A5015832176- Childhood Cancer Survivors' Quality of Life
- Palliative Care and End-of-Life Issues
- Family Support in Illness
- Ethics and Legal Issues in Pediatric Healthcare
- Optimism, Hope, and Well-being
- Family and Patient Care in Intensive Care Units
- Music Therapy and Health
- Family and Disability Support Research
- Pediatric Pain Management Techniques
- Grief, Bereavement, and Mental Health
- Multiple Sclerosis Research Studies
- Adolescent and Pediatric Healthcare
- Religion, Spirituality, and Psychology
- Health Sciences Research and Education
- Patient-Provider Communication in Healthcare
- Migration, Health and Trauma
- Art Therapy and Mental Health
- Hemoglobinopathies and Related Disorders
- Social Media in Health Education
- Patient Dignity and Privacy
- Geriatric Care and Nursing Homes
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Nursing Education, Practice, and Leadership
- Ethics in Clinical Research
- Nursing Diagnosis and Documentation
Saint Louis University
2016-2025
University of Wisconsin–Madison
2025
UCLouvain Saint-Louis Brussels
2012-2024
East Carolina University
2024
Clemson University
2024
University of Colorado Denver
2013-2023
Center for Cancer and Blood Disorders
2013-2023
Children's Hospital Colorado
2013-2023
Ronkowski (Poland)
2023
University of Colorado Anschutz Medical Campus
2015-2021
BACKGROUND To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy a therapeutic music video (TMV) intervention delivered during acute phase HSCT to: 1) increase protective factors spiritual perspective, social integration, family environment, courageous coping, and hope‐derived meaning; 2) decrease illness‐related distress defensive coping; 3) outcomes self‐transcendence resilience. METHODS...
The purpose of this study was to examine hope and spiritual well-being, with its 2 dimensions religious well-being existential as they relate age gender among adolescents cancer. A cross-sectional design guided by the conceptual framework, Adolescent Psychosocial Adaptation Cancer Experience. total 78 a diagnosis cancer were enrolled from pediatric oncology clinics. Middle (15-17 years age) reported higher than late (18-20 age). Middle-adolescent boys more hopeful early adolescent (13- 14...
Health care providers recognize that delivery of effective communication with family members children life-threatening illnesses is essential to palliative and end-of-life (PC/EOL). Parents value the presence nurses during PC/EOL their dying child. It vital nurses, regardless years work experience, are competent feel comfortable engaging in discussions. This qualitative-descriptive study used focus groups explore perspectives 14 novice pediatric oncology (eg, less than 1 year experience)....
Background: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) end life (EOL) phenomenon with limited research. It unclear how the level nursing experience influences perspectives nurses communicating EOL. Objective: The aim this study to describe commonalities experienced nurses’ perceptions PC EOL barriers facilitators effective communication. Methods: This was part larger multisite...
Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus comprise small sample (such as children cancer) at points in care that few experience end of life). This data-based article describes how findings from qualitative study were used guide shape pediatric oncology palliative intervention. data lay strong foundation for subsequent pilot intervention work by facilitating the development an underlying conceptualization,...
Objectives: To retrospectively evaluate the incidence of palliative care (PC) consultations for older adults with lung cancer who died in past five years, as well impact social determinants health (SDOHs) on PC consultations.Sample & Setting: 63 participants aged 65 years or a diagnosis years. Electronic records were used to extract data.Methods Variables: A medical record extraction form was collect following data: (a) diagnosis, (b) consultations, (c) patient demographic information, and...
Background Awakening the spiritual identity in adolescents with cancer is a phenomenon that has not been fully explored. Nevertheless, empirical research shows spirituality associated positive health outcomes for cancer. This finding indicates awakening can serve as coping mechanism contexts. Objective In this study, we (1) describe essential structure of process experienced and perceived by (2) explore factors facilitate or hinder process. Methods We used qualitative phenomenological...
Background: There is a lack of theoretically sound, scientifically-tested interventions for bereaved parents. Aims: To describe the acceptability and feasibility testing an online grief-support-resource platform Methods: Participants included 20 parents children who had died from disease. The study involved quasi-experimental treatment-only two-site design. Findings: was not able to recruit intended number participants. website designed support during grieving found be helpful by...
Purpose/Objectives: To identify symptoms of greatest parental concern on the last day and during week their children's lives, five most common concern, symptom-management strategies used lives.
This study examines the relationships of hope and spiritual well-being (SWB)--and its dimensions, religious (RWB) existential (EWB)--to time since diagnosis among adolescents with cancer. A descriptive cross-sectional design was used. The sample 78 diagnosed cancer recruited from two pediatric oncology clinics. Adolescents in first periods reported significantly higher levels SWB, RWB, EWB than those subsequent periods. Hope did not vary over time. Hence, may influence adolescents' SWB...
This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for hematopoietic stem cell transplant. A purposive subsample 14 AYA were interviewed using broad open-ended data-generating question about their TMV experiences. At end each interview, we also asked suggestions on how to improve TMV....
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We the web-based intervention communication. We hypothesized that compared to usual legacy-making would improve communication.Between 2015 and 2018, Facebook advertisements were used recruit families children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads randomly assigned or care...
The purpose of this study was to describe pediatric oncology nurse managers’ (NMs) perspectives palliative care/end-of-life (PC/EOL) communication. study, guided by group-as-a-whole theory and empirical phenomenology, part a larger, multisite aimed at understanding nurses’ experiences PC/EOL Nurses were assigned focus groups based on length or type experience (i.e., nurses with <1, 2–5, >5 years’ work NMs). Eleven NMs from three Midwestern hospitals large programs participated in one...
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, acceptable children their families increase access palliative care services in the home community. Our previous work included development of a legacy using face-to-face digital storytelling for with cancer showed feasibility strong promise improve child outcomes. However, techniques limited our recruitment, thus decreasing sample size potential broader populations. Here...
Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end life. Although legacy interventions have been tested in adults, the impact activities on QOL children has yet to clearly defined.
Abstract Purpose To evaluate an end‐of‐life ( EOL ) program related to specific outcomes (i.e., number of hospitalizations and place death) for children with brain tumors. Design Methods From 1990 2005, a retrospective chart review was performed specified 166 admission pediatric Results Patients who received the were hospitalized less often n = 114; chi‐square 5.001 df 1, p <.05) than patients did not receive program. Practice Implications An may improve symptom management decrease...