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“With CO-OP I’m the boss” – experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida

OHRVALL, Ann-Marie
BERGQVIST, Lena
HOFGREN, Caisa
PENY-DAHLSTRAND, Marie
May 2019

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Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.

 

Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.

 

Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.

 

Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.

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.

Capturing the difference we make : community-based rehabilitation indicators manual

WORLD HEALTH ORGANIZATION (WHO)
2015

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This manual presents indicators that "capture the difference (Community-Based Rehabilitation) CBR makes in the lives of people with disabilities in the communities where it is implemented. This manual presents these (base and supplementary) indicators and provides simple guidance on collecting the data needed to inform them. The indicators have been developed to show the difference between people living with a disability and their families and those without disabilities in relation to the information reported in the indicators. This comparability provides valuable information to CBR managers, donors and government agencies alike, which can be used to guide decision-making, support advocacy and improve accountability. Further, the ability of the indicators to provide a comparison of the populations of persons with disability to persons without disability aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which states that persons with disability have equal rights to those without disabilities...this manual serves to standardize the monitoring of differences made by in the lives of people with disabilities and their families, making it possible to compare the difference CBR makes across areas and countries. This manual aligns with the WHO Global Disability Action Plan 2014–2021, and may also be used to monitor other development plans in an easy and efficient way”

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.

Community-based rehabilitation programme evaluations : lessons learned in the field

GRANDISSON, Marie
2014

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This article highlights some lessons about  the strategy of community-based inclusive education, drawn  from  in different programmes in Latin America. Having worked in the region for several years as a CBR advisor and special education teacher, the author provides insights into the progress that has been made. Early detection of disability followed by early education, with support from within the community, helps children with disability to participate in mainstream schools. Sensitisation of the public can overcome discrimination and exclusion. Teachers have to be trained to adapt teaching methods for the benefit of those with special needs. The author concludes that communities ought to initiate these strategies in their local schools as inclusive education is good for all children.

 

Disability, CBR and Inclusive Development, Vol. 25, No. 1

The key informant child disability project in Bangladesh and Pakistan

MACTAGGART, Islay
MURTHY, GVS
2013

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The Key Informant Method (KIM) has previously been tested by CBM, LSHTM and others, and found to be a valid method for the identification of children with severe visual impairment and blindness in Bangladesh, using community volunteers in the place of a door-to-door survey. This report outlines a study that set out to expand this and test whether voluntary, community-level Key Informants (KIs) could be trained to effectively identify children with moderate or severe physical impairments, sensory impairments (visual and hearing) or epilepsy in Bangadesh and Pakistan, and if so whether this process could be used to assess prevalence and plan appropriate referral services for children meeting these criteria

Mainstreaming disability in the new development paradigm : evaluation of Norwegian support to promote the rights of persons with disabilities

INGDAL, Nora
NILSSON, Annika
2012

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"This report is the result of an external and independent evaluation of the Norwe¬gian Support to Promote the Rights of Persons with Disabilities in the last 11 years. The intention of the evaluation is to analyse the results of targeted and mainstreamed initiatives towards achieving the rights of persons with disabilities...The methodology included field visits in the four case countries: Malawi, Nepal, the Palestinian territory and Uganda to obtain a deeper understanding of how the rights of persons with disabilities have been promoted, and estimate the possible contributions of the Norwegian support. Afghanistan was included as a desk study"
Note: The report is available electronically and in printed version. A braille copy can be downloaded from the web. The four country reports, written in English, are available electronically. The summaries of the country studies are made available electronically, with translations to the relevant local languages Nepali, Arabic and Chewa. In addition an easy-read version in English and Norwegian of the main report is available electronically

Including the rights of persons with disabilities in UN programming at country level : a guidance note for United Nations country teams and implementing partners

INTER-AGENCY SUPPORT GROUP ON THE CONVENTION FOR THE RIGHTS OF PERSONS WITH DISABILITIES
2011

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"This guidance note outlines four main areas for mainstreaming the rights of persons with disabilities: UN cooperation at country level; country analysis (preceding UNDAF development); strategic planning (development of the UNDAF and its results matrix) and monitoring and evaluation (M&E)....By mainstreaming disability rights in their work at country level, UNCTs can respond to the request of persons with disabilities themselves, who have been calling for a new approach to disability, grounded on the conviction that all persons should be equally valued"

Capturing change in women’s realities : a critical overview of current monitoring and evaluation frameworks and approaches

BATLIWALA, Srilatha
PITTMAN, Alexandra
December 2010

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"This document provides a critique of current M[onitoring] &E[valuation] frameworks and approaches as experienced by women’s organizations and movements worldwide along with an analysis of a large number of M&E frameworks and tools. Part I of this document provides a broad overview of common challenges with monitoring and evaluation (M&E) and identifies feminist practices for engaging in M&E to strengthen organizational learning and more readily capture the complex changes that women’s empowerment and gender equality work seek. Part II offers an analysis of a large number of M&E frameworks and tools, along with some of their strengths and weaknesses in assessing women’s rights and gender equality processes and impacts"

Child-centred disaster risk reduction : building resilience through participation : lessons from Plan International

PLAN INTERNATIONAL
2010

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This report “presents the results and recommendations of a five-year programme and…includes a series of case studies illustrating how child-centred Disaster Risk Reduction (DRR) supports the delivery of the Hyogo Framework’s Priorities for Action, as well as the realisation of children’s rights to education, health and participation within disaster risk contexts…Child-centred Disaster Risk Reduction is an innovative approach to Disaster Risk Reduction (DRR) that fosters the agency of children and youth, in groups and as individuals, to work towards making their lives safer and their communities more resilient to disasters”

Empowered to differ : stakeholders' influences in community-based rehabilitation

FINKENFLÜGEL, Harry
2004

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'Empowered to differ' equally addresses researchers and CBR professionals. The book gives an overview about the developments in the field of community-based rehabilitation since 1978, using the examples of CBR projects in Southern Africa. Finkenflügel asks for the knowledge and the evidence for CBR and to what extent the roles, interests and powers of stakeholders can contribute to this knowledge and evidence

Palliative care in Sub-Saharan Africa : an appraisal

HARDING, Richard
HIGGINSON, Irene
2004

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This report was written from the belief that palliative care is, and will be for the forseeable future, an essential component in the continuum of managing HIV/AIDS in sub-Saharan Africa. There is now a wealth of experience in sub-Saharan Africa about the ways in which palliative care can be delivered both affordably and effectively. However, there remains a lack of properly documented evidence and research to demonstrate the importance of this work and promote its development. This report provides a review of existing evaluations of palliative care projects in sub-Saharan Africa with an emphasis on isolating the factors that lead to sustainability, local ownership and scaling up; the role of palliative care in the management of HIV/AIDS and how to integrate palliative care and Anti-Retroviral Therapy (ART); primary health based care projects in two countries, Kenya and Malawi, that could provide lessons for the implementation of palliative care; lessons from other parallel programmes which mirror palliative care delivery, for example, tuberculosis programmes, and primary care programmes with good links to local clinics and hospitals, and community mobilization and empowerment projects linked to health facilities. In this way it contributes to the effort of providing an evidence base to demonstrate the importance of palliative care and provides a source of reference for policy makers, practitioners, donors and researchers

Youth-adult partnerships show promise : youth involvement expands from local projects to institutional levels

SONTI, Smita
FINGER, William
March 2003

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This paper examines how youth can participate more broadly in projects, for example in policy, management and evaluation issues. Anecdotal evidence on the value of including youth perspectives in these more challenging areas is beginning to emerge, for example the Barcelona YouthForce at the XIV International AIDS Conference in Barcelona in July 2002. The paper concludes with a list of elements that help to make effective youth-adult partnerships. These elements cover organisational capacity; attitude shift; selection, recruitment and retention of youth; and level of participation

International consultation to review community-based rehabilitation (CBR)

WORLD HEALTH ORGANIZATION (WHO)
2003

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This document summarises the outcomes of the international consultation. The main conclusions were that human rights play a role in CBR, CBR has to be supported by national governments, various sectors have to cooperate and that UN agencies, governments and non-governmental organisations (NGOs) have to promote CBR as a poverty re-education strategy

Evaluating the impact of a community-based rehabilitation intervention

HARTLEY, Sally
2003

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This project evaluation summarizes the impact of community-based action by local women’s groups to improve the communication ability and quality of life of disabled children with communication problems. The project was designed to increase the present knowledge concerning appropriate interventions for children with communication problems who live in low-income countries. This report is useful to anyone interested in community-based nterventions for children with communication problems

Manual for the planning, organising and implementation of an awareness building campaign (ABC) for disabled persons' organisations

SOUTHERN AFRICA FEDERATION OF THE DISABLED (SAFOD)
et al
2002

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This manual is based on the experiences with planning, organisation, implementation and evaluation of the awareness building campaign (ABC) in Malawi in 1999-2001, which was jointly carried out by the Southern Africa Federation of the Disabled (SAFOD), the Federation of Disability Organisations of Malawi (FEDOMA) and the Federation of Disability Organisations of Norway (FFO)

Leading to choices : a leadership training handbook for women

AFKHAMI, Mahnaz
EISENBERG, Anne
VAZIRI, Haleh
2001

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This handbook is the result of work across three continents and engages the ideas and skills of women and men from a variety of sectors including those from NGOs, scholars, political leaders and development practitioners. It is a tool adaptable to any community, designed to enhance women’s participation and leadership in various spheres of social interaction and decision-making. It is based on the concept that women need to be empowered if they are to achieve their rights, participate in building civil society, and help attain sustainable and equitable development. The handbook seeks to enable the reader to identify for herself and develop the best means to communicate, listen, build consensus, create shared meaning, and foster learning partnerships at work, at home, and in her community. There are twelve workshop sessions in the book, useful for facilitating leadership training sessions but also as a general resource for facilitating any type of meeting. The first part of the book is about ‘Developing the Self for Leadership’, the second concerns ‘Communicating with Others’ and the third is ‘Creating Learning Partnerships’. Appendices contain alternative culture-specific sessions, ideas for alternative lesson and exercise facilitation tactics, and strategies for enhancing communication among workshop participants

Creating space for children's participation : planning with street children in Yangon, Myanmar

DORNING, Karl
O'SHAUGHNESSY, Tim
2001

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This paper is about a two-week empowerment evaluation that took place in April 2001 with World Vision's Street Children and Working Children Program (SWC), which is based in Yangon, Myanmar. The process allowed the children to be the primary evaluators. They spent time interviewing various stakeholders in the programme and analysed the information gathered. The evaluation described in this report was an experience that had a great impact on all involved. It brought about a fundamental shift in the way project staff viewed the children and, equally importantly, in the way the children viewed themselves

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