Date of Award

12-2023

Degree Type

Thesis

Degree Name

Master of Health Policy and Management

First Advisor

Dr Laila ladak

Second Advisor

Dr Muhammad Asim

Third Advisor

Dr Salman Kirmani

Department

Community Health Sciences

Abstract

Background: Down syndrome, also known as trisomy 21, is a genetic disorder recognized as a significant contributor to intellectual disabilities in children. Children born with Down syndrome often face multiple cognitive and physical challenges. These challenges faced by caregivers/ parents encompass various aspects. Literature suggests that there are many factors that may influence caring for a child with DS inclusive of: Financial constraints of healthcare, social and cultural stigmatization, lack of medical guidelines addressing and counselling parents. Furthermore, there are communication barriers between healthcare providers and caregivers leading to sub-optimal care for these children. This study was aimed to understand the experiences and perceptions of caregivers accessing healthcare services for children with Down syndrome, as well as the experiences and perceptions of healthcare providers offering healthcare services to these children in Karachi, Pakistan.
Methodology: An Exploratory qualitative study design (EQD) was employed to obtain rich contextual data for the purpose of this research. A total of 23 In-depth interviews were conducted with the study participants that comprised of 10 caregivers (mothers/fathers) and 13 healthcare providers (paediatricians and therapists). These participants were recruited through a purposive sampling technique and data was collected through a semi structured interview guide separately tailored for each category with open ended questions. In-depth interviews allowed for a thorough exploration of their experiences, perceptions, and the barriers/facilitators encountered while seeking or providing healthcare services. The research took place at two primary locations: A private NGO and a tertiary care hospital in Karachi, Pakistan. The collected data underwent a deductive content analysis (QICA), guided by the socio-ecological framework, to comprehensively explore the various factors influencing healthcare services for children with Down syndrome in Pakistan.
Results: The study's findings provided valuable insights into the challenges faced by caregivers and healthcare providers when trying to access/ provide healthcare to children with Down 11 syndrome in Karachi, Pakistan. Through qualitative analysis of interviews with caregivers and healthcare providers, the study uncovers insights into the “systemic, infrastructural, and societal factors” influencing the provision of care for children with Down syndrome. At the intrapersonal level, Caregivers described intense emotional journeys post-diagnosis, characterized by stages of grief, while healthcare professionals also narrated to have observed the initial shock and hesitance in accepting the diagnosis amongst families. At the interpersonal level, caregivers expressed frustration with delays in diagnosing Down syndrome, attributing responsibility to healthcare providers, who in turn acknowledged systemic challenges in diagnosis. Additionally, there were disparities in understanding and empathy from healthcare providers, leading to varied experiences of care and support among caregivers. Organizational level challenges included financial constraints and heavy reliance on NGOs due to high healthcare costs, alongside difficulties in accessing resources and services. Community level factors included the necessity for families to relocate for better care, confronting social stigma, and battling cultural misconceptions about Down syndrome, highlighting the urgent need for improved public awareness. From a policy level standpoint, the research emphasized the importance of establishing specialized guidelines, creating a centralized Down syndrome registry, and focusing on educational needs. This highlighted the role of socioeconomic status in the accessibility of healthcare and education for children with Down syndrome.
Conclusion: The study concludes by emphasizing the urgent need for policy reforms and targeted interventions to improve healthcare services for children with Down syndrome in Pakistan. These changes are crucial for ensuring equitable access to quality healthcare for this vulnerable population, thus enhancing their quality of life and integrating them more fully into society.

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1

Last Page

85

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