Primary caregivers’ experiences living with children involved in pediatric palliative care in New Zealand

Abstract

Pediatric palliative care (PPC) is a family-centered method of caring for young patients with life-limiting illnesses. A qualitative study of caregivers' communication with their children aged 3.5 years to 18 years was conducted using semi-structured, in-depth interviews. Nineteen caregivers living in the Auckland area participated. Interviews focused on the topic of whether to talk with children about their (and their brothers or sisters) illness and possible impending death. Although this research set out to explore how primary caregivers communicate with their children about their impending mortality, many other experiences arose from the interviews. Topics which arose from those living with their children who have life-limiting illnesses were transcribed and analyzed here. Caregivers face a number of common challenges and concerns during and after caring for a child receiving PPC which are related to much more than their children's impending deaths. Inductive thematic analysis revealed several other themes which arose spontaneously from the data. These themes related to the assistance of professional organizations and medics, the support of family members, the Internet as a research tool, regrets, and discrimination on the basis of disability. Health professionals and people who support families undergoing the process of caring for a child receiving PPC may assist caregivers by addressing the mentioned concerns.

Keywords:

• pediatric palliative care
• pediatric communication issues
• caregiver issues
• pediatric psychiatric/psychosocial issues
• social work issues

Acknowledgments

We thank the brave caregivers for participating with compassion and interest and the advisory support of the Starship PPC Team.