Primary palliative care integrated model in paediatric ICU: an international cross-sectional study

Grunauer, Michelle; Mikesell, Caley; Callejas, Gabriela Bustamante

doi:10.1136/bmjspcare-2020-002627

Cited by 7 publications

(7 citation statements)

References 32 publications

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“…38 Longer LOS also corresponded with an increased parental focus on pain and suffering. Although all critically ill children can benefit from a primary/integrated palliative care approach, [39][40][41] children with cancer and/or longer PICU stays may especially benefit from specialty pediatric palliative care for comprehensive pain management. 35,42,43 Parents of children with complex chronic conditions may benefit from stronger involvement in caring activities during the EOL period, including tending to their child's needs in close partnership with the bedside nursing team.…”

Section: Discussionmentioning

confidence: 99%

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

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Section: Discussionmentioning

confidence: 99%

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

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“…Patients with life-limiting or life-threatening conditions require timely and family-centered palliative care, especially in a pediatric setting. 81 In medical terms, palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life for the patients. Though comfort is often the most common goal identified, symptom identification and treatment remains challenging in nonverbal children with neurological impairments.…”

Section: Discussionmentioning

confidence: 99%

“…In these cases, an integrated model of care that combines pediatric intensive care and primary pediatric palliative care depending on the disease trajectory might be a fundamental component of the best available standard of care. 81 …”

Section: Discussionmentioning

confidence: 99%

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Tumienė¹,

Riera²,

Grikinienė³

et al. 2022

JMDH

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More than 650 inherited metabolic diseases may present with epilepsy or seizures. These diseases are often multisystem, life-long and induce complex needs of patients and families. Multidisciplinary care involves all stages of disease management: diagnostics, specific or symptomatic, acute and chronic treatments, and integrated care that takes into account not only medical, but also manifold psychosocial, educational, vocational and other needs of patients and their caregivers. Care coordination is indispensable to ensure smooth transitions of care across life and disease stages, including management of emergencies, transition from pediatric to adult services and palliative care. Care pathways are highly diverse and have to find the right balance between highly specialized and locally provided services. While multidisciplinary teams consist of many professionals, a named supervising physician in a highly specialized healthcare setting and a care coordinator are highly important. As the greatest burden of care always falls onto the shoulders of patients and/or families, patient empowerment should be a part of every care pathway and include provision of required information, involvement into common decision-making, patient’s and family’s education, support for self-management, liaison with peer support groups and emotional/ psychological support. Due to the rarity and complexity of these diseases, sufficient expertise may not be available in a national healthcare system and cross-border services (virtual or physical) in the recently developed European Reference Networks should be ensured through the proper organization of referral systems in each EU and EEA country. Finally, digital technologies are particularly important in the provision of services for patients with rare diseases and can significantly increase the availability of highly specialized services and expertise.

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“…To create a partial score within each domain goal, we summed scores for all items and converted them to a percent such that the range of potential scores was 0–100. Lastly, a total index was created by calculating the average of the percent scores of each domain (potential final scores 1–100) ( 20 ). The arithmetic mean and standard deviation (SD) were used to summarize these scores.…”

Section: Methodsmentioning

confidence: 99%

Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

Grunauer¹,

Mikesell²,

Bustamante³

et al. 2021

Front. Pediatr.

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Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

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Primary palliative care integrated model in paediatric ICU: an international cross-sectional study

Cited by 7 publications

References 32 publications

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement

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