Parental Quality of Life: Caring for an Infant or Toddler with a Tracheostomy at Home

Joseph, Rachel; Goodfellow, Linda M.; Simko, Lynn M

doi:10.1891/0730-0832.33.2.86

Cited by 27 publications

(38 citation statements)

References 25 publications

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“…8e10 A recent study showed that parents who cared for children with tracheostomy at home had moderate distress and a poor quality of life. 25 Therefore, quality home care training is important. Several studies have reported that a multidisciplinary team can provide better coordination and transition, and a multidisciplinary tracheostomy team should be involved early, to improve tracheostomy care and education.…”

Section: Discussionmentioning

confidence: 99%

A 12-year-experience with tracheostomy for neonates and infants in northern Taiwan: Indications, hospital courses, and long-term outcomes

Chen

Chang²,

Hsu

et al. 2018

Pediatrics & Neonatology

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Section: Discussionmentioning

confidence: 99%

A 12-year-experience with tracheostomy for neonates and infants in northern Taiwan: Indications, hospital courses, and long-term outcomes

Chen

Chang²,

Hsu

et al. 2018

Pediatrics & Neonatology

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“…Physicians noted the immense amount of care a child with a tracheostomy will need throughout his or her lifetime, which is supported by a large body of literature on the need for chronic complex care coordination in this population (20–22). In addition, families of children with tracheostomies experience significant degrees of social isolation, disruption of the rhythms of daily life, and less satisfaction with interpersonal relationships (23–28). While not all of these outcomes are inevitable, they are important factors to be considered by families as they make their decision.…”

Section: Discussionmentioning

confidence: 99%

Discussing Benefits and Risks of Tracheostomy: What Physicians Actually Say*

Hebert

Watson

Madrigal

et al. 2017

Pediatric Critical Care Medicine

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Objectives When contemplating tracheostomy placement in a pediatric patient, a family-physician conference is often the setting for the disclosure of risks and benefits of the procedure. Our objective was to compare benefits and risks of tracheostomy presented during family-physician conferences to an expert panel’s recommendations for what should be presented. Design We conducted a retrospective review of 19 transcripts of audio-recorded family-physician conferences regarding tracheostomy placement in children. A multi-center, multi-disciplinary expert panel of clinicians was surveyed to generate a list of recommended benefits and risks for comparison. Primary analysis of statements by clinicians was qualitative. Setting Single-center Pediatric Intensive Care Unit (PICU) of a tertiary medical center. Subjects Family members who participated in family-physician conferences regarding tracheostomy placement for a critically ill child from April 2012 to August 2014. Measurements and Main Results We identified 300 physician statements describing benefits and risks of tracheostomy. Physicians were more likely to discuss benefits than risks (72% vs 28%). Three broad categories of benefits were identified: 1) tracheostomy would limit the impact of being in the PICU (46%), 2) perceived obstacles of tracheostomy can be overcome (34%), and 3) tracheostomy optimizes respiratory health (20%). Risks fell into two categories: tracheostomy involves a big commitment (71%) and it has complications (29%). The expert panel’s recommendations were similar to risks and benefits discussed during family conferences; however, they suggested physicians present an equal balance of discussion of risks and benefits. Conclusion When discussing tracheostomy placement, physicians emphasized benefits that are shared by physicians and families while minimizing the risks. The expert panel recommended a balanced approach by equally weighing risks and benefits. To facilitate educated decision making, physicians should present a more extensive range of risks and benefits to families making this critical decision.

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“…There are not many studies about the families of children with tracheostomy in the literature. Some surveys to date have shown that the quality of life of parents with children with tracheostomy has decreased, which has a negative impact on the mental health of parents (28). The same surveys highlighted that the stress and fear experienced by parents can be best reduced by communication with experienced families with children with tracheostomy.…”

Section: Discussionmentioning

confidence: 99%

Retrospective Analysis and Family Feedback of Patients Who Underwent Tracheostomy in Pediatric Intensive Care Unit: Single Center, 10 Years of Experience

Barlas¹,

Kıhtır²,

Yeşilbaş³

et al. 2020

Bezmialem Science

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The aim of this study was to investigate the patients who had undergone tracheostomy during hospitalization in our pediatric intensive care unit (PICU), to learn the satisfaction of the families, and to evaluate the effect of tracheostomy on the number of hospitalizations. Methods: The medical records of 80 patients who underwent tracheostomy in the PICU between 2006-2016 were retrospectively analyzed. Results: Fourty-one of our patients were male (51.25%) and 39 were female (48.75%). The mean age of males was 46.98 months (1-209 months) and girls was 43.44 months (1-205 months). Neurological system diseases (42.5%) were on the first place according to the current chronic diseases. Seventy-five patients (93.75%) were followed up with invasive mechanical ventilation and the mean duration of mechanical ventilation was 22.47±13.91 days. Only one patient (1.25%) had complication in early period. Forty one patients were contacted via telephone. Twenty-three families (56%) were satisfied with tracheostomy and 10 (24.5%) were not. The mean age of the dissatisfied group was statistically lower than the satisfied group (p=0.018). Of the 41 patients, 18 (44%) reported ÖZ Amaç: Bu çalışmada çocuk yoğun bakım birimimizde (ÇYBB) yatarken trakeostomi açılan hastaların incelenmesi, aile memnuniyetlerinin öğrenilmesi ve trakeostominin hastane yatış sayısına etkisinin değerlendirilmesi amaçlanmıştır. Yöntemler: ÇYBB'de 2006-2016 yılları arasında yatarken trakeostomi açılan 80 hastanın tıbbi kayıtları geriye dönük olarak incelendi. Ailelere ulaşılarak trakeostomiden memnun kalıp kalmadıkları, trakeostomi açılmadan önce ve sonra hastane yatış sayısı arasında fark olup olmadığı ile ilgili bilgi alındı. Bulgular: Hastalarımızın 41 tanesi erkek (%51,25), 39 tanesi kızdı (%48,75). Erkeklerin yaş ortalaması 46,98 ay (1-209 ay), kızların yaş ortalaması 43,44 aydı (1-205 ay). Mevcut kronik hastalıklara göre ilk sırayı nörolojik sistem hastalıkları (%42,5) almaktaydı. Yetmiş beş hasta (%93,75) invaziv mekanik ventilasyonda takip edilmişti ve mekanik ventilasyonda kalış süreleri ortalama 22,47±13,91 gündü. Erken dönemde sadece bir hastada (%1,25) komplikasyon gelişmişti. Toplam 80 hastanın 9'u (%11,25) kaybedilirken 71'i (%88,75) eve taburcu edilmişti. Kırk bir hastanın ailesine telefon ile ulaşıldı. Yirmi üç aile (%56) trakeostomiden memnun olduğunu, 10 aile (%24,5) ise memnun olmadığını belirtti. Memnun olmayan grubun yaş ortalaması memnun gruptan istatistiksel olarak a nlamlı

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Parental Quality of Life: Caring for an Infant or Toddler with a Tracheostomy at Home

Cited by 27 publications

References 25 publications

A 12-year-experience with tracheostomy for neonates and infants in northern Taiwan: Indications, hospital courses, and long-term outcomes

A 12-year-experience with tracheostomy for neonates and infants in northern Taiwan: Indications, hospital courses, and long-term outcomes

Discussing Benefits and Risks of Tracheostomy: What Physicians Actually Say*

Retrospective Analysis and Family Feedback of Patients Who Underwent Tracheostomy in Pediatric Intensive Care Unit: Single Center, 10 Years of Experience

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