The Rare Life: Examining Parents’ Grief, Barriers, and Facilitators Associated with Caring for Medically Complex Children

ABSTRACT

Caring for medically complex children (MCC) involves physical, financial, and emotional challenges for parents, who are often grieving the loss of their expectations or vision for a healthy child. We applied Miles’ parental grief model to explore the experiences of 25 parent-caregivers who were interviewed for The Rare Life, a podcast in which a mother of a MCC interviews parents about their experiences caring for their MCC. We characterize parent-caregivers’ experiences of shock; their intense grief, including yearning, helplessness, physical symptoms, behavioral changes, and a search for meaning; and the reorganization that helped them accept their parenting reality. In addition, we identified communicative barriers and facilitators that hindered and supported parent-caregivers’ movement through the phases of grief.

Acknowledgement

We would like to thank Madeline Cheney, the host of The Rare Life, for creating this podcast to help parents of MCC connect with each other. We would also like to thank the podcast participants for generously sharing their stories.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. After our initial research meeting, we reached out to The Rare Life podcast host, Madeline Cheney, through a direct message on Instagram. In our message, we explained that we wanted to review and code her interview transcripts to write an academic manuscript on parent-caregivers’ experiences. We invited her to be involved in the process. She responded: “Ooh that’s so exciting! Wow! What an honor! I would just love to read it once it’s completed! Thank you for telling me!” We considered her response to be supportive and continued with our work.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.