How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism

Goedeke, Sonja; Shepherd, Daniel; Landon, Jason; Taylor, Steve M.

doi:10.1016/j.rasd.2019.01.005

Cited by 40 publications

(20 citation statements)

References 44 publications

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“…Caregivers who felt socially supported more often belonged to the low negative impact class, a finding consistent with past research (Bishop et al, 2007; Carr & Lord, 2012; Goedeke et al, 2019; Marsack & Samuel, 2017; Zaidman-Zait et al, 2017). This is another factor that may often get lost during typical diagnostic assessments or medical management that often focus on autism or psychiatric symptoms.…”

Section: Discussionsupporting

confidence: 89%

Trajectories of Perceived Negative Impact in Parents of Individuals with Autism Spectrum Disorders from 9 to 25 years of age

Christopher

Elias

Lord

2022

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Caregivers raising a child with autism experience increased parental burden, though many have positive experiences as well. Perceived negative impact, a form of parental burden, is the degree to which a caregiver reports negative financial, social, and emotional experiences associated with having a child with a disability. This longitudinal study defined parental perceived negative impact trajectory classes across time, determined predictors, and explored the relationship between functional adult outcomes and impact class. Participants (n = 209) were comprised of caregivers whose child received an ASD diagnosis or had developmental delay. Latent class growth modeling defined three trajectory classes (e.g., low [n = 68, 32.54%], medium [n = 98, 46.89%], and high [n = 43, 20.57%]). Regressions revealed the low impact trajectory class had more caregivers who were racial minorities, less educated, and more socially supported. Membership in the high negative impact class was associated with increased childhood hyperactivity, irritability, autism symptomology, and poor adaptive skills. The low negative impact trajectory class was associated with young adults achieving more functional outcomes. Overall negative impact declined over time all for all classes, though never completely subsided. Possible implications for clinical practices are discussed

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Section: Discussionsupporting

confidence: 89%

Trajectories of Perceived Negative Impact in Parents of Individuals with Autism Spectrum Disorders from 9 to 25 years of age

Christopher

Elias

Lord

2022

Preprint

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“…It is important to notice that other variables not related to children have often been associated with parental stress, e.g. perceived support (Goedeke et al, 2019) or parental cognition (e.g., Mindfulness; Conner & White, 2014). The limitation of this study should not suggest that PS is linked solely to individuals' characteristics, since it actually results from a complex interplay between individual, biological and environmental characteristics.…”

Section: Discussionmentioning

confidence: 99%

Clinical and individual features associated with maternal stress in young adolescents with autism spectrum disorder

et al. 2021

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Parents of people with autism spectrum disorder experience both negative stressful and positive events. Several clinical and socio‐demographic features of children on the autism spectrum have been associated with parenting stress in their families. However, there have been few studies that focus on adolescents and the role of cognitive impairment has rarely been addressed. The main aim of the present research is to explore associations between autism symptoms, cognitive impairment, emotional and behavioral problems, socio‐demographic features, and maternal stress in a sample of young adolescents with Autism Spectrum Disorder with and without cognitive impairment. Cognitive impairment and emotional and behavioral problems are associated with maternal stress, while autism symptoms seem to play a minor role. Maternal education and occupation are only associated with maternal stress in the group with cognitive impairment, while maternal age is stress‐associated in the group of adolescents without cognitive impairment. Age‐related implications for intervention and future research directions are discussed. Lay Summary Parents of individuals on the autism spectrum are exposed to both negative stressful and enriching experiences during their parenthood. While the influence of several child characteristics and socio‐demographic features on parental stress during childhood has been widely explored in past studies, studies on teenagers are limited. The aim of the present research is to explore the influence of several characteristics on maternal stress levels in families with teenagers on the autism spectrum. We found that cognitive impairment and emotional and behavioral problems are associated with maternal stress, while autism symptoms seem to play a minor role. Socio‐demographic features are not associated with maternal stress. Broadly speaking, the subjective perception of parental distress in both groups is less related to teenagers' characteristics then the perception of having a difficult interaction with the teenagers. We divided our participants into two groups (one group with cognitive impairment and the other group without). We found that mothers of teenagers with cognitive impairment are generally more stressed compared to the other group. Furthermore, we confirm that emotional and behavioral problems seem to play a major role in maternal stress (especially in the group without cognitive impairment), while autism symptoms seem to play a minor role. Furthermore, we found that maternal education/occupation and maternal age are associated with maternal stress in the group with and the group without cognitive impairment respectively. This research highlights the association between several variables and stress in mothers of adolescents on the spectrum. Results are discussed in the framework of previous findings highlighting the lack of adequate care and support services for families, especially for those of adolescents on the spectrum with cognitive impairment.

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“…This result is in line with the study carried out in New Zealand with 585 parents of children with autism spectrum disorders, a subgroup of CRIANES. 22 In this study, the age of the parents was also negatively correlated with the social support perceived, and the hypothesis elaborated by…”

Section: Discussionmentioning

confidence: 51%

“…Factors associated with social support Baldini PR, Lima BJ, Pina JC, Okido ACC Factors associated with social support Baldini PR, Lima BJ, Pina JC, Okido ACC the authors to explain such correlation was as follows: the parents' adaptive coping skills tend to increase over time, which can justify the lower availability of people because they understand that the parents do not need so much support as in the beginning. 22 In the same perspective, a study that applied the MOS-SSS instrument to 75 mothers of children born prematurely, suggests that greater availability of social support can be due to the age and marital status of the mothers participating in their study, who were mostly young and with a partner. According to the researchers, modifications and losses of network components are common and, therefore, of the social support available over time.…”

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confidence: 99%

Mães de crianças que necessitam de cuidados contínuos e complexos: fatores associados ao apoio social

et al. 2021

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Resumo Objetivo analisar os fatores associados ao apoio social às mães de crianças que necessitam de cuidados contínuos e complexos. Método estudo observacional, analítico e transversal, de abordagem quantitativa. A coleta de dados ocorreu nos ambulatórios de um hospital pediátrico localizado no interior do estado de São Paulo. Participaram do estudo 36 mães, que responderam a um instrumento de caracterização e ao Medical Outcomes Study- Social Support Survey. Para análise estatística foram utilizados os testes Mann-Whitney, Kruskal-Wallis e Correlação de Spearman. Seguiram-se os preceitos éticos de pesquisas que envolvem seres humanos. Resultados o apoio social afetivo, material e de interação social apresentaram escores satisfatórios (acima de 80 pontos). Os escores das dimensões informação e emocional foram 78,06 e 78,33, respectivamente. A variável idade materna apresentou correlação negativa com o apoio social emocional (0,040) e de informação (0,009). Conclusão e implicações para a prática as mães, em especial as mais velhas, recebem menos apoio de pessoas que possam lhe orientar e dar conselhos, bem como de alguém de confiança para falar sobre seus problemas. Tal resultado pode subsidiar o planejamento de estratégias de intervenção com famílias, a fim de fortalecer o apoio social.

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How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism

Cited by 40 publications

References 44 publications

Trajectories of Perceived Negative Impact in Parents of Individuals with Autism Spectrum Disorders from 9 to 25 years of age

Trajectories of Perceived Negative Impact in Parents of Individuals with Autism Spectrum Disorders from 9 to 25 years of age

Clinical and individual features associated with maternal stress in young adolescents with autism spectrum disorder

Mães de crianças que necessitam de cuidados contínuos e complexos: fatores associados ao apoio social

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