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AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES a
b
Margaret West MSW , Robin McIlvaine MSW & Clifford J. Sells MD
c
a
Clinical Assistant Professor, School of Social Work; and Assistant Director of Social Work, Child Development and Mental Retardation Center, University of Washington, Seattle, WA, 98095 b
Social Worker, Genetics Screening and counseling Service, Texas Department of Mental Health and Mental Retardation, Denton, TX c
Associate Professor of Pediatrics and Director of Clinical Training Unit, Child Development and Mental Retardation Center, University of Washington Published online: 26 Oct 2008.
To cite this article: Margaret West MSW , Robin McIlvaine MSW & Clifford J. Sells MD (1979) AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES, Social Work in Health Care, 4:3, 287-298, DOI: 10.1300/J010v04n03_04 To link to this article: http://dx.doi.org/10.1300/J010v04n03_04
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This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/ page/terms-and-conditions
AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES
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Margaret West, MSW Robin McIlvaine, MSW Clifford J. Sells, MD
A B S T R A C T . This paper describes the planning, implementation, use, and evaluation of a group for parents of children with Williams elfin facies syndrome i n an interdisciplinary health care setting. The group utilized a modified educational approach that resulted in significant gains reported by participants in learning about educational opportunities and rights of the handicapped, terminology and lnbeling of Williams syndrome, and meeting and sharing with other parents. The experience has implications applicable in interdisciplinary health care settings for use ofgroups as an aid in reducing the conflict that may result from the frequent combination of research and service to individuals with specific disabilities.
Children with specific disabilities require specialized services often available only in large complex health care systems. Much energy is expended by parents obtaining services for and information about their disabled children. A group setting can provide a highly supportive atmosphere in which parents can share their feelings and explore alternative methods for use in difficult situations (Robinson & Robinson, 1976). This process may result in increased capacity to provide and obtain appropriate help for their children. This paper Ms. W e s t is Clinical Assistant Professor, School o f Social W o r k . and Assistant Director o f Social Work. Child Development and Mental Retardation Center. University of Washington ( W J - l o ) .Seattle. Washington 98195. Ms. McIlvaine is a social worker, Genetics Screening and Counseling Service, Texas Department o f Mental Health and Mental Itetardation. Dentan. Texas. Dr. Sells is Associate Professor o f Pediatrics and Director n f the Clinical Training Unit. Child Dcvelopmenl and Mental Retardation Center, University o f Washington. This research was partially supported b y Maternal and Child Health Services. Bureau o f Community Health Services. Health Services Administration. Department o f Health. Education and Welfare Project 193. Smiol Work in Health Care. Vol. 1131. Spring 1979 01979 by The IIaworth Press. All righls reserved
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describes one such group in an interdisciplinary health care setting and the findings of participant evaluation. Part of the research, service, and training efforts of an interdisciplinary team composed of a nutritionist, occupational therapist, pediatrician, psychologist, speech pathologist, and social worker at the University of Washington Child Development and Mental Retardation Center was a follow-up study of a group of children with Williams elfin h i e s syndrome undertaken by one of the center's interdisciplinary teams. Williams syndrome is characterized by. a -peculiar pattern of craniofacial abnormalities (elfin facies), pre- and postnatal growth deficiency, mental retardation. variable congenital heart disease (including supravaPvular aortic stenosis), and occasionally infantile hypercalcemia (Bennett,VanderVeer, &Sells,in press; Jones & Smith, 1975). In initial contacts with these families dissatisfaction was expressed about the impact of previous research efforts on them. These dissatisfactions centered on those activities that were conducted primarily for research and training purposes and from which the parents felt no personal benefit. In a number of instances, parents recalled promises of result sharing that were never provided. One experience several parents described was examination of their children by numerous professionals who pointed out facial abnormalities. The parents reported frustration in their inability to see what the professionals were seeing. One mother related, "They kept saying. 'look at his eyes,' and I was looking a t his eyes but couldn't see anything." During the time of initial diagnosis, a number of parents expressed a desire to meet other parents having children who fit this syndrome. The team decided to establish a group for parents after becoming aware of their previous frustrations with clinical services that were combined with research and teaching efforts and their desire to meet other parents with similarly affected children. The literature suggests that service groups for parents of mentally retarded children and children with other specialized disabilities have been widespread and increasing in recent years (Tavormina, 1975). There appears to be agreement that such groups are of positive value to parents, although outcome has most often been based on subjective assessments (Ramsey, 1967; Tavormina, 1975). I t has been suggested that evaluation and treatment planning for children should involve parents early in the process and that dialogue established among professionals and parents can be the most important accomplishment (Gorham, 1975).This kind of communication was found to be improved following parent group experiences (David & Donovan, 1975-1976). ESTABLISHMENT OF THE GROUP An initial survey of parents whose children were diagnosed as having Williams syndrome revealed that in 8 of the 10 fam-
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ilies responding, both parents wished to participate in the group. Most of the parents indicated special interest in two of the three areas suggested a s possible foci for the group: (a) "how-to" issues, including working with schools and with medical systems, explaining the child's strengths and weaknesses to others, planning for the future, making the most of available community resources, and learning methods to enhance the child's present skills; and (b)informational issues, including educational, medical, and psychological aspects of Williams syndrome. Of less interest to parents was the option of parent training described as including parent-child interaction, behavior management, and teaching self-help skills. Based on the parental response to the questionnaires, anticipated outcomes described in the literature, and the desire to include participation of several team members, a modified educational approach was selected allowing time for sharing of experiences and concerns, and didactic presentation. The group leaders hoped this approach would increase the common bonds of parents and provide an opportunity for involvement of interdisciplinary team members with the group meetings as well as follow-upstudy of children with Williams syndrome. The objectives of the group were:
1. Provide opportunities for parents to ask questions of professionals and each other in a supportive atmosphere. 2. Provide information to parents of existing knowledge of Williams syndrome including medical, psychological, motor, and social implications. 3. Increase parental understanding of their role a s advocates in education and medical management of their children's difficulties. 4. Provide parents with opportunities to support each other through sharing experiences and feelings.
PARTICIPANTS The group consisted of 15 parents (8mothers and 7 fathers) representing 9 children with Williams syndrome. The participants had an age range from 27 to 48 years and an educational level ranging from high school to postdoctoral education. The average age of the participants' child with Williams syndrome was 5 years, with a range from 2 to 8 years a t the time of group participation. All except 1 child, who was 4 years old, were enrolled in an educational program a t the outset of the group. By the end of the parent group sessions, this child was enrolled in school. All parents participating in the group on a regular basis lived in the greater metropolitan area where the Child Development and Mental Retardation Center is located. One parent
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living 150 miles from the center attened one meeting. All parents and children had been seen as part of a previous study conducted by pediatric dysmorphoPogists at the University of Washington (Jones & Smith, 19'75) and had received evaluations by an interdisciplinary team (Bennett et al., in press) which included assessments by a clinical psychologist, nutritionist, occupational therapist, pediatrician, speech pathologist, and social worker. These evaluations were intended to provide additional information as to functional levels, adaptive behavior, and physical characteristicg of the children. Results of each child's evaluation were shared with the parents and school personnel. (i.e.. teachers, speech therapists, occupational therapists).
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PARENT CONSULTANT A parent consultant was selected to work with the group leaders in planning the group sessions. I t was decided by the group leaders that by having a parent included in planning and implementing the group participation, increased sensitivity to and inclusion of parental needs could result. This plan was intended to minimize the possibility of negative experiences for parents such as had been reported in previous experiences with professionals. The parent consultant was selected by the ~ O U- Dleaders based on several factors, primarily cowenience and subjective impressions. A number of swecific factors contributed to the selection of the individual chosen for ;his role. These included her close physical proximity and availability to the c h i c setting, her volunteering of assistance at the outset of her child's evaluation, and her personal characteristics of openness, intelligence, and warmth which contributed to ease in working with her. Initially, the parent consultant and group leaders worked together on the written information sent out to parents and the planning of topics and format for group meetings. IIt was hoped that this method would provide a safeguard against creating situations that would odfend or cause frustration for parents and ensure inclusion of parental perspectives. Her name was included with those of the group leaders as a contact person to direct questions to on all letters sent to the parents. The intention of this practice was to provide a contact person who might be easier for parents to approach with questions because of the previously experienced frustration and dissatisfaction with professionals. Selection and use of an indigenous leader requires thoughtful planning. I t is important that this individual be able to fit into a leadership role without losing position as a group member.
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GROUP SESSIONS Group meetings of a 2-hour evening session for 6 consecutive weeks were held in a portion of the lobby of the Child Development and Mental Retardation Center. Large, comfortable chairs were set in a circle for easy communication. The interdisciplinary team social worker and a 2nd-year social work graduate student were the group leaders for all sessions. A modified educational approach was used consisting of informal presentations followed by discussion. This approach seemed to be the most appropriate, based on the interests expressed by the parents in the initial survey and findings of others regarding effectiveness of group organizations (Ramsey. 1967). At each group session one member of the interdisciplinary team, who had previously evaluated the children, presented a topic within his or her specialty. Those participating included the nutritionist, occupational therapist, pediatrician, and psychologist. Presentations included general findings of that discipline in the examinations and testing done with this group of children, additional information regarding Williams syndrome learned from these reports, and plans for future research. A t one session, the psychologist discussed similarities in areas of strength and weakness demonstrated by the children on psychological testing and plans for further testing of the children's learning patterns. At another session, an educational specialist met with the group to discuss the legal rights of handicapped children to obtain an appropriate educational program. Each presentation was followed by discussion that focused on the parents' interests and conerns arising from the presentation. When psychological testing was discussed, concerns were raised regarding what could be done to improve their children's skills in the areas where they were furthest behind their chronological age. During group meetings, the parent consultant initiated questions for the presenting professionals. These questions were often focused on areas where the terminology or content of the presentation seemed unclear. Questions were raised regarding the meaning of "elfin facies" and the means for determining the physical characteristics this referred to. I n regard to psychological testing, questions were asked about the meaning of IQ scores and their relevance for predicting future capacity. The group leaders met with the parent consultant prior to group meetings to assist the consultant in preparation for this role. The consultant's question asking in the group served as a stimulus and model to other parents to raise their questions and concerns. At
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most meetings, the parent consultant was the first to raise a question. However, all parents asked questions during the discussion portion of the group meetings. I t was the subjective impression of the group leaders that use of the parent consultant in this manner was a contributing factor to the ease with which parents asked questions of professionals. Discussion was often a springboard for parents to introduce and share their personal concerns and feelings. For example, following the presentation on legal rights to special education. discussion centered on how to deal with neighbors' questions and responses to the "little yellow special education bus stopping in front of the house." In this session, concern was raised over what to do about "overfriendliness" with strangers. Through group discussions of this area, it became apparent that this presented difficulties for several of the famiEes. This interpersonal sharing was supported by the group leaders. This sharing often gave rise to additional areas of concern that were relevant to other group members. For example, one parent's sharing of personal reactions of their child's response to physical examinations (i. e., fearfulness of physical contact by the physician indicated by questions of death and serious illness) was shared by several other parents and gave rise to concern over knowing what was likely to be included in future examinations and how to prepare the children for these experiences.
FOLLOW-UP Two important ideas emerged from the group &scussions and have since been utilized as a part of the ongoing follow-up of this group of children and their families: 1. Use of thegroup as a forum forpresenting new researchproposals. Parents expressed much concern over being individually contacted by persons interested in research on their children. Hn response to this concern, the leaders suggested that the group could become a forum for presenting future research proposals. This suggestion was well received and has been used since the termination of the initial series of group meetings. Through this plan, several researchers met with the group to outline research hypotheses, proposed involvement of the parents and children, and expected outcome. The resulting dialogue yielded an improved understanding of the relationship between research and practice. All parents who were present at this meeting participated voluntarily in the research proposals presented at the group meetings. 2. Continued opportunity for parent meetings. Parents expressed a desire for continued periodic meetings so they could share and com-
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pare notes on the development of their children, and their experiences in obtaining specialized programs for their children. Group meetings are planned to be continued on a semiannual basis. A similar procedure has been reported by other researchers (Barmettler & Fields, 19751976). After reading available material written on Williams syndrome. some of which was based on medical information gathered about them and their children, a number of group members expressed interest about the available literature on the syndrome. Parents desired literature addressed to the issues concerning themselves and their children rather than literature intended for "scientists" only. In response to this, the parent consultant and the group leaderlauthor of this article have been working on developing an article along these lines for publication, with an emphasis on general information about Williams syndrome and its implications for parents and teachers. EVALUATION OF OUTCOME A posttraining evaluation of group experience was aimed at answering the following questions: (a) Were the parents' needs accurately indentified? (b) Were program objectives consistent with individual objectives? (c) Was the program effective in meeting its stated objectives and parents' needs? and (d)What suggestions did participants have for future groups? Two factors limited the evaluation's design. One factor was the previous experiences of parents about research efforts directed to themselves and their children. Because the major goals of the group were service to the parents, increasing their interest in studies of their children, and enhancing cooperation in ongoing studies, the group evaluation was designed to be as nonimposing as possible and to reflect their opinions as program recipients. Evaluation results, therefore, must be viewed in light of these limitations. EVALUATION DESIGN A questionnaire was mailed to all program participants 2 weeks after the sixth group session. Mothers and fathers were requested to respond separately. The survey was designed to reflect: (a) benefit of specific topics and discussions; (b) self-perceived change in contact with other parents, knowledge of Williams syndrome, and attitudes regarding advocacy in relations with professionals; and (c) general response to the group experience. Benefit to parents of specific topics and discussions was rated on a 7-
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point scale, a s was the kind of knowledge held prior to and following the program. Questions relating to contact, knowledge, and attitude were grouped into "before" and "after" group participation conditions. Responses rekted to contact with other parents were elicited by multiple-choice questions, and general response to the group experience by open-ended questions. Examples of questions are presented in Figure 1.
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Of the 15 questionnaires mailed, 11 were returned (75%). Seven respondents were mothers and four were fathers. Lack of response was not questioned, a s participation in the survey was voPuntary. Q6.
Before t h e g r o u p , h o w m u c h contact d i d y o u have w i t h o t h e r parents of c h i l d r e n w i t h Williams Syndrome? Contact i s defined as communication w i t h another parent, either v e r b a l o r w r i t t e n , w i t h specific r e f e r e n c e to y o u r c h i l d r e n a n d Williams Syndrome. (Please check one)
*. -
No contact a t a l l
=. D. E. B.
Q10.
L i t t l e contact ( u n d e r 2 contacts) Moderate contact (2 to 4 contacts) F r e q u e n t contact Lover 4 contacts) Regular contact (ongoing relationship)
General medical aspects o f Williams Syndrome ( e . g . description, symptoms, treatment, etc
.I C i r c l e one number r e p r e s e n t i n g y o u r
k n o w l e d g e before t h e g r o u p .
No k n o w l e d g e
1
2
3
4 5 6 7 Had m u c h knowledge
Q45. What additional content w o u l d y o u h a v e l i k e d to have i n c l u d e d i n t h e group?
FIGUWE 1. Examples of questionnaire items.
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Responses to knowledge questions were tabulated and analyzed using paired t tests. Those areas with significant positive change (p < .01) from little knowledge to a great deal of knowledge were: 1. Purposes, procedures, and findings of current study on Williams syndrome. 2. Legal rights of their children to an appropriate education, the provisions of state rules and regulations for special education, and the channels through which to obtain appropriate education. 3. The extent to which the child's limitations and skills were similar to those of other children with Williams syndrome. 4. The extent to which having a child with Williams syndrome was similar to the experience of other parents with a child having this syndrome. 5. Alternative techniques used by other parents in working with problems, such as answering questions about their children and discipline techniques.
Questions relating to attitude change regarding advocaoy in working with professionals were not subjected to statistical analysis due to the o~en-endedauestion structure. The respondents reported that they might be more likely to express dissatisfaction about service to professionals and ~ e r s i s until t satisfactorv service was obtained following the group experience than they would have prior to the group. Changes in the amount of contact parents had with each other prior to the group was a s follows: eight (75%) had not prior contact a t all; three (27%) had minimal or less than two contacts. More than half of the respondents felt that they were more likely to have contact with other parents in the future. The most beneficial areas covered in presentations and discussion, a s rated by the respondents, were: educational opportunities and rights of the handicapped, meeting other parents, terminology and labeling of handicapped children, accessibility of professionals within a group context, and sharing of feelings and experiences. Of moderate benefit, the respondents listed the psychological aspects of Williams syndrome, establishing expectations, personal adjustment, problemsolving techniques, and medical aspects of Williams syndrome. The open-ended questions provided valuable insight into the benefits perceived by individual respondents. The most frequently described benefit was the opportunity for open discussion of experiences shared with others in a similar situation. One participant wrote on the evaluaton: "I got a lot of feelings out in the open that any other parent of a normal child wouldn't understand but these parents could and did understand because they had been through similar things them-
-
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selves." This area of benefit points out the isolation felt by parents of the handicapped-an isolation often frustratingly unattended to by the systems though which they must seek help (Gorham, 1975; Matheny & Vernick, 1969; Warfield, 1975).One couple wrote: "Thank you for helping our child go from a baby to a little boy overnight. Going to school has made him a very happy little boy. We are o d y sorry we could not have been able to talk to other parents befoe, talking to them and everybody concerned helped us more than anybody knows." The opportunity to question professionals in a relaxed atmosphere and Rear the questions of other parents was given as a valuable experience. Several parents volunteered information regarding their own personal growth and acceptance of their child's problem. The remarks of one participant are especially descriptive: "I felt the parent group helped me to understand a little more about our child's particular situation. We had very little knowledge about Williams Syndrome and it was a good experience to have a chance to talk freely with parents with the same type of child, even though all the children were of various ages. I got a Pot of feelings out in the open that parents of a normal child wouldn't understand but these parents could and did understand because they have been through similar things themselves." Overall, response to the group was positive. Recommendations included more time for interpersonal sharing, extension of the meetings beyond the 6-week periods, interspersing presentation meetings with parent-ody meetings, several areas of more specific content, and inclusion of the affected children in a t least one meeting.
DISCUSSION The evaluation of this parent group has proved useful to the members of the interdisciplinary team as a means of providing review of the objectives set out for the program, and the means undertaken to accomplish these objectives. The response was generally positive and indicated that parents' needs, for the most part, were accurately defined and addressed. An unexpected outcome was the value of interpersonal sharing and the request that more time be allotted for such sharing. Although implied in the goal of providing parents the opportunity to meet each other and engage in dialogue, this was not presented as the primary aim of the program. Participants' remarks suggested that they had defined this objective as another need. Clearly, parent groups similar to the one conducted in the present study can provide quality service to parents. The group approach has been confirmed by increased willingness of parents to participate in r e search, and it resulted in improved communications between parents and all interdisciplinary team members providing services to these
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families. The parent group also provided an excellent opportunity for team members to obtain direct parent response to their activities. Several parents commented that one aspect of the group they especially liked was "having access to professionals in a setting where there was time and interest in sharing information with them." Future groups are planned a s an ongoing part of the services provided to parents of children with Williams syndrome. Additional groups will examine the possibility of developing a group in which siblings of children with Williams syndrome could come together to share experiences, a s well as obtain more information about their affected brothers and sisters. Perhaps these groups might arise informally through parents who now know each other. The approach and format utilized in this experience is transferable to use with other populations of children with specific and observable disabilities. At present, plans are under way fo; beginning groups for parents of children with other specific disabilities in similar settings - .(i. hard-of-hearing children andchildren with seizure disorders). Based on this experience, there are several areas for change that bear consideration by others conducting similar groups. One factor is alternating educational content sessions with discussion, experiental sharing of the ideas from parents. Such a plan might require an increased number of group sessions and allow a more active role for the parent facilitator, who was effective in facilitating such discussion when time allowed. In general, parental evaluation of the group experience through a written multiple-response format was useful to group leaders and other interdisciplinary team members who presented topics a t group sessions. In evaluating future groups, it would be desirable to collect information regarding knowledge and attitudes of participants in the areas of intended group content a t the first group session rather than retrospectively.
e.,
REFERENCES Barmettler, D., & Fields. G. L. Using the group method to study and treat parents of asthmatic children. Social Work in Health Care. Winter 1975-1976.I(2).167-176. Bennett. F. C.. VanderVeer, B., &Sells. C. J. The Williams elfin facies syndrome: A psychological profile (a new aid in syndrome identification). Pediatrics, in press. David. A. C., & Donovan. E. H. Initiating group process with parents of multihandi capped children. Social Work in Health Care. Winter 1975-1976.1(2). 177-183. Gorham. K.A lost generatiog of parents.Exceptiona1 Chikiren, 1975,41,521-525. Jones. K. L.,& Smith, D. W. The Williams elfin facies syndrome, a new perspective. JournalofPediatrics, 1975.86, 718. Matheny, A. P., Jr., & Vernick, J . Parents of the mentally retarded child: Emotionally overwhelmed or informationally deprived. Journal ofpediatrics, 1969,74,953-959. Ramsey, G.V. Review of group methods with parents of the mentally retarded. Arnerican Journal ofMental Deficiency, 1967. 71,857-863.
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Robinson, N. M., & Robinson. H. B. The mentally retarded child. A psychological approach (2nd ed.). New York: McGraw-Hill. 1976. Tavormina, J. B. Relative effectiveness of behavioral and reflective group counseling with parents of mentally retarded children. Journal of Consulting and Clinical Psychology. 1975,43,22-31. Warfield. G. J. Mothers of retarded children review a parent education program. Exceptional Children. 1975,41.559-562.
SPECIAL COURSE FOR PHYSICIANS A four-day Course for Practicing Physicians will be held June 18, 19, 20, and 21 at The University of Utah Hospital Medical Center. The workshop will emphasize medical management and rehabilitation of alcohol and drug abusers. Lectures, demonstrations and small group discussions will be included. Attendance is limited. Tuition is $200.00. of Category 1 approved credit is ofTwenty-five h o ~ m fered by the American Academy of Family Physicians. As an organization accredited for continuing medical education, the U. of U. College of Medicine and the American Medical Society o n Alcoholism certify that the Special Course for Physicians meets the criteria for 25 hours credit in Category (1) of the Physician's Recognition Award o f the American Medical Association, provided i t is used and completed as designed. For further information, contact James R. Swenson, M.D. P.O. Box 2604, Salt Lake City, Utah 841 10.
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES a
b
Margaret West MSW , Robin McIlvaine MSW & Clifford J. Sells MD
c
a
Clinical Assistant Professor, School of Social Work; and Assistant Director of Social Work, Child Development and Mental Retardation Center, University of Washington, Seattle, WA, 98095 b
Social Worker, Genetics Screening and counseling Service, Texas Department of Mental Health and Mental Retardation, Denton, TX c
Associate Professor of Pediatrics and Director of Clinical Training Unit, Child Development and Mental Retardation Center, University of Washington Published online: 26 Oct 2008.
To cite this article: Margaret West MSW , Robin McIlvaine MSW & Clifford J. Sells MD (1979) AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES, Social Work in Health Care, 4:3, 287-298, DOI: 10.1300/J010v04n03_04 To link to this article: http://dx.doi.org/10.1300/J010v04n03_04
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content.
Downloaded by [New York University] at 22:23 11 April 2015
This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/ page/terms-and-conditions
AN INTERDISCIPLINARY HEALTH CARE SETTING'S EXPERIENCE WITH GROUPS FOR PARENTS OF CHILDREN HAVING SPECIFIC DISABILITIES
Downloaded by [New York University] at 22:23 11 April 2015
Margaret West, MSW Robin McIlvaine, MSW Clifford J. Sells, MD
A B S T R A C T . This paper describes the planning, implementation, use, and evaluation of a group for parents of children with Williams elfin facies syndrome i n an interdisciplinary health care setting. The group utilized a modified educational approach that resulted in significant gains reported by participants in learning about educational opportunities and rights of the handicapped, terminology and lnbeling of Williams syndrome, and meeting and sharing with other parents. The experience has implications applicable in interdisciplinary health care settings for use ofgroups as an aid in reducing the conflict that may result from the frequent combination of research and service to individuals with specific disabilities.
Children with specific disabilities require specialized services often available only in large complex health care systems. Much energy is expended by parents obtaining services for and information about their disabled children. A group setting can provide a highly supportive atmosphere in which parents can share their feelings and explore alternative methods for use in difficult situations (Robinson & Robinson, 1976). This process may result in increased capacity to provide and obtain appropriate help for their children. This paper Ms. W e s t is Clinical Assistant Professor, School o f Social W o r k . and Assistant Director o f Social Work. Child Development and Mental Retardation Center. University of Washington ( W J - l o ) .Seattle. Washington 98195. Ms. McIlvaine is a social worker, Genetics Screening and Counseling Service, Texas Department o f Mental Health and Mental Itetardation. Dentan. Texas. Dr. Sells is Associate Professor o f Pediatrics and Director n f the Clinical Training Unit. Child Dcvelopmenl and Mental Retardation Center, University o f Washington. This research was partially supported b y Maternal and Child Health Services. Bureau o f Community Health Services. Health Services Administration. Department o f Health. Education and Welfare Project 193. Smiol Work in Health Care. Vol. 1131. Spring 1979 01979 by The IIaworth Press. All righls reserved
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describes one such group in an interdisciplinary health care setting and the findings of participant evaluation. Part of the research, service, and training efforts of an interdisciplinary team composed of a nutritionist, occupational therapist, pediatrician, psychologist, speech pathologist, and social worker at the University of Washington Child Development and Mental Retardation Center was a follow-up study of a group of children with Williams elfin h i e s syndrome undertaken by one of the center's interdisciplinary teams. Williams syndrome is characterized by. a -peculiar pattern of craniofacial abnormalities (elfin facies), pre- and postnatal growth deficiency, mental retardation. variable congenital heart disease (including supravaPvular aortic stenosis), and occasionally infantile hypercalcemia (Bennett,VanderVeer, &Sells,in press; Jones & Smith, 1975). In initial contacts with these families dissatisfaction was expressed about the impact of previous research efforts on them. These dissatisfactions centered on those activities that were conducted primarily for research and training purposes and from which the parents felt no personal benefit. In a number of instances, parents recalled promises of result sharing that were never provided. One experience several parents described was examination of their children by numerous professionals who pointed out facial abnormalities. The parents reported frustration in their inability to see what the professionals were seeing. One mother related, "They kept saying. 'look at his eyes,' and I was looking a t his eyes but couldn't see anything." During the time of initial diagnosis, a number of parents expressed a desire to meet other parents having children who fit this syndrome. The team decided to establish a group for parents after becoming aware of their previous frustrations with clinical services that were combined with research and teaching efforts and their desire to meet other parents with similarly affected children. The literature suggests that service groups for parents of mentally retarded children and children with other specialized disabilities have been widespread and increasing in recent years (Tavormina, 1975). There appears to be agreement that such groups are of positive value to parents, although outcome has most often been based on subjective assessments (Ramsey, 1967; Tavormina, 1975). I t has been suggested that evaluation and treatment planning for children should involve parents early in the process and that dialogue established among professionals and parents can be the most important accomplishment (Gorham, 1975).This kind of communication was found to be improved following parent group experiences (David & Donovan, 1975-1976). ESTABLISHMENT OF THE GROUP An initial survey of parents whose children were diagnosed as having Williams syndrome revealed that in 8 of the 10 fam-
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ilies responding, both parents wished to participate in the group. Most of the parents indicated special interest in two of the three areas suggested a s possible foci for the group: (a) "how-to" issues, including working with schools and with medical systems, explaining the child's strengths and weaknesses to others, planning for the future, making the most of available community resources, and learning methods to enhance the child's present skills; and (b)informational issues, including educational, medical, and psychological aspects of Williams syndrome. Of less interest to parents was the option of parent training described as including parent-child interaction, behavior management, and teaching self-help skills. Based on the parental response to the questionnaires, anticipated outcomes described in the literature, and the desire to include participation of several team members, a modified educational approach was selected allowing time for sharing of experiences and concerns, and didactic presentation. The group leaders hoped this approach would increase the common bonds of parents and provide an opportunity for involvement of interdisciplinary team members with the group meetings as well as follow-upstudy of children with Williams syndrome. The objectives of the group were:
1. Provide opportunities for parents to ask questions of professionals and each other in a supportive atmosphere. 2. Provide information to parents of existing knowledge of Williams syndrome including medical, psychological, motor, and social implications. 3. Increase parental understanding of their role a s advocates in education and medical management of their children's difficulties. 4. Provide parents with opportunities to support each other through sharing experiences and feelings.
PARTICIPANTS The group consisted of 15 parents (8mothers and 7 fathers) representing 9 children with Williams syndrome. The participants had an age range from 27 to 48 years and an educational level ranging from high school to postdoctoral education. The average age of the participants' child with Williams syndrome was 5 years, with a range from 2 to 8 years a t the time of group participation. All except 1 child, who was 4 years old, were enrolled in an educational program a t the outset of the group. By the end of the parent group sessions, this child was enrolled in school. All parents participating in the group on a regular basis lived in the greater metropolitan area where the Child Development and Mental Retardation Center is located. One parent
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living 150 miles from the center attened one meeting. All parents and children had been seen as part of a previous study conducted by pediatric dysmorphoPogists at the University of Washington (Jones & Smith, 19'75) and had received evaluations by an interdisciplinary team (Bennett et al., in press) which included assessments by a clinical psychologist, nutritionist, occupational therapist, pediatrician, speech pathologist, and social worker. These evaluations were intended to provide additional information as to functional levels, adaptive behavior, and physical characteristicg of the children. Results of each child's evaluation were shared with the parents and school personnel. (i.e.. teachers, speech therapists, occupational therapists).
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PARENT CONSULTANT A parent consultant was selected to work with the group leaders in planning the group sessions. I t was decided by the group leaders that by having a parent included in planning and implementing the group participation, increased sensitivity to and inclusion of parental needs could result. This plan was intended to minimize the possibility of negative experiences for parents such as had been reported in previous experiences with professionals. The parent consultant was selected by the ~ O U- Dleaders based on several factors, primarily cowenience and subjective impressions. A number of swecific factors contributed to the selection of the individual chosen for ;his role. These included her close physical proximity and availability to the c h i c setting, her volunteering of assistance at the outset of her child's evaluation, and her personal characteristics of openness, intelligence, and warmth which contributed to ease in working with her. Initially, the parent consultant and group leaders worked together on the written information sent out to parents and the planning of topics and format for group meetings. IIt was hoped that this method would provide a safeguard against creating situations that would odfend or cause frustration for parents and ensure inclusion of parental perspectives. Her name was included with those of the group leaders as a contact person to direct questions to on all letters sent to the parents. The intention of this practice was to provide a contact person who might be easier for parents to approach with questions because of the previously experienced frustration and dissatisfaction with professionals. Selection and use of an indigenous leader requires thoughtful planning. I t is important that this individual be able to fit into a leadership role without losing position as a group member.
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GROUP SESSIONS Group meetings of a 2-hour evening session for 6 consecutive weeks were held in a portion of the lobby of the Child Development and Mental Retardation Center. Large, comfortable chairs were set in a circle for easy communication. The interdisciplinary team social worker and a 2nd-year social work graduate student were the group leaders for all sessions. A modified educational approach was used consisting of informal presentations followed by discussion. This approach seemed to be the most appropriate, based on the interests expressed by the parents in the initial survey and findings of others regarding effectiveness of group organizations (Ramsey. 1967). At each group session one member of the interdisciplinary team, who had previously evaluated the children, presented a topic within his or her specialty. Those participating included the nutritionist, occupational therapist, pediatrician, and psychologist. Presentations included general findings of that discipline in the examinations and testing done with this group of children, additional information regarding Williams syndrome learned from these reports, and plans for future research. A t one session, the psychologist discussed similarities in areas of strength and weakness demonstrated by the children on psychological testing and plans for further testing of the children's learning patterns. At another session, an educational specialist met with the group to discuss the legal rights of handicapped children to obtain an appropriate educational program. Each presentation was followed by discussion that focused on the parents' interests and conerns arising from the presentation. When psychological testing was discussed, concerns were raised regarding what could be done to improve their children's skills in the areas where they were furthest behind their chronological age. During group meetings, the parent consultant initiated questions for the presenting professionals. These questions were often focused on areas where the terminology or content of the presentation seemed unclear. Questions were raised regarding the meaning of "elfin facies" and the means for determining the physical characteristics this referred to. I n regard to psychological testing, questions were asked about the meaning of IQ scores and their relevance for predicting future capacity. The group leaders met with the parent consultant prior to group meetings to assist the consultant in preparation for this role. The consultant's question asking in the group served as a stimulus and model to other parents to raise their questions and concerns. At
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most meetings, the parent consultant was the first to raise a question. However, all parents asked questions during the discussion portion of the group meetings. I t was the subjective impression of the group leaders that use of the parent consultant in this manner was a contributing factor to the ease with which parents asked questions of professionals. Discussion was often a springboard for parents to introduce and share their personal concerns and feelings. For example, following the presentation on legal rights to special education. discussion centered on how to deal with neighbors' questions and responses to the "little yellow special education bus stopping in front of the house." In this session, concern was raised over what to do about "overfriendliness" with strangers. Through group discussions of this area, it became apparent that this presented difficulties for several of the famiEes. This interpersonal sharing was supported by the group leaders. This sharing often gave rise to additional areas of concern that were relevant to other group members. For example, one parent's sharing of personal reactions of their child's response to physical examinations (i. e., fearfulness of physical contact by the physician indicated by questions of death and serious illness) was shared by several other parents and gave rise to concern over knowing what was likely to be included in future examinations and how to prepare the children for these experiences.
FOLLOW-UP Two important ideas emerged from the group &scussions and have since been utilized as a part of the ongoing follow-up of this group of children and their families: 1. Use of thegroup as a forum forpresenting new researchproposals. Parents expressed much concern over being individually contacted by persons interested in research on their children. Hn response to this concern, the leaders suggested that the group could become a forum for presenting future research proposals. This suggestion was well received and has been used since the termination of the initial series of group meetings. Through this plan, several researchers met with the group to outline research hypotheses, proposed involvement of the parents and children, and expected outcome. The resulting dialogue yielded an improved understanding of the relationship between research and practice. All parents who were present at this meeting participated voluntarily in the research proposals presented at the group meetings. 2. Continued opportunity for parent meetings. Parents expressed a desire for continued periodic meetings so they could share and com-
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pare notes on the development of their children, and their experiences in obtaining specialized programs for their children. Group meetings are planned to be continued on a semiannual basis. A similar procedure has been reported by other researchers (Barmettler & Fields, 19751976). After reading available material written on Williams syndrome. some of which was based on medical information gathered about them and their children, a number of group members expressed interest about the available literature on the syndrome. Parents desired literature addressed to the issues concerning themselves and their children rather than literature intended for "scientists" only. In response to this, the parent consultant and the group leaderlauthor of this article have been working on developing an article along these lines for publication, with an emphasis on general information about Williams syndrome and its implications for parents and teachers. EVALUATION OF OUTCOME A posttraining evaluation of group experience was aimed at answering the following questions: (a) Were the parents' needs accurately indentified? (b) Were program objectives consistent with individual objectives? (c) Was the program effective in meeting its stated objectives and parents' needs? and (d)What suggestions did participants have for future groups? Two factors limited the evaluation's design. One factor was the previous experiences of parents about research efforts directed to themselves and their children. Because the major goals of the group were service to the parents, increasing their interest in studies of their children, and enhancing cooperation in ongoing studies, the group evaluation was designed to be as nonimposing as possible and to reflect their opinions as program recipients. Evaluation results, therefore, must be viewed in light of these limitations. EVALUATION DESIGN A questionnaire was mailed to all program participants 2 weeks after the sixth group session. Mothers and fathers were requested to respond separately. The survey was designed to reflect: (a) benefit of specific topics and discussions; (b) self-perceived change in contact with other parents, knowledge of Williams syndrome, and attitudes regarding advocacy in relations with professionals; and (c) general response to the group experience. Benefit to parents of specific topics and discussions was rated on a 7-
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point scale, a s was the kind of knowledge held prior to and following the program. Questions relating to contact, knowledge, and attitude were grouped into "before" and "after" group participation conditions. Responses rekted to contact with other parents were elicited by multiple-choice questions, and general response to the group experience by open-ended questions. Examples of questions are presented in Figure 1.
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Of the 15 questionnaires mailed, 11 were returned (75%). Seven respondents were mothers and four were fathers. Lack of response was not questioned, a s participation in the survey was voPuntary. Q6.
Before t h e g r o u p , h o w m u c h contact d i d y o u have w i t h o t h e r parents of c h i l d r e n w i t h Williams Syndrome? Contact i s defined as communication w i t h another parent, either v e r b a l o r w r i t t e n , w i t h specific r e f e r e n c e to y o u r c h i l d r e n a n d Williams Syndrome. (Please check one)
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No contact a t a l l
=. D. E. B.
Q10.
L i t t l e contact ( u n d e r 2 contacts) Moderate contact (2 to 4 contacts) F r e q u e n t contact Lover 4 contacts) Regular contact (ongoing relationship)
General medical aspects o f Williams Syndrome ( e . g . description, symptoms, treatment, etc
.I C i r c l e one number r e p r e s e n t i n g y o u r
k n o w l e d g e before t h e g r o u p .
No k n o w l e d g e
1
2
3
4 5 6 7 Had m u c h knowledge
Q45. What additional content w o u l d y o u h a v e l i k e d to have i n c l u d e d i n t h e group?
FIGUWE 1. Examples of questionnaire items.
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Responses to knowledge questions were tabulated and analyzed using paired t tests. Those areas with significant positive change (p < .01) from little knowledge to a great deal of knowledge were: 1. Purposes, procedures, and findings of current study on Williams syndrome. 2. Legal rights of their children to an appropriate education, the provisions of state rules and regulations for special education, and the channels through which to obtain appropriate education. 3. The extent to which the child's limitations and skills were similar to those of other children with Williams syndrome. 4. The extent to which having a child with Williams syndrome was similar to the experience of other parents with a child having this syndrome. 5. Alternative techniques used by other parents in working with problems, such as answering questions about their children and discipline techniques.
Questions relating to attitude change regarding advocaoy in working with professionals were not subjected to statistical analysis due to the o~en-endedauestion structure. The respondents reported that they might be more likely to express dissatisfaction about service to professionals and ~ e r s i s until t satisfactorv service was obtained following the group experience than they would have prior to the group. Changes in the amount of contact parents had with each other prior to the group was a s follows: eight (75%) had not prior contact a t all; three (27%) had minimal or less than two contacts. More than half of the respondents felt that they were more likely to have contact with other parents in the future. The most beneficial areas covered in presentations and discussion, a s rated by the respondents, were: educational opportunities and rights of the handicapped, meeting other parents, terminology and labeling of handicapped children, accessibility of professionals within a group context, and sharing of feelings and experiences. Of moderate benefit, the respondents listed the psychological aspects of Williams syndrome, establishing expectations, personal adjustment, problemsolving techniques, and medical aspects of Williams syndrome. The open-ended questions provided valuable insight into the benefits perceived by individual respondents. The most frequently described benefit was the opportunity for open discussion of experiences shared with others in a similar situation. One participant wrote on the evaluaton: "I got a lot of feelings out in the open that any other parent of a normal child wouldn't understand but these parents could and did understand because they had been through similar things them-
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selves." This area of benefit points out the isolation felt by parents of the handicapped-an isolation often frustratingly unattended to by the systems though which they must seek help (Gorham, 1975; Matheny & Vernick, 1969; Warfield, 1975).One couple wrote: "Thank you for helping our child go from a baby to a little boy overnight. Going to school has made him a very happy little boy. We are o d y sorry we could not have been able to talk to other parents befoe, talking to them and everybody concerned helped us more than anybody knows." The opportunity to question professionals in a relaxed atmosphere and Rear the questions of other parents was given as a valuable experience. Several parents volunteered information regarding their own personal growth and acceptance of their child's problem. The remarks of one participant are especially descriptive: "I felt the parent group helped me to understand a little more about our child's particular situation. We had very little knowledge about Williams Syndrome and it was a good experience to have a chance to talk freely with parents with the same type of child, even though all the children were of various ages. I got a Pot of feelings out in the open that parents of a normal child wouldn't understand but these parents could and did understand because they have been through similar things themselves." Overall, response to the group was positive. Recommendations included more time for interpersonal sharing, extension of the meetings beyond the 6-week periods, interspersing presentation meetings with parent-ody meetings, several areas of more specific content, and inclusion of the affected children in a t least one meeting.
DISCUSSION The evaluation of this parent group has proved useful to the members of the interdisciplinary team as a means of providing review of the objectives set out for the program, and the means undertaken to accomplish these objectives. The response was generally positive and indicated that parents' needs, for the most part, were accurately defined and addressed. An unexpected outcome was the value of interpersonal sharing and the request that more time be allotted for such sharing. Although implied in the goal of providing parents the opportunity to meet each other and engage in dialogue, this was not presented as the primary aim of the program. Participants' remarks suggested that they had defined this objective as another need. Clearly, parent groups similar to the one conducted in the present study can provide quality service to parents. The group approach has been confirmed by increased willingness of parents to participate in r e search, and it resulted in improved communications between parents and all interdisciplinary team members providing services to these
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families. The parent group also provided an excellent opportunity for team members to obtain direct parent response to their activities. Several parents commented that one aspect of the group they especially liked was "having access to professionals in a setting where there was time and interest in sharing information with them." Future groups are planned a s an ongoing part of the services provided to parents of children with Williams syndrome. Additional groups will examine the possibility of developing a group in which siblings of children with Williams syndrome could come together to share experiences, a s well as obtain more information about their affected brothers and sisters. Perhaps these groups might arise informally through parents who now know each other. The approach and format utilized in this experience is transferable to use with other populations of children with specific and observable disabilities. At present, plans are under way fo; beginning groups for parents of children with other specific disabilities in similar settings - .(i. hard-of-hearing children andchildren with seizure disorders). Based on this experience, there are several areas for change that bear consideration by others conducting similar groups. One factor is alternating educational content sessions with discussion, experiental sharing of the ideas from parents. Such a plan might require an increased number of group sessions and allow a more active role for the parent facilitator, who was effective in facilitating such discussion when time allowed. In general, parental evaluation of the group experience through a written multiple-response format was useful to group leaders and other interdisciplinary team members who presented topics a t group sessions. In evaluating future groups, it would be desirable to collect information regarding knowledge and attitudes of participants in the areas of intended group content a t the first group session rather than retrospectively.
e.,
REFERENCES Barmettler, D., & Fields. G. L. Using the group method to study and treat parents of asthmatic children. Social Work in Health Care. Winter 1975-1976.I(2).167-176. Bennett. F. C.. VanderVeer, B., &Sells. C. J. The Williams elfin facies syndrome: A psychological profile (a new aid in syndrome identification). Pediatrics, in press. David. A. C., & Donovan. E. H. Initiating group process with parents of multihandi capped children. Social Work in Health Care. Winter 1975-1976.1(2). 177-183. Gorham. K.A lost generatiog of parents.Exceptiona1 Chikiren, 1975,41,521-525. Jones. K. L.,& Smith, D. W. The Williams elfin facies syndrome, a new perspective. JournalofPediatrics, 1975.86, 718. Matheny, A. P., Jr., & Vernick, J . Parents of the mentally retarded child: Emotionally overwhelmed or informationally deprived. Journal ofpediatrics, 1969,74,953-959. Ramsey, G.V. Review of group methods with parents of the mentally retarded. Arnerican Journal ofMental Deficiency, 1967. 71,857-863.
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Robinson, N. M., & Robinson. H. B. The mentally retarded child. A psychological approach (2nd ed.). New York: McGraw-Hill. 1976. Tavormina, J. B. Relative effectiveness of behavioral and reflective group counseling with parents of mentally retarded children. Journal of Consulting and Clinical Psychology. 1975,43,22-31. Warfield. G. J. Mothers of retarded children review a parent education program. Exceptional Children. 1975,41.559-562.
SPECIAL COURSE FOR PHYSICIANS A four-day Course for Practicing Physicians will be held June 18, 19, 20, and 21 at The University of Utah Hospital Medical Center. The workshop will emphasize medical management and rehabilitation of alcohol and drug abusers. Lectures, demonstrations and small group discussions will be included. Attendance is limited. Tuition is $200.00. of Category 1 approved credit is ofTwenty-five h o ~ m fered by the American Academy of Family Physicians. As an organization accredited for continuing medical education, the U. of U. College of Medicine and the American Medical Society o n Alcoholism certify that the Special Course for Physicians meets the criteria for 25 hours credit in Category (1) of the Physician's Recognition Award o f the American Medical Association, provided i t is used and completed as designed. For further information, contact James R. Swenson, M.D. P.O. Box 2604, Salt Lake City, Utah 841 10.
