P3B037: Child Life Hospice and Palliative Needs Assessment Conducted to Guide Education and Programmatic Growth of Emerging Collaborative: Child Life Hospice and Palliative Care Network

Background: As educated and clinically trained healthcare providers, Certified Child Life Specialists (CCLS) improve quality of care with their knowledge of child development and family systems. CCLS focus on reducing the negative impact of stressful or traumatic life events and situations that affect the development, health and well-being of infants, children, youth and families. Although this role initially emerged in the 1960s and has grown exponentially in the last two decades, little research has been conducted on CCLS working in hospice and palliative care. A professional group of CCLS with experience in palliative and hospice care initiated an informal, online network for CCLS collaboration that provided fellowship, education and case review opportunities. This group along with partners from The HAP Foundation and University of Tennessee, Knoxville conducted an international survey of CCLS professionals that gathered information on demographics, work experience, work environment, and professional needs.

Methods: Study inclusion criteria were employment within a health care setting, over 18 years of age, able to read English and using the job title of or working in the capacity of a CCLS. Data was collected using an instrument designed by the research team. Recruitment was conducted through email messaging to CCLS groups, including pediatric palliative/hospice specialist interest groups. Data analysis included descriptive statistics.

Results: Among the 191 CCLS survey respondents more than half (57.0%) had under 12 years CCLS experience. A majority were under 40yrs of age (62.8%), female (96.3%) and Caucasian (87.4%). Over 60% of respondents had a masters-level education. CCLS had a variety of additional job roles including event planning (38.7%) and bereavement programming (47.1%). The positions were commonly a line item on the general operating budget (37.7%). They served a wide age range of clients: perinatal (33.5%), infants/toddlers (73.8%), school-aged children (74.9%), adolescents/young adults (75.4%), adults with intellectual disabilities/developmental disabilities (32.5%), and adult caregivers of children (60.2%). Most respondents worked in pediatric programs (62.3%), followed by pediatric/adult (13.6%) and adult (8.4%) programs. A majority worked in hospitals (80.1%), with overlap between inpatient and outpatient/clinic settings (29.3%), while others worked within hospice organizations (32.5%). The highest discipline specific training needs reported from this group included hospice and palliative care education (67.0%) and grief-informed care training (52.3%). Qualitative responses addressed challenges in the profession. Emerging issues among CCLS included staffing, funding, selfcare, community and healthcare provider misunderstanding regarding the capacity/role of CCLS, and a desire to elevate the professionality of the field.

Conclusion: This study is one of the first to empirically examine the CCLS profession. The findings suggest that CCLS are a well-trained and relatively homogenous group supporting children across the pediatric lifespan. Their occupational needs focused on professional identification among other healthcare providers and team members.