Publications by authors named "Verna L Hendricks-Ferguson"

23 Publications

  • Page 1 of 1

A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer.

J Pain Symptom Manage 2020 08 18;60(2):417-421. Epub 2020 Apr 18.

Indiana University School of Nursing, Indianapolis, Indiana, USA.

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL).

Objectives: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL.

Methods: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope.

Results: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001).

Conclusion: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.03.033DOI Listing
August 2020

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents.

Am J Hosp Palliat Care 2019 Dec 3;36(12):1124-1133. Epub 2019 Jul 3.

4 The IUPUI Research in Palliative and End-of-Life Communication and Training (RESPECT), Indiana University School of Nursing, Indianapolis, IN, USA.

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 the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model.

Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1049909119858931DOI Listing
December 2019

The Oldest Sins in the Book: Lessons for Nursing Research.

J Christ Nurs 2019 Jul/Sep;36(3):E40-E42

Gail E. Pittroff, PhD, RN, is an associate professor at the Catherine McAuley School of Nursing at Maryville University in St. Louis, Missouri. Her program of research focuses on palliative and end-of-life care topics that foster high-quality patient-centered care with an emphasis on spiritual care. Verna L. Hendricks-Ferguson, PhD, RN, PCN, FAAN, is a professor and the coordinator of the RN-to-BSN program at Saint Louis University, School of Nursing, St. Louis, Missouri. Her program of research focuses on palliative and end-of-life care topics that foster high-quality patient-centered care.

The oldest sins in Scripture and resultant fall of humankind relate to temptation, deception, coercion, and disobedience. These same ethical issues are ever-present in conducting research. The purpose of this article is to draw on lessons from Genesis to avoid the common pitfalls of the original sins when engaging in nursing research.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/CNJ.0000000000000636DOI Listing
January 2020

CVAD Homecare Management: Investigating the Use of a Digital Education Tool During Nurse-Delivered Instruction to Parents for New Central Lines in Children With Cancer.

Clin J Oncol Nurs 2019 06;23(3):295-300

Saint Louis University.

Background: Research on parent understanding of homecare management of external central venous access devices (CVADs) for children with cancer is limited.

Objectives: The goal was to investigate whether the use of a DVD education intervention reduced adverse complications and improved parent education for homecare management of CVADs for pediatric patients with cancer.

Methods: Participants were randomized to an experimental group (DVD and nurse teaching) or a control group (nurse teaching). Postintervention evaluation included parent satisfaction and CVAD knowledge proficiency, blood infection rates, use of alteplase, and CVAD replacement.

Findings: Fifty-four enrolled caregiver-patient dyads completed the study measures, with 21 dyads assigned to the control group and 33 assigned to the experimental group. Alteplase was ordered significantly less often in the experimental group. No other findings were significant.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1188/19.CJON.295-300DOI Listing
June 2019

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

J Pediatr Oncol Nurs 2019 May/Jun;36(3):178-190. Epub 2019 Apr 3.

6 Saint Louis University, St. Louis, MO, USA.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454219835448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197215PMC
May 2020

Pediatric palliative care nursing.

Ann Palliat Med 2019 Feb 25;8(Suppl 1):S39-S48. Epub 2018 Jun 25.

Vanderbilt University School of Nursing and Medicine (Pediatrics), Nashville, TN, USA.

Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.21037/apm.2018.06.01DOI Listing
February 2019

Recommendations and Extraction of Clinical Variables of Pediatric Multiple Sclerosis Using Common Data Elements.

J Neurosci Nurs 2018 Jun;50(3):171-176

Questions or comments about this article may be directed to Pamela Newland, PhD RN CMSRN, at She is an Associate Professor, Goldfarb School of Nursing at Barnes Jewish College, St. Louis, MO. John M. Newland, BS, is Programmer Analyst, Pediatric Computing, Washington University in St. Louis, St. Louis, MO. Verna L. Hendricks-Ferguson, PhD RN CHPPN FPCN FAAN, is Associate Professor, St. Louis University School of Nursing, St. Louis, MO. Judith M. Smith, PhD RN GCNS-BC, is Professor, Goldfarb School of Nursing at Barnes Jewish College, St. Louis, MO. Brant J. Oliver, PhD MS MPH APRN-BC, is Assistant Professor, The Dartmouth Institute and Geisel School of Medicine; Associate Professor, School of Nursing, MGH Institute of Health Professions, Boston, MA; and Faculty Senior Scholar, VA National Quality Scholars Fellowship, White River Junction, VT. Pamela Newland is a member of the Editorial Board for the Journal of Neuroscience Nursing.

Purpose: The purpose of this article was to demonstrate the feasibility of using common data elements (CDEs) to search for information on the pediatric patient with multiple sclerosis (MS) and provide recommendations for future quality improvement and research in the use of CDEs for pediatric MS symptom management strategies Methods: The St. Louis Children's Hospital (SLCH), Washington University (WU) pediatrics data network was evaluated for use of CDEs identified from a database to identify variables in pediatric MS, including the key clinical features from the disease course of MS. The algorithms used were based on International Classification of Diseases, Ninth/Tenth Revision, codes and text keywords to identify pediatric patients with MS from a de-identified database. Data from a coordinating center of SLCH/WU pediatrics data network, which houses inpatient and outpatient records consisting of patients (N = 498 000), were identified, and detailed information regarding the clinical course of MS were located from the text of the medical records, including medications, presence of oligoclonal bands, year of diagnosis, and diagnosis code.

Results: There were 466 pediatric patients with MS, with a few also having the comorbid diagnosis of anxiety and depression.

Conclusions: St. Louis Children's Hospital/WU pediatrics data network is one of the largest databases in the United States of detailed data, with the ability to query and validate clinical data for research on MS. Nurses and other healthcare professionals working with pediatric MS patients will benefit from having common disease identifiers for quality improvement, research, and practice. The increased knowledge of big data from SLCH/WU pediatrics data network has the potential to provide information for intervention and decision-making that can be personalized to the pediatric MS patient.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/JNN.0000000000000368DOI Listing
June 2018

Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

Cancer Nurs 2019 Jul/Aug;42(4):E22-E30

Author Affiliations: Saint Louis University School of Nursing (Dr Hendricks-Ferguson), Missouri; and Indiana University School of Nursing (Dr Haase), Indianapolis.

Background: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers.

Objective: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers.

Methods: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers.

Results: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE.

Conclusion: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents.

Implications For Practice: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/NCC.0000000000000589DOI Listing
April 2020

Undergraduate students' perspectives of healthcare professionals' use of shared decision-making skills.

J Interprof Care 2018 Jul 7;32(4):481-489. Epub 2018 Mar 7.

School of Nursing, Saint Louis University, St. Louis, MO, USA.

Essential for future healthcare professionals (HCPs) to delivering ethical and empathetic patient-centred care (PCC) as a team is the understanding of appropriate shared decision-making (SDM) responses when facilitating discussions with patients and family members. The purpose of this study was to evaluate undergraduate students' perspectives about HCPs' use of SDM as described in a case-study reflection assignment. An exploratory qualitative approach was used to analyse student-reflection assignments. The sample included 42 undergraduate students enrolled in an interprofessional education (IPE) course at a Midwest university based in the United States. Data consisted of student responses in a course reflection assignment that captured their perspectives about recommended SDM responses by HCPs. Student assignments were randomly selected using stratified sampling to provide representation of eight HCP roles. Analysis revealed two themes related to students' use of SDM responses. Results provide evidence supporting the tenet that through IPE, healthcare students can develop an understanding of SDM and ethical principles related to PCC.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1080/13561820.2018.1443912DOI Listing
July 2018

Preparing Clinical Nurses for Nursing Research: Evaluation of Training Procedures in a Palliative Care Pilot Study.

J Christ Nurs 2018 Jan/Mar;35(1):38-43

Gail Elaine Pittroff, PhD, MAPS, RN, is an assistant professor at Maryville University, St. Louis, Missouri. Her research is focused on generating knowledge about spiritual care in a palliative setting. Verna L. Hendricks-Ferguson, PhD, RN, CHPPN, FPCN, FAAN, is an associate professor at St. Louis University School of Nursing, St. Louis, Missouri. Her research is focused on generating knowledge about provider communication in palliative care.

The importance of academic nurse researchers partnering with clinical nurses for clinical research has been well articulated. A 4-hour training program designed to equip staff nurses to become fully engaged researchers in a palliative care end of life communication-focused research study resulted in enriched human caring skills and professional growth. Results indicate that the training (didactic lecture, group reflection, role-playing) was adequate to prepare the nurses to deliver the study protocol. Relevance for primary investigators, nurses, clinical institutions, those interested in partnered research, and professional growth are discussed.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/CNJ.0000000000000462DOI Listing
September 2019

Stories and Music for Adolescent/Young Adult Resilience During Transplant Partnerships: Strategies to Support Academic-Clinical Nurse Collaborations in Behavioral Intervention Studies.

Clin Nurse Spec 2017 Jul/Aug;31(4):195-200

Author Affiliations: Associate Professor (DrHendricks-Ferguson), School of Nursing, Saint Louis University, Missouri; Pediatric Nurse Practitioner (Dr Barnes), Swansea, Illinois; Robert Wood Johnson Foundation Future of Nursing Scholar, PhD Student (Ms Cherven), School of Nursing, University of Alabama at Birmingham; Nurse Researcher (Dr Stegenga), Children's Mercy Hospital, Kansas, Missouri; Consultant (Ms Roll), Department of Pediatrics, The University of Texas Health Science Center at San Antonio, Associate Professor (Dr Docherty), School of Nursing, Duke University, Durham, North Carolina; and Holmquist Professor of Pediatric Oncology Nursing (Dr Haase), School of Nursing, Indiana University, Indianapolis.

Evidence-based nursing is in the forefront of healthcare delivery systems. Federal and state agencies, academic institutions, and healthcare delivery systems recognize the importance of nursing research. This article describes the mechanisms that facilitate nursing partnerships yielding high-level research outcomes in a clinical setting. A phase-II multicenter behavioral intervention study with pediatric stem cell transplant patients was the context of this academic/clinical research partnership. Strategies to develop and maintain this partnership involved a thorough understanding of each nurse's focus and barriers. A variety of communication plans and training events maximized preexisting professional networks. Academic/clinical nurses' discussions identified barriers to the research process, the most significant being role conflict. Communication and validation of benefits to each individual and institution facilitated the research process during challenging times. Establishing strong academic/clinical partnerships should lead to evidence-based research outcomes for the nursing profession, healthcare delivery systems, and patients and families.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/NUR.0000000000000305DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5918340PMC
September 2017

Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor.

J Pediatr Oncol Nurs 2017 May/Jun;34(3):203-213

2 Indiana University, Indianapolis, IN, USA.

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 condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454216676836DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6711580PMC
May 2017

Palliative Care Considerations for Patients With Head and Neck Cancer With Children at Home.

Clin J Oncol Nurs 2016 Dec;20(6):585-587

Missouri Baptist Medical Center.

Adult patients diagnosed with head and neck cancer (HNC) who may have contact with children in the home setting are at risk of experiencing distress because of embarrassing and challenging oral symptoms often associated with an HNC diagnosis and the side effects of required treatments. This article features a case study involving a patient diagnosed with HNC and details how oncology nurses can provide patients with HNC and their caregivers with resources and support.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1188/16.CJON.585-587DOI Listing
December 2016

Experiences of Pediatric Oncology Patients and Their Parents at End of Life: A Systematic Review.

J Pediatr Oncol Nurs 2016 Mar-Apr;33(2):85-104. Epub 2015 Jul 27.

Saint Louis University, St. Louis, MO, USA.

Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the care provided to children and families during the vulnerable period. The purpose of this systematic review was to describe the experience of pediatric oncology patients and their parents during end of life, and identify gaps to be addressed with interventions. A literature search was completed using multiple databases, including CINAHL, PubMed, and PsycInfo. A total of 43 articles were included in the review. The analysis of the evidence revealed 5 themes: symptom prevalence and symptom management, parent and child perspectives of care, patterns of care, decision making, and parent and child outcomes of care. Guidelines for quality end-of-life care are needed. More research is needed to address methodological gaps that include the pediatric patient and their sibling's experience.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454215589715DOI Listing
November 2016

Evaluation of Physician and Nurse Dyad Training Procedures to Deliver a Palliative and End-of-Life Communication Intervention to Parents of Children with a Brain Tumor.

J Pediatr Oncol Nurs 2015 Sep-Oct;32(5):337-47. Epub 2015 Jan 26.

Indiana University School of Nursing, Indianapolis, IN, USA.

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 included parent advisers' insights, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and an MD/RN dyad approach. Lessons learned and challenges related to our training procedures will be described. Overall, the MDs and RNs reported that our PC/EOL communication-training procedures were helpful and useful. Future investigators should carefully plan training procedures for PC/EOL communication interventions.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454214563410DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5918283PMC
September 2016

Novice Nurses' Experiences With Palliative and End-of-Life Communication.

J Pediatr Oncol Nurs 2015 Jul-Aug;32(4):240-52. Epub 2015 Jan 2.

Indiana University, School of Nursing, Indianapolis, IN, USA.

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 with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454214555196DOI Listing
September 2016

Contributions of advanced practice nurses with a DNP degree during palliative and end-of-life care of children with cancer.

J Pediatr Oncol Nurs 2015 Jan-Feb;32(1):32-9. Epub 2014 Nov 21.

Private Practice, St. Louis, MO, USA.

The doctorate in nursing practice (DNP) degree is recommended as the terminal degree for advanced practice nurses by 2015. Improvement in the quality of palliative and end-of-life care for children with cancer is recognized as a health care priority. The purpose of this article is to describe: (a) how the American Association of Colleges of Nursing's 8 core elements and competencies can be used by DNP-advanced practice nurses in pediatric oncology settings and (b) the DNP-advanced practice nurses' leadership role to advocate translation of evidence in the care of pediatric oncology patients and to promote interdisciplinary collaboration to improve health care outcomes for pediatric oncology patients.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454214555195DOI Listing
September 2016

Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: a report from the Children's Oncology Group.

Cancer 2014 Mar 27;120(6):909-17. Epub 2014 Jan 27.

Indiana University School of Nursing, Indianapolis, Indiana.

Background: To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; 2) decrease risk factors of illness-related distress and defensive coping; and 3) increase outcomes of self-transcendence and resilience.

Methods: This was a multisite randomized, controlled trial (COG-ANUR0631) conducted at 8 Children's Oncology Group sites involving 113 AYAs aged 11-24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase's Resilience in Illness Model (RIM). Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning, and resilience at baseline (T1), postintervention (T2), and 100 days posttransplant (T3).

Results: At T2, the TMV group reported significantly better courageous coping (Effect Size [ES], 0.505; P = .030). At T3, the TMV group reported significantly better social integration (ES, 0.543; P = .028) and family environment (ES, 0.663; P = .008), as well as moderate nonsignificant effect sizes for spiritual perspective (ES, 0.450; P = .071) and self-transcendence (ES, 0.424; P = .088).

Conclusions: The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high-risk cancer treatment. We recommend the TMV be examined in a broader population of AYAs with high-risk cancers.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1002/cncr.28355DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947727PMC
March 2014

From qualitative work to intervention development in pediatric oncology palliative care research.

J Pediatr Oncol Nurs 2013 May-Jun;30(3):153-60. Epub 2013 Apr 30.

Vanderbilt University School of Nursing, Nashville, TN 37240, USA.

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.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454213487434DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808110PMC
November 2013

Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors.

J Spec Pediatr Nurs 2013 Apr 24;18(2):144-57. Epub 2013 Mar 24.

Center for Cancer and Blood Disorders, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA.

Purpose: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors.

Design And Methods: From 1990 to 2005, a retrospective chart review was performed related to specified outcomes for 166 children with admission for pediatric brain tumors.

Results: Patients who received the EOL program were hospitalized less often (n = 114; chi-square = 5.001 with df = 1, p <.05) than patients who did not receive the program.

Practice Implications: An EOL program may improve symptom management and decrease required hospital admissions for children with brain tumors.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/jspn.12024DOI Listing
April 2013

Asking next-of-kin of recently deceased cancer patients to take part in research: 11 of 20 surveyed found it a positive experience.

Evid Based Nurs 2013 Apr 9;16(2):64-5. Epub 2012 Nov 9.

School of Nursing, Vanderbilt University, 461 21st Avenue, Nashville, TN 37240, USA.

Implications for practice and research: These results will aid the development of protocols for screening bereaved individuals who are eligible for study participation. These results provide insight into bereaved participants' preferences for data collection methods (e.g., face-to-face, phone and self-completion postal surveys). The needs of non-cancer-related deaths and paediatric populations (e.g., bereaved child participants; childhood deaths) need consideration in future studies.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1136/eb-2012-100955DOI Listing
April 2013

Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer.

J Pediatr Health Care 2013 Nov-Dec;27(6):434-42. Epub 2012 Jun 2.

Introduction: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART).

Methods: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer.

Results: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study.

Discussion: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedhc.2012.04.010DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448870PMC
April 2014

Parental perspectives of initial end-of-life care communication.

Int J Palliat Nurs 2007 Nov;13(11):522-31

Barnes-Jewish College of Nursing, St Louis, MO, USA.

Significance: an important research priority is to explore parents' perspectives of the introduction of end-of-life care (EOL) options for a dying child by their health care provider.

Aims: to examine parents' perspectives of: (1) the timing and method used by health care providers to introduce EOL options for their child and (2) what their preference would have been regarding the selected time and method to introduce EOL options.

Design: retrospective, descriptive study.

Analysis: qualitative method, content analysis.

Results: the retrospective study design gave parents the ability to reflect on what was helpful or harmful when health care providers introduce or discuss palliative and end-of-life care options for the dying child. Important suggestions were shared regarding when this information should be discussed with the parents of a child with a life-threatening illness.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.12968/ijpn.2007.13.11.27587DOI Listing
November 2007