Research Interests: Medicine()
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OBJECTIVES Phase 1 clinical trials are essential in the development of novel therapies for childhood cancers. Children with cancer can participate in phase 1 clinical trials when no known curative therapy remains. Understanding the... more
OBJECTIVES Phase 1 clinical trials are essential in the development of novel therapies for childhood cancers. Children with cancer can participate in phase 1 clinical trials when no known curative therapy remains. Understanding the experiences of children and their families in these clinical trials can help ensure that participation supports the children's and parents' well-being. This article explores the specific aspects of pediatric oncology phase 1 trials that parents found particularly challenging. DATA SOURCES This qualitative, empirical phenomenology study considered 11 parents' experiences during the time their child with cancer participated in a phase 1 clinical trial. The primary study results were previously reported. This article reports parents' insights into the processes and procedures that occurred as part of participation in a pediatric oncology phase 1 trial. CONCLUSION Parents' experiences during the phase 1 clinical trials were primarily positive. However, data analysis revealed five aspects of these trials that were challenging for families: learning about clinical trials, being referred to another institution, research-only procedures, adhering to trial requirements, and oral medications. IMPLICATIONS FOR NURSING PRACTICE Although experiences during phase 1 clinical trials were positive overall, opportunities to enhance children's and parents' experiences warrant attention. Enhancing the education provided to families during recruitment and minimizing the logistical burdens associated with trial requirements through care coordination may alleviate challenges experienced by children and parents.
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Research Interests: Cultural Studies, Nursing, Mixed Methods, Plant Biology, Holistic Nursing, and 14 moreMedicine, Multidisciplinary, Ecosystems, Plant Growth Regulation, Transcultural Nursing, Clinical Sciences, Pediatric Oncology Nursing, Public health systems and services research, Maritime Engineering, Community Based Primary Health Health Care, Interdisciplinary Engineering, Intensive Care Medicine, Horticultural production, and Paediatrics and reproductive medicine(Medicine, Multidisciplinary, Ecosystems, Plant Growth Regulation, Transcultural Nursing, Clinical Sciences, Pediatric Oncology Nursing, Public health systems and services research, Maritime Engineering, Community Based Primary Health Health Care, Interdisciplinary Engineering, Intensive Care Medicine, Horticultural production, and Paediatrics and reproductive medicine)
(Medicine, Multidisciplinary, Ecosystems, Plant Growth Regulation, Transcultural Nursing, Clinical Sciences, Pediatric Oncology Nursing, Public health systems and services research, Maritime Engineering, Community Based Primary Health Health Care, Interdisciplinary Engineering, Intensive Care Medicine, Horticultural production, and Paediatrics and reproductive medicine)
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e21534 Background: Phase I clinical trials (P1Ts) are an essential step in the validation of novel therapies to treat childhood cancer. Children with cancer participate in P1Ts when no known curative therapy remains for their cancer. It... more
e21534 Background: Phase I clinical trials (P1Ts) are an essential step in the validation of novel therapies to treat childhood cancer. Children with cancer participate in P1Ts when no known curative therapy remains for their cancer. It is important to understand the experiences of children with advanced cancer and their families in P1Ts to ensure that participation supports the participants well-being. Methods: An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents lived experiences of their childs participation in pediatric oncology P1Ts. Parents were recruited from two pediatric academic medical centers in the Midwest United States and from national childhood cancer groups not affiliated with either medical center. Parents participated in individual interviews (mean length 59.1 minutes), with one broad data-generating question. Demographics and the childs clinical trial records provided additional context for understanding the experien...
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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)... more
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 distr...
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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... more
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 th...
Research Interests: Nursing()
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To explore and estimate relationships among the elements of the symptom cluster in survivors of brain tumors aged 8-12 years during early survivorship. Child participants completed treatment at least six months and less than six years... more
To explore and estimate relationships among the elements of the symptom cluster in survivors of brain tumors aged 8-12 years during early survivorship. Child participants completed treatment at least six months and less than six years prior to enrollment at Children's Hospital of Alabama in Birmingham or Cook Children's Medical Center in Fort Worth, Texas. With cross-sectional methods, the authors measured child-perceived stress, sleep-wake disturbance (SWD) (parent report), and fatigue. Children also provided saliva samples for cortisol measurement (stress response) and completed actigraphy sleep monitoring. Mild to moderate stress, SWD, and fatigue were reported, and a wide range of sleep times and cortisol levels were noted. Meaningful effect sizes in relationships between variables were found. The stress, SWD, and fatigue symptom cluster in survivorship necessitates routine nursing assessment.
Research Interests: Nursing()
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To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness. Bereaved parents have higher mortality and morbidity rates when... more
To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness. Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents' health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System-global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents' health at 3 and 6 months after their child's death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare ...
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Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this... more
Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this article is to describe the key behaviors of HCPs AYA perceive as essential to fostering connectedness with them and the outcomes AYA experience from such connectedness. The sample for this empirical phenomenological study was nine AYA cancer survivors (aged 20-23 years) who were diagnosed in adolescence. In-person individual interviews were conducted using a broad, data-generating question and analyzed using an adapted Colaizzi's method. The key behaviors of HCPs AYA perceive as essential to fostering connectedness include (1) exhibiting characteristics of knowing how to connect; (2) being watchful and attentive to AYA needs; (3) displaying a willingness to foster the relationship; (4) using humor; and (5) conveying respect, support, and caring. Outco...
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... more
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 c...
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Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children.... more
Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children. The purpose of this integrative review was to synthesize and appraise the evidence of how P1T participation, which begins with consent and ends with the transition off the P1T, can affect the well-being (either positively or negatively) of children with cancer. The Resilience in Individuals and Families Affected by Cancer Framework, which has an outcome of well-being, was used to synthesize findings. Articles on the experiences of child (n = 21) and adult (n = 31) P1T participants were identified through systematic searches. Articles were evaluated on rigor and relevance to P1T participant experiences as high, medium, or low. Minimal empirical evidence was found regarding the effect of P1T participation on the well-being of children with cancer. Ad...
Research Interests: Nursing()
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92 Background: Adolescents and young adults with cancer (AYA) have poorer outcomes than younger or older cancer patients. AYA survivorship outcomes are complicated by psychosocial late effects and engagement in risky lifestyle behaviors... more
92 Background: Adolescents and young adults with cancer (AYA) have poorer outcomes than younger or older cancer patients. AYA survivorship outcomes are complicated by psychosocial late effects and engagement in risky lifestyle behaviors that may increase secondary cancers and other chronic illnesses. Earlier identification and enhancement of protective factors that foster healthy lifestyle behaviors is an NIH/NCI priority. Early connectedness with healthcare providers (HCPs) may diminish risk-taking behaviors and foster healthcare self-management in AYA survivors .The purpose of this presentation is to describe the processes of developing a preliminary model of connectedness with HCPs for AYA. Methods: A preliminary model of connectedness was initially derived from a concept analysis that systematically critiqued 28 peer-reviewed sources. The preliminary model of connectedness was then validated and expanded by results of a phenomenological study of AYA cancer survivors (n = 9) rega...
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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... more
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...
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Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent... more
Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled "Communication Plan: Early through End of Life (COMPLETE)" to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents' stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret ( P = .0089); strong, significantly increased hope ( P ≤ .0001); and significantly decreased uncertainty ( P = .04). Over time, more than half of the parents (61.5%) preferred to receive information about their child's current...
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This research examined provider and hospital factors associated with patients' perceptions of how often explanations of new medications were "always" given to them, using Hospital Consumer Assessment of Healthcare Providers... more
This research examined provider and hospital factors associated with patients' perceptions of how often explanations of new medications were "always" given to them, using Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. HCAHPS results were obtained for October 2012 to September 2013, from 3,420 hospitals and combined with a Magnet-designated hospital listing. Multiple regression examined correlates of new medication communication, including health care provider factors (perceptions of nurse and physician communication) and health care system factors (magnet designation, hospital ownership, hospital type, availability of emergency services, and survey numbers). Nurse and physician communication was strongly associated with new medication communication (r = .819, p < .001; r = .722, p < .001, respectively). Multivariable correlates included nurse communication (p < .001), physician communication (p < .001), hospital ownership,...
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This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention. This randomized controlled pilot study compared... more
This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention. This randomized controlled pilot study compared satisfaction (usefulness, ease of use, and acceptability) with DEMA (n = 17 dyads) to an information support (IS) control group (n = 19 dyads). Six biweekly sessions (two in person and four by telephone) were delivered by trained nurses. Data analysis included descriptive statistics, independent-sample t tests, and content analysis. PwMCI receiving DEMA rated their satisfaction significantly higher (p = .033) than did the control group; there was no difference in satisfaction between caregivers across groups. Qualitative interview data supported the usefulness, ease of use, and acceptability of DEMA for both PwMCI and caregivers. Results documented PwMCI's satisfaction with DEMA as implemented by nurses to support PwMCI-caregiver dyads' engagement...
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ABSTRACT Objectives To describe the development and application of an organizing research framework to guide COG Nursing research. Data Sources Research articles, reports and meeting minutes Conclusion An organizing research framework... more
ABSTRACT Objectives To describe the development and application of an organizing research framework to guide COG Nursing research. Data Sources Research articles, reports and meeting minutes Conclusion An organizing research framework helps to outline research focus and articulate the scientific knowledge being produced by nurses in the pediatric cooperative group. Implication for Nursing Practice The use of an organizing framework for COG nursing research can facilitate clinical nurses’ understanding of how children and families sustain or regain optimal health when faced with a pediatric cancer diagnosis through interventions designed to promote individual and family resilience.
A qualitative study was done to determine actions by health care personnel perceived as helpful and unhelpful to parents at the time of their child&#39;s death. A semistructured interview with 14 parents was conducted and data were... more
A qualitative study was done to determine actions by health care personnel perceived as helpful and unhelpful to parents at the time of their child&#39;s death. A semistructured interview with 14 parents was conducted and data were classified according to existing or emerging themes: informing of the death, viewing the body, consent for autopsy, siblings, effects of health care personnel on the grieving process, supportive persons, chaplains, parents&#39; states of mind at the time of death, attitudes of health care personnel, and closure. Implications for providing parental care at the time of the child&#39;s death are discussed.
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Although courage is an important variable when clients successfully deal with hospitalization and illness, the concept is contradictory and ill-defined in nursing and other literature. The phenomenological approach and research method has... more
Although courage is an important variable when clients successfully deal with hospitalization and illness, the concept is contradictory and ill-defined in nursing and other literature. The phenomenological approach and research method has been suggested as one means of concept clarification and theory development. Using the phenomenological approach, this study asked: What is the essential structure of the lived experience of courage in chronically ill adolescents? Nine chronically ill adolescents participated in an open-ended, audiotape-recorded interview, describing their subjective experiences of courage. The descriptions were analyzed phenomenologically. Significant statements were extracted, meanings formulated, and themes identified. Thirty-one theme clusters in nine categories emerged from which an essential structure of courage in chronically ill adolescents was derived.
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To review research on spiritual perspectives and spiritual care of adolescents and young adults (AYA) living with cancer. Peer-reviewed publications, book chapters, and websites of professional organizations. There is a paucity of... more
To review research on spiritual perspectives and spiritual care of adolescents and young adults (AYA) living with cancer. Peer-reviewed publications, book chapters, and websites of professional organizations. There is a paucity of research specifically investigating AYA spirituality and lack of AYA-sensitive instruments to measure spirituality. Research that applies robust scientific methods to the study of AYA spirituality is needed. Research that provides evidence on which to base best practices for spiritual care that supports AYA spiritual well-being is likewise necessary. Nurses can influence AYA health-related outcomes and experiences by providing ethical and evidence-based spiritual nurture.
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When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training... more
When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors. Although half of the group received training in a 1-day program and half in a 2-day program, content for all participants included 4 modules: family assessment, goal-directed treatment planning, anticipatory guidance, and staff communication and follow-up. Evaluations included dichotomous ratings and qualitative comments on content, reflection, and skills practice for each module. Positive aspects of our training includ...
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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... more
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...
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Nurse involvement in research is essential to the expansion of nursing science and improved care for patients. The research participation challenges encountered by nurses providing direct care (direct care nurses) include balancing... more
Nurse involvement in research is essential to the expansion of nursing science and improved care for patients. The research participation challenges encountered by nurses providing direct care (direct care nurses) include balancing patient care demands with research, adjusting to fluctuating staff and patient volumes, working with interdisciplinary personnel, and feeling comfortable with their knowledge of the research process. The purpose of this paper is to describe efforts to engage nurses in research for the Stories and Music for Adolescent/Young Adult Resilience during Transplant (SMART) study. SMART was an NIH-funded, multisite, randomized, behavioral clinical trial of a music therapy intervention for adolescents/young adults (AYA) undergoing stem cell transplant for an oncology condition. The study was conducted at 8 sites by a large multidisciplinary team that included direct care nurses, advanced practice nurses, and nurse researchers, as well as board-certified music thera...
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Purpose: To describe and compare adolescent and parent perspectives on communication, family adaptability and cohesion, as well as relationships among these variables, during the first month of an adolescent’s cancer diagnosis. Methods:... more
Purpose: To describe and compare adolescent and parent perspectives on communication, family adaptability and cohesion, as well as relationships among these variables, during the first month of an adolescent’s cancer diagnosis. Methods: Seventy adolescent-parent dyads were enrolled as part of a larger multi-site study. The adolescents ranged in age from 11 to 19, and 61% were males. Parents were predominately mothers (83%). Dyads were predominately non-Hispanic Caucasian (63%). Measures included the Parent-Adolescent Communication Scale and the Family Adaptability and Cohesion Evaluation Scale (FACES II). Paired t-tests, Pearson correlations, intra-class correlation coefficients and multiple linear regression analyses were completed. Results: Adolescent scores on communication, family adaptability and cohesion were significantly lower than parent scores. The inter-dyadic agreement between adolescents and parents was low. Communication, family adaptability and cohesion were examined ...