A Morning Bright Light Therapy Intervention to Improve Circadian Health in Adolescent Cancer Survivors: Methods and Preliminary Feasibility.

Circadian rhythm disturbances are common among children with cancer, and are associated with poor health outcomes. Social zeitgeber theory suggests that intervening in the cascade of events that disrupt circadian rhythms may improve health outcomes. Light, most potently sunlight, is a "zeitgeber," or environmental cue instrumental in maintaining entrainment of circadian rhythms. Bright white light (BWL) therapy, a proxy for sunlight, has been used successfully to prevent deterioration of circadian rhythms in adult cancer patients, and to reentrain these rhythms in adolescents with circadian rhythm disorders. This study aimed to develop and assess preliminary feasibility of a BWL therapy intervention for supporting circadian health of adolescent cancer survivors. We hypothesized that adolescents could independently manage BWL in their home, coordinated by nurses using a mail-, phone- and internet-based format, with minimal side effects. Adolescents were instructed to use BWL for 30 minutes daily on awakening, for 28 days. Actigraphs, measuring the circadian activity rhythms of sleep and wake, were worn for 7 days at baseline and Week 4. Adverse events were screened serially. Analyses were descriptive and nonparametric. Eight adolescents participated. On average, BWL was used on 61% of days, for 15 minutes per day. Adverse events were generally mild, although one participant discontinued BWL due to persistent BWL-related nausea. This nurse-guided remote BWL therapy intervention in adolescent cancer survivors demonstrated preliminary feasibility. Future studies with larger samples are required to verify the feasibility of this study, and to determine its safety and effectiveness in supporting circadian activity rhythms.

Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.

The Influence of Parents' Religiosity or Spirituality on Decision Making for Their Critically Ill Child: An Integrative Review.

Background: Religion and/or spirituality are important values for many parents of critically ill children; however, how religion and/or spirituality may influence which treatments parents accept or decline for their child, or how they respond to significant events during their child's illness treatment, remains unclear. Objective: To summarize the literature related to the influence of parents' religiosity or spirituality on decision making for their critically ill child. Design: Integrative review, using the Whittemore and Knafl approach. Setting/Subjects: Data were collected from studies identified through PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Databases were searched to identify literature published between 1996 and 2016. Results: Twenty-four articles of variable methodological quality met inclusion criteria. Analysis generated three themes: parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness in the experience of decision making. Conclusion: This review suggests that parents' religiosity and/or spirituality is an important and primarily positive influence on their decision making for a critically ill child.

Mindfulness-Based Stress Reduction and Group Support Decrease Stress in Adolescents with Cardiac Diagnoses: A Randomized Two-Group Study.

Adolescents with cardiac diagnoses face unique challenges that can cause psychosocial distress. This study compares a Mindfulness-Based Stress Reduction (MBSR) program to a video online support group for adolescents with cardiac diagnoses. MBSR is a structured psycho-educational program which includes yoga, meditation, cognitive restructuring, and group support. A published feasibility study by our group showed significant reduction in anxiety following this intervention. Participants were randomized to MBSR or video online support group, and completed measures of anxiety, depression, illness-related stress, and coping pre- and post-6-session interventions. Qualitative data were obtained from post-intervention interviews. A total of 46 teens participated (mean 14.8 years; 63% female). Participants had congenital heart disease and/or cardiac device (52%), or postural orthostatic tachycardia syndrome (48%). Illness-related stress significantly decreased in both groups. Greater use of coping skills predicted lower levels of depression in both groups post-study completion. Higher baseline anxiety/depression scores predicted improved anxiety/depression scores in both groups. Each group reported the benefits of social support. The MBSR group further expressed benefits of learning specific techniques, strategies, and skills that they applied in real-life situations to relieve distress. Both the MBSR intervention and video support group were effective in reducing distress in this sample. Qualitative data elucidated the added benefits of using MBSR techniques to manage stress and symptoms. The video group format is useful for teens that cannot meet in person but can benefit from group support. Psychosocial interventions with stress management techniques and/or group support can reduce distress in adolescents with cardiac diagnoses.

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.

BACKGROUND: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. AIM: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors. DESIGN: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology. DATA SOURCES: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. RESULTS: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality. CONCLUSION: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.

Policy brief: the Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life.

The Institute of Medicine's 2014 report Dying in America: Improving quality and honoring individual preferences near the end of life provides recommendations for creating transformational change in the models of end-of-life care delivery, clinician-patient communication, and advance care planning; improving professional education, reforming policies, and payment systems; and engaging and educating the public toward high-quality, coordinated, and comprehensive care that is person centered and family oriented. This article provides a policy brief of this recently released report. The role of nursing in advancing these recommendations is discussed.

Establishing Feasibility of Early Palliative Care Consultation in Pediatric Hematopoietic Stem Cell Transplantation.

Children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) encounter a number of distressing physical symptoms and existential distress but may not be afforded timely access to palliative care services to help ameliorate the distress. This feasibility study investigated the acceptability and outcomes of early palliative care consultation to promote comfort in this population. A longitudinal, descriptive cohort design examined both provider willingness to refer and willingness of families to receive palliative care interventions as well as satisfaction. Feasibility was demonstrated by 100% referral of eligible patients and 100% of patient and family recruitment (N = 12). Each family received 1 to 3 visits per week (ranging from 15 to 120 minutes) from the palliative care team. Interventions included supportive care counseling and integrative therapies. Families and providers reported high satisfaction with the nurse-led palliative care consultation. Outcomes included improvement or no significant change in comfort across the trajectory of HSCT, from the child and parental perspective. Early integration of palliative care in HSCT is feasible and acceptable to families and clinicians.

Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life.

OBJECTIVES: To describe selected components of pediatric palliative care from diagnosis to cure or end of life that combine to help nurses and other clinicians achieve goals of care for children with cancer and their families. DATA SOURCES: Published articles. CONCLUSION: Pediatric palliative care is characterized by diversity of care delivery models; effect of cancer on the family as the central focus of care; and consideration of culture, spirituality, communication, and ethical standards. End-of-life issues that can be anticipated by nurses and other clinicians include symptoms of cancer or its treatment, the importance of hopefulness, the relevance of trying to be a good parent in decision making, the meaning of legacy making of ill children, and family bereavement. IMPLICATIONS FOR NURSING PRACTICE: Direct nursing care strategies to achieve pediatric palliative care goals are vital to reduce child and family suffering from cancer.

"Trying to be a good parent" as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children.

PURPOSE: When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition. METHODS: In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent. RESULTS: Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer. CONCLUSION: The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.

Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination.

Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.

Sleep wake disturbances in people with cancer and their caregivers: state of the science.

PURPOSE/OBJECTIVES: To review the state of the science on sleep/wake disturbances in people with cancer and their caregivers. DATA SOURCES: Published articles, books and book chapters, conference proceedings, and MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and the Cochrane Library computerized databases. DATA SYNTHESIS: Scientists have initiated studies on the prevalence of sleep/wake disturbances and the etiology of sleep disturbances specific to cancer. Measurement has been limited by lack of clear definitions of sleep/wake variables, use of a variety of instruments, and inconsistent reporting of sleep parameters. Findings related to use of nonpharmacologic interventions were limited to 20 studies, and the quality of the evidence remains poor. Few pharmacologic approaches have been studied, and evidence for use of herbal and complementary supplements is almost nonexistent. CONCLUSIONS: Current knowledge indicates that sleep/wake disturbances are prevalent in cancer populations. Few instruments have been validated in this population. Nonpharmacologic interventions show positive outcomes, but design issues and small samples limit generalizability. Little is known regarding use of pharmacologic and herbal and complementary supplements and potential adverse outcomes or interactions with cancer therapies. IMPLICATIONS FOR NURSING: All patients and caregivers need initial and ongoing screening for sleep/wake disturbances. When disturbed sleep/wakefulness is evident, further assessment and treatment are warranted. Nursing educational programs should include content regarding healthy and disrupted sleep/wake patterns. Research on sleep/wake disturbances in people with cancer should have high priority.

Comparing the results of coagulation tests on blood drawn by venipuncture and through heparinized tunneled venous access devices in pediatric patients with cancer.

PURPOSE/OBJECTIVES: To compare the accuracy of three coagulation tests (prothrombin time [PT], activated partial thromboplastin time [aPTT], and fibrinogen [FBG]) performed on blood samples collected through heparinized tunneled venous access devices (TVADs) with those from venipuncture. DESIGN: Descriptive comparative with patients serving as their own controls. SETTING: Pediatric comprehensive care setting for children and adolescents experiencing catastrophic diseases. SAMPLE: 53 patients who had TVADs, had not received asparaginase during the previous 14 days, and had coagulation studies ordered. Patients ranged in age from 2-20 years (mean = 9.2 years, SD = 5). The most common diagnoses were neuroblastoma and acute myelocytic leukemia. METHODS: Blood was collected through TVADs within seconds of collection of the venipuncture sample. The first 3 ml of blood from a TVAD was discarded; the research nurse then drew three sequential samples of 3 ml each. Laboratory personnel were blinded to the source of all four samples until all analyses had been completed. MAIN RESEARCH VARIABLES: PT, aPTT, and FBG. FINDINGS: For all patients, results of PT, aPTT, and FBG tests on each of the three blood samples obtained through the TVAD differed significantly from results of the same tests on blood obtained by venipuncture. CONCLUSIONS: These findings indicate that neither a 6 ml, 9 ml, nor 12 ml discard from a heparinized TVAD is sufficient to yield clinically trustworthy PT, aPTT, or FBG values. IMPLICATIONS FOR NURSING: Nurses who have been persuaded by patients or parents to withdraw blood samples for coagulation indicators from a TVAD rather than from a venipuncture should have access to this research-based information that the three indicators, particularly aPTT, differ significantly from each other as to make it unreliable and potentially unsafe to sample blood from a TVAD to assess coagulation.