Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.
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ABSTRACT:
SUBMITTER: Snijder MIJ
PROVIDER: S-EPMC9296376 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies.
| S-EPMC6565652 | biostudies-literature
Project description:The autism spectrum disorder phenotype varies by social and communication ability and co-occurring developmental, behavioral, and medical conditions. Etiology is also diverse, with myriad potential genetic origins and environmental risk factors. Examining the influence of parental broader autism phenotype-a set of sub-clinical characteristics of autism spectrum disorder-on child autism spectrum disorder phenotypes may help reduce heterogeneity in potential genetic predisposition for autism spectrum disorder. We assessed the associations between parental broader autism phenotype and child phenotype among children of age 30-68 months enrolled in the Study to Explore Early Development (N = 707). Child autism spectrum disorder phenotype was defined by a replication of latent classes derived from multiple developmental and behavioral measures: Mild Language Delay with Cognitive Rigidity, Mild Language and Motor Delay with Dysregulation (e.g. anxiety/depression), General Developmental Delay, and Significant Developmental Delay with Repetitive Motor Behaviors. Scores on the Social Responsiveness Scale-Adult measured parent broader autism phenotype. Broader autism phenotype in at least one parent was associated with a child having increased odds of being classified as mild language and motor delay with dysregulation compared to significant developmental delay with repetitive motor behaviors (odds ratio: 2.44; 95% confidence interval: 1.16, 5.09). Children of parents with broader autism phenotype were more likely to have a phenotype qualitatively similar to broader autism phenotype presentation; this may have implications for etiologic research.
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Project description:We investigated the relationship between adverse childhood experiences (ACEs) and children's internalising symptoms and externalising problems in the Wales Adoption Cohort Study, a prospective longitudinal study that used case file records (n = 374) for a sample of British children adopted from care (M = 2 years, 55% male). Parents (n = 96) completed questionnaires at 3-5 months, 15-17 months, and 31-33 months post-placement. We hypothesised that: (1) children adopted from care would have experienced more ACEs than children in the general population; (2) the number of ACEs would be associated with higher internalising symptom and externalising problem scores; and (3) adoptive parental warmth would moderate the relationship between ACEs and post-placement internalising symptoms and externalising problems. Nearly half (42%) of the children experienced four or more ACEs. Internalising symptoms and externalising problems were significantly higher than the UK general population. The number of ACEs was associated with internalising symptoms 3 years post-adoptive placement but this relationship was moderated by adoptive parental warmth. This study profiles the experiences and characteristics of a national sample of adopted children and highlights the potential importance of parent warmth as a factor that ameliorates the impact of ACEs on poor child outcomes.
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Project description:ObjectivesMuch of the literature on diagnostic experiences of autism focuses on parental perspectives. Few studies have explored how health care professionals conceptualise parental experiences of the diagnostic process. The current study examines clinical perspectives of the diagnostic process with a focus on the perceived impact of assessment on families.MethodsQualitative interviews were conducted with 25 health care professionals from various National Health Service child and adolescent mental health services and general practices in the United Kingdom. Interviews were transcribed verbatim and data were analysed using a thematic approach.ResultsTwo main themes were identified: (1) stress and the autism spectrum disorder diagnostic process and (2) expectations of the diagnostic pathway. The main sources of stress perceived by the health care professionals related to diagnostic delay and ambiguity around the diagnostic process, with parents facing significant hurdles in understanding their child's behaviour. Many health care professionals also reported a struggle to navigate differing expectations of the diagnostic process between parents and clinicians, as well as managing objectivity in the face of significant distress. Parent internalised stigma and guilt was a key component of the health care professional's perception of sources of stress around the diagnostic process.ConclusionThe vast majority of clinicians recognised the diagnostic pathway as a significant source of stress for parents, with many hurdles and battles to finalise the process.
| S-EPMC8287381 | biostudies-literature
Project description:Lay abstractAutism spectrum disorder (ASD) can be diagnosed as early as 18 months of age. However, the average age at diagnosis in the United States is over 2 years later. A lot has been written about the many barriers families face when seeking a diagnosis for their child. One area of research that has received no attention is whether separation between a child's biological parents affects the age at which a child is diagnosed with ASD. This study was conducted among 561 children who were receiving an ASD diagnosis for the first time. On average, these children were 5 years of age. The study took place in an urban, outpatient specialty autism clinic in the United States. Biological parents self-reported their relationship status during the evaluation. This was categorized as either "together" (married or living together but not married) or "not together" (separated, divorced, or never married). At the time of diagnosis, most children's biological parents were together (69%). We found children of parents who were together were diagnosed 1.4 years earlier than those who were not together. These findings have important implications for providing support to families that separate early in a child's life, with the goal of reducing the age at ASD evaluation among single parents and those who have been separated from their child's other biological parent. Providing support to these families is important since earlier age at diagnosis leads to earlier intervention, which can improve long-term outcomes for the child, family, and community as a whole.
| S-EPMC8446293 | biostudies-literature
Project description:ObjectiveTo examine parental perspectives/rankings of the most important weight-management clinical practices and to determine whether preferences/rankings differ when parents disagree that their child is overweight.MethodsWe performed mixed-methods analysis of a 32-question survey of parents of 2- to 18-year-old overweight children assessing parental agreement that their child is overweight, the single most important thing providers can do to improve weight status, ranking American Academy of Pediatrics-recommended clinical practices, and preferred follow-up interval. Four independent reviewers analyzed open-response data to identify qualitative themes/subthemes. Multivariable analyses examined parental rankings, preferred follow-up interval, and differences by agreement with their child's overweight assessment.ResultsThirty-six percent of 219 children were overweight, 42% obese, and 22% severely obese; 16% of parents disagreed with their child's overweight assessment. Qualitative analysis of the most important practice to help overweight children yielded 10 themes; unique to parents disagreeing with their children's overweight assessments was "change weight-status assessments." After adjustment, the 3 highest-ranked clinical practices included, "check for weight-related problems," "review growth chart," and "recommend general dietary changes" (all P < .01); parents disagreeing with their children's overweight assessments ranked "review growth chart" as less important and ranked "reducing screen time" and "general activity changes" as more important. The mean preferred weight-management follow-up interval (10-12 weeks) did not differ by agreement with children's overweight assessments.ConclusionsParents prefer weight-management strategies that prioritize evaluating weight-related problems, growth-chart review, and regular follow-up. Parents who disagree that their child is overweight want changes in how overweight is assessed. Using parent-preferred weight-management strategies may prove useful in improving child weight status.
| S-EPMC4808480 | biostudies-literature
Project description:Lay abstractThis is a study of the secondary effects of interventions for young children with autism on their parents. Specifically, we were interested in the impact on parent's sense of efficacy, or how confident and competent a parent feels about themselves as a parent. We tested three ideas: (1) that the style of the intervention, whether it was more or less structured and whether the parent had a more or less formal role, would impact a parent's sense of efficacy; (2) that the intensity of the intervention, how many hours per week the intervention was delivered, would impact parental efficacy; and (3) that the parent's level of stress prior to intervention would impact how intensity and style effected efficacy. We randomly assigned 87 children with autism, age 13-30 months, into one of four conditions: 15 versus 25 intervention hours crossed with two different styles of intervention. We used statistical tests to examine these ideas. We found that parental efficacy was related to intervention intensity but not style. Parents with higher stress at the beginning of a 1-year, home-based, comprehensive intervention program had a higher sense of parenting efficacy if their child received lower intensity intervention; parents with lower stress at baseline had a higher sense of efficacy if their child received higher intensity intervention. If a parent can emerge from the process of diagnosis and early intervention with an increased sense that they can make a difference in their child's life (i.e. increased sense of efficacy), it may set the stage for meeting the long-term demands of parenting a child with autism.
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Project description:Physician recommendation has been shown to be one of the most significant predictors for colorectal cancer (CRC) screening. This study aims to identify the amount of parents of internal medicine residents at NYU who are eligible for CRC screening but have not received it. Investigators will perform an intervention and quantify the amount of parents eligible for CRC screening after the intervention. This study will entail sending 2 brief surveys (one before the intervention and one after) which determine if the parents of the residents are eligible for CRC screening. The intervention will be asking the residents with eligible parents to have a discussion with their parents about CRC screening options and to address their concerns. Investigators will provide a one page document the residents can give their parents as a reference as part of the intervention.
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Project description:The goal of this study was to examine child and parent predictors of children's hostile attribution bias (HAB) with a particular focus on exploring the associations between parents' early attribution of child misbehavior and children's HAB in the transition to school-age. Participants were 241 children (118 girls) of middle-income families who were at risk for school-age conduct problems. Multi-method, multi-informant data were collected on maternal attributions of child misbehavior, parental use of corporal punishment, and child attributes (i.e., verbal IQ, effortful control, theory of mind, emotional understanding) at 3 years, and child HAB in ambiguous situations at 6 years. Results indicated that mothers' internal explanations for children's misconduct may either reduce or increase children's later HAB depending on the specific content of attributions, such that mothers' belief that children misbehave because of their internal state (i.e., emotional state or temperament) was associated with lower levels of child HAB, whereas attributing power-based motives (i.e., manipulative, controlling intentions) in children was associated with higher levels of HAB. The findings are discussed with respect to appreciating the complexity of parents' explanations for children's behavior, and considering parental cognition as a potential target for early identification and prevention of child HAB and related problems.
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