Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study

• Main Authors: Ahmed Meelad, Ruwaydah, Abd Hamid, Intan Juliana, Hashim, Ilie Fadzilah, Zainudeen, Zarina Thasneem, Abu Bakar, Firdaus Farhani, Ismail, Intan Hakimah
• Format: Article
• Published: Frontiers Research Foundation 2022
• Online Access: http://psasir.upm.edu.my/id/eprint/101799/; https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full

Introduction: Primary immunodeficiency diseases (PIDs) are chronic diseases that affect the various aspects of a patient’s life. However, the impact of living with PIDs is poorly described. Objective: This study aimed to explore the living experience challenges among the Malaysian caregivers of the patients with PID who underwent a follow-up in the Universiti Sains Malaysia or those registered members of the Malaysian PIDs Society. Methodology: The study was conducted from March 1 to May 30, 2021. The parents of children with PIDs were invited to participate for a semi-structured in-depth interview at the PID clinics in the USM. The estimated time of each interview was 30 min. The semi-structured interview was performed via a telephone call because of COVID-19 pandemic restrictions. The audio recording of each interview was transcribed and translated from Malay to English. Subsequently, a thematic analysis utilizing the ATLAS.ti software was performed. Results: The thematic analysis revealed five main themes, which are living with fear and anxiety with four sub-themes (sickness, psychological issues, fear of infections and hereditary issues), PID healthcare support struggles with four sub-themes (PID health system, treatment, diagnosis and financial issues), knowledge with two sub-themes (educational issues and disease understanding), social constraint with two sub-themes (relationships and social isolations) and coping with three sub-themes (acceptance, child health improvement and emotional hygiene). Conclusion: Living with fear and anxiety is a major theme impacting the living experiences of Malaysian patients with PIDs. Improvements in healthcare delivery and disease education are needed to ensure optimal quality of life.