The Concept of Double Protection in the Childhood Cancer Context.

BACKGROUND: The concept of double protection is used to describe communication avoidance used by parents and their child or adolescents with cancer in attempts to protect the other against disease-related stress and emotions, resulting from communication about the cancer, its treatment, and thoughts. This concept has received limited attention in the research literature. OBJECTIVES: The aims of this concept analysis are to (1) explore its defining characteristics, applicability, and utility, (2) spotlight the concept and increase awareness and interest among healthcare providers and researchers, and (3) provide a direction for future interventions to improve parent-child communication in the childhood cancer context. METHODS: Rodgers' Evolutionary Concept Analysis was used, and the findings from a study that explored the communication experience of Korean adolescents with cancer and their parents were integrated. RESULTS: This study explored the attributes, antecedents, consequences, and related terms. The following attributes were extracted: intention to protect, bidirectional, and absence of parent-child communication at a deeper level. CONCLUSION: Clarification of the concept of double protection provides insight into the concept as a barrier to engagement in parent-child communication and supports the significance of double protection in the childhood cancer context. IMPLICATIONS FOR PRACTICE: There is a need for increased awareness of the challenges and dangers inherent in family communication avoidance, double protection. In order to address the issue, developing developmentally appropriate and valid clinical assessment tool and interventions are required. More research on the evidence-based benefits of effective parent-child communication is also required.

Understanding Processes, Outcomes, and Contexts in Medication Adherence: The Medication Adherence Context and Outcomes (MACO) Framework.

Poor medication adherence is a significant problem, yet interventions to improve it have been largely ineffective. Existing ecological models indicate that adherence is multi-dimensional; however, they do not reflect understanding of context-specific processes and how they lead to adherence outcomes. A framework that reflects context-specific processes is important because it could be used to inform context-specific intervention delivery and measure associated adherence outcomes. The purpose of this paper is to describe the Medication Adherence Context and Outcomes (MACO) framework, which includes contexts (ie, clinics, pharmacies, and home) and context-specific processes (ie, shared decision-making, prescription filling strategies, home medication management) that lead to adherence outcomes (initiation, implementation, discontinuation, and persistence). The Medication and Adherence Contexts and Outcomes (MACO) framework was iteratively developed between 2015 and 2018 based on theory, practice, and research and combining patient experience journey mapping to chronologically describe the environmental contexts and actions (processes) that occur within the contexts and how they contribute to medication adherence as outcome. The three distinct yet interrelated contexts described in the MACO framework are 1) clinical encounters, 2) pharmacy encounters, and 3) day-to-day home management. Within these contexts are specific medication management actions that occur (processes) in order to produce adherence-related outcomes (initiation, implementation, and discontinuation/persistence). The MACO framework distinguishes context-specific processes and outcomes. The MACO framework may be useful to understand at which point(s) along the continuum people experience problems with managing medications. This understanding is potentially useful for developing and delivering context-specific interventions that are based on processes that underlie nonadherence and selecting adherence measures appropriate for the contexts.

Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study.

BACKGROUND: Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians' capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients' spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. METHODS: Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants' skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. RESULTS: Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants' ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). CONCLUSIONS: Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members' capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.

Randomized Clinical Trial of a Self-care and Communication Intervention for Parents of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From the Children's Oncology Group.

BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life. OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention. METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data collection occurred at baseline, 2 weeks post intervention (T2), and 90 days post intervention (T3). RESULTS: There were no significant between-group differences on primary outcomes for parents or AYAs. We did find significant differences favoring the parent intervention group on parenting confidence at T2 and marginally better outcomes for family adaptability/cohesion at T3. Both groups exhibited significant within-group improvement for parent distress (state anxiety, T3; perceived stress, T2 and T3; mood, T3), state anxiety (T2) intervention only, and family strengths control group only. Qualitative data demonstrate the parent intervention raised self-awareness and parent confidence in the short term. CONCLUSION: Parents found their intervention helpful. Absence of significant results may be due to short intervention duration, need for tailored content, underpowered sample, and potential indirect parent benefit from AYA participation in TMV. The parent intervention did not provide an indirect benefit for AYAs. IMPLICATIONS FOR NURSING: Parents identified their own need for communication and support from nurses. Nurses can optimize AYA care by attending to parent needs through supportive listening and encouraging self-care.

Triangulation approach to developing, evaluating, and applying the evolving theory of adolescent acceptance of asthma.

Acceptance is a term used by healthcare professionals regarding patients' psychosocial adjustment to chronic conditions. This paper describes a triangulation approach, applied over 25 years, to develop and evaluate a theory of adolescent acceptance of asthma. The theory was used to guide the development and evaluation of an education and counseling program focused on fostering acceptance. The approach was effective in (a) defining acceptance and isolating its attributes; (b) identifying its antecedents and consequences, and specifying relationships among them; (c) revealing overlooked variables and augmenting theory; and (d) using theory to guide development and evaluation of the self-management program.

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).

Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.

BACKGROUND: Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China. METHOD: Ten parents, recruited in central China using purposive sampling, participated in face-to-face, in-depth interviews using Haase's adaptation of Colaizzi's phenomenological method. RESULTS: Five theme categories were identified: (a) The Cancer Diagnosis as a Terrible Disaster-The Sky is Falling, (b) Fighting the Beast, (c) Putting on a Happy Face and Other Coping Strategies, (d) Diagnosis Disclosure: If We Tell and How to Tell, and (e) Hope-Filled Expectations: Returning to Normal Life. CONCLUSION: Parents put their child's health as their top priority. They strive to manage uncertainty about prognosis and cope with enormous pressures caused by children's suffering, financial burden, and stigma. Parents also express their resilience and hope throughout their child's cancer journey. Support services to strengthen specific families' protective factors (i.e., family/community support, hope, and positive coping) are needed to foster resilience and quality of life. Health care professionals should systematically assess parents' needs, provide validated education materials, and implement tailored interventions across the cancer continuum. Public education and advocacy about cancer is also necessary to decrease cancer-related stigma, and provide financial aid and health care resources in pediatric oncology.

Active Music Engagement and Cortisol as an Acute Stress Biomarker in Young Hematopoietic Stem Cell Transplant Patients and Caregivers: Results of a Single Case Design Pilot Study.

This paper reports the results of a single case design pilot study of a music therapy intervention [the Active Music Engagement (AME)] for young children (age 3.51 to 4.53 years) undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers' perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.

The experiences of health-care providers during the COVID-19 crisis in China: a qualitative study.

BACKGROUND: In the early stages of the outbreak of coronavirus disease 2019 (COVID-19) in Hubei, China, the local health-care system was overwhelmed. Physicians and nurses who had no infectious disease expertise were recruited to provide care to patients with COVID-19. To our knowledge, no studies on their experiences of combating COVID-19 have been published. We aimed to describe the experiences of these health-care providers in the early stages of the outbreak. METHODS: We did a qualitative study using an empirical phenomenological approach. Nurses and physicians were recruited from five COVID-19-designated hospitals in Hubei province using purposive and snowball sampling. They participated in semi-structured, in-depth interviews by telephone from Feb 10 to Feb 15, 2020. Interviews were transcribed verbatim and analysed using Haase's adaptation of Colaizzi's phenomenological method. FINDINGS: We recruited nine nurses and four physicians. Three theme categories emerged from data analysis. The first was "being fully responsible for patients' wellbeing-'this is my duty'". Health-care providers volunteered and tried their best to provide care for patients. Nurses had a crucial role in providing intensive care and assisting with activities of daily living. The second category was "challenges of working on COVID-19 wards". Health-care providers were challenged by working in a totally new context, exhaustion due to heavy workloads and protective gear, the fear of becoming infected and infecting others, feeling powerless to handle patients' conditions, and managing relationships in this stressful situation. The third category was "resilience amid challenges". Health-care providers identified many sources of social support and used self-management strategies to cope with the situation. They also achieved transcendence from this unique experience. INTERPRETATION: The intensive work drained health-care providers physically and emotionally. Health-care providers showed their resilience and the spirit of professional dedication to overcome difficulties. Comprehensive support should be provided to safeguard the wellbeing of health-care providers. Regular and intensive training for all health-care providers is necessary to promote preparedness and efficacy in crisis management. FUNDING: National Key R&D Program of China, Project of Humanities and Social Sciences of the Ministry of Education in China.

Predictors of resilience among adolescent disaster survivors: A path analysis.

AIMS: To investigate a theoretical model of risk and protective factors to predict resilience among adolescent disaster survivors. DESIGN: A cross-sectional study. METHODS: Parent's consent and student's informed consent forms were distributed at seven schools in a postdisaster setting (Yogyakarta, Indonesia) between July-October 2017; those who agreed to participate had to complete the self-reported questionnaires. Demographic data were evaluated using descriptive statistical analyses and relationships among study variables were determined using a path analysis. RESULTS: Results of the model test analysis indicated that six of the seven the hypothesized paths were supported by data from our samples and demonstrated significance on the path coefficients (p < .01). One path coefficient on the association between posttraumatic stress disorder (PTSD) symptoms and resilience was found to be insignificant (ß = -0.002, p > .05). However, overall, our hypothesized model was retained, indicating empirical support and adequate model's fit indices for the theoretical model. CONCLUSIONS: Overall, the findings demonstrated the predictive roles of risk and protective factors in adolescent disaster survivors' resilience. IMPACT: Resilience is known to be an important concept in recovering from long-term impacts following a disaster in adolescent populations, but its risk and protective factors have not been adequately explored. We found that PTSD symptoms influenced how adolescent disaster survivors developed defensive coping, social support had an indirect effect on resilience through courageous coping and defensive coping acted as a mediator between PTSD symptoms and courageous coping. These findings can help mental health professionals (i.e., community mental health nurses) promote intervention strategies to enhance resilience through improving coping skills in adolescent populations exposed to a disaster.

A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer.

CONTEXT: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). OBJECTIVES: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. METHODS: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. RESULTS: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). CONCLUSION: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents.

Cortisol as an Acute Stress Biomarker in Young Hematopoietic Cell Transplant Patients/Caregivers: Active Music Engagement Protocol.

Objective: Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. Design: The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Setting/Location: Pediatric inpatient HSCT unit. Subjects: Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. Intervention: AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Outcome Measures: Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Results: Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Conclusions: Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.

Development and Psychometric Evaluation of the Connectedness with Health Care Providers Scale for Adolescents and Young Adults with Cancer.

Purpose: Purposes of this study were to (1) develop an instrument of connectedness with health care providers (HCPs) for adolescents and young adults (AYAs) with cancer (ages 13 to 21 years); (2) evaluate the content validity of the instrument through expert panels; (3) assess the dimensionality of the instrument; (4) evaluate the internal consistency reliability of the instrument; and (5) evaluate the convergent and discriminant validity of the instrument through hypothesis testing. Methods: The Connectedness with HCPs Scale (C-HCPS) was developed and evaluated in two phases. Phase I involved generating items, having two expert panels (AYAs and clinicians; n = 13) evaluate the items for content validity, and pretesting the instrument before pilot testing (n = 6). In phase II, the psychometric properties of the instrument (dimensionality, internal consistency reliability, and convergent/discriminant validity) were evaluated (n = 101). Results: The initial exploratory factor analysis revealed that the items separated into two separate instruments. In addition to the C-HCPS, a Disconnectedness with HCPs Scale (D-HCPS) was revealed. The C-HCPS contains 35 items and the D-HCPS contains 11 items. Exploratory factor analysis suggested a five-factor solution for the C-HCPS and a two-factor solution for the D-HCPS. Internal consistency reliability of the C-HCPS and D-HCPS was 0.964 and 0.881, respectively. Good evidence of convergent and discriminant validity was demonstrated through hypothesis testing. Conclusion: Findings indicate that the C-HCPS and D-HCPS are both reliable instruments with good evidence of convergent and discriminant validity. Further exploration of these instruments using confirmatory factor analysis in a larger sample is needed.

Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer.

This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

BACKGROUND: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs. OBJECTIVE: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment. METHODS: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method. RESULTS: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination. CONCLUSION: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority. IMPLICATIONS FOR PRACTICE: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents.

AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.

Improving recruitment and retention of adolescents and young adults with cancer in randomized controlled clinical trials.

Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.

Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers. METHODS: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers. RESULTS: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE. CONCLUSION: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents. IMPLICATIONS FOR PRACTICE: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste".

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.