title: Families' Views of Pediatric Palliative Aquatics: A Qualitative Study.
abstract: Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The first-known pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children's experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke's method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n = 23) of children in a PPAP, an independent children's respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief.
authors.affiliation: Health Sciences Research Institute, University of California, Merced, California. Electronic address: egaab@ucmerced.edu.
authors.forename: Erin
authors.initials: E
authors.lastname: Gaab
authors.affiliation: UCDavis Children's Hospital, Sacramento, California.
authors.forename: David M
authors.initials: DM
authors.lastname: Steinhorn
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002140:California; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D005190:Family; D005260:Female; D017144:Focus Groups; D006801:Humans; D006875:Hydrotherapy; D008297:Male; D059408:Pain Management; D010166:Palliative Care; D010372:Pediatrics; D036301:Qualitative Research; D012063:Relaxation; D013727:Terminal Care; D055815:Young Adult