Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
2024
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.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Acta Paediatrica
2024
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/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
child; Palliative Care; human; palliative therapy; hospice; education; systematic review; human experiment; psychosocial care; conference abstract; multidisciplinary team; middle income country; government; lowest income group; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; resource limited setting
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. <br/>Method(s): Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. <br/>Result(s): From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including 9 from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. (Table Presented) <br/>Conclusion(s): PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Kenneson SA; Hughes-Visentin A; Doherty M; Kaye E; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses
child; article; controlled study; human; major clinical study; terminal care; education; attention; content analysis; physician; multidisciplinary team; nurse; in-hospital mortality; coronary care unit
OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to contextualize patterns in quality of dying and death (QODD) scoring. DESIGN: This mixed methods study reports on a cross-sectional survey of PCICU staff involved in patient deaths. SETTING: Single, quaternary PCICU from 2019-2021. PARTICIPANTS: Multidisciplinary staff (bedside nurses, allied health professionals, and medical practitioners) rated QODD and voluntarily added free-text responses. We derived descriptive categories of free-text responses using content analysis. Response sentiment was classified as positive, negative or both positive and negative. We compared category and sentiment frequency by discipline, EOL medical intensity, years of experience and QODD score quartiles.None. MEASUREMENTS AND MAIN RESULTS: Of 60 deaths and 713 completed staff surveys, 269 (38%) contained free-text responses, including 103 of 269 (38%) from nurses. Of six qualitative categories (i.e., relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors), relational dynamics was most frequent (173 responses). When compared by discipline, family experiences were more common in nursing responses than medical practitioners or allied health. High intensity was associated with infrequent discussion of family experience and greater focus on temporal conditions and clinical circumstances. Emotional expressions and temporal conditions were more common in lowest QODD quartile surveys. Although 45% staff responses contained both sentiments, relational dynamics and family experiences were more likely positive. Negative sentiments were more common in the lowest QODD quartile surveys and responses containing temporal conditions or structural/situational factors. CONCLUSION(S): Synergistic relationships between the multidisciplinary team and family shaped clinician's positive responses. Attention to team dynamics may be a crucial ingredient in interventions to improve EOL care. Our data support that team-based education initiatives should consider differential foci between disciplines and EOL characteristics.Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
Broden EG; Bailey VK; Beke DM; Snaman JM; Moynihan KM
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000003357" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000003357</a>
Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
child; Palliative Care; adult; article; controlled study; female; human; male; palliative therapy; pediatrics; clinical article; qualitative research; skill; health care system; thematic analysis; decision making; multidisciplinary team; semi structured interview; organization; patient care team
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. Results: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Chocarro-Gonzalez L; Sanz-Esteban I; Palacios-Cena D
BMC 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/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01194-5</a>
"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients
child; terminal care; article; human; emotion; Internal Medicine; interview; content analysis; education; dying; physician; resident; multidisciplinary team; genetic transcription; meaning-making; care behavior; skill; witness; tension; personhood; internal medicine; learning environment; self care
BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. <br/>OBJECTIVE(S): This qualitative study aimed to characterize the experiences of residents caring for dying patients and elucidate the impact of emotional, cultural, and logistical factors on learning. <br/>METHOD(S): 6 US internal medicine and 8 pediatric residents who had cared for at least 1 dying patient completed a semi-structured one-on-one interview between 2019 and 2020. Residents described an experience caring for a dying patient including their confidence in clinical skills, emotional experience, role within the interdisciplinary team, and perspective on how to improve their education. Interviews were transcribed verbatim and investigators conducted content analysis to generate themes. <br/>RESULT(S): 3 themes (with subthemes) emerged: (1) experiencing strong emotion or tension (loss of patient personhood, emerging professional identity, emotional dissonance); (2) processing the experience (innate resilience, team support); and (3) recognition of a new perspective or skill (bearing witness, meaning making, recognizing biases, emotional work of doctoring). <br/>CONCLUSION(S): Our data suggests a model for the process by which residents learn affective skills critical to EOL care: residents (1) notice strong emotion, (2) reflect on the meaning of the emotion, and (3) crystallize this reflection into a new perspective or skill. Educators can use this model to develop educational methods that emphasize normalization of physician emotions and space for processing and professional identity formation.
Gibbon LM; Buck L; Schmidt L; Bogetz JF; Trowbridge A
American Journal of Hospice 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/10.1177/10499091231181567" target="_blank" rel="noreferrer noopener">10.1177/10499091231181567</a>
End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach
Abuse perpetration; Care de-escalation; Child abuse and neglect; Child abuse victimization; End-of-life decision-making; Multidisciplinary team; parens patriae
BACKGROUND: Parents have a constitutionally-protected, fundamental right to make decisions concerning the health and well-being of their children, afforded by the Due Process Clause of the Fourteenth Amendment. However, parental rights are not absolute, and may be curtailed after a finding of parental "unfitness" including perpetration of egregious child abuse/neglect. Court intervention may be necessary to assert "parens patriae" authority to protect a child's well-being. Disagreements over medical care for a child (particularly when parent maltreatment resulted in life-altering clinical conditions and parents are suspected of perpetrating abusive injuries) often pose conflicts of interest. End-of-life decision-making involving abuse perpetrators may be influenced by self-interest, due to potential for escalation of criminal charges. OBJECTIVE: Discuss medico-legal decision-making for children in child welfare custody using a detailed case example involving a child near-fatally, abusively injured by his parents; review of relevant case law/national legal precedents; and clinical policy statements guiding end-of-life decision-making for pediatric patients. PARTICIPANTS/SETTING/METHODS: Using an exploratory, quasi-qualitative approach, perceived experiences of purposefully-selected taskforce members identified key themes that informed a care de-escalation protocol, implemented across the state. RESULTS: Key themes included coordinated communication, expedited legal proceedings, and balancing child's best interest (the right not to suffer for a prolonged period of time or sustain complications) with parents' rights and due process concerns, and informed protocol development. CONCLUSIONS: Practicable guidance established in the protocol can be theoretically adapted at the local level to address the complexity inherent in end-of-life decision-making for children in custody.
Carroll R S; Hirst E; Hudson M; Shaw M; Deutsch S A
Child Abuse and Neglect
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.chiabu.2020.104441" target="_blank" rel="noreferrer noopener">10.1016/j.chiabu.2020.104441</a>
Palliative care in 9 children with neurodegeneration with brain iron accumulation
article; body mass; bone density; bone strength; botulinum toxin; child; clinical article; contracture; controlled study; densitometry; dystonia; facilitation; female; femur; home care; Hospice and Palliative Care Nursing; human; hypersalivation; iron; ketogenic diet; male; multidisciplinary team; neurodegeneration with brain iron accumulation; pain; palliative therapy; pathologic fracture; prevention; questionnaire; school child; skeleton; spasticity; spine; thorax
Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents. Material and methods: The children were treated at home by a multidisciplinary team. Densitometry was used to evaluate the condition of the skeletal system. Botulinum toxin was injected into the muscles in doses between 22 and 50 units/kg. The quality of palliative care was assessed on the basis of a specially designed questionnaire for parents. Results: The observations were performed on a group of 9 patients with NBIA. On admission, the median age of patients was 9 years (7-14). The average time of palliative home care was 1569 days (34 days-17 years). The median age at death (6 patients) was 11 years (7-15). The botulinum toxin injections gave the following results: reduction of spasticity and dystonia, reduction of spine and chest deformation, relief of pain and suffering, facilitation of rehabilitation and nursing, prevention of permanent contractures, and reduction of excessive salivation. Bone mineral density and bone strength index were reduced. Two patients experienced pathological fracture of the femur. The body mass index at admission varied between 9.8 and 14.9. In 7 cases, introduction of a ketogenic diet resulted in the increase of body mass and height. The ketogenic diet did not worsen the neurological symptoms. The parents positively evaluated the quality of care. Conclusion: Palliative home care is the optimal form of treatment for children with NBIA.
Dangel T; Kmiec T; Januszaniec A; Wazny B
Neurological Sciences
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="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040054/" target="_blank" rel="noreferrer noopener">10.1007/s10072-019-04099-5</a>
Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres
article; artificial feeding; child; clinical decision making; drug withdrawal; female; human; hydration; male; multidisciplinary team; palliative therapy; systematic review; terminal care
There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.
Anderson AK; Burke K; Bendle L; Koh M; McCulloch R; Breen M
BMJ Supportive and Palliative Care
2019
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-2019-001909" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001909</a>
Providing cost-effective and coordinated care for children with medical complexity
adolescent; child; female; home care; human; major clinical study; male; controlled study; nurse; multicenter study; conference abstract; caregiver; gastrostomy; cerebral palsy; pediatrician; outpatient; administrative personnel; artificial ventilation; congenital heart disease; diagnosis; fatigue; limited mobility; machine; medical technology; multidisciplinary team; neuromuscular disease; salary; stress; tracheostomy; ventilator; working time
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and families are at risk of fragmented care, sub-optimal continuity and high healthcare resource utilization due to their multiple medical issues and care needs. Consequently, the Children's Complex and Home Care Services (CCHS) was established in our institution in April 2016 with the primary aims of providing coordinated, cost-effective and patient- and family-centered care to CMC and their families. This service is run by a multi-disciplinary team of pediatricians, nurses, allied health and administrative staff. CMC in our context have a chronic life-limiting condition that involves at least three body systems and are often technologically dependent with limited mobility. In view of the numerous healthcare professionals involved in their care, multiple medical appointments are often scheduled which result in significant caregiver stress and fatigue. One of the key service implementations was multidisciplinary clinics whereby children are seen over the course of 1-3 hours by multiple clinical, nursing and allied health specialists. The purpose of this study is to describe CCHS service implementations, characterize CCHS patient characteristics and evaluate how multidisciplinary clinics have reduced their healthcare resource utilization. Method(s): 55 patients who were enrolled in the CCHS between April 2016 and October 2018 were studied. Result(s): Patient ages ranged from 2 months to 14.3 years old at time of enrolment. The majority of patients had underlying primary genetic diagnoses (47.2%), and other patients had either the primary diagnosis of cerebral palsy (20%), congenital cardiac disease (5.4%), neuromuscular disease (3.6%) or another or undiagnosed underlying condition (23.6%). Medical technology required at time of enrolment included enteral devices such as nasogastric/nasojejunal tubes or gastrostomies (94.5%), suctioning machines (54.5%), ventilator support (34.5%) and tracheostomies (16.4%). CCHS multidisciplinary clinics managed to reduce the number of outpatient attendances by 6.8 visits per patient-year for CMC enrolled into the service. This saves caregivers from an equivalent number of workdays of lost salary, and translates to C 450 of savings per patient per year on just transportation costs alone. Conclusion(s): CMC are heterogeneous in conditions but similar in care needs, and reducing outpatient attendances and healthcare costs is possible with coordinated multi-disciplinary clinics.
Chow C; Shahdadpuri R
Archives of Disease in Childhood
2019
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).
Talking to parents about their preferences for their child's place of death: A prospective study
hospice; government; advanced cancer; major clinical study; prospective study; case study; outcome assessment; hematologic malignancy; solid malignant neoplasm; conference abstract; human; child; female; palliative therapy; patient care; death; multidisciplinary team; clinician; achievement; social aspect
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both home as the preferred place of death and the suitability of home death as a quality outcome. Rather, one study suggested that offering a discussion is more important for outcomes. Despite these findings, the achievement of preference remains a common quality measure of paediatric palliative care (PPC) services. This study explored factors which influenced the initiation of discussions, preferences, achievement of preferences and their value as an outcome measure. Methods A prospective case series review was conducted from March 2015-February 2017. Data included: 1) Routinely collected PPC PPOD data for CYP and their parents including the offer of a discussion, preferences expressed and if preference was achieved 2) Field notes taken at multidisciplinary team (MDT) meetings between clinicians where preference was discussed after the child's death 3) Advanced care planning and place of care data extracted from medical notes. Results Data was available for 256 CYP (117 female). 29% of CYP had a solid tumour malignancy, 10% had a haematological malignancy and 61% died of non-malignant disease. Parents of CYP with malignancies were more likely to be offered a discussion of PPOD (60/73 compared to 84/156 of those with non-malignant disease). A hospital was preferred by 38%, home 28% and hospice 18%. Preference for hospital or hospice was more likely to be achieved. Per clinician report, parent preference was influenced by patient condition, continuity of care, family and social factors and availability of services. Conclusion Contrary to government policy and voluntary sector statements home deaths are not preferred by most parents. Achievement of PPOD is unsuitable as a measure of service performance.
Henderson E; Peake J; Al-Khabbaz E; Langner R; Dinsdale A; Craig F; Bluebond-Langner M
Archives of Disease in Childhood
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/goshabs.18" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.18</a>
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
pain; social support; caregiver; terminal care; education; major clinical study; psychologist; outpatient; cancer patient; hospital patient; holistic care; malignant neoplasm; antibiotic agent; conference abstract; financial management; physiotherapist; human; child; female; male; palliative therapy; drug therapy; multidisciplinary team; doctor nurse relation; ambulatory care; dietitian; nutritional counseling; patient coding; physiotherapy; wound
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care IV antibiotics. Other Cankids Social Support services were generally not being offered. Objective of this service was to run a One-stop Social Support Clinic providing holistic care and strengthening Palliative Care Outpatient and Inpatient Services. Design/Methods: Pilot phase of the Clinic (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by trained professional team. The Clinic operated seven days a week, with 68 clinics, providing 11 services. Providers were trained for Patient Navigation and referrals, Standard Operational Procedures and Patient data management. Results: Total 1,204 patients received 7,101 episodes of care. 195(16%) patients received Palliation of symptoms. Indication for inpatient admissions in 8 out of 64 were for end of life care. 23(62%) of 37 new inpatient admissions were from the Clinic. 261 (57%) of 456 patients who came for IV Ambulatory Care received other social support services including Pain, Symptom Management, Psychological, Nutritional, Hematological Support, Physiotherapy, Medical assistance and Investigations and Educational Scholarships. 25 Patient Care Training Sessions were attended by 347 caregivers. 62.6% participants were extremely satisfied and 37.6% satisfied with the services provided. Conclusions: A well run Social Support One-stop Clinic together with a Multi Disciplinary Team including Palliative Care Physicians, Nurses, Psychologists, Nutritionists,Physiotherapists and Patient Navigators at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.
Anis H; Taluja A; Chuki T; Crack L; Arora R; Bagai P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?
quality of life; dying; adolescent; pediatrics; advanced cancer; cancer patient; cancer survival; cancer chemotherapy; cancer diagnosis; mortality rate; coordination; conference abstract; human; child; female; male; adult; diagnosis; terminal care; clinical article; palliative therapy; pediatric patient; multidisciplinary team; oncology nurse; clinician
Mulyowa I
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Talking to families when death becomes a likely outcome-a pilot simulation programme to improve end of life conversations during and around PICU admission
conversation;death;simulation;advanced cancer;bone marrow transplantation;cancer staging;cerebrovascular accident;Child;conference abstract;controlled study;craniofacial surgery;experimental therapy;human;immunology;life sustaining treatment;multidisciplinary team;nursing role;oncology;palliative therapy;pulmonary hypertension;treatment failure
Aims & Objectives: End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are sometimes initiated late in the disease process. Anecdotal evidence is that many clinicians shy away from the subject matter for a wide variety of reasons. A multidisciplinary, one-day pilot simulation course to address this unmet need was designed by the PICU and palliative care teams for members of the multidisciplinary team (MDT) who admit to our PICU. Methods The course was oversubscribed and candidates were evenly drawn from medical and senior nursing roles; specialties represented included PICU, immunology, bone marrow transplant, oncology, pulmonary hypertension and craniofacial surgery. A range of clinically complex and personally challenging clinical scenarios were developed for use with experienced educational actors. These included: Previously fit and well child post cerebrovascular accident with a deeply religious family Child with end stage cancer whose parents had the option of an experimental treatment Child with advanced pulmonary hypertension whose parents are angry about failure of treatment Child with incurable malignancy with parents reluctant to ask for withdrawal of life sustaining treatment but who secretly wish it to be offered A demonstration scenario was run by the faculty for all candidates and four simulations were run in groups of four. Simulation safety and debrief tools were utilised throughout Results Feedback from the day was universally positive. Conclusions There is significant need for this course. Plans are now under way to extend it to a wider cohort of the PICU MDT and run it on a regular basis.
Sidgwick P;Du Pre P;Skellett S
Pediatric Critical Care Medicine
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/10.1097/01.pcc.0000537439.06687.80" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537439.06687.80</a>
Changing times-PICU and palliative care
Palliative therapy;Adult;amber;awareness;conference abstract;controlled study;Education;Female;Human;Male;Multidisciplinary team;oncology;patient information;prospective study;staff;work
Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed on the spectrum for palliative care needs every Wednesday using the surprise question: Would you be surprised if the child was still alive in the next few days to weeks (RED), would you be surprised if the child died in the next months or years (AMBER), would you be surprised if the child died of their condition in childhood (YELLOW), would you be surprised if the child died early of this condition but lived until adulthood (GREEN). Acute admissions (<10days admission with no previous history), Oncology patients, and those greater than 16 years were excluded. Up to date patient information was discussed in a multi-disciplinary team setting. Results Data from 53 MDTs over 78 weeks was analysed in study period with at least 2 meetings every month. 58% of the patients admitted to PICU would have benefitted from palliative care with 39% of these being in the amber group. Conclusions There is a large population of patients admitted to PICU who would benefit from palliative care. Staff awareness, education and support to care for this complex group of patients through changes in recruitment strategies and job descriptions, staff psychological support, in house palliative care consultant availability and development of family liaison roles is essential.
Subramanian G;Kauffmann L
Pediatric Critical Care Medicine
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/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537862.99545.8f</a>
Improving communication within multi-disciplinary teams in children with life limiting conditions
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Subramanian G;Consterdine K;Kauffmann L
Pediatric Critical Care Medicine
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/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</a>