2022
DOI: 10.3389/fped.2022.846393
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Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers’ Perspective: A Qualitative Study

Abstract: 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 child… Show more

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Cited by 5 publications
(4 citation statements)
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“…Research on parents of patients with PID remains limited, despite numerous studies conducted on pediatric and adult PID patients themselves 20–22 . In our study, PID parents showed higher depression, state anxiety, and trait anxiety scores, along with increased fatigue.…”
Section: Discussionmentioning
confidence: 51%
See 1 more Smart Citation
“…Research on parents of patients with PID remains limited, despite numerous studies conducted on pediatric and adult PID patients themselves 20–22 . In our study, PID parents showed higher depression, state anxiety, and trait anxiety scores, along with increased fatigue.…”
Section: Discussionmentioning
confidence: 51%
“…19 Research on parents of patients with PID remains limited, despite numerous studies conducted on pediatric and adult PID patients themselves. [20][21][22] In our study, PID parents showed higher depression, state anxiety, and trait anxiety scores, along with increased fatigue. Untreated depression and anxiety can impair economic productivity, work and social functioning, relationships, physical health, and caregivers' problem-solving abilities, ultimately impacting their HRQOL negatively.…”
Section: Ta B L Ementioning
confidence: 56%
“…PIDs are characterized by high susceptibility to autoimmunity, immune dysregulation, opportunistic infections, and malignancies. [ 33 ] The first HSCT reported for PID was performed in 1968. [ 34 , 35 ] Before 2013, HSCT was mainly used to treat malignant diseases and thalassemia in children, most of which were reported as cases.…”
Section: Discussionmentioning
confidence: 99%
“…In general, only a few studies have explored psychological comorbidities in caregivers of children with IEIs (Table 1 ) [ 9 , 11 , 13 , 18 22 ]. Most of these studies, however, have reported higher incidence of psychological comorbidities in both patients and their caregivers in IEIs as a whole (Table 1 ).…”
Section: Introductionmentioning
confidence: 99%