Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity

How do parents’ lived caregiving experiences shape their orientations toward life-sustaining treatment during episodes of critical deterioration in children with medical complexity?In this qualitative study using hermeneutic phenomenologic analysis of interviews with 13 parents of children with medical complexity, 4 interpretive themes (endurance, contradiction, being, and cohesion) emerged. Parents described experiential, value-based thresholds for acceptable interventions grounded in comfort, dignity, relational presence, and accumulated caregiving knowledge.Parents’ orientations toward life-sustaining treatment appeared to be shaped less by prognosis and more by their lived experience of caregiving and meanings of a good life, underscoring the importance of early, iterative, values-based pediatric advance care planning conversations.

Corresponding Author: Cheng-Pei Lin, PhD, Institute of Community Health Care, College of Nursing, National Yang Ming Chiao Tung University, Taipei, No. 155, Sec. 2, Linong St, Beitou District, Taipei City 112, Taiwan (ROC) (cheng-pei.lin@nycu.edu.tw).

Link to the article in your story

We encourage you to link out to this article in your story using the link below. It includes an access token that will give free access to the article for your readers up to one year after publication. (The link will be live after the article publishes and embargo is lifted.)

Please see the article for additional information, including full author list, author contributions and affiliations, conflict of interest and financial disclosures, and funding and support.

Need more information? Contact us.