Psychometric Analyses of the Challenges and Needs Survey for Family Caregivers of Individuals with Autism Spectrum Disorder: Implications for Practice

2021 ◽  
pp. 0192513X2110544
Author(s):  
Gloria K. Lee ◽  
Carolyn M. Shivers

Understanding the needs and stressors of caregivers of individuals with autism spectrum disorder (ASD) informs targeted support strategies. However, most caregiver needs measures lack the breadth of experiences relevant to these families. This study examined the underlying factor structure of the Challenges and Needs Survey (CANS), a caregiving needs measure designed for family caregivers of individuals with ASD. The sample consisted of 286 family caregivers. Participants completed the CANS either online or in the paper form. Exploratory factor analysis was used to examine the underlying structure of the measure. T-tests and correlations were used to compare results by age and gender of the participants. Exploratory factor analysis resulted in 39 items of four factors: autism-related challenges (child), functional challenges, psychological challenges (parent), and aggressive behaviors (child). Parents with both high stress and high needs reported the lowest levels of mental health functioning.

Autism ◽  
2019 ◽  
Vol 24 (2) ◽  
pp. 437-446
Author(s):  
Christopher Lopata ◽  
James P Donnelly ◽  
Marcus L Thomeer ◽  
Jonathan D Rodgers ◽  
Martin A Volker ◽  
...  

The Adapted Skillstreaming Checklist measures social/social-communication skills and behavioral flexibility/regulation of children with autism spectrum disorder without intellectual disability. Prior studies provided support for the reliability and criterion-related validity of the Adapted Skillstreaming Checklist total score for these children; however, no studies have examined the Adapted Skillstreaming Checklist factor structure. This exploratory factor analysis examined the factor structure and internal consistency of parent ratings on the Adapted Skillstreaming Checklist for a sample of 331 children, ages 6–12 years, with autism spectrum disorder without intellectual disability. Results yielded a correlated three-factor solution. The individual factors and total score demonstrated very good internal consistency reliability. Findings supported the presence and interpretability of three subscales, as well as derivation of a total composite reflecting overall prosocial and adaptive skills and behaviors. Implications for assessment and research are discussed.


Author(s):  
Maria Gevezova ◽  
Danail Minchev ◽  
Iliana Pacheva ◽  
Yordan Sbirkov ◽  
Ralitsa Yordanova ◽  
...  

Background: Although Autism Spectrum Disorder (ASD) is considered a heterogeneous neurological disease in childhood, a growing body of evidence associates it with mitochondrial dysfunction explaining the observed comorbidities. Introduction: The aim of this study is to identify variations in cellular bioenergetics and metabolism dependent on mitochondrial function in ASD patients and healthy controls using peripheral blood mononuclear cells (PBMCs). We hypothesized that PBMCs may reveal the cellular pathology and provide evidence of bioenergetic and metabolic changes accompanying the disease. Method: PBMC from children with ASD and a control group of the same age and gender were isolated. All patients underwent an in-depth clinical evaluation. A well-characterized cohort of Bulgarian children was selected. Bioenergetic and metabolic studies of isolated PBMCs were performed with a Seahorse XFp analyzer. Result: Our data show that PBMCs from patients with ASD have increased respiratory reserve capacity (by 27.5%), increased maximal respiration (by 67%) and altered adaptive response to oxidative stress induced by DMNQ. In addition, we demonstrate а strong dependence on fatty acids and impaired ability to reprogram cell metabolism. The listed characteristics are not observed in the control group. These results can contribute to a better understanding of the underlying causes of ASD, which is crucial for selecting a successful treatment. Conclusion: The current study, for the first time, provides a functional analysis of cell bioenergetics and metabolic changes in a group of Bulgarian patients with ASD. It reveals physiological abnormalities that do not allow mitochondria to adapt and meet the increased energetic requirements of the cell. The link between mitochondria and ASD is not yet fully understood, but this may lead to the discovery of new approaches for nutrition and therapy.


Autism ◽  
2021 ◽  
pp. 136236132110421
Author(s):  
Goldie A McQuaid ◽  
Nancy Raitano Lee ◽  
Gregory L Wallace

Camouflaging in autism spectrum disorder could be a factor in later diagnosis of individuals without co-occurring intellectual disability, particularly among those designated female sex at birth. Little research to date has examined how gender identity impacts camouflaging, however. Further, no study has compared groups that differ in diagnostic timing to directly investigate if later-diagnosed individuals demonstrate elevated camouflaging relative to those receiving an earlier diagnosis. Using the Camouflaging Autistic Traits Questionnaire subscales (Assimilation, Compensation, and Masking), we investigated the roles of sex, gender identity (gender diverse vs cisgender), and diagnostic timing (childhood/adolescent-diagnosed vs adult-diagnosed), and the interactions of these factors, in autistic adults ( N = 502; age 18–49 years). Main effects of sex, gender identity, and diagnostic timing were revealed. Autistic females reported more camouflaging across Camouflaging Autistic Traits Questionnaire subscales compared to males. Gender diverse adults reported elevated camouflaging on the Compensation subscale compared to cisgender adults. Adulthood-diagnosed individuals reported elevated Assimilation and Compensation compared to childhood/adolescence-diagnosed individuals. We discuss how aspects of camouflaging may have particular implications for later diagnostic timing and for the intersection of neurodiversity and gender diversity. Lay abstract Camouflaging in autism spectrum disorder refers to behaviors and/or strategies that mask the presentation of autism spectrum disorder features in social contexts in order to appear “non-autistic” (Attwood, 2007). Camouflaging modifies the behavioral presentation of core autism spectrum disorder features (e.g. social and communication differences), but the underlying autistic profile is unaffected, yielding a mismatch between external observable features and the internal lived experience of autism. Camouflaging could be an important factor in later diagnosis of individuals without co-occurring intellectual disability, especially among those designated female sex at birth. Little research to date has examined how gender identity impacts camouflaging, however. Furthermore, no study has compared groups that differ in diagnostic timing to directly investigate if later-diagnosed individuals show elevated camouflaging relative to those receiving an earlier diagnosis. We used the Camouflaging Autistic Traits Questionnaire subscales (Assimilation, Compensation, and Masking) and investigated the roles of sex, gender identity (gender diverse vs cisgender), and diagnostic timing (childhood/adolescent-diagnosed vs adult-diagnosed), and the interactions of these factors, in autistic adults ( N = 502; ages 18–49 years). Main effects of sex, gender identity, and diagnostic timing were revealed. Autistic females reported more camouflaging across all three Camouflaging Autistic Traits Questionnaire subscales compared to males. Gender diverse adults reported elevated camouflaging on the Compensation subscale compared to cisgender adults. Adulthood-diagnosed individuals reported elevated Assimilation and Compensation compared to childhood/adolescence-diagnosed individuals. We discuss how the aspects of camouflaging may have unique implications for later diagnostic timing and for the intersection of neurodiversity and gender diversity.


2019 ◽  
Vol 34 (2) ◽  
pp. 433-456
Author(s):  
Noreena Kausar ◽  
Bushra Akram ◽  
Saima Dawood ◽  
Fayyaz Ahmad

The major aim of this study was to develop an indigenous Parental Perceived Stress Scale in Urdu for parents of children with Autism Spectrum Disorder (ASD). The research was divided into two phases: In Phase-I, indigenous Parental Perceived Stress Scale was developed and in Phase-II, psychometric properties of the scale were established. An item pool of 46 items was generated based on the Lazarus and Folkman’s (1984) stress model and interviewing the parents having children with ASD. A purposive sampling technique was used to select the sample of 502 parents from different special educational institutes. Generated items were evaluated by a panel of experts and were pilot tested on 25 parents. Exploratory factor analysis fixed to seven factor structure with 42 items. Confirmatory factor analysis yielded 32 item scale revealing Cronbach alpha of .95 indicating the scale as a reliable and valid scale for the measurement of parental perceived stress for parents of children with ASD. Clinical implications of the study indicate its use for counseling and clinical services.


Author(s):  
Jorge Bravo-Benítez ◽  
María Nieves Pérez-Marfil ◽  
Belén Román-Alegre ◽  
Francisco Cruz-Quintana

The main objective of this study was to analyse the experience of grief and feelings of loss in family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the perceived overload from taking on the primary caregiver role. Twenty family caregivers of children with ASD participated. The family members were assessed using an ad-hoc semi-structured interview that addressed the families’ reactions to the diagnosis, implications for daily functioning, and concerns for the immediate and long-term future of their relatives with ASD. The results indicate that family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact that having and caring for a child with these characteristics has on all aspects of their lives. These data highlight the importance of creating support and intervention programmes and services focused on the feelings and manifestations of ambiguous grief that occur in these family members, in order to improve their well-being and quality of life and reduce caregiver role overload.


2015 ◽  
Vol 6 (1) ◽  
Author(s):  
Alycia K Halladay ◽  
Somer Bishop ◽  
John N Constantino ◽  
Amy M Daniels ◽  
Katheen Koenig ◽  
...  

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