Pediatric Neuropalliative Medicine.

Neurological disease in childhood has significant impacts on not only physical well-being, but also on the social, environmental, and emotional health of the child, their family, and the larger community. Pediatric neuropalliative medicine is a recently developed area of subspecialty practice that supports families affected by serious neurological illness in navigating uncertain illness trajectories, refractory symptoms, and the myriad medical decisions that arise over the life of the child. Despite their medical needs, children with neurological diseases live full, joyful, and connected lives with their families, many of whom also experience personal growth and find meaning in their caregiving. Patients and families under the care of neurologists also face many systemic and interpersonal biases, both within the health care system and in the community, and encounter frequent gaps in their home and community-based supports. This chapter summarizes what is known about pediatric neuropalliative medicine and highlights the future research, educational, and clinical innovations that are needed to build more comprehensive and well-prepared systems to address unmet needs. Particularly in the modern era of child neurology practice where disease-modifying treatments are becoming increasingly available, pediatric neuropalliative medicine is an essential area of subspecialty practice that helps to support the personhood and quality of life of the individuals affected by serious illness and their families. As medicine helps more and more children with neurological impairment survive, medical treatment must include not only treatment for the physical body, but also care and support for the complexity of human experience of living with serious illness.

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling.

AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical ventilation (HMV). METHOD: Inductive thematic analysis was performed on data from telephone interviews with parents who chose for and against HMV for their child with SNI at three academic children's hospitals across the USA. RESULTS: Twenty-six parents/legal guardians of 24 children were interviewed. Fourteen children had static encephalopathy, 11 received HMV, and 20 were alive at the time of parent interviews. Themes included how HMV related to the child's prognosis, risk of death, and integration with goals of care. Although clinicians voiced uncertainty about how HMV would impact their child, parents felt this was coupled with prescriptive/intimidating examples about the child's end of life and judgments about the child's quality of life. INTERPRETATION: While prognositc uncertainty exists, this study suggests that parents of children with SNI seek clinician counseling about HMV that considers their goals of care and views on their child's quality of life.

Grief Trajectories of Bereaved Parents of Adolescents and Young Adults With Advanced Cancer: A Qualitative Analysis Using Phenomenology.

Different parents grieve differently. However, research directed at understanding the important contextual or individual factors that influence the path each bereaved parent takes is lacking. In this qualitative analysis we seek to understand the array of bereaved parent experiences more completely. By deeply diving into one parent dyad using interpretive phenomenology analysis and situating that story within the conventional content analysis of 13 other bereaved parents of adolescents and young adults (AYAs) who died from advanced cancer, we illustrate the roles of religion/spirituality, maintaining a connection, and fulfilling parental roles as elements of grief processing. Clinicians and investigators should consider similar individualized approaches to understanding and supporting the grief experiences of bereaved parents before and after the death of a child.

Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions.

OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate supportive clinical care strategies identified by bereaved parents of children with complex chronic conditions. DESIGN: Qualitative analysis of 21 open-response items from the cross-sectional "Survey of Caring for Children with Complex Chronic Conditions" querying communication, decision-making, and end-of-life experiences. SETTING: Large tertiary care children's hospital. PATIENTS: Parents of children with complex chronic conditions who received care at a large academic institution and died between 2006 and 2015. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: An iterative multistage thematic analysis of responses was used to identify key themes pertaining to clinical care strategies that support parents of children with complex chronic conditions. Open-ended responses were analyzed from 110 of 114 (96%) of survey respondents. The majority of parents had children with congenital/chromosomal complex chronic conditions who died 3.9 years (interquartile range, 2.2-6.7 yr) prior to their parents' study participation. Although informational themes related to clear honest communication, consistent messaging, and enhanced care coordination were identified, parents emphasized the relational aspects of clinical care including inclusivity of their expertise about their child's needs, recognition of their unique experience as parents, and maintenance of connection with clinicians through bereavement. CONCLUSIONS: Clinical care strategies that support parents of children with complex chronic conditions reflect the unique needs of this group of children. Relational strategies such as including parents as experts in their child's care were paramount to parents of children with complex chronic conditions throughout their child's medical journey and at end of life.

An Evolving Identity: How Chronic Care Is Transforming What it Means to Be a Physician.

Physician identity and the professional role physicians play in health care is rapidly evolving. Over 130 million adults and children in the USA have complex and chronic diseases, each of which is shaped by aspects of the patient's social, psychological, and economic status. These patients have lifelong health care needs that require the ongoing care of multiple health care providers, access to community services, and the involvement of patients' family support networks. To date, physician professional identity formation has centered on autonomy, authority, and the ability to "heal." These notions of identity may be counterproductive in chronic disease care, which demands interdependency between physicians, their patients, and teams of multidisciplinary health care providers. Medical educators can prepare trainees for practice in the current health care environment by providing training that legitimizes and reinforces a professional identity that emphasizes this interdependency. This commentary outlines the important challenges related to this change and suggests potential strategies to reframe professional identity to better match the evolving role of physicians today.

"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients.

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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU.

BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors. METHODS: This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. RESULTS: Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child. CONCLUSIONS: Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.

Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions.

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital. METHODS: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across five domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age. RESULTS: 266 children with CCCs died in the study timeframe; 45% were infants (n = 120), 52% (n = 137) were male, 42% (n = 113) were white, 64% (n = 170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of three CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the two years prior to death, 98% (n = 261) had an ICU admission, 75% (n = 200) had a procedure requiring sedation, and 29% (n = 79) had received cardiopulmonary resuscitation. 86% (n = 229) died in the ICU. CONCLUSION: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life.

Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical Complexity.

OBJECTIVE: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. METHODS: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children's hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress. Using constant comparative methodology, we inductively analyzed deidentified transcripts for emergent themes. RESULTS: We interviewed 19 participants (89.4% female) with a mean age of 43 years (range 32-54 years). The mean age of the participants' children was 10.8 years (range 1-20 years). Twelve participants' children identified as white and four identified as Black. Three central themes regarding CMC caregivers' stress-coping strategies emerged: (1) maintaining a positive mindset, (2) developing and relying on interpersonal support networks, and (3) making time for self-preservation. All three themes were universally reported (n = 19/19) by our participants. The most common subthemes for each theme, respectively, focused on staying hopeful and celebrating moments of joy; cultivating supportive relationships with family, friends, and fellow CMC family caregivers; and finding pleasure in "little things" (e.g., everyday activities and hobbies). CONCLUSION: Family caregivers of CMC utilize a multi-faceted approach to cope with the stress and challenges routinely encountered in caring for CMC. This study's findings could be used to inform future clinical efforts and research directions aiming to improve clinicians' ability to support CMC caregivers' well-being.

Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer.

Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Methods: Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Results: Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (n = 31, 55%) and non-pain symptom management (n = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Discussion: Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.

Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment.

CONTEXT: Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences. OBJECTIVE: To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions. METHODS: This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated. RESULTS: Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents. CONCLUSION: Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers.

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. Methods: A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. Results: There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. Conclusions: This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.

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.

Goals of Care Among Parents of Children Receiving Palliative Care.

Importance: 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. Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. Design, Setting, and Participants: 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. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: 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. Results: 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. Conclusions and Relevance: 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.

Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review.

CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. OBJECTIVES: To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. METHODS: A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. RESULTS: The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. CONCLUSIONS: Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.

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

CONTEXT: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.

Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions.

Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs.Setting/Subjects: Bereaved parents of children with CCCs who received care at a large academic institution in the United States and died between 2006 and 2015. Measurements: Survey items were analyzed descriptively and integrated with thematic analysis of open-response items to identify key themes pertaining to parents' perspectives on technology. Results: 110/211 (52%) parents completed the survey and at least 1 open-response item. More than 60% of parents had children with congenital/chromosomal or central nervous system progressive CCCs, used technology at baseline, and died in the hospital. A subset of parents recalled making decisions either not to initiate (n = 26/101, 26%) or to discontinue (n = 46/104, 44%) technology at end of life. Parents described both the benefits and burdens of technology. Two themes emerged regarding technology's association with the (1) intersection with goals of care and (2) complications and regret. Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms. Conclusions: Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.

Relationships and Resources Supporting Children With Serious Illness and Their Parents.

OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study's aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents. METHODS: We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13-35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis. RESULTS: Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA-parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care. CONCLUSIONS: Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.