Impact Of Primary Immunodeficiency Diseases On The Life Experiences Of Patients In Malaysia From The Caregivers’ Perspective: A Qualitative Study

August 8 2022

Publication Details

Title of Publication
Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative Study

Authors
Ruwaydah Ahmed Meelad, Intan Juliana Abd Hamid, Ilie Fadzilah Hashim, Zarina Thasneem Zainudeen, Firdaus Farhani Abu Bakar, Fahisham Taib, Norsarwany Mohamad, Ernest Mangantig, Intan Hakimah Ismail, Amir Hamzah Abdul Latiff & Lokman Mohd Noh

Journal
Frontiers in Pediatrics

Quartile
Q2

Impact Factor
3.569

Article Link
https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full

Abstract Summary

Introduction

Primary immunodeficiency diseases (PIDs) are chronic conditions that affect various aspects of a patient’s life. However, the impact of living with PIDs remains insufficiently described, particularly in the Malaysian context.

Objective

This study aimed to explore the living experience challenges among Malaysian caregivers of patients with PID who were undergoing follow-up at Universiti Sains Malaysia (USM) or who were registered members of the Malaysian PIDs Society.

Methodology

The study was conducted from March 1 to May 30, 2021. Parents of children with PIDs were invited to participate in semi-structured, in-depth interviews at PID clinics in USM.

• Estimated interview duration: approximately 30 minutes

• Mode: Telephone interviews (due to COVID-19 pandemic restrictions)

• Audio recordings were transcribed and translated from Malay into English

• Thematic analysis was performed using ATLAS.ti software

Results

The thematic analysis identified five main themes:

1. Living with fear and anxiety

   • Sickness

   • Psychological issues

   • Fear of infections

   • Hereditary concerns

2. PID healthcare support struggles

   • Health system challenges

   • Treatment issues

   • Diagnostic delays

   • Financial burden

3. Knowledge

   • Educational issues

   • Disease understanding

4. Social constraints

   • Relationship challenges

   • Social isolation

5. Coping mechanisms

   • Acceptance

   • Child health improvement

   • Emotional hygiene

Conclusion

Living with fear and anxiety emerged as the dominant theme affecting the life experiences of Malaysian patients with PIDs. Improvements in healthcare delivery systems and disease education are essential to ensure optimal quality of life for affected patients and their families.