| The problem of inadequate access to end-of-life care services for children diagnosed with a serious illness was explored. This interdisciplinary study integrates national pediatric initiatives that call for the provision of concurrent palliative and curative care, with the region's needs, as informed by this study's survey results. The objectives were to characterize what fosters equitable access to services, and to understand providers' conceptualizations of end-of-life care of children in order to address service-gaps. The study is timely, as more than 500 low-income families in the Fresno-area who could benefit from a 2011 Medi-Cal program face a community service-capacity of 25 families. The 148 online survey respondents were experienced social workers, nurses, and allied health professionals who encounter children with a life-limiting illness. Practice initiatives specific to children were weakly reflected in providers' perspectives, but were more evident in narrative responses. A majority showed use of adult care models when rating the timing and importance of services through a course of illness. Clinical providers' responses were significantly better aligned with best-practices compared to medical or allied health professionals. Narrative core themes included: provider education, timely referral, diverse staff, and inter-organizational collaboration. Next steps needed in research and community response were discussed. The implications for social workers to serve as a multi-system communication bridge were discussed from the profession's core values of social justice, an empowerment perspective and cultural competency. |
