Charles Masulani1, Sophie Allin2, Devlin Silungwe3
Zelipher Chimulala4.
Center; House of Hospitality.
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
• 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:
Developing worldwide leadership
Generating evidence-based practices;
Increasing country capacity; and
Implementing programs that are based on principles of equality and
equity to reach Millennium Development goal 4.3
• 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
• To gain qualitative insight into what aspect of
support guardians and families would value most
from a service providing care for children with
• 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
• SPSS was used to analyze quantitative data, content analysis
was used to analyze themes emerging from qualitative data.
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
• 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.
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
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.
P. Values for ChiPredictor
Masculine gender
Educational status
Not being in school
Parents employment
High density areas
Difficulties at birth
Childhood illness
Presence of HIV S & S
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.
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.
Study limitations
• This was a cross-sectional study and hence difficult to
determine the causal inference on the associated factors for
• 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.
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 &
• 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.

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