ICED Newsletter: August 2017

Dear all,

Summer is in full swing and I am sure that many of you are enjoying your holidays, and are scattered across the globe.

I am writing this newsletter from Brazil, where I am based for one month to work on various projects around babies affected by Zika, as well as around rehabilitation in general. I have been having a wonderful time seeing projects in action and deepening collaborations. This week we have started training facilitators for our support programme for carers of babies with Congenital Zika Syndrome. We are training Expert Mothers and Therapists to together deliver a structured programme to parent groups in the communities. The programme is based on the “Getting to Know Cerebral Palsy” programme, also developed by ICED. See “Focus on…” section below for more on our work on Zika.

We have good news at ICED! Joerg Weber has now passed his PhD, which focused on the development of participatory tools for evaluating Community Based Rehabilitation. Islay Mactaggart has also passed her PhD subject to minor corrections. Her research focused on different aspects of measuring disability, and assessing the impact of disability, in Cameroon and India. Congratulations to both of them!

We are hiring! We are looking for a new project coordinator within the Disability & Eye Health Group. The role holder will work across the International Centre for Eye Health and the International Centre for Evidence in Disability. The closing date is Tuesday 15th August 2017.  Details Here

Best wishes,

Hannah Kuper

International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine

We have reached more than 1200 followers on Twitter – please follow us @ICED_LSHTM.

Publications and Presentations

  • A new blog was published for the Washington Group series by Islay Mactaggart and Morgon Banks. It focussed on the use of the Washington Group Questions in Surveys and draws on experiences from Cameroon, India and Guatemala. Read Here
  • Maria Zuurmond and colleagues conducted in-depth interviews with 31 families, as well as key informant interviews and focus group discussions to explore Childhood disability in Turkana, Kenya. Specifically, they focused on understanding how carers cope in a complex humanitarian setting. The paper was published in the African Journal of Disability and is now available in Pubmed. Read Here
  • Joerg Weber and colleagues at the WHO and beyond worked to develop and test indicators for monitoring Community-Based Rehabilitation. Ultimately 13 base indicators and 27 supplementary indicators were identified for use. The paper describing the process and outcome is published in Plos One: Access Here
  • The ICED Training Manual ‘Getting to Know Cerebral Palsy’ is now available in French Read Here
  • In collaboration with Plan International, we developed guidelines for consulting with children and young people with disabilities. These have now been translated so that they are available in English, French and Portuguese. Access Here

Focus on: Zika-related activities at ICED

The Zika epidemic struck in 2015 and has now receded. What has been left are thousands, perhaps tens of thousands, of babies affected by Congenital Zika Syndrome and their families who care for them, mostly in Brazil. The Syndrome has variable presentation, and can include microcephaly (where the baby has a very small head) as well as broad-ranging developmental delay. ICED has been working on a number of projects related to Congenital Zika Syndrome, including:

  • Social and Economic Impact of Congenital Zika Syndrome: This project uses quantitative and qualitative data collection to explore the broad impact of Congenital Zika Syndrome for carers (e.g. economic impact, depression and anxiety) as well as for people in the community (e.g. reproductive decision making) and pregnant women. Funded by Wellcome and DfID and ZikaPlan (EU).
  • Development of Parent Based Intervention for Congenital Zika Syndrome: We are developing and testing a 10 session training programme to support the needs of and empower carers of babies with congenital Zika syndrome. The sessions are conducting in the community and include practical aspects of care, such as feeding and positioning, but also focus on fulfilment of rights and emotional support for carers. Funded by Wellcome and DfID.
  • Health care provider training: An identified gap that the Zika epidemic has revealed is the lack of knowledge of health care providers around childhood disability. We are working with partners in Brazil to develop an Online Training course around childhood disability, using a rights based perspective, and providing practical guidance. Funded by Newton Fund.Upcoming

Seminars and Events at LSHTM

We are taking a break over the summer, and will launch the ICED Disability Seminar Series 2017 – 2018 in September. In the meantime, you can find audio with power-point of past seminars available on our website

Other news

We are hiring! We are looking for a new project coordinator within the Disability & Eye Health Group. The role holder will work across the International Centre for Eye Health and the International Centre for Evidence in Disability. The closing date is Tuesday 15th August 2017.  More Details Here

Work Experience Programme at ICED

We have launched our work experience programme for people with disabilities seeking experience in research. Please contact us if you would like to find out more about joining our team in this capacity: .

Upcoming Conferences

  • Global Evidence Summit, Cape Town, South Africa, 13-16 September, 2017. Information Here
  • Second International Developmental Pediatrics Association Congress. Mumbai, India, 7-10 December 2017. Read Here
  • 2018 Australasian Academy of Cerebral Palsy and Developmental Medicine conference, Auckland, New Zeeland 21-24 March, 2018. Read Here This conference aims to have increased emphasis on leadership development in this area in LMIC, with scholarships available.

We are making every effort to make all our research findings widely available, and have launched a Resource Webpage where you can find our key reports and manuals. Resource Website Here

Have you seen this?

Look up this great resource by UCLA Public Health that maps constitutional and international rights globally, and can be disaggregated by disability, amongst other things. View Here

And to make you Smile… A video of Pharrel’s Smile in Sign Language: View Here

Comments are closed.