International Journal of Psychiatry in Clinical Practice, 2007; 11(1): 9 15
ORIGINAL ARTICLE
A program for parents of teens with anorexia nervosa and eating disorder not otherwise specified
PAMELA CARLTON1 & RENEE PYLE2 1
Division of Adolescent Medicine, Stanford University, Mountain View, CA, USA, and 2The Children’s Health Council, Palo Alto, CA, USA
Abstract Objective. This study investigates the effects of a multidisciplinary education and support program for parents of adolescents with anorexia nervosa. Methods. This was a case-control study with 29 prospective cases and 53 retrospective controls. Parents of 10 17-year-old patients hospitalized due to medical complications of their eating disorders were invited to participate. These parents were offered a multidisciplinary education and support program. At the termination of the hospitalization, parents completed a survey examining their: knowledge about the treatment course of eating disorders, inclusion in their child’s care and preparedness to care for their child at home. Results. Using two-tailed t -tests, results indicate that study parents felt: more knowledgeable about the treatment course for eating disorders (p B/0.001), less excluded from their child’s care (p /0.001), more prepared to take their child home (p B/0.001), and that they had a better idea of what to feed their child at home (p B/0.001). Conclusion. These results suggest that providing multidisciplinary education and support to parents of hospitalized adolescents with eating disorders helps to improve their feelings of inclusion in and knowledge about the treatment course, and increases their perceived ability to care for and re-nourish their child upon discharge.
Key Words: Eating disorder, parent support, inpatient, multidisciplinary, adolescent
Introduction Anorexia nervosa (AN) is reaching epidemic proportions in the United States. A study examining the incidence of AN from 1935 to 1989 found that it has been increasing continuously in females 15 24 years of age [1,2]. With 2,000,000 adolescents and young adults affected, AN is the third most common chronic condition among adolescent girls, behind obesity and asthma [3,4]. Once considered a disease of white, affluent women, AN now crosses all racial, socioeconomic, and gender lines [5 7]. Ten percent of those affected are males and, according to the American Psychiatric Association, AN’s prevalence is similar in Hispanic and Caucasian adolescent girls [8]. AN is potentially fatal, with an overall 10 15% mortality rate, mostly from suicide and cardiac complications [3]. This is the highest mortality rate of any psychiatric illness [3]. Several recent studies have shown that adolescents with AN often do well when treated with a familybased approach, in which parents are considered integral members of their child’s treatment team and work closely with their child at home, helping to
re-feed them [9,10]. Although this is a promising model, its success depends on the motivation and ability of parents to fulfill this role [9]. Re-feeding a child with an eating disorder is extremely challenging. While most parents have the best intentions, focus groups conducted with parents of our patients suggested that they are often not adequately prepared for the associated complexities. Owing to the importance of the parent’s role in the treatment of AN, some centers now employ parent education and support groups as an integral part of their treatment program. Some studies suggest that these groups may increase the parents’ knowledge about AN and decrease the rate of unplanned termination of treatment; however, few studies have systematically investigated parental outcomes within a multidisciplinary support program [11,12]. This current report evaluates the effects of a multidisciplinary education and emotional support program for parents of adolescents with AN and EDNOS in a medical inpatient program. It examines the program’s impact on parents’ ratings of inclusion in their child’s care, readiness for discharge, and
Correspondence: Pamela Carlton, M.D., Stanford University, Division of Adolescent Medicine, 1174 Castro Street, Suite 250, Mountain View, CA 94040, USA. Tel: /1 650 694 0660. Fax: /1 650 694 0610. E-mail: [email protected]
(Received 22 August 2005; accepted 4 May 2006) ISSN 1365-1501 print/ISSN 1471-1788 online # 2007 Taylor & Francis DOI: 10.1080/13651500600810968
10
P. Carlton & R. Pyle
knowledge about the treatment course of eating disorders.
Methods The program Our unit is a medical unit with substantial psychiatric involvement located in a pediatric hospital. We currently see about 80 new patients with active eating disorders per year. These patients are predominantly Caucasian, with approximately 30% being Asian or Hispanic. Approximately 85 90% are female. The program has been in operation for approximately 28 years and operates in a universitybased medical center. Evaluation of need In December 2001, an independent moderator conducted two focus groups, with 10 participants each, to determine if there was a perceived need for a parent education and support program to supplement the family-based eating disorder treatment. The participants were parents of patients who were initially admitted to our medical inpatient service the previous year. These focus groups explored the parents’ understanding of the treatment process, their preparedness for, and comfort with, their child’s discharge and subsequent care, and their level of interest in an education and support program. Many of the parents felt that they did not fully understand their child’s treatment. Although they understood that they had the critical responsibility of re-feeding their child upon discharge, most of them felt ill prepared to take on this responsibility. As a result many of the parents stated that they would have liked an educational group while their child was hospitalized. All of the parents reported a desire for a support group. Intervention Based on the results of the focus groups, we developed the ‘‘Parent Education and Support Program’’ (PESP). This program provided parents with psychiatric, nutritional and medical education as well as emotional support. It consisted of three components: 1. A text ‘‘Understanding Eating Disorders: a guide for parents’’. a. This text was given to all parents of adolescents during their initial admission to our inpatient medical stabilization eating disorder unit. b. It covered the medical, nutritional and psychiatric risks of eating disorders as well as methods of treatment. Both general and unit specific information was presented.
2. A weekly parent support group. a. This group, lead by a psychologist, was open to the parents of the inpatients and outpatients in our eating disorder program. It was designed to be a safe place for parents to express their anxiety, fear and concerns about parenting a child or adolescent with an eating disorder. The average weekly attendance of this group was three parents (the range was 15). Approximately two-thirds of the attendees were mothers and one-third were fathers. 3. A weekly medical question and answer session. a. This session was a forum for parents to meet with an adolescent medicine physician and ask any questions they had about our program or the medical aspects of eating disorders in general. Although these were freeform rather than didactic sessions, topics such as the medical risks of eating disorders, what the different eating disorder diagnoses mean, the medical treatment of eating disorders and how to assemble the most effective home treatment team were regularly discussed. The average weekly attendance of this group was three parents (the range was 2 7). Approximately half of the attendees were mothers and half were fathers. In December 2002, prior to the implementation of the PESP, three major improvements were made to the inpatient program as a direct result of our focus group data. After this time, all parents participated in: 1. A detailed admission meeting explaining their child’s medical condition and medical treatment. 2. At least three family meals (where the parents and child have meal together with staff supervision and teaching) prior to discharge. 3. A detailed discharge meeting delineating a home treatment plan, including a meal plan and a medical and psychiatric follow-up plan. Design In January 2003, funding was obtained to implement and evaluate the PESP. A psychologist was recruited to run the support group and a five-page questionnaire was developed to use as an evaluation tool to evaluate parents’ knowledge about eating disorders, their comfort with their involvement level in their child’s medical inpatient care and their preparedness to take their child home (Figure 1). This evaluation tool was developed based on the deficiencies revealed in the focus groups. It was rated on a sevenpoint Likert scale where 0 /strongly disagree and 6 /strongly agree. The PESP was launched on 15
A program for parents of teens with eating disorders July 2003. A case control study was conducted with prospective cases and retrospective controls. We used retrospective controls because we did not want to deny a group of parents access to the program. Even though the program’s effectiveness had not been formally evaluated, the strong desire for this type of information and support that parents had expressed in the focus groups, led us to decide that we needed to offer the program to all of our patients’ parents. Assessment Subjects for this study included parents of all adolescent patients with AN or EDNOS, who had their initial presentation to the Lucile Packard Children’s Hospital at Stanford’s inpatient adolescent medicine service located at El Camino Hospital, between 15 July 2003 and 15 January 2004. We included patients with the diagnosis of EDNOS in the study because many adolescents, especially younger adolescents, are unable to meet all of the strict DSM diagnostic criteria for AN [13]. For the purpose of this study, EDNOS is solely defined as EDNOS with anorexic features and no binging or purging behaviors. Only parents who were native English speakers were included in the study, as all of the groups were conducted in English. Subjects were offered all of the components of the PESP, but their participation was not required. They were required to complete the questionnaire upon their child’s discharge from the hospital. 89% of the patients were female with an average age of approximately 14.2 years (Table I). The ethnic, gender and diagnostic variables for this study match the demographics of the unit as a whole. Our comparison group consisted of parents whose children had been diagnosed with AN or EDNOS during their first admission to our unit between June 2001 and June 2002. The same evaluation tool was administered to the controls as to the subjects. Data analysis The distributions of all the demographic and outcome variables were checked for outliers, normality, and errors. All errors that were detected were Table I. Sample demographics. Variable Number Gender Females Males Diagnosis AN EDNOS Age (Mean) years
Controls
Subjects
53
29
92.5% 7.5%
82.8% 17.2%
67.9% 32.1% 14.4
41.4% 58.6% 14.0
Total 82 89% 11% 58.5% 41.5% 14.2
11
checked with the raw data and corrected. Descriptive analyses were run on all variables. A series of chisquared analyses were then conducted to determine if groups differed by gender or diagnosis. Outcomes comparisons were made using two-tailed Student’s t -testing. Results Twenty-nine subjects were enrolled in the PESP. Eighty-eight questionnaires were sent via mail to potential controls and 53 were returned (60%). A response of 50 60% is considered an acceptable return rate for survey research [14]. Results of the comparative analysis indicate that parents who were offered the education and support program felt significantly more educated about the treatment course for eating disorders (M /5.31, SD /1.37) than did parents without this support (M /3.37, SD /2.23), t (79) / /4.26, p B/0.001. Parents offered the program also felt significantly less excluded from their child’s care (M /2.52, SD /2.08) than did parents without the program (M /4.13, SD /2.05), t (80) /3.39, p /0.001. Additionally, parents who were invited to participate in the education and support program felt significantly more prepared to take their child home (M /4.46, SD /1.53) than parents without this support (M /2.13, SD /2.09), t (78) / /5.20, p B/0.001. Finally, parents who were invited to participate in the program felt that they had a significantly better idea of what to feed their child at home (M /4.68, SD /1.57) than those who did not have the education or support (M /2.77, SD /2.02), t (78) / /4.35, p B/0.001. Discussion This study suggests that providing multidisciplinary education and support to parents of children and adolescents with AN or EDNOS with anorexic features helps parents feel more included in their child’s treatment, more knowledgeable about the treatment course, and more prepared to re-nourish their child upon discharge. As more centers begin to use a family-based approach in the treatment of children and adolescents with AN and EDNOS, a program such as the PESP may prove to be an important adjunct to medical and psychiatric treatment. These data support the need for future research exploring the extension of these findings to an outpatient setting as well as to a decrease in the morbidity and mortality of these devastating diseases. This will hopefully provide support for the development and funding of more educational and support resources for parents who are helping their child battle an eating disorder. Considering the increase in the number of children and adolescents struggling with eating
12
P. Carlton & R. Pyle
Figure 1. Evaluation tool.
A program for parents of teens with eating disorders
13
Figure 1. Continued
disorders, it is surprising how little research has been done on outcomes of multidisciplinary, family-based treatment programs [1,2]. While it is clear from the literature that these youths and their families experience tremendous challenges in their efforts to overcome their eating disorder, little is known about ways to address these challenges. These data suggest that exploring the benefits of providing families of children and adolescents with eating disorders with
education and support should be a continued focus of future research. While the success of education programs for parents of children and adolescents with chronic diseases such as cancer and atopic dermatitis has been reported, there is a paucity of literature exploring the effectiveness of educational programs for parents of children and adolescents with eating disorders [15,16]. Current research on these
14
P. Carlton & R. Pyle
programs is more descriptive than evaluative in nature [17,18]. This study’s major limitation was the use of retrospective controls. Although we obtained strong responses, there are some biases that are inherent to this type of study. Parents in the control group completed the questionnaire a couple years after their child’s discharge from the hospital. Their responses may have been colored by how their child’s recovery had gone. If their child had done poorly, they may have been more critical of the program and felt that they had been ill prepared to care for their child at home. And, as we had only a 60% response rate to the surveys, we do not know if parents whose children were still ill were more or less likely to respond. There was also a difference in disease diagnosis between the two groups. The children of the parents in the control group were mostly diagnosed with AN, while the children of the parents in the experimental group were mostly diagnosed with EDNOS. This may mean that the children whose parents were in the control group were sicker. Therefore, their parents may have felt less prepared to care for them at home. However, many children and young teens with severe eating disorders are diagnosed with EDNOS because they are not physically or cognitively mature enough to meet all of the criteria for AN. Another limitation was a major programmatic change that took place. Parents in the experimental group had family meals with their child prior to discharge and parents in the control group did not. It is possible that the family meals made some difference in the responses. A randomized case control study where the cases and controls are matched for age, gender and diagnosis is needed in order to address the possible biases noted above. Additionally, as the evaluation instrument was investigator-developed, there is no literature support for its psychometric properties at this time. And, owing to the small sample size, results cannot be generalized to all families struggling with an eating disorder. As an increasing number of child and adolescent eating disorder programs worldwide are implementing family-based treatments, preparing parents to be competent members of their child’s treatment team is the next logical step. Even if the family has chosen not to engage in family-based therapy, parents are increasingly being recognized as a critical part of their child’s recovery and therefore, need to be informed, empowered and supported [19]. It is not our goal to simply have parents comply with the treatment team’s recommendations, we intend for them to be able to actively help to manage their child’s illness at home. We believe that programs such as this will empower parents to do that.
Our ultimate goal is to encourage future research in this area and to promote the establishment of programs such as this at other institutions around the country. Key points . Multidisciplinary education and support for parents of children with eating disorders helps parents feel more included in and knowledgeable about the treatment, and more prepared to re-nourish their child at home . More research is necessary on family-based education and support programs as an adjunct to the medical and psychiatric treatment of adolescent eating disorders. Acknowledgements The authors would like to extend our deepest thanks to Iris Litt, M.D., and James Lock, M.D., Ph.D., for their guidance, encouragement and support. Statement of interest The authors have no conflict of interest with any commercial or other associations in connection with the submitted article. References [1] Lucas AR, Beard CM, O’Fallon WM, Kurland LT. 50-year trends in the incidence of anorexia nervosa in Rochester, Minn.: a population-based study. Am J Psychiatry 1991; 148(7):917 22. [2] Lucas AR, Crowson CS, O’Fallon WM, Melton LJ 3rd. The ups and downs of anorexia nervosa. Int J Eat Disord 1999; 26(4):397 405. [3] Walsh JM, Wheat ME, Freund K. Detection, evaluation, and treatment of eating disorders the role of the primary care physician. J Gen Intern Med 2000;15(8):577 90. [4] Herrin M, Matsumoto N. The parent’s guide to childhood eating disorders, 1st ed. New York: Henry Holt; 2002. [5] Fisher M, Golden NH, Katzman DK, Kreipe RE, Rees J, Schebendach J, et al. Eating disorders in adolescents: a background paper. J Adolesc Health 1995;16(6):420 37. [6] Keel PK, Klump KL. Are eating disorders culture-bound syndromes? Implications for conceptualizing their etiology. Psychol Bull 2003;129(5):747 69. [7] Kjelsas E, Bjornstrom C, Gotestam KG. Prevalence of eating disorders in female and male adolescents (14 15 years). Eat Behav 2004;5(1):13 25. [8] Pritts SD, Susman J. Diagnosis of eating disorders in primary care. Am Fam Physician 2003;67(2):297 304. [9] Lock J. Treating adolescents with eating disorders in the family context. Empirical and theoretical considerations. Child Adolesc Psychiatr Clin N Am 2002;11(2):331 42. [10] Lock J, Agras WS, Bryson S, Kraemer HC. A comparison of short- and long-term family therapy for adolescent anorexia nervosa. J Am Acad Child Adolesc Psychiatry 2005;44(7): 632 9. [11] Salette H. [Support for parents with anorexic children]. Can Nurse 1994;90(2):40 4. [12] Tolstrup K, et al. Treatment of anorexia nervosa: Current status. In: Simeon JG, Ferguson HB, editors. Treatment /
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A program for parents of teens with eating disorders strategies in child and adolescent psychiatry. New York: Plenum Press; 1990. p xviii, 233 p. [13] Lock J, Le Grange D. Help your teenager beat an eating disorder. New York: Guilford Press; 2005. [14] Diem K. Maximizing response rate and controlling nonresponse error in survey research: Rutgers Cooperative Research & Extension; 2002. [15] Rudolph LA, Pendergrass TW, Clarke J, Kjosness M, Hartmann JR. Development of an education program for parents of children with cancer. Soc Work Health Care 1981; 6(4):43 54. /
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[16] Wenninger K, Kehrt R, von Ruden U, Lehmann C, Binder C, Wahn U, et al. Structured parent education in the management of childhood atopic dermatitis: the Berlin model. Patient Educ Couns 2000;40(3):253 61. [17] Rose J, Garfinkel PE. A parents’ group in the management of anorexia nervosa. Can J Psychiatry 1980;25(3):228 33. [18] Nicholls Dea. A group for the parents of children with eating disorders. Clin Child Psychol Psychiatry 1997;2:565 78. [19] McMaster R, Beale B, Hillege S, Nagy S. The parent experience of eating disorders: interactions with health professionals. Int J Ment Health Nurs 2004;13(1):67 73. /
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ORIGINAL ARTICLE
A program for parents of teens with anorexia nervosa and eating disorder not otherwise specified
PAMELA CARLTON1 & RENEE PYLE2 1
Division of Adolescent Medicine, Stanford University, Mountain View, CA, USA, and 2The Children’s Health Council, Palo Alto, CA, USA
Abstract Objective. This study investigates the effects of a multidisciplinary education and support program for parents of adolescents with anorexia nervosa. Methods. This was a case-control study with 29 prospective cases and 53 retrospective controls. Parents of 10 17-year-old patients hospitalized due to medical complications of their eating disorders were invited to participate. These parents were offered a multidisciplinary education and support program. At the termination of the hospitalization, parents completed a survey examining their: knowledge about the treatment course of eating disorders, inclusion in their child’s care and preparedness to care for their child at home. Results. Using two-tailed t -tests, results indicate that study parents felt: more knowledgeable about the treatment course for eating disorders (p B/0.001), less excluded from their child’s care (p /0.001), more prepared to take their child home (p B/0.001), and that they had a better idea of what to feed their child at home (p B/0.001). Conclusion. These results suggest that providing multidisciplinary education and support to parents of hospitalized adolescents with eating disorders helps to improve their feelings of inclusion in and knowledge about the treatment course, and increases their perceived ability to care for and re-nourish their child upon discharge.
Key Words: Eating disorder, parent support, inpatient, multidisciplinary, adolescent
Introduction Anorexia nervosa (AN) is reaching epidemic proportions in the United States. A study examining the incidence of AN from 1935 to 1989 found that it has been increasing continuously in females 15 24 years of age [1,2]. With 2,000,000 adolescents and young adults affected, AN is the third most common chronic condition among adolescent girls, behind obesity and asthma [3,4]. Once considered a disease of white, affluent women, AN now crosses all racial, socioeconomic, and gender lines [5 7]. Ten percent of those affected are males and, according to the American Psychiatric Association, AN’s prevalence is similar in Hispanic and Caucasian adolescent girls [8]. AN is potentially fatal, with an overall 10 15% mortality rate, mostly from suicide and cardiac complications [3]. This is the highest mortality rate of any psychiatric illness [3]. Several recent studies have shown that adolescents with AN often do well when treated with a familybased approach, in which parents are considered integral members of their child’s treatment team and work closely with their child at home, helping to
re-feed them [9,10]. Although this is a promising model, its success depends on the motivation and ability of parents to fulfill this role [9]. Re-feeding a child with an eating disorder is extremely challenging. While most parents have the best intentions, focus groups conducted with parents of our patients suggested that they are often not adequately prepared for the associated complexities. Owing to the importance of the parent’s role in the treatment of AN, some centers now employ parent education and support groups as an integral part of their treatment program. Some studies suggest that these groups may increase the parents’ knowledge about AN and decrease the rate of unplanned termination of treatment; however, few studies have systematically investigated parental outcomes within a multidisciplinary support program [11,12]. This current report evaluates the effects of a multidisciplinary education and emotional support program for parents of adolescents with AN and EDNOS in a medical inpatient program. It examines the program’s impact on parents’ ratings of inclusion in their child’s care, readiness for discharge, and
Correspondence: Pamela Carlton, M.D., Stanford University, Division of Adolescent Medicine, 1174 Castro Street, Suite 250, Mountain View, CA 94040, USA. Tel: /1 650 694 0660. Fax: /1 650 694 0610. E-mail: [email protected]
(Received 22 August 2005; accepted 4 May 2006) ISSN 1365-1501 print/ISSN 1471-1788 online # 2007 Taylor & Francis DOI: 10.1080/13651500600810968
10
P. Carlton & R. Pyle
knowledge about the treatment course of eating disorders.
Methods The program Our unit is a medical unit with substantial psychiatric involvement located in a pediatric hospital. We currently see about 80 new patients with active eating disorders per year. These patients are predominantly Caucasian, with approximately 30% being Asian or Hispanic. Approximately 85 90% are female. The program has been in operation for approximately 28 years and operates in a universitybased medical center. Evaluation of need In December 2001, an independent moderator conducted two focus groups, with 10 participants each, to determine if there was a perceived need for a parent education and support program to supplement the family-based eating disorder treatment. The participants were parents of patients who were initially admitted to our medical inpatient service the previous year. These focus groups explored the parents’ understanding of the treatment process, their preparedness for, and comfort with, their child’s discharge and subsequent care, and their level of interest in an education and support program. Many of the parents felt that they did not fully understand their child’s treatment. Although they understood that they had the critical responsibility of re-feeding their child upon discharge, most of them felt ill prepared to take on this responsibility. As a result many of the parents stated that they would have liked an educational group while their child was hospitalized. All of the parents reported a desire for a support group. Intervention Based on the results of the focus groups, we developed the ‘‘Parent Education and Support Program’’ (PESP). This program provided parents with psychiatric, nutritional and medical education as well as emotional support. It consisted of three components: 1. A text ‘‘Understanding Eating Disorders: a guide for parents’’. a. This text was given to all parents of adolescents during their initial admission to our inpatient medical stabilization eating disorder unit. b. It covered the medical, nutritional and psychiatric risks of eating disorders as well as methods of treatment. Both general and unit specific information was presented.
2. A weekly parent support group. a. This group, lead by a psychologist, was open to the parents of the inpatients and outpatients in our eating disorder program. It was designed to be a safe place for parents to express their anxiety, fear and concerns about parenting a child or adolescent with an eating disorder. The average weekly attendance of this group was three parents (the range was 15). Approximately two-thirds of the attendees were mothers and one-third were fathers. 3. A weekly medical question and answer session. a. This session was a forum for parents to meet with an adolescent medicine physician and ask any questions they had about our program or the medical aspects of eating disorders in general. Although these were freeform rather than didactic sessions, topics such as the medical risks of eating disorders, what the different eating disorder diagnoses mean, the medical treatment of eating disorders and how to assemble the most effective home treatment team were regularly discussed. The average weekly attendance of this group was three parents (the range was 2 7). Approximately half of the attendees were mothers and half were fathers. In December 2002, prior to the implementation of the PESP, three major improvements were made to the inpatient program as a direct result of our focus group data. After this time, all parents participated in: 1. A detailed admission meeting explaining their child’s medical condition and medical treatment. 2. At least three family meals (where the parents and child have meal together with staff supervision and teaching) prior to discharge. 3. A detailed discharge meeting delineating a home treatment plan, including a meal plan and a medical and psychiatric follow-up plan. Design In January 2003, funding was obtained to implement and evaluate the PESP. A psychologist was recruited to run the support group and a five-page questionnaire was developed to use as an evaluation tool to evaluate parents’ knowledge about eating disorders, their comfort with their involvement level in their child’s medical inpatient care and their preparedness to take their child home (Figure 1). This evaluation tool was developed based on the deficiencies revealed in the focus groups. It was rated on a sevenpoint Likert scale where 0 /strongly disagree and 6 /strongly agree. The PESP was launched on 15
A program for parents of teens with eating disorders July 2003. A case control study was conducted with prospective cases and retrospective controls. We used retrospective controls because we did not want to deny a group of parents access to the program. Even though the program’s effectiveness had not been formally evaluated, the strong desire for this type of information and support that parents had expressed in the focus groups, led us to decide that we needed to offer the program to all of our patients’ parents. Assessment Subjects for this study included parents of all adolescent patients with AN or EDNOS, who had their initial presentation to the Lucile Packard Children’s Hospital at Stanford’s inpatient adolescent medicine service located at El Camino Hospital, between 15 July 2003 and 15 January 2004. We included patients with the diagnosis of EDNOS in the study because many adolescents, especially younger adolescents, are unable to meet all of the strict DSM diagnostic criteria for AN [13]. For the purpose of this study, EDNOS is solely defined as EDNOS with anorexic features and no binging or purging behaviors. Only parents who were native English speakers were included in the study, as all of the groups were conducted in English. Subjects were offered all of the components of the PESP, but their participation was not required. They were required to complete the questionnaire upon their child’s discharge from the hospital. 89% of the patients were female with an average age of approximately 14.2 years (Table I). The ethnic, gender and diagnostic variables for this study match the demographics of the unit as a whole. Our comparison group consisted of parents whose children had been diagnosed with AN or EDNOS during their first admission to our unit between June 2001 and June 2002. The same evaluation tool was administered to the controls as to the subjects. Data analysis The distributions of all the demographic and outcome variables were checked for outliers, normality, and errors. All errors that were detected were Table I. Sample demographics. Variable Number Gender Females Males Diagnosis AN EDNOS Age (Mean) years
Controls
Subjects
53
29
92.5% 7.5%
82.8% 17.2%
67.9% 32.1% 14.4
41.4% 58.6% 14.0
Total 82 89% 11% 58.5% 41.5% 14.2
11
checked with the raw data and corrected. Descriptive analyses were run on all variables. A series of chisquared analyses were then conducted to determine if groups differed by gender or diagnosis. Outcomes comparisons were made using two-tailed Student’s t -testing. Results Twenty-nine subjects were enrolled in the PESP. Eighty-eight questionnaires were sent via mail to potential controls and 53 were returned (60%). A response of 50 60% is considered an acceptable return rate for survey research [14]. Results of the comparative analysis indicate that parents who were offered the education and support program felt significantly more educated about the treatment course for eating disorders (M /5.31, SD /1.37) than did parents without this support (M /3.37, SD /2.23), t (79) / /4.26, p B/0.001. Parents offered the program also felt significantly less excluded from their child’s care (M /2.52, SD /2.08) than did parents without the program (M /4.13, SD /2.05), t (80) /3.39, p /0.001. Additionally, parents who were invited to participate in the education and support program felt significantly more prepared to take their child home (M /4.46, SD /1.53) than parents without this support (M /2.13, SD /2.09), t (78) / /5.20, p B/0.001. Finally, parents who were invited to participate in the program felt that they had a significantly better idea of what to feed their child at home (M /4.68, SD /1.57) than those who did not have the education or support (M /2.77, SD /2.02), t (78) / /4.35, p B/0.001. Discussion This study suggests that providing multidisciplinary education and support to parents of children and adolescents with AN or EDNOS with anorexic features helps parents feel more included in their child’s treatment, more knowledgeable about the treatment course, and more prepared to re-nourish their child upon discharge. As more centers begin to use a family-based approach in the treatment of children and adolescents with AN and EDNOS, a program such as the PESP may prove to be an important adjunct to medical and psychiatric treatment. These data support the need for future research exploring the extension of these findings to an outpatient setting as well as to a decrease in the morbidity and mortality of these devastating diseases. This will hopefully provide support for the development and funding of more educational and support resources for parents who are helping their child battle an eating disorder. Considering the increase in the number of children and adolescents struggling with eating
12
P. Carlton & R. Pyle
Figure 1. Evaluation tool.
A program for parents of teens with eating disorders
13
Figure 1. Continued
disorders, it is surprising how little research has been done on outcomes of multidisciplinary, family-based treatment programs [1,2]. While it is clear from the literature that these youths and their families experience tremendous challenges in their efforts to overcome their eating disorder, little is known about ways to address these challenges. These data suggest that exploring the benefits of providing families of children and adolescents with eating disorders with
education and support should be a continued focus of future research. While the success of education programs for parents of children and adolescents with chronic diseases such as cancer and atopic dermatitis has been reported, there is a paucity of literature exploring the effectiveness of educational programs for parents of children and adolescents with eating disorders [15,16]. Current research on these
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programs is more descriptive than evaluative in nature [17,18]. This study’s major limitation was the use of retrospective controls. Although we obtained strong responses, there are some biases that are inherent to this type of study. Parents in the control group completed the questionnaire a couple years after their child’s discharge from the hospital. Their responses may have been colored by how their child’s recovery had gone. If their child had done poorly, they may have been more critical of the program and felt that they had been ill prepared to care for their child at home. And, as we had only a 60% response rate to the surveys, we do not know if parents whose children were still ill were more or less likely to respond. There was also a difference in disease diagnosis between the two groups. The children of the parents in the control group were mostly diagnosed with AN, while the children of the parents in the experimental group were mostly diagnosed with EDNOS. This may mean that the children whose parents were in the control group were sicker. Therefore, their parents may have felt less prepared to care for them at home. However, many children and young teens with severe eating disorders are diagnosed with EDNOS because they are not physically or cognitively mature enough to meet all of the criteria for AN. Another limitation was a major programmatic change that took place. Parents in the experimental group had family meals with their child prior to discharge and parents in the control group did not. It is possible that the family meals made some difference in the responses. A randomized case control study where the cases and controls are matched for age, gender and diagnosis is needed in order to address the possible biases noted above. Additionally, as the evaluation instrument was investigator-developed, there is no literature support for its psychometric properties at this time. And, owing to the small sample size, results cannot be generalized to all families struggling with an eating disorder. As an increasing number of child and adolescent eating disorder programs worldwide are implementing family-based treatments, preparing parents to be competent members of their child’s treatment team is the next logical step. Even if the family has chosen not to engage in family-based therapy, parents are increasingly being recognized as a critical part of their child’s recovery and therefore, need to be informed, empowered and supported [19]. It is not our goal to simply have parents comply with the treatment team’s recommendations, we intend for them to be able to actively help to manage their child’s illness at home. We believe that programs such as this will empower parents to do that.
Our ultimate goal is to encourage future research in this area and to promote the establishment of programs such as this at other institutions around the country. Key points . Multidisciplinary education and support for parents of children with eating disorders helps parents feel more included in and knowledgeable about the treatment, and more prepared to re-nourish their child at home . More research is necessary on family-based education and support programs as an adjunct to the medical and psychiatric treatment of adolescent eating disorders. Acknowledgements The authors would like to extend our deepest thanks to Iris Litt, M.D., and James Lock, M.D., Ph.D., for their guidance, encouragement and support. Statement of interest The authors have no conflict of interest with any commercial or other associations in connection with the submitted article. References [1] Lucas AR, Beard CM, O’Fallon WM, Kurland LT. 50-year trends in the incidence of anorexia nervosa in Rochester, Minn.: a population-based study. Am J Psychiatry 1991; 148(7):917 22. [2] Lucas AR, Crowson CS, O’Fallon WM, Melton LJ 3rd. The ups and downs of anorexia nervosa. Int J Eat Disord 1999; 26(4):397 405. [3] Walsh JM, Wheat ME, Freund K. Detection, evaluation, and treatment of eating disorders the role of the primary care physician. J Gen Intern Med 2000;15(8):577 90. [4] Herrin M, Matsumoto N. The parent’s guide to childhood eating disorders, 1st ed. New York: Henry Holt; 2002. [5] Fisher M, Golden NH, Katzman DK, Kreipe RE, Rees J, Schebendach J, et al. Eating disorders in adolescents: a background paper. J Adolesc Health 1995;16(6):420 37. [6] Keel PK, Klump KL. Are eating disorders culture-bound syndromes? Implications for conceptualizing their etiology. Psychol Bull 2003;129(5):747 69. [7] Kjelsas E, Bjornstrom C, Gotestam KG. Prevalence of eating disorders in female and male adolescents (14 15 years). Eat Behav 2004;5(1):13 25. [8] Pritts SD, Susman J. Diagnosis of eating disorders in primary care. Am Fam Physician 2003;67(2):297 304. [9] Lock J. Treating adolescents with eating disorders in the family context. Empirical and theoretical considerations. Child Adolesc Psychiatr Clin N Am 2002;11(2):331 42. [10] Lock J, Agras WS, Bryson S, Kraemer HC. A comparison of short- and long-term family therapy for adolescent anorexia nervosa. J Am Acad Child Adolesc Psychiatry 2005;44(7): 632 9. [11] Salette H. [Support for parents with anorexic children]. Can Nurse 1994;90(2):40 4. [12] Tolstrup K, et al. Treatment of anorexia nervosa: Current status. In: Simeon JG, Ferguson HB, editors. Treatment /
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A program for parents of teens with eating disorders strategies in child and adolescent psychiatry. New York: Plenum Press; 1990. p xviii, 233 p. [13] Lock J, Le Grange D. Help your teenager beat an eating disorder. New York: Guilford Press; 2005. [14] Diem K. Maximizing response rate and controlling nonresponse error in survey research: Rutgers Cooperative Research & Extension; 2002. [15] Rudolph LA, Pendergrass TW, Clarke J, Kjosness M, Hartmann JR. Development of an education program for parents of children with cancer. Soc Work Health Care 1981; 6(4):43 54. /
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[16] Wenninger K, Kehrt R, von Ruden U, Lehmann C, Binder C, Wahn U, et al. Structured parent education in the management of childhood atopic dermatitis: the Berlin model. Patient Educ Couns 2000;40(3):253 61. [17] Rose J, Garfinkel PE. A parents’ group in the management of anorexia nervosa. Can J Psychiatry 1980;25(3):228 33. [18] Nicholls Dea. A group for the parents of children with eating disorders. Clin Child Psychol Psychiatry 1997;2:565 78. [19] McMaster R, Beale B, Hillege S, Nagy S. The parent experience of eating disorders: interactions with health professionals. Int J Ment Health Nurs 2004;13(1):67 73. /
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