Community-Based Palliative Care for Patients with Cerebral Palsy and Intellectual Developmental Disability: A Mixed-Methods Analysis of Current Practices

Individuals with Cerebral Palsy (CP) and/or Intellectual and Developmental Disabilities (IDD) face difficulties accessing equitable palliative care. This study uses a mixed methods approach to assess the knowledge and comfort of community-based healthcare workers in providing palliative care for this patient population. Quantitative data from 54 palliative care practitioners was obtained through an online survey and qualitative analysis was obtained through a subsequent semi-structured interview with a focus group of four providers. Findings suggest providers were most confident in managing physical symptoms (66.7% dyspnea, 68.6% pressure ulcers, 72.7% restlessness) and having goals of care discussions (89.5%), but least confident in managing emotional pain (41.1%), grief (28.6%), and prognostication (34.6%). Similar themes were identified in the focus group, with an emphasis on the importance of patient autonomy and communication, as well as the challenge of facing personal and systemic biases. Importantly, both the survey and focus group echoed the need for more training that specifically addresses the needs of this population. Results suggest that challenges and discomfort in providing palliative care to patients with CP and IDD continue to exist and further training that incorporates the meaningful perspectives of these patients is needed.