Pediatric Palliative Care Program Research Articles

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

ObjectiveDyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim...

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs.

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.

Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection

BackgroundPaediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process.MethodsWe drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders’ perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes.ResultsThe programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors.ConclusionsOur findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

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.

The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment.

Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [P=0.05] and inpatient PPC billable full time equivalent staff [P=0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

PurposeTo describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents.MethodsA 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.ResultsThis 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.ConclusionsDescribing 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.

"It Becomes a Family I'm a Part of…We Get to Carry Each Other": Themes from Qualitative Interview of Patients Enrolled in an Inpatient Palliative Care Support Program for Adolescents and Young Adults.

Background: The pediatric palliative care literature provides little evidence regarding the lived experiences of adolescents and young adults (AYAs). Objectives: We sought to evaluate the aspects of a palliative care peer support program, which were most helpful to patients, and identify areas for improvement to better address their psychosocial needs. Design: This was a retrospective, cross-sectional study, which described self-reported Streetlight program evaluation using thematic analysis of interviews with AYAs. A total of 10 interviews was completed. Setting/Subjects: Thirty-three current and former Streetlight participants (13-30), enrolled in the Streetlight program for at least six months, were recruited during hospital admissions and clinic visits at UF Health Shands Hospital in the United States. Of the 33, 2 participants died before interviews could be conducted. A total of 10 interviews were conducted. Results: Thematic analysis of the 10 individuals identified 5 themes. They were (1) normalization of life in hospital, (2) mental health and instillation of hope, (3) companionship and connection, (4) diversity of volunteers, and (5) gratitude. Conclusions: Results suggest that AYAs who participated in a peer support, palliative care program benefitted from their exposure to volunteer social support. Addressing the need for continued study of this population provides opportunities to expand peer support, pediatric palliative care programs to other hospitals and care facilities.

Goals of Care Among Parents of Children Receiving Palliative Care

While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.

THE THERAPEUTIC POTENTIAL OF GUIDED IMAGERY AND MUSIC FOR PARENTS WITHIN A PEDIATRIC PALLIATIVE CARE SETTING

Parents caring for a child with a chronic life-limiting illness experience a wide range of therapeutic needs. This manuscript investigates the potential of Guided Imagery and Music (GIM) as a multidimensional therapeutic approach for parents with children in pediatric palliative care. Drawing upon Goldberg's (2004) holographic field theory model, Clark's (2014) synthesis model of GIM, and Bonde's (2000) three levels of metaphor, this paper explores the multifaceted and multilayered nature of GIM grounded in the author’s clinical practice and includes a composite case description of parents within a pediatric palliative care program. GIM’s capacity to hold and facilitate expression of complex emotions on multiple levels of consciousness before and during bereavement can connect parents with their inner wisdom during this challenging time.

An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries.

Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that cares for children with life-threatening/life-limiting illnesses and their families. PPC aims to alleviate physical, psychological, and social distress in children with life-threatening/life-limiting illnesses and their families and improve their quality of life. PPC is an essential service that should be implemented in all nations, as it is a human right. Moreover, a core value of PPC services is to alleviate children's suffering, irrespective of cure availability. Hence, the global consensus on palliative services must be universal and include developing countries with limited resources. While PPC services are growing internationally, the GCC countries have yet to implement these valuable services in the region. This work aims to define the local base information important to facilitating the PPC program. We explored and identified the information vital for establishing a successful program, which was then categorized and mapped into subgroups. In doing so, we outline a roadmap to facilitate the smooth introduction of PPC in GCC countries to benefit the lives of children with life-limiting illnesses.

Physicians' Knowledge, Attitudes, and Perception Toward Pediatric Palliative Care in Saudi Arabia: A National Exploratory Survey.

Pediatric palliative care (PPC) helps maintain the quality of life for both children and their families. It has been identified as an important goal within the global health agenda. In Saudi Arabia, the discipline remains in its infancy, as illustrated by the absence of PPC programs in academic and health care institutions. The aim was to conduct a pilot study assessing physicians' knowledge, attitudes, and perceptions toward PPC. Data were gathered through a self-administered questionnaire sent to physicians working in Saudi Arabia. One hundred twelve completed the survey (male 54.2%, n = 50). A total of 40.8% (n = 42) had 20 years or more of experience, 42.9% (n = 48) were from the hematology-oncology specialty, and 68.5% (n = 74) received no training in PPC. Half suggested that children should be informed of their condition but mostly when reaching 12 or 15 years of age. Various physicians reported that the most appropriate time to discuss a transition to palliative care goals is when diagnosing an incurable condition or when despite all efforts, a condition continues to progress and death is expected. Multiple gaps were identified. PPC basic concepts should be included in the formal medical curriculum (e.g., pain management, communication, and ethical considerations at the end of life). There is also a significant need to develop further both primary and specialized palliative care.

Children with medical complexity and pediatric palliative care: Data by a respiratory intermediate care unit.

Pediatric palliative care (PPC) is an active and total approach to the care of children with life-limiting conditions and their families. PPC programs provide ongoing treatment for children with medical complexity (CMC), many of whom will reach adulthood. Aim of the study was to describe a population of CMC attendingin six preselected months the Respiratory Intermediate Care Unit of a tertiary referral hospital for southern and central Italy. We enrolled all CMC patients admitted to our unit in six preselected months and registered pathologies and different categories of childhood diseases, devices and needs, hospitalization and home care plan. Among the 275 children admitted to our unit, 130 CMC were included. Median age was 9.9 (0.1-40.0) years. The main pathologies recorded were neuromuscular, neurological, respiratory, metabolic and malformative diseases, genetic syndromes and outcomes of prematurity. Comorbidity due to respiratory, digestive, neurological, cardiac and urological involvement was present in a high percentage of cases. Among our patients, only 46 were not carriers of any medical device. The average length of hospitalization was 7.0 (1.0-270.0) days with 2 (1.0-7.0) admissions per year per patient. Home care activation was not required for 47 out of 130 patients. Children eligible for PPC are increasing and their survival results in a rise of comorbidities and special needs demanding multilevel interventions. Respiratory symptoms are the most recurrent ones observed, thus requiring an expert in PPC with expertise in the respiratory field. Sharing data and knowledge of CMC needs may help improve care coordination.

Using Normalization Process Theory to Evaluate an End-of-Life Pediatric Palliative Care Web-Based Training Program for Nurses: Protocol for a Randomized Controlled Trial.

Palliative care (PC) is a new concept in Iraq, and there is no training for health care specialists or the public. The lack of education and training programs is the most important barrier for PC. Intermediate training is needed for nurses who regularly manage patients with life-threatening diseases. The End-of-Life Nursing Education Consortium for pediatric palliative care (PPC) program is intended for nurses who are interested in providing care to children with life-limiting diseases or providing support in the event of an accident or unexpected death. Our trial aims to evaluate the effect of a web-based training course, using the Normalization Process Theory. It focuses on how complex interventions become routinely embedded in practice and on training of a sample of academic nurses in the application of PPC in routine daily practice. It hypothesizes that nurses will be able to provide PC for the pediatric population after completing the training. This is a multicenter, parallel, pragmatic trial in 5 health care settings spread across a single city in Babylon Province, Iraq. Participants will be recruited and stratified into 2 categories (critical care units and noncritical care units). In the experimental condition, 86 nurses will be trained in the application of PPC for 2 weeks through a web-based training course powered by the Relais Platform. The nurses will be invited to participate via email or instant messaging (WhatsApp, Telegram, or Viber). They will provide end-of-life care in addition to usual care to children and adolescents with life-limiting conditions. In the control condition, 86 nurses will continue usual care. The program's effectiveness will be assessed at the level of nurses only. We will compare baseline findings (before the intervention) with postintervention findings (after completing the training course). A further assessment will be performed 3 months after the course. As numerous unidentified factors can influence the effect of the training, we will perform a progressive evaluation to assess sample selection, application, and intervention value, as well as implementation difficulties. The nursing staff will not be blinded to the intervention, but will be blinded to the results. The study trial recruitment opened in July 2020. The first outcomes became available in December 2020. The trial attempts to clarify the delivery of PC at the end of life through the implementation of a web-based training course among Iraqi nurses in the pediatric field. The study strengths include the usual practice setting, staff training, readiness of staff to participate in the study, and random allocation to the intervention. However, participants may drop out after being transferred to another department during the study period. ClinicalTrials.gov NCT04461561; https://clinicaltrials.gov/ct2/show/NCT04461561. PRR1-10.2196/23783.

Cultivating Gratitude in Bereaved Families: Understanding the Impact of the Bereavement Workshop on the Families of Deceased Patients in the Pediatric Palliative Care Program

Background Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care to parents and relatives of deceased children who have previously been cared for by health professionals. Objetive A bereavement workshop for parents is proposed as an intervention strategy, providing accompaniment to the families of deceased patients who received pediatric palliative care (PPC). Methods This is a descriptive, qualitative, and exploratory study. Two focal group sessions were performed in 2019 with 23 families who were formal caregivers of pediatric patients in the Programa de Cuidando de ti (Program “Taking Care of You”), Cali, Colombia. These sessions, guided by the pediatric palliative care group. Data were analyzed using content analysis. Results 60 families received the personalized letter of condolences with invitation to the workshop, 23 families attended the workshop. From the gratitude activity, families made 49 thank you cards, the following categories were highlighted: Communication, Hope, compassion, acceptance, humanization, learning, gratitude, active listening, coping strategies, regards, faith and humanization. Conclusion Strategies that favor adequate emotional management of the grieving process should be promoted. This study reflects the perceptions of parents attending a bereavement workshop. It highlights the gratitude, feelings and reflections of the family members during the health process and the death of the child while receiving accompaniment by a pediatric palliative care team.

The Have and Have Nots: Characteristics of Hospitals With a Pediatric Palliative Care Program.

Pediatric palliative care (PPC) is a board-certified subspecialty1 that provides expert medical management to patients with serious illness. PPC improves pain and nonpain symptoms,2,3 optimizes communication and goal concordant care,4,5 and improves patients’ quality of life.6 Still, PPC programs are neither ubiquitous nor uniformly staffed throughout the United States.In this issue of Pediatrics, Weaver et al7 highlights characteristics of hospitals with a pediatric palliative care program. Past studies have investigated PPC program prevalence, team composition, and services offered; however, these studies have relied on self-reporting.8,9 This study is novel because it used The Children’s Hospital Association Annual Benchmark Report to examine PPC program prevalence and the characteristics of hospitals supporting these programs. As such, we now understand that an unacceptable 20% of pediatric hospitals lack a PPC program.This finding could be perceived as the study’s primary takeaway. Yet, its real impact is its elucidation of differences between hospitals that do and do not support a PPC program. Weaver et al grouped characteristics into operational, missional, educational, and financial categories to give the results structure. They found that larger hospitals with higher acuity are more likely to have PPC programs. Hospitals with pediatric-friendly home hospices and/or respite care in their community are more likely to have a PPC program. Results also highlight that hospitals with Joint Commission accreditation or Magnet Nursing Designation, Accreditation Council for Graduate Medical Education training programs, or an Accountable Care Organization are statistically more likely to have a PPC program.This constellation of hospital characteristics suggests that they and their communities have the financial health to optimize all aspects of pediatric health care. Hospital size, visit volumes, patient acuity, and possessing an Accountable Care Organization are all drivers of financial health. Additionally, these hospitals can and do support the costly endeavor of staffing, training, and maintaining Magnet Nursing Designation, Joint Commission accreditation, and Accreditation Council for Graduate Medical Education training programs. They also support a PPC program, which typically cannot cover its operational costs, let alone generate revenue because of how reimbursement structures currently exist. PPC program existence and growth require operational and philanthropic financial support.Hospital financial health may also be a substantial factor why 20% of pediatric hospitals do not have a PPC program. PPC has now been a valuable subspecialty for decades. It is not novel nor is it limited only to end-of-life care and thus of limited utility. These traditional reasons for the lack of a PPC program are no longer relevant. Rather, this study provides data supporting the belief that finances now determine the presence and likely growth of a PPC program within a hospital.This study’s true “pearl” is the unveiling of this disparity. Moreover, without national metrics or other incentives, hospitals lack the motivation and likely will not have or grow PPC programs unless new motivations or mandates emerge. This study is a call to action for all pediatricians to join PPC providers who have long advocated for change. We need state and national PPC payment models to ensure all hospitals can afford programming. We also need national requirements on the presence and staffing requirements of PPC within hospitals to give health systems a reason to accept the costs of supporting a PPC program. Only then will the thousands of children in need of PPC have access to it.10

Survey of Pediatric Palliative Care Quality Improvement Training, Activities, and Barriers.

Children with serious illness deserve high-quality pediatric palliative care (PPC). With expansion of PPC provision, it is important to understand the quality improvement (QI) activities of PPC clinicians and programs. To describe the 1) background, education/training, and activities in QI and 2) perceived barriers to QI efforts among PPC clinicians and programs nationally. An electronic survey was sent to members of the Pediatric Palliative Improvement Network, the National Coalition for Hospice and Palliative Care Pediatric Task Force, and the PPC Research Network as part of a study to develop hospital-based, primary PPC quality measures. Surveys queried participants' background, education/training, individual/team QI efforts, and barriers to QI work. Results were summarized descriptively. Of the 95 respondents; most were female (84 [88%]) and/or white (84 [88%]). The majority (57 [54%]) were physicians, although participants represented a variety of clinical disciplines, researchers (10 [9%]), and administrators (6 [6%]). One-quarter (25 [26%]) reported having <10 hours total of training in QI, yet two-third (63 [66%]) participated in QI work. About one-third (35 [37%]) reported that their program had no dedicated staff for QI activities, yet over half (56 [59%]) of participants reported that their team participated in QI work. Participants reported that lack of personnel/time, standardized measures/tools, education/training/mentoring in QI, systems to promote QI work, and financing/grants were barriers. Over half of PPC participants in this study reported involvement in QI activities despite limited staffing/time, QI training, and standardized measures, which presents challenges to this work.

Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States.

Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition. Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis. Sixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47). Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.

Preparing a Pediatric Palliative Care Program for Sustainable Support: A Practice Reflection.

Pituch, Kenneth J.; Simon, Natalia; Weaver, Meaghann S.; Lindley, Lisa C. Author Information