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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.

Rehabilitation in health systems: guide for action

WORLD HEALTH ORGANISATION (WHO)
May 2019

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There is great variation across countries regarding the rehabilitation needs of the population, characteristics of the health system and the challenges that face rehabilitation. For this reason, it is important for each country to identify their own priorities and develop a rehabilitation strategic plan. A rehabilitation strategic plan should seek to increase the accessibility, quality and outcomes of rehabilitation.

To assist countries to develop a comprehensive, coherent and beneficial strategic plan, WHO has developed Rehabilitation in health systems: guide for action. This resource leads governments through a four-phase process of (1) situation assessment; (2) strategic planning; (3) development of monitoring, evaluation and review processes; and (4) implementation of the strategic plan. This process utilizes health system strengthening practices with a focus on rehabilitation.

The Rehabilitation in health systems: guide for action provides practical help that directs governments through the four phases and twelve steps. The process can take place at national or subnational level. Typically phases 1 to 3 occur over a 12-month period, while phase 4 occurs over the period of the strategic plan, around 5 years. The four phases and accompanying guidance are outlined below

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.

Coordination between health and rehabilitation services in Bangladesh: Findings from 3 related studies

PRYOR, Wesley
MARELLA, Manjula
NGUYEN, Liem
SMITH, Fleur
JALAL, Faruk Ahmed
CHAKRABORTY, Ripon
HAQUE, Mazedul
MOSTOFA, Golam
HASAN, Rajib
April 2019

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The unmet need for rehabilitation is profound and is likely to worsen as population health shifts towards longer lives lived with more ill-health and disability. The WHO Global Action Plan on Disability and the Rehabilitation 2030 framework [1] call for quality evidence to inform targeted responses.
The intent of this work is to examine six IDSCs (Integrated Disability Service Centres) in detail but to use the results to inform new activities through the network of more than 100 Integrated Disability Service Centres, with potential to influence practice in other services. As such, results of this work have the potential to directly inform policy decisions concerning future investments in rehabilitation services in Bangladesh and bring awareness to key stakeholders on current challenges and potential solutions.

Research was conducted during March-October 2018 in Kurigram, Tangail, Manikgonj, Dhaka and Narsingdi districts of Bangladesh to map out the current trends and determinants of good coordination
between health and rehabilitation, emphasising quantitative measures of: timeliness, continuity, acceptability, availability and integration

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

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.

Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

WONG CHONG, Ruud
WILLEMEN, Agnes M
VOORMAN, Jeanine
KETELAAR. Marjolijn
BECHER, Jules
VERHEIJDEN, Johannes
SCHUENGEL, Carlo
April 2019

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Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.

 

Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.

 

Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.

 

Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.

Women and girls with disabilities. Needs of survivors of gender based violence and services offered to them

BURGHAL, Waseem
March 2019

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This study on GBV among women and girls with disabilities was conducted by UNFPA (United Nations Population Fund) with the support of Denmark in the context of the GBV Sub-Cluster Strategy 2018-2020. It was based on a needs analysis and mapping of services offered to women and girls with disabilities aged 15 and older who are survivors of gender-based violence (GBV) in the West Bank and Gaza Strip, particularly in view of the poor protection, care and social services available to women survivors of violence. Its objective was to map the available services; analyze major gaps and challenges related to service delivery; identify roles and responsibilities of stakeholders and service providers, including stakeholder coordination, legislation and policies, capacity, prevention and response services, the referral process and accountability; as well as to make recommendations and propose interventions to address the weaknesses in the protection system for women and girls with disabilities in Palestine.

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

 

Global survey of inclusive early childhood development and early childhood intervention programs

VARGAS-BARON, Emily
et al
March 2019

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To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

 

The main objectives of the survey were to:

  • Map current implementation of IECD and ECI programs and related activities;
  • Describe key IECD and ECI program features;
  • Identify gaps and challenges in providing accessible IECD and ECI services;
  • Document factors associated with successful implementation and scale-up;
  • Generate recommendations to inform future policy and program development and national planning and implementation efforts.

 

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

Developing country-specific wheelchair service provision strategic plans for Romania and the Philippines

GOWRAN, Rosemary
et al
March 2019

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The process used to support the development of wheelchair service strategic plans in Romania and the Philippines is described. The paper considers the influences, meaning, challenges and developments when producing strategic priorities within two different contexts.

 

Journal of Disability and Rehabilitation: Assistive Technology, Volume 14, 2019 - Issue 6

Problematizing ‘productive citizenship’ within rehabilitation services: insights from three studies

FADYL, Joanna K
TEACHMAN, Gail
HAMDANI, Yani
March 2019

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Background: The idea that everyone should strive to be a ‘productive citizen’ is a dominant societal discourse. However, critiques highlight that common definitions of productive citizenship focus on forms of participation and contribution that many people experiencing disability find difficult or impossible to realize, resulting in marginalization. Since rehabilitation services strive for enablement, social participation, and inclusiveness, it is important to question whether these things are achieved within the realities of practice. Our aim was to do this by examining specific examples of how ‘productive citizenship’ appears in rehabilitation services.

 

Methods: This article draws examples from three research studies in two countries to highlight instances in which narrow understandings of productive citizenship employed in rehabilitation services can have unintended marginalizing effects. Each example is presented as a vignette.

 

Discussion: The vignettes help us reflect on marginalization at the level of individual, community and society that arises from narrow interpretations of ‘productive citizenship’ in rehabilitation services. They also provide clues as to how productive citizenship could be envisaged differently. We argue that rehabilitation services, because of their influence at critical junctures in peoples’ lives, could be an effective site of social change regarding how productive citizenship is understood in wider society.

HIV prevention, treatment and care programming for people with disabilities (Disability Inclusion Helpdesk Report No. 7)

BELL, Emma
CORBY, Nick
February 2019

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This document provides a rapid review of the evidence on disability inclusive approaches to HIV prevention and response. The purpose of this review is to inform DFID’s policy and programming around integrated approaches to HIV, care and treatment. After briefly outlining the methodology in section 2, section 3 provides an overview of the evidence base on disability and HIV programming, and section 4 provides an overview of key barriers to accessing HIV-related services for people with disabilities. Finally, section 5 provides a series of case studies highlighting lessons learned including key enabling factors. This review finds that overall the evidence base on disability inclusive HIV programming is limited, with the majority of evidence from disability-specific interventions targeted at specific groups of people with different impairments

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.

Assistive technology in Tajikistan: Situational analysis

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication summarizes the current gaps, needs and opportunities for intervention in the field of assistive technology in Tajikistan. The situational analysis was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. It was undertaken in collaboration with different Government ministries and State agencies, development partners, United Nations agencies, nongovernmental organizations, disabled people’s organizations and users of assistive products. It adopted a realist synthesis approach, responsive to the unique social, cultural, economic and political circumstances in the country. The evaluation focuses on assistive technology policy and governance, service provision and the impact of assistive technology on the health and well-being of individual users and their families, with the aim of improving access to high-quality, affordable assistive products in Tajikistan.

 

200 persons with disabilities participated in a survey designed to collect information on self-reported need for assistive products, user experiences and barriers to access. An additional 11 focus groups made up of persons with disabilities and older adults held indepth discussions on assistive technology. The major providers of assistive technology (Government facilities, nongovernmental organizations, local producers) were also interviewed as part of the research"

The waiting list. Addressing the immediate and long-term needs of victims of explosive weapons in Syria

O'REILLY, Claire
et al
2019

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This report looks at the challenges linked to the use of explosive weapons in the Syrian context for the provision of adequate immediate assistance and to plan for mid- to long-term assistance to the victims of explosive violence, to ensure their full recovery and inclusion into society. It is based on data and testimonies collected from humanitarian agencies, actors and patients across all areas of control in Syria. The testimony of Farah, a Syrian girl injured during the bombing of her school, and of her mother, is shared throughout the report to illustrate the challenges faced by victims. 

This report was compiled from June to August 2019 and relies on multiple sources, including review of both gray and academic literature, published and unpublished data from INGOs working in Syria response, firsthand interviews with patients and Syrian humanitarians working both inside Syria and from cross-border locations, and expatriate staff from INGOs and UN agencies. Interviews were conducted at a distance during June and July 2019 with 12 individuals, among which: 2 patients; 3 mine action operators; 4 medical staff, and 3 humanitarian workers 

Users’ satisfaction with assistive devices in Afghanistan

MOHAPATRA, Bikram Keshari
2019

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Purpose: The objective of this study was to assess users’ satisfaction and effectiveness of assistive devices in four regions of Afghanistan, namely Mazar-e-Sharif, Ghazni, Jalalabad and Taloqan.

 

Method: A random sample of 785 users, who were provided with 874 mobility and assistive devices in four regional prosthetic and orthotic workshops of the Swedish Committee for Afghanistan (SCA), participated in the study.

 

Results: The study revealed that the majority of the participants rated the assistive devices as very useful. While 45% of respondents even described them as excellent, 49% expressed a good level of satisfaction with the services they received at treatment centres. Similarly, the majority of respondents (67%) mentioned a maximum level of improvement, while 15% claimed to have witnessed some improvement in their physical condition. Fitting, comfort, and ease of use, along with durability, weight and appearance were rated as the most important factors of assistive devices. On the other hand, slow service and limited access to maintenance and repair facilities were identified as reasons for dissatisfaction.

 

Conclusion: The study provided continuous and valuable information to rehabilitation professionals regarding device effectiveness and satisfaction. The findings also recommended a stronger focus on comfort and usefulness of mobility and assistive devices. Lastly, the study suggested that lack of local device-repair service needs to be addressed by rehabilitation professionals. 

The GRID Network: A Community of Practice for Disability Inclusive Development

COCKBURN, Lynn
MBIBEH, Louis
AWA, Jacques Chirac
2019

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Purpose: This paper aimed to provide an overview of the evaluation of the GRID Network (Groups for Rehabilitation and Inclusive Development) and the impact it had on its members.

Method:  Information was collected through a compilation of the resources developed during the project, and a summative evaluation process was employed at the end of the project. The paper is a short report on the summative evaluation.

Results: GRID Network members reported that the network was effective and beneficial. They developed new information and knowledge that was relevant to their local contexts; shared knowledge from local, national, and international sources; and, increased their skill in using social media for professional purposes. Recommendations include continuing with this kind of community of practice, with greater opportunities for more engagement and training; inclusion of more partner organisations; large group workshops and conferences; increased attention to advocacy for policy change; and, for more research to be carried out locally.

Conclusion and Implications: This project demonstrated that it is possible to develop and maintain a community of practice in a low-resource context on a minimal budget, even during times of political crisis. Further programme development, evaluation, and research are warranted to ascertain how this model can be scaled up to include a broader group of rehabilitation and other practitioners involved in disability inclusive development.

 

Disability, CBR & Inclusive Development, [S.l.], v. 30, n. 2, p. 84-94,  (2019)

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