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Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Community-Based Rehabilitation Programme Evaluations: Lessons Learned in the Field

GRANDISSON, M
THIBEAULT, R
HEBERT, M
TEMPLETON, A
2014

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Purpose: There is limited guidance available on the best ways to evaluate community-based rehabilitation (CBR) programmes. In this paper, we share lessons learned on suitable evaluation strategies for CBR through a South African programme evaluation.

 

Method: An empowerment evaluation of an early childhood development programme was conducted in April 2012. At the end of the field visit, parents, staff members and managers provided feedback anonymously about what they liked and disliked about the evaluation, and offered their suggestions. The principal investigator documented the evaluation process in a journal, recording the barriers and facilitators encountered, the participation of the 3 groups and the effectiveness of the different strategies used. The data analysis followed the principles of grounded theory.

 

Results: The main lessons learned about CBR programme evaluation are associated with strategies to: 1) foster active participation, 2) collect accurate and credible information, 3) build local capacity, and 4) foster sustainable partnerships. Time spent to promote a positive learning spirit and the use of participatory tools with all groups appeared critical to active engagement in evaluation activities. Sharing tools and experiences in context built more local capacity than was achieved through a formal workshop. The findings also highlight that a flexible model, multiple data collection methods, and involvement of all relevant stakeholders maximise the information gathered. Sensitivity to the impact of culture and to the reactions generated by the evaluation, along with ongoing clarifications with local partners, emerged as core components of sustainable partnerships.

 

Conclusion: CBR evaluators must use a variety of strategies to facilitate active engagement and build local capacity through the evaluation process. Many of the strategies identified relate to the way in which evaluators interact with local stakeholders to gain their trust, understand their perspectives, facilitate their contribution, and transfer knowledge. Further research is needed on how toconduct empowering CBR programme evaluations.

Inclusive project cycle management training

CHRISTOFFEL BLINDENMISSION (CBM)
December 2012

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"Inclusive Project Cycle Management (IPCM) training package has been developed for CBM staff and Partner Organisations worldwide

 

The Trainers’ Manual will guide CBM trainers. It contains the curriculum for the course and training resources for trainers to help them deliver the course. The training will be successful if the trainers make sufficient planning time to prepare in advance and to respond to partners training needs. Different contexts and different partners may require different emphasis on areas that may be a challenge. This training material is not suggested as a prescriptive manual but as a suggested framework that can be added to and deepened as required. This means adapting the course to the local context and training needs and competencies of partners. In particular, it would be good to supplement or replace case studies included in the course with local case studies (refer Handout 8) and to have participants draw on their own examples

 

In addition to the Trainers’ Manual, there are also Participant Folders. There is a small amount of information to be included in the folders at the beginning. Participants will receive extra course materials during the three days to complete their folders (Handouts)


The objective of the training is to promote inclusion in CBM’s work and the work of CBM’s partners. It focuses on two particular aspects of inclusion – how to ensure people with disabilities and both women and men participate in and benefit from development activities"

Sustainability Criteria for CBR Programmes – Two Case studies of Provincial Programmes in Vietnam

MIJNARENDS, Donja M
PHAM, D
SWAANS, Kees
VAN BRAKEL, W H
WRIGHT, Pamela
2011

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Purpose: This paper aims to explore the conditions needed for sustainable community based rehabilitation (CBR) programmes for persons with disabilities in Vietnam, and to identify the conditions and opportunities missing at present for the implementation of such programmes.

 

Method: Two CBR programmes in Vietnam, one medical based and one comprehensive (medical, educational, livelihood, social and empowerment), were evaluated for requirements and the current situation. Four factors were taken into account - human resources, organisational setting, social and political environment, and financing. Data were collected through interviews with programme managers and focus groups with stakeholders from provincial, district and communal levels, and with persons with disabilities. Persons with disabilities also completed a questionnaire to evaluate their satisfaction with the programme and their involvement in it.

 

Results: The conditions needed for a sustainable CBR programme were identified: availability of human resources, training, monitoring and evaluation, collaboration, commitment and financing. The conditions missing at present were: a stable pool of human resources (in both programmes), collaboration between sectors and with local authorities (in the medical programme), and knowledge about how to maintain financing (in both programmes). Persons with disabilities were more satisfied with their involvement in the comprehensive programme than in the medical programme. Stakeholders proposed opportunities to increase sustainability; highest priority was given to a collaboration plan (comprehensive CBR programme) and to involvement of other sectors in the CBR Steering Committee (medical CBR programme).

 

Conclusions: Few differences were found in conditions needed for sustainability of the medical and comprehensive programmes. The existence of disabled persons’ organisations (DPOs) seemed to be associated with the level of satisfaction persons with disabilities felt with their involvement in the programme.

 

Limitations: The People’s Committee was not involved in this research, although their input was perceived to be important. Generalisation of the results of this study should be done with caution because health system structures and organisational levels of CBR differ.

Implementation completion and results report on a trust fund grant in the amount of US$5 million to the Islamic Republic of Pakistan for a earthquake disability project

WORLD BANK (WB) Social Protection Sector, Human Development Unit
June 2010

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This paper reports on the implementation and the results of a earthquake disability project in Pakistan that aimed to improve the quality of life of people with disabilities and their families in areas affected by the October 8, 2005 earthquake, by ensuring better mobility, improved physical and mental health, increased participation in social and economic life and strengthened empowerment. This study was designed to assess the key factors affecting the implementation and outcomes of this project, the outcomes, the risk to development outcome as well as the bank and borrower performance

Report No ICR00001584

Capacity development in disability and development for CLMV government officers

FOUNDATION FOR ADVANCED STUDIES ON INTERNATIONAL DEVELOPMENT (FASID)
June 2010

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This is a completion report of a disability project which started from July 2007 to June 2010 with the objective of enhancing the capacities of government officers engaged in disability issues to analyse, formulate and implement policies and programmes in Cambodia, Lao PDR, Myanmar and Vietnam (CLMV countries). This project report reviews and summarises FASID’s activities and achievements

CBR stories from Africa : what can they teach us?

COLERIDGE, Angela
HARTLEY, Sally
Eds
2010

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"Community Based Rehabilitation (CBR) is an evolving concept. Its effectiveness depends on continuous reflection, debate and learning. This book aims to facilitate this process through the stories of five CBR programmes in Africa, told by those involved with the programmes and reflected on with honesty...Each of the five programmes has been invited to document their work, describing how its programme started and assessing the effectiveness of the approach it has chosen. They were asked to identify their successes and challenges, and to reflect on how difficulties are being overcome. Life stories illustrate the impact each approach can have on individual lives. The book offers itself as a reflective tool, to be used by practitioners. Each chapter asks specific questions of its readers, inviting them to draw comparisons with their own programme. The concluding section of the book outlines ideas for evaluating and developing their CBR programmes"

Integrating gender into HIV/AIDS programmes in the health sector : tool to improve responsiveness to women’s needs

AMIN, Avni
et al
2009

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The purpose of this operational tool is to: raise awareness of how gender inequalities affect women’s access to and experience of HIV and AIDS programmes and services; and offer practical actions on how to address or integrate gender into specific types of HIV and AIDS programmes and services. The vulnerability of women, their risk of HIV infection and the impact of the epidemic on them are heightened by many factors, including: the low status accorded to women in many societies, their lack of rights, their lack of access to and control over economic resources, the violence perpetrated against them, the norms related to women’s sexuality, and women’s lack of access to information about HIV. This tool is primary aimed at primarily programme managers and health-care providers involved in setting up, implementing or evaluating HIV and AIDS programmes

Is doing good "good" : professional motives vs. community needs

POLLARD, Nick
SAKELLARIOU, Dikaios
2009

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"This paper offers a critical discussion of the goodness of fit between professional motives and community needs in the field of community-based rehabilitation (CBR). Data were drawn from the authors’ involvement in a survey of occupational therapists involved in CBR and a search of CINAHL, PsychInfo and Medline online databases for related descriptive and analytical articles. Due to cultural differences and time constraints CBR professionals often are, and remain, ‘outsiders’ to the community they are working with. The focus of CBR is sometimes uncertain. Professional motives do not always meet community needs and good intentions do not necessarily transpire into sustainable, culturally appropriate action. The involvement of the community in all stages of programme development and implementation is important both to ensure relevancy and build alliances with the community. CBR needs to be approached and evaluated as a unique area of professional practice"

 

Asia Pacific Disability Development Journal, Vol 20, No 2

Monitorings and evaluation manual : handbook on monitoring and evaluation of development projects

DISABLED PEOPLE’S ORGANISATIONS DENMARK (DPOD)
2009

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“The manual provides answers to what monitoring and evaluation are about, and what it takes to perform them. Numerous specific examples are presented, and annexes at the end serve practical purposes in day-to-day work, including a list to inspire the programming of monitoring and evaluation visits, and a catalogue of ideas for the formulation of indicators”

Making a difference : M&E of policy research

HOVLAND, Ingie
July 2007

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"This paper aims to advance understanding on how to monitor and evaluate policy research, i.e. research that is undertaken in order to inform and influence public policy. Policy is defined very broadly to encompass both policy decisions and processes, including implementation..."

Making inclusion operational : legal and institutional resources for World Bank staff on the inclusion of disability issues in investment projects

GUERNSEY, Katherine
NICOLI, Marco
NINIO, Alberto
September 2006

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This paper aims to support World Bank staff to mainstream disability issues in their work. The intention is to promote the inclusion of disabled people in all aspects of a project cycle, from design, to implementation, monitoring and evaluation. In particular, the paper provides a practical checklist to address specific actions that promote inclusive development. The paper would be a useful tool for any practitioners working in the field of development

Tools together now : 100 participatory tools to mobilise communities for HIV/AIDS

INTERNATIONAL HIV/AIDS ALLIANCE
May 2006

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This publication provides a comprehensive selection of participatory learning and action tools and interactive exercises to enable communities, organisations and groups to work together and effectively in the design, implementation and evaluation of HIV and AIDS programmes. It was specifically designed to use alongside "All Together Now! Community Mobilisation for HIV/AIDS". The what, why and how of each tool is clearly described, and comments and suggestions for facilitators are also included. Each activity is accompanied by a chart, diagram or illustration that can be replicated or adapted in workshops and group activities. Tools are arranged in sections, including mapping tools, time analysis tools, linkages and relationship tools, experiential tools, prioritisation and quantification tools, action planning tools and PLA training tools. Examples of tools presented include: body mapping, community mapping, story with a gap, negotiation card game, picture story, chapati diagram, impact matrix and trust game

The Synergy APDIME program management toolkit : resources for HIV/AIDS program managers

SYNERGY PROJECT
2006

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This electronic resource aims to assist programme designers and managers in HIV/AIDS prevention, care and support programming in developing countries. It includes tools such as worksheets, budget templates, survey instruments, data and software produced by a variety of organisations working on these issues. APDIME stands for the stages in the programming cycle: Assessment, Planning, Design, Implementation monitoring, and Evaluation. Each module is clearly organised in key stages and tools include worksheets, budget templates, survey instruments, data, software and links to related resources

AIDS communication

SKUSE, A
POWER, F
Ed
September 2005

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This paper sets out DFID's Information and Communcation Directorate's understanding of the role of communication in HIV programming. It is intended primarily as a resource for DFID staff; but presents a holistic and engaging framework for HIV communication which will be useful beyond, as well as within, DFID. The paper encourages a shift away from often inappropriate programme targets of individual behaviour change, and toward community participation, access to education, information and dialogue -- processes which acknowledge and harness local community resources and capacities. It also promotes integrated communication around prevention, treatment and care

The Synergy APDIME program management toolkit : resources for HIV/AIDS program managers

SYNERGY PROJECT
2005

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This CD-ROM and website present a toolkit developed by USAID's Synergy Project to support programme designers and managers in HIV prevention, care and support worldwide. It includes tools such as worksheets, budget templates, survey instruments, data and software produced by a variety of organisations working on these issues. APDIME stands for the stages in the programming cycle: Assessment, Planning, Design, Implementation monitoring, and Evaluation

Integrating HIV voluntary counselling and testing services into reproductive health settings : stepwise guidelines for programme planners, managers and service providers

MYAYA, Mary
2004

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This guide aims to provide reproductive and sexual health programme planners, managers and providers with the information necessary to integrate voluntary counselling and testing (VCT) for HIV/AIDS within their services. In particular it considers integration within the context of family planning (FP) service provision. FP and VCT provision have similar aims of reaching sexually active people and promoting safe and healthy sexuality. FP settings therefore offer specific opportunities for reaching women with VCT. This guide looks at the continuum of possibilities available for integrating VCT. It is divided into 5 sections. Section 1 provides an introduction to VCT; section 2 details an assessment process for use when considering how to integrate VCT services; section 3 describes factors to consider when planning the integrated service; section 4 covers specific implementation issues; and section 5 focuses on monitoring and evaluation. The appendices contain checklists, sample monitoring tools and further reference material. Most of the references are available through the Internet

National monitoring and evaluation framework for the multi-sectoral response to HIV/AIDS in Ethiopia

HIV/AIDS PREVENTION AND CONTROL OFFICE (HAPCO)
December 2003

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In 1998 the Ethiopian government scaled up the response to HIV/AIDS by forging a multi-sectoral and multi-level partnership with various stakeholders. A national policy on HIV/AIDS was enacted in August 1998. This resulted in a Strategic Framework for the National Response to HIV/AIDS in Ethiopia for 2001-2005. This monitoring and evaluation framework was developed to strengthen the multi-sectoral response to HIV/AIDS, to systematically track progress and evaluate the effects of the national response, and to meet the international reporting requirements for funds secured to fight HIV/AIDS in the country. It covers basic monitoring and evaluation concepts, an implementation strategy, national level indicators and resource requirements

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