Burden of Care among Mothers Having Children with Down Syndrome.

BACKGROUND: Down syndrome is the most common chromosomal disorder associated with mental retardation. Parents who are the primary caregivers of a child with a disability face numerous challenges in their day-to-day life. The objective of the study was to find out the burden of care among mothers having children with down syndrome. METHODS: A descriptive cross-sectional study was carried out among 96 mothers having down syndrome children enrolled in the Down Syndrome Society, Nepal. Purposive Sampling technique was adopted for data collection. The Modified Caregiver Strain Index tool was used to collect data through interview. Data were collected from June 14, 2021 to August 1, 2021, which was analyzed by using descriptive and inferential statistics. RESULTS: Findings revealed that majority of the mothers (77.1%) had high level of burden of care. Majority (89.6%) of the mothers involved in the study were always overwhelmed about their child's conditions. More than half (55.2%) of the mothers were always financially strained in care giving, 57.3% had always done work adjustments and 60.4% of mothers always had emotional adjustments to be made. Similarly, 53.1% participants always felt that care giving was a physical strain. Burden of care was significantly associated with the age of delivery (p value= 0.008). CONCLUSIONS: The study concludes that mothers having children with down syndrome tend to have high level of burden of care and it is associated with the age at delivery. Therefore, health care providers including concerned authority are recommended to conduct different programs to support the caregivers in order to reduce their burden as well as to raise awareness program related to preventive measures of down syndrome in community.

The Risk Factors of Cerebral Palsy among the Children Attending a Children's Hospital.

BACKGROUND: Cerebral Palsy is a disorder of movement and posture caused by nonprogressive abnormal brain function. It is a lifelong condition and one of the most common causes of physical disability in children. The objective of this study was to find out the risk factors associated with cerebral palsy among children. METHODS: A case control study was carried out among 330 children where cases and controls were taken in the ratio of 1:2. Cases included children diagnosed with cerebral palsy and attending neurological out-patient department of a Children's Hospital in Kathmandu, Nepal and control included children not having cerebral palsy and attending medical out-patient department of the same hospital for other medical problems. The data were collected from November 29, 2017 to May 20, 2018 by using a pretested interview schedule. The findings were analyzed using frequency, percentage, mean, standard deviation and chi square test and odds ratio. RESULTS: Findings revealed that about one-fourth (24.5%) cases were diagnosed to have CP within one year of age. In terms of sex majority (63.6%) of the cases were male and majority were the first born children. Findings also revealed that infection during pregnancy (OR:2.9, CI: 1.1-7.5), family history of cerebral palsy (OR:5.6, CI: 1.4-21.8), instrumental delivery (OR: 10.9, CI:2.3-50.6), not crying immediately after birth (OR: 17.3, CI: 8.6-34.6), were significantly associated with cerebral palsy. CONCLUSIONS: Most of the identified risk factors are preventable and controllable through proper antenatal and skilled intranatal care. Thus, every pregnant woman should receive proper care during pregnancy as well as during delivery for the prevention of the identified risk factors.

Health Related Quality of Life of Children with Congenital Heart Disease Attending at Tertiary Level Hospital.

BACKGROUND: Congenital heart disease is one of the common congenital anomaly among the children affecting growth and development of the child and increasing susceptibility of the child to failure to thrive. The objective of the study is to find out the overall health related quality of life of children with congenital heart disease. METHODS: A descriptive cross sectional study was carried out among 150 children with congenital heart disease attending in the pediatric out-patient department of Shahid Gangalal National Heart Centre, Bansbari, Kathmandu. The data was collected within the period of 2017/07/16 to 2017/08/16 using purposive sampling technique. Data was collected through interview technique using semi structured questionnaire. Collected data were entered in Statistical Package for Social Science 16 version and analyzed by using descriptive and inferential statistics. RESULTS: The study findings revealed that more than half (52.7%) of the children had satisfactory overall health related quality of life. Health related quality of life is significantly associated with age group of the child (p=0.018), and education of mother (p=0.017)). CONCLUSIONS: It can be concluded that more than half of the children tends to have satisfactory overall health related quality of life.Ventricular septal defect is the commonest congenital heart disease. The health related quality of life of children with congenital heart disease tends to be better among those with educated mother and increasing age of the children. Therefore, awareness raising of mothers related to disease condition and care of children with congenital heart disease through mass media or proper intervention program might help to promote the quality of life of children with congenital heart disease.