Gastrostomy matters—The impact of pediatric surgery on caregiver quality of life

Pemberton, Julia; Frankfurter, Claudia; Bailey, Karen; Jones, Lida; Walton, J. Mark

doi:10.1016/j.jpedsurg.2013.02.012

Cited by 39 publications

(28 citation statements)

References 28 publications

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“…Gastrointestinal problems are prevalent in RTT, placing significant burden on both children with RTT and their caregivers 27 . Existing recommendations have suggested that gastrostomy may provide an improved quality of life for caretakers in RTT 28 as supported by the prior reports to this effect 29, 30 . The relationship between increasing BMI and poorer MCS may suggest that the QOL issues related to feeding are not driven simply by nutritional status.…”

Section: Discussionmentioning

confidence: 78%

Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors

Killian

Lane

Lee

et al. 2016

Pediatric Neurology

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Objective Rett syndrome (RTT) is a severe neurodevelopmental disorder affecting approximately one in 10,000 female births. The clinical features of RTT are known to impact both patients’ and caretakers’ quality of life (QOL) in RTT. We hypothesized that more severe clinical features would negatively impact caretaker physical QOL but would positively impact caretaker mental QOL. Methods Participants were individuals enrolled in the Rett Natural History Study with a diagnosis of classic RTT. Demographic data, clinical disease features, caretaker QOL, and measures of family function were assessed during clinic visits. The Optum™ SF-36v2® Health Survey was used to assess caretaker physical and mental QOL (higher scores indicate better QOL). Descriptive, univariate, and multivariate analyses were utilized to characterize relationships between child and caretaker characteristics and caretaker QOL. Results Caretaker physical component scores (PCS) were higher than mental component scores (MCS): 52.8 (9.7) versus 44.5 (12.1). No differences were noted between the baseline and 5-year follow-up. In univariate analyses, disease severity was associated with poorer PCS (p=0.006) and improved MCS (p=0.003). Feeding problems were associated with poorer PCS (p=0.007) and poorer MCS (p=0.018). In multivariate analyses, limitations in caretaker personal time and home conflict adversely affected PCS. Feeding problems adversely impacted MCS. Conclusions Caretaker QOL in RTT is similar to that for caretakers in other chronic diseases. Disease characteristics significantly impact QOL, and feeding difficulties may represent an important clinical target for improving both child and caretaker QOL. The stability of QOL scores between baseline and 5-years adds important value.

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Section: Discussionmentioning

confidence: 78%

Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors

Killian

Lane

Lee

et al. 2016

Pediatric Neurology

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“…Gastrostomy tube placement significantly improves the child's physical health, and concomitantly improves the mental health of the child's caregivers, especially at (or after) one year [8]. Pediatric patients who are the candidates for gastrostomy generally must have normal or near-normal gastric motility, including gastric emptying time as well as small bowel motility [9].…”

Section: Health Resource Usementioning

confidence: 99%

Gastrostomy Tube Placement Outcomes in Children: Comparison of Open and Laparoscopic Methods

AlJubab¹,

Jafarli²,

Altokhais³

et al. 2017

J Univer Surg

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“…Predictors of stress include a child's young age, longer hours of daily oxygen therapy and poorer overall health status of the caregiver(s) (Wang et al ., ). Studies examining the experience of parents of children having procedures such as inguinal hernia repair (Wang et al ., ), gastrostomy for feeding difficulties (Pemberton et al ., ) and congenital heart surgery (Simeone et al ., ; Wei et al ., ; Woolf‐King et al ., ) show that parents report emotional problems, including anxiety and depression. They have an increased need for information support about the child's procedure and care.…”

Section: Introductionmentioning

confidence: 99%

Stress and uncertainty in parents of children with tracheobronchial malacia and stenosis

Soong

Wang

2019

Nursing in Critical Care

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Background: An increasing number of children are undergoing flexible bronchoscopy because of tracheobronchial malacia and stenosis, but there is little research related to their parents' stress and uncertainty. Aim: To explore and identify risk factors associated with stress and uncertainty among Taiwanese parents of children with tracheobronchial malacia and tracheabronchostenosis in a paediatric intensive care unit. Methods: A cross-sectional study design was implemented using two psychometric scales: Parenting Stress Index and Parents' Perception of Uncertainty Scale. Parents of Taiwanese children (0-18 years/o) with a diagnosis of tracheobronchial malacia or/and tracheabronchostenosis who underwent bronchoscopy in a paediatric intensive care unit were recruited. The analysis used descriptive statistics and multivariable linear regression. Results: Ninety parents who were caring for a total of 51 children were recruited. Stress and uncertainty both scored high and were positively correlated with each other. Four risk factors arising from parental stress were unemployment, parental uncertainty, the child's tracheobronchial malacia and tracheabronchostenosis and use of oxygen. Conclusions: Identifying likely causes of stress and uncertainty is essential for this parental group, particularly for parents facing unemployment, feelings of uncertainty and caring for children with both tracheobronchial malacia and tracheabronchostenosis and requiring oxygen. Relevance to clinical practice: Nursing practice can focus on better parental support for those parents who are unemployed, show feeling of uncertainty and care for children with combined tracheobronchial malacia and tracheabronchostenosis and other medical care, such as breathing symptom management, nasogastric feeding and oxygen therapy.

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Gastrostomy matters—The impact of pediatric surgery on caregiver quality of life

Cited by 39 publications

References 28 publications

Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors

Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors

Gastrostomy Tube Placement Outcomes in Children: Comparison of Open and Laparoscopic Methods

Stress and uncertainty in parents of children with tracheobronchial malacia and stenosis

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