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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. Graphical abstract A higher resolution version of the Graphical abstract is available as Supplementary information, Author(s): Taylor R. House [sup.1] , Abby R. Rosenberg [sup.1] , Cortney T. Zimmerman [sup.2] , Krysta S. Barton [sup.3] , Aaron Wightman [sup.1] Author Affiliations: (1) grid.34477.33, 0000000122986657, Department [...]

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. Key message: This mixed-methods prospective cohort study suggests that uncertainty, advocacy, and vulnerability are sources of parental stress in the PICU. Most parents reported moderate stress at both PICU admission and discharge. One-third reported that their stress stayed the same or increased, despite their child's improving health. Themes/subthemes related closely to "good parent" attributes. [ABSTRACT FROM AUTHOR]

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: 16 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. [ABSTRACT FROM AUTHOR]

Social determinants of health (SDOH) affect quality of life. We investigated SDOH impacts on self-perceived resilience among people with adult congenital heart disease (ACHD). Secondary analysis of data from two complementary studies: a survey study conducted May 2021-June 2022 and a qualitative study conducted June 2020-August 2021. Resilience was assessed through CD-RISC10 score (range 0-40, higher scores reflect greater self-perceived resilience) and interview responses. Sociodemographic and SDOH (education, employment, living situation, monetary stability, financial dependency, area deprivation index) data were collected by healthcare record review and self-report. We used linear regression with robust standard errors to analyze survey data and performed a thematic analysis of interview data. Survey participants (N = 127) mean age was 42 ± 14 years; 51% were female, 87% white. ACHD was moderate (75%) or complex (25%); 41% functional class C or D. Resilience (mean 30 ± 7) varied by monetary stability: compared to people with difficulty paying bills, resilience was 15.0 points higher (95% CI: 6.9-23.1, p < 0.001) for people reporting having enough money and 14.2 points higher (95% CI: 5.9-22.4, p = 0.001) for those reporting just enough money. Interview participants' (N = 25) mean age was 32 years (range 22-44); 52% were female, 72% white. ACHD was moderate (56%) or complex (44%); 76% functional class C or D. Participants discussed factors affecting resilience aligned with each of the major SDOH, prominently, economic stability and healthcare access and quality. Financial stability may be important for supporting self-perceived resilience in ACHD. This knowledge can inform the development of resilience interventions for this population. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

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. The Promoting Resilience in Stress Management–Advanced Cancer (PRISM‐AC) program integrates advance care planning into an established resilience‐coaching program for adolescents and young adults with advanced cancer. PRISM‐AC is found to be feasible and highly acceptable, and this suggests opportunities for clinical care and future research. [ABSTRACT FROM AUTHOR]

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 staffwhocompleted 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population. Objective: We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention. Patients and Methods: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point. Setting/subjects: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma ( n = 8), acute leukemia ( n = 6), and lymphoma ( n = 3) completed 44 interviews with >100 hours of transcript-data. Results: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose. Conclusions: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes. [ABSTRACT FROM AUTHOR]