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.

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.

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.