Limitations
This study is limited by several factors. Participation by caregivers was entirely voluntary; the study was constrained by the participants' openness and ability to talk about experiences. This study's focus may have elicited conversations within families relating to death before caregivers were interviewed. Some caregivers may not wish to answer the interview questions for personal, cultural, or religious reasons. Two primary caregivers who were referred by the PPC team but chose not to participate acknowledged a "need for the research" and apologized. Although this study provides insight into the minds of the primary caregivers of terminally ill children, the impact of their decisions on their children remains unknown. Direct, qualitative data from children with terminal illness would complement this research.