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

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

doi:10.3389/fped.2022.846393

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

Front Pediatr. 2022 Mar 31:10:846393. doi: 10.3389/fped.2022.846393. eCollection 2022.

Affiliations

¹ Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, Malaysia.
² Department of Paediatrics, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia.
³ Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia.
⁴ Pantai Hospital, Kuala Lumpur, Malaysia.
⁵ Hospital Tunku Azizah, Kuala Lumpur, Malaysia.

Abstract

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.

Keywords: Malaysia; inborn errors of immunity; living experience; primary immunodeficiency; quality of life; thematic analysis.