Maharajgunj Nursing Campus, Institute of Medicine, Tribhuvan University, Kathmandu Nepal.
National Academy of Health Sciences, Bir hospital, Nursing Campus.
J Nepal Health Res Counc. 2023 Jul 20;20(4):977-982. doi: 10.33314/jnhrc.v20i4.4415.
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.
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.
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).
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.
唐氏综合征是最常见的与智力障碍相关的染色体疾病。作为残疾儿童的主要照顾者，父母在日常生活中面临着诸多挑战。本研究旨在了解照顾唐氏综合征患儿的母亲的负担。
本研究为一项描述性的横断面研究，在尼泊尔唐氏综合征协会登记的 96 名唐氏综合征患儿的母亲中进行。采用目的抽样技术收集数据。采用改良照顾者负担指数工具通过访谈收集数据。数据收集于 2021 年 6 月 14 日至 8 月 1 日进行，采用描述性和推断性统计方法进行分析。
研究结果表明，大多数母亲（77.1%）的照顾负担水平较高。研究中 89.6%的母亲总是对孩子的病情感到不知所措。超过一半（55.2%）的母亲在照顾孩子时总是经济拮据，57.3%的母亲总是调整工作，60.4%的母亲总是需要在情绪上做出调整。同样，53.1%的参与者总是觉得照顾孩子是一种身体上的负担。照顾负担与分娩年龄显著相关（p 值=0.008）。
研究表明，患有唐氏综合征的孩子的母亲往往有较高的照顾负担，且与分娩年龄有关。因此，建议医疗保健提供者（包括相关部门）开展各种方案，为照顾者提供支持，以减轻他们的负担，并在社区开展与唐氏综合征预防措施相关的提高认识方案。
