Pediatric Oncology Nursing

This study evaluates the effect of self-selected distracters (ie, bubbles, I Spy: Super Challenger book, music table, virtual reality glasses, or handheld video games) on pain, fear, and distress in 50 children and adolescents with cancer, ages 5 to 18, with port access or venipuncture. Using an intervention-comparison group design, participants were randomized to the comparison group (n = 28) to receive standard care or intervention group (n = 22) to receive distraction plus standard care. All participants rated their pain and fear, parents rated participant fear, and the nurse rated participant fear and distress at 3 points in time: before, during, and after port access or venipuncture. Results show that self-reported pain and fear were significantly correlated (P = .01) within treatment groups but not significantly different between groups. Intervention participants demonstrated significantly less fear (P < .001) and distress (P = .03) as rated by the nurse and approached significantly less fear (P = .07) as rated by the parent. All intervention parents said the needlestick was better because of the distracter. The authors conclude that distraction has the potential to reduce fear and distress during port access and venipuncture.

A nonpharmacological method can be an alternative or complement to analgesics. The aim of this study was to evaluate if music medicine influences pain and anxiety in children undergoing lumbar punctures. A randomized clinical trial was used in 40 children (aged 7-12 years) with leukemia, followed by interviews in 20 of these participants. The participants were randomly assigned to a music group (n = 20) or control group (n = 20). The primary outcome was pain scores and the secondary was heart rate, blood pressure, respiratory rate, and oxygen saturation measured before, during, and after the procedure. Anxiety scores were measured before and after the procedure. Interviews with open-ended questions were conducted in conjunction with the completed procedures. The results showed lower pain scores and heart and respiratory rates in the music group during and after the lumbar puncture. The anxiety scores were lower in the music group both before and after the procedure. The findings from the interviews confirmed the quantity results through descriptions of a positive experience by the children, including less pain and fear.

It is well established that pediatric oncology is perceived as a setting that is personally and professionally demanding. Many sources acknowledge the development of conditions, such as burnout, compassion fatigue and vicarious traumatization, as a result of being continuously subjected to highly stressful circumstances in a professional capacity. There are a myriad of individual and collaborative factors that are known to mediate stress in the oncology setting. One such factor is resilience. The purpose of this literature review is to investigate what is known about coping and its relationship with resilience in assisting pediatric oncology nurses to manage work-related stressors. From the themes identified within the reviewed studies, it is clear that the applicability of resilience in pediatric oncology nursing has not been thoroughly investigated. The literature suggests that the presence of resilience among pediatric oncology nurses is possible. What is not known is whether there is a link between this resilience and ability to cope with the stressors of pediatric oncology.

The purposes of this study in children who underwent a cycle of myelosuppressive chemotherapy were to describe changes in symptom occurrence and severity during the chemotherapy cycle. Patients (N = 66) 10 to 18 years of age completed the Memorial Symptom Assessment Scale for 10-to 18-year-olds (MSAS 10-18) at the start of a chemotherapy cycle (T1) and weekly for the next 2 weeks (T2 and T3). More than 30% of children reported 10 or more symptoms at all 3 time points. Symptom occurrence trajectories were tested with multilevel logistic regression. In all, 6 symptoms (ie, fatigue, sadness, irritability, worrying, weight loss, sweating) showed a decreasing linear trend. Significant quadratic patterns of change were found for feeling drowsy, nausea, and vomiting. Changes in symptom severity over time were evaluated with multilevel negative binomial regression. No significant differences over time were found in any of the symptom severity scores on the MSAS. Children experienced a high number of symptoms at the initiation of a chemotherapy cycle that persisted over the subsequent 2 weeks.

The diagnosis and treatment of pediatric cancer can be associated with profound psychosocial changes in the life of young patients. Although nurses, physicians, and other health care professionals are important sources of support, psychosocial support is also available through parents, schools, and peers. This article presents a review of the literature on how parents, schools, and peers affect the coping and adjustment of young patients with cancer and critically reviews interventions directed at improving functioning in these areas. Special attention is paid to recent interventions that exploit technology such as video games, CD-ROMs, and the Internet to provide creative new forms of support for patients in pediatric oncology. Existing research on both technological and interpersonal forms of intervention and support shows promising results, and suggestions for further study are provided.

Fatigue in adults with cancer has received considerable attention as a trouble-some symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used qualitative methods to generate a ...

This pilot study aimed to determine the feasibility of providing massage to children with cancer to reduce symptoms in children and anxiety in parents. Twenty-three children/parent dyads were enrolled; 17 completed all data points. Children with cancer, ages 1 to 18 years, received at least 2 identical cycles of chemotherapy, and one parent, participated in the 2period crossover design in which 4 weekly massage sessions alternated with 4 weekly quiet-time control sessions. Changes in relaxation (heart and respiratory rates, blood pressure, and salivary cortisol level) and symptoms (pain, nausea, anxiety, and fatigue) were assessed in children; anxiety and fatigue were measured in parents. Massage was more effective than quiet time at reducing heart rate in children, anxiety in children less than age 14 years, and parent anxiety. There were no significant changes in blood pressure, cortisol, pain, nausea, or fatigue. Children reported that massage helped them feel better, lessened their anxiety and worries, and had longer lasting effects than quiet time. Massage in children with cancer is feasible and appears to decrease anxiety in parents and younger children.

Twenty-nine parents of children who had been diagnosed with various cancers were interviewed through long, semistructured interviews conducted via telephone by a mother whose daughter once had cancer. Parents usually began their narratives of the defining moments in the months, weeks, or days prior to the diagnosis. The authors report on parents' views about one of the defining moments in the stories. At the first level, we call this "communication issues" and include the following topics: communication at diagnosis, contradictions and confusion, getting the "right" amount of information, good and poor communication, feeling listened to, and errors in medical information. At another level, the way that parents talk about communications issues reflects an underlying paradox that parents whose children have cancer face: They are and feel responsible for their children, and yet they often lack knowledge, authority, and power in their dealings with the health care system and its medical care providers.

This study explores nurses' attitudes toward the discussion of fertility preservation (FP) with pediatric cancer patients and their families. A crosssectional survey was administered to attendees of a pediatric oncology conference. Of the 115 nurses who responded and comprised the study sample, most reported discussing risks of infertility or FP ≤ 50% of the time. The 3 attitudinal factors most commonly rated by nurses to influence discussion of FP are the potential of upsetting patients' families, that boys younger than 18 years should not be given erotic materials during semen collection, and difficulty locating FP facilities. The 3 patient factors most likely to encourage the discussion of FP are the patient being recently married or engaged, the patient asking about FP, and availability of patient education materials. While the results indicate that nurses do not regularly discuss FP with their patients, nurses perceive such discussion as being within their scope of practice. Therefore, with appropriate intervention, nurses may play a key role in facilitating discussions regarding FP with patients and families.

The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with nonparticipant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy, " "need for participation in care and treatment, " "need for a good relationship with the staff, " and "need for physical and emotional satisfaction. " The results indicate that the children needed their parents and the parents'presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment.

Using combined qualitative data from multiple case study interviews and an online survey, this study explored the impact of appearance change on 22 adolescents receiving cancer treatment aged 13 to 18 years and six of their parents. Data were analyzed using template analysis. Appearance changes were a major concern. Adolescents typically struggled to adapt to new experiences and concerns related to this highly sensitive issue. Many felt anxious and self-conscious and were reluctant to reveal appearance changes in public. These feelings were compounded by the negative reactions of others (e.g., staring, teasing, and inappropriate questioning), which sometimes lead to avoidance of social activity and threats of noncompliance. Parents of these children felt ill-prepared to manage appearance-related anxieties. Adolescents wanted support to develop the practical and social skills necessary to maintain a "normal" appearance and manage the negative responses of others. However, some adolescents showed resilience and, with support from friends and family, developed strategies to manage their altered appearance and its social consequences. These strategies are explored, which can inform interventions to support adolescents and parents.

The diagnosis, treatment, and side effects of childhood cancer have been described as extremely stressful experiences in the life of a child. Anecdotally, children report that a sense of humor helps them cope with the daily experiences of living with cancer; however, no research has examined sense of humor and childhood cancer stressors. This study investigated the effect of sense of humor on the relationship between cancer stressors and children’s psychosocial adjustment to cancer, immune function, and infection using Lazarus and Folkman’s theory of stress, appraisal, and coping. A direct relationship was observed between sense of humor and psychosocial adjustment to cancer, such that children with a high sense of humor had greater psychological adjustment, regardless of the amount of cancer stressors. A moderating effect was observed for incidence of infection. As childhood cancer stressors increase, children with high coping humor scores reported fewer incidences of infection tha...

Children with cancer and their families use complementary and alternative medicine (CAM) to reduce symptoms, cope with life-threatening illness, and improve overall well-being. Despite numerous published surveys on the use of CAM in pediatric oncology, few studies have tested CAM therapies for safety and efficacy. A growing body of literature in adult oncology provides evidence for the role of CAM to help manage symptoms and reduce distress. Translating this research to children requires studies with new models that address family roles and include measurement of outcomes relevant to children's developmental stages and unique responses. One of the limitations in pediatrics is the small samples available to single institutions. Conducting clinical trials through the cooperative group mechanism is one way of obtaining sufficient sample sizes to determine effectiveness and safety of CAM therapies. This article summarizes research to date and describes a beginning approach to measuring outcomes of supportive CAM therapies in children with cancer.

This qualitative study explored bereaved parents' and siblings' reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child's death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children's qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others' lives and prepare for their own deaths. Children's advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.

This qualitative study explores the caring situation of families with an immigrant background within the context of pediatric oncology care from the perspective of health care staff. Five focus group interviews and 5 complementary individual interviews were conducted after purposive and theoretical sampling, respectively. Grounded theory methodology revealed that obstacles to transcultural caring relationships are a main concern of the health care staff. These obstacles are divided into 4 main categories: linguistic, cultural and religious, social, and organizational. When health care staff fail to recognize obstacles to transcultural caring relationships, the result is inequity in care of families with an immigrant background. Equity in care for all does not mean identical treatment but, rather, care adjusted to the needs of the individual family regardless of background.

Multimodal therapy for the treatment of childhood cancer has resulted in increased survival rates, yet as growing cohorts of children mature, late effects are becoming apparent. Specifically, brain tumor survivors tend to have poor social skills, peer relationship problems, academic difficulties, and delayed college entry. This article addresses findings specific to the unique experience of childhood cancer survivors as they transition from adolescence to adulthood. Qualitative methods involving focus groups and in-depth interviews with 14 childhood cancer survivors and 22 family members were used. The dialectic of incompetence/competence pervaded all narratives. Contradictory concepts of integration/ isolation, realistic/unrealistic goals, and the need for special help/no help were underscored by respondents. The struggle to deal with these contradictory factors led to the simultaneous resistance and acceptance of feelings of competence.

Understanding how cancer symptom distress and resilience contribute to quality of life (QoL) in adolescent cancer and may potentially help these patients achieve better health-related outcomes. The objective of this study was to describe cancer symptom distress, QoL, and resilience in adolescents with cancer and to determine whether resilience is a mediating variable. Forty adolescent cancer patients were recruited, and data were collected via a demographic questionnaire, the Cancer Symptom Distress Scale, the Resilience Scale, and the Minneapolis-Manchester Quality of Life Scale. Pearson&#39;s correlation, multiple regressions, and the Sobel test were conducted. Both resilience and cancer symptom distress were regressed against QoL, accounting for 62.1% of observed variation in QoL scores. The bootstrap result estimated the true indirect effect between -.0189 and -.0024, with a 95% confidence interval. Resilience mediates the relationship between cancer symptom distress and QoL. Cl...

The synthesis of qualitative evidence is called metasynthesis. The term metasynthesis describes both a group of methods used to integrate the findings of individual qualitative research studies and the end product of a metasynthesis research project. In this article, pediatric oncology nurses are encouraged to use metasynthesis research to facilitate the integration of the existing body of qualitative pediatric oncology nursing research into practice. For pediatric oncology nurses to be successful in metasynthesis research, they require practical guidance in navigating the terminology and methodology of this evolving research design. Misconceptions about metasynthesis research, types of metasynthesis research designs, steps involved in developing a metasynthesis study, and the benefits and challenges of using metasynthesis in pediatric oncology research are presented. Examples of studies that have used 2 distinct metasynthesis techniques are provided.

Children with acute lymphoblastic leukemia experience pain from the disease, treatment, and procedures. Parents can be effective in managing their child’s pain, but little is systematically known about how they do this. Appreciative inquiry was used to frame the study within a strengths-based lens and interpretive descriptive methods were used to describe pain sources, parents’ pain care role, and key structures supporting parents pain care involvement. Eight paediatric oncology clinic nurses and 10 parents participated. Six key themes per group were identified. Parent themes included establishing therapeutic relationships, relearning how to care for my child, overcoming challenges and recognizing pain, learning parent specific strategies, empowering to take active pain care role, and maintaining relationships. Nurse themes included establishing therapeutic relationships, preparing parents to care for their child, facilitating pain assessment, teaching parents best pain care, empowe...

This study aims to compare the emotional indicators and depressive symptom levels of 6-to 12-year-old children with and without cancer. The sample included 20 children with cancer and 20 healthy children of similar ages and gender. Data were collected by using the Child Introduction Form, Children's Depression Inventory, the Human Figure Drawing test, and children's drawings. The results showed that the depressive symptom levels of children with cancer were significantly higher than those of healthy children. Impulsivity, mistrust, and anger were observed significantly more in children with cancer (P < .05). Although anxiety was equal in the two groups, shyness was observed more in the cancer group, though the difference was not significant (P > .05). The emotional indicators of both groups of children did not have an effect on their depression scores.

Background: Pain/distress during pediatric cancer treatments has substantial psychosocial consequences for children and families. We examined relationships between parents' caregiving self-efficacy, parents' affect in response to their children's cancer-related treatment procedures, and parents' symptoms of post-traumatic stress at follow-up.

Purpose: To analyze coping strategies used by children with cancer undergoing chemotherapy during hospitalization. Design and Methods: This was an exploratory study to analyze qualitative data using an inductive thematic analysis. Semistructured interviews using puppets were conducted with 10 children with cancer, between 7 and 12 years old, who were hospitalized and undergoing chemotherapy. Findings: The coping strategies to deal with chemotherapy were: understanding the need for chemotherapy; finding relief for the chemotherapy's side effects and pain; seeking pleasure in nourishment; engaging in entertaining activities and having fun; keeping the hope of cure alive; and finding support in religion.

Long-term survival for children with cancer is often achieved at a considerable cost in terms of med- ical and psychological sequelae. Although many sur- vivors are well and require only routine follow-up and surveillance, a cohort of survivors require com- prehensive management of complex, chronic medical issues by multiple subspecialists. For these survivors, care delivered within the context of an

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present wi...

As we move into the 21st century, we are faced with an increasing number of childhood cancer survivors who are living into their middle adult years and beyond. Providing appropriate, comprehensive follow-up care is a challenge for health care providers and one that can be met by developing quality follow-up programs for all childhood cancer survivors. The focus of these programs should be to educate these survivors on strategies to maximize their health and well being. This article discusses the evolution of survivor clinics, strategies for developing a quality program, and the role of nursing in the care of childhood cancer survivors. o 1999 by Association of Pediatric Oncology Nurses From the Dauid B. Perini, Jr. Quality of Life Clinic,

Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers.

Family management of childhood chronic conditions consists of 6 family factors: (1) the family’s view of the child’s daily life, (2) the impact of the condition on family life, (3) the difficulty of family life, (4) the family’s effort managing the child’s condition, (5) the family’s ability managing the child’s condition, and (6) parental mutuality. Recently, the Family Management Measure (FaMM), which measures family management of children with chronic conditions (excluding cancer), was validated. The purpose of this descriptive study was to examine the comparability of these 6 factors in families with childhood brain tumor survivors. First, 14 advanced practice nurses who are experts in neuro-oncology and survivorship rated items on the FaMM as relevant and clear to families of brain tumor survivors. Second, 22 cognitive interviews with parents of brain tumor survivors described family management as comparable with families of children with other chronic illness. In this report, ...

Purpose: Early-phase clinical trials (EPTs) have led to new, more effective treatment options for children with cancer. Despite the extensive use of EPTs in pediatric oncology, little is known about parent and child experiences during EPT participation. The purposes of this pilot study were to assess the feasibility and preliminary results of having children with cancer and their parents complete measures of treatment burden and quality of life (QOL) concurrent with EPT participation. Methods: In this descriptive, longitudinal, pilot study, parents and children were followed for the first 60 days of an EPT. Feasibility was assessed by participant enrollment and retention and completion of measures. Measures completed included the following: demographic form (completed at baseline); Diary of Trial Experiences to capture treatment burden (completed ongoing); and PedsQL™ Quality of Life Inventories, Cancer Modules, and Family Impact Module (completed at baseline, post–first disease eva...

This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses&#39; attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. It was hypothesized that the intervention would increase nurses&#39; positive attitudes toward and knowledge of spiritual care and increase nurses&#39; level of perceived spiritual care competence. A positive correlation was expected between change in nurses&#39; perceived attitudes toward and knowledge of spiritual care and change in nurses&#39; perceived spiritual care competence. A prospective, longitudinal design was employed, and analyses included one-way repeated-measures analysis of variance, linear regression, and partial correlation. Statistically significant differences were found in nurses&#39; attitudes toward and knowledge of spiritual care and nurses&#39; perceived spiritual care competence. There was a positive relati...

Research to date has overlooked the specific relationship between parents and nurses, particulariy in the context of family-centered care for a hospitalized child with cancer. The purpose of this study was to describe how parents perceive the relationship with the pediatric staff nurse necessitated by the hospitalization of their child with cancer. Using a symbolic interactionist framework and a modified grounded theory methodology, this study explored the parent-nurse relationship when a child with cancer is hospitalized. A purposive, theoretical quota sampling method was used to recruit 16 parents. Both parents' and nurses' care were examined from the parents' perspectives: mothers and fathers were interviewed separately. Analysis of the data led to the development of a substantive theory describing parent care (Making it Better), nursing care (Going Through the Motions, Caring Incompletely and Caring Completely), and the parent-nurse relationship (Working Together). Conditions influencing the care provided by parents and nurses and in turn the parent-nurse relationship were also identified. This research describes strategies nurses use to enhance the famiiy-centered care they provide and reveals the effect nursing care has on parents' hospital experiences. Recommendations are made for nursing research, practice, and education. 0 1995 by Association of Pediatric Oncology Nurses. LTHOUGH A PHYSICAL CURE of childhood cancer is now possible, there is research to indicate that curing childhood cancer has immediate and long-term implications (both physical and psychosocial) for the child and family.'t2 Supportive family relationships can help the child deal with these implications.3V4 Familycentered care (FCC) may promote such supportive relationships. FCC is a philosophy of care that identifies the child's family as the constant in hi&her life and recognizes the impor-

Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child’s initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child’s first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child’s diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple fa...

This study was designed as a longitudinal study with the purpose of investigating the effects of providing mouth care education to pediatric oncology patients on the degree of oral mucositis. The study sample included 16 children aged 8 to 18 years who were hospitalized in the pediatric oncology and hematology clinics at a university hospital. The results revealed a statistically significant difference between the degree of mucositis before and after the education given to children undergoing chemotherapy (P &lt; .05). The median pain values were significantly different before and after the education (P &lt; .05) as well. It was also found that there was a strong positive statistically significant correlation between the degree of mucositis and mean pain score both before and after the education (P &lt; .001). Consequently, it is reported that both the degree of mucositis and pain levels decreased when children were given planned mouth care education before chemotherapy and when the...

In recent decades, the intensification of treatment of children with cancer has resulted in a considerable increase in the number of those cured. The intensive treatment has also led to several problems for the children and their families. The aim of the present study was to identify the physical, psychological, social, and existential problems; symptoms and inconvenience caused by the disease and treatment or the hospital stay determined by Swedish health care personnel to be the most troublesome for children with cancer and their families. A modified three-round Delphi technique was used. In this way, 207 different problems were identified by 24 health care personnel. Accordiig to the personnel, the child is most troubled by physical symptoms, and family members are most troubled by feelings of anxiety about future events or possible events. The personnel interpreted the family members' problems as significantly worse than the child's. The results are related to the age and the diagnosis of the child. 0 19% by Association of Pediatric Oncology Nurses. E VERY YEAR in Sweden about 250 children are diagnosed with cancer. Improvements in diagnosis and therapy have increased their survival to more than 60%,' but the complicated medical procedures and longterm treatment affect the child and the family.*

Children with cancer are a subset of patients with central lines with distinct risk factors for infection including periods of prolonged neutropenia and compromised mucous membrane integrity. This article relates the implementation of principles of practice-based evidence to identify interventions in addition to best practice maintenance care bundles to reduce central line-associated bloodstream infections involving viridans group streptococci and coagulase-negative staphylococci on an inpatient pediatric oncology unit. Review of individual events combined with review of current clinical practice guided the development of structured protocols emphasizing routine oral care and general supportive cares. Key principles of the protocols emphasized a 1-2-3 mnemonic and included daily bathing, twice daily oral care, and out-of-bed activity 3 times daily. Poisson regression identified a significant main effect for time period for central line-associated bloodstream infection rates involvin...

To describe parent preference for treatment of febrile neutropenia and the key drivers of parental decision making, structured face-to-face interviews were used to elicit parent preferences for inpatient versus outpatient management of pediatric febrile neutropenia. Parents were presented with 4 different scenarios and asked to indicate which treatment option they preferred and to describe reasons for this preference during the face-to-face interview. Comments were recorded in writing by research assistants. A consensus approach to thematic analysis was used to identify themes from the written comments of the research assistants. A total of 155 parents participated in the study. Of these, 80 (51.6%) parents identified hospital-based intravenous treatment as the most preferred treatment scenario for febrile neutropenia. The major themes identified included convenience/disruptiveness, physical health, emotional well-being, and modifiers of parental decision making. Most parents preferred hospital-based treatment for febrile neutropenia. An understanding of issues that influence parental decision making may assist health care workers in planning program implementation and further support families in their decision-making process.

Cerebellar mutism (also known as posterior fossa syndrome) is a relatively common complication of posterior fossa surgery for primary brain tumors in children. Many children with cerebellar mutism experience long-term adverse neurological, cognitive, and psychological sequelae and require extensive interdisciplinary support. This study illustrates a typical case of cerebellar mutism in a child after resection of medulloblastoma, followed by a review of associated symptoms, clinical course, and modulating factors. Additionally, recommendations for providing educational support to children with cerebellar mutism are explored.

Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant. Parental caregivers (n = 161) completed an online survey. The most cited sources of information were the HSCT team (87.7%), books and other print materials (83.1%), and the Internet (81.5%). However, more than half of the respondents reported that finding resources and services was a problem. More than half identified managing the emotional and social impact of the transplant on their child, posttransplant and follow-up care, practical strategies for caregiving, maintaining the family, and taking care of themselves during this first year as important topics to address. Adequately and regularly assessing caregiver and family needs and providing resources to meet those needs, especially during transitions in care, are important components of transplant care.

It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child’s end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least “a little benefit” and half reported at least “a little burden” associated with participation. Less burden was perceived by younger and fem...

Oral mucositis research in children receiving anticancer therapy has been impeded by the lack of an acceptable, appropriate assessment scale. Some scales attempt to measure subjective symptoms associated with mucositis such as pain and difficulty swallowing. These types of patient-reported outcomes are gaining prominence in clinical trials because they capture the perspective of the patients in whom the intervention is designed to benefit. In mucositis research, very few patient-reported outcome measures have been developed. The aim of this study was to determine whether an adaptation of the adult-validated Oral Mucositis Daily Questionnaire is understandable and acceptable for use in the pediatric oncology/hematology population. Twelve subjects were asked to rate their opinion of understandability and acceptability of the adapted Oral Mucositis Daily Questionnaire. As a result of their comments, minor changes were made. Evaluation of the psychometric properties of this instrument can now be performed.