Parents' of Child with Down's Syndrome: Their Care-giving Experiences, Parent - Child Communicative Pattern at Home and Perceived Quality of Life: A Pilot Study
Chan Kim Geok, Post graduate student (at University of Malaya)
Co-author(s): Dr Khatijah Lim Abdullah
Abstract
Background: children with Down's syndrome are frequently associated with
physical problems such as congenital anomalies, a higher mortality rate
caused by infections, a high risk of developing malignancies, visual and
auditory impairment and disruptive behaviour disorders, and autism. They
form the largest group of persons with intellectual disability commonly
challenged by language impairment. At the national level, the latest available
annual reports (for the year 2004 to 2006) from the Malaysia Ministry
of Health (Information and Documentation System Unit) shows that around
600 new cases are reported year, a relatively common cause of disabilities
for children (0-12 years age range). Objectives: to explore experiences
of Malaysian parents with Down's syndrome child related to care
giving, their communicative patterns quality of life. Methodology: This
is a pilot study using cross-sectional, qualitative and quantitative methodological
approach. Data collection was conducted with prior ethical approval and
consent from two participants who were parents with Down's syndrome
child of the Malay ethnic background, from the community –based
rehabilitation (CBR) center. Prior appointment was made for in-depth interviews
and participant observations at their individual homes. Participant-generated
Index (PGI) of quality of life Instrument was also administered during
the second visit to the home. Findings: identified main themes such as
burden of care physically and emotionally; support socially, financially
and from family; levels of understanding related to the future, resources
for information and child's condition; developmental stimulation,
emotional responses initially, acceptance; varying ways of communicative
pattern with child; PGI of Quality of life which showed participants'
QOL at the poorer end. Conclusion: further study of more participants'
care giving experiences will yield better understanding of Malaysian parents
with DS child. The pilot study indicated that rich data can be obtained.
However, there was a need to improve on the interviewer questioning technique
and duration of observation in the main study.