Journal of Genetic Counseling, Vol. 8, No. 6, 1999
Genetic Counseling—Stress, Coping, and the Empowerment Perspective Allyn McConkie-Rosell1,2 and Jennifer A. Sullivan1
Historically one of the basic foundations of the genetic counseling process has been nondirectiveness; however, its definition and utility continues to be in question. There remains a need to develop genetic counseling interventions in order to qualify, quantify, measure, and enhance the genetic counseling process as well as to delineate the complex interactions of education and counseling that occur. We propose a framework for genetic counseling interventions utilizing an empowerment perspective and Lazarus and Folkman 's adaptation of the theory of stress and coping. This model frames the genetic counseling process as one that promotes the autonomy of the individual by providing the individual with the tools required to make their own decisions and enhances coping and adjustment to the outcome of those decisions through control and mastery. KEY WORDS: nondirectiveness; counseling interventions; empowerment; theory of stress and coping; control.
INTRODUCTION Shiloh (1996) recently defined the objectives of the genetic counseling process as "learning, understanding, choosing, coping." Historically, one of the basic foundations of the genetic counseling process has been the concept of nondirectiveness. However, genetic counseling, as a profession, has been hindered in its development by both the use of nondirectiveness as a counseling intervention and the lack of guiding theoretical perspectives in the development of interventions. Although theory is frequently used to help explain and predict, theory can also be used to identify social problems, guide practice interventions, and direct research 1Duke University Medical Center, Department of Pediatrics, Durham, North Carolina. should be directed to Allyn McConkie-Rosell, Duke University Medical Center, Department of Pediatrics, Division of Medical Genetics, DUMC 3528, Durham, North Carolina 27710. e-mail: [email protected].
2Correspondence
345 1059-7700/99/1200-0345$16.00/1 C 1999 National Society of Genetic Counselors. Inc.
346
McConkie-Resell and Sullivan
(Robbins et al., 1998a). In addition, interventions developed from a theoretical framework lend themselves to outcome-based research. Consequently, there is a need to develop genetic counseling intervention models that are theory based, incorporate the value of nondirectiveness, and encompass the complex educational and counseling components that uniquely comprise genetic counseling. The purpose of this paper is twofold. First, we discuss the ethos of nondirectiveness and how empowerment, a perspective which incorporates nondirectiveness, better offers opportunity for genetic counselors to enact concrete counseling interventions. Second, we discuss Lazarus and Folkman's Theory of Stress and Coping as a theoretical framework for the development of these genetic counseling interventions. Thus, this paper proposes a model for genetic counseling incorporating empowerment and nondirectiveness into a theoretical framework for the development of a genetic counseling intervention. NONDIRECTIVENESS: WHAT IT IS (AND IS NOT) Recently reviewed, often discussed, and usually the source of disagreement, nondirectiveness has been defined as an extension of the principles of autonomy and beneficence. White has recently defined nondirectiveness as respect for autonomy, as it refers to an individual's capacity for self-determination (White, 1997, 1998). White discusses the four areas which need to be fulfilled for autonomous decision making: the individual needs (1) to be informed, (2) to be free from controlling influences, (3) to be capable of effective deliberation and making decisions, and (4) to have access to available alternatives. The objective of the genetic counseling process utilizing autonomy then becomes enhancement of the decision-making process and ensuring that clients have the greatest opportunity to evaluate options to make the best decisions for themselves. However, nondirectiveness' relationship to autonomy and beneficence, as well as its relationship to value neutrality and ethics, remains a source of considerable discussion (Biesecker, 1998; Botkin, 1995; Caplan, 1993; Clarke, 1997; Fine, 1993; Gervais, 1993; Headings, 1997; Kessler, 1992, 1997b; Resta, 1997; Singer, 1996; Suter, 1998; Wachbroit and Wasserman, 1995; Wolff and Jung, 1995; Yarborough et al., 1989). In general, genetic counselors (and those that study the ethics of genetic counseling) conclude that the process of counseling is not value neutral and that the term nondirectiveness does not imply a value-neutral interaction (Brunger and Lippman, 1995; Caplan, 1993; Gervais, 1993; Headings, 1997;Singer, 1996;Sorenson, 1993;Suter, 1998; Wachbroit and Wasserman, 1995; Wilfond and Baker, 1995). As Caplan stated in 1993 (pp. 157-158), [T]he issue of directiveness does not seem to have anything to do with avoiding or eliminating a specific set of norms, values, or principles. Rather, nondirectiveness is used to describe the stance that the counselor should adopt toward the counselee, one of openness and a willingness to listen... [and] those who insist on the desirability of nondirective counseling are doing so on the grounds that have little to do with morality but rather a lot to do with their beliefs concerning what is and is not effective in facilitating communication.
Stress, Coping, and the Empowerment Perspective
347
There is a lack of agreement about the definition of nondirectiveness in genetic counseling and whether this type of communication is the most appropriate type of communication to facilitate genetic counseling (Bernhardt, 1997; Kessler, 1997b;Michie et al., 1997; van Zuuren, 1997; White, 1997; Wolff and Jung, 1995). Little empirical study has been done to determine if a nondirective approach to genetic counseling is effective in achieving the goals of genetic counseling. Recent studies by Mitchie et al. (1997) and van Zuuren et al. (1997) conclude that genetic counselors struggle with the concept of nondirectiveness and that genetic counseling sessions are, in fact, not purely nondirective interactions. In the United States, Bartels et al. (1997) attempted to define nondirectiveness and to determine the level of importance to genetic counselors by surveying 781 genetic counselors. Respondents defined nondirectiveness as (1) being objective, (2) presenting the information in an unbiased way, and (3) allowing client values to determine outcome. In this survey, 96% of respondents felt that nondirectiveness was very important, however, 72% indicated that they were sometimes directive. Furthermore, this study highlighted the relationship of nondirectiveness to the two factors that are part of genetic counseling: (1) the methods and (2) the outcomes. The authors conclude that nondirective and directive interactions each have distinct roles and benefits during the counseling process. Maintaining the presumption of nondirectiveness related to outcomes can continue to sensitize counselors' awareness of when and why they choose to be directive. Strategically directing the process in counseling sessions can enhance patient understanding and allow discussions of values clients bring to their decisions. (Bartels et al., 1997, p. 178)
Thus, within the context of genetic counseling nondirectiveness is not an intervention but, rather, "a way of thinking about the relationship between client and counselor" (Kessler, 1997b). As such, nondirectiveness can serve as a guide for the counseling process, but it does not identify the variables that influence counseling, define the desired outcomes of the counseling process, or demonstrate how the goals of genetic counseling are to be achieved. FRAMING THE VARIABLES THAT INFLUENCE COUNSELING Because nondirectiveness is unable to quantify the variables that factor into an individual's experience of genetic counseling, a framework of the concerns and issues that influence the adjustment of the client and his/her family is needed to guide the development of genetic counseling interventions. Typically, after the diagnosis of a genetic disorder is made individuals and their families are often simultaneously required to integrate a tremendous amount of information into their life and make difficult choices. The process of decision making requires that the individual be able to weigh the risk and benefits, as well as the positive and negative consequences resulting from each option, and seek and apply new information. Thus, any type of decision making requires the individual to "thoroughly canvas[ses] a wide range of alternative courses of action, [and] surveys the full
348
McConkie-Rosell and Sullivan
range of objectives to be fulfilled and the values implicated by the choice" (Schild and Black, 1984, p. 84). However, in circumstances of threat or stress, it can be difficult to meet the demanding tasks required of decision making. INCORPORATING STRESSORS INTO THE FRAMEWORK OF GENETIC COUNSELING Stress occurs when an individual or system does not have the knowledge or experience to adapt and change in response to a life event (Burr and Klien, 1994). The diagnosis of a genetic disorder is often perceived as a threatening stressful life event because individuals do not have prior knowledge or experience related to the diagnosis of a genetic condition and the changes in life plans that can result from this new situation. Furthermore, because most individuals have relatively little, if any, prior experience with genetic conditions the diagnosis of a genetic disorder presents a situation for which very few individuals have developed coping skills or behaviors. Stress, as defined in Lazarus and Folkman's Transactional Theory of Stress and Coping (TTSC), is a process-oriented relationship between the person and the environment (Folkman, 1984; Lazarus and Folkman, 1984). Presented in detail in the 1984 text Stress, Appraisal, and Coping, the TTSC was developed to describe the bidirectional transactional process of the response to a stressful life event. Whereas prior models of stress response were unidirectional and linear in their description, this model uses the term transactional to indicate that the interaction between the individual and the environment creates a unique new meaning. The appraisal of an event is therefore more than the event itself; it rather becomes the interpretation of the meaning of this event within the environment for the individual. Furthermore, according to Folkman, process-oriented relationship has two distinct meanings. The first is "that the person and the environment are in a dynamic relationship that is constantly changing and the second that this relationship is bi-directional with the person and the environment each acting on the other"(Folkman, 1984, p. 840). This process-oriented relationship is the basis of the appraisal process that is the foundation of Lazarus and Folkman's TTSC and this ability to identify systematically the variables that might influence the appraisal of stress, was the reason this theory was selected for use in this paper. In this version of Stress and Coping Theory, a stressful event is an occurrence that is a challenge, a threat, or a loss. The meaning of a stressful event is determined through the process of appraisal (Folkman et al., 1986; Lazarus and Folkman, 1984). Primary appraisal is the initial evaluation of an event as benign, positive, or stressful. If the occurrence holds no value (i.e., no loss), then the appraisal of the event leads to the judgment of the event as benign, neutral, or irrelevant. However, if the occurrence is appraised as a loss, challenge, or threat, the event is judged as stressful and secondary appraisal of the occurrence then occurs.
Stress, Coping, and the Empowerment Perspective
349
Secondary appraisal incorporates an individual's evaluation of available coping resources in order to determine whether or not resources are available to cope with the problem. Integrated into the appraisal process are both exposure variables and personal variables environment (Lazarus and Folkman, 1984), with exposure variables defined as the extent to which a threat to the stressor is experienced and personal variables defined as those factors such as individual's coping behaviors and support systems. INCORPORATING COPING AND CONTROL INTO THE FRAMEWORK OF GENETIC COUNSELING The theory of stress and coping defines coping as the cognitive and behavioral methods used to master, reduce, or tolerate stress (Folkman, 1984; Ostell, 1991). Coping resources include physical resources, social support networks, and psychological resources such as beliefs, cognitive skills, and problem-solving abilities. Lazarus and Folkman's (1984) TTSC centers on problem-focused and emotion-focused coping strategies. The adaptive coping behaviors that have been identified in response to genetic testing include pursuing hope, learning information, constructing meaning, acquiring new knowledge, developing new coping methods, increasing perceived control, and minimization (Kessler, 1984; Shiloh et al., 1997). Control is a coping behavior integral to Lazarus and Folkman's TTSC. Control is the generalized belief an individual has concerning (1) the amount of control regarding the outcome of a stressful situation and (2) the evaluation of the extent to which the outcome is under the control of the individual (Lazarus and Folkman, 1984). Results of a recent studies of genetic counseling and perceived personal control and coping suggest that problem-focused coping is predicted by the client's level of knowledge regarding the genetic condition (Berkenstadt et al.,1999; Shiloh etal., 1997). Emotion-focused coping, however, is influenced by perceived control, defined in Shiloh's study as the subjective sense of knowing and being able to master the situation. These studies highlight specific areas in the genetic counseling process in which enhanced control can be included: obtaining a diagnosis, learning and understanding the recurrence risk, and discussing options. USING LAZARUS AND FOLKMAN'S TTSC TO EXPLORE GENETIC COUNSELING Lazarus and Folkman's TTSC has been adapted previously for use in understanding the response to genetic testing, resulting in research on the amount of distress felt by individuals in relationship to genetic testing, the decision-making process related to reproduction, and the identification of coping behaviors (Baum
350
McConkie-Rosell and Sullivan
Fig. 1. Adaptation of Lazarus and Folkman's Theory of Stress and Coping.
et al., 1997). As indicated in Fig. 1, the TTSC identifies personal and environmental variables that may influence the appraisal of stress. Examples of environmental or exposure variables that might be expected to influence the appraisal process are the severity of the disorder, availability of treatment, number of affected individuals in the family, number and knowledge of carriers in the family, and amount of contact with affected or carrier family members. Personal or social variables that may influence this process are the individual's self-concept, family characteristics, amount of social support, and desire for children or grandchildren. In a counseling situation awareness of the interaction of these environmental and personal variables can help the counselor assess the factors that may influence the stress response of a particular client. A study by Shiloh and Saxe (1989) assessing the understanding of genetic counseling and perception of genetic risk supports the concept of primary and secondary appraisal of threat. This study indicated that subjective interpretations of recurrence risks are better predicators of reproductive intentions than the objective risks and concluded that the information provided as part of the genetic counseling process is transformed and personalized so that an individual develops their own unique perception of genetic risk. Thus, the decisions made secondary to carrier information cannot be understood without incorporation of the subjective meaning of the information to the individual. Additionally, the recent studies by Berkenstadt et al. (1999) and Shiloh et al. (1997) both found that intervention methods that include control, an issue that is often a major consideration in the appraisal of threat, predicted higher satisfaction with counseling and illustrate that alternative measurement of genetic counseling by items like control provide a more complete view of what occurs during a genetic
Stress, Coping, and the Empowerment Perspective
351
counseling session. Furthermore, these studies demonstrate new areas to explore and base intervention strategies upon. As these studies demonstrate, Lazarus and Folkman's TTSC can be used to enhance understanding of the factors involved in the appraisal of the threat process, level of stress, and response to the outcome of a carrier test. The additional incorporation of an intervention component by Shiloh highlights the flexibility of this adaptation of Stress and Coping Theory for use as a framework for the development and testing of genetic counseling interventions. EMPOWERMENT—A NEW PERSPECTIVE FOR GENETIC COUNSELORS An empowerment perspective, coupled with Lazarus and Folkman's TTSC, provides a framework for redefining the objectives of genetic counseling and guides interventions in meeting these goals. Originally described in a sociopolitical context to address societal concerns and injustice, the term empowerment is now understood also to encompass an individual's ability to effect control and positive life changes within a personal context (Gutierrez, 1994; Robbins et al., 1998b). Hence, in Gutierrez's (1994, p. 208) pivotal work exploring empowerment and coping, it is assumed that personal power can be generated as part of the empowerment process initiated from a strengths perspective of "wellness, competence and control." Through its political origin, empowerment evolved as a concept that addresses situational powerlessness by evoking and involving a process of increasing personal, interpersonal, or political power (Gutierrez, 1994). Thus, providing the tools for individuals, families, and communities to take action to improve their situations and/or to increase their feelings of power or control (Gutierrez, 1994). In the community of special needs, families in general and genetic counseling in particular, the power imbalance between medical professionals and families with whom they work has long been recognized (Dunst and Paget, 1991; Kenen and Smith, 1995; Kessler, 1997a). Consequently, by considering genetic counseling from an empowerment perspective, interventions can be designed to address this inherit power struggle (see Table I). Furthermore, by encouraging healthy and action-oriented responses, such interventions can be important in the mediation of stressful life experiences (Zimmerman, 1990). Empowerment is a continual process involving the evolution of an individual and requires interaction between numerous aspects of the individual. It is also the desired goal of interventions designed to provide individuals with the knowledge, skills, and resilient self-beliefs required to cope, adjust, and effect control over their lives. Four specific components of empowerment and their relationship to the genetic counseling process require further discussion: self efficacy, developing skills, involvement with similar others, and development of a critical consciousness (Gutierrez, 1994).
352
McConkie-Rosell and Sullivan
Table I. Representative Genetic Counseling Interventions Based on an Empowerment Perspective Task
Empowerment-oriented interventions guided by the TTSC
Education and understanding regarding the inheritance of a genetic disorder are required in order to begin the decision-making and problem-solving process.
Interventions would initially focus on the development and enhancement of self-efficacy, skills, and knowledge by focusing on the learning and information processing.
As appreciation of the risk to self and family members cannot be gained without understanding of inheritance, it is important to assess the client's current level of understanding in order to develop new knowledge and skills. Community support (involvement with similar others)
Counseling techniques that help to demystify the information may be helpful in aiding in the mastery of the information.
Decision making required regarding carrier testing for self
Decision making regarding informing and possible testing for relatives
Interventions can move beyond referral to local and national support groups to include self-help and involvement with similar others within the family. In addition, the family as a support network should be considered, as family communication and family response to the information then becomes a critical component to the genetic counseling process. Interventions designed to explore prior successful prior decision making and life experiences are consistent with the view that "most clients are experienced decision makers and professionals need to draw on the intelligence, life experiences, and know-how they have used in the past to deal with current issues" (Parsons and Atkinson, 1992). Interventions in this area would require the counselor to develop a partnership with the client and to develop a plan. This approach not only offers control to the client but also helps with the development of new communication skills.
Developing self-efficacy is a key component to empowerment and is defined as the belief that an individual or group has the capability to produce or to regulate an event (Bandura and Wood, 1989; Gutierrez, 1994). As few individuals or families have prior experience in understanding and applying genetic information, the development of self-efficacy occurs through the process of education and the development of new skills and knowledge. Self-efficacy acts in conjunction with the fostering and development of new and existing skills. This facet of empowerment is defined as the acquisition and refining of skills that allow the individual to interact with other individuals from the position of personal power (Gutierrez, 1994). Adaptation to and management of a genetic disorder often require individuals and families to access and interact with
Stress, Coping, and the Empowerment Perspective
353
information and agencies with which they are unfamiliar. Consequently, genetic counselors often assist families to access resources and agencies that can provide them with needed information and services. Another critical component of the empowerment process is the involvement with similar others, defined as contact with others who share a similar status or problem situation with the intent of offering mutual aid or self-help (Gutierrez, 1994). This component of empowerment underscores the importance of social networks and the linking of families with others facing the same or similar problems. Genetic counselors routinely attempt to establish contact with similar others through the referral to genetic support groups. Schild and Black (1984) have discussed the use of genetic support groups to reduce feelings of isolation. Furthermore, involvement with similar others can act as a buffer by increasing awareness of community and individual resources (Heaney and Israel, 1997). Finally, the cognitive component of empowerment is the development of a critical consciousness, an increased awareness of how political structures affect individual and group experience. It is composed of three cognitive components (Gutierrez, 1994). • An identification with similar others • A reduction of self-blame • A sense of personal responsibility for solving future problems These three components of critical consciousness can be defined within the framework of genetic disorders. An identification with similar others would require the counselor to work with the family to gain an appreciation that they are not the only ones facing difficult decisions and adaptation to significant life changes. A reduction in self-blame can be gained through the knowledge and understanding of the inheritance of the disorder. Finally, a sense of personal responsibility for solving future problems can be developed through enhancement of control and mastery of the situation gained through the identification and development of coping skills and knowledge. Genetic counselors can contribute to the development of a critical consciousness by not only offering their own knowledge but also fostering interactions with professionals such as early intervention specialists and politically active support groups. Genetic counseling guided by an empowerment perspective would require that genetic counseling interventions be developed from a strengths perspective, allowing for choice and control wherever possible. Each component of the empowerment process provides an opportunity for enhancing the autonomy and self-directedness of the individual. The outcome objectives, which would be related to this process, would therefore be problem solving and enhancement of coping and adjustment through control and mastery. If the objectives of an empowerment model are met, the resulting decisions would be autonomous and self-directed. This framework would allow genetic counseling to be defined and explored as an active process of
354
McConkie-Rosell and Sullivan
skill and knowledge development, decision making, and enhancement of coping behaviors. Interventions guided by an empowerment perspective would thus focus on transferring control to the counselees and enhancing individuals' resources and ability to express and act upon their goals and desires. FUTURE DIRECTIONS Our paper proposes a combination of an empowerment perspective and the TTSC as a framework for the development of genetic counseling interventions. From this perspective genetic counseling continues to be a process of education, information processing, and decision making; however, the outcome objectives of genetic counseling—problem solving, coping enhancement, and adjustment to a situation through enhanced control and mastery—can also be defined and quantified. In turn, delineation of these outcome objectives provides an environment for the creation and evaluation of new genetic counseling interventions. Clearly, research is needed to explore this proposed model with future investigations evaluating both the utility and the applicability of this model for genetic counseling. As Gutierrez outlines in her work exploring how empowerment enhances coping, some potential areas of investigation include the identification of positive coping and empowerment responses to stressful life events and the exploration of empowerment of the individual (Gutierrez, 1994). Additionally, the evaluation and identification of variables that may have a significant influence on the appraisal process are critically important to the further development of this model. An investigator could also evaluate how each step of the empowerment process can be enacted and influenced as part of the appraisal process. For example, the use of focus groups to assess the "expert" perspective of individuals effected by genetic disorders would allow for the development of knowledge from the client's perspective. This type of research not only would provide a positive outlet for the thoughts and opinions of individuals who have experienced the genetic counseling process, but also would continue to identify additional areas where genetic counselors could effect positive change in their own practice. The outcome of such theory-driven research can then be placed in the proper context in order to determine if new interventions are effective in the enhancement of information processing, adaptation, adjustment, and coping. LIMITATIONS This model was developed from a pediatric genetic counseling perspective in which the majority of patients are counseled in the context of either presymptomatic or diagnostic testing. One assumption of this model is that more than one counseling
Stress, Coping, and the Empowerment Perspective
355
session is likely. As with any theory-driven ideas, other models would clearly be more appropriate for other types of counseling interactions (e.g., crisis theory for prenatal counseling for ultrasound anomalies). This model is but one way to view the genetic counseling process and is not intended to delineate the rationale behind all types of genetic counseling. CONCLUSION As McGee and Arruda (1998) recently stated, 'The key to preserving the role of genetic counseling... is to put our attention to the task of describing and systematizing the roles of counseling that extend beyond providing and discussing information." Consequently, there is a need for the further development of genetic counseling frameworks, strategies, and interventions that are multifaceted and delineate the complex interactions of education and counseling that occur as part of the genetic counseling process. Ideally, genetic counseling interventions would be designed (1) to reduce anxiety, (2) to enhance control and mastery, and (3) to increase understanding, thus providing the individual and family "with greater control over their lives and decisions" (Kessler, 1997b). This model frames the genetic counseling process as one that promotes the autonomy of the individual by providing the individual with the tools required to make their own decisions, as well as enhanced coping and adjustment to the outcome of those decisions through control and mastery. Further development of the counseling process through the phases of model design and development should aid in the development of both a theoretical base and, subsequently, more effective genetic counseling interventions. Interventions developed from this perspective should help the individual and family "understand and personalize[d] the newly learned, often threatening genetic information, clarify their values, make difficult decisions, and develop and strengthen coping resources to adjust to future outcomes" (Shiloh et al., 1997). This type of intervention would result in the decisions made by the client that would be, by definition, autonomous and noncoercive. In addition, feedback from the families themselves and professionals could be elicited to evaluate and develop interventions based on this empowerment "strengths" perspective. Ultimately, the genetic counseling interventions developed from an empowerment perspective would help the individual and family to learn, understand, choose, and cope (Shiloh, 1996). ACKNOWLEDGMENT The authors would like to express their sincere appreciation to Maeda Galinsky, Ph.D., distinguished Kenan Professor, University of North Carolina School of Social Work, for her encouragement in the development of this paper.
356
McConkie-Rosell and Sullivan
REFERENCES Bandura A, Wood R (1989) Effect of perceived controllability and performance standards on selfregulation of complex decision making. J Pers Soc Psychol 56:805-814. Bartels DM, LeRoy BS, McCarthy P, Caplan AL (1997) Nondirectiveness in genetic counseling: a survey of practitioners. Am J Med Genet 72:172-179. Baum A, Friedman AL, Zadowski SG (1997) Stress and genetic testing for disease risk. Health Psychol 16:8-19. Berkenstadt M, Shiloh S, Garkai G, Katznelson MB-M, Goldman B (1999) Perceived personal control (ppc): A new concept in measuring outcome of genetic counseling. Am J Med Genet 82:53-59. Bernhardt B (1997) Empirical evidence that genetic counseling is directive: Where do we go from here? Am J Hum Genet 60:17-20. Biesecker BB (1998) Future directions in genetic counseling: Practical and ethical considerations. Kennedy Inst Ethics J 8:145-160. Botkin JR (1995) Genetic counseling: making room for beneficence. J Clin Ethics 6:182-184. Brunger F, Lippman A (1995) Resistance and adherence to the norms of genetic counseling. J Genet Counsel 4:151-167. Burr W, Klien S (1994) A systems model of family stress. In: Burr W, Klien S (eds) Reexamining Family Stress. Thousand Oaks, CA: Sage, pp 30-50. Caplan AL (1993) Neutrality is not morality: the ethics of genetic counseling. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 149-165. Clarke AJ (1997) The process of genetic counseling: Beyond non-directiveness. In: Harper PS, Clarke AJ (eds) Genetics Society and Clinical Practice. Herndon, VA: BIOS Scientific Publishers, pp 179200. Dunst CJ, Paget KD (1991) Parent-professional partnerships and family empowerment. In: Fine M (ed) Collaboration with Parents of Exceptional Children. Brandon, VT: Clinical Psychology, pp 2544. Fine BA (1993) The evolution of nondirectiveness in genetic counseling and implications of the human genome project. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 101-117. Folkman S (1984) Personal control and stress and coping processes; a theoretical analysis. J Pers Soc Psychol 46:839-852. Folkman S, Lazarus RS, Gruen RJ, DeLongis A (1986) Appraisal, coping, health status, and psychological symptoms. J Pers Soc Psychol 50:571-579. Gervais KG (1993) Objectivity, value neutrality, and nondirectiveness in genetic counseling. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 119-130. Gutierrez LM (1994) Beyond coping: An empowerment perspective on stressful life events. J Social Soc Welfare 21:201-219. Headings VE (1997) Revisiting foundations of autonomy and beneficence in genetic counseling. Genet Counsel 8:291-294. Heaney CA, Israel BA (1997) Social networks and social support. In: Glanz K, Lewis FM, Rimer BK (eds) Health Behavior and Health Education: Theory, Research, and Practice, 2nd ed. San Francisco: Jossey-Bass, pp 179-205. Kenen RH, Smith ACM (1995) Genetic counseling for the next 25 years: Models for the future. J Genet Counsel 4:115-124. Kessler S (1984) Psychologic responses to stresses in genetic disease. Birth Defects Orig Artie Ser 20:114-117. Kessler S (1992) Psychological aspects of genetic counseling. VIII. Suffering and countertransference. J Genet Counsel 1:303-308. Kessler S (1997a) Psychological aspects of genetic counseling. IX. Teaching and counseling. J Genet Counsel 6:287-295. Kessler S (1997b) Psychological aspects of genetic counseling. XI. Nondirectiveness revisited. Am J Med Genet 12:164-171. Lazarus RS, Folkman S (1984) Stress, Appraisal, and Coping. New York: Springer.
Stress, Coping, and the Empowerment Perspective
357
McGee G, Amida M (1998) A crossroads in genetic counseling and ethics. Cambr Q Healthcare Ethics 7:97-100. Michie S, Bron F, Bobrow M, Marteau T (1997) Nondirectiveness in genetic counseling: An empirical study. Am J Hum Genet 60:40-47. Ostell A (1991) Coping, problem solving and stress: A framework for intervention strategies. Br J Med Psychol 64:11-24. Parsons E, Atkinson P (1992) Lay constructions of genetics risk. Social Health Illness 14:437-455. Resta RG (1997) Eugenics and nondirectiveness in genetic counseling. J Genet Counsel 6:255-258. Robbins SP, Chatterjee P, Canda ER (1998a) The nature of theories. In: Contemporary Human Behavior Theory: A Critical Perspective for Social Work. Boston: Allyn and Bacon, pp 1-24. Robbins SP, Chatterjee P, Canda ER, Couchonnal G, Snodgress M, Becker B (1998b) Theories of empowerment. In: Contemporary Human Behavior Theory: A Critical Perspective for Social Work. Boston: Allyn and Bacon, pp 89-117. Schild S, Black RB (1984)Social Work and Genetics: A Guide for Practice. New York: The Haworth Press. Shiloh S (1996) Genetic counseling: A developing area of interest for psychologists. Prof Psychol Res Pr 27:475-486. Shiloh S, Saxe L (1989) Perception of risk in genetic counseling. Psychol Health 3:45-61. Shiloh S, Berkenstadt M, Meiran N, Bat-Miriam-Katznelson M, Goldman B (1997) Mediating effects of perceived personal control in coping with a health threat: The case of genetic counseling. JAppl Soc Psychol 27:1146-1174. Singer GHS (1996) Clarifying the duties and goals of genetic counselors: implications for nondirectiveness. In: Gert B, Berger EM, George F. Cahill J, Clouoser KD, Culver CM, Moeschler JB, Singer GHS (eds) Morality and the New Genetics: A Guide for Students and Health Care Providers. Sudbury, MA: Jones and Bartlett, pp 125-145. Sorenson JR (1993) Genetic counseling: Values that have mattered. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 3-14. Suter SM (1998) Value neutrality and nondirectiveness: Comments on "future directions in genetic counseling." Kennedy Inst Ethics J 8:161-163. van Zuuren FJ (1997) The standard of neutrality during genetic counselling: An empirical investigation. Patient Educ Counsel 32:69-79. Wachbroit R, Wasserman D (1995) Clarifying the goals of nondirective genetic counseling. Philos Public Pol 15:1-6. White MT (1997) "Respect for autonomy" in genetic counseling: An analysis and proposal. J Genet Counsel 6:297-313. White MT (1998) Decision-making through dialogue: Reconfiguring autonomy in genetic counseling. Theor Med Bioeth 19:5-19. Wilfond BS, Baker D (1995) Genetic counseling, non-directiveness, and the clients' values: Is what clients say, what they mean. J Clin Ethics 6:180-182. Wolff G, Jung C (1995) Nondirectiveness and genetic counseling. J Genet Counsel 4:3-25. Yarborough M, Scott JA, Dixon LK (1989) The role of beneficence in clinical genetics: Non-directive counseling reconsidered. Theor Med 10:139-149. Zimmerman MA (1990) Toward a theory of learned hopefulness: A structural model analysis of participation and empowerment. J Res Pers 24:71-86.
Genetic Counseling—Stress, Coping, and the Empowerment Perspective Allyn McConkie-Rosell1,2 and Jennifer A. Sullivan1
Historically one of the basic foundations of the genetic counseling process has been nondirectiveness; however, its definition and utility continues to be in question. There remains a need to develop genetic counseling interventions in order to qualify, quantify, measure, and enhance the genetic counseling process as well as to delineate the complex interactions of education and counseling that occur. We propose a framework for genetic counseling interventions utilizing an empowerment perspective and Lazarus and Folkman 's adaptation of the theory of stress and coping. This model frames the genetic counseling process as one that promotes the autonomy of the individual by providing the individual with the tools required to make their own decisions and enhances coping and adjustment to the outcome of those decisions through control and mastery. KEY WORDS: nondirectiveness; counseling interventions; empowerment; theory of stress and coping; control.
INTRODUCTION Shiloh (1996) recently defined the objectives of the genetic counseling process as "learning, understanding, choosing, coping." Historically, one of the basic foundations of the genetic counseling process has been the concept of nondirectiveness. However, genetic counseling, as a profession, has been hindered in its development by both the use of nondirectiveness as a counseling intervention and the lack of guiding theoretical perspectives in the development of interventions. Although theory is frequently used to help explain and predict, theory can also be used to identify social problems, guide practice interventions, and direct research 1Duke University Medical Center, Department of Pediatrics, Durham, North Carolina. should be directed to Allyn McConkie-Rosell, Duke University Medical Center, Department of Pediatrics, Division of Medical Genetics, DUMC 3528, Durham, North Carolina 27710. e-mail: [email protected].
2Correspondence
345 1059-7700/99/1200-0345$16.00/1 C 1999 National Society of Genetic Counselors. Inc.
346
McConkie-Resell and Sullivan
(Robbins et al., 1998a). In addition, interventions developed from a theoretical framework lend themselves to outcome-based research. Consequently, there is a need to develop genetic counseling intervention models that are theory based, incorporate the value of nondirectiveness, and encompass the complex educational and counseling components that uniquely comprise genetic counseling. The purpose of this paper is twofold. First, we discuss the ethos of nondirectiveness and how empowerment, a perspective which incorporates nondirectiveness, better offers opportunity for genetic counselors to enact concrete counseling interventions. Second, we discuss Lazarus and Folkman's Theory of Stress and Coping as a theoretical framework for the development of these genetic counseling interventions. Thus, this paper proposes a model for genetic counseling incorporating empowerment and nondirectiveness into a theoretical framework for the development of a genetic counseling intervention. NONDIRECTIVENESS: WHAT IT IS (AND IS NOT) Recently reviewed, often discussed, and usually the source of disagreement, nondirectiveness has been defined as an extension of the principles of autonomy and beneficence. White has recently defined nondirectiveness as respect for autonomy, as it refers to an individual's capacity for self-determination (White, 1997, 1998). White discusses the four areas which need to be fulfilled for autonomous decision making: the individual needs (1) to be informed, (2) to be free from controlling influences, (3) to be capable of effective deliberation and making decisions, and (4) to have access to available alternatives. The objective of the genetic counseling process utilizing autonomy then becomes enhancement of the decision-making process and ensuring that clients have the greatest opportunity to evaluate options to make the best decisions for themselves. However, nondirectiveness' relationship to autonomy and beneficence, as well as its relationship to value neutrality and ethics, remains a source of considerable discussion (Biesecker, 1998; Botkin, 1995; Caplan, 1993; Clarke, 1997; Fine, 1993; Gervais, 1993; Headings, 1997; Kessler, 1992, 1997b; Resta, 1997; Singer, 1996; Suter, 1998; Wachbroit and Wasserman, 1995; Wolff and Jung, 1995; Yarborough et al., 1989). In general, genetic counselors (and those that study the ethics of genetic counseling) conclude that the process of counseling is not value neutral and that the term nondirectiveness does not imply a value-neutral interaction (Brunger and Lippman, 1995; Caplan, 1993; Gervais, 1993; Headings, 1997;Singer, 1996;Sorenson, 1993;Suter, 1998; Wachbroit and Wasserman, 1995; Wilfond and Baker, 1995). As Caplan stated in 1993 (pp. 157-158), [T]he issue of directiveness does not seem to have anything to do with avoiding or eliminating a specific set of norms, values, or principles. Rather, nondirectiveness is used to describe the stance that the counselor should adopt toward the counselee, one of openness and a willingness to listen... [and] those who insist on the desirability of nondirective counseling are doing so on the grounds that have little to do with morality but rather a lot to do with their beliefs concerning what is and is not effective in facilitating communication.
Stress, Coping, and the Empowerment Perspective
347
There is a lack of agreement about the definition of nondirectiveness in genetic counseling and whether this type of communication is the most appropriate type of communication to facilitate genetic counseling (Bernhardt, 1997; Kessler, 1997b;Michie et al., 1997; van Zuuren, 1997; White, 1997; Wolff and Jung, 1995). Little empirical study has been done to determine if a nondirective approach to genetic counseling is effective in achieving the goals of genetic counseling. Recent studies by Mitchie et al. (1997) and van Zuuren et al. (1997) conclude that genetic counselors struggle with the concept of nondirectiveness and that genetic counseling sessions are, in fact, not purely nondirective interactions. In the United States, Bartels et al. (1997) attempted to define nondirectiveness and to determine the level of importance to genetic counselors by surveying 781 genetic counselors. Respondents defined nondirectiveness as (1) being objective, (2) presenting the information in an unbiased way, and (3) allowing client values to determine outcome. In this survey, 96% of respondents felt that nondirectiveness was very important, however, 72% indicated that they were sometimes directive. Furthermore, this study highlighted the relationship of nondirectiveness to the two factors that are part of genetic counseling: (1) the methods and (2) the outcomes. The authors conclude that nondirective and directive interactions each have distinct roles and benefits during the counseling process. Maintaining the presumption of nondirectiveness related to outcomes can continue to sensitize counselors' awareness of when and why they choose to be directive. Strategically directing the process in counseling sessions can enhance patient understanding and allow discussions of values clients bring to their decisions. (Bartels et al., 1997, p. 178)
Thus, within the context of genetic counseling nondirectiveness is not an intervention but, rather, "a way of thinking about the relationship between client and counselor" (Kessler, 1997b). As such, nondirectiveness can serve as a guide for the counseling process, but it does not identify the variables that influence counseling, define the desired outcomes of the counseling process, or demonstrate how the goals of genetic counseling are to be achieved. FRAMING THE VARIABLES THAT INFLUENCE COUNSELING Because nondirectiveness is unable to quantify the variables that factor into an individual's experience of genetic counseling, a framework of the concerns and issues that influence the adjustment of the client and his/her family is needed to guide the development of genetic counseling interventions. Typically, after the diagnosis of a genetic disorder is made individuals and their families are often simultaneously required to integrate a tremendous amount of information into their life and make difficult choices. The process of decision making requires that the individual be able to weigh the risk and benefits, as well as the positive and negative consequences resulting from each option, and seek and apply new information. Thus, any type of decision making requires the individual to "thoroughly canvas[ses] a wide range of alternative courses of action, [and] surveys the full
348
McConkie-Rosell and Sullivan
range of objectives to be fulfilled and the values implicated by the choice" (Schild and Black, 1984, p. 84). However, in circumstances of threat or stress, it can be difficult to meet the demanding tasks required of decision making. INCORPORATING STRESSORS INTO THE FRAMEWORK OF GENETIC COUNSELING Stress occurs when an individual or system does not have the knowledge or experience to adapt and change in response to a life event (Burr and Klien, 1994). The diagnosis of a genetic disorder is often perceived as a threatening stressful life event because individuals do not have prior knowledge or experience related to the diagnosis of a genetic condition and the changes in life plans that can result from this new situation. Furthermore, because most individuals have relatively little, if any, prior experience with genetic conditions the diagnosis of a genetic disorder presents a situation for which very few individuals have developed coping skills or behaviors. Stress, as defined in Lazarus and Folkman's Transactional Theory of Stress and Coping (TTSC), is a process-oriented relationship between the person and the environment (Folkman, 1984; Lazarus and Folkman, 1984). Presented in detail in the 1984 text Stress, Appraisal, and Coping, the TTSC was developed to describe the bidirectional transactional process of the response to a stressful life event. Whereas prior models of stress response were unidirectional and linear in their description, this model uses the term transactional to indicate that the interaction between the individual and the environment creates a unique new meaning. The appraisal of an event is therefore more than the event itself; it rather becomes the interpretation of the meaning of this event within the environment for the individual. Furthermore, according to Folkman, process-oriented relationship has two distinct meanings. The first is "that the person and the environment are in a dynamic relationship that is constantly changing and the second that this relationship is bi-directional with the person and the environment each acting on the other"(Folkman, 1984, p. 840). This process-oriented relationship is the basis of the appraisal process that is the foundation of Lazarus and Folkman's TTSC and this ability to identify systematically the variables that might influence the appraisal of stress, was the reason this theory was selected for use in this paper. In this version of Stress and Coping Theory, a stressful event is an occurrence that is a challenge, a threat, or a loss. The meaning of a stressful event is determined through the process of appraisal (Folkman et al., 1986; Lazarus and Folkman, 1984). Primary appraisal is the initial evaluation of an event as benign, positive, or stressful. If the occurrence holds no value (i.e., no loss), then the appraisal of the event leads to the judgment of the event as benign, neutral, or irrelevant. However, if the occurrence is appraised as a loss, challenge, or threat, the event is judged as stressful and secondary appraisal of the occurrence then occurs.
Stress, Coping, and the Empowerment Perspective
349
Secondary appraisal incorporates an individual's evaluation of available coping resources in order to determine whether or not resources are available to cope with the problem. Integrated into the appraisal process are both exposure variables and personal variables environment (Lazarus and Folkman, 1984), with exposure variables defined as the extent to which a threat to the stressor is experienced and personal variables defined as those factors such as individual's coping behaviors and support systems. INCORPORATING COPING AND CONTROL INTO THE FRAMEWORK OF GENETIC COUNSELING The theory of stress and coping defines coping as the cognitive and behavioral methods used to master, reduce, or tolerate stress (Folkman, 1984; Ostell, 1991). Coping resources include physical resources, social support networks, and psychological resources such as beliefs, cognitive skills, and problem-solving abilities. Lazarus and Folkman's (1984) TTSC centers on problem-focused and emotion-focused coping strategies. The adaptive coping behaviors that have been identified in response to genetic testing include pursuing hope, learning information, constructing meaning, acquiring new knowledge, developing new coping methods, increasing perceived control, and minimization (Kessler, 1984; Shiloh et al., 1997). Control is a coping behavior integral to Lazarus and Folkman's TTSC. Control is the generalized belief an individual has concerning (1) the amount of control regarding the outcome of a stressful situation and (2) the evaluation of the extent to which the outcome is under the control of the individual (Lazarus and Folkman, 1984). Results of a recent studies of genetic counseling and perceived personal control and coping suggest that problem-focused coping is predicted by the client's level of knowledge regarding the genetic condition (Berkenstadt et al.,1999; Shiloh etal., 1997). Emotion-focused coping, however, is influenced by perceived control, defined in Shiloh's study as the subjective sense of knowing and being able to master the situation. These studies highlight specific areas in the genetic counseling process in which enhanced control can be included: obtaining a diagnosis, learning and understanding the recurrence risk, and discussing options. USING LAZARUS AND FOLKMAN'S TTSC TO EXPLORE GENETIC COUNSELING Lazarus and Folkman's TTSC has been adapted previously for use in understanding the response to genetic testing, resulting in research on the amount of distress felt by individuals in relationship to genetic testing, the decision-making process related to reproduction, and the identification of coping behaviors (Baum
350
McConkie-Rosell and Sullivan
Fig. 1. Adaptation of Lazarus and Folkman's Theory of Stress and Coping.
et al., 1997). As indicated in Fig. 1, the TTSC identifies personal and environmental variables that may influence the appraisal of stress. Examples of environmental or exposure variables that might be expected to influence the appraisal process are the severity of the disorder, availability of treatment, number of affected individuals in the family, number and knowledge of carriers in the family, and amount of contact with affected or carrier family members. Personal or social variables that may influence this process are the individual's self-concept, family characteristics, amount of social support, and desire for children or grandchildren. In a counseling situation awareness of the interaction of these environmental and personal variables can help the counselor assess the factors that may influence the stress response of a particular client. A study by Shiloh and Saxe (1989) assessing the understanding of genetic counseling and perception of genetic risk supports the concept of primary and secondary appraisal of threat. This study indicated that subjective interpretations of recurrence risks are better predicators of reproductive intentions than the objective risks and concluded that the information provided as part of the genetic counseling process is transformed and personalized so that an individual develops their own unique perception of genetic risk. Thus, the decisions made secondary to carrier information cannot be understood without incorporation of the subjective meaning of the information to the individual. Additionally, the recent studies by Berkenstadt et al. (1999) and Shiloh et al. (1997) both found that intervention methods that include control, an issue that is often a major consideration in the appraisal of threat, predicted higher satisfaction with counseling and illustrate that alternative measurement of genetic counseling by items like control provide a more complete view of what occurs during a genetic
Stress, Coping, and the Empowerment Perspective
351
counseling session. Furthermore, these studies demonstrate new areas to explore and base intervention strategies upon. As these studies demonstrate, Lazarus and Folkman's TTSC can be used to enhance understanding of the factors involved in the appraisal of the threat process, level of stress, and response to the outcome of a carrier test. The additional incorporation of an intervention component by Shiloh highlights the flexibility of this adaptation of Stress and Coping Theory for use as a framework for the development and testing of genetic counseling interventions. EMPOWERMENT—A NEW PERSPECTIVE FOR GENETIC COUNSELORS An empowerment perspective, coupled with Lazarus and Folkman's TTSC, provides a framework for redefining the objectives of genetic counseling and guides interventions in meeting these goals. Originally described in a sociopolitical context to address societal concerns and injustice, the term empowerment is now understood also to encompass an individual's ability to effect control and positive life changes within a personal context (Gutierrez, 1994; Robbins et al., 1998b). Hence, in Gutierrez's (1994, p. 208) pivotal work exploring empowerment and coping, it is assumed that personal power can be generated as part of the empowerment process initiated from a strengths perspective of "wellness, competence and control." Through its political origin, empowerment evolved as a concept that addresses situational powerlessness by evoking and involving a process of increasing personal, interpersonal, or political power (Gutierrez, 1994). Thus, providing the tools for individuals, families, and communities to take action to improve their situations and/or to increase their feelings of power or control (Gutierrez, 1994). In the community of special needs, families in general and genetic counseling in particular, the power imbalance between medical professionals and families with whom they work has long been recognized (Dunst and Paget, 1991; Kenen and Smith, 1995; Kessler, 1997a). Consequently, by considering genetic counseling from an empowerment perspective, interventions can be designed to address this inherit power struggle (see Table I). Furthermore, by encouraging healthy and action-oriented responses, such interventions can be important in the mediation of stressful life experiences (Zimmerman, 1990). Empowerment is a continual process involving the evolution of an individual and requires interaction between numerous aspects of the individual. It is also the desired goal of interventions designed to provide individuals with the knowledge, skills, and resilient self-beliefs required to cope, adjust, and effect control over their lives. Four specific components of empowerment and their relationship to the genetic counseling process require further discussion: self efficacy, developing skills, involvement with similar others, and development of a critical consciousness (Gutierrez, 1994).
352
McConkie-Rosell and Sullivan
Table I. Representative Genetic Counseling Interventions Based on an Empowerment Perspective Task
Empowerment-oriented interventions guided by the TTSC
Education and understanding regarding the inheritance of a genetic disorder are required in order to begin the decision-making and problem-solving process.
Interventions would initially focus on the development and enhancement of self-efficacy, skills, and knowledge by focusing on the learning and information processing.
As appreciation of the risk to self and family members cannot be gained without understanding of inheritance, it is important to assess the client's current level of understanding in order to develop new knowledge and skills. Community support (involvement with similar others)
Counseling techniques that help to demystify the information may be helpful in aiding in the mastery of the information.
Decision making required regarding carrier testing for self
Decision making regarding informing and possible testing for relatives
Interventions can move beyond referral to local and national support groups to include self-help and involvement with similar others within the family. In addition, the family as a support network should be considered, as family communication and family response to the information then becomes a critical component to the genetic counseling process. Interventions designed to explore prior successful prior decision making and life experiences are consistent with the view that "most clients are experienced decision makers and professionals need to draw on the intelligence, life experiences, and know-how they have used in the past to deal with current issues" (Parsons and Atkinson, 1992). Interventions in this area would require the counselor to develop a partnership with the client and to develop a plan. This approach not only offers control to the client but also helps with the development of new communication skills.
Developing self-efficacy is a key component to empowerment and is defined as the belief that an individual or group has the capability to produce or to regulate an event (Bandura and Wood, 1989; Gutierrez, 1994). As few individuals or families have prior experience in understanding and applying genetic information, the development of self-efficacy occurs through the process of education and the development of new skills and knowledge. Self-efficacy acts in conjunction with the fostering and development of new and existing skills. This facet of empowerment is defined as the acquisition and refining of skills that allow the individual to interact with other individuals from the position of personal power (Gutierrez, 1994). Adaptation to and management of a genetic disorder often require individuals and families to access and interact with
Stress, Coping, and the Empowerment Perspective
353
information and agencies with which they are unfamiliar. Consequently, genetic counselors often assist families to access resources and agencies that can provide them with needed information and services. Another critical component of the empowerment process is the involvement with similar others, defined as contact with others who share a similar status or problem situation with the intent of offering mutual aid or self-help (Gutierrez, 1994). This component of empowerment underscores the importance of social networks and the linking of families with others facing the same or similar problems. Genetic counselors routinely attempt to establish contact with similar others through the referral to genetic support groups. Schild and Black (1984) have discussed the use of genetic support groups to reduce feelings of isolation. Furthermore, involvement with similar others can act as a buffer by increasing awareness of community and individual resources (Heaney and Israel, 1997). Finally, the cognitive component of empowerment is the development of a critical consciousness, an increased awareness of how political structures affect individual and group experience. It is composed of three cognitive components (Gutierrez, 1994). • An identification with similar others • A reduction of self-blame • A sense of personal responsibility for solving future problems These three components of critical consciousness can be defined within the framework of genetic disorders. An identification with similar others would require the counselor to work with the family to gain an appreciation that they are not the only ones facing difficult decisions and adaptation to significant life changes. A reduction in self-blame can be gained through the knowledge and understanding of the inheritance of the disorder. Finally, a sense of personal responsibility for solving future problems can be developed through enhancement of control and mastery of the situation gained through the identification and development of coping skills and knowledge. Genetic counselors can contribute to the development of a critical consciousness by not only offering their own knowledge but also fostering interactions with professionals such as early intervention specialists and politically active support groups. Genetic counseling guided by an empowerment perspective would require that genetic counseling interventions be developed from a strengths perspective, allowing for choice and control wherever possible. Each component of the empowerment process provides an opportunity for enhancing the autonomy and self-directedness of the individual. The outcome objectives, which would be related to this process, would therefore be problem solving and enhancement of coping and adjustment through control and mastery. If the objectives of an empowerment model are met, the resulting decisions would be autonomous and self-directed. This framework would allow genetic counseling to be defined and explored as an active process of
354
McConkie-Rosell and Sullivan
skill and knowledge development, decision making, and enhancement of coping behaviors. Interventions guided by an empowerment perspective would thus focus on transferring control to the counselees and enhancing individuals' resources and ability to express and act upon their goals and desires. FUTURE DIRECTIONS Our paper proposes a combination of an empowerment perspective and the TTSC as a framework for the development of genetic counseling interventions. From this perspective genetic counseling continues to be a process of education, information processing, and decision making; however, the outcome objectives of genetic counseling—problem solving, coping enhancement, and adjustment to a situation through enhanced control and mastery—can also be defined and quantified. In turn, delineation of these outcome objectives provides an environment for the creation and evaluation of new genetic counseling interventions. Clearly, research is needed to explore this proposed model with future investigations evaluating both the utility and the applicability of this model for genetic counseling. As Gutierrez outlines in her work exploring how empowerment enhances coping, some potential areas of investigation include the identification of positive coping and empowerment responses to stressful life events and the exploration of empowerment of the individual (Gutierrez, 1994). Additionally, the evaluation and identification of variables that may have a significant influence on the appraisal process are critically important to the further development of this model. An investigator could also evaluate how each step of the empowerment process can be enacted and influenced as part of the appraisal process. For example, the use of focus groups to assess the "expert" perspective of individuals effected by genetic disorders would allow for the development of knowledge from the client's perspective. This type of research not only would provide a positive outlet for the thoughts and opinions of individuals who have experienced the genetic counseling process, but also would continue to identify additional areas where genetic counselors could effect positive change in their own practice. The outcome of such theory-driven research can then be placed in the proper context in order to determine if new interventions are effective in the enhancement of information processing, adaptation, adjustment, and coping. LIMITATIONS This model was developed from a pediatric genetic counseling perspective in which the majority of patients are counseled in the context of either presymptomatic or diagnostic testing. One assumption of this model is that more than one counseling
Stress, Coping, and the Empowerment Perspective
355
session is likely. As with any theory-driven ideas, other models would clearly be more appropriate for other types of counseling interactions (e.g., crisis theory for prenatal counseling for ultrasound anomalies). This model is but one way to view the genetic counseling process and is not intended to delineate the rationale behind all types of genetic counseling. CONCLUSION As McGee and Arruda (1998) recently stated, 'The key to preserving the role of genetic counseling... is to put our attention to the task of describing and systematizing the roles of counseling that extend beyond providing and discussing information." Consequently, there is a need for the further development of genetic counseling frameworks, strategies, and interventions that are multifaceted and delineate the complex interactions of education and counseling that occur as part of the genetic counseling process. Ideally, genetic counseling interventions would be designed (1) to reduce anxiety, (2) to enhance control and mastery, and (3) to increase understanding, thus providing the individual and family "with greater control over their lives and decisions" (Kessler, 1997b). This model frames the genetic counseling process as one that promotes the autonomy of the individual by providing the individual with the tools required to make their own decisions, as well as enhanced coping and adjustment to the outcome of those decisions through control and mastery. Further development of the counseling process through the phases of model design and development should aid in the development of both a theoretical base and, subsequently, more effective genetic counseling interventions. Interventions developed from this perspective should help the individual and family "understand and personalize[d] the newly learned, often threatening genetic information, clarify their values, make difficult decisions, and develop and strengthen coping resources to adjust to future outcomes" (Shiloh et al., 1997). This type of intervention would result in the decisions made by the client that would be, by definition, autonomous and noncoercive. In addition, feedback from the families themselves and professionals could be elicited to evaluate and develop interventions based on this empowerment "strengths" perspective. Ultimately, the genetic counseling interventions developed from an empowerment perspective would help the individual and family to learn, understand, choose, and cope (Shiloh, 1996). ACKNOWLEDGMENT The authors would like to express their sincere appreciation to Maeda Galinsky, Ph.D., distinguished Kenan Professor, University of North Carolina School of Social Work, for her encouragement in the development of this paper.
356
McConkie-Rosell and Sullivan
REFERENCES Bandura A, Wood R (1989) Effect of perceived controllability and performance standards on selfregulation of complex decision making. J Pers Soc Psychol 56:805-814. Bartels DM, LeRoy BS, McCarthy P, Caplan AL (1997) Nondirectiveness in genetic counseling: a survey of practitioners. Am J Med Genet 72:172-179. Baum A, Friedman AL, Zadowski SG (1997) Stress and genetic testing for disease risk. Health Psychol 16:8-19. Berkenstadt M, Shiloh S, Garkai G, Katznelson MB-M, Goldman B (1999) Perceived personal control (ppc): A new concept in measuring outcome of genetic counseling. Am J Med Genet 82:53-59. Bernhardt B (1997) Empirical evidence that genetic counseling is directive: Where do we go from here? Am J Hum Genet 60:17-20. Biesecker BB (1998) Future directions in genetic counseling: Practical and ethical considerations. Kennedy Inst Ethics J 8:145-160. Botkin JR (1995) Genetic counseling: making room for beneficence. J Clin Ethics 6:182-184. Brunger F, Lippman A (1995) Resistance and adherence to the norms of genetic counseling. J Genet Counsel 4:151-167. Burr W, Klien S (1994) A systems model of family stress. In: Burr W, Klien S (eds) Reexamining Family Stress. Thousand Oaks, CA: Sage, pp 30-50. Caplan AL (1993) Neutrality is not morality: the ethics of genetic counseling. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 149-165. Clarke AJ (1997) The process of genetic counseling: Beyond non-directiveness. In: Harper PS, Clarke AJ (eds) Genetics Society and Clinical Practice. Herndon, VA: BIOS Scientific Publishers, pp 179200. Dunst CJ, Paget KD (1991) Parent-professional partnerships and family empowerment. In: Fine M (ed) Collaboration with Parents of Exceptional Children. Brandon, VT: Clinical Psychology, pp 2544. Fine BA (1993) The evolution of nondirectiveness in genetic counseling and implications of the human genome project. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 101-117. Folkman S (1984) Personal control and stress and coping processes; a theoretical analysis. J Pers Soc Psychol 46:839-852. Folkman S, Lazarus RS, Gruen RJ, DeLongis A (1986) Appraisal, coping, health status, and psychological symptoms. J Pers Soc Psychol 50:571-579. Gervais KG (1993) Objectivity, value neutrality, and nondirectiveness in genetic counseling. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 119-130. Gutierrez LM (1994) Beyond coping: An empowerment perspective on stressful life events. J Social Soc Welfare 21:201-219. Headings VE (1997) Revisiting foundations of autonomy and beneficence in genetic counseling. Genet Counsel 8:291-294. Heaney CA, Israel BA (1997) Social networks and social support. In: Glanz K, Lewis FM, Rimer BK (eds) Health Behavior and Health Education: Theory, Research, and Practice, 2nd ed. San Francisco: Jossey-Bass, pp 179-205. Kenen RH, Smith ACM (1995) Genetic counseling for the next 25 years: Models for the future. J Genet Counsel 4:115-124. Kessler S (1984) Psychologic responses to stresses in genetic disease. Birth Defects Orig Artie Ser 20:114-117. Kessler S (1992) Psychological aspects of genetic counseling. VIII. Suffering and countertransference. J Genet Counsel 1:303-308. Kessler S (1997a) Psychological aspects of genetic counseling. IX. Teaching and counseling. J Genet Counsel 6:287-295. Kessler S (1997b) Psychological aspects of genetic counseling. XI. Nondirectiveness revisited. Am J Med Genet 12:164-171. Lazarus RS, Folkman S (1984) Stress, Appraisal, and Coping. New York: Springer.
Stress, Coping, and the Empowerment Perspective
357
McGee G, Amida M (1998) A crossroads in genetic counseling and ethics. Cambr Q Healthcare Ethics 7:97-100. Michie S, Bron F, Bobrow M, Marteau T (1997) Nondirectiveness in genetic counseling: An empirical study. Am J Hum Genet 60:40-47. Ostell A (1991) Coping, problem solving and stress: A framework for intervention strategies. Br J Med Psychol 64:11-24. Parsons E, Atkinson P (1992) Lay constructions of genetics risk. Social Health Illness 14:437-455. Resta RG (1997) Eugenics and nondirectiveness in genetic counseling. J Genet Counsel 6:255-258. Robbins SP, Chatterjee P, Canda ER (1998a) The nature of theories. In: Contemporary Human Behavior Theory: A Critical Perspective for Social Work. Boston: Allyn and Bacon, pp 1-24. Robbins SP, Chatterjee P, Canda ER, Couchonnal G, Snodgress M, Becker B (1998b) Theories of empowerment. In: Contemporary Human Behavior Theory: A Critical Perspective for Social Work. Boston: Allyn and Bacon, pp 89-117. Schild S, Black RB (1984)Social Work and Genetics: A Guide for Practice. New York: The Haworth Press. Shiloh S (1996) Genetic counseling: A developing area of interest for psychologists. Prof Psychol Res Pr 27:475-486. Shiloh S, Saxe L (1989) Perception of risk in genetic counseling. Psychol Health 3:45-61. Shiloh S, Berkenstadt M, Meiran N, Bat-Miriam-Katznelson M, Goldman B (1997) Mediating effects of perceived personal control in coping with a health threat: The case of genetic counseling. JAppl Soc Psychol 27:1146-1174. Singer GHS (1996) Clarifying the duties and goals of genetic counselors: implications for nondirectiveness. In: Gert B, Berger EM, George F. Cahill J, Clouoser KD, Culver CM, Moeschler JB, Singer GHS (eds) Morality and the New Genetics: A Guide for Students and Health Care Providers. Sudbury, MA: Jones and Bartlett, pp 125-145. Sorenson JR (1993) Genetic counseling: Values that have mattered. In: Bartels D, LeRoy B, Caplan A (eds) Prescribing our Future: Ethical Challenges in Genetic Counseling. New York: Aldine DeGruyter, pp 3-14. Suter SM (1998) Value neutrality and nondirectiveness: Comments on "future directions in genetic counseling." Kennedy Inst Ethics J 8:161-163. van Zuuren FJ (1997) The standard of neutrality during genetic counselling: An empirical investigation. Patient Educ Counsel 32:69-79. Wachbroit R, Wasserman D (1995) Clarifying the goals of nondirective genetic counseling. Philos Public Pol 15:1-6. White MT (1997) "Respect for autonomy" in genetic counseling: An analysis and proposal. J Genet Counsel 6:297-313. White MT (1998) Decision-making through dialogue: Reconfiguring autonomy in genetic counseling. Theor Med Bioeth 19:5-19. Wilfond BS, Baker D (1995) Genetic counseling, non-directiveness, and the clients' values: Is what clients say, what they mean. J Clin Ethics 6:180-182. Wolff G, Jung C (1995) Nondirectiveness and genetic counseling. J Genet Counsel 4:3-25. Yarborough M, Scott JA, Dixon LK (1989) The role of beneficence in clinical genetics: Non-directive counseling reconsidered. Theor Med 10:139-149. Zimmerman MA (1990) Toward a theory of learned hopefulness: A structural model analysis of participation and empowerment. J Res Pers 24:71-86.
