Parenting a child with Down syndrome:A qualitative study on parents' experiences and behaviors from a self-determination theory perspective

Purpose: Raising a child with Down syndrome (DS) brings unique challenges to parents' psychological functioning. Extensive quantitative research has shown that these parents tend to experience higher levels of parental stress and lower well-being. However, a more in-depth and balanced insight is essential to fully grasp the complexity of parenting a child with DS. To address this gap, this study uses a qualitative approach to explore the experiences and behaviors of parents raising a child with DS. Design and methods: By adopting the Self-Determination Theory as a comprehensive theoretical framework, this study attends to both opportunities and challenges for parents' psychological needs of autonomy, relatedness, and competence, and provides insights into how they support the psychological needs of their child with DS. Eleven in-depth interviews were conducted with parents of a child with DS (aged 4 to 23 years). Results: Through thematic analysis, six themes of parental experiences and three themes of parenting behaviors were distinguished. Conclusions: The findings indicated that parents experience many opportunities for need satisfaction, predominantly in their need for relatedness. However, raising a child with DS also involves challenges for the parents' family relationships, personal freedom, professional ambitions, and feelings of competence. Regarding their parenting behaviors, parents considered stimulating independence, tuning into the child's mental world, and being patient as essential practices when raising a child with DS. Practical implications: This study provides important clues to promote parents' well-being as well as their engagement in need-supportive parenting practices towards their child with DS.</p

Parenting a child with Down syndrome:A qualitative study on parents' experiences and behaviors from a self-determination theory perspective

Purpose: Raising a child with Down syndrome (DS) brings unique challenges to parents' psychological functioning. Extensive quantitative research has shown that these parents tend to experience higher levels of parental stress and lower well-being. However, a more in-depth and balanced insight is essential to fully grasp the complexity of parenting a child with DS. To address this gap, this study uses a qualitative approach to explore the experiences and behaviors of parents raising a child with DS. Design and methods: By adopting the Self-Determination Theory as a comprehensive theoretical framework, this study attends to both opportunities and challenges for parents' psychological needs of autonomy, relatedness, and competence, and provides insights into how they support the psychological needs of their child with DS. Eleven in-depth interviews were conducted with parents of a child with DS (aged 4 to 23 years). Results: Through thematic analysis, six themes of parental experiences and three themes of parenting behaviors were distinguished. Conclusions: The findings indicated that parents experience many opportunities for need satisfaction, predominantly in their need for relatedness. However, raising a child with DS also involves challenges for the parents' family relationships, personal freedom, professional ambitions, and feelings of competence. Regarding their parenting behaviors, parents considered stimulating independence, tuning into the child's mental world, and being patient as essential practices when raising a child with DS. Practical implications: This study provides important clues to promote parents' well-being as well as their engagement in need-supportive parenting practices towards their child with DS.</p

Parents’ Stress, Parental Burnout, and Parenting Behavior during the COVID-19 Pandemic:Comparing Parents of Children with and without Complex Care Needs

Parental burnout emerges as a response to chronic and overwhelming parenting stress and is related to dysfunctional parenting practices, such as neglectful or violent behavior. Grounded in Self-Determination Theory, the current study aims to evaluate parenting stress as an antecedent and the more general quality of parenting as an outcome of parental burnout. This objective is tackled within the context of the COVID-19 pandemic, which posed major challenges to parents, especially to those raising children with complex care needs (CCN; i.e., an intellectual and/or physical disability, and/or behavioral and/or emotional problems). Therefore, this study explores mean-level group differences in parenting stress, parental burnout, and parenting behaviors between parents raising children with and without CCN, and tests whether associations between these variables are similar for both groups of parents. A group of 506 parents (88% mothers, M age = 44 years) participated in a widespread online survey during the first lockdown in Belgium. Based on mean-level differences, parents of children with CCN reported substantially higher levels of parenting stress and parental burnout but scored similarly on the assessed parenting behaviors. Multigroup structural equation models showed that in both groups, parenting stress was related positively to parental burnout which, in turn, was related to less autonomy-supportive and responsive parenting and to more psychologically controlling parenting. Although raising a child with CCN may be a risk factor for increased parental stress and burnout, the functional role of these parental experiences in the quality of parenting appears to be similar across both groups of parents.</p

Parents’ Stress, Parental Burnout, and Parenting Behavior during the COVID-19 Pandemic:Comparing Parents of Children with and without Complex Care Needs

Parental burnout emerges as a response to chronic and overwhelming parenting stress and is related to dysfunctional parenting practices, such as neglectful or violent behavior. Grounded in Self-Determination Theory, the current study aims to evaluate parenting stress as an antecedent and the more general quality of parenting as an outcome of parental burnout. This objective is tackled within the context of the COVID-19 pandemic, which posed major challenges to parents, especially to those raising children with complex care needs (CCN; i.e., an intellectual and/or physical disability, and/or behavioral and/or emotional problems). Therefore, this study explores mean-level group differences in parenting stress, parental burnout, and parenting behaviors between parents raising children with and without CCN, and tests whether associations between these variables are similar for both groups of parents. A group of 506 parents (88% mothers, M age = 44 years) participated in a widespread online survey during the first lockdown in Belgium. Based on mean-level differences, parents of children with CCN reported substantially higher levels of parenting stress and parental burnout but scored similarly on the assessed parenting behaviors. Multigroup structural equation models showed that in both groups, parenting stress was related positively to parental burnout which, in turn, was related to less autonomy-supportive and responsive parenting and to more psychologically controlling parenting. Although raising a child with CCN may be a risk factor for increased parental stress and burnout, the functional role of these parental experiences in the quality of parenting appears to be similar across both groups of parents.</p

International comparisons of behavioral and emotional problems in preschool children: parents’ reports from 24 societies

International comparisons were conducted of preschool children’s behavioral and emotional problems as reported on the Child Behavior Checklist for Ages 1½–5 by parents in 24 societies (N¼19,850). Item ratings were aggregated into scores on syndromes; Diagnostic and Statistical Manual of Mental Disorders–oriented scales; a Stress Problems scale; and Internalizing, Externalizing, and Total Problems scales. Effect sizes for scale score differences among the 24 societies ranged from small to medium (3–12%). Although societies differed greatly in language, culture, and other characteristics, Total Problems scores for 18 of the 24 societies were within 7.1 points of the omnicultural mean of 33.3 (on a scale of 0–198). Gender and age differences, as well as gender and age interactions with society, were all very small (effect sizes<1%). Across all pairs of societies, correlations between mean item ratings averaged .78, and correlations between internal consistency alphas for the scales averaged .92, indicating that the rank orders of mean item ratings and internal consistencies of scales were very similar across diverse societies

“Tell me about your child, the relationship with your child and your parental experiences”: A qualitative study of spontaneous speech samples among parents raising a child with and without Autism Spectrum Disorder, Cerebral Palsy or Down Syndrome

Ample quantitative studies have shown that parents raising children with neurodevelopmental disabilities are prone to experience more stress and challenges in their parenthood. Notwithstanding the strength of this line of research, qualitative studies are crucial to grasp the complex reality of these parenting experiences. This qualitative study adopted the Self-Determination Theory to analyze parents’ described experiences, appraising both challenges and opportunities in parents’ psychological need for autonomy, relatedness, and competence. A multi-group comparative design is adopted to examine similarities and differences in the perspectives of 160 parents raising an adolescent with autism spectrum disorder, cerebral palsy, Down syndrome, or without a disability (M age child = 13.09 years, 67.5% boys). Parents’ perspectives were examined through speech samples probing parents to talk spontaneously about their child, their relationship with the child, and their parental experiences. Forty samples in each group were randomly chosen from a larger dataset and were analyzed using deductive thematic analysis. Parents of children with a disability described more need-frustrating but also more autonomy-satisfying experiences compared to parents of children without a disability. Parents of children with autism spectrum disorder reported the most challenges concerning their relatedness with their child and their own parental competence. Parents raising a child with cerebral palsy expressed the most worries about their child’s future and continuity of care. Parents of a child with Down syndrome described the most need-satisfying experiences in their family life. This study offers a more balanced view on the realm of parenting a child with a neurodevelopmental disability

Expressed emotion in families of children with and without Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome: Relations with parenting stress and parenting behaviors

This study examined the family emotional climate as assessed by Five Minute Speech Samples and the relation with parenting stress and parenting behaviors among parents of children (6–17 years, 64.7% boys) with autism spectrum disorder, cerebral palsy, Down syndrome, and without any known disability (n = 447). The large majority of parents (79%) showed low levels of Expressed Emotion, an indicator of a positive family climate. In all groups, more Emotional Over-involvement, more Criticism and fewer expressions of Warmth were associated with higher levels of parenting stress. Across groups, Emotional Over-involvement was related to more autonomy-supportive parenting, Criticism to more psychologically controlling and overreactive parenting, and Warmth was associated with more responsive and less psychologically controlling and overreactive parenting

Interventions to improve executive functions in children and adolescents with acquired brain injury:a systematic review and multilevel meta-analysis

To investigate the effectiveness of interventions aiming to improve hot and cold executive functions (EFs) in children and adolescents with acquired brain injury (ABI) and to examine whether characteristics of the intervention, participants, etiology of ABI (Traumatic-brain-injury [TBI] or non-TBI), time of assessment, or study quality moderate intervention effects. Whereas cold EFs refer to purely cognitive EFs, hot EFs refer to the affective aspects of these cognitive skills. A total of 970 participants from 23 randomized-controlled-trial studies (112 effect sizes [ES]) were included. A three-level random effects approach (studies, ES, individual participants) was used. Moderation analyses were conducted through meta-regressions. The three-level random effects model showed a better fit than the two-level model. Almost all individual studies showed non-significant ES across outcomes but in combination interventions were effective (Cohen’s d = 0.38, CI 0.16 ~ 0.61). Lower methodological quality, inclusion of participants with non-TBI, and parental participation predicted larger ES. Participants’ age, time of assessment, number of sessions, and focus on hot or cold EFs were not related to ES. We found no evidence of publication bias. Interventions are effective with small to medium ES according to conventional criteria. Intervention effects do not seem to fade away with time. Parent participation in the intervention is important to improve EFs. The efficacy of interventions seems larger when non-TBI is part of the etiology of ABI. Variation between studies is relevant for tracing the effective intervention characteristics. Most studies are conducted in adolescence, and studies in early childhood are needed.</p

Preschool psychopathology reported by parents in 23 societies: testing the seven-syndrome model of the child behavior checklist for ages 1.5-5

Objective: To test the fit of a seven-syndrome model to ratings of preschoolers' problems by parents in very diverse societies. Method: Parents of 19,106 children 18 to 71 months of age from 23 societies in Asia, Australasia, Europe, the Middle East, and South America completed the Child Behavior Checklist for Ages 1.5-5 (CBCL/1.5-5). Confirmatory factor analyses were used to test the seven-syndrome model separately for each society. Results: The primary model fit index, the root mean square error of approximation (RMSEA), indicated acceptable to good fit for each society. Although a six-syndrome model combining the Emotionally Reactive and Anxious/Depressed syndromes also fit the data for nine societies, it fit less well than the seven-syndrome model for seven of the nine societies. Other fit indices yielded less consistent results than the RMSEA. Conclusions: The seven-syndrome model provides one way to capture patterns of children's problems that are manifested in ratings by parents from many societies. Clinicians working with preschoolers from these societies can thus assess and describe parents' ratings of behavioral, emotional, and social problems in terms of the seven syndromes. The results illustrate possibilities for culture general taxonomic constructs of preschool psychopathology. Problems not captured by the CBCL/1.5-5 may form additional syndromes, and other syndrome models may also fit the data.Dr. Ivanovo receives research and salary support from the Research Center for Children, Youth, and Families, which publishes the Child Behavior Checklist [CBCL]. Dr. Achenbach is President of the Research Center for Children, Youth, and Families, and receives remuneration. Dr. Rescorla receives remuneration from the Research Center for Children, Youth, and Families. Dr. Harder previously held a University of Vermont Postdoctoral Fellowship funding by the Research Center for Children, Youth, and Families. Drs. Bjarnadottir, Gudmundsson, Leung, Verhulst, and Mr. Gudmundsson, receive research support from the sole of the CBCL. Dr. Bilenberg has received honoraria from Eli Lilly and Co., Novartis, Neuroscience, and Janseen Cilag. He has received research support from the Danish Research Foundation, the Lundbeck Foundation, Hermansens Mindelegat, and Mods Clausen Fond. Dr. Rapes has received research support from the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences. Dr. Jusiene has received research support from the Lithuanian Science and Studies Foundation. Drs. Ang, Capron, Dias, Dobrean, Doepfner, Duyme, Erol, Esmaeili, Ezpeleta, Frigerio, Goncalves, Jung, Kim, Liu, Oh, Plueck, Pomo limo, Shahini, Silva, Simsek, Souronder, Valverde, Van Leeuwen, and Zubrick, Ms. De Paw, Ms. Kristensen, Mr. Lecannelier, Ms. Montirosso, Ms. Jetishi, Ms. Woo, and Ms. Wu report no biomedical financial interests or potential conflicts of interest.info:eu-repo/semantics/publishedVersio