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

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

Ruwaydah Ahmed Meelad  1 , Intan Juliana Abd Hamid  1 , Ilie Fadzilah Hashim  1 , Zarina Thasneem Zainudeen  1 , Firdaus Farhani Abu Bakar  1 , Fahisham Taib  2 , Norsarwany Mohamad  2 , Ernest Mangantig  1 , Intan Hakimah Ismail  3 , Amir Hamzah Abdul Latiff  4 , Lokman Mohd Noh  5
Affiliations

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

Ruwaydah Ahmed Meelad et al. Front Pediatr. .

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.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

FIGURE 1
FIGURE 1
Wordcloud summarising all the themes and sub-themes identified through the thematic analysis of the interview transcripts.
See this image and copyright information in PMC

References

    1. Abd Hamid IJ, Azman NA, Gennery AR, Mangantig E, Hashim IF, Zainudeen ZT. Systematic review of primary immunodeficiency diseases in Malaysia: 1979–2020. Front Immunol. (2020) 11:1923. 10.3389/fimmu.2020.01923 - DOI - PMC - PubMed
    1. Abolhassani H, Azizi G, Sharifi L, Yazdani R, Mohsenzadegan M, Delavari S, et al. Global systematic review of primary immunodeficiency registries. Exp Rev Clin Immunol. (2020) 16:717–32. 10.1080/1744666X.2020.1801422 - DOI - PubMed
    1. Ahmadi M, Gheibizadeh M, Rassouli M, Ebadi A, Asadizaker M, Jahanifar M. Experience of uncertainty in patients with thalassemia major: a qualitative study. Int J Hematol Oncol Stem Cell Res. (2020) 14:237. 10.18502/ijhoscr.v14i4.4479 - DOI - PMC - PubMed
    1. Brede KK, Wandel M, Wiig I, von der Lippe C. Primary immunodeficiency diseases and gastrointestinal distress: coping strategies and dietary experiences to relieve symptoms. Qual Health Res. (2021) 31:361–72. 10.1177/1049732320967908 - DOI - PMC - PubMed
    1. McdDowell E, Titman P, Davidson S. Parents’ experiences one year on from their child’s hematopoietic stem cell transplant for primary immunodeficiency. J Health Psychol. (2010) 15:897–904. 10.1177/1359105309359331 - DOI - PubMed