english español français nederlands português italiano
International Federation for Spina Bifida and Hydrocephalus
home search sitemap contact disclaimer
International Federation for Spina Bifida and Hydrocephalus - Homepage

Philosophy of the IF projects

Hydrocephalus in developing countries

Spina Bifida in developing countries

Research in developing countries

Partners and Parent groups

Evaluation of the IF projects

IF publications

Special literature

Partners in development cooperation

 

Developing countries

Introduction

             Solidarity 
             Target groups
             Partners in the South 
             Developmental goals 
             Tangible results 2006

Solidarity
Runa Schoyen from Norway with Amani from Moshi

From a solidarity point of view, IF sees it as an obligation to look beyond borders. If we feel we are an international organisation, we also should expand our activities to the Southern Hemisphere.

A decade ago, IF started its own projects in developing countries. Children with a disability are not a priority in the South. The same is true as far as developmental work is concerned. It is an ongoing process in which IF is trying to translate the latest knowledge of the North into realistic care for the South. Already now, some of the IF projects are developing research programmes which will benefit people with spina bifida and/or hydrocephalus in the South as well as the North.

The aims of the IF projects in the South are:

  • Improve the basic local conditions for the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus by organising appropriate training on all levels;
  • Empowerment of groups of people with Spina Bifida and Hydrocephalus in the South;
  • Social inclusion of people with Spina Bifida and Hydrocephalus in the South and increase the epxertise on rehabilitation and inclusion matters;
  • Increase knowledge on the diagnosis through research.

IF selected many good experts in the South and shares its expertise and knowledge.  The vision of the project is to complement the existing efforts, by building on what has already been achieved by parents and existing service delivery systems.

up
 

Target groups of the project
  • Children with Spina Bifida and Hydrocephalus
  • (primary) caretakers of children with Spina Bifida and Hydrocephalus:   parents/family
  • Caretakers of children with Spina Bifida: professionals

up

The IF network and partners in the South
Stella, spina bifida nurse in Dar es Salaam

IF is a global knowledge network on Spina Bifida and Hydrocephalus and the the worlwide umbrella organisation for people with these disabilities and their families.

Thanks to the solidarity of the Norwegian and Swedish member associations, IF has been able to develop structural and valuable partnerships with local partners in East Africa. 

These partners have the capacity to treat and follow-up, both medical and socially, the children with Spina Bifida and Hydrocephalus. The partners also have capacity to help the parents start building parents groups.

An overview of the official partners in the South:

           Dar es Salaam (Tanzania): CCBRT Disability Hospital
           Moshi (Tanzania): CCBRT CBR Kilimanjaro in cooperation with KCMC
           Kijabe (Kenya): Bethany Kids at Kijabe Hospital (BKKH) 
           Kampala (Uganda): Cheshire Homes Kampala
           Mbale (Uganda): CURE Children’s Hospital Uganda 
           Lusaka (Zambia): CBR Cheshire Homes
           Blantyre (Malawi): Queen Elisabeth General Hospital
           Khartoum (Sudan): Cheshire Homes Khartoum

up

Developmental goals of the project
  • Empowerment of parents of children with spina bifida and/or hydrocephalus;
  • Having ensured correct clinical care and organised medical follow up of the child, the project has now moved on to the post surgical care and the rehabilitation of the children;
  • The management of the neurogenic bladder is an essential step in both the medical health and social integration of the child and has been successfully introduced in all projects. Investment in training of staff on all levels and direct teaching of the parents and if possible the child, has lead to direct results on medical and social levels;
  • Training on all levels and South-South co-operation between different projects continues to be one of the main focuses of the projects. Investment in training and exchange of knowledge in the field will guarantee a better quality of care and a better chance of sustainability of the different projects;
  • The local projects as well as the donor countries take active initiatives to stimulate awareness surrounding the impairments, by producing training and teaching materials, all adapted to the local circumstances;
  • Prevention: all projects are committed to distribute or give access to folic acid to women at extra risk in the project; 
  • As further investigation is necessary to establish primary prevention for the whole population, projects are encouraged to start research studies on the incidence and medical and/or habilitative care of the conditions;
  • In cooperation with the different projects, the first steps have been taken to come to a uniform registration of all data generated in the projects. This exercise will be continued in the coming years;
  • Project managers are encouraged to involve local authorities in their work.

up

Tangible results of the projects in 2006

 

Dar es Salaam (Tanzania): CCBRT Disability Hospital

CCBRT (Comprehensive Community Based Rehabilitation Tanzania) is a private Non-Governmental Tanzanian Society (NGO), registered under the Tanzanian Societies Act, N° SO8261 on October 12, 1994.

The goal ofis to contribute towards poverty alleviation by responding to the lack of accessible and affordable services for disabled people in Tanzania, who are among the poorest of the poor. A survey highlighted an extreme shortage of preventative, curative and rehabilitation services for people living with disabilities, in addition to AIDS patients and orphaned children.

The disability hospital was build with a special ward for Spina Bifida and Hydrocephalus sponsored by the IF -Network. There was a need to have a better impact on the surgical conditions to improve the quality of care.

Official partners since 1998

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  154 hydrocephalus operations (including 40 ETV’s) and 83 closures of back.
  • Organisation of Spina Bifida and/or Hydrocephalus clinics twice a week and 92 mobile clinics to reach other concentration  areas.
  • Follow up of children by multidisciplinary team
  • Intensive follow up and training in continence management (bladder and bowel) of 119 children by team of paediatrician and 2 Spina Bifida nurses.
  • 2 special continence management training weeks for parents and children, with a total of 38 parents reached
  • Organisation of 1 parent meeting with 80 parents reached, focusing on sharing information on Spina Bifida and/or Hydrocephalus to parents
  • Provision of folic acid to all mothers in the ward
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: paediatrician and 2 Spina Bifida nurses

up

Moshi (Tanzania): CCBRT CBR Kilimanjaro in cooperation with KCMC (Kilimanjaro Christian Medical Centre)

Kilimanjaro Community Based Rehabilitation, located on the slopes of Mt Kilimanjaro in northern Tanzania, offers rehabilitation and preventive services for the disabled in their local communities. Kilimanjaro CBR began operating in 1996 and now covers mostly the Kilimanjaro region. 
CBR Kilimanjaro prepares and refers children who need surgery to CCBRT in Dar es Salaam or Kilimanjaro Christian Medical Centre (KCMC – www.kcmc.ac.tz) in Moshi.

KCMC is a referral hospital and covers the following districts: Moshi Rural, Moshi Urban, Mwanga and Hai and Arumeru and Karatu districts in Arusha.

The programme work trough CCBRT –Kilimanjaro, but help s also the families from the other regions.

At KCMC the IF-Network created with Dr M. Oneko at KCMC a neuro pediatric Clinic of Spina Bifida and Hydrocephalus.

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  31 hydrocephalus (shunt) operations and 4 closures of back.
  • Organisation of weekly neuro-clinics and monthly continence clinics
  • Follow up of children by multidisciplinary team
  • Intensive follow up and training in continence management (bladder and bowel) of 52 children by team of paediatrician and 2 Spina Bifida nurses. Training CBR and rehab staff on continence management (12 reached)
  • 2 special continence management training weeks for parents and children, with a total of 22 parents reached
  • Organisation of 7 parent meetings with 70 parents reached. The parent group has democratic elected committee that plans and organises agenda independently, but with support of the project management.
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: top up for paediatrician and Spina Bifida nurse

other partners

Kijabe (Kenya): Bethany Kids at Kijabe Hospital


Bethany Kids at Kijabe Hospital is the children’s ward of Kijabe hospital. It has a 46 bed capacity and has become the referral hospital in Kenya for neurological patients.

The hospital has 13 outreach clinics as far as Dadaab (North of Kenya, border with Somalia).

90% of their patients have Spina Bifida and Hydrocephalus.

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  391 hydrocephalus (shunt) operations and 195 closures of back.
  • Organisation of Spina Bifida and/or Hydrocephalus clinics and mobile clinics in 14 areas spread over the country
  • Follow up of children by multidisciplinary team
  • Intensive follow up and training in continence management (bladder and bowel) of 101 children by team of specialised Spina Bifida nurses.
  • 1 special continence management training session for parents and children (50 reached) and professionals (8 reached)
  • Organisation of 31 local parent meetings spread over 4 sites (Nairobi, Naivasha, Mombassa and Joytown). The leadership of the groups plan the agendas of the meetings, with support from the project management.
  • Provision of folic acid to all mothers in the project
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: 4 Spina Bifida nurses

other partners

 

Mbale (Uganda): CURE Children’s Hospital Uganda


The CURE Children’s Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda.

It works closely together for follow-up of the children operated with the Katalemwa Cheshire Homes of Kampala, in Kampala, Uganda. Focus has been on treatment of and research on Hydrocephalus.

CURE Children’s Hospital of Uganda became the expert on alternative surgery of Hydrocephalus with ETV, making with an endoscope a natural bypass of the fluid in the head.

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  466 hydrocephalus operations (including 284 ETV’s) and 99 closures of back.
  • Organisation of Spina Bifida and/or Hydrocephalus clinics and 30 mobile clinics to reach other areas.
  • Intensive follow up and training in continence management (bladder and bowel) of 104 children by team of specialised Spina Bifida nurses.
  • Follow up of children by multidisciplinary team
  • Three Neurosurgeons(Nepal, Nigeria & Zambia) completed the Program for Advanced Training in Hydrocephalus(PATH), which includes training in the endoscopy (ETV).
  • Intensive follow up and training in continence management (bladder and bowel) of 104 children by team of specialised Spina Bifida nurses.
  • Provision of folic acid to all mothers in the project
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: Spina Bifida nurse, 4 social workers and 1 research assistant

other partners

Kampala (Uganda): Katalemwa Cheshire Homes Kampala


Katalemwa Cheshire Home is a disability rehabilitation centre in Kampala. Spina Bifida and Hydrocephalus children are identified and prepared for necessary surgery. Katalemwa has a structural cooperation with the CURE project in Mbale for shunting, ETV and closures of the back.

After the surgery, the centre provides follow-up.

For the moment, about 250 children are being followed up. Katalemwa

Cheshire Home is the expert in technical aids, producing wheelchairs, sitting aids etc….

  • Assessment of children with Spina Bifida and/or Hydrocephalus: 433 children have been seen in the projects, 187 have been sent to the project in Mbale for operational care
  • Organisation of monthly  Spina Bifida and/or Hydrocephalus clinics in cooperation with the team from the Mbale project
  • Follow up of children by multidisciplinary team
  • Intensive follow up and training in continence management (bladder and bowel) of 78 children by team of specialised Spina Bifida nurses
  • Organisation of 3 workshop on continence management with a total of 28 children reached
  • Organisation of 3 parent meeting with a total of 139 parents reached, focusing on sharing information on Spina Bifida and/or Hydrocephalus to parents
  • Provision of folic acid to all mothers in the project
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: social worker

other partners

Lusaka (Zambia): CBR Cheshire Homes in cooperation with UTH

The IF project at University Teaching Hospital (UTH) is a phase one project, currently only supported by the provision of Chhabra shunts.  The IF liaison person is Margriet Kern whose husband, Ekhart, directs a Cheshire Home in Lusaka.

UTH has 3 neurosurgeons (1 Zambian, 1 Uzbekistani, and 1 Chinese) and 2 paediatric surgeons (both Uzbekistani). This entire group is involved with placement of shunts. In addition, clinical officers in the department also place shunts. Likewise, surgery for the closure of back is shared between the two services (neurosurgery and paediatric surgery). There appears to be no coordination regarding referral or follow up of these patients.  Referral of patients seems to be mainly through the paediatric clinic. Follow up is difficult for many of the patients with shunts because of the large size of the country, with Lusaka being the only centre for managing Hydrocephalus.

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  302 Hydrocephalus (shunt) operations
  • Organisation of general clinics twice a week and special spina Bifida and/or Hydrocephalus clinics 4 times a year
  • 1 workshop on the management of pressure sores, 5 parents reached
  • Organisation of 2 parent meeting with 43 parents reached, focusing on sharing information on Spina Bifida and/or Hydrocephalus to parents
  • Salaries paid by the programme: small top up for clinical officer

other partners

Blantyre (Malawi): Queen Elisabeth General Hospital


The country of Malawi has few physicians. The medical college in Blantyre is only 10 years old, and post-graduate training programs have only just begun in surgery and orthopaedics. For some time, clinical officers have been “the backbone of the health-care system in Malawi” (to quote Professor Eric Borgstein). Needless to say, Malawi has no neurosurgeon. Children with Hydrocephalus have only had access to treatment at Queen Elizabeth Hospital in Blantyre, where shunts were being placed by Dr. Borgstein.

Malawi is a long, narrow country stretching from north to south.  Because of poor infrastructure and poverty, travel is very difficult for most.  This, of course, hampers and delays the arrival of children to Blantyre for treatment, as well as for follow up or the management of any shunt-related complications.  As Dr Warf has found in Uganda, Hydrocephalus is very common in Malawi, the majority of which seems to be caused by meningitis/ventriculitis in infancy.

  • Operative care and post-operative follow up of children with Spina Bifida and/or Hydrocephalus:  433 Hydrocephalus (shunt) operations and 4 closures of back. The project coordinates shunt surgeries in 2 other centres in the country:  Zomba and Lilongwe.
  • Organisation of weekly Spina Bifida and/or Hydrocephalus clinics
  • Follow up of children by multidisciplinary team
  • Intensive follow up and training in continence management (bladder and bowel) of 11 children by specialised Spina Bifida nurse. Training of Spina Bifida nurse in continence management by project in Dar es Salaam.
  • Organisation of 3 parent meeting with average of 100 parents per meeting. Meetings focused on sharing information on Spina Bifida and/or Hydrocephalus to parents
  • Provision of folic acid to all mothers in the project
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: 1 Spina Bifida nurse and 4 clinical officers for shunt operations

other partners

Khartoum (Sudan): Cheshire Homes Khartoum


Khartoum Cheshire Home is a rehabilitation centre for children with a physical disability. It was established in 1974 and is registered in Sudan as NGO.
More than 8000 children were taken care of up to now, most of them paralyzed. There are two main departments at Khartoum Cheshire Home: in-patients and out-patients. 50 children can be lodged at the Home when recommended by volunteer doctors.

The following services are provided to the patients: physiotherapy, surgery, speech therapy, hydrotherapy, orthopaedic workshops, clinics, schooling and community based rehabilitation. They also offer social activities.

The IF –Network project is mainly focused on continence management and parent groups but started recently also a shunting programme.

  • Organisation of rehabilitation and follow up of children with Spina Bifida and/or Hydrocephalus. Transfer of children that need operation to government hospital: assessment of children by general doctor, who then plans referral.
  • Intensive follow up and training in continence management (bladder and bowel) of 61 children by specialised Spina Bifida nurse
  • Organisation of 9 parent meeting with average of 30 parents per meeting. Focus on sharing information on Spina Bifida and/or Hydrocephalus to parents and self independence of children and parents
  • Provision of folic acid to all mothers in the project
  • Participation in yearly IF African workshop
  • Salaries paid by the programme: Spina Bifida nurse and project coordinator

other partners 
 

subscribe to our newsletter

 

 

IF Neurosurgery

Flour Fortification Initiative

Council of Europe

Include Everybody

European Year of Intercultural Dialogue

IFSBH Annual Report 2007

Global Partnership for Disability and Development

Folsaeure

International Disability and Development Consortium