teaching parents reiki for their adolescents receiving palliative care

Conditions: Palliative Care; Chronic Disease

Summary: the proposed study addresses national institute of nursing research (ninr) priorities of advancing symptom science to "develop \[and\] test ... novel, scalable symptom management interventions, including complementary health approaches (chas), in real-world clinical settings to improve health outcomes and quality of life" and the science of compassion to improve palliative and end-of-life care through "developing, testing, and implementing personalized, culturally congruent, and evidence-based palliative and hospice interventions that best address the needs of underserved, disadvantaged, and diverse populations across the care continuum." a long-term bonus of teaching parents to deliver reiki is that reiki is highly scalable and once learned, costs nothing to use, an important potential overall cost savings over other chas.

despite advances in the assessment and treatment of symptoms, including pain in adolescents receiving palliative care, parents still report that their children suffer. advances in medical science and care have led to a growing number of children living with life-limiting chronic conditions. out of 83 million children under the age of 19,16 an estimated 600,000 to 1,600,00017 are living with life-threatening/life-limiting conditions and over 180,000 are considered "medically fragile." these children require intense medical and nursing care in the home and often experience lengthy, recurrent hospital stays, accounting for about 26% of hospital days and 41% of hospital charges. adolescents with life-threatening/life-limiting conditions, many of whom are developmentally delayed, experience many symptoms and have complex co-morbidities requiring medical management. many of these adolescents could benefit from complementary health approaches (chas) such as reiki, a gentle light touch biofield energy therapy. parents of adolescents receiving palliative care also experience high levels of stress. previous studies have shown that empowering parents in the care of their chronically ill child help parents better cope with challenges. some chas show promise for symptom management without side effects, such as sedation from additional medication, thereby permitting greater alertness and allowing more interaction with family and friends. preliminary evidence from the pis pilot study showed that professionally-delivered reiki is feasible for children and adolescents receiving palliative care at home. the majority of parents said they wished they could learn reiki so they might provide this relaxing therapy in the moment it was needed rather than waiting for the next professional session. one non-experimental program found that teaching parents reiki was feasible and acceptable in the hospital. parents who participated in two or more training sessions felt more confident providing reiki. during informal interviews, parents said they felt good at being an active participant in their child's care and that their child experienced increased comfort, relaxation, and decreased pain. parents of disabled adolescents receiving palliative care often suffer from high caregiver burden and chronic stress leading to co-morbidities and decreased qol. a cross-sectional survey conducted in europe examined stress in 818 parents caring for a child with cerebral palsy. results showed that 26% of mothers had very high stress. when the child had a communication or intellectual impairment or moderate-to-severe pain, parental stress was higher. one study examined psychological burden for 204 parents of children with serious chronic conditions. this study found that 75% of parents reported depression, and 67% had anxiety. the investigators are interested in exploring whether adding a skill (reiki) aimed at decreasing symptoms in the adolescent will result in a decrease in symptoms and chronic stress for the parent.

Eligibility criteria:
inclusion criteria: * participants will include adolescent-parent dyads. dyads will be included if the * adolescent: (1) is 10 to 19 years old, (2) is receiving palliative care at home, (3) understands english * parent: (1) provides care for the adolescent most days of the week and (2) is able to read and write english at the 6th grade level. exclusion criteria: * if (1) either the adolescent or the parent are taking or have taken corticosteroids within the last 30 days (affects the hair cortisol levels), or (2) either the adolescent or the parent has less than one inch of hair.

Keywords: complementary health approach parent adolescent