Extracorporeal membrane oxygenation and paediatric palliative care in an ICU.

OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.

Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers.

OBJECTIVES: Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices. METHODS: Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized. RESULTS: Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers. SIGNIFICANCE OF RESULTS: Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

Symptoms and daily experiences reported by children with cancer using a game-based app.

PURPOSE: Mobile health (mHealth) resources, including apps, are emerging as resources to support children in tracking symptoms and other health-related data. The purpose of this study was to describe symptoms and daily experiences reported by elementary school-age children receiving treatment for cancer using the newly developed Color Me Healthy app. DESIGN AND METHODS: Participants in this descriptive study were children 6-12 years of age, who were receiving cancer treatment at a free-standing children's hospital in the Intermountain West of the United States. Children were requested to use the app for at least five days between clinical visits. Children's app-reported data were extracted from individual user accounts for analysis. Quantitative data were summarized descriptively. Qualitative data were summarized using qualitative content analysis. RESULTS: Nineteen children (6-12 years; median 8 years; 7 females) completed 107 days of app use. All children reported symptoms at least once, and 14 reported at least one day with a symptom of moderate or greater severity. Daily experiences reported through the app reflected children's engagement in usual childhood experiences while also describing life with cancer, including symptoms. CONCLUSIONS: Elementary school-age children are capable of self-reporting symptoms using a symptom reporting app, providing preliminary evidence for the potential benefits and clinical relevance of mHealth resources to support health outcomes within this population. PRACTICE IMPLICATIONS: Clinicians should anticipate and support ongoing symptom management needs between clinical visits. Children's self-reported data can promote a person-centered approach to symptom assessment and management.

Social support and siblings of children with cancer: A scoping review.

OBJECTIVE: Social support is essential in healthy adjustment to life stressors. This scoping review examines how social support has been conceptualized, operationalized, and studied among siblings of children with cancer. Gaps in the current literature are identified, and future research directions are proposed. METHODS: A rigorous systematic scoping review framework guided our process. Medline, Embase, CINAHL, PsycINFO, and Scopus were searched for literature regarding social support and siblings of children with cancer. After screening, 57 articles were identified (n = 26 quantitative, n = 21 qualitative, and n = 10 multi-method) and their content extracted for summarization. RESULTS: The majority of studies (n = 43, 75.4%) were descriptive; 14 (24.6%) included interventions, and of those, four were experimental. Few studies used a clearly defined theoretical framework, or validated tools to measure social support. Studies explored perceived social support needs of siblings, the provision and availability of formal support through interventions and related outcomes, and informal family social supports. A variety of support types were found to be helpful to siblings in different ways. CONCLUSIONS: Social support is a prevalent topic in the literature regarding siblings of children with cancer. It is unclear what types of support are most important due to how it has been conceptualized and measured. Despite some methodological limitations, greater levels of social support have been linked to better adaptation among siblings of children with cancer. Future work is warranted to identify the most beneficial types of support for siblings based on their age, developmental stage, and the cancer trajectory.

Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents.

BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.

Illness, Social Disadvantage, and Sexual Risk Behavior in Adolescence and the Transition to Adulthood.

This study investigated the influence of illness on sexual risk behavior in adolescence and the transition to adulthood, both directly and through moderation of the impact of social disadvantage. We hypothesized positive effects for social disadvantages and illness on sexual risk behavior, consistent with the development of faster life history strategies among young people facing greater life adversity. Using the first two waves of the National Longitudinal Study of Adolescent to Adult Health, we developed a mixed-effects multinomial logistic regression model predicting sexual risk behavior in three comparisons: risky nonmonogamous sex versus safer nonmonogamous sex, versus monogamous sex, and versus being sexually inactive, by social characteristics, illness, interactions thereof, and control covariates. Multiple imputation was used to address a modest amount of missing data. Subjects reporting higher levels of illness had lower odds of having safer nonmonogamous sex (OR = 0.84, p < .001), monogamous sex (OR = 0.82, p < .001), and being sexually inactive (OR = 0.74, p < .001) versus risky nonmonogamous sex, relative to subjects in better health. Illness significantly moderated the sex (OR = 0.88, p < .01), race/ethnicity (e.g., OR = 1.21, p < .001), and childhood SES (OR = 0.94; p < .01) effects for the sexually inactive versus risky nonmonogamous sex comparison. Substantive findings were generally robust across waves and in sensitivity analyses. These findings offer general support for the predictions of life history theory. Illness and various social disadvantages are associated with increased sexual risk behavior in adolescence and the transition to adulthood. Further, analyses indicate that the buffering effects of several protective social statuses against sexual risk-taking are substantially eroded by illness.

Prevalence of specialised palliative care consultation for eligible children within a paediatric cardiac ICU.

OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.

Palliative Care in Children With Heart Disease Treated in an ICU.

OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.

Mining twitter to explore the emergence of COVID-19 symptoms.

BACKGROUND: The Centers for Disease Control and Prevention (CDC) in United States initially alerted the public to three COVID-19 signs and symptoms-fever, dry cough, and shortness of breath. Concurrent social media posts reflected a wider range of symptoms of COVID-19 besides these three symptoms. Because social media data have a potential application in the early identification novel virus symptoms, this study aimed to explore what symptoms mentioned in COVID-19-related social media posts during the early stages of the pandemic. METHODS: We collected COVID-19-related Twitter tweets posted in English language between March 30, 2020 and April 19, 2020 using search terms of COVID-19 synonyms and three common COVID-19 symptoms suggested by the CDC in March. Only unique tweets were extracted for analysis of symptom terms. RESULTS: A total of 36 symptoms were extracted from 30,732 unique tweets. All the symptoms suggested by the CDC for COVID-19 screening in March, April, and May were mentioned in tweets posted during the early stages of the pandemic. DISCUSSION: The findings of this study revealed that many COVID-19-related symptoms mentioned in Twitter tweets earlier than the announcement by the CDC. Monitoring social media data is a promising approach to public health surveillance.

Yours, Mine, and Ours: A Qualitative Analysis of the Impact of Type 1 Diabetes Management in Older Adult Married Couples.

OBJECTIVE: The purpose of this study was to understand perceptions of diabetes management responsibilities and the impact of diabetes on day-to-day activities in older adulthood for individuals with type 1 diabetes and their spouses. DESIGN AND METHODS: This qualitative content analysis used a constant-compare approach to analyze individual interviews conducted with older adults and their spouses. People with type 1 diabetes (PWD) and their spouses were interviewed regarding how they coped or dealt with diabetes, what activities they carried out or avoided because of diabetes, and how they appraised diabetes as an individual or shared problem. RESULTS: Participants (n = 52) included 26 older adults with diabetes (mean age 69 years, SD 2.56 years; 38.5% female) and their spouses (mean age 68 years, SD 5.11 years; 61.5% female). Half of the PWD (50%) and the majority of spouses (76.9%) appraised diabetes as a shared issue. Five themes emerged from the interview data: 1) Perceptions pf PWD of spouse involvement in diabetes care, 2) PWD underestimated the impact of diabetes on their spouse's daily lives, 3) gendered nature of spouses supporting diabetes management, 4) evolution of diabetes and the relationship across developmental time, and 5) differences in diabetes management among couples. CONCLUSION: Older adults with type 1 diabetes and their spouses have different perspectives regarding diabetes support and responsibility and may not always realize what support is being provided or needed to optimize effective diabetes management. Advancing age with or without diabetes complications may necessitate that spouses provide diabetes support. Diabetes management training for spouses would likely be helpful.

Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy.

PURPOSE: Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool. METHODS: The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms. RESULTS: Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take … or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy. CONCLUSION: AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies.

Cancer Survivors' and Care Partners' Audio Diaries on Stress and Social Support Resources During the COVID-19 Pandemic.

OBJECTIVES: To describe cancer survivors' and care partners' perceived stress and social support during the COVID-19 pandemic and assess the feasibility of audio diaries for assessing role-related needs and resources. METHODS: Participants (N = 51; n = 28 survivors, n = 23 care partners) recorded three monthly audio diaries reporting stress and support experiences. Diaries were transcribed and content-analyzed using a hybrid approach. Stress-related content was inductively coded, and social support content was deductively coded by type (instrumental, information, emotional, companionship, appraisal; κ = 0.75) then inductively coded. Descriptive statistics summarized sociodemographic data and compared coding frequencies by role. We developed narrative summaries of stress and support categories and selected quotes for contextual detail. RESULTS: Cancer-related stressors were most prevalent (28.8%), followed by work (26.8%), family (23.1%), social isolation (13.4%), and finances (8.0%). While no significant difference in reporting frequency was observed between roles, cancer-related stress was more prevalent for survivors while work-related stress was mentioned more by care partners. Emotional support was the most prevalent support type (32.1%), followed by companionship (25.3%), appraisal (17.9%), instrumental (16.67%), and informational support (8%). Survivors reported more appraisal support than care partners (χ2 = 6.48, df = 1, P = .011) and more support for self-care, while care partners expressed more other-oriented concerns and focused more on managing responsibilities and interactions outside the household. CONCLUSIONS: The pandemic complicated and intensified role-based stressors already present in the survivorship context. Our findings highlight the importance of informal social support networks, particularly when access to formal services is limited, and suggest that audio diaries can be an effective tool for assessing support needs and resources. IMPLICATIONS FOR NURSING PRACTICE: Nurses and healthcare providers should tailor social support assessments to address the distinct support needs and individual resources of cancer survivors and their care partners. This is especially critical in contexts that limit access to care and formal services.

Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process.

Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.

Salud Latina: feasibility of a synchronous online chat for latinos at risk for type 2 diabetes.

This study examined the feasibility of Salud Latina, a weekly synchronous online chat intervention, aimed at engaging Latinos in diabetes prevention conversations. Participants were Latino English- and Spanish-speaking individuals. Salud Latina comprised of six synchronous weekly online chats moderated by bilingual Latina moderators trained in diabetes and online engagement. Online chats used open-ended questions. We assessed feasibility, acceptability, and satisfaction of the intervention and qualitatively analyzed the chats to identify barriers and facilitators to healthy behaviors and identify types of support exchanged. Participants (N = 20) were mostly female and English/Spanish bilingual and 80% completed at least four chats. Salud Latina was acceptable, feasible and highly satisfactory. Four themes were identified: (1) barriers to engaging in healthy behaviors, (2) facilitators of healthy behaviors, (3) Salud Latina provides a community of support, and (4) the need to build a Latino culture of health. Participants recognized the importance of engaging in healthy behaviors to prevent or delay T2D. Findings provide insight in how a synchronous online chat intervention could be used to build a social media community within a Latino population to support healthy behaviors. Future research could explore combining synchronous online chats with in-person community or family-level interventions.

Online Experiences, Internet-Fostered Connection, Resilience, and Adjustment Among Adolescent Siblings of Children With Cancer.

BACKGROUND: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience. OBJECTIVE: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer. METHODS: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling. RESULTS: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience. CONCLUSIONS: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment. IMPLICATIONS FOR PRACTICE: Efforts should be made to preserve and foster resilience among siblings who use social media for support.

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease.

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit ( n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies ( n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

Technology-Mediated Support Among Siblings of Children with Cancer.

Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample (N = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.

Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.

The Social Networks and Social Support of Siblings of Children with Cancer.

Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12-17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings' support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.

Feasibility, usability, and acceptability of personalized web-based assessment of social network and daily social support interactions over time.

PURPOSE: The purpose of this study was to test the feasibility, usability, and acceptability of implementing a web-based method for collecting social network and longitudinal daily interaction data from cancer survivors and their caregivers. METHODS: Young adult and sexual/gender minority cancer survivors and their informal caregivers were recruited as dyads. Feasibility data, including enrollment and retention, were captured. Individual social network data were collected at baseline and used to individualize daily electronically delivered surveys assessing characteristics of daily social support-related interactions with identified network members for 14 days. Follow-up questionnaires assessing usability and exit interviews assessing acceptability were completed at the end of the 2-week study period. RESULTS: Fourteen survivor-caregiver dyads (28 individual participants) were enrolled and completed all baseline and final measures. Participants completed 85.2% of daily diary reports and reported excellent usability ratings. Acceptability was also high. In qualitative interviews, participants reported enjoying the daily reflection on social support facilitated by our methods. CONCLUSIONS: Our method has been shown to be highly feasible, usable, and acceptable. IMPLICATIONS FOR CANCER SURVIVORS: Developing better data collection tools can lead to better understanding of the social support cancer survivors and their caregivers receive, and how the social network structure facilitates or creates barriers to accessing this support.