scholarly journals Parenting a Child with Phenylketonuria: An Investigation into the Factors That Contribute to Parental Distress

2018 ◽  
pp. 91-100 ◽  
Author(s):  
Olivia Ambler ◽  
Emma Medford ◽  
Dougal J. Hare
Keyword(s):  
2010 ◽  
Author(s):  
Erlanger A. Turner ◽  
Ashley Gibb ◽  
Susan Perkins-Parks ◽  
Reagan Rinderknecht

2021 ◽  
Vol 10 (8) ◽  
pp. 1726
Author(s):  
Leonardo Zoccante ◽  
Michele Marconi ◽  
Marco Luigi Ciceri ◽  
Silvia Gagliardoni ◽  
Luigi Alberto Gozzi ◽  
...  

Equine-assisted activities and therapies (EAAT) have been suggested to improve adaptive behavior, and possibly motor function, in autism spectrum disorder (ASD). This study investigated the effects of EAAT on adaptive behavior and motor function in 15 children with ASD (13 males) aged 7–15 years as well as the impact of EAAT on the magnitude of stress in the parent–child system and the evolution in the child interaction with both the trained therapist and the therapeutic animal through the 20 weekly sessions of EAAT. EAAT were associated with greater adaptive behavior and coordination (all p ≤ 0.01) as well as a progressive improvement in the child’s abilities to respond to the increasing complexity of such form of positive behavioral support (all p < 0.001). However, EAAT did not prove to be effective in reducing parental distress. Collectively, preliminary evidence presented here may have important public health implications and gives reason to hope that EAAT could possibly be an effective option in ASD, warranting further investigation of its potential benefits in clinical trials among larger samples.


2021 ◽  
pp. 1357633X2098121
Author(s):  
Sarah Bompard ◽  
Tommaso Liuzzi ◽  
Susanna Staccioli ◽  
Fiammetta D’Arienzo ◽  
Sahereh Khosravi ◽  
...  

Introduction During the COVID-19 pandemic, children with neurodevelopmental disabilities could not attend their usual rehabilitation therapies, with a consequent reduced support of developmental process and risk of worsening of their clinical conditions. Methods We prospectively enrolled 14 children with developmental delay, who had already tried a personalised music therapy (Euterpe method). We included them in a 12-day programme of home-based music therapy. The children and their parents were investigated using the Sleep Disturbance Scale for Children and the Parent Stress Index-Short Form. Results Fourteen children started the intervention, while only 12 children completed all the planned home sessions and assessments. We observed a significant improvement in children’s sleep quality and a reduction of parental distress. Discussion The significant improvements in parental distress and sleep quality must be considered important achievements for the quality of life of a child and their family. Home-based music therapy can provide a feasible approach to improving sleep and parent’s stress for children with developmental disorders.


2021 ◽  
pp. 263207702110323
Author(s):  
Nicole R. Giuliani ◽  
Nichole R. Kelly

Parental distress is associated with less healthful child feeding practices. In this preliminary study, we examined how changes in distress from before to during the COVID-19 pandemic were associated with similar changes in feeding practices in a sample of mothers of preschool-aged children. In addition, we examined how pre-pandemic laboratory measures of maternal self-regulation moderated this association. A total of 36 mothers from an ongoing study on parent and child self-regulation completed surveys assessing parental distress (i.e., maternal depression, parenting stress) and child feeding practices during pandemic-related stay-at-home orders in May–June 2020. These mothers had completed the same measures approximately 2 years earlier, along with laboratory assessments of inhibitory and attentional control. Pre-pandemic laboratory measures of attentional control significantly moderated the association between increased maternal depression and use of controlling feeding practices, such that mothers with better attentional, but not inhibitory, control scores did not show an effect of increased depression on feeding practices. These results provide preliminary evidence that acute increases in parental distress associated with “stay-at-home” orders affect feeding practices, specifically for mothers with lower levels of attentional control abilities.


2011 ◽  
Vol 2011 ◽  
pp. 1-8 ◽  
Author(s):  
Helene Werner ◽  
Oskar G. Jenni

This study describes parental expectations for sleep-wake patterns in healthy kindergarten children and explores their relation to children’s sleep quality and parental distress. Data analysis of 54 mother-child dyads (age range of the children: 4–7 years) indicated that parental expectations for children’s sleep-wake patterns differ between scheduled and free days and depend on children’s chronotype. Mothers of children with late chronotype showed less adequate expectations for children’s sleep onset time than mothers of children with early chronotype (e.g., morning types). Furthermore, children of mothers with less adequate expectations for children’s sleep onset time on scheduled days had longer settling periods during which sleep rituals may take place (r=0.31,P≤0.05), spent more time in bed than they actually sleep (r=0.35,P≤0.01), and had more frequently difficulties falling asleep (r=0.33,P≤0.01). However, less adequate expectations for children’s sleep onset time were not associated with parental distress (P>0.05). We conclude that parental expectations about their children’s sleep play a key role in understanding normal and abnormal sleep during childhood.


2021 ◽  
pp. 385-405
Author(s):  
Jennifer Connolly ◽  
Katherine Benvenuto ◽  
Katherine Wincentak

Adverse experiences in childhood include negative events directed toward the child, including abuse, mistreatment, or neglect, as well as indirect events such as family conflict, parental distress, and community disadvantage. All these events can disrupt normative development and may lead to maladaptive sexual outcomes in emerging adulthood. This chapter explores the links between experiences of childhood adversity and maladaptive sexual outcomes in emerging adulthood, including engagement in high-risk sexual activities and negative sexual health outcomes. Underlying processes that have been theorized to account for these effects are discussed, especially the role of cumulative stress and emotion dysregulation. The implications of the research findings for promoting sexual health are considered, and future research directions are proposed.


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