Journal of palliative medicine
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Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. ⋯ Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.
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Background: Sleep disturbances, including insomnia, sleep-disordered breathing, and circadian rhythm disorders with potential consequences including excessive daytime somnolence and worsening fatigue, are prevalent yet largely under-measured and therefore under-managed problems in people receiving palliative care. This has the potential to negatively affect the person's functioning and quality of life. Objectives: We aimed to review the current practice of assessment and management of sleep disturbances in people with life-limiting illnesses in Australian and New Zealand palliative care settings, and to define areas for improvement in assessment and management of sleep disturbances and further research. ⋯ Only 40% reported they had access to sleep specialist services for patients. Conclusion: Our findings provide a useful snapshot of current approaches to managing sleep disturbances in palliative care. Gaps in current practice are highlighted, including the lack of structured, clinical assessment, referral pathways, and PCHPs' perceived lack of access to targeted interventions for sleep disturbances.
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Background: Mental health diagnoses can co-occur with complex medical illness in pediatric patients. Pediatricians may not feel comfortable with managing psychopharmacology for patients and access to child psychiatrists can be limited. Palliative care (PC) providers follow patients with serious illness longitudinally to address burdensome symptoms that affect quality of life and may be responsible for evaluation and treatment of mental health concerns; however, education in managing psychologic distress for pediatric palliative care (PPC) providers is limited. ⋯ More than half of providers (54.5%) had no formal training in assessment and treatment of anxiety and depression in pediatric patients. Despite this, many providers (70%) reported feeling comfortable in prescribing antidepressants while also endorsing interest in more training for behavioral health evaluation and treatment (82.5%). Conclusions: Limited training in assessing mental health concerns, prescribing, and managing psychopharmacology suggests an opportunity for more targeted education for pediatric PC providers regarding antidepressant prescribing practices.
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Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. ⋯ Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.
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Multicenter Study
Observations from Optimizing an Electronic Order Set for Withdrawal of Life-Sustaining Treatment.
Background: Withdrawal of life-sustaining treatment (WLST) is a process with unique pressure for all involved. The use of an electronic order set can facilitate best care. Objective: To assess utilization of a WLST order set and time to inpatient death before and after optimization. ⋯ COVID-19 was a hospital diagnosis for 29% of decedents in the 2021-2022 group. Conclusions: In the emotionally and cognitively intense process that is WLST, an order set provides a modifiable panel of defaults. Our experience highlights the power in guiding primary palliative care for WLST in the hospital setting and suggests that advanced practice providers and nonpalliative clinicians, as primary utilizers, be integral in the design of a WLST order set.