Quality domains in home-based pediatric hospice and palliative care: adolescent and young adult perspectives.

BACKGROUND

Current United States palliative care practice guidelines are intended to cover care across all age groups. Previous research with pediatric providers and caregivers concluded that pediatric hospice and palliative care have unique attributes. Not known is how adolescent hospice and palliative care patients understand quality palliative care. The purpose of this study was to characterize and define quality of care domains as described by adolescent and young adult patients receiving home-based hospice and palliative care.

METHODS

Semi-structured interviews with 10-26 year-olds who received home-based hospice and/or palliative care visits in the prior three years at six diverse sites in the United States. Data were analyzed using Krippendorff's semantic content analysis methodology.

RESULTS

There were 32 participants (63% female) who had a median(range) age of 17.5 (10-26) years old, and 69% (n = 22) were White. The domains with the highest number of themes were Structure and Processes of Care and Compassionate Care.

CONCLUSIONS

The results address an important gap by including adolescent/young adult patients' voices regarding delivery of home-based hospice and palliative care. Clinical implications include prioritizing and making time to build trusting relationships directly with the AYA, empowering them to participate in their care to the extent appropriate and prepare for transition to adult care when needed, providing support for family members, and training for all providers in generalist spiritual care.