Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
ethics; neonatology; perinatal; preterm; resuscitation
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Archives of disease in childhood
2021
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-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</a>
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
BMC Palliative Care
2021
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/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</a>
Community Resource Connection for Pediatric Caregivers with Unmet Social Needs: A Qualitative Study
Health Equity; pediatric caregivers; Qualitative Research; Social Determinants of Health; Unmet Social Needs
OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore caregivers' perceived barriers to and facilitators of community resource connection. METHODS: We conducted semi-structured interviews with caregivers of pediatric patients admitted to one inpatient unit of an academic quaternary care children's hospital. All caregivers who screened positive for one or more unmet social needs on a tablet-based screener were invited to participate in an interview. Interviews were recorded, transcribed, and coded by two independent coders using content analysis, resolving discrepancies by consensus. Interviews continued until thematic saturation was achieved. RESULTS: We interviewed 28 of 31 eligible caregivers. Four primary themes emerged. First, caregivers of children with complex chronic conditions felt that competing priorities related to their children's medical care often made it more challenging to establish connection with resources. Second, caregivers cited burdensome application and enrollment processes as a barrier to resource connection. Third, caregivers expressed a preference for geographically tailored, web-based resources, rather than paper resources. Lastly, caregivers expressed a desire for ongoing longitudinal support in establishing and maintaining connections with community resources after their child's hospital discharge. CONCLUSION: Pediatric caregivers with unmet social needs reported competing priorities and burdensome application processes as barriers to resource connection. Electronic resources can help caregivers identify locally available services, but longitudinal supports may also be needed to ensure caregivers can establish and maintain linkages with these services.
Vasan A; Darko O; Fortin K; Scribano PV; Kenyon CC
Academic Pediatrics
2021
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<a href="http://doi.org/10.1016/j.acap.2021.09.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.09.010</a>
Development of the Dutch Structure for Integrated Children's Palliative Care
family; life-limiting; integrated care; life-threatening; care network; children’s palliative care; homecare; paediatric palliative care team
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children's Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children's university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, 'palliative care for children', provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician's support centre for dilemma's regarding the end of life of children was set up. The efforts to have children's palliative care embedded in the regular Dutch health care insurance are ongoing.
Vallianatos S; Huizinga CSM; Schuiling-Otten MA; Schouten-van Meeteren AYN; Kremer LCM; Verhagen AAE
Children
2021
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/children8090741" target="_blank" rel="noreferrer noopener">10.3390/children8090741</a>
Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life: A National Study
end-of-life care; hospice care; Medicaid; pediatric hospice care; pediatric mental and behavioral health
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between January 1, 2011, and December 31, 2013, and latent class analysis, this study identified 4 distinctive classes of children. Neurodevelopment and anxiety class (26.5% of the sample) had 41.3% of children of 15 years or older, who had an average of 1.4 MHBH comorbidities and took 17 medications; 29.1% had physical health comorbidities, and 23% were dependent on technology. In the Behavior and Neurodevelopment class (20%), 53.1% of the children were between ages 6 and 14 years, who had an average of 2 MHBH comorbidities and took 17 medications. In the Physiology class (43.4%), 65.5% of children were younger than 5 years, had 1 MHBH comorbidity, and took 19 medications. In the Mood, Behaviors, and Anxiety class (10.2%), more than 90% of children were older than 6 years, had 4 MHBH comorbidities, and took 30 medications. In the latter 3 classes, approximately half of the children either had physical health comorbidities or were technology dependent. These findings highlight the importance of end-of-life care that accounts for the likely presence of complicated patterns of MHBH conditions.
Svynarenko R; Beebe LH; Lindley LC
Journal of Hospice & Palliative Nursing
2021
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<a href="http://doi.org/10.1097/njh.0000000000000800" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000800</a>
Medication chart review at end of life of paediatric palliative patients
chart review; end of life; inpatient; medication; paediatric palliative
AIM: This study aimed to review the use of medications in a paediatric palliative care (PPC) population during the last two weeks of life. METHODS: This is a retrospective observational cohort study that included 50 consecutive patients who were referred to KK Hospital PPC service from 2011 to 2015. Those who died after two weeks from discharge date were excluded. Medication charts were reviewed and relevant data were extracted. RESULTS: The study population included 42 patients and consists predominantly oncological and neurological diagnoses. The median number of medications used was 11.5. Ninety-five percent (40 out of 42) of study population required analgesia where 81% (34 out of 42) were opioid. There was prevalent use of antibiotics (86% of study population, 36 out of 42). Less frequently used medications included steroids, sedatives, laxatives and antiemetics (48%, 52%, 48% and 38% of study population respectively). CONCLUSION: Significant number of medications was used in PPC during the last two weeks of life. Apart from significant use of analgesia, there is also notable use of antibiotics. Future directions in education such as prescription of laxatives with opioid are proposed.
Soo JEJ; Chan MY; Bte Adb Rashid NAB; Bte Mohamad Yusri LI; Wynn YY; Noda M; Tewani K
Journal of Paediatrics and Child Health
2021
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<a href="http://doi.org/10.1111/jpc.15719" target="_blank" rel="noreferrer noopener">10.1111/jpc.15719</a>
Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
children; liminality; mucopolysaccharidoses; parents; rare diseases; transition
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities. AIMS: This study aimed to elucidate the meanings of the transition experience of being a parent of a child with MPS. Van Gennep's three-stage rite of passage theory and Turner's theory of liminality were utilised to understand these families' transition experiences are learning to live with their child's ongoing progressive illness trajectory. METHOD(S): A qualitative design utilising hermeneutic phenomenology was used. Longitudinal qualitative in-depth interviews were carried out with eight parents at a three-time point over 17-months period. RESULT(S): This study provided an interpretation of the lived experience of parents of children and young adults with MPS. As such, it embraces a liminal experience of living with a rare life-limiting illness and the unique passage to becoming a parent of a child with MPS. Parents reported their experience of transition from being the parent of a normal healthy child to be the parent of a child with MPS. They described their transition experience as multi-faceted and complex, neither linear nor time-bound, but rather cyclical. CONCLUSION(S): The rites of passage conceptual framework helped to identify specific and significant unmet supportive and social care needs of these families and their children. This information will enhance the development of a substantial support system to meet the family's emotional, psychological and social needs during the illness transitions from diagnosis and throughout their illness journey. Copyright © 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
Somanadhan S; Brinkley A; Larkin PJ
Scandinavian journal of caring sciences.
2021
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<a href="http://doi.org/10.1111/scs.13026" target="_blank" rel="noreferrer noopener">10.1111/scs.13026</a>
Retrospective Pediatric Telepalliative Care Experience
pediatrics; pediatric palliative care; telehealth; telemedicine; telepalliative care
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.
Schmitt S; Ebby C; Doshi A; Bower K; Marc-Aurele K
Journal of Palliative Medicine
2021
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<a href="http://doi.org/10.1089/jpm.2021.0173" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0173</a>
A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period
Paediatrics; Pediatría; Catastrophic condition; Complex chronic condition; Condiciones catastróficas; Crónico complejo; Paediatric admissions; Pediatría interna hospitalaria
INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main objectives of this study are to determine the proportion of CCC in the paediatric hospital population and compare them with other groups of patients admitted (acute and chronic). PATIENTS AND METHODS: A descriptive, retrospective study was carried out in a tertiary maternity-paediatric hospital (from December 2016 to November 2017). All patients admitted into the Paediatric Department were recruited with a fortnightly frequency. A series of demographic, clinical, and pregnancy data were collected. In order to identify the level of complexity of the patients, the Clinical Risk Group (CRG) was used, with 3 groups being created: acute, chronic, and CCC. Statistics analysis was performed using SPSS v24. RESULTS: A total of 1433 patients were included. The proportion of CCC on the Paediatric Ward was 14.4%. The CCC were older patients, mainly admitted due to decompensation or progression of their underlying disease, had a longer admission time, and required support in the Paediatric Intensive Care Unit (PICU) more often than that of the other sub-groups. Just under half (44.7%) of the CCC were carriers of a technological device. Of the total of long stays (>1 month), 71.3% had CCC. CONCLUSIONS: Patients with CCC require long hospital stays, a greater need of intensive care, and use of technology. New approaches to treatment and follow-up need to be established. They should be cost-effective, and at the same time decrease the impact of the disease on the children and their family.
Penela-Sánchez D; Ricart S; Vidiella N; García-García JJ
Anales de Pediatría (English Edition)
2021
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<a href="http://doi.org/10.1016/j.anpede.2020.07.022" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2020.07.022</a>
How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada
Canada; children; Hospitalization; Medical complexity; Readmission; youth
Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of healthcare services. With its first pan-Canadian report on children and youth with medical complexity, the Canadian Institute for Health Information examined how this population uses healthcare services. Key findings include the wide variation in the rate of medical complexity among children and youth across Canada. Children and youth with medical complexity were found to require a high proportion of hospital and emergency department care; however, their readmission rates were found to be lower than that of the general pediatric population.
McKenzie K; Dudevich A; Costante A; Chen XK; Foebel AD
Healthcare Quarterly
2021
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<a href="http://doi.org/10.12927/hcq.2021.26471" target="_blank" rel="noreferrer noopener">10.12927/hcq.2021.26471</a>
Impact of Pediatric Primary Palliative Care Education and Mentoring in Practice
education; mentoring; moral distress; palliative care; pediatrics; primary palliative care
Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and skills of frontline intradisciplinary clinicians in caring for children with serious conditions and their families. We undertook an intensive educational initiative consisting of didactic and mentoring sessions, and mentored quality improvement projects. Outcomes included the following: 93.3% of participants reported comfort in discussing death, suffering, spirituality, and hope with families, and increased comfort in end-of-life care (89.5%), increased knowledge (94.7%) and skills (100%), improved communication (100%), and being better prepared to discuss and access palliative care resources (100%). Secondary outcomes included 33% increase in specialty pediatric palliative care consults and 98% increase in the integration of specialty palliative care for patients with high-risk cancers. Specialty pediatric palliative care referral became standard for patients with cystic fibrosis, high-risk solid and brain tumors, heart failure, and patients receiving a stem cell transplant. Clinician self-reported moral distress decreased by 30%. This project improved primary palliative care knowledge, attitudes, and confidence in skills, access to care, and family satisfaction, and decreased clinician self-reported moral distress. We report on the 4-year period of project implementation and sustainability.
Lafond D; Perko K; Fisher D; Mahmood LA; Hinds PS
Journal of Hospice & Palliative Nursing
2021
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<a href="http://doi.org/10.1097/njh.0000000000000802" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000802</a>
Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
child; end of life; lived experience; memory making; parent
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
Clarke T; Connolly M
The American journal of hospice & palliative care
2021
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<a href="http://doi.org/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</a>
Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital
follow-up; children with medical complexity; children with special health care needs; care coordination; children with complex chronic conditions; patient characteristics
OBJECTIVE: To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. METHODS: We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children's hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. RESULTS: Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission (P = .020) and prolonged length of stay (P = .004) were associated with decreased likelihood of completing recommended follow-up. CONCLUSIONS: Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.
Brown A; Quaile M; Morris H; Tumin D; Parker CL; Warren L; Wall B; Crickmore K; Ledoux M; Eldridge DL; Aikman I
Clinical Pediatrics
2021
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<a href="http://doi.org/10.1177/00099228211047242" target="_blank" rel="noreferrer noopener">10.1177/00099228211047242</a>
High rate of clinically unrecognized SARS-CoV-2 infections in pediatric palliative care patients
Pediatrics; Palliative care; Covid-19; SARS-CoV-2; Comorbidities
Little is known about the frequency and clinical course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections in pediatric patients with severe comorbidities. In this prospective cross-sectional trial, the seroprevalence of SARS-CoV-2-IgG in patients with life-limiting conditions being treated by a large specialized pediatric palliative home-care team was determined. In order to gain insight into the infection chain, close contacts of seropositive patients were also included in the study. We analyzed the sera of 39 patients and found a 25.6% seroprevalence for SARS-CoV-2. No SARS-CoV-2 infections were known prior to the study. No significant difference was found in the symptom load between seropositive and seronegative patients during the risk period for SARS-CoV-2 infections. Of the 20 close contacts tested, only one was seropositive for SARS-CoV-2.Conclusions: Our results indicate a substantially high prevalence of silent SARS-CoV-2 infections in pediatric palliative care patients. Surprisingly, no severe outcomes were seen in this fragile patient collective with severe comorbidities. The chain of infection and thus the reason for the high frequency of SARS-CoV-2 infections in pediatric palliative care patients remain unclear. What is Known: •Even though severe disease courses of COVID-19 have been reported in children, there are yet no established risk factors for SARS-CoV-2 in pediatric patients. What is New: •In this cross-sectional seroprevalence study of palliative pediatric patients with severe life-limiting conditions, a high rate of seropositive patients (25.6%) was found. •Surprisingly, all seropositive patients were previously unrecognized, despite the severe comorbidities of our collective.
Bötticher B; Dinkelbach L; Hillebrecht M; Adams O; Dechert O; Trocan L; Neubert J; Borkhardt A; Janßen G
European Journal of Pediatrics
2021
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<a href="http://doi.org/10.1007/s00431-021-04242-5" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04242-5</a>
From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically
children; palliative care; complex care; disabilities; caregivers; parents
Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. Objectives: This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically. Design: Cross-sectional qualitative study. Setting/Subjects: Parents/legal guardians of children with SNI at a tertiary pediatric academic center in the United States completed 1:1 interviews between August 2019 and February 2020. Measurements: Qualitative researchers with expertise in care for children with SNI, palliative care, and bioethics used thematic content analysis to inductively analyze data for relevant themes. Results: Twenty-five parents/legal guardians of 23 children with SNI participated. Sixty-eight percent were mothers and 24% were fathers; and 68% were white. Thirty-two percent were from other racial and/or ethnic backgrounds. Children predominantly had congenital/chromosomal (n = 15, 65%) and central nervous system static (n = 6, 26%) SNI diagnoses. Four themes emerged regarding both challenges and approaches to understanding children with SNI holistically. These included uniqueness, interdependency, complexity, and universality. Parents felt that by eliciting and incorporating their perspective on these sometimes contrasting but inherently necessary aspects of their child's care, clinicians would understand their children more fully. Conclusion: By viewing the child through the prismed lens of parents, participants described how clinicians could transition from a monochromatic to a technicolor view of their child-including the inherent contrasting needs required for their comprehensive care.
Bogetz JF; Lewis H; Trowbridge A; Jonas D; Hauer J; Wilfond BS
Journal of Palliative Medicine
2021
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/10.1089/jpm.2021.0344" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0344</a>
Palliative Care in Pediatric Pulmonology
palliative care; quality of life; bronchopulmonary dysplasia; communication; pulmonary hypertension; cystic fibrosis; psychosocial support; neuromuscular disease; lung transplant; pediatric pulmonology; primary palliation
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children's Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries.
Baumann T; Das S; Jarrell JA; Nakashima-Paniagua Y; Benitez EA; Gazzaneo MC; Villafranco N
Children
2021
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/children8090802" target="_blank" rel="noreferrer noopener">10.3390/children8090802</a>
Educational Priorities for Providing End-of-Life Care: Parent Perspectives
interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR
Pediatrics
2021
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.2021-051379" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-051379</a>
Pediatric palliative care from nursing and PharmD perspectives
Child; knowledge; nursing; pediatric palliative care; PharmD
Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method(s): A descriptive, cross-sectional, correlational design was used to fulfill the goal of this research. A convenience sample of nursing and PharmD students currently studying in Jordan University of Science and Technology in Jordan was recruited to complete a survey that contained 20 statements about issues on and around the subject of PPC. Result(s): The results showed that there was a significant difference in PPC between nurses and PharmD students. The mother's education (t = 2.158, P = 0.032) and being a nursing or PharmD student (t = 1.969, P = 0.050) were associated with knowledge about PPC. Other listed factors such as gender, working ward, and age were not associated with knowledge of PPC. Conclusion(s): This was the first study in Jordan to survey a sample of nursing students and PharmD students in Jordan about their knowledge of PPC. The current study found that knowledge of nursing and PharmD students regarding PPC was satisfactory, depending on the scale used. Copyright © 2021 Japan Pediatric Society
Abuhammad S; Alzoubi KH; Muflih S; Almasri R
Pediatrics International.
2021
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/ped.14631" target="_blank" rel="noreferrer noopener">10.1111/ped.14631</a>
Canadian surveillance study of complex regional pain syndrome in children
Complex Regional Pain Syndrome; Incidence; Pain Management; Pediatrics; Population Surveillance
This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program (CPSP) reported new cases of CRPS aged 2-18 years monthly and completed a detailed case reporting questionnaire from September 2017 to August 2019. Descriptive analysis was completed and the annual incidence of CRPS by sex and age groupings was estimated. A total of 198 cases were reported to CPSP, 168 (84.8%) met the case definition. The minimum Canadian incidence of CRPS is estimated at 1.14/100 000 (95% CI 0.93 to 1.35/100 000) children per year. Incidence was highest among females 12 years and older (3.10, 95% CI 2.76 to 3.44/100 000). Mean age of CRPS diagnosis was 12.2 years (SD=2.4) with mean time from symptom onset to diagnosis of 5.6 months (SD=9.9) and no known inciting event for 19.6% of cases. The majority of cases had lower limb involvement (79.8%). Nonsteroidal anti-inflammatory drugs (82.7%) and acetaminophen (66.0%) were prescribed more commonly than antiepileptic drugs (52.3%) and antidepressants (32.0%). Referrals most commonly included physical therapy (83.3%) and multidisciplinary pain clinics (72.6%); a small number of patients withdrew from treatment due to pain exacerbation (5.3%). Pain education was recommended for only 65.6% of cases. Treatment variability highlights the need for empiric data to support treatment of pediatric CRPS and development of treatment consensus guidelines.
Baerg KL; Tupper SM; Chu LM; Cooke N; Dick BD; Doré-Bergeron MJ; Findlay S; Ingelmo PM; Lamontagne C; Mesaroli G; Oberlander T; Poolacherla R; Spencer AO; Stinson J; Finley GA
PAIN
2021
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/10.1097/j.pain.0000000000002482" target="_blank" rel="noreferrer noopener">10.1097/j.pain.0000000000002482</a>
End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life
pediatric; palliative care; physician; compassion fatigue; advance practice nurse
Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outside of "business hours." Methods: N = 786 PPC patients at a single center died between 2008 and 2015. Descriptive statistics were prepared for all variables (Wilcoxon rank-sum test for continuous; chi-square or Fisher's exact test for categorical). Results: N = 434 (55%) of deaths occurred outside of business hours; n = 332 (70%) were attended by PPC. Time spent attending a death was not significantly longer when other PPC providers were present but was when certain tasks were performed (coordination with medical examiner and memory making). Conclusion: The occurrence of the majority of deaths outside of business hours has significant implications for service delivery models, provider emotional health, and health care value.
Hardy-Gomez M; Grossoehme DH; Strasshofer D; Brown M; Friebert S
Journal of Palliative Medicine
2021
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/10.1089/jpm.2021.0127" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0127</a>
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
grief; palliative care; end of life; NICU; parents; bereavement
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.
Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE
Journal of Pain and Symptom Management
2021
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.2021.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.015</a>
Factors affecting the grieving process after perinatal loss
Perinatal loss; Attachment style; Complicated grief; Coping style; Developmental trait; Personality trait
Factors associated with the grief process in response to perinatal loss have been investigated. However, few studies focused on the intrapersonal factors, such as developmental and personality traits. Hence, this study aimed to investigate medical and psychosocial risk factors, including inter- and intrapersonal factors for the development of complicated grief following perinatal loss, while considering emotional support.
Kishimoto M; Yamaguchi A; Niimura M; Mizumoto M; Hikitsuchi T; Ogawa K; Ozawa N; Tachibana Y
BMC Women's Health
2021
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/10.1186/s12905-021-01457-4" target="_blank" rel="noreferrer noopener">10.1186/s12905-021-01457-4</a>