Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Children
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Marsden S
BMJ Supportive and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</a>
Mechanical Ventilation In Children With Life-limiting Conditions
Artificial Ventilation; Adult; Cancer Epidemiology; Cerebral Palsy; Child; Chromosome Disorder; Cognitive Defect; Controlled Study; Cross-sectional Studies; Cross-sectional Study; Death; Follow Up; Human; Lung Disease; Major Clinical Study; Mucopolysaccharidosis; Neuromuscular Disease; Only Child; Palliative Care; Palliative Therapy; Quality Of Life; Respiration Artificial; Respiratory Insufficiency; Spain; University Hospital; Ventilators Mechanical; Young Adult
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim was to review palliative indication of home mechanical ventilation (HMV) in Southwestern Spain. Methods: Descriptive cross-sectional study including pediatric patients (aged 0 to 18 years) who were being taken care by the HMV program at the University Hospital Virgen del Rocio in Seville between 2000 and 2015. Results: A total of 78 patients were analyzed, 22 on invasive ventilation (10 with 24 hours/day) and 56 on no invasive ventilation. Duration of HMV varies from 2 days to 15 years. According to standards for pediatric palliative care in Europe, 12 patients suffered from life-threatening illness, (group 1; 4 cancer, 8 no progressive lung disease), 17 had conditions in which premature death is inevitable (group 2; 3 mucopolysaccharidosis, 14 malformative syndrome or chromosomopathy), 38 had progressive conditions without curative options (group 3; 30 neuromuscular diseases, 8 neurological progressive disease of unknown origin), 7 had irreversible but not progressive conditions (group 4; cerebral palsy). When HMV was started 17 patients had severe cognitive impairment, and HMV was indicated to improve quality of life by reducing hospital visits. During follow up, 3 patients died and 3 were weaned from HMV (group 1). Only 4 patients were included in a pediatric palliative care program. Conclusions: Up to 95% of patients with HMV can benefit from palliative care. HMV in children with chronic conditions aims to ameliorate their quality of life, but may pose ethical dilemmas.
Gaboli M; Pecellin ID; Garrido MM; Cantero EQ; Carro CC; Rodriguez LMR; Valencia JPG
European Respiratory Journal
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1183/13993003.congress-2016.OA248