The natural history and predictors of persistent problem behaviours in cystic fibrosis: a multicentre, prospective study

Sheehan, Jane; Massie, John; Hay, Margaret; Jaffé, Adam; Glazner, Judith; Armstrong, David

doi:10.1136/archdischild-2011-301527

Cited by 21 publications

(17 citation statements)

References 28 publications

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“…24–28 Feeding difficulties are among the most common problems for which parents of children with CF seek professional assistance. 29 Feeding problems have been linked to attachment disturbances among young children with CF. 17 Additionally, mothers of infants with CF are more likely to bottle feed their infants than mothers of infants with no health problems.…”

Section: Mealtime As Context For Relationshipsmentioning

confidence: 99%

Factors Affecting Parent-Child Relationships One Year After Positive Newborn Screening for Cystic Fibrosis or Congenital Hypothyroidism

Tluczek

Clark

McKechnie

et al. 2015

Journal of Developmental &Amp; Behavioral Pediatrics

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Objective Examine factors that mediate parent-infant relationships 12 months after positive newborn screening (NBS). Method We examined effects of infant diagnosis, parents’ perceptions of child vulnerability and child attachment, parental depression and anxiety on parent-infant feeding interactions for 131 mothers and 118 fathers of 131 infants whose NBS and diagnostics confirmed cystic fibrosis (CF, n=23), congenital hypothyroidism (CH, n=35), CF carrier status (CF-C, n=38), or healthy, normal NBS (H, n=35). Results Separate composite indicator structural equation models for mothers and fathers showed neonatal diagnosis was not associated with increased anxiety or depression. In comparison to the H group, CF group parents reported higher perceptions of child vulnerability (p< 0.001, p=0.002); and CF-C group fathers viewed their children as more attached (p=0.021). High maternal perception of child vulnerability was associated with low perceptions of child attachment (p=0.001) which was associated with task-oriented feeding behavior (p=0.016, p=0.029). Parental task-oriented feeding behavior was associated with less positive (p< 0.001, p< 0.001) and more negative interactions (p< 0.001, p= 0.001) with their infants. High paternal perception of child vulnerability was associated with negative parent interactions (p< 0.001). High parental affective involvement and verbalization was associated with high infant affective expressiveness, communicative skills, and social responsiveness (mothers’ p< 0.001, fathers’ p< 0.001). High parental negative affect and/or inconsistent and intrusive behavior was associated with infant dysregulation and irritability (mothers’ p< 0.001, fathers’ p< 0.001). Conclusion The severity of conditions identified through NBS can affect parents’ perceptions of their child’s vulnerability and attachment. Infant feeding problems in the context of chronic health conditions, like CF, could represent signs of more deeply rooted concerns regarding the parent-child relationship that merit additional clinical evaluation.

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Section: Mealtime As Context For Relationshipsmentioning

confidence: 99%

Factors Affecting Parent-Child Relationships One Year After Positive Newborn Screening for Cystic Fibrosis or Congenital Hypothyroidism

Tluczek

Clark

McKechnie

et al. 2015

Journal of Developmental &Amp; Behavioral Pediatrics

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“…Families and CF health care professionals should be aware of the substantial impact of behavior on optimal nutrition. [124][125][126][127] Children who continue to be at nutritional risk despite having addressed pulmonary, social, and dietary factors should be referred to pediatric gastroenterologists, endocrinologists, and behavioral specialists for further evaluation and management. Gastrostomy tube feedings have been shown in older children and adults with CF to improve weight and pulmonary function.…”

Section: Nutritional Riskmentioning

confidence: 99%

Clinical Practice Guidelines From the Cystic Fibrosis Foundation for Preschoolers With Cystic Fibrosis

et al. 2016

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Cystic fibrosis (CF) clinical care guidelines exist for the care of infants up to age 2 years and for individuals ≥6 years of age. An important gap exists for preschool children between the ages of 2 and 5 years. This period marks a time of growth and development that is critical to achieve optimal nutritional status and maintain lung health. Given that disease often progresses in a clinically silent manner, objective and sensitive tools that detect and track early disease are important in this age group. Several challenges exist that may impede the delivery of care for these children, including adherence to therapies. A multidisciplinary committee was convened by the CF Foundation to develop comprehensive evidence-based and consensus recommendations for the care of preschool children, ages 2 to 5 years, with CF. This document includes recommendations in the following areas: routine surveillance for pulmonary disease, therapeutics, and nutritional and gastrointestinal care.

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“…Scores for the depression, anxiety and stress scales are calculated by summing the scores for the relevant items and multiplying the obtained scaled score by two to compare to DASS normative data. The DASS21 has previously been implemented with caregivers of children with CF (Ward et al 2009, Sheehan et al 2012. The scales of the DASS have high internal consistency and yield meaningful discriminations in a variety of settings and measure current state or change in state over time (for example, in the course of treatment) on the three dimensions of depression, anxiety and stress.…”

Section: Family Support Scalementioning

confidence: 99%

Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis

Douglas

Jordan

Priddis

et al. 2015

Journal of Advanced Nursing

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The natural history and predictors of persistent problem behaviours in cystic fibrosis: a multicentre, prospective study

Abstract: Child problem behaviours are common in children with CF, persist and are often predicted by the mental health of the parent. Routine surveillance for and management of child problem behaviours are recommended.

Cited by 21 publications

References 28 publications

Factors Affecting Parent-Child Relationships One Year After Positive Newborn Screening for Cystic Fibrosis or Congenital Hypothyroidism

Factors Affecting Parent-Child Relationships One Year After Positive Newborn Screening for Cystic Fibrosis or Congenital Hypothyroidism

Clinical Practice Guidelines From the Cystic Fibrosis Foundation for Preschoolers With Cystic Fibrosis

Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis

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