Other TitlesPromotion of Comfort through Early Palliative Care Consultation for Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation (HSCT): Feasibility of Implementation and Evaluation of a Proposed Practice Change
AbstractPurpose: The purpose of this project was to investigate the feasibility of a proposed practice change to integrate early palliative care consultation that would promote transcendent comfort in children and adolescents with advanced or high-risk cancers or other non-malignant diseases undergoing hematopoietic stem cell transplantation (HSCT). Background and Significance: Hematopoietic stem cell transplantation (HSCT), a modality used to treat a variety of advanced cancers and other serious non-malignant diseases in children and adolescents, may have significant symptom distress. The goal of enhanced comfort is the utmost concern of children and adolescents undergoing HSCT and their families (Mayer, Tighouart, Terrin, Stewart, Peterson, Jeruss, & Parsons, 2009). Multiple pediatric professional organizations have set a standard to promote relief of symptom distress and promote quality of life and enhanced comfort (AAP, 2000; Freibert & Huff, 2009). Clinical research on the effectiveness and benefits of interventions to relieve symptom distress is paramount to expanding the evidence base of pediatric palliative care and the science of HSCT in prioritizing comfort. Methods: A single-site, feasibility study was used to examine the primary aims of (1) willingness of patients and families of a vulnerable population to receive the palliative care intervention, (2) willingness of the health care team to refer families, (3) resource allocation, and (4) family and provider satisfaction. Secondary aims included evaluation and concordance of comfort from parent and child perspectives. A convenience sample of 12 families (child undergoing HSCT and their parent) were enrolled on the study. Data collection included referral and enrollment patterns, and time and resources required for palliative care interventions. Additional data included child self-report and parental reports of their child's comfort at baseline, T1 (~14 days following HSCT), and T2 (~ 30 days following HSCT). Family and provider satisfaction were measured at the end of enrollment. Findings: 100% of eligible families were referred and consented to participate (N = 12). Each family received a minimum of one visit per week, however, an average of 3 visits per week were made. Visits ranged from 15 minutes to 2 hours, depending upon individual circumstances. The top interventions requested or required, in addition to standard HSCT care interventions, included supportive care counseling, massage therapy, aromatherapy, play therapy, acupuncture, acupressure, and other integrative medicine techniques. Children and adolescents consistently rated comfort as "very good", however, parents tended to rate their child's level of comfort lower. There were 3 deaths of participants during the study. Families and providers expressed high satisfaction with this approach to care. Conclusion: This intervention is a novel approach to providing early palliative care services with curative intent therapy. Early palliative care intervention was well received by providers and families of children undergoing HSCT. Parents rate their child's level of comfort somewhat lower than child self-report, however, distress of parents impacts the entire family system thus interventions aimed at improving the child's comfort may improve parental distress and support better family functioning. Early palliative care services helped palliative care practitioners better meet the needs of the families who experienced the death of their child. Because of this additional support, end of life was peaceful and coordinated. This approach to care will be integrated as a standard of care for HSCT at the study site.
Table of ContentsAbstract; Section One; Background; Definition of the Concepts; Suffering; Comfort and Transcendence; Exploration of Comfort in Children with Advanced Illness; Significance of the Problem; The Practice Problem; The Clinical Research Hypothesis; Theoretical Framework; Nightingale's Grand Theory; Kolcaba's Comfort Theory; Intervention Related to Conceptual Framework; Redefining the Conceptual Framework in Context; Redefining the Operational Definitions in Context; Research Question; Intervention; Significance of the Project; Anticipated Outcomes; Summary; Section Two; Using the PICO Format as a Framework to Search the Literature; The Search for Evidence; Key Words and MeSH Terms; Inclusion Criteria; Exclusion Criteria; Review of the Evidence; Synthesis of the Evidence; Symptom Distress in Advanced Pediatric Cancers or Serious Non-malignant Diseases; Symptom Distress in Hematopoietic Stem Cell Transplantation; Health Related Quality of Life; Pediatric Palliative Care as an Intervention; Summary; Section Three; Methodology; Design; Aims; Sample; Inclusion Criteria; Sample Demographics; Setting; Measures and Analysis of Procedures; Variables; Instrumentation; Time and Activity Log 51 Palliative Care Consultation in Pediatric Stem Cell Transplant; PANDA Care Team Family and Provider Survey; General Comfort Questionnaire – Parent/Guardian Form; Children's Comfort Daisies and Comfort Line VAS; Data Collection Procedures; Participant Identification; Participant Recruitment and Enrollment; Palliative Care Interventions; Assessment of Comfort; Assessment of Satisfaction; Human Subject Considerations; Summary; Section Four; Data Quality Assurance Procedures; Analysis and Results; Demographic Data; Primary Aims of Recruitment, Availability of Interventions, Staffing Metrics, 63 and Satisfaction Aim #1a Recruitment; Aim #1b Availability of Interventions; Aim #1c Staffing Metrics; Aim # 2 Satisfaction; Secondary Aims of Comfort and Concordance of Child Self-Report with Parent; Report - Aim #1 Child Self-Report of Comfort; Child Self-Report of Comfort Over Time; Comparison of Child Self-Report of Comfort by; Diagnosis and Type of HSCT Parental Report of Their Child's Comfort; Parental Baseline Report of Their Child's Comfort; Parental Baseline Report of Their Child's Comfort By Diagnosis and Type of HSCT; Parental Report of Their Child's Comfort at T1; Parental Report of Their Child's Comfort at T1 by Diagnosis and Type of HSCT; Parental Report of Their Child's Comfort at T2; Parental Report of Their Child's Comfort at T2 by Diagnosis and Type of HSCT; Parental Report of Their Child's Comfort Over Time; Parental Report of Physical, Psychospiritual, Environmental and Sociocultural Subscales; Aim #2 Concordance of Child and Parent Reports of Comfort; Assumptions; Limitations and Threats to Validity; Section Five 82 Discussion; Link of Conceptual Framework to this Study; Health Care Needs and Comforting Interventions; Intervening Variables; Promotion of Enhanced Comfort and Health Seeking Behaviors; Palliative Care Consultation in Pediatric Stem Cell Transplant; Institutional Integrity; Outcomes; Plans for Translation into Practice; Considerations of credibility and feasibility; Plans for dissemination; Role of DNP; Summary; References; Tables, Figures, and Appendices; Table 1 Taxonomy of Comfort; Table 2 Definitions of Key Terms; Table 3 Comfort Theory & Assumptions in Context of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation; Table 4 Demographic Characteristics; Table 5 Palliative Care Interventions Requested by Patients and Families; Table 6 Descriptive Statistics for Self-Report of Comfort of Child at Baseline, Time 1, and Time 2; Table 7 Descriptive Statistics for Child Self-Report of Comfort Related to Diagnosis and Type of HSCT; Table 8 Descriptive Statistics for Parental Report of Their Child's Comfort; Table 9 Descriptive Statistics for Family Satisfaction; Table 10 Descriptive Statistics for Provider Satisfaction; Table 11 Differences in Satisfaction Across Types of HSCT Providers; Figure 1 Original Conceptual Framework for Comfort Theory; Figure 2 Operationalization of Kolcaba’s Comfort Theory to Children and Adolescents with Life-Limiting Cancers and their Families; Appendix I Overall Evidence Summary 128 Appendix II Individual Summary of the Evidence; Appendix III Study Participant Log & Demographic Data Collection Tool; Appendix IV Time and Activity Log; Appendix V PANDA Care Team Family Survey; Appendix VI PANDA Care Team Provider Survey; Appendix VII General Comfort Questionnaire – Parent/Guardian Form; Appendix VIII Children's Comfort Daisies Scale; Appendix IX Comfort Line Visual Analog Scale; Appendix X Institutional Review Board Approval.
DescriptionUniversity of Maryland, Baltimore. Doctor of Nursing Practice Scholarly Project
KeywordPain in children
Hematopoietic Stem Cell Transplantation
Identifier to cite or link to this itemhttp://hdl.handle.net/10713/1722
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