1. THE PREVALENCE OF DISABILITIES AMONG CHILDREN IN MZUZU, MALAWI: A CROSS SECTIONAL DESCRIPTIVE STUDY By: Charles Masulani 1, Sophie Allin 2, Devlin Silungwe 3 Zelipher Chimulala 4. 1 Programs; 2 Child Development Center; 3 Psychosocial Center; 4 House of Hospitality.

2. Introduction to Disability in Malawi A 1983 National Statistical Office (NSO) Survey of Handicapped Persons in Malawi, placed the rate of disability in the population at 2.9% and 10 years later it was estimated at 2% and in 2003 at 4.18%. The majority of research is completed in developed countries, two reasons highlighted for this are: – Lack of formal assessment leading to a difficulty of data collection – High infant and child mortality rates reduce the priority of childhood disabilities among health providers and researchers. The Bellagio Group on Child Survival called on all international organizations and funding agencies to support programs for disability by: 1.Developing worldwide leadership 2.Generating evidence-based practices; 3.Increasing country capacity; and 4.Implementing programs that are based on principles of equality and equity to reach Millennium Development goal 4.3

3. Objectives To gain statistical data, giving an estimate of the number of children aged 0-18yrs identified as living with a disability, (intellectual, physical and self care problems) in the Mzuzu city. To gain qualitative data about the perceived burden of care on guardians and families living with and providing care for a child with disabilities in Mzuzu city. To gain qualitative insight into what aspect of support guardians and families would value most from a service providing care for children with disabilities.

4. Method Design: Cross-sectional descriptive study. 780 children from five randomly chosen townships of Mzuzu were sampled by systematic sampling. Every third household was systematically sampled. Research assistants interviewed parents and screened their last born child who was the target in this survey. A Questionnaire based on ICF, and Ten Question Questionnaire (TQQ) on disability and Portage Assessment tool for measuring disability, and a questionnaire measuring social-demographic and other predictive factors for disability were verbally administered, to consenting parents, by health professionals recruited as research assistants. Two focus group discussions were also conducted, by the Clinical psychologist, with 16 mothers having children with disabilities. SPSS was used to analyze quantitative data, content analysis was used to analyze themes emerging from qualitative data.

5. Results ctd/.. Social demographic characteristics of the children: The mean age range was 5.038789 years, with almost equal numbers of boys and girls. 95% of the children were delivered at full term; 3.7% of the children were delivered at home by untrained midwives; 5% of the mothers of the children had significant illness while pregnant; 4% of the children were had complication at birth; 7.5% of the children had early childhood illness while 1.9% showed signs of HIV. About 53% of the children were in school; 46% of had not yet been in school; while only 10 (1.8%) had stopped going to school. About 80% were coming from a high density area and 80.2% came from families with both parents alive, the rest were either orphaned or from single/separated parents.

6. Results ctd/.. Prevalence of Disability: 154 out of the 780 children had at least a disability, representing a 19.7% prevalence. However, the questionnaire had three section capturing different disabilities and these were found as follows:  17.1 % on physical disability  15% on intellectual disability  10.4 % on inability to do self care

7. Results ctd/.. Associated factors for Disability:  There were a number of variables that we checked there association with disability like: Gender; Education; Occupation for parent; Type of parent's family; Residence Type; Number of children in the household?; Was pregnancy full term?; Any significant illness during pregnancy; Was birth Not by trained personnel; Any difficulties at Birth?; any childhood illnesses& HIV. FactorP. Values for Chi- test Predictor Gender0.05Masculine gender Educational status0.000Not being in school Parents employment0.000Professionals Residence0.000High density areas Birth0.001Difficulties at birth Childhood illness0.000Illnesses HIV0.04Presence of HIV S & S

8. Results ctd/.. Themes on burden of care  Stigma & Misconception of disability & causes  Blamed of promiscuity; rituals; family planning meds; failed abortions; fear & failure to push during labor; HIV status; punishment from God etc.  Stigma when they move around with child, leading locking them up cant socialize with others.  Relationship disruptions  Desertion or divorce due to burden of care and demands.  Moral guilt on part of husband not to divorce  Unable to attend other social obligations.  Physical burden - Weight when carried on the back  Psychological burden- six mothers reporting being depressed with having a disabled child  Perceived needs for those with disabled children - Physical therapies, Rehab equipment, Devices like hearing aids, Social economical supports like supplementary food stuffs; finances/loans, Special Needs Education and Mother support groups.

9. Study implications The huge prevalence calls for support to ratify the Disability Policy in Malawi and to encourage access to community facilities for those with disabilities to ensure that those with disabilities live a quality of life. There may be need to replicate the study in randomly selected districts in all three regions in Malawi to gain a representative national prevalence. There is a need for increased education in the community to reduce stigma and support for guardians to help reduce the burden.

10. Study limitations This was a cross-sectional study and hence difficult to determine the causal inference on the associated factors for disability The tool used was a self developed tool. However, tool was examined by a group of health professionals working with children in Malawi & UK and some milestones were given a generous girth due to it being widely accepted that compared to children in ‘a developed country’ a disproportionally high number of children in Malawi will register with cognitive delay due to lack of exposure to education and opportunity at an early age (pre 6 yrs). Training was completed with the research assistants prior to use and the milestones measured were taken from the Portage Assessment tool, the TQQ and the ICF.

11. Recommendations for services in Malawi These study findings: The huge prevalence of disability reiterates the need for disability services in Malawi i.e.: – Early home based services (portage); Special needs education and prevocational training; Physical therapies; community inclusion; Nutritional supplementation; and sports & recreation. The amount of stigma and community misconception of causes of disability call for an additional component of community interventions like: – Increased Community based clinics – Community based education in schools, community gatherings, churches, water kiosks with volunteers. – Community education using radio and other media The association with poverty calls for more social-economic support for families who care for a child with disability.