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

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

JOURNAL=Frontiers in Pediatrics

VOLUME=Volume 10 - 2022

YEAR=2022

URL=https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2022.846393

DOI=10.3389/fped.2022.846393

ISSN=2296-2360

ABSTRACT=Introduction: Primary immunodeficiency diseases (PIDs) are chronic diseases that affect various aspects of a patient’s life. However, the impact of living with PIDs is poorly described. 
Objective: This study aimed to explore living experiences challenges among Malaysian caregivers of patients with PID who underwent follow-up in Universiti Sains Malaysia (USM) or those registered members of the Malaysian Primary Immunodeficiency Diseases Society (MyPOPI). 
Methodology: The study was conducted from 1 March until 30 May 2021. The parents of children with PIDs were invited to participate for a semi-structured in-depth interview at the PID clinics in USM. The estimated time of each interview was 30 minutes. The semi-structured interview was performed via telephone call becasue of COVID-19 pandemic restrictions. The audio recording of each interview was transcribed and translated from Malay to English. Subsequently, thematic analysis utilising ATLAS.ti software was performed. 
Result: 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.