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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.

Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
2019

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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.

 

Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).

 

Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.

 

Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).

 

Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.

 

African Journal of Disability, Vol 8, 2019

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

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.

Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

Stigma, disability and development

BOND DISABILITY AND DEVELOPMENT (DDG)
November 2017

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This briefing considers how stigma affects people with disabilities and why challenging stigma is a critical issue for development.

 

Examples of successful efforts by UK non-governmental organisations (NGOs) to reduce and eliminate stigma are briefly outlined including: self help groups; alliances between groups (including DPOs); staff training; skills training and wider awareness raising.

How CBM Australia supports engagement with government for disability inclusion and prevention

CBM AUSTRALIA
March 2016

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CBM Australia engages both directly and indirectly with governments. Indirectly, CBM Australia supports other organisations, for instance disabled people’s organisations or civil society organisations to engage with governments. This report looks at the different ways that CBM partners seek influence government and promote sustainability. It considers the different roles and relevance of activism, advocacy, service delivery and advisory approaches.

 

The cases in this report were identified and gathered through semi-structured interviews with CBM’s Program Officers, Technical Advisors, regional/country office and project staff in-country, as well as drawing on reports and evaluations. The report starts with a section explaining the four different approaches to working with government, followed by a brief introduction to each approach, highlighting what CBM are doing and the key lessons learned. Each section is followed by case studies giving more detailed insight into how CBM are engaging, key achievements, challenges and the lessons learned. Fifteen case studies covering key projects from CBM Australia’s International Programs and the Inclusive Development Team are described in this report.

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.

Independent by not alone. Global report on the right to decide

LAURIN-BOWIE, Connie
Ed
June 2014

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Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) reflects a fundamental shift in thinking: it asserts that with support all people with intellectual disabilities are able to make decisions and have control in their lives. This Global Report presents the perspective of people with intellectual disabilities and our families on the right to decide. Over two years, over 600 self-advocates, family members, disability advocates, and professionals participated in discussions motivated by Inclusion International's Global Campaign on the Right to Decide. Additionally, more than 80 organizations from more than 40 countries worldwide contributed.

Support to organisations representative of persons with disabilities

GEISER, Priscille
ZIEGLER, Stefanie
ZURMÜHL, Ute
July 2011

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This policy paper is based on the practice and experience acquired by Handicap International (HI) in working with and supporting organisations representative of people with disabilities. The paper first outlines the development of DPOs and their particular roles and responsibilities with regards to the goal of improving the situation of persons with disabilities. It then discusses the importance of supporting DPOs specifically regarding HI’s engagement, presents key components of projects, and highlights links with HI’s institutional framework documents. This paper is useful for anyone interested in support to organisations representative of persons with disabilities

Political participation of women with disabilities in Cambodia : research report 2010

HANDICAP INTERNATIONAL FRANCE (HIF)
THE CAMBODIAN DISABLED PEOPLE’S ORGANIZATION (CDPO)
THE COMMITTEE FOR FREE AND FAIR ELECTIONS IN CAMBODIA (COMFREL)
2010

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"This report examines the interests of women with disabilities, as well as the barriers to their participation. It also provides recommendations for the promotion of their electoral and political participation, while highlighting opportunities and strategies for intervention and engagement by relevant stakeholders"

Youth to youth|Disability-sensitive youth to youth : methodologies in HIV and AIDS

HANDICAP INTERNATIONAL KENYA
2010

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This video features HIV and AIDS prevention and education initiatives in Kenya. It particularly targets the youth population due to a lack of available information and risk behaviours, such as sexuality, drug use and alcohol use. In order to prevent risks and present treatment options for the youth who are AIDS-carriers, several youth groups organized the following activities to prevent and fight the disease: street theatre for awareness-raising, group education sessions, and promotion of VCT services for communication and information. This video contains several testimonies and one features Mercy, a young girl who has AIDS after working as prostitute to feed her two children and is now involved in a support group

The barefoot guide to working with organisations and social change

REELER, Doug
et al
July 2009

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This is a practical, do-it-yourself guide for leaders and facilitators wanting to help organisations to function and to develop in more healthy, human and effective ways as they strive to make their contributions to a more humane society... The guide, with its supporting website, includes tried and tested concepts, approaches, stories and activities. Its purpose is to help stimulate and enrich the practice of anyone supporting organisations and social movements in their challenges of working, learning, growing and changing to meet the needs of our complex world. Although it is aimed at leaders and facilitators of civil society organisations, we hope it will be useful to anyone interested in fostering healthy human organisation in any sphere of life. This resource has a supporting website where additional resources are available

Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers

KERMANSHAHI, S M
VANAKI, Z
AHMADI, F
KAZEMNEJAD, A
AZADFALAH, P
2009

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Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen’s suggestions. Two main themes were abstracted; being the centre of stress circles and being in the midst of life and death. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers’ lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.

Change your life with human rights : a self-advocacy guide for people with disabilities

STEIN, Michael
2008

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This guide provides self-help advocacy advice for people with disabilities. It includes explanations, exercises and resources that provide clarity on the Convention on the Rights of Persons with Disabilities, and outlines how to advocate and influence legislation. This resource would be useful for anyone with an interest in human rights, advocacy and influencing legislation

Good practices for the economic inclusion of people with disabilities in developing countries : funding mechanisms for self-employment

Handicap International
Ed
August 2006

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This report aims to highlight good practices, strategies, tools and operational methods that guarantee the sustainability of projects that support access to funding mechanisms and the self-employment of people with disabilities. More specifically, the study focuses on the use of microcredit enterprises and grants for the start-up and expansion of microenterprises. Developed in partnership with a diverse range of organisations of/for people with disabilities and microfinance providers, the report highlights the significant exclusion of people with diabilities from mainstream microfinance institutions and subsequently presents two solutions: firstly to develop schemes that promote the inclusion of people with disabilites; secondly to develop financial services by organisations of/for people with disabilities themselves. This report would be of relevance to anybody working in the fields of international development, disability or microfinance

Women inspiring women - a peer group in Sri Lanka improves the lives of people with disabilities | Moving forward : toward decent work for people with disabilities|Examples of good practices in vocational training and employment from Asia and the Pacific

PERRY, Debra A
Ed
2003

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This paper is about a Sri Lankan disabled women's organisation, founded by a disabled woman, to empower women through a support network that allows them to exercise their rights and gain access to services, skills training and self-employment. In Sri Lanka, women with disabilities have few opportunities for economic independence and most are confined to their homes, protected by their families from a society that stigmatises them, particularly in rural areas

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