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Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.

ABSTRACT: Whereas it is well documented how parents experience the diagnostic process of their child with autism spectrum disorder (ASD), less is known about parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. This mixed-method study investigated these experiences as well as barriers and improvement strategies regarding early detection in the Netherlands. A parental survey (N = 45) showed that, on average, initial concerns started at 22 months. A focus group (N = 10) revealed multiple barriers and proposed strategies of improvement in three domains: "Knowledge and Expertise", "Attention to Parental Needs" and "System and Organization". Strategies to improve early identification will be discussed based on parental perspectives and professional perspectives.

SUBMITTER: Snijder MIJ

PROVIDER: S-EPMC9296376 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.

Snijder Michelle I J MIJ Langerak Ilse P C IPC Kaijadoe Shireen P T SPT Buruma Marrit E ME Verschuur Rianne R Dietz Claudine C Buitelaar Jan K JK Oosterling Iris J IJ

Journal of autism and developmental disorders 20210901 8

Whereas it is well documented how parents experience the diagnostic process of their child with autism spectrum disorder (ASD), less is known about parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. This mixed-method study investigated these experiences as well as barriers and improvement strategies regarding early detection in the Netherlands. A parental survey (N = 45) showed that, on average, initial co ...[more]

PMID: 34468907

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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.

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.

Dataset Information

Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.

Publications

Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.

Similar Datasets

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