The Child and Family Health Lab at Boston University has an active program of research focusing on disability and chronic health conditions. Our research considers the social and developmental context of illness and disability. This includes examining the effects of an illness or disability on other members of the family (e.g., parents / caregivers and siblings) and understanding how the family and cultural context influences the management or clinical presentation of the illness or disability across the lifespan. Several of our current research projects are summarized below.
Development of a Screening Module for Siblings of Children with Cancer
As an important but frequently overlooked part of family-centered care, siblings of children with cancer are both affected by cancer-related stressors and play an important role in supporting the family and the child with cancer during active cancer treatment. The current study is based on a prevention model. We aim to (1) develop a screening module for early identification of siblings who are at elevated risk for psychosocial difficulties and (2) examine the role of sibling-related risk factors on family adjustment to cancer. This research is expected to expand the concept of “family-centered care” to include siblings.
The Cultural Context of Caregiving for Children with Autism
Early autism diagnosis and treatment initiation are linked to better functional outcomes over the lifespan. However, Latino children are diagnosed with autism later than non-Latino white children and often receive fewer or lower-quality treatments. The reasons for these observed disparities are not well understood. Thus, this line of research aims to better understand the cultural context around having a young child with autism. Findings from this research are expected to inform sources of autism disparities and will help us to develop culturally-sensitive approaches to interventions for Latino children with autism and their families.
Siblings of Children with Autism: Cultural Influences on Psychosocial Functioning
Autism influences families’ day-to-day functioning and emotional climate, with effects extending to siblings. Family-oriented cultural values typical of Latino families may increase siblings’ likelihood of assuming a caregiving role for their brother or sister with autism, but the existing sibling literature does not consider cultural influences on sibling functioning. Therefore, the current research study examines the experiences of Latino and non-Latino white siblings of children with autism in order to characterize their understanding of autism, the impact of autism on family relationships, and their caregiving role throughout the lifespan.
Siblings FORWARD: Program Development for Autism Future Planning
Currently Recruiting (English- or Spanish-Speaking)
We are working with service providers, adult siblings, and adults with autism to develop a new program to help adult siblings become more involved with their families to plan for the future when they have a brother or sister with autism. For more information about this study, please visit our study’s site.
Examining Sleep Quality and Patterns in Children with Cancer
The goal of this study is to investigate sleep behaviors and sleep quality in children with cancer, as well as their association with parents’ sleep quality. Data will be collected to reflect various sleep hygiene components and parents’ perceptions of their own sleep and sleep in their children with cancer. Parents’ responses will be captured in a survey that includes validated sleep measures that enable quantitative analyses. We also aim to examine the effect of parental style. Findings from this study will help us identify potential barriers to good sleep quality and inform guidelines to create an environment that can provide optimal family-based intervention, which is often overlooked in the current medical research.
Interested in learning more?
If you are interested in hearing more about our research studies, please email firstname.lastname@example.org.