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Consensus Statement: Parental Treatment Decision Making in Pediatric Oncology
Seminars in Oncology Nursing, Vol 21, No 2, Suppl 2 (May), 2005: pp 105-106
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CONSENSUS STATEMENT: PARENTAL TREATMENT DECISION MAKING IN PEDIATRIC ONCOLOGY KRISTIN A. STEGENGA, JANET A. DEATRICK, DENNIS DROTAR, KATHERINE PATTERSON KELLY, JANE MEZA, KIMBERLY A. PYKE-GRIMM, JANET L. STEWART, OCTAVIO ZAVALA
P
arents acting as surrogate decision makers for their child with cancer make life-altering decisions on behalf of their child during periods of extraordinary stress. Little is known about the specific issues surrounding the treatment decision-making (TDM) process as it applies to parents acting on behalf of their ill minor child. A recent study by Kodish et al1 concluded that 50% of parents who made decisions about their child’s entry into a randomized clinical trial did not understand randomization. These results are concerning and highlight the need to explore the process by which parents gain knowledge and make decisions regarding standard and researchrelated cancer treatment. The same study concluded that specific clinical trial details and the presence of a nurse during education were associated with better understanding by parents. The context of childhood cancer contributes additional layers of complexity to parental treatment decision making; such as multiple participants and perspectives, changing family dynamics, the developing child, and an unpredictable illness trajectory. Each family experiences cancer in their child while at different points of family development. After the initial diagnosis, treatment decisions continue throughout the illness trajectory. Therefore, research in this area must consider individual families as uniquely situated within their life course and define interactions
AND
among individuals and families over time and under changing historical conditions.2 Research in childhood cancer treatment decision making has typically focused on diagnosis or end-of-life concerns. There is much less known about critical decision making points along the illness continuum and very little appreciation of the outcomes of treatment decision making for parents and families. These gaps underscore the need for additional longitudinal descriptive research. Further research is needed to determine whether parents’ preferred TDM roles (passive, collaborative, or active) are congruent with the actual roles assumed during the TDM process, and whether preferred role, assumed role, or congruence between them has the greatest influence on outcomes. Initial descriptive work has been performed by Pyke-Grimm, Degner, Small, and Mueller.3 Potential parental TDM outcomes have not been systematically studied but may include satisfaction with the decision, decisional regret, uncertainty, or post-traumatic stress. These concepts have not been systematically studied. In fact, little is known about what parents see as a decision, how they manage decisions, and their consequences. A conceptual model is currently being developed by Stewart, Pyke-Grimm, and Kelly (elsewhere in this issue). This model will illuminate additional research questions as infor-
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mation is uncovered regarding key areas in the decision-making process that may prove amenable to intervention.
RESEARCH PRIORITIES (1) The natural history of decision making within the framework of childhood cancer treatment has not been well-delineated. Further research should focus on description of the decision-making process and identification of areas for intervention. (2) There is currently a gap in the literature regarding the possible role that culture and family beliefs play in the decision-making process. Seeking diversity within future study populations will aid in establishing culturally valid interventions because cultural differences in the approach to TDM might alter the type of intervention undertaken. Partnering with researchers who are expert with culturally diverse populations and who are able to speak languages other than English will help to illuminate this important area. (3) The voice of the child/adolescent in decisionmaking research is largely absent. The authors recognize that issues of development, maturation, and competence within the adolescent population deserve separate exploration. While the initial efforts in this program of research will focus on the role of the parent
as surrogate decision maker for the younger child, future research will focus on the important area of adolescent participation in the TDM process. (4) A continued focus on a conceptually based, theory-driven approach to research in this area, with concentration on refining the conceptual model as more becomes known, will add strength to future testing of theory-based interventions that are tailored to the needs of various family and child decision-making styles. (5) Of key importance is the impact of TDM on the parent and family. Further study with follow-up of parents over time should focus on the effects that TDM has on the family unit. (6) Transdisciplinary collaborative research efforts with psychology, social work, medicine, and other disciplines dedicated to the care of children with cancer will build a stronger knowledge base and potentially delineate issues that might not have otherwise been explored. Collaborations within research organizations such as the Children’s Oncology Group will also serve to hasten the progress of this research. The results from further study in these areas will ultimately be used to effect clinical practice and inform decision-making policy.
REFERENCES 1. Kodish E, Eder M, Noll R, et al. Communication of randomization in childhood leukemia trials. JAMA 2004;291:470-475. 2. Hareven TK. Life course, In Birren JE (editor): Encyclopedia of Gerontology. San Diego, CA: Academic Press; 1996:31-40.
3. Pyke-Grimm KA, Degner L, Small A, Mueller B. Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study. J Pediatr Oncol Nurs 1999;16:13-24.
Kristin A. Stegenga, RN, PCNS: Children’s Mercy Hospital, Kansas City, MO. Janet Deatrick, RN, PhD: Associate Professor, University of Pennsylvania School of Nursing, Philadelphia, PA. Dennis Drotar, PhD: Director, Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children’s Hospital, Cleveland, OH. Katherine Patterson Kelly, MN, RN: Clinical Nurse Specialist, Pediatric Hematology Oncology, Children’s Hospital, University of Missouri Health Care, Columbia, MO. Jane Meza, PhD: Assistant Professor, Department of Preventive and Societal Medicine, University of Nebraska Medical Center, Omaha, NE. Kim Pyke-Grimm, MN, RN: Nurse Researcher, San Diego Children’s Hospital, San Diego, CA. Janet Stewart, PhD, RN: Assistant Professor, Department of Health Promotion and Development, University of Pittsburgh, School of Nursing, Pittsburgh, PA. Octavio Zavala, BS: Childrens Hospital Los Angeles, Los Angeles, CA. Address correspondence to Kristin A. Stegenga, RN, PCNS, Children’s Mercy Hospital, 2401 Gillham Road, Kansas City, MO 64108; e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.006
105
CONSENSUS STATEMENT: PARENTAL TREATMENT DECISION MAKING IN PEDIATRIC ONCOLOGY KRISTIN A. STEGENGA, JANET A. DEATRICK, DENNIS DROTAR, KATHERINE PATTERSON KELLY, JANE MEZA, KIMBERLY A. PYKE-GRIMM, JANET L. STEWART, OCTAVIO ZAVALA
P
arents acting as surrogate decision makers for their child with cancer make life-altering decisions on behalf of their child during periods of extraordinary stress. Little is known about the specific issues surrounding the treatment decision-making (TDM) process as it applies to parents acting on behalf of their ill minor child. A recent study by Kodish et al1 concluded that 50% of parents who made decisions about their child’s entry into a randomized clinical trial did not understand randomization. These results are concerning and highlight the need to explore the process by which parents gain knowledge and make decisions regarding standard and researchrelated cancer treatment. The same study concluded that specific clinical trial details and the presence of a nurse during education were associated with better understanding by parents. The context of childhood cancer contributes additional layers of complexity to parental treatment decision making; such as multiple participants and perspectives, changing family dynamics, the developing child, and an unpredictable illness trajectory. Each family experiences cancer in their child while at different points of family development. After the initial diagnosis, treatment decisions continue throughout the illness trajectory. Therefore, research in this area must consider individual families as uniquely situated within their life course and define interactions
AND
among individuals and families over time and under changing historical conditions.2 Research in childhood cancer treatment decision making has typically focused on diagnosis or end-of-life concerns. There is much less known about critical decision making points along the illness continuum and very little appreciation of the outcomes of treatment decision making for parents and families. These gaps underscore the need for additional longitudinal descriptive research. Further research is needed to determine whether parents’ preferred TDM roles (passive, collaborative, or active) are congruent with the actual roles assumed during the TDM process, and whether preferred role, assumed role, or congruence between them has the greatest influence on outcomes. Initial descriptive work has been performed by Pyke-Grimm, Degner, Small, and Mueller.3 Potential parental TDM outcomes have not been systematically studied but may include satisfaction with the decision, decisional regret, uncertainty, or post-traumatic stress. These concepts have not been systematically studied. In fact, little is known about what parents see as a decision, how they manage decisions, and their consequences. A conceptual model is currently being developed by Stewart, Pyke-Grimm, and Kelly (elsewhere in this issue). This model will illuminate additional research questions as infor-
106
STEGENGA ET AL
mation is uncovered regarding key areas in the decision-making process that may prove amenable to intervention.
RESEARCH PRIORITIES (1) The natural history of decision making within the framework of childhood cancer treatment has not been well-delineated. Further research should focus on description of the decision-making process and identification of areas for intervention. (2) There is currently a gap in the literature regarding the possible role that culture and family beliefs play in the decision-making process. Seeking diversity within future study populations will aid in establishing culturally valid interventions because cultural differences in the approach to TDM might alter the type of intervention undertaken. Partnering with researchers who are expert with culturally diverse populations and who are able to speak languages other than English will help to illuminate this important area. (3) The voice of the child/adolescent in decisionmaking research is largely absent. The authors recognize that issues of development, maturation, and competence within the adolescent population deserve separate exploration. While the initial efforts in this program of research will focus on the role of the parent
as surrogate decision maker for the younger child, future research will focus on the important area of adolescent participation in the TDM process. (4) A continued focus on a conceptually based, theory-driven approach to research in this area, with concentration on refining the conceptual model as more becomes known, will add strength to future testing of theory-based interventions that are tailored to the needs of various family and child decision-making styles. (5) Of key importance is the impact of TDM on the parent and family. Further study with follow-up of parents over time should focus on the effects that TDM has on the family unit. (6) Transdisciplinary collaborative research efforts with psychology, social work, medicine, and other disciplines dedicated to the care of children with cancer will build a stronger knowledge base and potentially delineate issues that might not have otherwise been explored. Collaborations within research organizations such as the Children’s Oncology Group will also serve to hasten the progress of this research. The results from further study in these areas will ultimately be used to effect clinical practice and inform decision-making policy.
REFERENCES 1. Kodish E, Eder M, Noll R, et al. Communication of randomization in childhood leukemia trials. JAMA 2004;291:470-475. 2. Hareven TK. Life course, In Birren JE (editor): Encyclopedia of Gerontology. San Diego, CA: Academic Press; 1996:31-40.
3. Pyke-Grimm KA, Degner L, Small A, Mueller B. Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study. J Pediatr Oncol Nurs 1999;16:13-24.
Kristin A. Stegenga, RN, PCNS: Children’s Mercy Hospital, Kansas City, MO. Janet Deatrick, RN, PhD: Associate Professor, University of Pennsylvania School of Nursing, Philadelphia, PA. Dennis Drotar, PhD: Director, Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children’s Hospital, Cleveland, OH. Katherine Patterson Kelly, MN, RN: Clinical Nurse Specialist, Pediatric Hematology Oncology, Children’s Hospital, University of Missouri Health Care, Columbia, MO. Jane Meza, PhD: Assistant Professor, Department of Preventive and Societal Medicine, University of Nebraska Medical Center, Omaha, NE. Kim Pyke-Grimm, MN, RN: Nurse Researcher, San Diego Children’s Hospital, San Diego, CA. Janet Stewart, PhD, RN: Assistant Professor, Department of Health Promotion and Development, University of Pittsburgh, School of Nursing, Pittsburgh, PA. Octavio Zavala, BS: Childrens Hospital Los Angeles, Los Angeles, CA. Address correspondence to Kristin A. Stegenga, RN, PCNS, Children’s Mercy Hospital, 2401 Gillham Road, Kansas City, MO 64108; e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.006