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Medication management for people with disabilities

SINGLECARE
September 2019

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This guide provides tips for people with disabilities and their caregivers to properly handle prescriptions and manage medications. Practical advice is given on:

  • How to read medication labels
  • Managing medications at home
  • Medication strategies for people with visual impairments
  • Medication management for people with a physical disability and/or mobility limitations
  • Medication management for people with intellectual disabilities
  • Tips for effective medication management as the caregiver of a person with a disability

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.

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

Guidance on disability inclusion for GBV (gender based violence) partners in Lebanon: outreach, safe identification, and referral of women, children and youth with disabilities

WOMEN'S REFUGEE COMMISSION
UNICEF LEBANON
February 2018

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This guidance, and the associated toolkit, are designed to support frontline workers, community volunteers, and mobilizers and their supervisors who are working in GBV prevention and response to foster inclusion of persons with disabilities in their community activities. It includes guidance, key actions and tools to improve accessibility of existing community processes and activities relating to GBV. This resource has been developed based on the findings of a needs assessment conducted in 2017 which confirmed that women, children and youth with disabilities in Lebanon and their caregivers are facing a range of GBV-related risks.

Caregivers' views on stigmatisation and discrimination of people affected by leprosy in Ghana

ASAMPONG, Emmanuel
DAKO-GYEKE, Mavis
ODURO, Razak
January 2018

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In Ghana, the social interpretation of leprosy regardless of the language, culture and tradition engenders stigmatisation and discrimination that leads to social rejection and exclusion of persons who have been cured of the disease. Often, these persons are cared for by relatives who happen to live with them in a confined place. From the views of these caregivers, this paper identifies areas of stigmatising and discriminatory tendencies against people affected by leprosy who reside in a Leprosarium in Accra. A qualitative interview with semi-structured interviews were conducted for twenty caregivers.

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

African Journal of Disability Vol 7 (2018) - Special collection: Disability and inclusion in Africa - The role of assistive technology

2018

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This journal provides

  • Nine original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors. 
  • Three review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities.
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

A situational analysis of disability and aging in Myanmar

ZEITZER, Ilene
2018

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The interaction of aging and disability is explored in the context of Myanmar. Blindness and deafness data are taken from the census. Carer givers and the family are discussed. Goverment and civil society responses are also discussed.

A briefing paper is also available.

Defying the barriers

KHONDKAR, Laila
HAQUE, Reazul Md
January 2018

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Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

 

The research topics were:

  • Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
  • The Vulnerabilities of Children with Disabilities from Low-income Households
  • Social Protection Schemes Relevant to Children with Disabilities and their Families 

 

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Innovations In Dementia

ROUTLEDGE, Martin
SANDERSON, Helen
BAILEY, Gill
October 2016

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This book offers concrete ideas and examples to those interested in driving a radically different approach to supporting people with dementia and their families. "We have explored a number of approaches with people who have been leading their development. We have been keen to look at both approaches that emerge from working directly to improve support for people with dementia and others that have different roots, but we think are potentially very transferable. None of the approaches is yet being used at any significant scale". Discussions and examples are all UK based. There is an introduction detailing current problems and issues with care and support for people with dementia. 10 approaches are described for housing and support, 4 concerned with enabling people to have good days and 7 associated with enabling people to connect with their community. 

Dignity in mental health : Psychology & mental health first aid for all

WORLD FEDERATION FOR MENTAL HEALTH (WFMH)
October 2016

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‘Dignity in Mental Health-Psychological & Mental Health First Aid for All’ is designed to enable us to contribute to the goal of taking mental health out of the shadows so that people in general feel more confident in tackling the stigma, isolation and discrimination that continues to plague people with mental health conditions, their families and carers. Key messages concerning Mental Health First Aid include: all members of the public can learn basic skills to help people with mental health problems; we need to aim to have large numbers of people trained throughout the world to be able to provide mental health first aid; parity is needed with the provision of physical first aid.

Evaluation of the feasibility and acceptability of the ‘Care for Stroke’ intervention in India, a smartphone-enabled, carer-supported, educational intervention for management of disability following stroke

SURESHKUMAR, K
MURTHY, G V S
NATARAJAN, S
GOENKA, S
KUPER, H
February 2016

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This study aimed to identify operational issues encountered by study participants in using the ‘Care for Stroke’ intervention and to evaluate the feasibility and acceptability of the intervention. ‘Care for Stroke’ is a smartphone-enabled, educational intervention for management of physical disabilities following stroke. It is delivered through a web-based, smartphone enabled application (app). It includes inputs from stroke rehabilitation experts in a digitised format. Sixty stroke survivors discharged from hospital in Chennai, South India, and their caregivers participated in the study. The preliminary intervention was field-tested with 30 stroke survivors for 2 weeks. The finalised intervention was provided to a further 30 stroke survivors to be used in their homes with support from their carers for 4 weeks. Field-testing identified operational difficulties related to connectivity, video-streaming, picture clarity, quality of videos, and functionality of the application. Assessment was carried out by direct observation and short interview questionnaires. 

 

 

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal

ZUURMOND, Maria
et al
December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal. The research looks at the experiences of 21 children aged 6 to 16 years (8 of them had dropped out of school while one had never been enrolled) through in-depth interviews conducted with 21 families (20 caregivers and 13 children), 9 key informant interviews, and visits to two special schools and one integrated school. The report presents the findings and makes recommendations for the way forward

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal : executive summary

December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This executive summary report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal

Caring for people with intellectual disabilities in poor rural communities in Cambodia : experience from ADD International

CORDIER, Sylvie
October 2014

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This article explores the impact of ADD International’s project in Cambodia, which aimed to support communities to learn more about persons with intellectual disabilities and support them in their daily life. The article has a particular focus on how this work affected carers, the majority of whom are women

Gender & Development, 22:3

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

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This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

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