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Caregiver Burden And Health Related Quality Of Life In Receiving A Diagnosis Of An Autism Spectrum Disorder
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Book Synopsis Caregiver Burden and Health-related Quality of Life in Receiving a Diagnosis of an Autism Spectrum Disorder by : Melissa Louise Stuart
Download or read book Caregiver Burden and Health-related Quality of Life in Receiving a Diagnosis of an Autism Spectrum Disorder written by Melissa Louise Stuart and published by . This book was released on 2007 with total page 270 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Burden of Care and Health-related Quality of Life Among Caregivers of Children with Autism Spectrum Disorder by : Rahul Khanna
Download or read book Burden of Care and Health-related Quality of Life Among Caregivers of Children with Autism Spectrum Disorder written by Rahul Khanna and published by . This book was released on 2010 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Autism written by Michael Fitzgerald and published by BoD – Books on Demand. This book was released on 2017-04-12 with total page 346 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book opens with a discussion of neurodiversity and an elaboration of the diagnosis of autism. It then examines factors correlating with autism, including sex bias, month of birth, migration and impact of infant feeding. The next section is on the impact of autism. The neurobiology and genetic section deals with epigenetics and intracellular pathways associated with etiology. The development and behaviour section deals with proprioceptive profiles and joint attention in autism. The final section focuses on interventions including mindfulness, animal assisted activity, social/cultural perspective on autism intervention and physical activity. The book is relevant to all professionals and researchers working with persons with autism, including psychiatrists/psychologists, speech and language therapists, occupational therapists, teachers, nurses and care workers.
Book Synopsis Determinants of Quality of Life in Caregivers of Children with Autism and Autism Concerns by : Colleen M. Harker
Download or read book Determinants of Quality of Life in Caregivers of Children with Autism and Autism Concerns written by Colleen M. Harker and published by . This book was released on 2018 with total page 76 pages. Available in PDF, EPUB and Kindle. Book excerpt: Given the unique demands of raising a child with autism spectrum disorder (ASD), it is necessary to understand the impact on the quality of life (QoL) of their caregivers. Though QoL is considered an important outcome in health services research (Moons et al., 2006; Oliveira, Carvalho, & Esteves 2016), there is a lack of knowledge about QoL in caregivers of children with ASD or caregivers of children for whom there are ASD concerns, but no formal diagnosis. The objectives of the current study were to (1) Examine how having a young child with ASD or ASD concerns affects caregiver QoL, relative to children with other developmental concerns and typical development; (2) Examine profiles across QoL domains within each caregiver group to determine which QoL domains were most impacted relative to other domains; (3) Examine to what extent three levels of determinants contribute to caregiver QoL: family demographic (child age, family income, caregiver employment status, number of children in the home), psychological (parenting stress), and health care (family-centered care); and 4) (Exploratory) Examine the extent to which family centered care moderates the relation between parenting stress and QoL. The sample was drawn from a larger NIH study examining screening and referral practices for children with ASD in primary care provider (PCP) practices and early intervention (EI) agencies in Washington State. The sample was comprised of three groups: caregivers of children with ASD or ASD concerns (ASD/ASD Concerns; n = 42), caregivers of children with other developmental concerns (Other Concerns; n = 34), and caregivers of children with typical development (No Concerns; n = 112). Caregivers completed a measure of family demographics, parenting stress, family-centered care, and QoL at their time of entry in the study. Results indicated that caregivers in the ASD/ASD Concerns group reported significantly lower Psychological and Social QoL than caregivers in the Other Concerns group and the No Concerns group, and significantly lower Environmental QoL and Physical QoL than caregivers in the No Concerns group (Objective 1). For caregivers in the ASD/ASD Concerns group, Social QoL was significantly lower than Environmental and Physical QoL and Psychological QoL was significantly lower than Environmental QoL (Objective 2). Income, parenting stress, and family-centered care were significant predictors for all four QoL domains, while the number of children residing in the home was a significant predictor for Physical QoL only. There was also a significant group by stress interaction for Environmental QoL, such that there was a stronger negative relationship between parenting stress and Environmental QoL for caregivers in the ASD/ASD Concerns group compared to caregivers in the No Concerns group (Objective 3). Family-centered care did not moderate the relationship between parenting stress and QoL as predicted (Objective 4). Overall, these findings suggest that future research is needed to determine how to provide additional support to all caregivers, particularly low-income families and caregivers who are experiencing high levels of parenting stress and low levels of family-centered care.
Book Synopsis Handbook of Quality of Life for Individuals with Autism Spectrum Disorder by : Justin B. Leaf
Download or read book Handbook of Quality of Life for Individuals with Autism Spectrum Disorder written by Justin B. Leaf and published by Springer Nature. This book was released on 2022-06-01 with total page 477 pages. Available in PDF, EPUB and Kindle. Book excerpt: This handbook offers a comprehensive examination of wide-ranging issues relevant to adults diagnosed with autism spectrum disorder. Coverage includes a detailed review of such issues as psychiatric comorbidity, family relationships, education, living in different settings (e.g., group homes, community), meaningful and effective interventions, functional goals (e.g., social, language, vocational, and adaptive behaviors), and curriculum. In addition the book provides unique perspectives of parents as well as individuals diagnosed with autism spectrum disorder who have reached adulthood. Key areas of coverage include: Transitioning adults diagnosed with autism spectrum disorder from educational settings to vocational settings. Strategies that can help create independence for adults diagnosed with autism spectrum disorder. Effective approaches to address issues relating to sexuality for adults diagnosed with autism spectrum disorder. The effectiveness of early intensive behavioral intervention to help adults diagnosed with autism spectrum disorder. Handbook of Quality of Life for Individuals with Autism Spectrum Disorder is an essential reference for researchers, professors, and graduate students as well as clinicians, therapists, and related professionals in clinical child and school psychology, social work, behavioral therapy and related disciplines, including clinical medicine, clinical nursing, counseling, speech and language pathology, and special education.
Book Synopsis An Examination of Quality of Life of Parents of Adult Children Diagnosed with Autism Spectrum Disorder by : Christina Noel Marsack
Download or read book An Examination of Quality of Life of Parents of Adult Children Diagnosed with Autism Spectrum Disorder written by Christina Noel Marsack and published by . This book was released on 2016 with total page 210 pages. Available in PDF, EPUB and Kindle. Book excerpt: To deliver services effectively, social workers need to understand the reality of the lives of both parents and adult children with ASD, as well as understanding the QOL and caregiver burden with which the parents are living.
Book Synopsis Burden, Health Care Needs, and Quality of Life of Family Caregivers of Adults with Autism Spectrum Disorder by : Sophia Dückert
Download or read book Burden, Health Care Needs, and Quality of Life of Family Caregivers of Adults with Autism Spectrum Disorder written by Sophia Dückert and published by . This book was released on 2023 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Sleep and Quality of Life Among Family Caregivers with Children who Have Autism Spectrum Disorders by : Maureen Russell
Download or read book Sleep and Quality of Life Among Family Caregivers with Children who Have Autism Spectrum Disorders written by Maureen Russell and published by . This book was released on 2014 with total page 162 pages. Available in PDF, EPUB and Kindle. Book excerpt: Autism spectrum disorder (ASD) holds potential for significantly impacting the primary caregiver and family, as well as the child with ASD. In particular, sleep problems occur frequently among children with ASD, and their poor sleep may negatively affect that of their caregivers. Health-related quality of life (HRQoL) and Family Quality of Life (FQoL) are salient indices of caregiver and family well-being. This pilot study explored associations between family caregiver sleep problems and caregiver sense of coherence (SOC) or coping on HRQoL and FQoL. Additionally, this study examined relationships between child sleep and behavior problems on caregiver sleep and well-being. Sixty-two family caregivers of children with ASD (M =7.61, range: 6-11 years old) participated in this survey study. Participants provided demographic information and completed measures of HRQoL, FQoL, caregiver sleep, SOC, parental stress, child sleep, and child behavior. Caregivers with longer sleep duration reported better mental health and better FQol. Caregivers who reported insomnia symptoms, non-restorative sleep, and insufficient sleep were more likely to report poorer mental health than caregivers who did not report these sleep disorder symptoms. A stronger caregiver SOC was associated with lower caregiver stress, better mental health, and better FQoL. Significant relationships were found between shorter caregiver sleep duration or sleep disorder symptoms (i.e., difficulty staying asleep, early morning awakening, insufficient sleep) and greater child sleep problems. Moreover, short sleep duration or insufficient sleep among caregivers was significantly associated with greater parenting stress. Notably, biological parents with Restless Legs Syndrome (RLS) had children with more restless sleep and higher rates of some behavior problems. There are a number of potential connections between sleep problems of children with ASD and sleep problems of their caregivers that are likely rooted in genetic, environmental, socio-economic, and behavioral factors. Interventions for sleep problems must address the context of the family and consider that sleep problems may be common to the caregiver and the child. The results of this study support findings from many prior studies and point to salient variables for future research and interventions to promote healthy caregiver sleep.
Book Synopsis Caregiver Burden, Participation, and Sensory Subtypes in Children with Autism by : Brittany N. Hand
Download or read book Caregiver Burden, Participation, and Sensory Subtypes in Children with Autism written by Brittany N. Hand and published by . This book was released on 2016 with total page 164 pages. Available in PDF, EPUB and Kindle. Book excerpt: Results: Results from Chapter 2 revealed that caregivers of children with ASD in different sensory subtypes did not differ in perceived mental and physical health related quality of life, but did differ in level of perceived caregiver strain. When compared with caregivers of children in the Generalized Sensory Difference subtype, caregivers of children in the Sensory Adaptive subtype reported the lowest levels of strain, followed by caregivers of children in the Taste/Smell Sensitive subtype. Caregivers of children in the Postural Inattentive and Generalized Sensory Difference subtypes did not significantly differ in level of strain. Similarly, results from Chapter 3 indicate that children in different sensory subtypes were found to differ in their participation in home, school, and community activities. When compared with children in the Generalized Sensory Difference subtype, children in the Sensory Adaptive subtype had the highest levels of participation, followed by children in the Taste/Smell Sensitive subtype. The Postural Inattentive and Generalized Sensory Difference subtypes did not significantly differ in level of participation. Findings from Chapter 4 identified a subset of 18 SSP items that determine membership to the Taste/Smell Sensitive, Postural Inattentive, or Generalized Sensory Difference subtypes with 94.6% agreement with the existing algorithm based on the 38-item SSP. This subset does not, however, identify members of the Sensory Adaptive subtype. Conclusion: Findings of this dissertation were combined with existing literature to create a decision-making framework that focuses the scope of intervention for each sensory subtype by linking deficits with evidence-based interventions. This body of work improves the clinical and research utility of sensory subtyping in ASD by: 1) linking subtypes to areas of caregiver burden and child participation to target for intervention, and 2) reducing respondent burden by determining sensory subtypes with fewer SSP items. This research contributes much needed empirical evidence to guide clinical decision-making in intervention selection for children with ASD. Future studies are necessary to further these findings and effectively build upon this evidence by examining the degree to which this decision-making framework improves treatment outcomes for children with ASD. Increasing evidence in support of this framework will aid in its clinical translation, where it will likely have a direct positive impact on the quality of care provided for children with ASD.
Book Synopsis New treatment perspectives in autism spectrum disorders by : Roberto Canitano
Download or read book New treatment perspectives in autism spectrum disorders written by Roberto Canitano and published by Frontiers Media SA. This book was released on 2015-04-17 with total page 162 pages. Available in PDF, EPUB and Kindle. Book excerpt: Developing novel and more effective treatments that improve quality of life for individuals with autism spectrum disorders is urgently needed. To date a wide range of behavioral interventions have been shown to be safe and effective for improving language and cognition and adaptive behavior in children and adolescents with ASD. However many people with ASD can receive additional benefit from targeted pharmacological interventions. One of the major drawback in setting up therapeutics intervention is the remarkable individual differences found across individuals with ASD. As a matter of fact the medications that are currently available address only symptoms associated with ASD and not the core domains of social and communication dysfunction. The pathogenesis paradigm shift of ASD towards synaptic abnormalities moved the research to pathway to disease that involve multiple systems and that are becoming the forefront of ASD treatment and are pointing toward the development of new targeted treatments. Some new therapeutics have been tested and others are being studied. In this context single gene disorders frequently associated with ASD such as Rett Syndrome, Fragile X and Tuberous Sclerosis have been of significant aid as neurobiology of these disorders is more clear and has a potential to shed light on the altered signaling in ASD. However much research is needed to further understand the basic mechanisms of disease and the relationship to idiopathic ASD. Clinical trials in children are underway with agents directed to core symptoms and to the associated disorders in the search of new therapeutics and progress are expected with possible new option for therapeutics in ASD in the upcoming future. Children and Adolescents with ASD and their families can provide important information about their experience with new treatments and this should be a priority for future research. In addition, research performed on genetic mouse models of ASD will keep on providing useful information on the molecular pathways dysrupted in the disease, thus contributing to identify novel drug targets.
Book Synopsis Resources and Quality of Life in Caregivers of Children with Autism Spectrum Disorder by : Tiana C Cypher
Download or read book Resources and Quality of Life in Caregivers of Children with Autism Spectrum Disorder written by Tiana C Cypher and published by . This book was released on 2022 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Participants were 23 caregivers of children between the ages of four to twenty-two years old who are diagnosed with autism spectrum disorder and attend the Autism Society of North Carolina (ASNC) Social Recreation program in Winterville, Wilmington, and Newport. The present study evaluated the quality of life in parents of children with autism spectrum disorder, as well as the utilization and availability of resources for their child and the family. Data was collected using an online Qualtrics survey sent out to families by email. The survey consisted of questions regarding demographics, questions from the Questionnaire for Each Treatment regarding the treatments their child with autism receives, and questions from the Family Quality of Life Scale by the Beach Center on Disability. Overall results revealed that parenting is the most satisfying domain of quality of life, and disability related support was the least satisfactory for the parents. Results suggest that families with disability need to identify and enroll their children in early intervention programs and recreation program that help with children's development. The government and school programs should also strive to offer educative sessions for parents and families with children with autism to enhance their contribution outside of school hours.
Book Synopsis Understanding Relationships in Health Related Quality of Life for Parents of Children with Autism Spectrum Disorder by : Norah Louise Johnson
Download or read book Understanding Relationships in Health Related Quality of Life for Parents of Children with Autism Spectrum Disorder written by Norah Louise Johnson and published by . This book was released on 2009 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: Nurses encounter many parents of children with autism spectrum disorder (ASD). Both parents are under stress that ultimately impacts their health related quality of life (HRQL). Few studies assess the mediators of parenting stress on HRQL for both parents. This study explored the relationship of parenting stress, family functioning and HRQL for parenting dyads of children with ASD. Lazarus and Folkman's (1984) Transactional Model of Stress and Coping and Lakey and Cohen's (2000) Social Support Theory framed the study. Implementing a cross sectional, descriptive design, 387 parents (n=64 dyads) of ASD-affected children, from 46 states, completed web-based surveys. Demographics, the Feetham Family Functioning Survey (FFFS), Parenting Stress Scale: Autism (PSS:A), and the Rand 36 HRQL measure were collected. The FFFS discrepancy score (D), quantified differences between expectation and reality. The Rand 36 has a mental (MCS) and a physical (PCS) component scale. A non-parametric Wilcoxon test was used to compare fathers and mothers. Pearson correlation and linear regression were used to analyze relationships. Females' family functioning discrepancy scores between 'what is' and 'should be' family functioning were significantly wider than males, p=.002. The MCS of both parents and the PCS of female parents were negatively related to the stress variables and D scores. For females, higher care-giving stress was related to lower female PCS (p
Book Synopsis Handbook of Research on Advances in Digital Technologies to Promote Rehabilitation and Community Participation by : Simões de Almeida, Raquel
Download or read book Handbook of Research on Advances in Digital Technologies to Promote Rehabilitation and Community Participation written by Simões de Almeida, Raquel and published by IGI Global. This book was released on 2023-12-07 with total page 534 pages. Available in PDF, EPUB and Kindle. Book excerpt: Digital technologies hold immense potential to transform the field of rehabilitation and enable greater community participation for individuals with disabilities. In the Handbook of Research on Advances in Digital Technologies to Promote Rehabilitation and Community Participation, a comprehensive exploration of these cutting-edge technologies and their impact is presented, and it delves into various digital solutions, such as virtual reality, tele-rehabilitation, mobile apps, rehabilitation platforms, and more. The book sheds light on the applications to promote rehabilitation and enhance community involvement. It provides a profound understanding of how these technologies can facilitate remote rehabilitation, foster self-management of illnesses, support independent living, and enhance communication and social participation. Furthermore, it emphasizes the accessibility of information and resources that digital technologies provide, unlocking new possibilities for individuals with disabilities. However, this research goes beyond mere exploration and also examines the challenges and opportunities associated with these digital advancements. The ethical considerations that arise in the utilization of these technologies are addressed, emphasizing the need for responsible and considerate implementation.
Book Synopsis Experiences of Accumulated Stress Among Aging Parent Caregivers of Adults with Autism Spectrum Disorder by : Ian McDonough
Download or read book Experiences of Accumulated Stress Among Aging Parent Caregivers of Adults with Autism Spectrum Disorder written by Ian McDonough and published by . This book was released on 2022 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: With the continuing increased incidence rate of autism spectrum disorder over the decades, there are increasing numbers of adults with autism who require varying levels of lifelong care, typically from parents. It is necessary to understand parents' lived experience of lifelong caregiving, and how their own aging process further impacts life quality. Furthermore, greater understanding of stressors, resources, appraisals, and coping among parent caregivers of children with "high functioning autism" who are transitioning into young adulthood is particularly necessary as services, needs, and experiences for both are nuanced due to functional status, deficits in the service system, and demographic disparities. Given lifespan aspects past research has not addressed, the study focused on development of a measure of parent accumulated stressors, and on interrelations of stressors, perceived social support, future time perspective, burden, satisfaction, and coping on health-related quality of life and meaning in life among 28 parents of young adults with autism. Although proposed quantitative analyses were not completed due to sample size, qualitative analyses on parent experiences and stressors revealed common themes of concern for child's future quality of life, complicated dynamics of providing help to their child overtime, and increased stress related to others' lack of understanding of their child. In total, 10 themes and multiple subthemes were identified in relation to aspects of accumulated stressors. Findings suggest parent stress with this specific population is complex, manifesting in nuanced ways at different life stages. Impacts of the COVID-19 pandemic are also explored, and implications for scientific advancement and clinical services are discussed.
Book Synopsis Geographic Disparity in Mental Health of Caregivers of Children with Autism Spectrum Disorder by : Samantha E. Ault
Download or read book Geographic Disparity in Mental Health of Caregivers of Children with Autism Spectrum Disorder written by Samantha E. Ault and published by . This book was released on 2021 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Background: Caregivers of children with Autism Spectrum Disorder (ASD) have been found to have poor mental health outcomes and higher stress compared to the general population, parents of typically developing children, and parents of children with other chronic health care conditions. Emotional support for caregivers has been shown to buffer the stress and negative effects that some caregivers experience. Caregivers living in rural areas may face additional barriers to obtaining support for themselves due to the lack of local support resources. Purpose: The purpose of this dissertation study is to examine geographic (urban, suburban, and rural setting) disparities in overall mental health and stress for caregivers and the amount of emotional support sources received by caregivers of children with ASD. In addition, the impact emotional support has on caregiver overall mental health and stress for caregivers of children with ASD is explored. Method: A cross-sectional secondary analysis of the 2016-2019 National Survey of Children’s Health (NSCH) data was used to conduct this dissertation study. Complex survey data analyses techniques with bivariable and multivariable linear regression models were employed for the statistical analyses. Results: No geographic disparities were found in caregiver overall mental health, caregiver stress, or emotional support received when controlling for possible confounding variables. Informal emotional support was found to significantly decrease caregiver stress for caregivers of children with ASD when controlling for covariates. In addition, formal emotional support was found to increase stress for caregivers, but this relationship was no longer significant when controlling for covariates. Overall, near or over a quarter of the subpopulation sample in each geographic area reported having no informal support sources and over half reported having no formal support sources. Conclusion: Despite hypotheses based on previous research, geographic location of residence did not predict outcome variables in parents of children with ASD. However, a concerning percentage of the sample in this study reported having no informal or formal emotional support. This is troubling as informal emotional support appears to be beneficial in decreasing caregiver stress for caregivers of children with ASD. Recommendation: Future research is needed to explore the characteristics and types of emotional support found beneficial to caregivers of children with ASD in varying geographic areas. Barriers to receiving emotional support need to be identified and intervention studies are needed to target the lack of emotional support accessed by caregivers of children with ASD. When providing formal emotional support to caregivers of children with ASD, health care providers need to be aware of the possibility of adding stress to caregivers.
Book Synopsis Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders by : Celine A. Saulnier
Download or read book Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders written by Celine A. Saulnier and published by John Wiley & Sons. This book was released on 2018-05-01 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: A practical guide to adaptive behaviors across a range of neurodevelopmental disorders Adaptive behavior assessment measures independent living skills, including communication, social skills, personal care, and practical work skills. For individuals with intellectual disabilities, evaluation of these skills is a critical tool for measuring eligibility and can identify specific skills that must be learned before effective educational interventions can be implemented. Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders describes the role of adaptive behavior in assessment and treatment, and provides clear guidance for measurement. Case samples provide real-world illustration of behaviors and assessment, and systematic comparison of various measures are presented and explained to better inform planning. Individual chapters outline specific adaptive behaviors across a range of neurodevelopmental disorders, giving clinicians, practitioners, students, and researchers a better understanding of diagnostic differentials and how to place independent skill programming in treatment and intervention. Plan intervention and treatment based on accessible measurement guidelines across a range of disorders Gain a deeper understanding of adaptive functioning specific to ADHD, autism spectrum disorders, disruptive behavior disorders, and genetic disorders Compare and contrast current measures to evaluate their strengths, weaknesses, and areas of overlap Quickly locate essential information with Rapid Reference and Caution boxes For individuals with neurodevelopmental disorders, adaptive behaviors are the keys to independence; without them, these individuals will perpetually struggle with achieving optimum independence without the basic skills needed to function at home, in school, and in the community. Assessment allows these skills to be factored in to treatment and intervention planning, and can help improve the outcomes of other intervention methods. Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders clarifies the assessment of these important behaviors, helping clinicians make more informed decisions around diagnosis, education, and treatment planning.
Book Synopsis Caregiver Burden and Relationship Satisfaction in ASD-NT Intimate Relationships by : Naomi Millar-Powell
Download or read book Caregiver Burden and Relationship Satisfaction in ASD-NT Intimate Relationships written by Naomi Millar-Powell and published by . This book was released on 2015 with total page 96 pages. Available in PDF, EPUB and Kindle. Book excerpt: Autism Spectrum Disorder (ASD) is a pervasive developmental disorder featuring difficulties with socio-emotional reciprocity, communication, and repetitive patterns of behaviour, as well as narrowed interests that hinder daily functioning (APA, 2013). However, the symptoms of ASD vary among individuals. Therefore, some people are unable to live independent lives (Hofvandet et al., 2009), while others are able to live independently and develop intimate relationships with others. These couplings, referred to as ASD-Neurotypical (NT) relationships, were the focus of this study. Adopting a mixed methods approach, quantitative and qualitative data regarding relationship satisfaction, positive communication patterns, and social support was collected across both groups (i.e., ASD, N=12, and NT, N=60). Caregiver burden was assessed among NT partners. The findings suggest that relationship satisfaction and perceptions of positive communications are lower among NT partners than those with ASD. Further, caregiver burden was comparatively high and negatively related to relationship satisfaction. Finally, a moderating pattern related to social support was suggested by the quantitative and supported by the qualitative findings. A framework informed by the a priori research questions was imposed on the qualitative data. The themes identified are as follows: caregiving, receiving care, social support and communication, as well as disconnection, grief and sorrow.
