Pediatric Oncology Nursing

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.

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.

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-

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.

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.

Multidisciplinary collaboration in therapeutic research in childhood cancer has been responsible for enormous improvements in outcomes. Many of the improvements have resulted from large clinical trials carried out in multisite settings through the Children’s Oncology Group (COG) and its predecessors, the Children’s Cancer Group, the Pediatric Oncology Group, the National Wilms’ Tumor Study, and Intergroup Rhabdomyosarcoma Study Groups. Childhood acute lymphoblastic leukemia models the past success of 35 years of randomized clinical trials that resulted in survival rates of around 80%. However, more can be done to improve both survival rates and the quality of survival. Areas that can benefit from a transdisciplinary model of research are discussed, as well as challenges to this form of collaboration.

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.

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.

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.

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...

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

The purpose of this philosophical hermeneutic inquiry was to understand the meaning of children&#39;s cancer camps for the child with cancer and the family. Six childhood cancer families and 5 cancer camp counselors were interviewed, in order to bring understanding to this topic. Findings from this research revealed that camp means different things for different families, and that much is at play in the cancer camp experience: the healing and developmental power of play, finding acceptance and fit, grief as something to live with versus &quot;get over,&quot; storytelling as a means of reshaping and understanding traumatic experiences, and the solidarity of the community as one that creates intense, healing bonds. Children&#39;s cancer camps, we conclude, should be considered a necessity, versus a luxury, and could even be thought of as a psychosocial intervention for some children and families. Barriers such as structure of funding and access to resources are present and likely due ...

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...

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.

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.

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.

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors...

Children living with and dying of advanced-stage cancer suffer physically, emotionally, and spiritually. Relief of their suffering requires comprehensive, compassionate palliative and end-of-life (EoL) care. However, an EoL care program might appear inconsistent with the mission of a pediatric oncology research center committed to seeking cures. Here the authors describe the methods used to achieve full institutional commitment to their EoL care program and those used to build the program's philosophical, research, and educational foundations after they received approval. The authors convened 10 focus groups to solicit staff perceptions of the hospital's current palliative and EoL care. They also completed baseline medical record reviews of 145 patient records to identify key EoL characteristics. The authors then crafted a vision statement and a strategic plan, implemented new research protocols, and established publication and funding trajectories. They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources.

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...

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-

The purpose of this project was to obtain input from the families of survivors of childhood cancer regarding their needs surrounding the "coming off treatment" (COT) period. A questionnaire was developed to record their needs, their wishes, and their satisfaction surrounding this period of time. Closer examination of the time surrounding COT was undertaken in an attempt to enhance this area of service for patients and families in our clinic setting. Establishing a structured protocol is likely to alleviate some of the anxiety that surrounds this time for families and help us to provide better continuity of care. After identifying a cohort of patients and families, the reason for the survey was explained and they were asked to complete the questionnaire before they left the clinic setting. At the completion of the study, 82% of the cohort had been approached, and 100% of this group had completed the survey (n ‫؍‬ 41). Less than 50% of participants felt they had had a formal "coming off treatment" review but, of that same group, 89% were satisfied with the process. Participants identified areas of importance and health care professionals who they would like involved in the COT process. After reviewing the responses to the questionnaires, the decision was made to proceed in preparing a COT protocol.

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.

Children and families with a foreign background and limited Swedish proficiency have to communicate through interpreters in childhood cancer care centers in Sweden. Interpreter-mediated events deal with many difficulties that potentially hinder the transfer of information. The purpose of our study was to explore interpreters&#39; experiences of interpreting between health care staff and limited Swedish proficiency patients/families in childhood cancer care. Using purposive samples, we interviewed 11 interpreters individually. The interviews were analyzed using qualitative content analysis. Analyses of the data resulted in the main theme of creating a meeting point of understanding, constructed from 3 subthemes: balancing between cultures, bridging the gaps of knowledge, and balancing between compassion and professionalism. Our result shows that in order to create a sustainable meeting point of understanding, it is necessary to explain both the context and cultural differences. These...

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 ...

ABSTRAK
Latar belakang: Perkembangan kesehatan anak sangat dipengaruhi oleh interaksi orang tua-anak dan keterikatan orang tua-anak. Usia 0-24 bulan merupakan periode yang menentukan kualitas kehidupan sehingga disebut dengan golden period. Faktor yang mempengaruhi kualitas interaksi pengasuh (Caregiver) dengan anak dapat berasal dari pengasuh maupun anak, salah satunya adalah pendapatan pengasuh. Tujuan: Mengetahui hubungan pendapatan pengasuh dengan kualitas interaksi pengasuh dan anak stunting usia 6-23 bulan. Metode: Penelitian ini merupakan rancangan cross sectional. Subjek penelitian adalah pengasuh dengan anak stunting usia 6-23 bulan. Subjek penelitian direkrut dengan menggunakan tekhnik Consecutive sampling. Instrumen yang digunakan yaitu lembar observasi Parenting Interaction with Children: Checklist of Observation Linked to Outcome (PICCOLO). Analisis data dilakukan dengan uji Chi square. Hasil: Terdapat hubungan yang bermakna antara pendapatan pengasuh (0,001) dengan kualitas interaksi pengasuh dengan anak stunting usia 6-23 bulan. Saran: Pengasuh diharapkan mampu meningkatkan pengajaran seperti stimulasi kognitif dan bahasa, serta meningkatkan kemampuan bereaksi seperti respon yang cepat dan tanggap terhadap isyarat anak sehingga dapat meningkatkan kualitas interaksi pengasuh dengan anak.


ABSTRACT
Background: Child health development is strongly influenced by parent-child interactions and parent-child attachments. 0-24 months is a period that determines the quality of life so called the golden period. Factors that influence the quality of caregiver interactions can come from caregivers or children, one of which is caregivers income. Objective: To determine related caregiver's income to the quality of caregiver interaction with stunting children in 6-23 months of aged. Method: This study is a cross sectional design. Research subjects were caregivers with stunting children in 6-23 months of age. Research subjects were recruited using Consecutive sampling techniques. The instruments used were Parenting Interaction with Children observation sheets: Checklist of Observation Linked to Outcome (PICCOLO). Data analysis was done by Chi square test. Results: There was a significant relationship between caregiver's income (0.001) with the quality of caregiver interaction with stunting children in 6-23 months of age. Suggestion: Caregivers are expected to be able to improve teaching such as cognitive and language stimulation, as well as improve the ability to react such as rapid response and responsiveness to children's cues so as to improve the quality of caregiver interactions with children.

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...

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.

An estimated 60% of pediatric oncology patients experience malnutrition during cancer therapy. Initiation of enteral nutrition (EN) and parenteral nutrition (PN) are interventions aimed at maintaining and promoting growth. Limited literature addressing perceptions of nutrition support methods exists. To develop effective guidelines on nutrition education, it is important to understand perceptions regarding nutrition support. The purpose of this pilot study was to describe perceptions of pediatric oncology patients and parents regarding the use of EN and PN and identify influencing variables. A convenience sample of pediatric oncology patients and parents were surveyed at a large Midwestern children’s hospital. The majority of those surveyed chose PN over EN if they or their child were unable to eat or maintain their nutritional status. Perceptions may be influenced by comfort, ease of nutrition or medication administration, experience, health care team’s recommendation, choice, and ...

Noncompliance with prescribed medication has been associated with increased chance of relapse and poor outcome. Side effects may be an important cause of noncompliance. Fifty-one parents of children with acute lymphoblastic leukemia in a tertiary care hospital in Indonesia were interviewed about their perception of side effects and their impact on treatment noncompliance and daily activities. A symptom checklist assessing 13 common symptoms was used to examine side effects. During chemotherapy, childhood acute lymphoblastic leukemia patients suffered from psychological as well as physical side effects. The most frequent side effect reported by parents was behavior alteration (92%). Second and third in frequency were increased appetite and infections, reported by 88% and 83% of parents, respectively. The most severe side effects were leg weakness, increased appetite, and behavior alteration. The overall frequency of side effects was weakly correlated to noncompliance. Reducing the im...

The experiences of pediatric oncology nurses with prognosis-related communication (PRC) remain largely unknown. The purpose of this article is to report results of focus groups wherein 15 pediatric oncology nurses from three Midwestern pediatric cancer programs provided descriptions of PRC and how they experience PRC within their daily practice. Data from focus groups were analyzed via an interpretive descriptive approach, which resulted in three themes: (1) nurses’ operational definition of PRC, (2) nurses’ roles in PRC, and (3) nurses’ preparation for engagement in PRC. From discussions within the focus groups, nurses recognized that PRC occurs across a continuum. Nurses distinguished that the definition of PRC expands beyond simply reporting life expectancy to describing the consequences of cancer- and treatment-related toxicities and effects. When nurses are not actively invited by their physician partners to participate in PRC, nurses will often develop workarounds to ensure th...

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.