Still stressed but feeling better: Well-being in autism spectrum disorder families as children become adults

Pozo, Pilar; Sarriá, Encarnación

doi:10.1177/1362361315583191

Cited by 32 publications

(25 citation statements)

References 61 publications

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“…This position is well-supported by several previous studies (Baker-Ericzén, Brookman-Frazee, & Stahmer, 2005; Bitsika & Sharpley, 2004; Carter et al, 2009; Duarte et al, 2005; Hastings & Brown, 2002; Olsson & Hwang, 2001; Pisula, 2007; Pozo & Sarria, 2015). Additionally, this study assumes this added stress and depression can influence parent perceptions and/or reports of their child's sleep.…”

Section: Stress In Families Raising Children With Asdsupporting

confidence: 89%

Sibling sleep—What can it tell us about parental sleep reports in the context of autism?

Schwichtenberg¹,

Hensle²,

Honaker³

et al. 2016

Clinical Practice in Pediatric Psychology

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Sleep problems are common in families raising children with Autism Spectrum Disorder (ASD). Clinicians often depend on parent reports of child sleep but minimal research exists to address the accuracy or biases in these reports. To isolate parent-report accuracy (from differences in sleep behaviors), the sleep of younger siblings were assessed within a two-group design. The present study compared parent diary reports of infant sibling sleep to videosomnography and actigraphy. In the high-risk group, families had at least one child with ASD and a younger sibling (n = 33). The low-risk comparison group had no family history of ASD (n = 42). We confirmed comparable sleep behaviors between the groups and used paired t tests, two-one-sided-tests (TOST), and Bland-Altman plots to assess parent report accuracy. The parameters of sleep onset, nighttime sleep duration, awakenings, morning rise time, and daytime sleep duration were evaluated. Diary and videosomnography estimates were comparable for nighttime sleep duration, morning rise time, and awakenings for both groups. Diary and actigraph estimates were less comparable for both groups. Daytime sleep duration estimates had the largest discrepancy with both groups reporting (on average) 40 additional minutes of sleep when compared to actigraphy estimates. In the present study, families raising children with ASD were just as accurate as other families when reporting infant sleep behaviors. Our findings have direct clinical implications and support the use of parent nighttime sleep reports.

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Section: Stress In Families Raising Children With Asdsupporting

confidence: 89%

Sibling sleep—What can it tell us about parental sleep reports in the context of autism?

Schwichtenberg¹,

Hensle²,

Honaker³

et al. 2016

Clinical Practice in Pediatric Psychology

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“…Parents also worry about what will happen to their children when they are not around to care for them anymore, and this might impact their quality of life in a significant manner (Eaves and Ho 2008;van Heijst and Geurts 2014). A few studies showed an improvement in maternal well-being when their child becomes adult (Lounds et al 2007), as well as a decrease in depression and anxiety in parents of adolescents and adults compared to parents of children, but the levels of stress remained the same (Pozo and Sarriá 2015). As regards the potential factors related to parental QoL at adulthood, Boehm et al (2015) reported that a higher family QoL was related to lower frequency of challenging behaviors, lower support needs, and higher strength of parental religious faith in a sample of young adults with autism or intellectual disability.…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in Parents of Young Adults with ASD: EpiTED Cohort

Rattaz

Michelon

Roeyers

et al. 2017

J Autism Dev Disord

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The impact of ASD on parental QOL was evaluated in the EpiTED cohort study at early adulthood. Two third of parents of young adults with ASD (66.7%) reported that their QoL was at least moderately altered. The perceived impact of ASD on parental QoL was related to the young adults' level of adaptive skills, as well as to symptom severity and the presence of challenging behaviors, which appeared to be the main risk factor. The study of change between adolescence and early adulthood showed that parents whose children had a decrease in challenging behaviors perceived a decreased impact on their QoL. These results argue for the importance to propose specific interventions to target associated challenging behaviors in ASD.

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“…Parental stress has been described in other pediatric cohorts with neurodevelopmental syndromes or autism (Briegel et al, 2008;Hartley et al, 2012;Pozo & Sarria, 2015). In children with NF1, mothers reported higher parenting stress than the mothers of typically developing children (Esposito et al, 2014).…”

Section: Parental Stressmentioning

confidence: 98%

Worries and needs of adults and parents of adults with neurofibromatosis type 1

Rietman

Helden²,

Both³

et al. 2018

American J of Med Genetics Pt A

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Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health‐care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow‐up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers.

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Still stressed but feeling better: Well-being in autism spectrum disorder families as children become adults

Cited by 32 publications

References 61 publications

Sibling sleep—What can it tell us about parental sleep reports in the context of autism?

Sibling sleep—What can it tell us about parental sleep reports in the context of autism?

Quality of Life in Parents of Young Adults with ASD: EpiTED Cohort

Worries and needs of adults and parents of adults with neurofibromatosis type 1

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