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Rubinstein-Taybi syndrome (RTS) is a rare genetic disorder. Family-centered care (FCC) is a healthcare delivery approach that aims to create an equal partnership between caregivers and providers. FCC has been shown to improve parental wellbeing, their knowledge of the condition and care, and improve their feelings of self-efficacy and personal control. The purpose of this study was to explore the healthcare experiences of family caregivers of children and adults with RTS to understand the issues they encounter when working with medical professionals and to examine their perspectives on how to improve FCC. Primary family caregivers of individuals with RTS took an online mixed-method survey that contained three primary components: a demographic survey, the Measures of Processes of Care-20 (MPOC-20) [a measure of the FCC an individual feels they receive], and a qualitative assessment of negative and positive interactions with medical professionals and priority areas for improvement. Qualitative data were analyzed using thematic analysis. Quantitative data were analyzed with descriptive statistics. An analysis of variance test was used to determine whether values statistically differed between different-age groups of individuals with RTS being cared for. Sixty-three caregivers completed the survey. The average score of the Providing General Information subscale of the MPOC-20 was 3.18, lower than that seen in other studies. The average scores of the other subscales of the MPOC-20 ranged from 4.60 to 5.02, comparable to other studies of caregivers of children with other medical conditions. All aspects of FCC were ranked as important by caregivers. There were no differences in MPOC-20 values between those caring for the individuals with RTS in different-age groups reviewed. In the qualitative responses, parents noted that experiences with medical professionals would be improved if healthcare providers actively provided FCC, collaborated with parents and other providers, respected caregivers' time and breadth of knowledge and lived experience, gave a more balanced description of the condition, showed greater respect toward their loved ones and included them in the conversation, and made an effort to learn about RTS. The changes that parents would like to see in their child's care were not specific to one discipline and could be implemented by all healthcare specialists.

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People with disabilities (PWD) are more likely to use tobacco and less likely to access tobacco cessation programs compared with people without disabilities. Living Independent From Tobacco (LIFT), an evidence-based intervention designed for PWD, was piloted with dyads of PWD (n = 5) and their caregivers (n = 7). As an important source of practical and social support for PWD, caregivers also impact health-related attitudes, knowledge, and behaviors of PWD. Caregivers who smoke may unwittingly interfere with cessation efforts of the people they support. We found that LIFT could be offered to dyads of PWD and their caregivers with fidelity. The intervention was associated with increased use of coping strategies and self-efficacy to reduce smoking. Tobacco use decreased at post-test (−34.94%), with further reduction 6-months after the intervention (−50.60%). Implications for offering inclusive health promotion interventions to both PWD and their caregivers are discussed.

High-stress events (e.g., natural disasters, political unrest, disease) significantly impact the lives of children and families. The Coronavirus Disease 2019 (COVID-19) is one event that has brought numerous hardships to families and children with developmental disabilities (DD), likely exacerbating already heightened levels of stress. For this study, we interviewed mothers living in the U.S. (N = 14) of 2- to 8-year-old children with DD about how COVID-19 has affected their family life. The interviews examined how the pandemic impacted (a) their child’s educational, therapeutic, and medical services, (b) their stress and resiliency, and (c) their parenting role as an advocate, educator, and interventionist. The results of our thematic analysis of the qualitative data highlight four domains with themes that describe families’ experiences as indicated by the mothers interviewed. Voices of families are essential in the delivery of effective and ethical early intervention for young children with disabilities. Based on the data from these interviews with mothers, suggestions for family-focused intervention to support families during high-stress events are discussed. As the long-term effects of the pandemic remain unknown, suggestions for future research to continue to examine the impact of high-stress experiences on young children with DD and their families are also presented.

People with disabilities have more health complications and higher healthcare utilization related to tobacco use than people without disabilities. Yet, they are less likely to use tobacco cessation resources. Important to meaningful and lasting health behavior change are relationships developed in the home, workplace, and community. Some people with disabilities rely on paid and unpaid caregivers. Just like people with disabilities, paid caregivers are more likely to use tobacco, creating a unique opportunity to target smoking cessation to people with disabilities and their caregivers. Living Independent From Tobacco (LIFT), an evidence-based tobacco cessation intervention, was implemented with dyads of people with disabilities (n = 5) and their caregivers (n = 7). Qualitative analyses revealed that participants valued the dyadic approach and the opportunity to learn coping skills to help with smoking cessation. Lessons for offering inclusive health promotion interventions to people with disabilities and their caregivers are discussed.