikola
GEIGER, Martha
SCHEFFLER, Elsje
2019

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Background: The challenges of wheelchair provision and use in less resourced settings are the focus of global efforts to enhance wheelchair service delivery. The shortage of professional wheelchair service providers in these settings necessitates the collaboration of multiple stakeholders, including community-based rehabilitation (CBR) workers, whose role needs to be further understood.

 

Objectives: The aim of this study was to determine what CBR workers in three areas of Uganda perceived as (1) the challenges with wheelchair provision and use, (2) the factors contributing to these challenges, (3) the role they themselves can potentially play and (4) what facilitators they need to achieve this.

 

Method: This qualitative study in the transformative paradigm comprised focus group discussions to gather perceptions from 21 CBR workers in three areas of Uganda, each with an operational wheelchair service, participant observations and field notes. Thematic analysis of data was implemented.

 

Results: Community-based rehabilitation workers’ perceptions of challenges were similar while perceived causes of challenges differed as influenced by location, historical and current wheelchair availability and the CBR workers’ roles. Their main responsibilities included assistance in overcoming barriers to access the service, transfer of skills and knowledge related to wheelchairs, follow-up of users for wheelchair-related problem-solving, and user and community empowerment.

 

Conclusion: Community-based rehabilitation workers can contribute in various ways to wheelchair service delivery and inclusion of wheelchair users; however, their capabilities are not consistently applied. Considering the diversity of contextual challenges, CBR workers’ range of responsive approaches, knowledge of networks and ability to work in the community make their input valuable. However, to optimise their contribution, specific planning for their training and financial needs and effective engagement in the wheelchair services delivery system are essential.

 

 

African Journal of Disability, Vol 8, 2019

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review. Campbell Systematic Reviews 2019:3

FLEMING, Padraig
et al
January 2019

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This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

 

This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

 

DOI 10.4073/csr.2019.3

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

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SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

World report on vision

WORLD HEALTH ORGANISATION (WHO)
2019

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This report makes the case that integrated people-centred eye care is the care model of choice and can help meet the challenges faced. Chapter 1 highlights the critical importance of vision; describes eye conditions that can cause vision impairment and those that typically do not; reviews the main risk factors for eye conditions; defines vision impairment and disability; and explores the impact of vision impairment. Chapter 2 provides an overview of the global magnitude of eye conditions and vision impairment and their distribution. Chapter 3 presents effective promotive preventive, treatment, and rehabilitative strategies to address eye care needs across the life course. Chapter 4 starts by taking stock of global advocacy efforts to date, the progress made in addressing specific eye conditions and vision impairment, and recent scientific and technological advances; it then identifies the remaining challenges facing the field. Chapter 5 describes how making eye care an integral part of universal health care (including developing a package of eye care interventions) can help address some of the challenges faced by countries. Chapter 6 presents IPEC and explains the need for engaging and empowering people and communities, reorienting the model of care based on a strong primary care and the need for coordinating services within and across sectors; and creating an enabling environment. The report ends with five recommendations for action that can be implemented by all countries to improve eye care. 

DFID’s strategy for disability inclusive development 2018-23

December 2018

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The UK Department for International Development (DFID)'s vision is a world where all people with disabilities, women, men, girls and boys, in all stages of their lives, are engaged, empowered and able to exercise and enjoy their rights on an equal basis with others, contributing to poverty reduction, peace and stability. A world where no-one is left behind.

Over the next five years DFID will prioritise four strategic pillars for action: (i) inclusive education, (ii) social protection, (iii) economic empowerment, and (iv) humanitarian action. To complement this focus DFID are adopting three cross-cutting areas, vital to disability inclusion, which will be consistently and systematically addressed in all of their work: (v) tackling stigma and discrimination; (vi) empowering girls and women with disabilities; and (vii) access to appropriate assistive technology.

DFID have introduced a new set of standards for all DFID business units to meet. The standards require all country offices and departments to; review their leadership and culture, engage with people with disabilities, influence others, adapt programming and improve data and evidence.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
et al
May 2018

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"Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. 

Disability and Rehabilitation: Assistive Technology 
Volume 13, 2018 - Issue 5: Position Papers from the First Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit

This issue has 7 papers from the GREAT summit

https://doi.org/10.1080/17483107.2018.1471169

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
LAYTON, Natasha
BENTLEY, Jacob
BOOT, Fleur Heleen
BORG, Johan
DHUNGANA, Bishnu Maya
GALLAGHER, Pamela
GITLOW, Lynn
GOWRAN, Rosemary Joan
GROCE, Nora
MAVROU, Katerina
MACKEOGH, Trish
MCDONALD, Rachael
PETTERSSON, Cecilia
SCHERER, Marcia J
2018

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Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People’s preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Disability Equality: In Theory and Practice. Social Inclusion, volume 6, issue 1 (2018)

PRIESTLEY, Mark
WADDINGTON, Lisa
Eds
March 2018

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This special issue of this journal includes the following papers:

  • Achieving Disability Equality: Empowering Disabled People to Take the Lead
  • Dis-Equality: Exploring the Juxtaposition of Disability and Equality
  • Leveraging Employer Practices in Global Regulatory Frameworks to Improve Employment Outcomes for People with Disabilities
  • Equality of What? The Capability Approach and the Right to Education for Persons with Disabilities
  • Reasonable Accommodation as a Gateway to the Equal Enjoyment of Human Rights: From New York to Strasbourg
  • Disability, Access to Food and the UN CRPD: Navigating Discourses of Human Rights in the Netherlands
  • Rehabilitation as a Disability Equality Issue: A Conceptual Shift for Disability Studies?
  • Inclusions and Exclusions in Rural Tanzanian Primary Schools: Material Barriers, Teacher Agency and Disability Equality
  • Education, Work, and Motherhood in Low and Middle Income Countries: A Review of Equality Challenges and Opportunities for Women with Disabilities
  • Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research


 

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Employment outcomes of skills training in South Asian countries: An evidence summary

ILAVARASAN, P Vigneswara
KUMAR, Arpan K
ASWANI, Reema
November 2017

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This evidence summary of systematic reviews provides insights for policy makers surrounding the impact of training programmes on employment outcomes. There are 11 studies included in this summary focusing on technical and vocational education and training (TVET), rehabilitation and counselling, personality development (including leadership training, stress management and communication skills training) and entrepreneurship training programmes.

 

The target groups covered in the included studies are diverse including people with disabilities, health workers, women and enterprises as a whole. The final studies comprise of one study each from 2011 and 2017; two studies each from 2013, 2015 and 2016; and three studies from 2014. The focus of this evidence is on low and middle income South Asian countries namely: Afghanistan, Bangladesh, Bhutan, India, Nepal, Pakistan, and Sri Lanka

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

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