Genetic Research within Indigenous Communities: Engagement Opportunities and Pathways Forward.

PURPOSE: Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that impact researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the US participating in genetic research. METHODS: We conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the US to explore perceived risks, benefits, barriers and facilitators of genetic research participation. RESULTS: Participants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms - such as sample and data misuse, stigmatization, or misrepresentation by researchers - revealed strategies for building trust to create more equitable and reciprocal research partnerships. CONCLUSION: Participants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers.

"We'll deal with it as it comes": A Qualitative Analysis of Romantic Partners' Dyadic Coping in Cystic Fibrosis.

Background: Although cystic fibrosis (CF) is a progressive, life-limiting, genetic disease, recent advances have extended survival, allowing persons with CF the time and physical and mental health to form romantic relationships. Previous studies have shown the importance of dyadic coping to positive psychosocial functioning and relationship satisfaction for people with serious chronic illness and their romantic partners, but little work has been done with persons with CF and their partners. The present study examines dyadic coping processes in persons with CF and their romantic partners. Methods: Sixteen adults with moderate to severe CF (Mage=42.3, 43.8% identified as cisgender male, 56.2% identified as cisgender female) and their romantic partners (Mage=43.8, 56.3% identified as cisgender male, 43.7% identified as cisgender female) participated in individual semi-structured interviews focused on topics related to quality of life, communication, and palliative care. We conducted a directed content analysis utilizing Berg and Upchurch's (2007) developmental-contextual theoretical model to examine dyadic coping processes in persons with CF and their romantic partners. Results: Consistent with the developmental-contextual model of dyadic coping, couples described adapting to health and functional declines that occurred over time. Dyads were aligned in their appraisals of illness representation, illness ownership, and perspectives of illness as a shared stressor; they used shared coping mechanisms that included supportive and collaborative actions rather than uninvolved or controlling strategies. Conclusions: We recommend family-based approaches to medical decision-making and goals of care conversations with persons with CF and their partners, aligning those approaches with supportive and collaborative coping configurations. This may improve psychosocial outcomes for patients and their partners.

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

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. Design/Setting/Subjects: Prospective mixed-methods cohort study at a single U.S. children's hospital. Participants included English-speaking parents/legal guardians of a child with SNI with an expected length of stay >1 week and life expectancy >4 weeks. Measurements: Ten-point stress scale administered at PICU admission and discharge with open-ended response items. A subset of parents completed 1:1 semistructured interviews. Data were integrated to examine differences among participants whose stress increased, stayed the same, or decreased, and themes were compared with "good parent" attributes. Results: Twenty-five parents/legal guardians completed the surveys; 15 completed the interviews. Children were a median of 7 years old (interquartile range [IQR] 4, 9; range 1-21) and had a median PICU length of stay of 10 days (IQR 7, 15; range 3-62). Twenty percent (n = 5) of parents were fathers, and 36% (n = 9) had a minority racial/ethnic background. Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.

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.

Pediatric Resident and Program Director Views on Climate Change and Health Curricula: A Multi-Institution Study.

PURPOSE: The American Academy of Pediatrics emphasized in a 2007 policy statement the importance of educating trainees on the impacts of climate change on children's health, yet few studies have evaluated trainee knowledge and attitudes about climate change-related health effects in children. This multi-institution study assessed pediatric resident and program director 1) knowledge/attitudes on climate change and health, 2) perspectives on the importance of incorporating climate and health content into pediatric graduate medical education, and 3) preferred topics/activities to include in climate and health curricula. METHOD: This mixed-methods study employed an anonymous cross-sectional survey of pediatric residents and residency program directors from Association of Pediatric Program Directors (APPD) Longitudinal Educational Assessment Research Network (LEARN)-affiliated programs. Multivariable regression models and factor analyses were used to examine associations among resident demographics and resident knowledge, attitudes, and interest in a climate change curriculum. A conventional content analysis was conducted for the open-ended responses. RESULTS: Eighteen programs participated in the study with all program directors (100% response rate) and 663 residents (average response rate per program 53%, overall response rate 42%) completing respective surveys. Of program directors, only 3 (17%) felt very or moderately knowledgeable about the association between climate change and health impacts. The majority of residents (n = 423, 64%) agreed/strongly agreed that physicians should discuss global warming/climate change and its health effects with patients/families, while only 138 residents (21%) agreed/strongly agreed that they were comfortable talking with patients and families about these issues. Most residents (n = 498, 76%) and program directors (n = 15, 83%) agreed/strongly agreed that a climate change curriculum should be incorporated into their pediatrics training program. CONCLUSIONS: Pediatric residents and program directors support curricula that prepares future pediatricians to address the impact of climate change on children's health; however, few programs currently offer specific training, despite identified needs.

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.

"I won't get to live my life the way I planned it": A qualitative analysis of the experiences of adolescents and young adults with advanced cancer.

BACKGROUND: Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer. PROCEDURE: We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer. RESULTS: A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions … were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone." CONCLUSIONS: Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.

Barriers and facilitators of the return-to-school process affecting adolescent recipients of allogeneic hematopoietic cell transplantation: A qualitative interview study of caregivers.

BACKGROUND: Adolescent hematopoietic cell transplant (HCT) recipients remain out of school for a prolonged period of time; navigating their return to school after completion of therapy can be challenging for caregivers. METHODS: Between August 2020 and June 2021, we conducted individual semi-structured interviews of 19 caregivers of adolescent HCT recipients (10-18 years of age at HCT; 1-7 years post HCT) to understand the challenges faced at the time of their child's return to in-person school post HCT. Conventional content analysis was used to analyze interview transcripts, and thematic analysis was used to identify and organize emerging themes. RESULTS: Three themes emerged from the caregivers' experiences. First, caregivers reported facing several challenges related to lack of communication between their child's healthcare and school teams, which was burdensome for them. Second, some caregivers reported receiving support from school and healthcare professionals, as well as their child's peers, which helped reduce the burden of return to school. Caregivers also reported providing motivational, emotional, and spiritual support to patients. Lastly, caregivers made several recommendations regarding the need for better communication between family, healthcare professionals, and school professionals and availability of supportive care such as mental health counseling and neuropsychological testing. Notably, the need for a return-to-school navigator emerged as a key finding from our analysis. CONCLUSIONS: Caregivers of adolescent HCT recipients face several challenges supporting their children's return to school post HCT, which are related to lack of communication between patients' healthcare and school teams. While some reported receiving support from school and healthcare professionals and their child's peers, the need to coordinate the return-to-school process was burdensome for several caregivers. Additional work is needed to optimize support for HCT recipients and their caregivers during their return-to-school process to minimize burden. Our study findings have the potential to serve as a framework for developing and testing supportive care interventions to improve the return-to-school experience of HCT survivors and ultimately their quality of life.

Transforming the nutrition care model for infants with cystic fibrosis: A qualitative study of clinicians' perspectives.

Clinician perspectives may inform health service strategies to meet optimal nutrition needs for infants with cystic fibrosis (CF). We conducted a qualitative study with CF-specialized dietitians (registered dietitians [RDs]) and physicians between July to December 2020 to characterize the current state of infant nutrition care delivery and organize input into a conceptual model to inform CF care program strategies. Among 42 participants, 36 completed survey responses and 6 completed interviews; 93% were RDs. Three global themes emerged in the current care model: nutrition management, family centered connections, and collaborative care delivery. Within nutrition management, clinicians emphasized providing education, setting goals, and maintaining adequate follow-up with families. Under family centered connections, clinicians expressed the need to foster relationships with families and link families to resources for assistance to social stressors such as food insecurity. Collaborative care delivery for clinicians interviewed was defined by sharing expertise from across the interdisciplinary team. Based on the timing of this study, clinicians reported compelling examples for various modes of telehealth and home weight monitoring to facilitate and support these domains of nutrition care, including potential advantages for education, supporting family needs, and communication. We integrate these themes to propose a conceptual model to organize complementary in-person and telehealth activities and enhance quality infant CF nutrition care delivery. Future implementation can refine this model through testing of practical telehealth interventions to optimize nutrition outcomes for infants with CF.

Gender Discrimination and Reporting Experiences among Academic Pediatric Faculty: A Qualitative, Single-institution Study.

OBJECTIVE: Gender-harassment is well-described in academic medicine, including pediatrics. We explored academic pediatricians' qualitative descriptions of: 1) workplace gender-harassment; 2) its professional and emotional tolls; 3) barriers to and outcomes of reporting gender-harassment; and 4) tools to intervene. METHODS: We conducted a cross-sectional, anonymous, survey-based study within a single, large pediatrics department. Surveys included demographic items, validated measures to assess prevalence of gender-harassment, and optional, free-text boxes to elaborate. Here, we present the directed content analyses of free-text responses. Two trained qualitative researchers coded participant comments to identify types of gender-harassment, its impact, and participants' experiences reporting it. Final agreement between coders was outstanding (Kappa>0.9). A secondary, inductive analysis illustrated the emotional burdens of and opportunities to interrupt gender-harassment. RESULTS: Of 524 total faculty, 290 (55%) completed the survey and 144 (27% of total, 50% of survey-respondents) provided text-responses. This sub-cohort was predominantly white women >5 years on-faculty. Compared to the full cohort, sub-cohort participants had more commonly witnessed/experienced workplace-harassment; 92% of sub-cohort women and 52% of men endorsed fear of reporting it. Respondents described harassment by institutional staff (24% of respondents), patients/families (35%), colleagues (50%), supervisors/leadership (50%), and the system (63%). Women used stronger emotional descriptors than men (ie, "humiliated" vs "uncomfortable"). Only 19% of women (and no men) had reported witnessed/experienced harassment; 24% of those described a negative consequence and 95% noted that no changes were made thereafter. CONCLUSIONS: This single-center study suggests gender-harassment in academic pediatrics is common. Faculty feel fear and futility reporting it.

Seeking virtual support: Digital technology use in adolescent and young adults with advanced cancer.

BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.

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.

Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study.

BACKGROUND: To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary. METHODS: Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes in caregiver experience of caring for a child initiating dialysis were identified. RESULTS: Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: (1) parenting disrupted - caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child's diagnosis; (2) redefining parenting - caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive, communication with the medical team, and engaging in care plan development; and (3) leveraging dual identities - to positively impact their child's experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives, watching over their child's care, and preparing for future changes in their child's health. If caregivers' evolution was not nurtured and enabled, acute fluctuations in their child's care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child's care. CONCLUSIONS: Improving delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family's changing experience of kidney disease. A higher resolution version of the Graphical abstract is available as Supplementary information.

"It Just Kind of Feels Like a Different World Now:" Stress and Resilience for Adolescents With Type 1 Diabetes in the Era of COVID-19.

Purpose: The COVID-19 pandemic has been a major stressor for adolescents. Given the unique implications of the pandemic for youth with type 1 diabetes (T1D), who already navigate multiple stressors as a function of their chronic condition, we aimed to describe the impact of the pandemic on adolescents with T1D and describe their coping strategies and resilience resources. Research Method: In a 2-site (Seattle WA, Houston TX) clinical trial of a psychosocial intervention targeting stress/resilience, adolescents 13-18 years old with T1D ≥ 1 year and elevated diabetes distress were enrolled August 2020 - June 2021. Participants completed a baseline survey about the pandemic, including open-ended questions about the effects of the pandemic, what was helping them navigate, and how it impacted T1D management. Hemoglobin A1c (A1c) was extracted from clinical records. Free text responses were analyzed using an inductive content approach. Survey responses and A1c were summarized using descriptive statistics and associations were assessed by Chi-squared tests. Results: Adolescents (n=122) were 56% female. 11% of adolescents reported diagnosis of COVID-19 and 12% had a family member/other important person die from COVID-19 complications. Adolescents described Social Relationships, Personal Health/Safety Practices, Mental Health, Family Relationships, and School to be primary areas affected by COVID-19. Helpful resources included: Learned Skills/Behaviors, Social Support/Community, and Meaning-Making/Faith. Among participants indicating that the pandemic had an impact on their T1D management (n=35), the most commonly described areas were: Food, Self-Care, Health/Safety, Diabetes Appointments, and Exercise. Compared to adolescents who reported minimal difficulty managing T1D during the pandemic (71%), those reporting moderate to extreme difficulty (29%) were more likely to have A1C ≥ 8% (80% vs. 43%, p<.01). Conclusions: Results underscore the pervasive impact of COVID-19 on teens with T1D across multiple major life domains. Their coping strategies aligned with stress, coping, and resilience theories and suggest resilient responses in the face of stress. Despite experiencing pandemic-related stressors in many areas, diabetes-related functioning was relatively protected for most teens, highlighting their diabetes-specific resilience. Discussing the pandemic impact on T1D management may be an important focus for clinicians, especially for adolescents with diabetes distress and above-target A1C.

A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study.

BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC. METHODS: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively. RESULTS: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. CONCLUSIONS: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. LAY SUMMARY: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.

Tincture of Time: The Evolution of Goals in Adolescents and Young Adults with Cancer.

Purpose: A diagnosis of cancer often derails an individual's goals. The purpose of this mixed-methods analysis was to describe the evolution of adolescent and young adult (AYA)-reported goals in the year after a diagnosis of new or advanced cancer. Methods: As part of the Promoting Resilience in Stress Management (PRISM) phase 2 randomized controlled trial, AYAs with cancer (ages 12-25 years) were asked at baseline, 6 months, and 12 months: "Please give an example of a goal you hope to accomplish over the next month/year." We used content analysis to categorize goals as follows: life milestones, physical health, mental/emotional health, cancer specific, and hobbies/interests. We summarized goal categories at each time point: for the entire cohort, by baseline diagnosis status (new vs. advanced cancer), treatment status (on-therapy vs. off-therapy), and baseline health-related quality of life (high vs. low). Results: Eighty-six participants completed the study and were included in the analysis (control: n = 41, PRISM: n = 45); 69 reported their goals at 6 months, and 54 at 12 months. Participants submitted a total of 169 goals at baseline, 148 at 6 months, and 126 at 12 months. At baseline, cancer-specific goals were most common for the short-term (35%), whereas milestone goals were most common for the long-term (46%). At 6 months, milestone goals were most common in both short- (38%) and long-term (51%) categories. A similar pattern was seen at 12 months. Conclusion: AYAs' goals change over the first year of their cancer experience, with a shift in short-term goals from cancer-specific goals at baseline to milestone goals at later time points. ClinicalTrials.gov (NCT02340884).

Stuck Moments and Silver-Linings: The Spectrum of Adaptation Among Non-Bereaved and Bereaved Parents of Adolescents and Young Adults With Advanced Cancer.

CONTEXT: With advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death. OBJECTIVE: To examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer. METHODS: Qualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches. RESULTS: Of the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning. CONCLUSION: Adaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death.

"It's My Job to Love Him": Parenting Adolescents and Young Adults With Advanced Cancer.

BACKGROUND: Parents of adolescents and young adults (AYAs) with serious illness experience enormous stress as they navigate their child's illness. In this study, we aimed to elucidate AYA parental perspectives on the advanced cancer experience, including what parents find challenging and their sources of strength. METHODS: Parents of AYAs aged 14 to 24 years old being treated for recurrent or refractory advanced cancer at a large academic center completed demographic surveys and 1:1 semi-structured interviews between December 2017 and July 2018. Conventional content analysis was used by 2 coders to analyze transcriptions, with a third reviewer adjudicating. Thematic networks analysis was then used to extrapolate basic and organizing themes. RESULTS: A total of 22 parents participated. The majority were female, non-Hispanic, and married; 23% (n = 5) were from racial minority groups. We identified 3 organizing themes related to navigating parents' experiences: (1) what we do to love our child, (2) what challenges us, and (3) how we keep our heart focused on what matters most. Despite substantial uncertainty about their child's future, parents endorsed growth and gratitude as they focused on the ways they showed love for their child during this difficult time. CONCLUSIONS: Parents of AYAs with advanced cancer experience many parenting challenges, elucidating some of the vulnerabilities and magnifying the sources of strength among parents of children transitioning to adulthood during serious illness. This research has important implications for how we build programs that support and sustain parents' well-being during their child's serious illness.

Defining a "Good Death" in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers.

Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a "good" death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of "good" pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.

Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial.

BACKGROUND: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies learned during the trial's conduct. METHODS: We summarized data from the medical record and staff field notes regarding reasons for participation/non-participation. We conducted two focus groups with study staff; directed content analyses identified strategies for success. RESULTS: 92 AYAs enrolled (77% of approached; n = 50 Usual Care (control), n = 49 PRISM (intervention)). In eligible families who declined participation (n = 22 AYAs, n = 8 parents), the AYAs more commonly had advanced cancer (n = 11 (37%) declined vs. n = 25 (26%) enrolled). AYA reasons for non-enrollment were predominantly "not interested"; parents worried participation was "too burdensome." Staff strategies for accrual included having significant time to introduce the study and underscoring a desire to learn from the patient. After enrollment, AYAs who discontinued participation were more commonly assigned to control (n = 5 (10%) control vs. n = 2 (4%) intervention). Only n = 1 AYA chose to discontinue participation after receiving the intervention. CONCLUSIONS: Efforts to engage AYAs prior to and during studies may help with accrual and retention.