SHIP - Spina Bifida and Hydrocephalus Interdisciplinary Program
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Transcript of SHIP - Spina Bifida and Hydrocephalus Interdisciplinary Program
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Spina Bifida and Hydrocephalus Interdisciplinary Program
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The need
Mbale study
Where CBR is available, the mortality in SB/H children is the same as in the normal population
If not the mortality is extremely high
CBR and lifelong follow up is as life saving as surgery
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Surgery is opening the door to a decent life!
But after that door a full house with many rooms need our attention.
Till now we mainly focussed on surgery, now we want to look in all aspects of long life care
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Care starts even before surgery
• diagnose • will surgery be possible/needed? • referral conditions • information transfer to other professionals Then: Hospitalization and surgery Post-operative care – during and after hospitalization Lifelong care Parent groups Adult involvement
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Development of a concept
Concept note prepared by expert group:
• Surgeon
• Parent
• Paediatrician
• Nurse
• CBR expert
• Adult was missing
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Draft concept note
Two day workshop in Nov 2011 Kampala, Uganda
Concept and tools further developed after input
Try-out of the concept for one year
Next year evaluate and plan the future
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What is S.H.I.P.
A coordinated, multidisciplinary approach towards an individualized care program
Coordinated = SHIP coordinator(s) to ensure communication between stakeholders
Multidisciplinary = covering medical and lifelong care
Individualized = according to needs of the child
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What is S.H.I.P.
Objective: to involve all stakeholders and to improve collaboration in order to ensure continuity and quality of care.
Short term: create efficiencies within current activities (& current budget)
Long term: expand activities
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Stakeholders
• Who? • Surgical hospital
• CBR centre
• Outreach clinic locations
• Parent & peer support group
• But also: other hospitals, health centres, government?
• Role? • Different roles during different phases
• Ownership for activities
• SHIP Coordinators as key communication
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SHIP Coordinator
• At each main SHIP location
• Coordinates multidisciplinary team work
– Team meetings
– Info dissemination / knowledge transfer
• Communicates with:
– Team members
– Other SHIP locations
– Support group
• Data collection & reporting
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Current vs. future Current situation Future S.H.I.P.
Stakeholders Who are involved Who should be involved
Current level of involvement Ideal level of involvement
Achievements SHIP Coordinator & Team
Challenges
Activity domains Which domains covered Which should be covered?
Why (not)? Why (not)?
Challenges
Standardization Protocols & tools used Current tools to be improved?
How to integrate new tools?
Challenges
The needs for your country specific S.H.I.P.
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Implementation Plan
• Needs for your country specific S.H.I.P.
• Next steps
• Planning 1st year
• Follow up: Monitoring & evaluation
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S.H.I.P. Framework & tools
• Framework
• SHIP Coordinator
• Passports
• Standardized information
– Medical protocols
– Leaflets & brochures
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S.H.I.P. Framework CBR centre/Health institution
Surgical hospital Parent support group
Initial Assessment
1st assessment Identification
Referral
Surgical Care Pre-op Op Post-op Discharge
Link parents to support group
Follow-up Outreach Parent/youth meetings & trainings
Home visits Home visits
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S.H.I.P. Passport
• Overview of most important data
• Tool for parents and specialists
• Does not replace hospital/CBR files
• Not meant to duplicate
• Stays with child
• Boys / Girls
• To add locally: – Vaccination card
– Leaflets
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S.H.I.P. Protocols & leaflets Protocols Spina Bifida
Hydrocephalus Operative care Continence mng Skin care Folic Acid Follow-up Transition (Youth)
Leaflets Spina Bifida Hydrocephalus Continence mng Skin care Folic Acid Education Transition (Youth) Parent & Youth Support Groups Family Planning