Challenges faced by Chinese community nurses when providing home-based hospice and palliative care: a descriptive qualitative study.

BACKGROUND: Hospital facilities in China are experiencing increased strain on existing systems and medical resources, necessitating the use of home-based hospice and palliative care (HBHPC). HBHPC primarily relies on community nurses and related medical personnel. Understanding the challenges that community nurses face when providing this form of care is urgently needed to optimize the design and delivery of HBHPC. Our study aimed to gain insight into community nurses' challenges when providing HBHPC for patients. METHODS: We performed a descriptive qualitative study using a phenomenology approach. Purposive sampling was used to recruit 13 nurses from two community health service centers in Jinan, Shandong Province, China. A thematic analysis was applied to identify themes from the transcribed data. RESULTS: Three major themes emerged: 1) Community nurses' inadequate self-preparation for providing HBHPC; 2) Patients and their families' non-collaboration in HBHPC; 3) Community health service career disadvantages. Many negative experiences can be attributed to institutional barriers. CONCLUSION: Community nurses faced multifaceted challenges in home care settings. This study could provide a framework for guiding the improvement of interventional variables in the provision of HBHPC. Future research should involve developing effective methods of improving community nurses' job motivation and community health service institutions' incentive systems, as well as increasing advocacy around HBHPC.

Use of Continuous Dexmedetomidine at Home for Nearly Three Years in a Young Woman with End-Stage Cyanotic Congenital Heart Disease and Cyclic Vomiting.

A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.

Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network.

BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC). DESIGN: Mixed methods design. SETTING/SUBJECTS: Providers from the Ohio Pediatric Palliative Care and End-of-life Network. MEASUREMENTS: Using a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC. RESULTS: There was strong consensus on the applicability of each domain to the participants' practices (median scores ranged from 0.97 to 1.0 with interquartile ranges = 0). Consensus on the rank importance of the eight domains was not achieved. Qualitative data included challenges with NCP domain 3 (Psychological and Psychiatric Aspects of Care). It was recommended that titles should remain consistent with adult standards, but domain definitions should be broadened for pediatric HBHPC. Continuity and coordination of care should be added as a ninth domain of quality in pediatric HBHPC. CONCLUSIONS: All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.