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Handling confidentiality and disclosure in the evaluation of client outcomes in managed mental health services for children and adolescents
Ewluation
and Program Planning, Vol. 19, No. 2. pp. 175-182, 1996 Cmvright IT+1996 Elsevier Science Ltd Printed’k d&‘Britain. All rights reserved 0149.7189/96 $15.00+0.00
Pergamon
HANDLING CONFIDENTIALITY AND DISCLOSURE IN THE EVALUATION OF CLIENT OUTCOMES IN MANAGED MENTAL HEALTH SERVICES FOR CHILDREN AND ADOLESCENTS
CRAIG ANNE HEFLINGER, Vanderbilt
CAROL T. NIXON Center for Mental
Health
and KARL HAMNER
Policy
ABSTRACT In the process of examining client outcomes of mental health services, evaluators often find themselves immersed in ethical and legal dilemmas surrounding participant privacy and the confidentiality of information gained in the process of the evaluation. Evaluators must be prepared to make decisions about disclosure of confidential information that indicates risk of abuse or serious harm to the client or by the client toward another. This article details the experience of the investigators of the Fort Bragg Evaluation Project in the development and application of standardized decision algorithms for considering disclosure of confidential information obtained during the evaluation. The consequences of using such decision paradigms, including the number of disclosures made and the subsequent effects on family participation in the study, are also described. Copyright 0 1996 Elsevier Science Ltd
by many stakeholders, from provider groups and advocates to administrators and researchers. The methods for evaluating mental health services are varied and extensive, and recommendations and “how to’s” for taking on these tasks are described in detail elsewhere (e.g. Bickman & Rog, 1992; Burns & Friedman, 1990). What has not been discussed in detail, however, are the ethical and legal dilemmas surrounding confidentiality and disclosure in which evaluators find themselves when client outcomes are examined. Children and adolescents with emotional, behavioral, and neurobiological problems and their families are the target population in mental health services evaluation. By virtue of the reasons for which these children access the service system, the evaluator is faced with sensitive information that requires privacy and deliberate hand-
INTRODUCTION The evaluation of client outcomes is a critical piece of the puzzle in examining the effects of managed mental health. In the area of children’s mental health, as in mental health services in general, the many variations of managed care are changing the service delivery picture. From health management organizations and preferred provider networks to precertification requirements and establishing intermediate services in order to reduce the need for restrictive and expensive hospitalization, the implementation of managed care has meant changes, sometimes drastic, in the way that mental health service delivery is experienced at the “street level” (Lipsky, 1980) where children and their families seek services. The evaluation of these changes has been called for
The authors would like to acknowledge the contributions of Dr Barry Nurcombe and Dr Kay Hodges in the development of the disclosure algorithm and in providing feedback on this manuscript. In addition, the many children and parents who provided data to the Fort Bragg Evaluation Project and the staff members who contributed to the effort are much appreciated. This work was supported by the U.S. Army Health Services Command (DA-DAlO-89-C-0013) as a subcontract from the North Carolina Department of Human Resources/Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, and by grants to Dr Leonard Bickman (ROIMH-46136 and A5T32MH-19544) from the National Institute of Mental Health. Requests for reprints and more information should be addressed to Dr Heflinger at the Center for Mental Health Policy. 1207 18th Avenue South, Nashville, TN 37212, U.S.A. 175
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ling. The “data” collected about client outcomes considered relevant to understanding the effects of mental health services could include information about serious behavioral problems, substance abuse, family relationship issues, suicidal thoughts and acts, and sexual, physical, or emotional abuse. Furthermore, the use of multiple informants to gather information about each client, recommended in order to obtain a more complete picture and ecologically valid assessment of child and family functioning (Andrews, Garrison, Jackson, Addy, & McKeown, 1993; Epanchin & Rennells, 1989; Renouf & Kovacs, 1994; Stranger & Lewis, 1993) increases the odds of gleaning reports of child or adolescent high-risk behavior or abuse or neglect from caregivers or others. Evaluators are subsequently forced into a dilemma as they weigh the competing ethical principles of confidentiality, protection of participants from harm, and the legal mandates to report child maltreatment. Ethically responsible evaluation should anticipate such circumstances prior to the start of data collection and develop a protocol that addresses these issues (Sieber, 1992). Although much has been written about safeguarding information obtained during research (e.g. Koocher & Keith-Spiegel, 1990) very little has been written about the disclosure of information gained in the conduct of evaluation and the subsequent consequences. Much of what does appear in the literature involves high-risk behavior in AIDS research (e.g. Melton, 1989; Melton & Gray, 1988; Rotheram-Borus & Koopman, 1992). Mental health services evaluation, however, is seldom addressed. Existing published ethical principles (e.g. American Psychological Association, 1992; Joint Commission on Standards for Educational Evaluation, 1994) are too vague to have practical significance for decision-making when principles are in conflict. What is needed are specific examples within evaluation settings of protocols designed to deal with ethical/decision-making problems, for instance the disclosure of confidential information, and its consequences (e.g. Imber, Glanz, Elkin, Stotsky, Boyer, & Leber, 1986). Several issues regarding confidentiality apply to most evaluators who work in services or outcome research. First, the process of informed consent must be structured so that the participant understands what is being asked of her/him and under what circumstances confidentiality will be broken. It is critical that the role of evaluators be clear to the child and adolescent clients, their family members, and those in the mental health service system who are involved in the evaluation effort. Under the guise of neutral observers, data collectors and analysts ask questions similar to clinicians conducting a typical intake interview; yet clients must be able to differentiate evaluators appropriately from their clinicians. Evaluators and clinicians may be guided by related ethical principles and legal mandates. The evalu-
et al
ator must make clear to the participant that the evaluation staff are separate from the services delivery staff, how they will handle confidential information and under what conditions disclosure may take place. Second, the data collection and management process must include procedures to protect the privacy of evaluation participants. One procedure is to train field data collectors, data managers, and analysts on the importance of confidentiality, with specific attention to their personal responsibility for protecting the privacy of participants. Another is the use of a computer link file that can be accessed only by the evaluation team and is used to remove identifying information from the stored data. In addition, the storage and handling of the completed data collection materials must insure protection of confidential information and access only by those with a legitimate role in the evaluation. More specific discussion of these first two issues can be found in Sieber (1992). Evaluators must be prepared to make decisions about disclosure of confidential information that indicates risk of suicide, abuse, serious harm to the participant. or potential harm to others by the participant. This article details the experience of the investigators of the Fort Bragg Evaluation Project (Bickman, Heflinger, Pion, & Behar, 1992; Bickman, Guthrie, Foster. Lambert, Summerfelt, Breda, & Heflinger, 1995) in the development and application of a standardized process for considering disclosure of confidential information obtained during evaluation. The decision paradigms developed for the Fort Bragg Project were based on ethical principles of confidentiality, nonmaleficence. and the state mandatory reporting statutes of North Carolina. Georgia, and Kentucky where the evaluation was undertaken. Finally, the consequences of using such decision paradigms. including the number of disclosures made and the subsequent effects on family participation in the study, are described.
ETHICAL
PRINCIPLES AND REPORTING MANDATES
Evaluators and other researchers are guided by ethical principles that essentially rest on the international charters, the Declarations of Helsinki (World Medical Association, 1975) and the Nuremberg Code (Trials of War Criminals before the Nuremberg Military Tribunals, 194661949). These sources have been subsequently supported and elaborated on by federal regulations put forth by the U.S. Department of Health and Humans Services (1983) and the American Psychological Association (1992) among others. In general, three principles apply to the protection of research and evaluation participants: (1) beneficence and nonmaleficence, protecting the welfare of par-
Handling Confidentiality ticipants; (2) autonomy, respecting individual freedom and privacy; (3) justice (Munir & Earls, 1992). The Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978) identified specific norms of scientific research including the identification of consequences and the assessment of risks for individual participants. Among the risks most often faced by participants are threats to an individual’s privacy and the confidentiality between the participant and researcher (for more see American Psychological Association, 1992; Mason & Watts, 1987). Protection of privacy and assurance of confidentiality are critical not only as general ethical guidelines for clinicians and evaluators alike, but also for the collection of valid data, particularly in the conduct of socially sensitive research including mental health symptomology, and abuse and neglect issues. Clients as well as evaluation participants are much more likely to reveal accurate information if they believe the information will be kept in confidence (Nicolai & Scott, 1994; Melton & Gray, 1988; Taube & Elwork, 1990). Information about participants obtained during evaluation must be kept confidential unless consent is given in advance by the participant (Keith-Spiegel & Koocher, 1985). The information gained is privileged and the individual participant, not the evaluator, maintains ownership. However, privilege is greatly diminished by laws that mandate the reporting of cases of suspected child abuse and there are limits to the confidentiality that can be assured. All 50 states mandate the reporting of a reasonable suspicion of child abuse by human service professionals. Some states, including North Carolina, Georgia, and Kentucky where this evaluation was carried out, have included all persons in the duty to report (Mason &Watts, 1987; Nurcombe & Partlett, 1994). Suspected abuse is to be reported to child welfare agencies in all states and additionally, in some states, to police, courts, or the district attorney. Additionally, when children are involved, evaluators or clinicians may be justified in further disclosures. Although the maintenance of confidentiality has generally been emphasized above other potential actions (Melton 1989) the need and responsibility to share information with the child’s or adolescent’s parent has been raised in circumstances when “a researcher learns that a youth is engaging in impulsive, personally risky behavior” (p. 36s). Clinical concerns regarding protection of the child or others from harm have been judged as overriding the maintenance of confidentiality (Stanley & Sieber, 1992). Parents, unless legal guardianship has been removed, should be informed about the high-risk behavior in keeping with their responsibility for protecting the child from harm. In some circumstances, disclosure to others may also be warranted (Koocher & Keith-Spiegel, 1990).
177
Mulvey and Phelps (1988) pointed out that apparent ethical dilemmas are simply not cases of ethical principles protecting individuals versus legal mandates; there is an additional ethical obligation to protect society or, more specifically, third parties. They asserted that if serious crimes are revealed, breaches of confidentiality may be justified. Although no case law imposes mandatory reporting by evaluators in such circumstances, Appelbaum and Rosenbaum (1989) have discussed the possibility that the Turusoff duty to protect does apply to research settings. However, the authors took a narrow view of such obligations, declaring research assistants and data collectors to fall outside the duty. Although the legal limits may be rather narrow or uncertain, ethical obligations by evaluators may be broader, calling for action by any member of the evaluation staff.
STANDARDIZING THE DECISION-MAKING PROCESS The Fort Bragg Evaluation Project was designed as an independent evaluation of the Fort Bragg Child and Adolescent Mental Health Demonstration (Behar, Bickman, Lane, Keeton, & Schwartz, 1995), which provided a comprehensive system of mental health and substance abuse services within the Fort Bragg catchment area surrounding Fayetteville, North Carolina. In addition to the site in North Carolina, comparison sites in Kentucky and Georgia were studied. The Evaluation Project, supported jointly by the U.S. Department of the Army and NIMH, assessed a sample of 984 families over time to examine child and family functioning, service utilization and costs, and satisfaction with services. Self-report surveys and in-person interviews were conducted three times, as a child was admitted to mental health services and after two 6-month follow-up intervals. Development of a Standardized Confidential Information
Process for Disclosing
The assumption was made early in the project by senior evaluation staff that ethical dilemmas would be faced by those collecting or coming into contact with information from participants. They felt that it was important that standardized procedures for dealing with this complicated issue be developed and implemented in a proactive manner rather than in reaction to particular situations as they arose. Care was taken to balance rigorous evaluation methods and mandatory reporting laws against the need to protect the privacy of the participants and to protect the participants and third parties from harm. All instruments and procedures were reviewed and approved by the Institutional Review Board and the university legal counsel.
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First, participant consent forms were developed that summarized the project and informed participants of the evaluation procedures, their rights as participants, and the limits of confidentiality. The importance of this step has been highlighted by Sieber (1992) and Stanley and Sieber (1992). Project staff identified, in writing and the verbal consent explanation, situations in which information obtained during the course of the evaluation would be disclosed to the child’s parent, service provider, or appropriate state authority because of a potential risk to the participant or others. The second step was to train all staff having contact with participants, collecting data, or in supervisory positions. Materials were constructed after a review of the related literature and state laws and were revised following a review by several mental health professionals judged to have considerable expertise in this area. Next, an algorithm, or decision-tree, was developed to guide project staff in assessing whether risk was present in each of three potentially critical situations: (a) abuse, (b) suicide, and (c) serious harm toward others. These algorithms specified the steps that staff would take when risk was judged to be present, including consulting with and informing their supervisors and the appropriate agency. An example of an algorithm is included below. In order to be useful to the staff, thorough training was provided, a notebook containing the algorithm and all necessary support material (e.g. needed phone numbers) accompanied other data collection materials to each interview, and ongoing consultation was available. In addition to clarifying situations in which the need to disclose confidential information was not immediately evident, a consultant debriefed interviewers if they had become very concerned about the information collected during the interviews. Staff with face-to-face contact with children with serious emotional problems and their families are placed in the difficult situation of objectively gathering information for evaluation purposes that at times may be personally frustrating or “heart-breaking”. The Disclosure Algorithms Decision paradigms, algorithms, or trees can be used to standardize decision-making and to reduce the degree of formal training and experience needed by the performer. They are useful in situations not confronted frequently or when the consequences of error are potentially serious (Wexley & Latham, 1991). The use of algorithms has become more prominent recently in training health services providers to diagnose conditions and prescribe treatment (e.g. Newens, Forster, Kay & Kirkup, 1993; Yager, Bird, Staghezza-Jaramillo, & Gould, 1993). Algorithms lead the reader through a series of questions with limited range of responses, typically yes or no. Guiding questions are generally included in a circle or polygon and the actions to be followed in a box; this
structure helps guide the reader through the standardized steps. The algorithm developed for possible endangerment of self or others is presented in Figure 1. In this evaluation, the staff member who collected data directly from children and their parents used the algorithm. The information from the structured diagnostic interview administered to children and their parents (i.e. the Child Assessment Schedule, CAS; Hodges, Kline, Stern, Cytryn, & McKnew, 1982) provided the trigger for initiating use of the algorithm. Question 1 asks whether the questions about suicidal thoughts or attempts were endorsed. If yes, the staff member was to disclose this information to the appropriate person at the end of that interview session. If the child was living with family members, the parent who provided transportation to the interview was to be informed. The child’s clinician was to be notified if the child was currently in treatment. Question 2 asks about a residential treatment setting; if the child who endorsed a suicide item was residing in the psychiatric hospital, residential treatment center, or group home, then the relevant treating professional was to be identified and informed. In residential treatment settings, the professional staff, not the parent, has the immediate responsibility for protecting the child from harm. It should be noted that the algorithm included steps to inform the child about the disclosure as well as instructions to stay with the child to assure safety. Question 7 did not rely on a specific question, but on any information obtained during the interview that indicated potential harm towards others. For example, during questioning about family relationships, one adolescent participant informed the evaluation staff that he had a plan to seriously harm a sibling. The algorithm guided the staff in decisionmaking and required reporting behavior. Several additional features of the algorithm used in this evaluation should be emphasized. Note A (see Figure 1) reminded the staff that consultation was always available; a clinical psychologist or social worker was available 24 hours a day on an emergency on-call basis. Note B referred to a script for the staff to use when informing the child or parent that confidentiality must be broken. This script was rehearsed during the training session. but was available in the notebook taken to all interviews. Each box specifying the action to be taken included a reminder to let supervisory staff, in this case the site coordinator, know about the situation. These disclosures were logged for site management purposes, but kept separate from other evaluation data collection and provided the data used below to explore the consequences of disclosure to the project. This log was recommended by the university legal counsel to provide needed backup in the case of litigation following disclosure: however, it was never used for this purpose.
Handling Confidentiality
~~~ self wnhm past two weeks (refer to
0
1
T
81
NO
INXRTAIN
I
.
I
8
NO
’
coordinator and request they advise you on what to do next. Tell child what will
1
Inform the child of the reporting requirement.
1 GotonumberS
Inform the chiId and charge nurse of the reporting requirement.
I
Consult site coordiitor.~ Stay with child until determination is made. Tell child what will happen next.
NO
179
they join both of you to discuss the situation. Contact your site coordinator and request they advise you on what to do next. Tell child what will haooen next.
@I
1
Figure 1. Algorithm for disclosing information of possible endangerment of self or others.
CONSEQUENCES OF DISCLOSURE OF THREATS TO SELF In order to study the nature and consequences of disclosures made during the course of the evaluation, the disclosure logs mentioned above were examined. A total of 35 disclosures were made during the course of the three waves of data collection for 984 children and adolescents who comprised the overall evaluation sample. Fifteen of these disclosures involved reports of abuse, 18 of suicidal intent, and two of serious threats toward others. Information on the disclosures made about suicidal intent is examined further in order to illustrate the use of the algorithm described above. The 18 incidents of disclosure for suicidal intent involved 18 different children and adolescents. Fourteen of these disclosures were made at Wave 1 of the study and two each were made at Waves 2 and 3. The majority of the disclosures (15 of 18 or 84%) resulted from information disclosed by the child or adolescent during the private in-person CAS interviews (see no. 1 in Figure 1). During the parent interviews about the same children, none of the parents endorsed the parallel items indicating that their children had thoughts and/or had attempted suicide. The three remaining disclosures resulted from phone calls to the evaluation staff by parents or institutional caretakers. The disclosure subsample included equal numbers of
girls and boys who ranged in age from 8 to 17 years (mean of 11.O and mode of 9 years), with most being preadolescent. The majority of this subsample (89%) lived in two-parent households. Of the 18 children about whom disclosures were made, six were African-American, nine were Caucasian, one was Hispanic, and two were identified as “other”. Proportionately, compared with the overall evaluation sample (see Bickman et al., 1995), however, there were more African-Americans (30% uersus 17%) and females (50% versus 37%) represented in this group. On average, children in the disclosure subsample were substantially more impaired than children in the evaluation sample in terms of level of psychosocial functioning and psychopathology. The mean functioning impairment score for the disclosure sample was 70.8, as measured by the Child and Adolescent Functioning Assessment Scale (CAFAS; Hodges, 1990; Hodges, Bickman, Ring-Kurtz, & Reiter, 1992), approximately one standard deviation higher than the mean of 45.4 for the overall evaluation sample. Scores of 70 and above indicate severe impairment and the need for long-term treatment (Hodges, 1994). Similarly, the mean psychopathology score as measured by the CAS, which is the total number of items endorsed by the child, was 74.1 for the disclosure subsample, four standard deviations higher than the mean of 22.2 for the overall evaluation sample. The two most common diagnoses for children
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CRAIG ANNE HEFLINGER
and adolescents in the disclosure subsample were adjustment (6) and mood disorders (5). Other diagnoses included substance abuse and psychosis. At the time disclosure was made, all but two of the 18 children were receiving mental health services. Of those children, four were in psychiatric hospitals, three were receiving some form of intermediate care (therapeutic foster home, therapeutic group home, or day treatment facility), and nine were receiving services in an outpatient setting. Of concern to evaluation staff was the subsequent effect of disclosure on the child and on continued family participation in the study. First, there were no suicides for this subsample of children following the disclosure. Furthermore, all 18 children and their families about whom disclosures of suicidal intent were made continued to participate in the evaluation after the disclosures were made for at least one additional wave of data collection. This compares favorably to an attrition rate of 14% for the overall sample (see Bickman et al.. 1995).
DISCUSSION AND IMPLICATIONS This article discusses the ethical and legal principles that influence disclosure of confidential information collected during the evaluation of client outcomes of mental health services and a specific example of a decisionmaking algorithm developed to guide staff members in making disclosures. As managed care becomes more prevalent and the collection of outcome measures is strongly emphasized, those in the position of collecting outcome data will be faced with information about clients in mental health services who are in danger of being abused or harming themselves or others. This problem needs recognition, and processes for ethically and legally handling this sensitive information should be put into place in all evaluations. In The Fort Bragg Evaluation Project, the decisionmaking algorithm resulted in the disclosure of confidential information in fewer than 5% of cases. Approximately half the disclosures were made on the basis of abuse and half on the basis of self-harm or harm toward others. The staff members used the algorithms to determine the need to disclose confidential information and to take action to protect the child. Clearly, the number of disclosures is low compared with the incidence one would expect of child abuse or suicidal intent in a population of children and adolescents in treatment for emotional and behavioral disorders. This apparent underreporting reflects the high concern of front-line staff members to protect the privacy of participants unless critically concerned about safety and corresponds to reports from clinical practice. The failure of some clinicians to report child abuse prompted researchers
et al.
to identify factors such as clinical judgement, client characteristics, the certainty and evidence of abuse, and procedures for informing clients of confidentiality limits (Kalichman & Brosig, 1993; Kalichman & Craig, 1991; Nicolai & Scott, 1994). However, underreporting emphasizes, rather than mitigates, the need for standardized decision-making tools. Examination of the characteristics of the children for whom confidential information was disclosed following the disclosure algorithm raises several issues for others who work with this population. First, those who were revealing to evaluation staff their suicidal thoughts and/or behavior were primarily children between ages 9 and 11 years, not an adolescent group in regard to whom parents and professionals may be more sensitized to watch for suicidal threats. Furthermore, parents were unaware of these serious thoughts and behavior. The evaluation staff was placed in the position to provide protection for these troubled children. In addition, these children were, indeed, displaying significantly more problems in psychosocial functioning and psychopathology than their counterparts who were also in formal treatment services for emotional and behavioral problems. The greater level of pathology supports the validity of the criteria for disclosing reports of selfharm. Finally, a primary concern to evaluators related to disclosing confidential information also was disconfirmed. The process of making such disclosures according to standardized protocols and legal mandates did not appear to impact negatively upon the subsequent participation in the evaluation of those families.
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and Program Planning, Vol. 19, No. 2. pp. 175-182, 1996 Cmvright IT+1996 Elsevier Science Ltd Printed’k d&‘Britain. All rights reserved 0149.7189/96 $15.00+0.00
Pergamon
HANDLING CONFIDENTIALITY AND DISCLOSURE IN THE EVALUATION OF CLIENT OUTCOMES IN MANAGED MENTAL HEALTH SERVICES FOR CHILDREN AND ADOLESCENTS
CRAIG ANNE HEFLINGER, Vanderbilt
CAROL T. NIXON Center for Mental
Health
and KARL HAMNER
Policy
ABSTRACT In the process of examining client outcomes of mental health services, evaluators often find themselves immersed in ethical and legal dilemmas surrounding participant privacy and the confidentiality of information gained in the process of the evaluation. Evaluators must be prepared to make decisions about disclosure of confidential information that indicates risk of abuse or serious harm to the client or by the client toward another. This article details the experience of the investigators of the Fort Bragg Evaluation Project in the development and application of standardized decision algorithms for considering disclosure of confidential information obtained during the evaluation. The consequences of using such decision paradigms, including the number of disclosures made and the subsequent effects on family participation in the study, are also described. Copyright 0 1996 Elsevier Science Ltd
by many stakeholders, from provider groups and advocates to administrators and researchers. The methods for evaluating mental health services are varied and extensive, and recommendations and “how to’s” for taking on these tasks are described in detail elsewhere (e.g. Bickman & Rog, 1992; Burns & Friedman, 1990). What has not been discussed in detail, however, are the ethical and legal dilemmas surrounding confidentiality and disclosure in which evaluators find themselves when client outcomes are examined. Children and adolescents with emotional, behavioral, and neurobiological problems and their families are the target population in mental health services evaluation. By virtue of the reasons for which these children access the service system, the evaluator is faced with sensitive information that requires privacy and deliberate hand-
INTRODUCTION The evaluation of client outcomes is a critical piece of the puzzle in examining the effects of managed mental health. In the area of children’s mental health, as in mental health services in general, the many variations of managed care are changing the service delivery picture. From health management organizations and preferred provider networks to precertification requirements and establishing intermediate services in order to reduce the need for restrictive and expensive hospitalization, the implementation of managed care has meant changes, sometimes drastic, in the way that mental health service delivery is experienced at the “street level” (Lipsky, 1980) where children and their families seek services. The evaluation of these changes has been called for
The authors would like to acknowledge the contributions of Dr Barry Nurcombe and Dr Kay Hodges in the development of the disclosure algorithm and in providing feedback on this manuscript. In addition, the many children and parents who provided data to the Fort Bragg Evaluation Project and the staff members who contributed to the effort are much appreciated. This work was supported by the U.S. Army Health Services Command (DA-DAlO-89-C-0013) as a subcontract from the North Carolina Department of Human Resources/Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, and by grants to Dr Leonard Bickman (ROIMH-46136 and A5T32MH-19544) from the National Institute of Mental Health. Requests for reprints and more information should be addressed to Dr Heflinger at the Center for Mental Health Policy. 1207 18th Avenue South, Nashville, TN 37212, U.S.A. 175
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ling. The “data” collected about client outcomes considered relevant to understanding the effects of mental health services could include information about serious behavioral problems, substance abuse, family relationship issues, suicidal thoughts and acts, and sexual, physical, or emotional abuse. Furthermore, the use of multiple informants to gather information about each client, recommended in order to obtain a more complete picture and ecologically valid assessment of child and family functioning (Andrews, Garrison, Jackson, Addy, & McKeown, 1993; Epanchin & Rennells, 1989; Renouf & Kovacs, 1994; Stranger & Lewis, 1993) increases the odds of gleaning reports of child or adolescent high-risk behavior or abuse or neglect from caregivers or others. Evaluators are subsequently forced into a dilemma as they weigh the competing ethical principles of confidentiality, protection of participants from harm, and the legal mandates to report child maltreatment. Ethically responsible evaluation should anticipate such circumstances prior to the start of data collection and develop a protocol that addresses these issues (Sieber, 1992). Although much has been written about safeguarding information obtained during research (e.g. Koocher & Keith-Spiegel, 1990) very little has been written about the disclosure of information gained in the conduct of evaluation and the subsequent consequences. Much of what does appear in the literature involves high-risk behavior in AIDS research (e.g. Melton, 1989; Melton & Gray, 1988; Rotheram-Borus & Koopman, 1992). Mental health services evaluation, however, is seldom addressed. Existing published ethical principles (e.g. American Psychological Association, 1992; Joint Commission on Standards for Educational Evaluation, 1994) are too vague to have practical significance for decision-making when principles are in conflict. What is needed are specific examples within evaluation settings of protocols designed to deal with ethical/decision-making problems, for instance the disclosure of confidential information, and its consequences (e.g. Imber, Glanz, Elkin, Stotsky, Boyer, & Leber, 1986). Several issues regarding confidentiality apply to most evaluators who work in services or outcome research. First, the process of informed consent must be structured so that the participant understands what is being asked of her/him and under what circumstances confidentiality will be broken. It is critical that the role of evaluators be clear to the child and adolescent clients, their family members, and those in the mental health service system who are involved in the evaluation effort. Under the guise of neutral observers, data collectors and analysts ask questions similar to clinicians conducting a typical intake interview; yet clients must be able to differentiate evaluators appropriately from their clinicians. Evaluators and clinicians may be guided by related ethical principles and legal mandates. The evalu-
et al
ator must make clear to the participant that the evaluation staff are separate from the services delivery staff, how they will handle confidential information and under what conditions disclosure may take place. Second, the data collection and management process must include procedures to protect the privacy of evaluation participants. One procedure is to train field data collectors, data managers, and analysts on the importance of confidentiality, with specific attention to their personal responsibility for protecting the privacy of participants. Another is the use of a computer link file that can be accessed only by the evaluation team and is used to remove identifying information from the stored data. In addition, the storage and handling of the completed data collection materials must insure protection of confidential information and access only by those with a legitimate role in the evaluation. More specific discussion of these first two issues can be found in Sieber (1992). Evaluators must be prepared to make decisions about disclosure of confidential information that indicates risk of suicide, abuse, serious harm to the participant. or potential harm to others by the participant. This article details the experience of the investigators of the Fort Bragg Evaluation Project (Bickman, Heflinger, Pion, & Behar, 1992; Bickman, Guthrie, Foster. Lambert, Summerfelt, Breda, & Heflinger, 1995) in the development and application of a standardized process for considering disclosure of confidential information obtained during evaluation. The decision paradigms developed for the Fort Bragg Project were based on ethical principles of confidentiality, nonmaleficence. and the state mandatory reporting statutes of North Carolina. Georgia, and Kentucky where the evaluation was undertaken. Finally, the consequences of using such decision paradigms. including the number of disclosures made and the subsequent effects on family participation in the study, are described.
ETHICAL
PRINCIPLES AND REPORTING MANDATES
Evaluators and other researchers are guided by ethical principles that essentially rest on the international charters, the Declarations of Helsinki (World Medical Association, 1975) and the Nuremberg Code (Trials of War Criminals before the Nuremberg Military Tribunals, 194661949). These sources have been subsequently supported and elaborated on by federal regulations put forth by the U.S. Department of Health and Humans Services (1983) and the American Psychological Association (1992) among others. In general, three principles apply to the protection of research and evaluation participants: (1) beneficence and nonmaleficence, protecting the welfare of par-
Handling Confidentiality ticipants; (2) autonomy, respecting individual freedom and privacy; (3) justice (Munir & Earls, 1992). The Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978) identified specific norms of scientific research including the identification of consequences and the assessment of risks for individual participants. Among the risks most often faced by participants are threats to an individual’s privacy and the confidentiality between the participant and researcher (for more see American Psychological Association, 1992; Mason & Watts, 1987). Protection of privacy and assurance of confidentiality are critical not only as general ethical guidelines for clinicians and evaluators alike, but also for the collection of valid data, particularly in the conduct of socially sensitive research including mental health symptomology, and abuse and neglect issues. Clients as well as evaluation participants are much more likely to reveal accurate information if they believe the information will be kept in confidence (Nicolai & Scott, 1994; Melton & Gray, 1988; Taube & Elwork, 1990). Information about participants obtained during evaluation must be kept confidential unless consent is given in advance by the participant (Keith-Spiegel & Koocher, 1985). The information gained is privileged and the individual participant, not the evaluator, maintains ownership. However, privilege is greatly diminished by laws that mandate the reporting of cases of suspected child abuse and there are limits to the confidentiality that can be assured. All 50 states mandate the reporting of a reasonable suspicion of child abuse by human service professionals. Some states, including North Carolina, Georgia, and Kentucky where this evaluation was carried out, have included all persons in the duty to report (Mason &Watts, 1987; Nurcombe & Partlett, 1994). Suspected abuse is to be reported to child welfare agencies in all states and additionally, in some states, to police, courts, or the district attorney. Additionally, when children are involved, evaluators or clinicians may be justified in further disclosures. Although the maintenance of confidentiality has generally been emphasized above other potential actions (Melton 1989) the need and responsibility to share information with the child’s or adolescent’s parent has been raised in circumstances when “a researcher learns that a youth is engaging in impulsive, personally risky behavior” (p. 36s). Clinical concerns regarding protection of the child or others from harm have been judged as overriding the maintenance of confidentiality (Stanley & Sieber, 1992). Parents, unless legal guardianship has been removed, should be informed about the high-risk behavior in keeping with their responsibility for protecting the child from harm. In some circumstances, disclosure to others may also be warranted (Koocher & Keith-Spiegel, 1990).
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Mulvey and Phelps (1988) pointed out that apparent ethical dilemmas are simply not cases of ethical principles protecting individuals versus legal mandates; there is an additional ethical obligation to protect society or, more specifically, third parties. They asserted that if serious crimes are revealed, breaches of confidentiality may be justified. Although no case law imposes mandatory reporting by evaluators in such circumstances, Appelbaum and Rosenbaum (1989) have discussed the possibility that the Turusoff duty to protect does apply to research settings. However, the authors took a narrow view of such obligations, declaring research assistants and data collectors to fall outside the duty. Although the legal limits may be rather narrow or uncertain, ethical obligations by evaluators may be broader, calling for action by any member of the evaluation staff.
STANDARDIZING THE DECISION-MAKING PROCESS The Fort Bragg Evaluation Project was designed as an independent evaluation of the Fort Bragg Child and Adolescent Mental Health Demonstration (Behar, Bickman, Lane, Keeton, & Schwartz, 1995), which provided a comprehensive system of mental health and substance abuse services within the Fort Bragg catchment area surrounding Fayetteville, North Carolina. In addition to the site in North Carolina, comparison sites in Kentucky and Georgia were studied. The Evaluation Project, supported jointly by the U.S. Department of the Army and NIMH, assessed a sample of 984 families over time to examine child and family functioning, service utilization and costs, and satisfaction with services. Self-report surveys and in-person interviews were conducted three times, as a child was admitted to mental health services and after two 6-month follow-up intervals. Development of a Standardized Confidential Information
Process for Disclosing
The assumption was made early in the project by senior evaluation staff that ethical dilemmas would be faced by those collecting or coming into contact with information from participants. They felt that it was important that standardized procedures for dealing with this complicated issue be developed and implemented in a proactive manner rather than in reaction to particular situations as they arose. Care was taken to balance rigorous evaluation methods and mandatory reporting laws against the need to protect the privacy of the participants and to protect the participants and third parties from harm. All instruments and procedures were reviewed and approved by the Institutional Review Board and the university legal counsel.
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First, participant consent forms were developed that summarized the project and informed participants of the evaluation procedures, their rights as participants, and the limits of confidentiality. The importance of this step has been highlighted by Sieber (1992) and Stanley and Sieber (1992). Project staff identified, in writing and the verbal consent explanation, situations in which information obtained during the course of the evaluation would be disclosed to the child’s parent, service provider, or appropriate state authority because of a potential risk to the participant or others. The second step was to train all staff having contact with participants, collecting data, or in supervisory positions. Materials were constructed after a review of the related literature and state laws and were revised following a review by several mental health professionals judged to have considerable expertise in this area. Next, an algorithm, or decision-tree, was developed to guide project staff in assessing whether risk was present in each of three potentially critical situations: (a) abuse, (b) suicide, and (c) serious harm toward others. These algorithms specified the steps that staff would take when risk was judged to be present, including consulting with and informing their supervisors and the appropriate agency. An example of an algorithm is included below. In order to be useful to the staff, thorough training was provided, a notebook containing the algorithm and all necessary support material (e.g. needed phone numbers) accompanied other data collection materials to each interview, and ongoing consultation was available. In addition to clarifying situations in which the need to disclose confidential information was not immediately evident, a consultant debriefed interviewers if they had become very concerned about the information collected during the interviews. Staff with face-to-face contact with children with serious emotional problems and their families are placed in the difficult situation of objectively gathering information for evaluation purposes that at times may be personally frustrating or “heart-breaking”. The Disclosure Algorithms Decision paradigms, algorithms, or trees can be used to standardize decision-making and to reduce the degree of formal training and experience needed by the performer. They are useful in situations not confronted frequently or when the consequences of error are potentially serious (Wexley & Latham, 1991). The use of algorithms has become more prominent recently in training health services providers to diagnose conditions and prescribe treatment (e.g. Newens, Forster, Kay & Kirkup, 1993; Yager, Bird, Staghezza-Jaramillo, & Gould, 1993). Algorithms lead the reader through a series of questions with limited range of responses, typically yes or no. Guiding questions are generally included in a circle or polygon and the actions to be followed in a box; this
structure helps guide the reader through the standardized steps. The algorithm developed for possible endangerment of self or others is presented in Figure 1. In this evaluation, the staff member who collected data directly from children and their parents used the algorithm. The information from the structured diagnostic interview administered to children and their parents (i.e. the Child Assessment Schedule, CAS; Hodges, Kline, Stern, Cytryn, & McKnew, 1982) provided the trigger for initiating use of the algorithm. Question 1 asks whether the questions about suicidal thoughts or attempts were endorsed. If yes, the staff member was to disclose this information to the appropriate person at the end of that interview session. If the child was living with family members, the parent who provided transportation to the interview was to be informed. The child’s clinician was to be notified if the child was currently in treatment. Question 2 asks about a residential treatment setting; if the child who endorsed a suicide item was residing in the psychiatric hospital, residential treatment center, or group home, then the relevant treating professional was to be identified and informed. In residential treatment settings, the professional staff, not the parent, has the immediate responsibility for protecting the child from harm. It should be noted that the algorithm included steps to inform the child about the disclosure as well as instructions to stay with the child to assure safety. Question 7 did not rely on a specific question, but on any information obtained during the interview that indicated potential harm towards others. For example, during questioning about family relationships, one adolescent participant informed the evaluation staff that he had a plan to seriously harm a sibling. The algorithm guided the staff in decisionmaking and required reporting behavior. Several additional features of the algorithm used in this evaluation should be emphasized. Note A (see Figure 1) reminded the staff that consultation was always available; a clinical psychologist or social worker was available 24 hours a day on an emergency on-call basis. Note B referred to a script for the staff to use when informing the child or parent that confidentiality must be broken. This script was rehearsed during the training session. but was available in the notebook taken to all interviews. Each box specifying the action to be taken included a reminder to let supervisory staff, in this case the site coordinator, know about the situation. These disclosures were logged for site management purposes, but kept separate from other evaluation data collection and provided the data used below to explore the consequences of disclosure to the project. This log was recommended by the university legal counsel to provide needed backup in the case of litigation following disclosure: however, it was never used for this purpose.
Handling Confidentiality
~~~ self wnhm past two weeks (refer to
0
1
T
81
NO
INXRTAIN
I
.
I
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’
coordinator and request they advise you on what to do next. Tell child what will
1
Inform the child of the reporting requirement.
1 GotonumberS
Inform the chiId and charge nurse of the reporting requirement.
I
Consult site coordiitor.~ Stay with child until determination is made. Tell child what will happen next.
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they join both of you to discuss the situation. Contact your site coordinator and request they advise you on what to do next. Tell child what will haooen next.
@I
1
Figure 1. Algorithm for disclosing information of possible endangerment of self or others.
CONSEQUENCES OF DISCLOSURE OF THREATS TO SELF In order to study the nature and consequences of disclosures made during the course of the evaluation, the disclosure logs mentioned above were examined. A total of 35 disclosures were made during the course of the three waves of data collection for 984 children and adolescents who comprised the overall evaluation sample. Fifteen of these disclosures involved reports of abuse, 18 of suicidal intent, and two of serious threats toward others. Information on the disclosures made about suicidal intent is examined further in order to illustrate the use of the algorithm described above. The 18 incidents of disclosure for suicidal intent involved 18 different children and adolescents. Fourteen of these disclosures were made at Wave 1 of the study and two each were made at Waves 2 and 3. The majority of the disclosures (15 of 18 or 84%) resulted from information disclosed by the child or adolescent during the private in-person CAS interviews (see no. 1 in Figure 1). During the parent interviews about the same children, none of the parents endorsed the parallel items indicating that their children had thoughts and/or had attempted suicide. The three remaining disclosures resulted from phone calls to the evaluation staff by parents or institutional caretakers. The disclosure subsample included equal numbers of
girls and boys who ranged in age from 8 to 17 years (mean of 11.O and mode of 9 years), with most being preadolescent. The majority of this subsample (89%) lived in two-parent households. Of the 18 children about whom disclosures were made, six were African-American, nine were Caucasian, one was Hispanic, and two were identified as “other”. Proportionately, compared with the overall evaluation sample (see Bickman et al., 1995), however, there were more African-Americans (30% uersus 17%) and females (50% versus 37%) represented in this group. On average, children in the disclosure subsample were substantially more impaired than children in the evaluation sample in terms of level of psychosocial functioning and psychopathology. The mean functioning impairment score for the disclosure sample was 70.8, as measured by the Child and Adolescent Functioning Assessment Scale (CAFAS; Hodges, 1990; Hodges, Bickman, Ring-Kurtz, & Reiter, 1992), approximately one standard deviation higher than the mean of 45.4 for the overall evaluation sample. Scores of 70 and above indicate severe impairment and the need for long-term treatment (Hodges, 1994). Similarly, the mean psychopathology score as measured by the CAS, which is the total number of items endorsed by the child, was 74.1 for the disclosure subsample, four standard deviations higher than the mean of 22.2 for the overall evaluation sample. The two most common diagnoses for children
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and adolescents in the disclosure subsample were adjustment (6) and mood disorders (5). Other diagnoses included substance abuse and psychosis. At the time disclosure was made, all but two of the 18 children were receiving mental health services. Of those children, four were in psychiatric hospitals, three were receiving some form of intermediate care (therapeutic foster home, therapeutic group home, or day treatment facility), and nine were receiving services in an outpatient setting. Of concern to evaluation staff was the subsequent effect of disclosure on the child and on continued family participation in the study. First, there were no suicides for this subsample of children following the disclosure. Furthermore, all 18 children and their families about whom disclosures of suicidal intent were made continued to participate in the evaluation after the disclosures were made for at least one additional wave of data collection. This compares favorably to an attrition rate of 14% for the overall sample (see Bickman et al.. 1995).
DISCUSSION AND IMPLICATIONS This article discusses the ethical and legal principles that influence disclosure of confidential information collected during the evaluation of client outcomes of mental health services and a specific example of a decisionmaking algorithm developed to guide staff members in making disclosures. As managed care becomes more prevalent and the collection of outcome measures is strongly emphasized, those in the position of collecting outcome data will be faced with information about clients in mental health services who are in danger of being abused or harming themselves or others. This problem needs recognition, and processes for ethically and legally handling this sensitive information should be put into place in all evaluations. In The Fort Bragg Evaluation Project, the decisionmaking algorithm resulted in the disclosure of confidential information in fewer than 5% of cases. Approximately half the disclosures were made on the basis of abuse and half on the basis of self-harm or harm toward others. The staff members used the algorithms to determine the need to disclose confidential information and to take action to protect the child. Clearly, the number of disclosures is low compared with the incidence one would expect of child abuse or suicidal intent in a population of children and adolescents in treatment for emotional and behavioral disorders. This apparent underreporting reflects the high concern of front-line staff members to protect the privacy of participants unless critically concerned about safety and corresponds to reports from clinical practice. The failure of some clinicians to report child abuse prompted researchers
et al.
to identify factors such as clinical judgement, client characteristics, the certainty and evidence of abuse, and procedures for informing clients of confidentiality limits (Kalichman & Brosig, 1993; Kalichman & Craig, 1991; Nicolai & Scott, 1994). However, underreporting emphasizes, rather than mitigates, the need for standardized decision-making tools. Examination of the characteristics of the children for whom confidential information was disclosed following the disclosure algorithm raises several issues for others who work with this population. First, those who were revealing to evaluation staff their suicidal thoughts and/or behavior were primarily children between ages 9 and 11 years, not an adolescent group in regard to whom parents and professionals may be more sensitized to watch for suicidal threats. Furthermore, parents were unaware of these serious thoughts and behavior. The evaluation staff was placed in the position to provide protection for these troubled children. In addition, these children were, indeed, displaying significantly more problems in psychosocial functioning and psychopathology than their counterparts who were also in formal treatment services for emotional and behavioral problems. The greater level of pathology supports the validity of the criteria for disclosing reports of selfharm. Finally, a primary concern to evaluators related to disclosing confidential information also was disconfirmed. The process of making such disclosures according to standardized protocols and legal mandates did not appear to impact negatively upon the subsequent participation in the evaluation of those families.
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