Jackelyn Y Boyden1, Mary Ersek2, Janet A Deatrick3, Kimberley Widger4, Gwenn LaRagione5, Blyth Lord6, Chris Feudtner7. 1. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. Electronic address: jboyden@upenn.edu. 2. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania, USA; University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA. 3. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 4. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada; Hospital for Sick Children, Toronto, Ontario, Canada. 5. Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. 6. Courageous Parents Network, Newton, MA, USA. 7. Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Abstract
CONTEXT: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVES: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiversupportat the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed. CONCLUSION: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
CONTEXT: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVES: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiversupportat the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed. CONCLUSION: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Authors: Catriona R Mayland; Katy A Sunderland; Matthew Cooper; Paul Taylor; Philip A Powell; Lucy Zeigler; Vicki Cox; Constance Gilman; Nicola Turner; Kate Flemming; Lorna K Fraser Journal: Palliat Med Date: 2022-08-01 Impact factor: 5.713
Authors: Lisa C Lindley; Radion Svynarenko; Kim Mooney-Doyle; Annette Mendola; Wendy C Naumann; Jessica Keim-Malpass Journal: Am J Hosp Palliat Care Date: 2021-05-25 Impact factor: 2.500
Authors: Chris Feudtner; Russell Nye; Douglas L Hill; Matt Hall; Pam Hinds; Emily E Johnston; Sarah Friebert; Ross Hays; Tammy I Kang; Joanne Wolfe Journal: JAMA Netw Open Date: 2021-08-02