Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis

IntroductionThe incidence of pediatric tracheostomy is on the rise. More children are undergoing tracheostomy at a younger age and living longer and cared for at home. Caring for children with tracheostomy affects the caregivers’ Quality of Life (QOL) and caregiver burden. We undertook a systematic...

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Main Authors: Win Thu Aung, Natasha Yixuan Ong, Shina Qing Chun Yeo, Nur Syahindah Binti Juhari, Gwyneth Kong, Nicole-Ann Lim, Zubair Amin, Yvonne Peng Mei Ng
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-01-01
Series:Frontiers in Public Health
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Online Access:https://www.frontiersin.org/articles/10.3389/fpubh.2024.1485544/full
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author Win Thu Aung
Natasha Yixuan Ong
Shina Qing Chun Yeo
Nur Syahindah Binti Juhari
Gwyneth Kong
Nicole-Ann Lim
Zubair Amin
Zubair Amin
Yvonne Peng Mei Ng
Yvonne Peng Mei Ng
author_facet Win Thu Aung
Natasha Yixuan Ong
Shina Qing Chun Yeo
Nur Syahindah Binti Juhari
Gwyneth Kong
Nicole-Ann Lim
Zubair Amin
Zubair Amin
Yvonne Peng Mei Ng
Yvonne Peng Mei Ng
author_sort Win Thu Aung
collection DOAJ
description IntroductionThe incidence of pediatric tracheostomy is on the rise. More children are undergoing tracheostomy at a younger age and living longer and cared for at home. Caring for children with tracheostomy affects the caregivers’ Quality of Life (QOL) and caregiver burden. We undertook a systematic review and meta-analysis to determine the impact of pediatric tracheostomy on caregivers’ QOL and caregiver burden.MethodsWe performed a search for quantitative studies measuring QOL, caregiver burden and related factors such as psychological distress, coping, stress, and financial strain using validated instruments, reported by caregivers of children with tracheostomy. We searched PubMed, Embase, Cochrane Central Register of Clinical Trials, CINAHL, and PsycINFO with the following search terms: “pediatrics,” “tracheostomy,” “quality of life,” “caregivers,” “care burden” from the inception of respective databases to 23rd May 2024. Meta-analysis was conducted using R (version 4.3.1).ResultsTwenty-three studies (1,299 caregivers) were included in systematic review. Seven studies (469 caregivers) using Pediatric Quality of Life Family Integrated Module underwent meta-analysis. The pooled mean total family impact score, parental health-related QOL, family functioning score were 70.29 [95% CI, 61.20–79.37], 69.27 [95% CI, 60.88–77.67], and 72.96 [95% CI, 65.92–80.00] respectively. Other key instruments were the Pediatric Tracheostomy Health Status Instrument and Zarit Burden Interview. Qualitative synthesis identified several risk factors for lower QOL and higher caregiver burden: comorbidities in children, younger age at tracheostomy, need for additional medical equipment, presence of older siblings, higher financial strain, being the sole caregiver or being unmarried, and maternal depression. Caregivers’ QOL correlated positively with coping and negatively with stress which is, in turn, associated with medical complications in the first year and the duration of tracheostomy. About 40% of mothers experienced moderate to severe caregiver burden while caring for their children with tracheostomy and this was significantly correlated with depression. Encouragingly, parents also reported positive experience including closeness of the family, feeling stronger, and having a strong sense of mastery.DiscussionCaregivers of children with tracheostomy experience low QOL and high caregiver burden, which were exacerbated by various medical and psychosocial factors. QOL should be assessed during clinical encounters to identify caregivers who require additional support which includes learning coping and stress reduction strategies.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=334457, identifier CRD42022334457.
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spelling doaj-art-1c171560a3b6452fac622a8e04c03ed12025-01-16T08:10:05ZengFrontiers Media S.A.Frontiers in Public Health2296-25652025-01-011210.3389/fpubh.2024.14855441485544Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysisWin Thu Aung0Natasha Yixuan Ong1Shina Qing Chun Yeo2Nur Syahindah Binti Juhari3Gwyneth Kong4Nicole-Ann Lim5Zubair Amin6Zubair Amin7Yvonne Peng Mei Ng8Yvonne Peng Mei Ng9Ministry of Health Holding (MOHH), Singapore, SingaporeYong Loo Lin School of Medicine, National University of Singapore, Singapore, SingaporeMinistry of Health Holding (MOHH), Singapore, SingaporeYong Loo Lin School of Medicine, National University of Singapore, Singapore, SingaporeMinistry of Health Holding (MOHH), Singapore, SingaporeMinistry of Health Holding (MOHH), Singapore, SingaporeDepartment of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, SingaporeDepartment of Neonatology, Khoo Teck Puat-National University Children’s Medical Institute, National University Hospital, Singapore, SingaporeDepartment of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, SingaporeDepartment of Neonatology, Khoo Teck Puat-National University Children’s Medical Institute, National University Hospital, Singapore, SingaporeIntroductionThe incidence of pediatric tracheostomy is on the rise. More children are undergoing tracheostomy at a younger age and living longer and cared for at home. Caring for children with tracheostomy affects the caregivers’ Quality of Life (QOL) and caregiver burden. We undertook a systematic review and meta-analysis to determine the impact of pediatric tracheostomy on caregivers’ QOL and caregiver burden.MethodsWe performed a search for quantitative studies measuring QOL, caregiver burden and related factors such as psychological distress, coping, stress, and financial strain using validated instruments, reported by caregivers of children with tracheostomy. We searched PubMed, Embase, Cochrane Central Register of Clinical Trials, CINAHL, and PsycINFO with the following search terms: “pediatrics,” “tracheostomy,” “quality of life,” “caregivers,” “care burden” from the inception of respective databases to 23rd May 2024. Meta-analysis was conducted using R (version 4.3.1).ResultsTwenty-three studies (1,299 caregivers) were included in systematic review. Seven studies (469 caregivers) using Pediatric Quality of Life Family Integrated Module underwent meta-analysis. The pooled mean total family impact score, parental health-related QOL, family functioning score were 70.29 [95% CI, 61.20–79.37], 69.27 [95% CI, 60.88–77.67], and 72.96 [95% CI, 65.92–80.00] respectively. Other key instruments were the Pediatric Tracheostomy Health Status Instrument and Zarit Burden Interview. Qualitative synthesis identified several risk factors for lower QOL and higher caregiver burden: comorbidities in children, younger age at tracheostomy, need for additional medical equipment, presence of older siblings, higher financial strain, being the sole caregiver or being unmarried, and maternal depression. Caregivers’ QOL correlated positively with coping and negatively with stress which is, in turn, associated with medical complications in the first year and the duration of tracheostomy. About 40% of mothers experienced moderate to severe caregiver burden while caring for their children with tracheostomy and this was significantly correlated with depression. Encouragingly, parents also reported positive experience including closeness of the family, feeling stronger, and having a strong sense of mastery.DiscussionCaregivers of children with tracheostomy experience low QOL and high caregiver burden, which were exacerbated by various medical and psychosocial factors. QOL should be assessed during clinical encounters to identify caregivers who require additional support which includes learning coping and stress reduction strategies.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=334457, identifier CRD42022334457.https://www.frontiersin.org/articles/10.3389/fpubh.2024.1485544/fullpsychological distressfinancial burdenstresscopingparents
spellingShingle Win Thu Aung
Natasha Yixuan Ong
Shina Qing Chun Yeo
Nur Syahindah Binti Juhari
Gwyneth Kong
Nicole-Ann Lim
Zubair Amin
Zubair Amin
Yvonne Peng Mei Ng
Yvonne Peng Mei Ng
Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
Frontiers in Public Health
psychological distress
financial burden
stress
coping
parents
title Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
title_full Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
title_fullStr Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
title_full_unstemmed Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
title_short Impact of pediatric tracheostomy on family caregivers’ burden and quality of life: a systematic review and meta-analysis
title_sort impact of pediatric tracheostomy on family caregivers burden and quality of life a systematic review and meta analysis
topic psychological distress
financial burden
stress
coping
parents
url https://www.frontiersin.org/articles/10.3389/fpubh.2024.1485544/full
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