- Email: [email protected]
Critique 2: Parental Treatment Decision Making in Pediatric Oncology
CRITIQUE 2: PARENTAL TREATMENT DECISION MAKING
101
REFERENCES 1. Stewart JC, Pyke-Grimm RA, Kelly KP. Parental treatment decision making in pediatric oncology. Semin Oncol Nurs 2005;21:89-97. 2. Pyke-Grimm K, Degner L, Small A, et al. 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. 3. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nur Res 1997;29:21-43. 4. Nobile C, Drotar D. Research on the quality of parent provider communication in pediatric care: Implications and recommendations. J Dev Behav Pediatr 2003;24:279-290. 5. Drotar D, Miller V, Willard V, et al. Correlates of parental participation during informed consent for randomized clinical trials in the treatment of childhood leukemia. Ethics Behav 2004;14:1-15. 6. Dermatis H, Lesko LM. Psychological distress in parents consenting to child’s bone marrow transplantation. Bone Marrow Transplant 1990;6:411-417. 7. Levi RB, Marsick MA, Drotar D, et al. Diagnosis disclosure and informed consent: Learning from parents of children with cancer. J Pediatr Hematol Oncol 2000;22:3-12.
8. Hinds PS, Oakes L, Furman W, et al. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Oncol Nurs Forum 1997;24:1523-1528. 9. Feldman HM, Ploof D, Cohen WI. Physician-family partnerships: The adaptive practice model. J Dev Behav Pediatr 1999;20:111-116. 10. Yeh CN, Lin CF, Tsai JL, et al. Determinants of parental decisions on ‘drop out’ from cancer treatment for childhood cancer patients. J Adv Nurs 1999;30:193-199. 11. Deaton AV. Adaptive noncompliance in pediatric asthma: The parent as expert. J Pediatr Psychol 1985;10: 1-14. 12. Koocher GP, McGrath ML, Gudas IJ. Typologies of nonadherence in cystic fibrosis. J Dev Behav Pediatr 1990;11:353-358. 13. Kodish E, Eder M, Ruccione K, et al. Communication of randomization in childhood leukemia trials. JAMA 2004;291:470-475. 14. Thorne SE, Robinson CA. Guarded alliance: Health care relationships in chronic illness. Image: J Nurs Scholarsh 1989;21:153-157.
Dennis Drotar, PhD: Director, Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children’s Hospital, Cleveland, OH. Address correspondence to Dennis Drotar, PhD, Division of Behavioral Pediatrics and Psychology, Rainbow Babies and Children’s Hospital, 11100 Euclid Ave, MS 6038, Cleveland, OH 44106-6038. e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.004
CRITIQUE 2: PARENTAL TREATMENT DECISION MAKING IN PEDIATRIC ONCOLOGY JANET A. DEATRICK
S
TEWART, Pyke-Grimm, and Kelly’s summary of their emerging research program challenges researchers, clinicians, and educators to address our lack of knowledge in pediat-
ric oncology about parental decision making in contrast to the relatively more developed science regarding adult cancer patients (elsewhere in this issue). Their research program could
102
JANET A. DEATRICK
ultimately yield tested interventions designed to optimize parents’ experiences with making treatment decisions for their child diagnosed with cancer. This critique begins with a description of the importance of this line of inquiry to pediatric health care and concludes with recommendations for future development of the theorectic model and for research refinement.
IMPORTANCE
P
TO THE
FIELD
arental decision-making about their children’s treatment is the cornerstone of children’s health care. Parents are expected to be involved in decision making related to their child’s care; health care providers’ expectation of parental involvement is rooted in their conception of what comprises an ethical, family-centered approach to care.1 While a high value is generally placed on mutual decision making by health care professionals, we know from clinical practice that the preferred and actual roles for parents, children/adolescents (as appropriate), and health care professionals vary across situations and over time. Although parental decision making in pediatric oncology has been investigated over the past decade in descriptive and qualitative studies,2-7 Stewart, Pyke-Grimm, and Kelly are among the first pediatric researchers who are committed to a conceptually based program of research related to parents’ preferences for control over decisions when their child is being treated for cancer. The Parental Treatment Decision-Making model is centered on how much control parents want (control preferences) when decisions need to be made about their child’s medical treatment.8 The relative congruence between the preferred and actual treatment decision-making role (passive, collaborative, or active) is the salient feature of the decisionmaking process and influences decisional outcomes.9 The Parental Treatment Decision-Making model draws on four theoretical foundations, the first of which is the work of Degner,8 who developed the concept of control preferences in research with adults who have cancer. Pyke-Grimm, Denger, Small, and Mueller9 adapted it for use in the Parental Treatment Decision-Making model. The second source is the qualitative research of Thorne and Robinson,10,11 who described the process of parents and health care providers estab-
lishing a guarded alliance during the course of a chronic illness. This means that preferences for involvement in decision making may be influenced by the timing and degree of trust between providers and parents. The third source, the Interactive Model of Synchrony, suggests that increased participation in treatment decision making by parents of children with cancer, which is marked by mutual and responsive interactions, leads to better parental adjustment and better psychological outcomes.12 This model implies that the most positive outcomes from decision making result from active parental participation or from congruence between preferred and actual treatment decision-making roles. The fourth source is the work of O’Connor,13 that indicates a state of uncertainty is aroused when choices, in this case about one’s child, involve risk, loss, regret, or challenge to personal values. Thus, decision making is conceptualized as an interpersonal process, marked by uncertainty and changes over time, as well as various preferences and outcomes. Decision-making contextual factors deduced from these four theoretical sources are seen as influencing the preferred treatment decision-making role. Contextual factors include illness factors (prognosis/severity of illness and uncertainty), personal factors (educational level, distress, knowledge/experience), and relationship factors (trust in health care provider and support). Major outcomes identified to date as being important include decisional conflict and satisfaction with the decision. Decisional conflict considers the state of uncertainty that exists when choices involve some kind of potential threat, loss, remorse, or affront to one’s personal values because of lack of information about alternatives and consequences, lack of personal experience, emotional distress, and pressure from others.
RECOMMENDATIONS FOR FURTHER MODEL DEVELOPMENT
T
he Parental Treatment Decision-Making model provides a holistic perspective on parental treatment decision making. While it is implied that the model applies only to treatment and not to research-related treatment decisions, an argument could be made that it applies to either because parents making decisions for their children with cancer do not distinguish between the two contexts.4,5,7,14 Additional contextual factors
CRITIQUE 2: PARENTAL TREATMENT DECISION MAKING
to consider for inclusion in the model are family beliefs and family functioning as both are foundational to understanding the cancer decision-making experience.15 Family beliefs are ideas that members become convinced are true. As such, beliefs are not good or bad but within certain contexts, like making treatment decisions, they may promote or hinder family adaptation and development. Family beliefs inform the researcher and clinician about the basis of the parents’ decisional preferences. If necessary, health care professionals can use cognitively based interventions to help parents re-frame their beliefs as one strategy to assist parents with treatment decision making.16 For example, two parents may have the same preference (eg, active role), but may have very different beliefs. In one family a parent may believe philosophically in the superiority of a parent’s judgment though not distrusting health care providers; in another family, a parent may choose an active role because they distrust health care providers. Family functioning is composed of family problem solving, communication, roles, and affective responsiveness to the study of parental health care decision making. For instance, families with more positive family functioning may be able to negotiate so that they have congruence between preferred and actual treatment care decisionmaking roles, even in the most difficult health care situations. Anxiety and post-traumatic stress symptoms (PTS) and/or syndrome (PTSD) could replace “distress” in the model. These may be more accurate terms to describe the illness-specific trauma associated with some parents’ experience with treatment decision making. Parents’ anxiety may influence their ability to judge the risk in certain treatment options. Parents could experience incongruence in their preferred decision-making role if they were too anxious to understand the risks of the treatment to their children.17 PTS is important in understanding the psychosocial context of treatment for children with cancer and their families. For instance, parents are exposed and re-exposed to the trauma of feeling helplessness when their children’s lives are threatened by cancer. They then have to make decisions about their children’s care and witness the trauma of their children receiving those invasive and disturbing treatments. Parents may ask themselves in these situations whether or not they made the correct decision about the treatment. In so doing,
103
they could experience symptoms of increased psychological arousal and try to avoid persons, places, or objects linked to the decision and the ongoing trauma. Knowing that a parent suffers from these symptoms (PTS) or the whole syndrome (PTSD) will enable a more accurate interpretation of treatment decision-making roles. For example, passive decision making may be a means to avoid further traumatizing experiences. Inserting parental information needs in the model may help to explain parental preferences for treatment decisions. In Degner’s model,18 the desire for information was seen as distinct from the willingness to use this information in making decisions. It is not yet known if this same distinction exists in parental treatment decision making. Stewart, Pyke-Grimm, and Kelly did discuss a trend toward association between different treatment decision-making preferences and different priorities for types of information. Information about side effects was considered most important to parents desiring an active role in treatment decision making and least important to parents desiring a passive role.
RECOMMENDATIONS RELATED METHODS
P
TO
RESEARCH
reliminary and current studies are examining issues that can make critical contributions to the development of the Parental Treatment Decision-Making model. Stewart, Pyke-Grimm, and Kelly could use some of the interviews now being conducted to further ascertain parental beliefs about their decision-making roles. They may even be able to organize these parental beliefs into typologies of parental treatment decision making. The three investigators may also be able to use these interviews to identify additional key factors that influence parents’ participation in treatment decision-making and the impact on parents of participating in treatment decisions. Interviewing parents about their interpretations of the three treatment decision-making roles (active, collaborative, and passive) as well as their beliefs about treatment decision making19 could also contribute to expanded and validated definitions of roles as well as outcomes of roles. The investigators intend to construct a grounded theory about parental treatment decision making. As an alternative or supplement to that approach, the investigators could construct a
104
JANET A. DEATRICK
typology of decision-making roles that reflects the dimensions important to all decisional roles and how they vary across types of decisions. Both qualitative and quantitative typologies are used widely in the social sciences to depict complex phenomenon such as typologies of family functioning.20 For example, the dimensions may include beliefs (illness view, degree of uncertainty, mindset about participation in decision making), management (parenting philosophy, approach to decision), and consequences/decisional outcomes
(decisional conflict, satisfaction with decision). Sub-dimensions would collectively describe each role qualitatively or quantitatively. For instance, the active role may have a realistic illness view, little uncertainty, confident mindset about participating, a child-centered parenting philosophy, a proactive approach to the decision, little decisional conflict, and high satisfaction with decision making. Such typologies play a descriptive as well as an interpretive role in their representation of complex phenomena.
REFERENCES 1. Anonymous. Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics 1995;95:314-317. 2. Hinds PS, Oakes L, Quargnenti A, et al. Challenges and issues in conducting descriptive decision-making in pediatric oncology: A tale of two studies. J Pediatr Oncol Nurs 1998;15(suppl 1):10-17. 3. Broome ME, Richards DJ, Hall JM. Children in research: The experience of ill children and adolescents. J Fam Nurs 2001;7:32-49. 4. Levi R, Marsick R, Drotar D, et al. Diagnosis, disclosure, and informed consent: Learning from parents of children with cancer. J Pediatr Hematol Oncol 2000;22:3-12. 5. Liaschenko J, Underwood SM. Children in research: Fathers in cancer research-meaning and reasons for participation. J Fam Nurs 2001;7:71-91. 6. Snethen JA, Broome ME. Children in research: The experience of siblings in research is a family affair. J Fam Nurs 2001;7:92-110. 7. Deatrick J, Angst D, Moore C. Parents’ views of their children’s participation in phase 1 oncology clinical trials. J Pediatr Oncol Nurs 2002;19:114-121. 8. Degner LF. Preferences to participate in treatment decision making: The adult model. J Pediatr Oncol Nurs 1998; 15(suppl 1):3-9. 9. Pyke-Grimm KA, Degner L, Small A, et al. Preferences in 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. 10. Thorne SE, Robinson CA. Health care relationships: The chronic illness perspective. Res Nurs Health 1988;11:293-300.
11. Thorne SE, Robinson CA. Guarded alliance: Health care relationships in chronic illness. Image J Nurs Scholarsh 1989;21:153-157. 12. Chu L, Powers PA. Synchrony in adolescence. Adolescence 1995;30:453-461. 13. O’Connor AM. Decisional conflict, in Nursing diagnosis and intervention, McFarlane G.K.M.E.A., editor. St Louis, MO: Mosby; 1997:486-496. 14. Pletsch PM, Stevens PE. Children in research: Informed consent and critical factors affecting mothers. J Fam Nurs 2001;7:50-70. 15. Kazak A, Simms S. Children with Life-Threatening Illness: Psychological Difficulties and Interpersonal relationships. Handbook of Relational Diagnosis and Dysfunctional Family Patterns. Kaslow F.W., editor. New York, NY: Wiley; 1996:225-238. 16. Kazak A, McClure K, Hwang W-T, et al. Cancer-related beliefs: The Family Illness Beliefs Inventory (FIBI). J Pediatr Psychol 2004;29:531-542. 17. Ruccione K, Kramer R, Moore I, et al. Informed consent for treatment of childhood cancer: Factors affecting parents’ decision making. J Pediatr Oncol Nurs 1991;8:112-121. 18. Degner LF, Sloan J, Venkatesh P. The Control Preference Scale. Can J Nurs Res 1997;29:21-43. 19. Drennan J. Cognitive interviewing: Verbal data in the design and pretesting of questionnaires. J Adv Nurs 2003;42:57-63. 20. Deatrick J. Identifying patterns of managing chronic conditions: Family management styles. In: Handbook of Families and Health: Interdisciplinary Perspectives. Crane DR, Marshall E.S., editors. Thousand Oaks, CA: Sage Publishers; in press.
Janet A. Deatrick, PhD, FAAN: Associate Professor, University of Pennsylvania School of Nursing, Philadelphia, PA. Address correspondence to Janet A. Deatrick, PhD, FAAN: University of Pennsylvania School of Nursing, 420 Guardian Dr, Philadelphia, PA 19104-6096. e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.005
101
REFERENCES 1. Stewart JC, Pyke-Grimm RA, Kelly KP. Parental treatment decision making in pediatric oncology. Semin Oncol Nurs 2005;21:89-97. 2. Pyke-Grimm K, Degner L, Small A, et al. 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. 3. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nur Res 1997;29:21-43. 4. Nobile C, Drotar D. Research on the quality of parent provider communication in pediatric care: Implications and recommendations. J Dev Behav Pediatr 2003;24:279-290. 5. Drotar D, Miller V, Willard V, et al. Correlates of parental participation during informed consent for randomized clinical trials in the treatment of childhood leukemia. Ethics Behav 2004;14:1-15. 6. Dermatis H, Lesko LM. Psychological distress in parents consenting to child’s bone marrow transplantation. Bone Marrow Transplant 1990;6:411-417. 7. Levi RB, Marsick MA, Drotar D, et al. Diagnosis disclosure and informed consent: Learning from parents of children with cancer. J Pediatr Hematol Oncol 2000;22:3-12.
8. Hinds PS, Oakes L, Furman W, et al. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Oncol Nurs Forum 1997;24:1523-1528. 9. Feldman HM, Ploof D, Cohen WI. Physician-family partnerships: The adaptive practice model. J Dev Behav Pediatr 1999;20:111-116. 10. Yeh CN, Lin CF, Tsai JL, et al. Determinants of parental decisions on ‘drop out’ from cancer treatment for childhood cancer patients. J Adv Nurs 1999;30:193-199. 11. Deaton AV. Adaptive noncompliance in pediatric asthma: The parent as expert. J Pediatr Psychol 1985;10: 1-14. 12. Koocher GP, McGrath ML, Gudas IJ. Typologies of nonadherence in cystic fibrosis. J Dev Behav Pediatr 1990;11:353-358. 13. Kodish E, Eder M, Ruccione K, et al. Communication of randomization in childhood leukemia trials. JAMA 2004;291:470-475. 14. Thorne SE, Robinson CA. Guarded alliance: Health care relationships in chronic illness. Image: J Nurs Scholarsh 1989;21:153-157.
Dennis Drotar, PhD: Director, Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children’s Hospital, Cleveland, OH. Address correspondence to Dennis Drotar, PhD, Division of Behavioral Pediatrics and Psychology, Rainbow Babies and Children’s Hospital, 11100 Euclid Ave, MS 6038, Cleveland, OH 44106-6038. e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.004
CRITIQUE 2: PARENTAL TREATMENT DECISION MAKING IN PEDIATRIC ONCOLOGY JANET A. DEATRICK
S
TEWART, Pyke-Grimm, and Kelly’s summary of their emerging research program challenges researchers, clinicians, and educators to address our lack of knowledge in pediat-
ric oncology about parental decision making in contrast to the relatively more developed science regarding adult cancer patients (elsewhere in this issue). Their research program could
102
JANET A. DEATRICK
ultimately yield tested interventions designed to optimize parents’ experiences with making treatment decisions for their child diagnosed with cancer. This critique begins with a description of the importance of this line of inquiry to pediatric health care and concludes with recommendations for future development of the theorectic model and for research refinement.
IMPORTANCE
P
TO THE
FIELD
arental decision-making about their children’s treatment is the cornerstone of children’s health care. Parents are expected to be involved in decision making related to their child’s care; health care providers’ expectation of parental involvement is rooted in their conception of what comprises an ethical, family-centered approach to care.1 While a high value is generally placed on mutual decision making by health care professionals, we know from clinical practice that the preferred and actual roles for parents, children/adolescents (as appropriate), and health care professionals vary across situations and over time. Although parental decision making in pediatric oncology has been investigated over the past decade in descriptive and qualitative studies,2-7 Stewart, Pyke-Grimm, and Kelly are among the first pediatric researchers who are committed to a conceptually based program of research related to parents’ preferences for control over decisions when their child is being treated for cancer. The Parental Treatment Decision-Making model is centered on how much control parents want (control preferences) when decisions need to be made about their child’s medical treatment.8 The relative congruence between the preferred and actual treatment decision-making role (passive, collaborative, or active) is the salient feature of the decisionmaking process and influences decisional outcomes.9 The Parental Treatment Decision-Making model draws on four theoretical foundations, the first of which is the work of Degner,8 who developed the concept of control preferences in research with adults who have cancer. Pyke-Grimm, Denger, Small, and Mueller9 adapted it for use in the Parental Treatment Decision-Making model. The second source is the qualitative research of Thorne and Robinson,10,11 who described the process of parents and health care providers estab-
lishing a guarded alliance during the course of a chronic illness. This means that preferences for involvement in decision making may be influenced by the timing and degree of trust between providers and parents. The third source, the Interactive Model of Synchrony, suggests that increased participation in treatment decision making by parents of children with cancer, which is marked by mutual and responsive interactions, leads to better parental adjustment and better psychological outcomes.12 This model implies that the most positive outcomes from decision making result from active parental participation or from congruence between preferred and actual treatment decision-making roles. The fourth source is the work of O’Connor,13 that indicates a state of uncertainty is aroused when choices, in this case about one’s child, involve risk, loss, regret, or challenge to personal values. Thus, decision making is conceptualized as an interpersonal process, marked by uncertainty and changes over time, as well as various preferences and outcomes. Decision-making contextual factors deduced from these four theoretical sources are seen as influencing the preferred treatment decision-making role. Contextual factors include illness factors (prognosis/severity of illness and uncertainty), personal factors (educational level, distress, knowledge/experience), and relationship factors (trust in health care provider and support). Major outcomes identified to date as being important include decisional conflict and satisfaction with the decision. Decisional conflict considers the state of uncertainty that exists when choices involve some kind of potential threat, loss, remorse, or affront to one’s personal values because of lack of information about alternatives and consequences, lack of personal experience, emotional distress, and pressure from others.
RECOMMENDATIONS FOR FURTHER MODEL DEVELOPMENT
T
he Parental Treatment Decision-Making model provides a holistic perspective on parental treatment decision making. While it is implied that the model applies only to treatment and not to research-related treatment decisions, an argument could be made that it applies to either because parents making decisions for their children with cancer do not distinguish between the two contexts.4,5,7,14 Additional contextual factors
CRITIQUE 2: PARENTAL TREATMENT DECISION MAKING
to consider for inclusion in the model are family beliefs and family functioning as both are foundational to understanding the cancer decision-making experience.15 Family beliefs are ideas that members become convinced are true. As such, beliefs are not good or bad but within certain contexts, like making treatment decisions, they may promote or hinder family adaptation and development. Family beliefs inform the researcher and clinician about the basis of the parents’ decisional preferences. If necessary, health care professionals can use cognitively based interventions to help parents re-frame their beliefs as one strategy to assist parents with treatment decision making.16 For example, two parents may have the same preference (eg, active role), but may have very different beliefs. In one family a parent may believe philosophically in the superiority of a parent’s judgment though not distrusting health care providers; in another family, a parent may choose an active role because they distrust health care providers. Family functioning is composed of family problem solving, communication, roles, and affective responsiveness to the study of parental health care decision making. For instance, families with more positive family functioning may be able to negotiate so that they have congruence between preferred and actual treatment care decisionmaking roles, even in the most difficult health care situations. Anxiety and post-traumatic stress symptoms (PTS) and/or syndrome (PTSD) could replace “distress” in the model. These may be more accurate terms to describe the illness-specific trauma associated with some parents’ experience with treatment decision making. Parents’ anxiety may influence their ability to judge the risk in certain treatment options. Parents could experience incongruence in their preferred decision-making role if they were too anxious to understand the risks of the treatment to their children.17 PTS is important in understanding the psychosocial context of treatment for children with cancer and their families. For instance, parents are exposed and re-exposed to the trauma of feeling helplessness when their children’s lives are threatened by cancer. They then have to make decisions about their children’s care and witness the trauma of their children receiving those invasive and disturbing treatments. Parents may ask themselves in these situations whether or not they made the correct decision about the treatment. In so doing,
103
they could experience symptoms of increased psychological arousal and try to avoid persons, places, or objects linked to the decision and the ongoing trauma. Knowing that a parent suffers from these symptoms (PTS) or the whole syndrome (PTSD) will enable a more accurate interpretation of treatment decision-making roles. For example, passive decision making may be a means to avoid further traumatizing experiences. Inserting parental information needs in the model may help to explain parental preferences for treatment decisions. In Degner’s model,18 the desire for information was seen as distinct from the willingness to use this information in making decisions. It is not yet known if this same distinction exists in parental treatment decision making. Stewart, Pyke-Grimm, and Kelly did discuss a trend toward association between different treatment decision-making preferences and different priorities for types of information. Information about side effects was considered most important to parents desiring an active role in treatment decision making and least important to parents desiring a passive role.
RECOMMENDATIONS RELATED METHODS
P
TO
RESEARCH
reliminary and current studies are examining issues that can make critical contributions to the development of the Parental Treatment Decision-Making model. Stewart, Pyke-Grimm, and Kelly could use some of the interviews now being conducted to further ascertain parental beliefs about their decision-making roles. They may even be able to organize these parental beliefs into typologies of parental treatment decision making. The three investigators may also be able to use these interviews to identify additional key factors that influence parents’ participation in treatment decision-making and the impact on parents of participating in treatment decisions. Interviewing parents about their interpretations of the three treatment decision-making roles (active, collaborative, and passive) as well as their beliefs about treatment decision making19 could also contribute to expanded and validated definitions of roles as well as outcomes of roles. The investigators intend to construct a grounded theory about parental treatment decision making. As an alternative or supplement to that approach, the investigators could construct a
104
JANET A. DEATRICK
typology of decision-making roles that reflects the dimensions important to all decisional roles and how they vary across types of decisions. Both qualitative and quantitative typologies are used widely in the social sciences to depict complex phenomenon such as typologies of family functioning.20 For example, the dimensions may include beliefs (illness view, degree of uncertainty, mindset about participation in decision making), management (parenting philosophy, approach to decision), and consequences/decisional outcomes
(decisional conflict, satisfaction with decision). Sub-dimensions would collectively describe each role qualitatively or quantitatively. For instance, the active role may have a realistic illness view, little uncertainty, confident mindset about participating, a child-centered parenting philosophy, a proactive approach to the decision, little decisional conflict, and high satisfaction with decision making. Such typologies play a descriptive as well as an interpretive role in their representation of complex phenomena.
REFERENCES 1. Anonymous. Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics 1995;95:314-317. 2. Hinds PS, Oakes L, Quargnenti A, et al. Challenges and issues in conducting descriptive decision-making in pediatric oncology: A tale of two studies. J Pediatr Oncol Nurs 1998;15(suppl 1):10-17. 3. Broome ME, Richards DJ, Hall JM. Children in research: The experience of ill children and adolescents. J Fam Nurs 2001;7:32-49. 4. Levi R, Marsick R, Drotar D, et al. Diagnosis, disclosure, and informed consent: Learning from parents of children with cancer. J Pediatr Hematol Oncol 2000;22:3-12. 5. Liaschenko J, Underwood SM. Children in research: Fathers in cancer research-meaning and reasons for participation. J Fam Nurs 2001;7:71-91. 6. Snethen JA, Broome ME. Children in research: The experience of siblings in research is a family affair. J Fam Nurs 2001;7:92-110. 7. Deatrick J, Angst D, Moore C. Parents’ views of their children’s participation in phase 1 oncology clinical trials. J Pediatr Oncol Nurs 2002;19:114-121. 8. Degner LF. Preferences to participate in treatment decision making: The adult model. J Pediatr Oncol Nurs 1998; 15(suppl 1):3-9. 9. Pyke-Grimm KA, Degner L, Small A, et al. Preferences in 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. 10. Thorne SE, Robinson CA. Health care relationships: The chronic illness perspective. Res Nurs Health 1988;11:293-300.
11. Thorne SE, Robinson CA. Guarded alliance: Health care relationships in chronic illness. Image J Nurs Scholarsh 1989;21:153-157. 12. Chu L, Powers PA. Synchrony in adolescence. Adolescence 1995;30:453-461. 13. O’Connor AM. Decisional conflict, in Nursing diagnosis and intervention, McFarlane G.K.M.E.A., editor. St Louis, MO: Mosby; 1997:486-496. 14. Pletsch PM, Stevens PE. Children in research: Informed consent and critical factors affecting mothers. J Fam Nurs 2001;7:50-70. 15. Kazak A, Simms S. Children with Life-Threatening Illness: Psychological Difficulties and Interpersonal relationships. Handbook of Relational Diagnosis and Dysfunctional Family Patterns. Kaslow F.W., editor. New York, NY: Wiley; 1996:225-238. 16. Kazak A, McClure K, Hwang W-T, et al. Cancer-related beliefs: The Family Illness Beliefs Inventory (FIBI). J Pediatr Psychol 2004;29:531-542. 17. Ruccione K, Kramer R, Moore I, et al. Informed consent for treatment of childhood cancer: Factors affecting parents’ decision making. J Pediatr Oncol Nurs 1991;8:112-121. 18. Degner LF, Sloan J, Venkatesh P. The Control Preference Scale. Can J Nurs Res 1997;29:21-43. 19. Drennan J. Cognitive interviewing: Verbal data in the design and pretesting of questionnaires. J Adv Nurs 2003;42:57-63. 20. Deatrick J. Identifying patterns of managing chronic conditions: Family management styles. In: Handbook of Families and Health: Interdisciplinary Perspectives. Crane DR, Marshall E.S., editors. Thousand Oaks, CA: Sage Publishers; in press.
Janet A. Deatrick, PhD, FAAN: Associate Professor, University of Pennsylvania School of Nursing, Philadelphia, PA. Address correspondence to Janet A. Deatrick, PhD, FAAN: University of Pennsylvania School of Nursing, 420 Guardian Dr, Philadelphia, PA 19104-6096. e-mail: [email protected] © 2005 Elsevier Inc. All rights reserved. 0749-2081/05/2102-$30.00/0 doi:10.1016/j.soncn.2004.12.005