A Symptom Management Program for Psychotically Ill Adolescents and Their Families: Preliminay

Clinical Outcomes Karen Gulseth Schepp, PhD, RN

The author describes the preliminay results of a

clinical pilot study of a symptom managmmt pro-

gram for adolescents who are recoveiingtom a nondrug-induced psychotic episode. The program was designed as afollow-up treatmentfor adolescents who are living at home with theirfamilies. Prelimimyfindings showed that the program was gective in increasing the adolescents’ ability to recognize symptoms of their illnesses and to develop coping strategies to munage their symptoms.

Accepted for publication March 27, 1992. JCPNVoI. 5, No. 4, October - December, 1992

Karen Gulseth Schepp, PhD, RN, is Assistant Professor, Psychosocial Nursing Department, University of Washington, Seattle. T h e symptom management program was developed to assist adolescents recovering from nondrug-induced psychotic episodes to manage their illnesses. The need for the study stems from the dearth of follow-up treatment programs for severely mentally ill youths. Existing programs are limited in scope and do not address the multiple problems of daily living that result from psychotic illnesses. This program encompassed a multidimensional approach in symptom recognition and management targeted toward decreasing the occurrence and severity of symptoms experienced by these youths in the course of their recovery. The ultimate goal of the program was to increase the level of functioning of the youths over time as they and their families learn to live with the illnesses. The program was designed to be used by mental health nurses in providing follow-up treatment to psychotically iU adolescents and their families. The need for more scientifically tested nursing interventions to be used with mentally ill youths has been emphasized by child and adolescent mental health nurse leaders (Ween, 1990; McBride, 1988; Pothier, 1988; Siantz, 1990). The theoretical basis for the program is presented on pages 7-12. The program was developed for the purpose of increasing the level of functioning of psychotically ill adolescents by teaching them to recognize and manage their symptoms and to learn more about the family’s experience with a mentally ill adolescent. The specific aims of the program were to: ina-ewthe adolescents’awarenessof their symptmns, increase their range of coping strategies for managing their symptoms, increase their ability to manage or control their symptoms, decrease the occurrence and severity of symptoms, increase their sense of control over their illnesses, and 13

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Uses and Implications of the Contextual Approach to Child Custody Decisions

increase their level of functioning as they experience fewer and less Severe symptoms, and have a greater feehg of control over their symptoms and Illnesses.

Table 1. Coping Strategies 1.

Behavioral systematic relaxation abdormnal breathing m e t i n g Response (Stroebel, 1982)

2.

Cognitive cognitwe restructuring of unpleasant thoughts

Description of the Program A 12-monthpilot study was conducted to test the effectiveness of the program. Five adolescents, four boys and one grl, who had experienced nondrug related psychotic hesses and their famhes participated in the pilot study. Ten of the famdy members were parents and three were sibhgs of the adolescents. The famhes were recruited by school nurses and mental health counselors. The adolescents ranged in age from 14 to 18 years. All five adolescents were living at home with their parents and participating in their regular treatment program under the supervision of their psyduatrists. Information was kept on mdcations and other treatments they were receiving.

positive affirmations thought stoppmg declsionmaking 3.

Affective

moodalteration anger management time-out 4.

Basic CommunicationSkills

speaker/hstener Adapted from Markman, Blumberg, & Yanley. (In press). Pramitiz~eRelatiansfup Enhancement Program (PREP). Leader’s Mnniml.

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The strategies were adapted to the capabilities of the adolescents with the key principles being simplicity and concreteness.

The program was conducted over the course of 12 months. Twehour intensivetraining sessionswere held each week for six weeks followed by two-hour monthly sessions. The sessions were conducted in a group setting. During the first hour of each intensive training session all of the adolescents and their family members (parents and siblings) met together in a large group. They were taught to recognize physiologcal, behavioral, and emotional symptoms of stress and coping strategies to use in managing the symptoms. Different coping strategies were presented during each session of the six weeks of intensive training. The coping strateges that were taught are outhed in Table 1. 14

The strateges were adapted to the capabilities of the adolescents with the key principles being simplicity and concreteness. Activity handbooks were designed for each session to illustrate and summarize whbt was taught. Empowerment of the adolescents and their hmily members was emphasized throughout the program. During the second hour of each session, the parents, adolescents, and sibhgs were divided into three separate groups to practice the coping strategies, to provide emotional support to one another, and to discuss management of the youth’s illness. In the parent group, information about mental illness, medications, treatment services, and resources were presented in the form of handouts with discussions, video tapes, and guest speakers. The same format was followed for the monthly follow-up sessions in which the coping strategies presented during the six-week intensive training sessions were reviewed, practiced, and reinforced. Demonstration JCPNVol. 5, No. 4, October- December, 1992

videos and videotaped practice sessions were used to teach each coping strategy. Family members participated along with the adolescents in learning symptoms and the coping strategies. Family members were asked to encourage and assist the adolescents in using the strategies during the course of daily living. Throughout the program, the adolescents were assisted in iden-g specific symptoms that were particularly distressing to each of them and ones that they would like to be able to control. Those symptoms became the target symptoms for the individual during the training. The adolescents were then encouraged to try the different coping strategies to see if they could idenldy ones that worked particularly well for them in managing the symptoms. For example, one youth may be able to control paranoid thinking by using thought-stopping techniques. Another may find that increasing or decreasing activity may be more effective in relieving the paranoid thinking. Irritability may be relieved by anger management techniques or by stress reduction techniques. The unique needs of each individual were recognized and the program adapted to meet those needs. Evaluation The program was evaluated in a number of ways. Information was obtained throughout the study from all participants through verbal statements and open-ended evaluations of each session, and through open-ended questionnaires and research instruments. The nurse researchers also recorded their observations from each session and the sessions were videotaped for review. Several instruments were used to evaluate the specific aims of the program such as symptom recognition, symptom severity and frequency, coping strategies, and family functioning. The adolescents and their family members completed the instruments at the beginning and at the end of the six-week intensive training session and at the end of the monthly follow-up sessions. The instruments included the Early Signs Scale (Birchwood et al., 1989); Symptoms of Stress Inventory (Cowan, 1986); Hassles Scale: Child and Adolescent Version JCPNVol. 5, No. 4, October- December, 1992

(Kanner, Coyne, Schaefer, & Lazarus, 1991); Ways of Coping Scale (Lazarus & Folkman, 1984); and Family Apgar (Smikstein, 1978).The parents also completed the Uncertainty in Illness Scale, Parent/Child Version (Mishel, 1983); the Parental Coping Effort Scale (Schepp, 1991); and the Parental Management of Illness Scale (adapted from the Parental Control Preference Scale; Schepp & Kampf, 1990).A comprehensive evaluation of the program is currently being conducted. Preliminary Report of Pilot Study Findings Preliminary findings indicated the program was feasible and meaningful to all participants, including the researchers. Several factors were noted that influenced the adolescents’success in the program: Personal factors. The adolescents who were more successful in the program tended to: (a) have more insight into their illness, (b) be stabilized on psychotropic medications, (c) comply with their medication regimen and see their physicians regularly, (d) be motivated to participate in the program, (e) have more experience with the symptoms and know what symptoms to expect, and (f) have open and supportive communication with other family members. Environmental factors. Environmental factors influenced the adolescents’ success in the program. These factors were: (a) the family’s commitment to the program, (b) the family’s knowledge of the illness, (c) the farmly’s amount of experience with the adolescent’s symptoms, (d) the amount of support and encouragement the family gave to the adolescent, and (e)the amount of stress the adolescent experienced in hidher environment, such as at school. Family involvement Findings from the pilot study indicated that family involvement in the program was crucial. As parents and siblings learned more 15

Uses and Implications of the Contextual Approach to Child Custody Decisions

about their adolescent’s symptoms and the coping strategies he/she was being taught, they had developed a common language to use in communicating with the adolescent. They were able to remind him/her to use the coping strategies to manage the symptoms on a daily basis. The family members also reported using the coping strategies themselves to manage their symptoms of stress.

As parents and siblings learned more about

their adolescent’s symptoms and the coping strategies he/she was being taught, they had developed a common language to use in communicating with the adolescent.

Group structure. B r i n p g all participants together in a large group to learn the techniques and then dividing them into the parent, adolescent, and sibh g groups proved to be a strength of the program. The social support the parents, adolescents, and siblings received in the small group from others in the same situationswas noted frequently as very beneficial. The parents also appreciated their small group because of the rdormation they received about their adolescent’s illness. The parents expressed strong needs for support and information about the illness, which is consistent with the research findings with other families of the mentally ill. The siblings were able to talk openly about their experiences of having a mentally ill brother or sister. They expressed many feelings about the impact of the illness on their family life. The siblings also reported using the coping techniques to manage their stress on a daily basis. 16

The mentally ill adolescents had difficulty in discussing their symptoms openly with each other or with the nurse researchers. They tended to prefer to engage in individual parallel activities such as drawing pictures of their symptoms or of their feelings rather than discussing their symptoms or feelings. They did value, however, being in a group and commented on how reassuring it was to them to know others have similar illnesses and were experiencing sirmlar symptoms. They tended to compare the severity of their illnesses by observing how the other adolescents were functioning in the group. The more contact these adolescents had with each other and with the researchers, the more comfortable they felt and the more willing they were to talk about their illnesses. However, they tended to be quieter than the siblings but very observant and perceptive of others. Individualized content. As a result of the pilot study, program changes were made in the level and amount of content and in the pace at which the information was presented to the adolescents. Even though the content initially was modified and simplified considerably for the adolescents, additional changes had to be made to reduce the complexity, abstractness, and amount of content. Gearing the content to the adolescents’ capabilities was the biggest challenge in conducting the program. Continuous effort was necessary in refining the program to meet the unique needs of these special adolescents.

Program schedule. The protocol for admimstering the program was successful. The six-week intensive training period was important in building group cohesion and in presenting the coping strateges in a concentrated manner. Likewise, the monthly follow-up sessions paralleling the school year worked very well for reinforcing the symptom recognition and the use of the coping strategies. Repetition in demonstrating and practicing JCPNVol. 5, No.4, October- December, 1992

the strategies over time was important for the adolescents’ successful use of these techniques on a daily basis. The two-hour sessions were appropriate for the adolescents’ attention spans. Conclusion

Prelumnary findings from the clinical pilot study indicate the symptom management program described by the Author for psychotically ill adolescents and their families was effective in teaching them to recognize and cope with symptoms. Following a comprehensive evaluation of the pilot study data, the symptom management program, WLU be refined and retested on a larger scale. It is anticipated that the program will serve as a model for others to use in providing care to mentally ill adolescents and their families.As the trend continues to treat mentally ill youths on an outpatient rather than on an inpatient basis, mental health nurses in community settings can play a major role in helping the adolescents and their families cope with the symptoms that accompany severe mental illnesses. Acknowledgment. This paper was presented at the Third State of the Art and Science of Psychiatric Nursing Conference, ”Child and Adolescent Mental Health: Building the Base for Research and Practice,” sponsored by NIMH and the Clinical Center, National Institue of Health Nursing Department. Bethesda, MD, February 20-21,1992. The project was funded by NIMH, Faculty Scholar Award (#TO1 MH19150-03), Biomedical Research Support Grant from the University of Washington; and the School of Nursing, University of Washington. The author wishes to acknowledge the following persons in the conduct of this program: The Families, Marianne Kampf, DessyeDee Clark, Ellen Boyle, Amparo Rosen, Hsin-Chun (Jenny) Tsai, Helen Nakagawa-Kogan, and Trisha Shupe. References Birchwood, M., Smith, J., MacMillan, F., Hogg, B., Prasad, R., Harvey, C., & Bering, S. (1989). Predicting relapse in schizophrenia: The development and implementation of an early signs monitoring sys-

JCPNVol. 5, No. 4, October - December, 1992

tem using patients and families as observers, a preliminary investigation. Psychological Medicine, 19,649456. Cowan, D. (1986). Symptoms of stress inventory: Child and adolescent urnsion. Paper presented at Management of Stress Clinic, Psychosocial Nursing, 92-76, University of Washington. Kanner, A., C o p e , J., Schaefer, C., & Lazarus, R. (1981).Comparisons of two modes of stress measurement:: Daily hassles and uplifts versus major life events. Journal of Behnuioral Medicine, 4, 1-39. Killeen, M. (1990).Challenges and choices in child and adolescent mental health-psychiatric nursing. journal of Child and Adolescent Psychiatric and Mental Health Nursing, 3(4), 11?-119. Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. M a r h a n , H., Blumberg, S., & Stanley, S. (In press). Prevention and relationship enhancement program (PREP):: Leader‘s Manual. Denver, C O University of Denver, Center for Marital and Family Studies. McBride, A. (1988).Coming of age:: Child psychiatricnursing. Archives ofPsychiatric Nursing, 2(2), 5 7 4 . Mishel, M. (1983). Parents’ perception of uncertainty concerning their hospitalized child. Nursing Research, 32,324-330. Pothier, P. (1988).Graduate preparation in child and adolescent psychmtric and mental health nursing. Archiws OfPsychiatric Nursing, 2,17&172. Schepp, K. (1991).Factorial validity and reliability of the coping effort scale for parents of hospitalized children. Conference Proceedings:: Council of Nurse Researchers, Anterican Nurses Association. Schepp, K., & Kampf, M. (1990).Reliability and factorial validity of the parental control preferencescale. CommunimtingNulsing Resturrci, 23,79. Siantz, M. (1990).Issues facing child psychiatric nursing in the 1990s. Journal of Child 6 Adolescent Psychiatric 6 Mental Health Nursing, 3(2), 65-68. Smilkstein, G. (1978).The family APGAR: A proposal for a family function test and its use by physicians. journal OfFamily Practice, 6, 1231-1240. Stroebel, C. (1982).QR: The quieting response. New York: G. P. Putnam’s

sons. Reprints of this article are available from UMI Article Clearinghouse: 800/521-0600. From Alaska & Michigan: call collect 313/761-4700. From Canada: 800/343-5299. 17

A symptom management program for psychotically ill adolescents and their families: preliminary clinical outcomes.

The author describes the preliminary results of a clinical pilot study of a symptom management program for adolescents who are recovering from a nondr...
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