Caregiver support, burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study.

BACKGROUND: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. METHODS: A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives. RESULTS: Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the 'learning to plan' stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001). CONCLUSION: Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.

Updating the healthcare maintenance visit for children with medical complexity: applying lessons learned from the coronavirus disease 2019 pandemic.

PURPOSE OF REVIEW: Coronavirus disease 2019 (COVID-19) has exposed the vulnerabilities of children with medical complexity (CMC). This article uniquely describes how pediatric providers in various clinical settings can adapt routine healthcare maintenance visits to meet the needs of CMC in the era of COVID-19. We also discuss unique visit components important to address when providing primary care to CMC, including caregiver support, disaster preparedness, long-term care planning, and telemedicine. RECENT FINDINGS: Although some children may be less severely affected by COVID-19 than adults, current literature suggests that CMC may be at higher risk for severe disease. In addition, the COVID-19 pandemic has highlighted the value in consistent, primary care for CMC. Children, especially those with medical complexity, are at risk for interruptions in care, delayed vaccinations, increasing caregiver burden, and barriers to in-person care. SUMMARY: This article summarizes the components of the healthcare maintenance visit for CMC, providing salient recommendations on how pediatric providers can adapt their approach to the primary care of CMC in the era of COVID-19.