Diverging Needs for Family Leave: A Qualitative Study of Leave-Taking among Parents of Children with Special Health Care Needs

Background: Family medical leave policies aim to help resolve conflicts between employees' work obligations and their family members' healthcare needs. In 2004, California was the first state to implement the Paid Family Leave Insurance (PFLI) program, which guarantees up to 6 weeks of paid family leave for most employees. Since implementation, however, there has been little awareness or use of PFLI among a large and vulnerable group of employees – parents of children with special health care needs (CSHCN).

Methods: This qualitative study uses semi-structured interviews to investigate parents' decision-making processes regarding leave-taking to care for a seriously ill child. Between February and June 2008, twenty parents of recently hospitalized CSHCN and a comparison group of twenty parents of newborns were recruited in Los Angeles to participate in a telephone interview.

Results: Many parents of CSHCN and parents of newborns were not fully aware of family leave options; those who were aware still faced multiple barriers to leave-taking, including inadequate employer understanding of leave options, poor communication with employers and state agencies, and bureaucratic obstacles. Parents of CSHCN generally reported less knowledge and greater barriers than parents of newborns. For many parents of CSHCN, the relative unexpectedness of illness-related hospitalizations allowed them neither the time nor the energy required to navigate the system.

Conclusions: As paid family leave policies become more widespread, successful implementation will depend largely on addressing the informational and support needs of vulnerable populations, especially in stressful situations when access to time and resources may be most limited.