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...
Saved in:
Main Authors: | , , , , , |
---|---|
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 |
Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
id |
my.upm.eprints.101799 |
---|---|
record_format |
eprints |
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 |
13.19449 |