Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative Study
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 patie...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-03-01
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| Series: | Frontiers in Pediatrics |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full |
| _version_ | 1819156506645364736 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Ruwaydah Ahmed Meelad |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-22T15:53:57Z |
| format | Article |
| id | doaj.art-3cced593558d4a1f9c69aea05e664222 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-12-22T15:53:57Z |
| publishDate | 2022-03-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-3cced593558d4a1f9c69aea05e6642222022-12-21T18:20:49ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602022-03-011010.3389/fped.2022.846393846393Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative StudyRuwaydah Ahmed Meelad0Intan Juliana Abd Hamid1Ilie Fadzilah Hashim2Zarina Thasneem Zainudeen3Firdaus Farhani Abu Bakar4Fahisham Taib5Norsarwany Mohamad6Ernest Mangantig7Intan Hakimah Ismail8Amir Hamzah Abdul Latiff9Lokman Mohd Noh10Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaPrimary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaPrimary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaPrimary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaPrimary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaDepartment of Paediatrics, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, MalaysiaDepartment of Paediatrics, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, MalaysiaPrimary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, MalaysiaDepartment of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, MalaysiaPantai Hospital, Kuala Lumpur, MalaysiaHospital Tunku Azizah, Kuala Lumpur, MalaysiaIntroductionPrimary 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.https://www.frontiersin.org/articles/10.3389/fped.2022.846393/fullMalaysiaprimary immunodeficiencyinborn errors of immunitythematic analysisliving experiencequality of life |
| spellingShingle | 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 Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative Study Frontiers in Pediatrics Malaysia primary immunodeficiency inborn errors of immunity thematic analysis living experience quality of life |
| title | 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_short | 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 |
| topic | Malaysia primary immunodeficiency inborn errors of immunity thematic analysis living experience quality of life |
| url | https://www.frontiersin.org/articles/10.3389/fped.2022.846393/full |
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