Assessing the impact of grief on quality of life, work productivity, and health outcomes for parents bereaved from SMA: A study protocol.

BACKGROUND: U.S. cost-effectiveness recommendations suggest that analyses should include all costs and effects relevant to the decision problem [1]. However, in many diseases, including spinal muscular atrophy (SMA), few studies have evaluated bereaved family outcomes after a child has died, neglecting potential impacts on their health-related quality of life (HRQoL), work productivity, and mental health. Additionally, grief-related outcomes are rarely included in economic evaluations. This manuscript outlines the protocol of a study that will estimate the HRQoL, work functioning, and mental health of bereaved parents of children with SMA type 1 to determine how outcomes vary based on parent's sex and the time since a child's death. METHODS: This study will involve two phases. In Phase 1, we will conduct a literature review to identify prior research that has measured how parental grief impacts HRQoL, work productivity, and mental health. We will also interview four bereaved parents of children with SMA type 1, stratified by parent sex and time since their child's death, and analyze findings using a thematic analysis. In Phase 2, we will develop a survey draft based on Phase 1 findings. Parents bereaved from SMA type 1 will review our survey draft and we will revise the survey based on their feedback. We will send a cross-sectional survey to approximately 880 parents bereaved from SMA type 1. We will analyze findings from the survey to investigate whether the severity of grief symptoms is correlated with HRQoL, productivity, depression and anxiety symptom severity. We will also evaluate whether the mean scores of grief and each of the outcomes vary significantly when stratified by parent sex and the time since the child's death. DISCUSSION: Our results will provide preliminary information on how parental grief can impact HRQoL, productivity, and mental health outcomes over time. Increasing the availability of family outcomes data will potentially assist organizations performing health economic evaluations, such as the Institute of Clinical and Economic Review (ICER) in the U.S. This research will also help to inform the development of future economic guidelines on this topic.

Exploring health behaviors and the role of pet dogs in households with autistic children: the DANE study.

Introduction: Autism spectrum disorder (ASD) often presents a unique set of risk factors that impact healthy eating and physical activity. Animal-assisted interventions (AAI) are a promising approach for autistic children. There is growing evidence for the positive impact of AAIs on self-regulation, which is necessary for initiating and maintaining behavioral changes. Pet dogs offer several potential advantages as a vehicle for an AAI focused on health behaviors. However, little is known about the experiences of autistic children and their families with respect to dog ownership and the mechanisms through which such an AAI might operate. Methods: We conducted interviews with ten parent-child dyads to explore the role of pet dogs in the lives and lifestyle habits of families with an autistic child. Interview guides were designed to explore the relationship between the autistic child and the pet dog and the role of the dog in family life; attitudes and practices related to physical activity and nutrition; and thoughts about intervention strategies. We used a directed qualitative content analysis approach for analysis. Results: Themes indicate a strong bond between the child and the dog, the child's enjoyment in caring for their dog, and successful integration of dogs within family routines. In contrast, minor themes emerged around the challenges that owning a pet dog posed for families with an autistic child. In terms of nutrition and physical activity, a major theme among children was that healthy eating and exercise were important for both them and their dogs. However, minor themes suggest challenges with healthy eating and exercise and room for improvement for these behaviors. Parents held favorable views toward an intervention that would incorporate the family dog to teach children about nutrition and physical activity, although they expressed some concerns about feasibility. Discussion: This exploratory work suggests that AAIs to improve nutrition and physical activity could build on the strong bond that children have with their pet dogs, but should consider the specific needs of each family, including the needs of the pet dog.

Developmental Behavioral Pediatrician Perspectives on Decision-Making in Early Treatment Planning for Children with Autism Spectrum Disorder.

OBJECTIVE: Providers of children with autism spectrum disorder (hereafter "autism") report higher levels of shared decision-making during initial diagnostic and treatment planning visits than observed. The goal of this study was to qualitatively explore this discrepancy by investigating provider perceptions of the parent-provider decision-making process in early treatment planning and the role for parents in this process. METHODS: We conducted semistructured qualitative interviews with developmental behavioral pediatricians (DBPs; n = 15) to investigate how they approach early treatment planning with parents. We analyzed participant characteristics using descriptive statistics. Interviews were audio-recorded, transcribed, and independently coded by 2 researchers until consensus was reached. Analyses were conducted using a modified grounded theory framework. RESULTS: DBPs reported that their primary role during early treatment planning was to provide diagnostic clarification and that parents' primary role was to learn as much as they can about autism. Most DBPs wanted treatment planning to be collaborative, and perceived that parents had the same preference but might not have the knowledge or skills to effectively participate. DBPs identified additional barriers that influence the extent to which they engage parents in the collaborative decision-making and provided recommendations for enhancing the process. CONCLUSION: DBPs are proponents of collaborative treatment planning between parents and providers; however, there are many obstacles that prevent this. Strategies such as decision tools or aids and larger systemic reforms are necessary to support DBPs and parents in this process.

A Stakeholder-Engaged Approach to Development of an Animal-Assisted Intervention for Obesity Prevention Among Youth With Autism Spectrum Disorder and Their Pet Dogs.

Stakeholder involvement in research has been demonstrated to increase the effectiveness, validity, and quality of a study. This paper describes the engagement of a stakeholder panel in the development and implementation of an animal-assisted intervention (AAI) assessment and program for children diagnosed with Autism Spectrum Disorder (ASD). Canines for Autism Activity and Nutrition (CAAN) aims to promote physical activity and wellness among children diagnosed with ASD by integrating activities with their pet dog during the child's ongoing Applied Behavioral Analysis (ABA) in-home therapy sessions. Feedback from stakeholders guided program development at each stage of the research process, including this publication. Utilizing a stakeholder-informed approach was essential for the development of assessment tools, program materials, and program design. Methods that may assist others to effectively partner with stakeholders to implement an AAI among children diagnosed with ASD or related disorders are described.

Effects of a teacher training program to promote physically active play among preschoolers with autism spectrum disorders.

Wellness Enhancing Physical Activity for Young Children (WE PLAY) is an intervention intended to promote physical activity (PA) among typically-developing preschool children in child care settings. It was adapted for use by teachers who educate children with Autism Spectrum Disorders (ASD). This study used a multiple baseline design across participants to evaluate the impact of WE PLAY-Autism on teachers' PA facilitating behaviors and on the PA levels of children with ASD. Visual analysis and effect size estimates indicated that two of the three teachers increased their PA facilitating behavior, although this was insufficient to demonstrate a functional relation. Children's (n = 5) PA was measured daily during school hours using accelerometry. Visual analysis, which was further supported by effect size calculations, indicated higher average levels of moderate-to-vigorous PA (MVPA) among preschoolers with ASD in the intervention phase (Tau-UA vs. B = 0.53, p < .001, Hedges' g = 0.99, 95% CI [0.56, 1.43]) and post-training phase (Tau-UA vs. B = 0.55, p < .001, Hedges' g = 1.17, 95% CI [0.73, 1.60]) in comparison to the baseline phase. WE PLAY-Autism is an intervention deserving of further investigation given its meaningful impact on the MVPA of preschoolers with ASD paired with its potential for broad implementation in preschools.

Shared Decision-Making During Initial Diagnostic and Treatment Planning Visits for Children with Autism Spectrum Disorder.

OBJECTIVE: Although shared decision-making (SDM) can improve patient engagement, adherence, and outcomes, evidence on the use of SDM within the context of autism spectrum disorder (ASD) initial diagnosis and treatment planning remains limited. The goal of this study was to objectively assess the occurrence of SDM in these visits and to compare this assessment with parent and provider perceptions of SDM in the same encounter. METHODS: After audio-recording and transcribing initial clinical visits between parents (n = 22) and developmental behavioral pediatricians (n = 6) discussing the diagnosis of ASD and treatment options, we used the OPTION5 Item scale to assess the occurrence of SDM. Afterward, parents and providers completed the OPTION5 Item, and parents also participated in a semistructured qualitative interview. Analysis consisted of descriptive statistics for OPTION5 Item scores and a modified grounded theory framework for interviews. RESULTS: Low levels of SDM were observed, with 41% of visits having no elements of SDM. On average, visits scored 1.1 of a possible 20 points on the OPTION5 Item scale for SDM. By contrast, parents and providers indicated on the OPTION5 Item scale that providers made a "moderate" to "skilled" effort to engage parents in SDM. Qualitative interviews with parents were consistent with their OPTION5 Item ratings. CONCLUSION: The level of SDM determined by parent and provider reports was higher than the level of SDM determined by objective observation using a standard validated rating method. The findings reinforce the need for further research into barriers and facilitators of SDM methods and outcomes within ASD.

Use of Telehealth in Fellowship-Affiliated Developmental Behavioral Pediatric Practices During the COVID-19 Pandemic.

OBJECTIVE: This study aims to describe the use of telehealth in developmental behavioral pediatric (DBP) fellowship-affiliated practices during the coronavirus disease 2019 (COVID-19) global pandemic. METHODS: An electronic survey was disseminated to all DBP fellowship-associated practice locations to determine the use of telehealth in DBP care provision, before and since the beginning of the COVID-19 pandemic. We analyzed responses using descriptive statistics. RESULTS: A total of 35 of 42 eligible practice sites responded (83% response rate). Most sites (51.4%) reported using telehealth less than once per month before the COVID-19 pandemic. Since the onset of COVID-19, 100% of programs reported conducting video-based telehealth visits multiple days per week. Most sites reported conducting evaluations and follow-up visits for attention-deficit/hyperactivity disorder, autism spectrum disorder, behavioral concerns, developmental delay, genetic disorders, and learning disability. Most sites were able to continue medication management by telehealth (>88%), offer interpreter services for families with limited English proficiency participating in telehealth visits (>90%), and incorporate trainees and interdisciplinary team members in telehealth visits (>90%). Greater variability was observed in sites' ability to collect telehealth practice evaluation measures. CONCLUSION: Most sites are providing evaluations and ongoing care for DBP conditions through telehealth. The rapid adoption of telehealth can have ramifications for the way that DBP care is delivered in the future; therefore, it is imperative to understand current practice patterns and variations to determine the best use of telehealth.

Factors Associated with Resilience in Families of Children with Autism Spectrum Disorder.

OBJECTIVES: Families of children with autism spectrum disorder (ASD) report high levels of stress and poor psychological functioning. Resilience serves to buffer these challenges. Little is known about the factors associated with resilience in these families. METHODS: Data from the National Survey of Children's Health (NSCH) 2016 were used to investigate independent child, parent, and health care factors associated with resilience in families of children with ASD. We used the NSCH's family resilience composite derived from 4 survey questions focused on (1) communication, (2) working together to solve problems, (3) drawing on strengths, and (4) staying hopeful during difficult times. We defined family resilience as high or low based on the number of questions answered "all of the time" or "most of the time" versus "some of the time" or "none," respectively. Using survey weights, univariate and multivariate logistic regression analyses identified associations of child, parent, and health care factors with low family resilience. RESULTS: We analyzed data representing 1151 children with ASD. Low resilience was reported in 32% of families. Low family resilience was significantly associated with parent factors such as not having someone to turn to for support, cutting work hours, and feeling "child hard to care for"; child ASD-related factors such as moderate ASD severity; and health care factors such as lack of satisfaction in communications with providers. CONCLUSION: The findings highlight specific vulnerabilities in families of children with ASD that are associated with low family resilience. Intervention approaches that have the ability to improve overall family resilience should be carefully considered.

Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population.

OBJECTIVE: Minority families experience disparities in the diagnosis and management of autism spectrum disorder (hereafter "autism"). To date, the experiences of Chinese immigrant families in the United States have not been explored. Utilizing parent and provider perspectives, this research sought to identify barriers and facilitators to the diagnosis and management of autism among Chinese immigrant children. METHODS: We conducted semistructured qualitative interviews with 16 parents of Chinese children diagnosed with autism and 16 providers who assist in the diagnosis and management of autism. Participant characteristics were analyzed utilizing descriptive statistics. Interviews were audiorecorded, transcribed, translated, and independently coded by 2 researchers until consensus was reached. Coded data were analyzed using a modified grounded therapy approach. RESULTS: Parents and providers both identified cultural beliefs as an influence on the understanding and acceptance of autism as a diagnosis. There was a high degree of alignment in themes related to barriers to health care access and parent-provider communication. Recommendations to improve the system of care include (1) supporting communication, (2) cultural sensitivity, and (3) care coordination programming. CONCLUSION: Findings reinforce that diagnosis and treatment of autism should take into account culturally specific beliefs about child developmental norms and should address systems-, provider-, and family-level barriers.

Family System Interventions for Families of Children with Autism Spectrum Disorder.

The increasing prevalence of autism spectrum disorder (ASD), the severity of impairment, and its impact on systems are a source of ever-growing concern. This article (1) describes briefly the spectrum of ASD and its treatments; (2) discusses the impact that ASD has on the individual, family, and external environment; and (3) discusses the application of family therapy principles in order to meet the needs of children and families affected by ASD. Illustrative case examples are presented.

A multi-state study on mental health evaluation for children entering foster care.

When compared with the general United States child population, children entering foster care have elevated rates of mental health problems. This study examines: (1) state approaches to mental health evaluations for children entering foster care for the first time, (2) the consistency of these approaches with professional guidelines, and (3) whether the specific instruments endorsed are supported by available evidence. Semi-structured qualitative interviews and a document review of available protocols/policies were conducted for 47 states and the District of Columbia. All states endorsed mental health evaluations; variation existed between states in approach, timeframe, administrator, and specific instruments endorsed.

Social Validity Assessment of Training Methods to Improve Treatment Integrity of Special Education Service Providers.

We report the results of a social validity assessment that was administered to special education service providers (N = 44) to document the acceptability and effectiveness ratings of several treatment integrity training methods. The participants judged performance feedback as the most likely method to improve their treatment integrity, followed by avoidance (negative reinforcement) of supervision meetings, online training, and financial incentive. Performance feedback was also rank-ordered as most effective among the four training methods. We discuss the merits of social validity assessment in designing programs for enhancing treatment integrity among practitioners within educational and clinical settings.

Trial of the university assistance program for alcohol use among mandated students.

OBJECTIVE: The aim of this study was to investigate the effectiveness of a brief intervention for mandated students in the context of the University Assistance Program, a Student Assistance Program developed and modeled after workplace Employee Assistance Programs. METHOD: Participants were 265 (196 males and 69 females) judicially mandated college students enrolled in a large, urban university in the northeast United States. All participants were sanctioned by the university's judicial office for an alcohol- or drug-related violation. Participants were randomized to one of two intervention conditions (the University Assistance Program or services as usual) and were assessed at baseline and 3 and 6 months after intervention. RESULTS: Growth curve analyses showed that, relative to services as usual, the University Assistance Program was more efficacious in reducing past-90-day weekday alcohol consumption and the number of alcohol-related consequences while increasing past-90-day use of protective behaviors and coping skills. No significant differences in growth trajectories were found between the two intervention conditions on past-90-day blood alcohol concentration, total alcohol consumption, or weekend consumption. CONCLUSIONS: The University Assistance Program may have a possible advantage over services as usual for mandated students.