Pediatric Palliative Care Patients Research Articles

Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders.

Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the conservative treatment of LUTD fails for any reason, it is considered to be complicated LUTD, in which a surgical approach is warranted. Cutaneous vesicostomy (CV) is a simple, well-tolerated, and potentially reversible procedure that protects the upper tracts. We describe our experience using CV for this complex population. Children with CP and other neuromuscular diseases admitted to pediatric long-term care units for palliative care between 2015 and 2019 were included in the study. They present multi-system involvement, polypharmacy, and Gross Motor Function Classification System levels of 4 or 5. We retrospectively studied this population's indications and results of CV. Of the 52 admitted patients, 18 presented LUTD with UTI (n:18; 100%), stones (n:5; 28%), progressive hydroureteronephrosis (n:3; 17%), or stones (n:2; 11%). Conservative initial management (catheterizations, prophylaxis antibiotics) was effective in half the cases. The remaining nine were defined as complicated LUTD and underwent CV. After a mean follow-up of 11.3 months, the follow-up showed improved hydronephrosis in all nine (100%) patients. Recurrent UTIs were no longer seen in eight of nine patients, although three patients required bladder irrigations; bladder stones did not recur after CV; the kidney stones needed further intervention. Revision of the CV was required in two (11%) cases at 12 and 24 months postoperatively due to stoma stenosis. CV is a relatively simple and effective procedure representing a pragmatic solution for managing complicated LUTD in complex long-term institutionalized pediatric palliative care patients with neuropathic bladders.

Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients

Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients

Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review

Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field’s significance, there is a notable scarcity in current literature, which underscores the pressing need for further research into the attributes of PPC programs that effectively enhance the quality of life (QoL) for pediatric patients. This study particularly emphasizes the pivotal role of schools as key community resources within this framework, highlighting the crucial aspect of educational integration in PPC. Through a systematic review of relevant literature and applying stringent inclusion and exclusion criteria, we identified pertinent studies across various databases. Of these, 30 articles met our criteria and were subject to a thorough qualitative analysis. Our findings indicate that while PPC programs may vary in their methodologies, they consistently share certain core elements that significantly boost the QoL for pediatric patients. These include a holistic approach that addresses the physical, emotional, psychosocial, and spiritual facets of care; encourages the active involvement of the patient in decision-making processes; and ensures timely access to PPC services. Importantly, our analysis identified the critical role of educational settings in enhancing QoL, shedding light on the vital need for educational inclusion and the integration of schools into the broader spectrum of PPC services. The distinct individual perceptions of QoL and the varied international practices in PPC underscore the imperative to tailor successful strategies to specific local contexts, thereby fostering the global well-being of pediatric palliative care patients.

Psychologists as Pivotal Members of the Pediatric Palliative Care Team

ContextPediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. ObjectivesThis special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. MethodsExisting literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. ResultsAs children with serious illness are at risk for mental and physical health symptoms, psychologists’ specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. ConclusionsWith strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.

Quality of Care in Pediatric Palliative Care: A Scoping Review.

Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed to identify the variables associated with the quality of care of PPC patients in Spain, focusing specifically on three areas: structure and process of care, psychological aspects of care, and care of patients approaching the end of life. The review was conducted following PRISMA-ScR guidelines. Searches were performed in the PubMed, Scopus, Web of Science, Embase, ProQuest, and Dialnet databases covering the period extending from January 2000 to May 2023. Finally, 35 studies were identified for the complete review. A total of 30 studies include variables associated with the structure and process of care, 20 include variables associated with psychological aspects of care, and 23 studies integrate variables related to patient care at the end of life. Analysis suggests that enhancing professional training in aspects such as communication with patients and families, creating intimate spaces with flexible visiting hours, increasing emotional support, promoting frequent contact with healthcare teams, and transparently communicating about illness and imminent death to both families and minors could improve the quality of PPC.

Psychosocial Well-Being of Siblings of Pediatric Patients in Palliative Home Care.

Despite the proposed high burden of siblings of children and adolescents with life-limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being. In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests. In total, 44 siblings (28 female; age 7-18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n=25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological well-being and self-esteem. Siblings of PPC patients yielded significant higher scores in the subdomain prosocial behavior compared to normative data as measured by the SDQ. Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.

COVID-19 in pediatric palliative care patients: Multicenter, retrospective cohort study

Background: Studies have shown the risk factors for COVID-19 severity in children, including comorbidities, but information on the infection course in children with life-limiting conditions is sparse. Aim: To describe the effect of COVID-19 on pediatric patients receiving palliative care due to life-limiting conditions. Design: We conducted retrospective cohort study. The WHO Clinical Progression Scale was used to measure COVID-19 severity. Setting/participants: Seven of the 24 invited pediatric palliative care centers participated in this study. We analyzed the medical records of children under palliative care with confirmed COVID-19 (January 2020–April 2022) Results: Records of 60 patients with COVID-19 aged 0.24 to 21.6 years (mean (SD); 9.8 (6.6)) were collected. The largest group of patients with COVID-19 was children with congenital malformations and chromosomal abnormalities (42%); the most common manifestation was fever (85%). Bacterial coinfection was confirmed in 17 (28%) children. Fifteen (25%) children required hospitalization, including four admitted to the Intensive Care Unit. Mild COVID-19 was identified in 44 (73%) children, moderate in 11 (18%), severe in 3 (5%), and death in 2 (3%). Six of the 20 eligible children were vaccinated against SARS-CoV-2, followed by 16 mothers and fathers. Conclusion: In the study population initial presentation of COVID-19 was predominantly a mild; however, the small sample size precluded definitive conclusions. For children under palliative care, we should identify if they have an advance care plan for COVID-19, such as desires for intensive care support. Further studies are needed to define the short and long-term effects of COVID-19 in children with life-limiting conditions.

Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer.

Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.

Children's understanding of dying and death: A multinational grounded theory study.

The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. This qualitative study obtained interview data from N=44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

Mentoring the Wellbeing of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia.

The Quality of Care Collaborative Australia (QuoCCA), working across 6 tertiary centers throughout Australia, builds capability in the generalist and specialist pediatric palliative care (PPC) workforce, by providing education in metropolitan and regional areas. As part of the education and mentoring framework, Medical Fellows and Nurse Practitioner Candidates (trainees) were funded by QuoCCA at four tertiary hospitals throughout Australia. This study explores the perspectives and experiences of clinicians who had occupied the QuoCCA Medical Fellow and Nurse Practitioner trainee positions in the specialised area of PPC at Queensland Children's Hospital, Brisbane, to identify the ways in which they were supported and mentored to maintain their wellbeing and facilitate sustainable practice. Discovery Interview methodology was used to collect detailed experiences of 11 Medical Fellows and Nurse Practitioner candidates/trainees employed by QuoCCA from 2016 to 2022. The trainees were mentored by their colleagues and team leaders to overcome challenges of learning a new service, getting to know the families and building their competence and confidence in providing care and being on call. Trainees experienced mentorship and role modelling of self-care and team care that promoted wellbeing and sustainable practice. Group supervision provided dedicated time for reflection as a team and development of individual and team wellbeing strategies. The trainees also found it rewarding to support clinicians in other hospitals and regional teams that cared for palliative patients. The trainee roles provided the opportunity to learn a new service and broaden career horizons as well as establish wellbeing practices that could be transferred to other areas. Collegial interdisciplinary mentoring, with the team learning together and caring for each other along common goals, contributed immensely to the wellbeing of the trainees as they developed effective strategies to ensure their sustainability in caring for PPC patients and families.

“More life and more days”—patient and care characteristics in a specialized acute pediatric palliative care inpatient unit

Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016–2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients’ age (1–35.5 years, median: 4.8 years) and length of stay (1–186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2–20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients’ predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit.Conclusion: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families.What is Known:• Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity.• There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described.What is New:• Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code.• The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.

Evaluation of The Opinions of The Pediatric Palliative Care Patients' Families Regarding The COVID-19 Pandemic: A Cross-Sectional Study

Aim: While many countries around the world have faced similar challenges in pediatric palliative care as COVID-19, there have also been challenges that vary from country to country. In this study, it was aimed to evaluate the difficulties and opinions of families receiving pediatric palliative care in our country during the pandemic process.&#x0D; Materials and Methods: The study is a cross-sectional survey applied to families followed in the pediatric palliative care service between 01.12.2018 and 01.12.2020. In the study, caring parents were asked to share their experiences and opinions in the last year.&#x0D; Results: Of the 175 families followed, 112 were included in the study. In the first year of the pandemic, it was determined that 42% of the families had no change in their lives, 16.1% had psychological problems, 35.7% had social (quarantine and restrictions) problems and 6.3% had economic problems. When the family order and endurance of those who stated that there were significant changes in their lives in the first year of the pandemic were examined, it was found that these individuals were bored with their families and had difficulty staying at home (2.482; p=0.013).&#x0D; Conclusion: The COVID-19 pandemic process in pediatric palliative care has been milder and has a better prognosis than expected. Psychosocial difficulties are the most prominent areas of distress.

Applicability of Actigraphy for Assessing Sleep Behaviour in Children with Palliative Care Needs Benchmarked against the Gold Standard Polysomnography

In children with life-limiting conditions and severe neurological impairment receiving pediatric palliative care (PPC), the degree to which actigraphy generates meaningful sleep data is uncertain. Benchmarked against the gold standard polysomnography (PSG), the applicability of actigraphy in this complex population was to be assessed. An actigraph was placed on N = 8 PPC patients during one-night polysomnography measurement in a pediatric tertiary care hospital's sleep laboratory. Patient characteristics, sleep phase data, and respiratory abnormalities are presented descriptively. Bland-Altman plots evaluated actigraphy's validity regarding sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency compared to PSG. PSG revealed that children spent most of their time in sleep stage 2 (46.6%) and most frequently showed central apnea (28.7%) and irregular hypopnea (14.5%). Bland-Altman plots showed that actigraphy and PSG gave similar findings for sleep onset, sleep offset, wake after sleep onset (WASO), total sleep time (TST) and sleep efficiency. Actigraphy slightly overestimated TST and sleep efficiency while underestimating all other parameters. Generally, the Actiwatch 2 low and medium sensitivity levels showed the best approximation to the PSG values. Actigraphy seems to be a promising method for detecting sleep problems in severely ill children.

Investigation of care burden and musculoskeletal pain of parents of paediatric palliative care patients in Turkey.

Caring for a paediatric patient is associated with psychological, physical and social challenges. It may be easy to identify the emotional effects of caregiving burden on parents, but the physical effects are often not known. We aimed to examine the relationship between caregiver burden and musculoskeletal pain in caregiver parents of children accessing palliative care services. This was a cross-sectional study among caregiving parents of paediatric palliative care patients, conducted between 15 July 2020 and 15 January 2021. The care burden was examined using the Zarit Caregiver Burden Questionnaire, and the physical complaints of parents with the Extended Nordic Musculoskeletal Questionnaire. A total of 69 caregiving parents were included in the study. The median Zarit Caregiver Burden score was 54.0. In parents with pain complaints, the most common pain areas were lower back (62.3%), back (60.9%) and neck (42.0%). Pain was statistically significantly associated with the duration of the disease in the child, especially shoulder pain (P = 0.023) and wrist pain (P = 0.024). Lower back pain was observed at a higher rate among caregiving parents. As the duration of the child's illness increased, the number of caregiver parents with shoulder and wrist pain increased. It is important to extend support to caregivers of paediatric palliative care patients to alleviate their physical difficulties.

The Design of a Data Management System for a Multicenter Palliative Care Cohort Study.

Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.

Lower Respiratory Tract Infections in Pediatric Patients with Severe Neurological Impairments: Clinical Observations and Perspectives in a Palliative Care Unit.

Pediatric palliative care (PPC) patients with a severe neurologic impairment (SNI) suffer considerable morbidity and increased mortality from lower respiratory tract infections (LRTIs). The indication and choice of antibiotic therapy for bacterial LRTIs are often challenging given the lack of evidence-based treatment recommendations for this vulnerable patient population. We conducted an observational study before the SARS-CoV-2 pandemic in an eight-bed pediatric palliative care inpatient unit. During two years of surveillance, we diagnosed and treated 33 cases of a bacterial LRTI in patients with an SNI; 5 patients were hospitalized with an LRTI more than once. Two patients died from complications due to LRTIs during hospitalization. Three patients (15%) were colonized with multidrug-resistant organisms. An initial antibiotic treatment failed in one-third of the cases; a successful therapy of the LRTI was achieved with broad-spectrum and extended-spectrum penicillins (n = 13; in combination with β-lactamase inhibitors for n = 5 cases), cephalosporins (n = 13: n = 4 second-generation and n = 9 third-generation cephalosporins; in combination with other substances for n = 5 cases), ciprofloxacin (n = 3), and meropenem plus vancomycin (n = 2) or meropenem (n = 1). A respiratory specimen was obtained in 66.7% of cases with P. aeruginosa, E. coli, and K. pneumoniae accounting for the majority of the detected species. In most cases, there was no definite confirmation that the LRTI was caused by the species detected. The diagnostics and treatment of bacterial LRTIs in PPC patients with an SNI are challenging. The lack of controlled studies and the heterogeneity of this population often necessitate an individual approach. This lack of controlled studies may partly be compensated by a set of diagnostic and antibiotic stewardship criteria.

Difficulties Experienced by Turkish Parents With Children in Pediatric Palliative Care: An Exploratory Qualitative Study.

We aimed to identify the difficulties of the parents of pediatric palliative care patients and how they cope with these problems in this qualitative study in Turkey. This study was carried out with 20 parents by in-depth interviews. Content analysis was used for data analysis. Four themes were identified: The problems in the process of acceptance, the difficulties of being at the hospital, the expectations from the health staff, the coping strategies. The families had difficulties in coping with the end-of-life of their children. Future researches may focus on the effectiveness of family-centered care and the experience of parents with its implementation. The findings suggest that social support resources and coping strategies can play an important role in the acceptance of the child's disease process and maintenance of palliative care effectively.

Multidrug-resistant organisms in paediatric palliative care patients - Prevalence, risk factors and the impact of a liberal hygiene concept.

Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk-adaption and barrier nursing. Two-year surveillance with MDRO screening of all intakes (N=386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre-defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2-year period, no MDRO-related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.

End of Life Therapeutic Videography in Pediatrics: Feasibility and Acceptability

Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research by performing a more comprehensive examination of children's experiences with life-shortening illness. Methods: Eligible patients ages eight and older made a legacy video with the assistance of investigative staff and completed a questionnaire to evaluate their emotional states before and after making the video. Bereaved parents also received a questionnaire to assess the impact of the legacy. Results: Nine patients enrolled and eight completed the study through the therapeutic exit interview. Most reported decreased anxiety and a positive experience. Conclusion: Therapeutic videography is feasible and acceptable to accomplish and can improve the emotional state of participants. Conducting research requiring active participation of patients very near the end of life proved to be challenging.

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR).

Pediatric palliative care (PPC) patients require years of care across professions and sectors. Sharing treatment-related information and communicating among different PPC professionals is critical to ensure good quality of care. In Germany, this communication is mostly paper-based and prone to errors. Therefore, an electronic cross-facility health record (ECHR) was participatorily designed with users, wherein information can be shared and PPC professionals can communicate with each other. As this form of electronic health record differs from existing models in Germany, there is a need for successful implementation to ensure a positive impact. Therefore, the facilitators and barriers to the implementation of ECHR in PPC were examined. Using the consolidated framework for implementation research (CFIR), transcripts of 32 interviews, 3 focus groups, and 20 think-aloud studies with PPC professionals were analyzed. CFIR indicated that the ECHR-design was viewed positively by users and can be a facilitator for implementation. Barriers exist, mainly due to the fact that the implementation is not planned, the use of the ECHR involves effort, costs are not covered, and all users must be motivated to use the ECHR for functionality. CFIR helps uncover the crux of the issues that need to be considered when planning ECHR implementation to improve care in PPC.