1. The Developmental Intervention Clinic UTH-PCOE Lusaka, Zambia REPSSI PSS Forum 2 September 2015, Victoria Falls, Zimbabwe A. Kabwe-Grollnek, & S. Shanungu

2. Outline 1.Case Report: how health and socio economic factors affect the well being of young children with special needs. 2.The psycho social needs of young children with special needs and their families are varied and mulitple 3.How a multidisciplinary model supports the well being of young children and their families

3. MARY Background 6y F. Referred for challenges in communication & learning Lives with: – Biological mother & 1 younger sister – Father left the family soon after birth of second child Mother HIV positive on HAART. – Unemployed & family has no regular income Pregnancy, delivery & perinatal period – Referred uneventful – No PMTCT strategies

4. MARY Developmental milestones: – Delayed in all domains Past medical history: – 2mo- child severely & chronically ill – 13mo- admitted for severe malnutrition & recurrent febrile episodes. Diagnosed with HIV & started on HAART – 3yr-onset of seizures Follow up care & treatment – Defaulted several times: on 2 nd line ART – Did not report for medical attention until 6 years of age

5. Factors Affecting Mary’s Development HIV infection in prenatal period & infancy – Recognised cause of developmental delay and neurological disorders in infected children (HIV encephalopathy) Untreated epilepsy (uncontrolled seizures) – Further neurological damage with significant behavioural and cognitive co-morbidities Severe malnutrition & chronic illness – Co factors in developmental delay & cognitive impairment Psychosocial Factors – Parental absence – Maternal health – Support – Socioeconomic insecurity Poor stimulation & emotional deprivation

6. Challenges Faced by Young Children with Special Needs & Their Families Acceptance Support Costs Time commitment – 24/7 consistent care – Frequent hospital visits – Difficulty maintaining employment Impact on parental relationship Well being of other siblings Limited rehabilitation services Challenges with school enrolment

7. Addressing the Psychosocial Needs of Families Psychosocial needs of adults have a direct impact on children Concurrent interventions need to be provided through parent or family focused intervention Programs should: – Focus on strengthening families as responsive and protective spaces for children Action for rights of children-resource pack. Foundation Module 7 Psychosocial Support, 2009. www.arc-online.org

8. Determinants of Wellbeing in Early Childhood Development Health & socio economic factors affect development Toxic environments = poor development Importance of quality caregiver-child interactions Siddiqui,A., Irwin,L., Hertzman C. (2007)

9. The Developmental Intervention Clinic Provide support to: – Individual child’s neurodevelopmental needs Medical Rehabilitative – Caregiver’s psychosocial needs Formal counselling Informal counseling

10. The Developmental Intervention Clinic Early identification & intervention of children with neurological complications & other special needs Target age group: 0 – 7yrs – Developmental delay/disability, HIV, Epilepsy, SCD Parent focused – Parent’s are key players in intervention – Supports parent-child relationship – Quality interactions – Promote play & interaction with child

11. Referral Intake Neurological assessment Therapy Assessment Cognitive skills Occupational therapy Physiotherapy Speech & language Challenging behaviour Psychosocial evaluation for family members Intervention Learning support Fine & gross motor development Communication skills Behaviour management Psychosocial support Individual and group therapy (parent’s support each other) Multidisciplinary Support

12. Common Neurological Conditions 25%: CP (neurological sequelae) 50%: birth asphyxia 50%: kernitterus, neonatal meningitis/sepsis & CNS infections 9%:Global Developmental Delay & Neurological Disorder HIV related 20%: Epilepsy 80% symptomatic Speech Delay 7 % Isolated 24% associated with other neurological condition 8 %: Autism Spectrum Disorder 12%: ASD features 3%: ADHD 6%: ADHD features 8% Behavioral Disorders 3%: Neurological Sequelae (CVA) of SCD 3%: Genetic Syndromes 12 %: Global Developmental Delay of Unknown Origin

13. Challenges of Families at the D.I.C. Not in school 79% Meeting basic needs 31% Married 80% Single 13% 5+ dependents 61%

14. Mary’s Assessment & Intervention Mother’s Main Concerns Communication – single words only Behaviour: – Hyperactive & limited attention – Unaware of danger – Follows strangers (asks for money or food) – Has left home on several occasions-missing for a few days at a time

15. Assessment Findings Neurological evaluation Disinhibition Hyperactivity Short attention span Inability to complete age appropriate simple tasks Stunted: (height/age 2DS/3DS below the median) Diagnosis: RVD in HAART – Developmental delay – Behavioural disorder (ADHD features, disinhibition) – Speech & cognitive impairment – Symptomatic epilepsy Speech & Language Assessment Expressive language limited to 10 – 20 single words Articulation challenges Receptizve language: below average for age – Unable to follow 2-step directions

16. Assessment Findings Cognitive Assessment Poor performance in abstract reasoning, cube design & analogical reasoning – Universal Non-Verbal Intelligence Test (UNIT) full scale intelligence score: 46 – 3 standard deviations below mean

17. Assessment Findings Diagnosis Communication, behavioural, cognitive Disorder The Impact Heavy consequences in: – Educational opportunities – Social integration High risk of child abuse High risk of drug resistance (poor compliance)

18. Mary’s Intervention Counselling with Mother – Importance of adherence to medication – Prepare for disclosure of child’s status – Nutritional counselling Parent training: – Strategies to reduce dangerous behaviour – Strategies to enhance communication and social skills Developed in collaboration with parent Assist in educational support Address medical concerns (HIV, epilepsy, malnutrition)

19. Conclusion Multidisciplinary & targeted interventions can greatly improve psychosocial well being and neurodevelopmental outcomes

20. The Developmental Intervention Clinic Alice Kabwe Grollnek – Clinic coordinator – atkabwe@gmail.com Sandra Shanungu – Psychosocial counsellor/Admin – inutushan@gmail.com> Location: – Paediatric Centre of Excellence University Teaching Hospital, Lusaka Zambia – 1 Nationalist Road, Lusaka Zambia Tel: +260211 257 535/6 Mobile: +26097 4595 361