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>
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
78415-72-2 (milrinone); body weight; child; clergy; conference abstract; controlled study; dietitian; emergency ward; feeding; follow up; heart failure; heart graft; home visit; hospice; hospital admission; hospital discharge; hospital readmission; human; inotropism; milrinone; money; mortality; outpatient; palliative therapy; satisfaction; social worker; travel
Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time rather than at home where there is improved quality of life and less exposure to hospital acquired infections. In our state pt < than 21 years of age are able to receive concurrent care home hospice (HH) and still remain listed for HTX. We hypothesize that the continued utilization of HH will decrease the frequency of clinic visits, emergency department (ED) use and hospital admissions.
Burnette A L; Henderson H T; Adams V L; Savage A J
Journal of Heart and Lung Transplantation
2020
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/10.1016/j.healun.2020.01.072" target="_blank" rel="noreferrer noopener">10.1016/j.healun.2020.01.072</a>
The experience and perceptions of siblings of pediatric intensive care unit patients: A qualitative study
Family; Hospital Discharge; Intensive Care; Pandemics; Pediatrics; Phenomenology; Post PICU outcomes; Sibling experience; Siblings; Trauma
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents experience post-traumatic stress disorder, few studies have addressed post-PICU outcomes in siblings and siblings' voices of their own experience are absent from the literature.The purpose of this study was to understand the experiences of school aged and adolescent siblings, ages six to 17 years, whose brother or sister experienced admission to a PICU due to a critical illness or injury. Interpretive phenomenology was used to gain an in-depth understanding of the experiences and perceptions of the lived experiences of siblings of PICU patients. Seven participants were identified from a list of families whose child was in the PICU at Dell Children's Medical Center within the past two years and discharged from the hospital for three months or longer. Families were screened for the presence of siblings in the household and for additional inclusion and exclusion criteria before being approached for to participate in the study. Those families meeting criteria received a study information letter and follow up phone call inviting them to participate and providing contact information for the researcher if they wanted to receive further information on the study. Data collection consisted of demographic information to describe the sample and semi-structured interviews to address the research questions. Interviews were conducted either face-to-face prior to the COVID-19 pandemic or by videoconference during the pandemic, and audio recorded and then transcribed word-for-word. Data analysis and interpretation utilized Colaizzi's methodology and Merleau-Ponty's Phenomenology of Perception (2012). Four themes emerged from the data: What I Remember; What I Felt; What Helped; and What's the Same and What's Different. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
Christie LM
Children's Health 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/10.1207/s15326888chc2401_5" target="_blank" rel="noreferrer noopener">10.1207/s15326888chc2401_5</a>
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.
Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A
BMJ Supportive and Palliative Care
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/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.196</a>
Challenges following hospital discharge for children with medical complexity
challenges; children with medical complexity; hospital discharge; pediatrics
OBJECTIVES: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls. METHOD(S): In this prospective study, we designed and executed a postdischarge phone call for patients discharged from an inpatient complex care team between May and November 2018. The call included dichotomous and open-ended questions to identify challenges regarding health status, follow-up appointments, medications, home nursing, medical supplies and/or equipment, and discharge instructions. These were recorded in the electronic health record. Details regarding identified challenges and corrective actions were categorized by 2 reviewers and adjudicated by a third reviewer if disagreement occurred. RESULT(S): Descriptive statistics were used to summarize these findings. Sixty-seven phone calls were completed within 1 week of discharge. Two-thirds of calls identified at least 1 challenge, and more than one-third of calls identified 2 or more challenges for a total of 90 challenges. The most common challenges involved health status (26.7%), follow-up appointments (21.1%), and medications (20%). The majority of challenges were addressed by either caregivers or the multidisciplinary team, with the exception of home nursing challenges. CONCLUSION(S): Discharge challenges were commonly identified by caregivers of children with medical complexity. The majority of postdischarge challenges were addressed, with some addressed by families themselves. These results can inform health care providers about challenges to anticipate and suggest future interventions to mitigate anticipated challenges for a safe discharge and transition of care for these at-risk patients. Copyright © 2020 by the American Academy of Pediatrics
Musial A; Butts B; Loechtenfeldt A; Herrmann L E; Schmidlin E; Kelley J; Hail T; White C M; Thomson J
Hospital Pediatrics
2020
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/10.1542/hpeds.2019-0306" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0306</a>
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Archives of Disease in Childhood
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/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>