Research

The Child and Family Health Lab conducts research that considers the important role of social ecological (e.g., family, culture, healthcare system) and developmental factors when an individual has a chronic medical illness or 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. Below, please find descriptions of several of our current research projects.

 

Developing 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 affected by cancer-related stressors. Siblings are at-risk for acute and long-term psychosocial difficulties, such as elevated posttraumatic stress and disruptions in school, family, and social functioning. Many siblings also show resilience in the face of cancer. Despite this variability in sibling adjustment, there are no empirically validated screeners for sibling distress. Thus, we have recently developed English and Spanish versions of a screening module for early identification of siblings who are at elevated risk for psychosocial difficulties. We are currently collecting data to validate the screener and identify ways to incorporate it into clinical care.

 

Creating a Blueprint for Sibling Services

Siblings of children with cancer have increased psychosocial risk (Long et al., 2018). Although sibling psychosocial care is a standard of care in pediatric oncology (Gerhardt et al., 2015), the Sibling Standard is among those least likely to be implemented (Scialla et al., 2018; Jones et al., 2018). We are conducting a study to better understand the landscape of psychosocial services for siblings of children with cancer. This includes characterizing current screening and intervention practices, querying perceived barriers and facilitators of sibling psychosocial support, and delineating methods to overcome implementation barriers. Characterization of the depth, breadth, and barriers to sibling psychosocial care will help us to identify targetable service gaps, inform dissemination of successful sibling programs, and ensure wider-spread implementation of the Sibling Standard. Improving sibling support will strengthen family-centered care and foster healthier trajectories of siblings’ psychosocial functioning across the lifespan.

 

Examining Sleep Quality and Patterns in Children with Cancer

Children with cancer frequently report sleep disturbances during and after active treatment, and these disturbances may negatively affect their own and their family members’ emotional and neurocognitive functioning and quality of life. The identification of modifiable influences on children’s sleep in the context of childhood cancer may inform clinical recommendations. This mixed-methods study is investigating sleep disturbances in children with cancer, as well as sleep hygiene and parental behaviors related to their children’s sleep at each stage of cancer treatment (active treatment, maintenance therapy, and off-treatment).

 

Understanding and Addressing Social Determinants of Health in Pediatric Sickle Cell Disease

Many children with sickle cell anemia live in impoverished households in which parents often face difficulties related to social determinants of health (SDOH), such as food or housing insecurity. Yet, we know little about the mechanisms through which SDOH may affect medical outcomes in these children or about how to adequately address unmet needs related to SDOH. Thus, this mixed-methods study aims to understand how SDOH impacts the ability of low-income families of children with sickle cell anemia to manage this life-threatening disease, and apply these findings to adapt and implement a SDOH screening and referral system in order to promote health equity in this often underserved population.

 

Identifying the Implications of False Positive Autism Screening

In 2016, the US Preventative Services Task Force (USPSTF) concluded that there is insufficient evidence to support universal screening for autism spectrum disorder (ASD) in primary care. For example, there is a lack of information about the impact of false positive screening outcomes on families, as well as how sociodemographic characteristics are related to families’ engagement and experiences with the screening, diagnosis, and treatment process. Thus, this project is investigating the potential benefits (e.g. frequency of alternate diagnoses, access to services) and harms (e.g. parental distress) in families of children who initially screened positively for autism but who did not receive an autism diagnosis after a full diagnostic evaluation.

 

Considering the Cultural and Family Context of Autism in Childhood

Cultural factors are related to families’ experiences related to autism diagnosis, treatment involvement, and day-to-day functioning. For example, racial/ethnic minority children are diagnosed with autism later than non-Latino white children and often receive fewer or lower-quality treatments, but the reasons for these observed disparities are not fully understood. There is also data to suggest to cultural factors may influence how other family members (e.g., siblings and parents) respond to the unique needs of having a child/sibling with autism. Thus, this line of research aims to better understand the cultural and family context around having a young child with autism. Findings are expected to inform culturally-sensitive approaches to working with socio-culturally diverse children on the autism spectrum and their families.

 

Understanding Mechanisms of Disparities over the Transition to Adulthood among Youth on the Autism Spectrum

Race-, ethnicity-, and income-based disparities have been documented among youth on the autism spectrum who are transitioning to adulthood (Eilenberg et al., in press). Low-income and racial/ethnic minority youth on the autism spectrum are less likely to participate in transition planning meetings and to engage in post-secondary education, employment, or social activities than their White and higher income peers on the autism spectrum. However, mechanisms underlying these disparities have received little research attention. This project aims to better understand the factors that contribute to these disparities.

 

Siblings FORWARD: Developing a Program to Engage Adult Siblings in Planning for the Future with their Brother or Sister on the Autism Spectrum

Currently Recruiting (English- or Spanish-Speaking)

There is a growing population of individuals on the autism spectrum who are aging into adulthood, and the current service delivery system is not equipped to meet their needs. Unmet needs are even greater for those who identify as racial or ethnic minorities. The responsibility of coordinating care frequently falls on family members. Although siblings often provide support to their brother or sister on the autism spectrum when parents are no longer able to do so (e.g., due to illness or death), siblings are seldom involved in autism-related research or support services. This study addresses this gap by developing a family-based program to engage siblings of adults on the autism spectrum in future planning before the crisis of a caregiving transition. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) is a community-based, individualized telehealth program that targets common barriers to sibling involvement in family future planning. It is being developed in collaboration with English- and Spanish-speaking families of adults on the autism spectrum and their service providers. For more information about this study, please visit our study’s site.

Recruitment Flyer for Siblings and Service Providers

Recruitment Flyer for Adults with Autism

 


Interested in learning more?

If you are interested in hearing more about our research studies, please email childfam@bu.edu.