Interprofessional Team Meetings in the Pediatric Cardiac Intensive Care Unit
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Meetings of family members and CICU clinicians were audio recorded. We used quantitative case-coding to compare the duration of contributions made by attendees, …
Walter J; Sachs Emily; DeWitt A; Arnold R; Feudtner C
Pediatrics
2018
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/peds.142.1_MeetingAbstract.659" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.659</a>
Let's Work Together: Collaborative Research Is Needed to Overcome Difficulty Enrolling Families for Bereaved Sibling Research.
Miller EG; Hildenbrand AK; Taggi-Pinto A; Alderfer MA
Journal of pain and symptom management
2018
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.jpainsymman.2018.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.03.015</a>
Making Meaning After the Death of a Child
bereavement; death; medical education; palliative therapy; storytelling; voice; article; child; controlled study; empathy; female; human; mother; narrative; skill; student; videorecording
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.Copyright © 2018 Elsevier Inc.
Clancy S; Lord B
Child and Adolescent Psychiatric Clinics of North America
2018
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.chc.2018.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.011</a>
Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices
Adult; Content Analysis; Convenience Sample; Cross Sectional Studies; Data Analysis Software; Descriptive Research; Descriptive Statistics; Health Services Needs and Demand; Hospice Care; Human; Terminally Ill Patients -- In Adulthood; Thematic Analysis; United Kingdom; Young Adult
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
Knighting K; Bray L; Downing J; Kirkcaldy AJ; Mitchell TK; O'Brien MR; Pilkington M; Jack Barbara A
Journal of Advanced Nursing
2018
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/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">10.1111/jan.13702</a>
Pattern of Readmissions Among Children with Multiple Chronic Conditions versus Children with No Chronic Conditions
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions are at highest risk of readmission after discharge. We sought to compare predictors and timing of readmission in children with multiple chronic conditions to those in children with no chronic conditions. Methods: Using data from the 2013 National Readmissions Database, we analyzed patients aged 1 to 18 years with no chronic conditions or 4 or more chronic conditions. The daily hazard of …
Bucholz EM; Hall M; Gay J; Harris M; Berry Jay
Pediatrics
2018
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/peds.142.1_MeetingAbstract.360" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.360</a>
Perceived challenges in pediatric palliative care among doctors and nurses in Hong Kong
This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total of 680 pediatric doctors and nurses participated in the survey. They tended to perceive the provision of PPC as difficult and considered "advanced skills" (those dealing with death-related issues) challenging. Findings indicate that nurses, professionals who are less experienced, do not have children, and have not received palliative care training perceived a higher level of challenges in providing PPC. Implications for training and support are discussed.
Chan WCH; Wong KLY; Leung MM; Lin M K Y
Death Studies
2018
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/10.1080/07481187.2018.1478912" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1478912</a>
Research barriers in children and young people with life-limiting conditions: a survey.
clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson Briony F; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ supportive & palliative care
2018
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/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Social Media Consequences of Pediatric Death
bereavement; death; grief; knee prosthesis; pediatrics; social media; adolescent; article; caregiver; child; human; videorecording
Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information gathering. It has democratized the process of being remembered through providing an ongoing account of thoughts, pictures, and videos that theoretically live on forever via a digital legacy. Providers should be familiar with how this new generation uses social media during their illness, after death, and in the bereavement process.Copyright © 2018 Elsevier Inc.
Buxton DC; Vest TR
Child and Adolescent Psychiatric Clinics of North America
2018
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.chc.2018.05.008" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.008</a>
The Belgian euthanasia law and its impact on the practises of Belgian paediatric palliative care teams.
Friedel M; deTerwangne B; Brichard B; Ruysseveldt I; Renard M
International journal of palliative nursing
2018
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/10.12968/ijpn.2018.24.7.333" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.333</a>
Well-Child Visits of Medicaid-Insured Children with Medical Complexity
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18 years continuously enrolled in 10 state Medicaid programs in the Truven MarketScan Database between 2010 and 2014. CMC had a complex chronic condition or 3 or more chronic conditions of any complexity identified from International Classification of Diseases, Ninth Revision codes, and the use of 1 or more chronic medications. We measured the number of years with 1 or more WCVs. The χ2 test and logistic regression were used to assess the relationships of WCV-years with the children's characteristics and hospitalization. RESULTS: Over 5 years, 13.4% of CMC had 0 WCVs; 17.3% had WCVs in 1 year, 40.8% had WCVs in 2-3 years, and 28.5% had WCVs in 4-5 years. Fewer children received WCVs in 4-5 years when enrolled in Medicaid fee-for-service compared with managed care (20.9% vs 31.5%; P < .001) and when enrolled due to a disability compared with another reason (18.2% vs 32.2%; P < .001). The percentage of CMC hospitalized decreased as the number of years receiving WCV increased (21.5% at 0 years vs 16.9% at 5 years; P < .001). The adjusted odds of hospitalization were higher in CMC with WCVs in 0-4 years compared with CMC with WCVs in all 5 years (OR range across years, 1.1 [95% CI, 1.0-1.2] to 1.3 [95% CI, 1.3-1.4]). CONCLUSIONS: Most Medicaid-insured CMC do not receive annual WCVs consistently over time. Children with fewer annual WCVs have a higher likelihood of hospitalization. Further investigation is needed to improve the use of WCVs in CMC.
Shumskiy I; Richardson T; Brar S; Hall M; Cox J; Crofton C; Peltz A; Samuels-Kalow M; Alpern ER; Neuman Mark I; Berry Jay G
Journal of Pediatrics
2018
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.jpeds.2018.04.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.04.003</a>