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

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

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...

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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
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spelling	my.upm.eprints.1017992024-04-22T02:50:31Z http://psasir.upm.edu.my/id/eprint/101799/ Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study Ahmed Meelad, Ruwaydah Abd Hamid, Intan Juliana Hashim, Ilie Fadzilah Zainudeen, Zarina Thasneem Abu Bakar, Firdaus Farhani Ismail, Intan Hakimah 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. Frontiers Research Foundation 2022 Article PeerReviewed Ahmed Meelad, Ruwaydah and Abd Hamid, Intan Juliana and Hashim, Ilie Fadzilah and Zainudeen, Zarina Thasneem and Abu Bakar, Firdaus Farhani and Ismail, Intan Hakimah (2022) Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study. Frontiers Media S. A., 10. art. no. 846393. pp. 1-8. ISSN 2296-2360 https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full 10.3389/fped.2022.846393
institution	Universiti Putra Malaysia
building	UPM Library
collection	Institutional Repository
continent	Asia
country	Malaysia
content_provider	Universiti Putra Malaysia
content_source	UPM Institutional Repository
url_provider	http://psasir.upm.edu.my/
description	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.
format	Article
author	Ahmed Meelad, Ruwaydah Abd Hamid, Intan Juliana Hashim, Ilie Fadzilah Zainudeen, Zarina Thasneem Abu Bakar, Firdaus Farhani Ismail, Intan Hakimah
spellingShingle	Ahmed Meelad, Ruwaydah Abd Hamid, Intan Juliana Hashim, Ilie Fadzilah Zainudeen, Zarina Thasneem Abu Bakar, Firdaus Farhani Ismail, Intan Hakimah Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
author_facet	Ahmed Meelad, Ruwaydah Abd Hamid, Intan Juliana Hashim, Ilie Fadzilah Zainudeen, Zarina Thasneem Abu Bakar, Firdaus Farhani Ismail, Intan Hakimah
author_sort	Ahmed Meelad, Ruwaydah
title	Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
title_short	Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
title_full	Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
title_fullStr	Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
title_full_unstemmed	Impact of primary immunodeficiency diseases on the life experiences of patients in Malaysia from the caregivers' perspective: a qualitative study
title_sort	impact of primary immunodeficiency diseases on the life experiences of patients in malaysia from the caregivers' perspective: a qualitative study
publisher	Frontiers Research Foundation
publishDate	2022
url	http://psasir.upm.edu.my/id/eprint/101799/ https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full
_version_	1797911345252794368
score	13.211869

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

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