Providing Pediatric Palliative Care in Non-Urban Areas of Illinois: Challenges Identified and Recommendations for Process Improvement (TH320D)

Abstract

•Identify 3 barriers to the provision of care in rural areas for children with life-limiting illnesses and their families.•Describe 3 approaches to improving the provisions of care in rural areas for children with life-limiting illnesses and their families.•Describe 2 potential mechanisms for supporting the existing pediatric palliative care resources in rural communities. The absence of formal data about pediatric palliative care in non-urban areas has hindered development of appropriate supportive resources to improve access to services. To identify pediatric palliative, hospice and bereavement resources, care gaps, and barriers to service provision in four key non-urban regions of Illinois. We conducted semi-structured focus groups or interviews with parents and healthcare providers from four Illinois non-urban population hubs. Regional champions (e.g., hospice administrator, Social Worker developing a hospital-based pediatric supportive care program) led recruitment. We analyzed the data using a grounded theory approach focusing on issues relevant to non-urban communities. We conducted 12 focus groups/interviews with 8 bereaved parents, 4 non-bereaved parents, and 18 healthcare professionals (6 nurses, 2 doctors, 4 Social Workers, 6 “other”) representing hospital, palliative/hospice care, homecare, or family support organizations. While some participants praised the current services, expressed concerns predominated. Themes identified included: attitudes about pediatric palliative/hospice care and local resources; inadequate care coordination; limited skill/comfort of local healthcare professionals; limited resources for healthcare team members and families; inadequate information about existing resources; need to travel to obtain care. Areas for process improvement focused on enhancing existing resources through better access, utilization and quality, and improving care coordination. Approaches proposed included educational efforts for families and professionals, introducing local and distant resource experts for families and professionals (e.g. navigators, mentors), utilizing technology (e.g. telehealth), providing more symptom management and diagnostic testing locally, and improving funding. Improving pediatric palliative/hospice care delivery in non-urban areas of Illinois will require efforts that match people with existing services and maximize resource utilization and quality.