Parental Treatment Decision Making in Pediatric Oncology
Seminars in Oncology NursingPublished 1 May 2005
Janet L. Stewart, Kimberly A. Pyke‐Grimm, Katherine Patterson Kelly
Citations54
SJR quartileQ2
SJR score0.65
SNIP0.77
Generate an AI Snapshot to get a quick, structured summary of this paper.
Study Snapshot
ObjectiveStudy objective
MethodsResearch methodology
PopulationPopulation studied
Sample sizeSample sizes
OutcomesStudy outcomes here
ResultsStudy results comes here
LimitationsResearch study limitations comes here
A concise AI-generated summary of the paper will appear here once you click Generate AI Snapshot.
TL;DR
Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences.
Abstract
Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences.
Keywords
MedicineHealth Professions
Contemporary Sociology A Journal of ReviewsBasics of Qualitative Research: Grounded Theory Procedures and Techniques.
29,422 Citations1992Carolyn Ellis, Anselm Strauss +1 more
Basics of qualitative research
10,029 Citations1990Anselm L. Strauss
Medical Decision MakingValidation of a Decisional Conflict Scale
2,454 Citations1995Annette M. O’Connor
The psychometric properties of a decisional conflict scale (DCS) that elicits health-care consumers' uncertainty in making a health-related decision and the factors contributing to the uncertainty are acceptable.
JAMAInformation Needs and Decisional Preferences in Women With Breast Cancer
1,116 Citations1997Lesley F. Degner
Priorities for information identified in this study provide an empirical basis to guide communication with women seeking care for breast cancer and suggest systematic approaches to assess and respond to women's desired level of participation in treatment decision making need to be evaluated.
Journal of Clinical EpidemiologyDecision making during serious illness: What role do patients really want to play?
1,009 Citations1992Lesley F. Degner, Jeffrey A. Sloan
It is suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate, and the majority of patients and members of the public wanted their physician and family to share responsibility for decision making if they were too ill to participate.
BMJDecision aids for patients facing health treatment or screening decisions: systematic review
877 Citations1999Annette M. O’Connor, Alaa Rostom +7 more
Cancer NursingTreatment decision making in women newly diagnosed with breast cancer
275 Citations1996Kinta Beaver, Karen Luker +4 more
The majority of the newly diagnosed women preferred to play a passive role in treatment decision making, leaving the decision-making responsibility to their physician, whereas the benign control group preferred a collaborative role in which joint decisions could be made between the patient and the physician.
PubMedInformation and decision-making preferences of men with prostate cancer.
268 Citations1995B. Joyce Davison, Lesley F. Degner +1 more
Although the majority of men in this sample wanted their physician to make final treatment decisions, they did want to be informed and information preferences were similar to other groups of patients with cancer.
Journal of Clinical OncologyTreatment Decision Making in Early-Stage Breast Cancer: Should Surgeons Match Patients' Desired Level of Involvement?
268 Citations2002Nancy L. Keating
Patients whose reported actual role in decision making matched their desired role were more satisfied with their treatment choice than other patients, suggesting that women with early-stage breast cancer may benefit from surgeons' efforts to identify their preferences for participation in decisions and tailor the decision-making process to them.
Journal of Clinical OncologyLiving With Treatment Decisions: Regrets and Quality of Life Among Men Treated for Metastatic Prostate Cancer
231 Citations2001Jack A. Clark, Nelda P. Wray +1 more
Regret was substantial and associated with treatment choice and quality of life and may derive from underlying psychosocial distress and problematic communication with physicians when decisions are being reached and over subsequent years.
Cancer NursingAssessing Information and Decision Preferences of Men With Prostate Cancer and Their Partners
229 Citations2002B. Joyce Davison, Martin Gleave +4 more
The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples and an individualized approach is suggested, given the high reliability of individual’s profiles.
Archives of Family MedicineThe Effects of Patient Communication Skills Training on Compliance
199 Citations2000Donald J. Cegala
Training patients in communication skills may be a cost-effective way of increasing compliance and improving the overall health of patients.
Social Science & MedicineWhen is a shared decision not (quite) a shared decision? Negotiating preferences in a general practice encounter
157 Citations1999Richard Gwyn, Glyn Elwyn
It is illustrated how a general practitioner's (GP's) efforts to reach a 'shared decision' come unstuck through a combination of the embedded power imbalance and the conflict between the GP's own prescription preferences and those of the parent.
Cancer NursingEnd-of-Life Decision Making by Adolescents, Parents, and Healthcare Providers in Pediatric Oncology
153 Citations2001Pamela S. Hinds, Linda L. Oakes +5 more
The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology, which offer assistance in a structured manner that can be formally evaluated and individualized to meet patient and family needs.
Quality of Life ResearchElectronic collection of health-related quality of life data: Validity, time benefits, and patient preference
153 Citations2001Brent D. Bliven, Stanley E. Kaufman +1 more
This pilot study suggests that HRQOL measures can be reliably collected using software operating over the World Wide Web, and data collected in this manner are valid and of comparable quality to self-reported,HRQOL data obtained via paper survey.
Image the Journal of Nursing ScholarshipGuarded Alliance: Health Care Relationships in Chronic Illness
150 Citations1989Sally Thorne, Carole A. Robinson
A multiphase, qualitative study of ongoing health care relationships from the perspective of the chronically ill patient and family confirmed that such relationships evolve over time through three predictable stages: naïve trust, disenchantment and guarded alliance.
The American journal of pediatric hematology/oncologyDiagnosis, Disclosure, and Informed Consent: Learning From Parents of Children With Cancer
149 Citations2000Rachel Levi, Rebecca Marsick +2 more
Journal of Pediatric Oncology NursingPreferences for Participation in Treatment Decision Making and Information Needs of Parents of Children With Cancer: A Pilot Study
140 Citations1999Kimberly A. Pyke‐Grimm, Lesley F. Degner +2 more
The results showed that parents had systematic preferences about TDM, preferring collaborative followed by passive and active roles, and that parents as a group do not have uniform information needs.
PubMedUncertainty in childhood illness: a synthesis of the parent and child literature.
130 Citations2000Stewart Jl, Mishel Mh
Findings from 44 reports of parental uncertainty and 12 reports of children's uncertainty were reviewed to determine what is currently known about uncertainty in the context of acute and chronic childhood illness.
Behavior Research Methods, Instruments, & ComputersPersonality research on the Internet: A comparison of Web-based and traditional instruments in take-home and in-class settings
123 Citations2002Brian C. Cronk, Jamie L. West
Investigating the differences between Web-based data and data collected with more traditional methods found that different modes of administration may affect subject attrition and may, therefore, confound investigations of other independent variables.
Research in Nursing & HealthHealth care relationships: The chronic illness perspective
123 Citations1988Sally Thorne, Carole A. Robinson
This study combined data from two separate qualitative investigations to yield an analysis of relationships between health care providers and health care recipients from the perspective of family members involved with chronic illness.
Educational and Psychological MeasurementComputerized and Paper-and-Pencil Versions of the Rosenberg Self-Esteem Scale: A Comparison of Psychometric Features and Respondent Preferences
123 Citations2001Walter P. Vispoel, Jaeyool Boo +1 more
Evaluated characteristics of computerized and paper-and-pencil versions of the Rosenberg Self-Esteem Scale showed that administration mode had little effect on the psychometric properties of the SES but that the computerized version took longer and was preferred by examinees.
PubMedDecision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer.
118 Citations1997Pamela S. Hinds, L Oakes +10 more
It is found that once parents conclude that their child can not get better, they are more likely to choose noncurative options such as choosing no further treatment or withdrawing life support.
Research and Theory for Nursing PracticeUncertainty in Childhood Illness: A Synthesis of the Parent and Child Literature
113 Citations2000Janet L. Stewart, Merle H. Mishel
Findings from 44 reports of parental uncertainty and 12 reports of children’s uncertainty were reviewed to determine what is currently known about uncertainty in the context of acute and chronic childhood illness.
Nursing ResearchPatient Decision-making Behavior
109 Citations2001Penny F. Pierce, Frank D. Hicks
The purpose of this review is to provide a framework for those interested in pursuing patient decision-making investigations and suggest ways in which current knowledge can be extended to develop a scientific platform upon which to build decision support interventions.
Journal of Health Services Research & PolicyEvaluating Interventions to Promote Patient Involvement in Decision-Making: By What Criteria Should Effectiveness be Judged?
108 Citations1998Vikki Entwistle, Amanda Sowden +1 more
In the context of health care systems which aim primarily to improve health status and well-being, health outcomes should take priority over process variables such as decision-making behaviours and patients' knowledge.
European Journal of PediatricsDeciding on treatment limitation for neonates: the parents' perspective
104 Citations2001Hazel E McHaffie, Andrew Lyon +1 more
The majority of parents wish to be active in decision making on behalf of their baby and doing so does not appear to have adverse consequences, and the pacing of events in the process of deciding and managing the dying is critical.
CancerInformed consent in the childrens cancer group
94 Citations1998Eric Kodish, Rebecca D. Pentz +5 more
This work has shown that informed consent is critical to the ethical conduct of pediatric cancer clinical research and the current level of research regarding such consent is limited.
Journal of Clinical OncologyGroups Potentially at Risk for Making Poorly Informed Decisions About Entry into Clinical Trials for Childhood Cancer
84 Citations2003Christian Simon, Stephen J. Zyzanski +4 more
This research hypothesizes that factors such as social and educational status and the role of language interpreters may account for significant differences in the discussion and understanding of an RCT among the three groups of non-English-speaking Latino parents of children with leukemia.
Psycho-OncologyParents' decision‐making preferences in pediatric oncology: The relationship to health care involvement and complementary therapy use
82 Citations2003Elizabeth Gagnon, Christopher J. Recklitis
Findings indicate that parents' decisions to use CT for their child are related in part to individual health care preferences, and provide validation for the newly developed CPS‐P.
Archives of Disease in Childhood Fetal & NeonatalDo Not Resuscitate orders and ethical decisions in a neonatal intensive care unit in a Muslim community
82 Citations2002David E. da Costa, H Ghazal +1 more
A prospective evaluation of all DNR decisions in the neonatal intensive care unit at the Royal Hospital in Oman over a one year period between November 1999 and October 2000 found presence of extended family support (grandparents and clergy) and clergy was extremely useful.
Developmental Medicine & Child NeurologyMothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty
82 Citations2003Denise N. Guerriere, Patricia McKeever +2 more
Results indicate that mothers’ decisions about G‐tube insertion are complex and difficult, and it is recommended that health care professionals implement interventions focused on minimizing uncertainty.
Journal of Family NursingInvolvement in Health Care Decisions: Parents and Children with Chronic Illness
80 Citations1996Denise B. Angst, Janet A. Deatrick
Dimensional analysis was used to summarize and contrast the data according to child, adolescent, and parent perspectives across the two data sets, and the type of decision, view of the decision, involvement in the decision-making process, and satisfaction with the decisions were themes common to both data sets.
Journal of Advanced NursingDeterminants of parental decisions on ‘drop out’ from cancer treatment for childhood cancer patients
78 Citations1999Chao‐Hsing Yeh, Chiou‐Fen Lin +3 more
Findings reflected the deficiency of psychological and emotional support for parents from health care professionals prior to and during cancer treatment, and the determinants of parental decisions on drop out.
Pediatric Hematology and OncologyADAPTATIONAL PROCESS OF PARENTS OF PEDIATRIC ONCOLOGY PATIENTS
78 Citations2000Chao-Hsing Yeh, Ting‐Ting Lee +2 more
The findings suggest that parents adapt to their children's cancer by a dynamic process; i.e., they modify their coping tasks and related strategies as clinical events occur.
Developmental Medicine & Child NeurologyMothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty
76 Citations2003Denise N. Guerriere, Patricia McKeever +2 more
Results indicate that mothers' decisions about G-tube insertion are complex and difficult, and it is recommended that health care professionals implement interventions focused on minimizing uncertainty.
Nursing ResearchComing to Terms: Parents' Response to a First Cancer Recurrence in Their Child
71 Citations1996Pamela S. Hinds, Linda K. Birenbaum +8 more
PubMedInvestigating patients' preferences for different treatment options.
66 Citations1997Hilary A. Llewellyn‐Thomas
The probability trade-off seems to be a particularly promising technique not only for incorporating patients' preferences into the design of clinical trials, but also for helping patients to comprehend important probabilistic information and then use that information to clarify and communicate their values to the health-care team.
Journal of Pediatric Oncology NursingInformed Consent for Treatment of Childhood Cancer: Factors Affecting Parents' Decision Making
61 Citations1991Kathy Ruccione, Robin F. Kramer +2 more
Results of the study confirmed clinical experience that parents are given complex information and asked to make decisions about their child's life in a highly anxious state and were generally satisfied with the informed consent process 48 hours after signing a consent form.
Public Health NursingMothers' Decision‐Making Processes Regarding Health Care for Their Children
60 Citations2001Gloria J. Gross, Mabel Howard
There were no significant differences in decision-making processes by first time mothers and by mothers with more than one child, and Implications include teaching mothers assessment skills to identify serious versus nonserious situations and to utilize other social supports.
Cancer PracticeParents' Perceptions of Randomization in Pediatric Clinical Trials
53 Citations1999Frances M. Wiley, Kathy Ruccione +8 more
What most distinguished parents who refused from those who accepted randomization was not their knowledge and information about randomized clinical trials, and the majority of QIs that accurately predicted acceptors and refusers involved parents' beliefs, values, and perceptions.
Journal of Family NursingUnifying Concepts in Parents' Experiences with Health Care Providers
42 Citations1996Donna M. Dixon
A historical overview of the research related to parent and nurse interaction in the context of an acutely ill hospitalized child provides the pediatric nurse with information about parent needs, stressors, and activities that can guide both practice and future research.
Journal of Family NursingChildren in Research: Fathers in Cancer Research—Meanings and Reasons for Participation
37 Citations2001Joan Liaschenko, Sandra Millon Underwood
The meanings of research and reasons for participation among fathers whose children were engaged in clinical cancer research revealed the contribution of data and the effect of the intervention on the body of the child reflected the research design of survey and experimental or randomized controlled clinical trials.
Journal of Family NursingChildren in Research: Informed Consent and Critical Factors Affecting Mothers
35 Citations2001Pamela K. Pletsch, Patricia E. Stevens
Results suggest four critical factors that differentiated and defined mothers’ informed consent experiences: immediacy of the threat to the life of the child, trajectory of illness-related events, opportunities for autonomy, and expertise of mothers in managing their child’s illness and in negotiating the health care system.
Children s Health CareParent and Health Care Provider Communication and Decision Making in the Intensive Care Nursery
34 Citations1989Harriet Able-Boone, Paul R. Dockecki +1 more
Investigation of parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery raises concerns regarding the provision of medical information to parents in an understandable manner and the possibility that parents' emotional involvement interferes with their understanding of the child's condition.
Journal of Family NursingMajor Themes in Parent-Provider Relationships: A Comparison of Life-Threatening and Chronic Illness Experiences
32 Citations1996Mark Kirschbaum, Kathleen A. Knafl
The nature and quality of parent-professional relationships in two contrasting illness situations was explored, and data analysis revealed three patterns of decision making across parents in the two illness situations: dependent, independent, and collaborative.
PubMedSynchrony in adolescence.
28 Citations1995Li Chu, Peter A. Powers
A life-span view of development allows the concept of synchrony to be extended to the stage of adolescence, providing clues to how developmental mismatches occur between adolescents, teachers, and parents as well as useful guidelines for the prevention and remediation of such mismatches.
Cancer NursingCE TEST: End–of–Life Decision Making by Adolescents, Parents, and Healthcare Providers in Pediatric Oncology
28 Citations2001Pamela S. Hinds
Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers, but no empirically developed and validated guidelines exist.
Journal of Pediatric NursingFactors influencing parent decision making about pediatric cardiac transplantation
27 Citations1996Sarah S. Higgins, Jeanie Kayser‐Jones
Investigation of factors that influenced 15 parental decision-making situations regarding pediatric heart transplantation for children with end-stage heart disease found Pediatric nurses have central roles in facilitating parent-health professional communication in complex decision making concerning treatment alternatives of children.
Patient Education and CounselingSubstitute decision-making: measuring individually mediated sources of uncertainty
10 Citations2001Denise N. Guerriere, Hilary A. Llewellyn‐Thomas
A quantitative/qualitative hybrid approach may be clinically useful for assessing individually mediated factors contributing to decision uncertainty, and for evaluating therapeutic interventions in other substitute decision-making contexts.
PubMedChallenges of decision making for families of children with single or multiple chronic conditions.
8 Citations2000Denise Gruccio, Linda Steinkrauss
Understanding the family and their previous experience is crucial to determine how nurse practitioners can best tailor interventions to promote effective decision making.
Children s Health CareImpact of Parental Involvement in Life-Support Decisions: A Qualitative Analysis of Parents' Adjustment Following Their Critically Ill Child's Death
6 Citations2001Elizabeth Votta, Renée‐Louise Franche +4 more
A significantly greater number of parents whose child died following an LSW decision were certain about their child's future health; believed that theirChild's quality of life would have been unacceptable; and reported less dissatisfaction with time spent with their child, fewer negative changes in family functioning, and more positive changes in feelings toward staff.