Parents of children with autism spectrum disorder (ASD) often report poor psychological well‐being, including a high level of parenting stress and depressive symptoms. Little is known about the ...extent to which poor parent psychological well‐being alters the emotional quality of the parent‐child relationship in a context of child ASD. This study examined the association between actor (one's own) and partner (one's partner's) level of parenting stress and depressive symptoms and the emotional quality of the parent‐child relationship using a Five Minute Speech Sample (FMSS) in 150 families of children with ASD, aged 5–12 years (85.7% male). Mothers and fathers were aged 38.69 (SD = 5.62) and 40.76 (SD = 6.19), respectively; 76% of mothers and 68% of fathers had a college degree. Structural equation modeling, using Analysis of Moment Structures software, was used to test Actor‐Partner Interdependence Models. Results indicated that mother's level of parenting stress and depressive symptoms were associated with her own FMSS Warmth and Criticism toward the child with ASD 12 months later in negative and positive directions. Mother's level of parenting stress was also negatively associated with father's FMSS Warmth toward the child with ASD 12 months later. Finally, father's level of parenting stress was positively associated with his FMSS Criticism toward the child with ASD. Overall, findings indicate that the mother‐child and father‐child relationship are both impacted by parent psychological well‐being in families of children with ASD; however, actor effects are stronger for mothers and partner effects were only found for fathers. Implications for interventions are discussed.
Los padres de los niños con trastorno del espectro autista (TEA) generalmente informan un bienestar psicológico deficiente, como un alto nivel de estrés por la crianza y síntomas depresivos. Se sabe muy poco acerca de la medida en la que el bienestar psicológico deficiente de los padres altera la calidad emocional de la relación entre padres e hijos en un contexto de TEA de los niños. El presente estudio analizó la asociación entre el nivel de estrés por la crianza y los síntomas depresivos del actor (los de uno) y de la pareja (la pareja de uno) y la calidad emocional de la relación entre padres e hijos usando una muestra del habla de cinco minutos (Five Minute Speech Sample, FMSS) en 150 familias de niños con TEA, de entre 5 y 12 años (85.7% masculino). Las madres y los padres tenían 38.69 (Desviación Típica = 5.62) y 40.76 (Desviación Típica = 6.19) de edad, respectivamente; el 76 % de las madres y el 68 % de los padres tenía un título universitario. Para evaluar los modelos de interdependencia actor‐pareja se utilizaron los modelos de ecuaciones estructurales mediante el software de análisis de estructuras de momentos. Los resultados indicaron que el nivel de estrés por la crianza y los síntomas depresivos de la madre estuvieron asociados con su propia calidez y crítica según la FMSS hacia el niño con TEA doce meses después en direcciones negativas y positivas. El nivel de estrés por la crianza de la madre también estuvo asociado negativamente con la calidez del padre según la FMSS hacia el niño con TEA doce meses después. Finalmente, el nivel de estrés por la crianza del padre estuvo asociado positivamente con su crítica según la FMSS hacia el niño con TEA. En general, los resultados indican que la relación entre la madre y el niño y la relación entre el padre y el niño están ambas influidas por el bienestar psicológico de los padres en las familias de niños con TEA; sin embargo, los efectos del actor son más fuertes para las madres y solo se encontraron efectos de la pareja para los padres. Se debaten las implicancias para las intervenciones.
研究表明自闭症儿童的父母其心理健康状况很糟糕,包括来自如何养育孩子方面的很大程度的压力和抑郁症症状。自闭症儿童和父母的亲子关系的情感质量在多大程度上被父母的较差的心理健康改变,关注此类问题的研究还很少。本研究选取150个家有5‐12岁自闭症儿童(85.7%为男孩)的家庭为研究对象,使用FMSS 五分钟言谈样板来研究父母中的主体一方和伴侣一方在育儿方面的压力水平和抑郁症状与亲子关系的情感质量之间的关系。研究对象中母亲年龄为38.69 (标准差=5.62),父亲的年龄为40.76(标准差=6.19)。76%的母亲和68%的父亲为大学教育程度。本研究使用AOMS结构分析软件,用 结构方程模型测试主体‐伴侣相互依存模型。结果显示 12个月后,母亲方面的育儿压力水平和抑郁症状在与其对自闭症孩子FMSS 热情的关联是负相关,与FMSS批评的关联是正相关。12个月后,母亲方面的育儿压力水平与父亲的对待自闭症孩子FMSS 热情程度是负相关的。最后,父亲的育儿压力水平和对自闭症儿童的FMSS 批评是正相关的。总而言之,研究结果显示在有自闭症孩童家庭里母亲与孩子的关系,父亲与孩子的关系,都受到成人的心理健康状况的影响;但是母亲作为主体的影响比父亲的要大,父亲只是作为伴侣一方施加影响。论文讨论了如何采取干预措施。
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited ...understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child’s behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F1, 274 = 5.82,
p
= .017); however, perceived difficult child behavior was a stronger predictor of family impact (t6 = 13.11,
p
< .001) than later diagnostic group (
t
6 = − 2.10,
p
= .037), and child functioning did not predict family impact (
t
6 = -0.31,
p
= .76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a ...substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content. Inclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts. 119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Autistic youth are at risk for internalizing mental health problems such as depression and anxiety. Similarly, parents of autistic youth report higher levels of depression than parents of typically ...developing children. The goal of this study was to examine bidirectional associations between parent depression symptoms and the internalizing problems of autistic youth in 188 families across four time points (T1–T4; spaced 12 months apart). A cross-lagged panel model revealed that mother (T1 and T2) and father (T1) depression symptoms positively predicted the youth’s internalizing problems 12 months later. The youth’s internalizing problems at T3 positively predicted maternal depression symptoms at T4. Future research should explore genetic and environmental pathways that link parent depression and internalizing problems in autistic youth.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Little research has examined family emotional climate in the context of having a child with autism spectrum disorder (ASD). The goal of the current study was to determine how the emotional quality of ...family subsystems (parent–child and parent couple relationships, for both mothers and fathers) combine to create various classes of family emotional climate and to identify predictors of class membership in 148 families of children with ASD. The emotional quality of family subsystems was assessed using Five Minute Speech Samples from mothers and fathers. In total, 148 families of children with ASD (86% male) aged 6–13 years were included in analyses. About one-third of parents did not have a college degree and more than two-thirds were of non-Hispanic White origin. Latent class analysis revealed that 43% of the sample was characterized by high levels of warmth and low levels of criticism in both the parent–child and parent couple relationships; 12% of the sample was characterized by low warmth and high criticism in both sets of relationships; and the rest of the sample was divided among three additional classes of emotional climate characterized by different configurations of warmth and criticism across both sets of relationships. Parent level of broader autism phenotype and child emotional and behavioral problems were associated with emotional climate class membership. Implications for interventions are discussed.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Parents of children with autism spectrum disorder (ASD) show increased levels of parenting stress, but only one study has examined this association before a diagnostic evaluation. We conducted a ...cross-sectional study of parenting stress in 317 low SES parents with children at-risk for ASD before a diagnostic evaluation. Multiple regression modeling evaluated the associations between parenting stress and parent and child factors. Parenting stress was negatively associated with social support and positively associated with active avoidance coping and parental worry. However, parenting stress was not associated with the child’s ASD symptom severity or adaptive functioning, except for self-direction. Findings suggest parenting stress among parents of children at risk of ASD should be assessed prior to diagnosis.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, ...leisure, and routine daily care during COVID-19.
The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic.
A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic.
Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048).
Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Significant disparities exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk of autism spectrum disorder; yet, little is known about parent ...experiences throughout the diagnostic process that may contribute to or help explain these disparities. The current study examined longitudinal trajectories of parenting stress, coping, and perceived family impact during the autism spectrum disorder diagnostic process among an ethnically and racially diverse low-income, urban sample, allowing for comparisons between Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress (χ2 = 5.35(1), p = 0.021), avoidant (χ2 = 9.66(1), p = 0.002) and approach (χ2 = 8.61(1), p = 0.003) coping, and negative family impact (χ2 = 5.39(1), p = 0.020) across time (main effects) compared with non-Hispanic families. Furthermore, there were differences in the change in use (Time Period × Ethnicity interaction effects) of both avoidant (χ2 = 10.80(3), p = 0.013) and approach (χ2 = 11.57(3), p = 0.009) coping, as well as negative family impact (χ2 = 9.81(3), p = 0.020), between Hispanic and non-Hispanic parents over time. These differences begin to shed light on the unique experiences of Hispanic parents. Because of the strengths that Hispanic families demonstrate, interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience in non-Hispanic families.
Lay abstract
Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Autistic individuals and their families are at risk for poor outcomes in employment and mental health and may be vulnerable to long-term effects of broader societal conditions. The aim of the current ...longitudinal study was to understand the impact of the Great Recession of 2007-2009 on autistic individuals and their mothers (N = 392). Hierarchical linear modeling (HLM) results indicated that problem behavior of autistic adults increased in the years following the recession. The rate at which autistic individuals moved away and lived separately from their mothers also slowed during the recession. Mothers experienced significantly higher levels of depressive symptoms postrecession, compared to prerecession. In many other respects, the autistic individuals and their mothers did not experience negative outcomes, suggesting resilience and a strong safety net. These included the physical health and vocational/employment status of the autistic adults and their mothers. Results point to specific areas of vulnerability of autistic individuals and their mothers during the economic downturn, as well as a broad pattern of resilience in these families.
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