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

Frontiers in Pediatrics

卷:10

Intan Hakimah Ismail¹  Fahisham Taib²  Norsarwany Mohamad²  Lokman Mohd Noh³  Amir Hamzah Abdul Latiff⁴  Zarina Thasneem Zainudeen⁵  Ruwaydah Ahmed Meelad⁵  Intan Juliana Abd Hamid⁵  Firdaus Farhani Abu Bakar⁵  Ilie Fadzilah Hashim⁵  Ernest Mangantig⁵ 

[1] Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia;

[2] Department of Paediatrics, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia;

[3] Hospital Tunku Azizah, Kuala Lumpur, Malaysia;

[4] Pantai Hospital, Kuala Lumpur, Malaysia;

[5] Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, Malaysia;

关键词: Malaysia;    primary immunodeficiency;    inborn errors of immunity;    thematic analysis;    living experience;    quality of life;   

DOI  :  10.3389/fped.2022.846393

来源: DOAJ

【 摘 要 】

IntroductionPrimary 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.ObjectiveThis 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.MethodologyThe 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.ResultsThe 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).ConclusionLiving 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.

【 授权许可】

Unknown