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Eating Disorders: The Journal of Treatment & Prevention Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uedi20
A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial ab
b
b
Wendy Spettigue , Danijela Maras , Nicole Obeid , Katherine A. c
b
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Henderson , Annick Buchholz , Rebecca Gomez & Mark L. Norris
be
a
Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada b
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
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c
Department of Psychology, Carleton University, Ottawa, Ontario, Canada d
Department of Psychiatry Residency Training Program, University of Ottawa, Ottawa, Ontario, Canada e
Department of Pediatrics, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada Published online: 04 Aug 2014.
To cite this article: Wendy Spettigue, Danijela Maras, Nicole Obeid, Katherine A. Henderson, Annick Buchholz, Rebecca Gomez & Mark L. Norris (2015) A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial, Eating Disorders: The Journal of Treatment & Prevention, 23:1, 60-75, DOI: 10.1080/10640266.2014.940790 To link to this article: http://dx.doi.org/10.1080/10640266.2014.940790
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Eating Disorders, 23:60–75, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1064-0266 print/1532-530X online DOI: 10.1080/10640266.2014.940790
A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial WENDY SPETTIGUE Downloaded by [University of Exeter] at 02:03 11 August 2015
Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa; and Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
DANIJELA MARAS and NICOLE OBEID Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
KATHERINE A. HENDERSON Department of Psychology, Carleton University, Ottawa, Ontario, Canada
ANNICK BUCHHOLZ Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
REBECCA GOMEZ Department of Psychiatry Residency Training Program, University of Ottawa, Ottawa, Ontario, Canada
MARK L. NORRIS Children’s Hospital of Eastern Ontario Research Institute; and Department of Pediatrics, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada
This study evaluated the efficacy of a 2-hour psycho-education session combined with bi-weekly telephone support in increasing parent/caregiver knowledge about eating disorders, increasing self-efficacy by empowering parents to support their child’s recovery, and decreasing the impact of eating disorder symptoms on the family. The intervention was targeted at parents/caregivers whose child was waiting to be assessed for an eating disorder. Participants included 51 parents/caregivers and 36 youths. The brief intervention successfully increased parent/caregiver knowledge of the Address correspondence to Wendy Spettigue, Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, Ontario K1H 8L1, Canada. E-mail: [email protected] Color versions of one or more of the figures in the article can be found online at www. tandfonline.com/uedi. 60
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illness, feelings of self-efficacy, and help-seeking behaviors. These findings are clinically useful as waiting lists are common in Canada.
Eating disorders are chronic and life threatening illnesses associated with serious medical and psychological sequelae (Katzman, 1999; Lask, 2000). Eating disorders can be difficult to treat; about 50% of patients do well over time, approximately 30% improve somewhat but continue to have significant symptoms, and approximately 20% do poorly (Katzman, 1999; Lock & Gowers, 2005). Despite slightly more favorable recovery rates in adolescents, eating disorders have the highest mortality rate of any psychiatric disorder, due to a combination of suicide and medical complications (Lucas, Beard, O’Fallon, & Kurland, 1991; Signorini et al., 2007; Steinhausen, 2009; Sullivan, 1995). The devastating effects eating disorders can have on the health and development of youth, and on their families, underscore the need for effective treatment and prevention. Family-based therapy (FBT) has emerged in the past 15 years as an effective treatment for adolescent anorexia nervosa (AN). FBT has the strongest evidence base for the treatment of restrictive eating disorders in youth, and has shown good to intermediate outcomes in treating AN, with 60% to 90% of adolescents reaching full or partial remission (Eisler et al., 2000; Eisler et al., 1997; Eisler, Simic, Russell, & Dare, 2007; Le Grange, 2005; Le Grange, Eisler, Dare, & Russell, 1992; Lock, 2010; Lock, Agras, Bryson, & Kraemer, 2005; Lock, Le Grange, Forsberg, & Hewell, 2006; Russell, Szmukler, Dare, & Eisler, 1987; Treasure, Claudino, & Zucker, 2010). More recent research suggests that modified FBT may be effective for the treatment of bulimia nervosa (BN) (Lock, Le Grange, & Crosby, 2008; Loeb & Le Grange, 2009). Research on psycho-education groups, including FBT-inspired groups, for parents/caregivers of individuals with an eating disorder have shown some success as an adjunct to treatment by reducing family distress, emotional over-involvement, care giving burden, and carer distress, and by increasing parental self-efficacy, thus improving behaviors related to the eating disorder (Macdonald, Murray, Goddard, & Treasure, 2011; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Uehara, Kawashima, Goto, Tasaki, & Someya, 2001; Zucker, Marcus, & Bulik, 2006). Eating disorder prevention programs have also been studied, but their efficacy is mixed and they are generally not available to families who are on waiting lists for specialized treatment (Berger, Sowa, Bormann, Brix, & Strauss, 2008; Macdonald, Murray, Goddard, & Treasure, 2011; Pratt & Woolfenden, 2009; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Uehara et al., 2001; Zucker et al., 2006). Although prevention programs are important, they are generally school-based, and aim to increase resilience and reduce the prevalence of risk factors, but are not designed to target eating disorder symptoms
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and behaviors once an eating disorder has developed (Jones, Völker, Lock, Taylor, & Jacobi, 2012). Parents of more severely ill youth generally do not find these programs helpful (Jones et al., 2012). Unfortunately, many specialized eating disorder programs in Canada have long waiting lists; severely ill patients are triaged for urgent assessment and medical stabilization, whereas moderately ill patients are more likely to remain on waiting lists for longer periods of time, thus increasing the risk that their health may deteriorate while they await services from teams that are often under-resourced and under-funded. During the study time-frame, the average wait time for an assessment at our center was 96 days (range: 0–181) (including medically stable and unstable patients). Research has shown that early recognition and implementation of treatment is protective in eating disorders and leads to better outcomes (Zipfel, Löwe, Reas, Deter, & Herzog, 2000). To that end, the purpose of the present study was to determine whether a 2-hour psycho-education session combined with brief targeted bi-weekly telephone calls, offered to parents/ caregivers (herein referred to collectively as parents) while they await our services, could improve parents’ knowledge about eating disorders, improve their feelings of self-efficacy as it pertains to helping their child recover, decrease the impact that the youth’s eating disorder symptoms have on the family as a whole, and ultimately, improve the presentation of the suffering youth at the time of formal assessment. It was hypothesized that parents in the intervention group would have increased knowledge and feelings of self-efficacy following the psycho-education session, as well as decreased impact of the eating disorder symptoms on the family. It was further hypothesized that youth whose parent(s) attended the psycho-education session would have reduced eating disorder symptoms at the time of assessment, as compared to the control group.
METHODS Participants All English-speaking parents of medically stable1 youth awaiting services from our specialized eating disorder program at a Canadian children’s hospital between 2009 and 2012, were invited to participate in the study. Forty-seven (92.2%) of the 51 parents were biological mothers, three (5.8%) were biological fathers, and one (2.0%) was an adoptive father. Participant enrollment and flow are depicted in Figure 1. Fifty-one parents out of 188 screened for eligibility enrolled in the study; 27 were randomly assigned to the intervention arm, and 24 to the control arm. Families randomized to the control arm were assured that they would receive the same information as the intervention group at the time of their child’s formal assessment. All parents were told that should their child become medically
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Screened for eligibility (n = 188) Excluded (n = 135) - Did not meet inclusion (n =120) - Refused (n = 9) - Other (n = 6)
Time 1 questionnaires (n = 51)
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Randomized (n = 51)
Control (n = 24) Received control (n = 24)
Intervention (n = 27) Received intervention (n = 25)
Time 2 1-month on waiting list (n = 20)
Time 2 Post-workshop (n = 22)
Time 3 Assessment (Parents: n = 16) (Youth: n = 16)
8 = refused assessment
Time 3 Assessment (Parents: n = 21) (Youth: n = 20)
1 = withdrawn 1 = no show
4 = refused assessment
FIGURE 1 Consort diagram depicting participant enrollment and flow.
unstable while on the wait-list, they would be withdrawn from the research study and seen on an urgent basis. All parents were also advised to continue regular medical monitoring by their primary care provider until the time of their formal assessment at our center (standard practice). Of the 27 intervention group parents, two did not receive the intervention: one because the child became medically unstable while on the wait-list, and another parent did not show up to the scheduled psycho-education session. Thirty-seven out of 49 remaining parent participants received an assessment by our specialized team, and 12 families (eight = control, four = intervention) refused assessment. The average wait time for assessment (from date of consent) was 94 days (range: 27–287). All 37 youth who received an assessment were eligible to participate as well. Thirty-six youth (35 females and one male) with a mean age of 15.66 years (SD = 1.47) agreed to participate.
Intervention (Psycho-Education Session) The intervention was comprised of an initial 2-hour psycho-educational session, followed by bi-weekly telephone calls (up until the time of formal assessment) aimed to provide support to parents using a family-based approach to care. Calls were completed by a senior nurse with extensive
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experience with eating disorder patients. The nurse contacted intervention group families to provide support and advice by answering questions related to the illness and its management, using “Maudsley” principles of empowering parents to externalize the illness and compassionately nourish their child and minimize opportunity for symptoms. As well, families were offered free copies of three recommended books on eating disorders,2 a meal-support DVD (developed by the British Columbia Children’s Hospital), and a list of other recommended resources (i.e., recommended books, articles, websites, and local support groups). The psycho-education session was delivered faceto-face by a psychiatrist (WS) and adolescent health physician (MN) who specialize in the treatment of pediatric eating disorders. Topics addressed included: general information about eating disorders, definition of symptoms, risk factors for developing an eating disorder, and medical and psychiatric complications. The goals of the psycho-education session were inspired by the principles of FBT and were as follows: to educate parents, externalize the illness, increase empathy for the ill child, help parents to see the illness as controlling the child, lift blame from parents, raise their anxiety, and empower them to take charge of their child’s eating and nutritional intake (Le Grange, 2005).
Procedure All parents completed questionnaires before randomization (Time 1). The intervention group completed the same battery of questionnaires after the psycho-education session (Time 2-Intervention), and the control group completed their post questionnaires after being on the wait-list for approximately 1 month (Time 2-Control). Both groups repeated the battery of questionnaires at the time of their child’s comprehensive assessment (Time 3). At assessment, youth whose parents were participating in the trial were invited to participate in the study, and were asked to release information of questionnaires they completed as part of their formal assessment (questionnaire collection was part of standard practice). Age, gender, body mass index (BMI), and diagnosis were also collected at the time of assessment. As a final step, a qualitative follow-up interview was performed with some parents from the intervention group to elicit additional information on the helpfulness of the psycho-education session. This study was approved by the center’s research ethics board, and all participants provided informed consent after receiving a complete description of the study.
Measures Questionnaires assessed parent knowledge, symptom impact, self-efficacy pertaining to the eating disorder, help-seeking behavior, and satisfaction with the psycho-education session.
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PARENT MEASURES Parents Versus Anorexia. The Parents Versus Anorexia (PVA) is a 7-item scale that measures parental efficacy, defined as parents’ perceptions of their ability to adopt a primary role in taking charge of the eating disorder for the purpose of bringing about the recovery of their child (Rhodes, Baillie, Brown, & Madden, 2005). As an example, parents are asked to rate their response to questions such as “I feel equipped with specific practical strategies for the task of bringing about the complete recovery of my child in the home setting.” Parents rate each item on a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Total scores can range from 5 to 35, where higher scores are indicative of greater self-efficacy (Rhodes et al., 2005). The wording of this questionnaire was modified slightly for the purposes of this trial; questions referring to “anorexia nervosa” were substituted with “eating disorder” to make the questions more generalizable to all study participants. Eating Disorders Symptom Impact Scale. The Eating Disorders Symptom Impact Scale (EDSIS) is a 24-item scale that assesses the impact that an individual’s eating disorder symptoms have on family members and family life (Sepulveda et al., 2008). Higher scores are indicative of higher impact of symptoms. Knowledge of Eating Disorders Scale. The Knowledge of Eating Disorders Scale (KEDS) is an 82-item true/false questionnaire assessing general knowledge of eating disorders (Krysanski, Illing, Tasca, Demidenko, & Bissada, 2008). At the time of this study, there was no validated measure of eating disorder knowledge available. The KEDS is currently in development; early findings of the measure lend support for construct validity (Krysanski et al., 2008). Satisfaction Questionnaire. The Satisfaction Questionnaire asks parents to rate the quality and perceived helpfulness of the psycho-education session on a scale from 1 (poor) to 4 (excellent). YOUTH MEASURES Children’s Depression Inventory. The Children’s Depression Inventory (CDI) is a reliable and valid 27-item self-report measure widely used to evaluate symptoms of depression in children and adolescents aged 6 to 17 years (Kovacs, 1992). Age and gender normed total t-scores were used. Multi-Dimensional Anxiety Scale for Children. The Multi-Dimensional Anxiety Scale for Children (MASC) is a reliable and valid 39-item self-report questionnaire that evaluates a wide spectrum of common anxiety symptoms in youth aged 8 to 19 years (March, 1997; March, Parker, Sullivan, Stallings, & Conners, 1997). Age and gender normed total t-scores were used. Eating Disorder Examination Questionnaire-Adolescent. The Eating Disorder Examination Questionnaire-Adolescent (EDEQ-A) is a 36-item
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instrument assessing eating disorder behaviors, attitudes, and feelings (Carter, Stewart, & Fairburn, 2001). The global score was used in this study.
The statistical package for the social sciences (SPSS Inc.) version 21.0 with an alpha level of p < .05 was used for all analyses. A mixed-design analysis of variance (ANOVA) was used to test for differences between the control and intervention groups on repeated measures. Assumptions of the mixeddesign ANOVA were met, i.e., assumption of circularity, homogeneity of variance, and Box’s test of equality of covariance were not violated. Partial eta squared (partial η2 ) was used as a measure of effect size, where 0.01 was used to define a small effect, 0.06 a moderate effect, and 0.14 a large effect. The Student’s t-test was performed to compare the two groups on youth measures. The chi-square test was used to identify group differences in helpseeking behaviors.
RESULTS Parent Outcomes Self-efficacy. Self-efficacy scores across time are depicted in Figure 2, and marginal means are displayed in Table 1. Results of the ANOVA reveal a significant interaction effect between group and self-efficacy across time, Wilks’ Lambda = .58, F(2, 28) = 10.10, p < .001, partial η2 = .419. There was a significant main effect of time, Wilks’ Lambda = .34, F(2, 28) = 27.62, 28 26 Self-efficacy (total score)
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Statistical Analysis
24 22 20
Control (n = 13)
18
Intervention (n = 18)
16 14 12 10
T1
T2
T3
Time
FIGURE 2 Mixed model ANOVA of parent self-efficacy (PVA) total scores across three time points: T1 = baseline; T2 = post-psycho-education session for intervention group, and 1-month post-baseline for control group; T3 = assessment.
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TABLE 1 Marginal Means (M) and Standard Deviations (SD) Across Three Time Points for Control and Intervention Group of Parent Participants PVA M
14.38 15.92 16.46
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M
15.44 21.89 20.00
EDSIS SD
M
n = 11 3.18 3.28 4.10
53.31 57.16 59.48
n = 18
Intervention T1 T2 T3
SD n = 13
Control T1 T2 T3
KEDS
n = 15 13.05 13.62 11.78
30.73 − 28.93
n = 17 3.03 3.38 3.73
57.93 68.30 72.48
SD
7.45 − 14.58 n = 21
17.58 14.91 13.27
36.29 − 36.95
9.29 − 13.14
Note. T1 = baseline, T2 = post-psycho-education session for intervention group, and 1-month postbaseline for control group, T3 = assessment; PVA = Parents Versus Anorexia; KEDS = Knowledge of Eating Disorders; EDSIS = Eating Disorder Symptom Severity Scale; – = not applicable.
p < .001, partial η2 = .664, with both groups showing an increase in selfefficacy across the three time-points (see Table 1). The main effect of group was also significant, F(1, 29) = 10.35, p = .003, partial η2 = .263, suggesting that the two groups differed. Pair-wise comparisons reveal that self-efficacy did not differ between groups at baseline, F(1,29) = .866, p = .354, partial η2 = .030, but the intervention group reported significantly higher feelings of self-efficacy at Time 2, F(1,29) = 24.14, p < .001, partial η2 = .454, and at assessment (Time 3), F(1,29) = 6.27, p = .018, partial η2 = .178. Knowledge. Knowledge scores across time are depicted in Figure 3, and marginal means are displayed in Table 1. Results reveal a significant main effect of knowledge across time, Wilks’ Lambda = .54, F(2,25) = 10.85, p < .001, partial η2 = .465, suggesting that knowledge generally increases across the three measurement points. The main effect of group approached statistical significance, F(1, 26) = 3.49, p = .073, partial η2 = .118, and the interaction effect between group and time was not statistically significant, Wilks’ Lambda = .87, F(2, 25) = 1.83, p = .181, partial η2 = .128. Pair-wise comparisons show that knowledge did not differ between groups at baseline, F(1,26) = .556, p = .463, partial η2 = .021, and only approached statistical significance at Time 2, F(1,26) = 3.98, p = .057, partial η2 = .133, but had a large effect size, suggesting a trend that parents in the intervention group had higher knowledge post-intervention. The intervention group reported significantly more knowledge than the control group at Time 3, F(1,26) = 6.99, p = .014, partial η2 = .212, indicating that parents in the intervention group have higher levels of knowledge of eating disorders at assessment. Symptom impact. Marginal mean scores on the EDSIS are displayed in Table 1. Results do not reveal a significant interaction effect between group
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Self-efficacy (total score)
26 24 22 20
Control (n = 13)
18
Intervention (n = 18)
16 14 12
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10
T1
T2
T3
Time
FIGURE 3 Mixed model ANOVA of parent self-efficacy (PVA) total scores across three time points: T1 = baseline; T2 = post-psycho-education session for intervention group, and 1-month post-baseline for control group; T3 = assessment.
and symptom impact across time (T1 to T3), Wilks’ Lambda = .10 F(1, 32) = .163, p = .689, partial η2 = .005. The main effect of time was not significant, Wilks’ Lambda = .99 F(1, 32) = .331, p = .569, partial η2 = .010, neither was the main effect of group, F(1, 32) = 3.01, p = .093, partial η2 = .086. These results suggest no differences across groups or time in terms of how parents perceive the impact of the eating disorder symptoms. Help-seeking behaviors. Chi-square analyses revealed that significantly more parents in the intervention group accessed literature (i.e. books, websites) to learn about eating disorders while on the waiting list (94.4% versus 60.0%, p = .016). There were no significant group differences in terms of seeking additional mental health services in the community, or seeing a physician while on the waiting list. Satisfaction. Overall, parents in the intervention group were very satisfied with the quality of the workshop (M = 3.91, SD = 0.29), and felt that they received the kind of information they were hoping for (M = 3.59, SD = 0.50). Furthermore, parents found the information very helpful (M = 3.73, SD = 0.46), and would recommend the workshop to other families (M = 3.91, SD = 0.29).
Youth Outcomes Out of 36 consenting youth participants, 55.6% (n = 20) were diagnosed with Eating Disorder Not Otherwise Specified (EDNOS), 22.2% (n = 8) with AN, 11.1% (n = 4) with BN, and 11.1% (n = 4) were not diagnosed with an eating disorder.3 In comparison, out of all patients assessed during the
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TABLE 2 Means (M) and Standard Deviations (SD) of Youth Outcomes Measured at the Time of Formal Assessment Control n = 16 Measure Age (years) BMI (kg/m2 ) CDI total t-score MASC total t-score EDEQ-A total scorea
Intervention n = 20
M
SD
M
SD
t (df = 34)
p-value
15.99 21.61 64.00 57.69 2.77
1.32 3.99 17.12 13.08 1.85
15.39 20.10 69.00 59.35 3.75
1.57 4.09 18.15 13.57 1.64
1.21 1.11 −.842 −.371 −1.64
.235 .277 .406 .713 .111
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Note. BMI = body mass index; CDI = Children’s Depression Inventory; MASC = Multidimensional Anxiety Scale for Children; EDEQ-A = Eating Disorder Examination Questionnaire for Adolescents. a n = 15 for control group and n = 19 for intervention group, and df = 32 for EDEQ-A.
same 2.25-year period, 41.4% were diagnosed with EDNOS, 47.7% with AN, 5.5% with BN, and 4.7% with no eating disorder. Table 2 displays means and standard deviations of youth outcome measures at assessment (Time 3). Independent samples t-tests revealed that youth did not differ at the time of formal assessment in terms of depression, anxiety, eating disorder thoughts and behaviors, and BMI.
Qualitative Component All intervention group parents were invited to participate in a brief telephone interview. The goal of the interview was to gather feedback from parents to understand what they found helpful about the psycho-education session, and if anything changed at home after attending the session. A total of six parents agreed to participate. Most parents mentioned that the information they received made them realize just how ill their child was, and that this was a good thing. Even though some of the information was frightening, because the psycho-education session was delivered face-to-face, parents felt reassured that there were people who could help. Parents also said that attending the psycho-education session made them more aware of the different eating disorder behaviors their child may be displaying, so that they knew what to look for. When asked about what changed after attending the psycho-education session, parents described feeling more empowered, less guilty, less helpless, and less hopeless. Parents appreciated knowing there were things they could do to help their child. In terms of how meal times changed after the psycho-education session, responses varied. For example, one parent said they tried to have more meals as a family, and another parent said meal times deteriorated rapidly because of the severity of the child’s illness at the time. Overall, the six intervention group parents found the psycho-education session helpful.
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The following are a few direct quotations from intervention-group parents who participated in the telephone interview: It was really helpful. I became home more confident in my role as caregiver, really, and helping her with it [the eating disorder]. I felt calmer.
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It was a bit shocking when he [MN] revealed that the heart muscle gets weak, and all the damage that is going on in the body that you can’t see, like the brain shrinking, and bone loss. It was kind of a shock, but I’m glad I received that information. You don’t want to hear it, but you need to hear it. It took some of the guilt away. It empowered me a little bit in the sense that I could make a difference. I could be a key element to helping my daughter get better.
Parents also provided a few suggestions for improvement, including: (a) describing the many different types of eating disorders in more detail because one parent felt their child did not closely resemble a diagnosis of anorexia or bulimia nervosa, (b) providing tips on what to tell the child’s school, (c) suggesting questions and topics to discuss with a general practitioner without specialized experience treating eating disorders, (d) providing situation-specific phrases parents can use with their child, and (e) discussing different medications that may be helpful in the treatment of eating disorders and why they might be recommended.
DISCUSSION This study aimed to evaluate the efficacy of a 2-hour psycho-education session directed at increasing parent knowledge about eating disorders, improving their feelings of self-efficacy in helping their child recover, decreasing the impact of the eating disorder on the family, and improving the presentation of the patient at time of assessment. To our knowledge, this initiative was the first to investigate the effectiveness of delivering a brief, FBT-inspired psycho-education intervention to parents of youth on a waiting list, whose referral had been initiated but who were awaiting assessment and treatment. The psycho-education session was successful at increasing parents’ general knowledge about eating disorders, as well as their feelings of self-efficacy. Research on other illnesses and chronic conditions, such as cancer and diabetes, has shown that parental self-efficacy has positive implications for the child’s treatment and illness management (Harper et al., 2013; Law, Walsh, Queralt, & Nouwen, 2013). It is well-documented in the literature that increasing knowledge and self-efficacy are positively related to improvements in health. It has also been shown that increases in parent
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self-efficacy predict a decrease in adolescent eating disorder symptoms (drive for thinness and body dissatisfaction) while participating in FBT (Robinson, Strahan, Girz, Wilson, & Boachie, 2012). It is expected that self-efficacy would increase while in treatment, but our findings suggest that parent self-efficacy significantly increased after this brief intervention. This has significant clinical implications; if parents are given a brief intervention prior to engaging in treatment, it is possible that outcomes could be positively affected. Furthermore, offering a brief intervention to parents whose children are awaiting services may prevent the child’s deterioration, as well as help families cope while waiting. In terms of eating disorder symptom impact, results do not suggest any group differences across time. This is surprising given that when a small sample of intervention-group parents were interviewed, many parents mentioned being more aware of what eating disorder symptoms looked like, and what behaviors to watch for. One might therefore speculate that the intervention group could be more impacted by their child’s eating disorder symptoms given that they are more conscious of what to look for, but the data do not support this idea. This null finding may be explained by a small sample size and hence low power, or a measurement issue. No differences were evident in patient symptoms between groups at the time of formal assessment. Because youth variables were not assessed at baseline, it is difficult to draw any meaningful conclusions from this comparison. Even though participants were randomized, patients in both groups could have differed at baseline, or maybe the brief intervention was simply not powerful enough to effect any measurable change in patients at the time of presentation for assessment. Finally, it is possible that the intervention was targeted more at individuals with restrictive eating disorders, who make up a larger proportion of the patients treated in our program,4 but that the youth of parents in the study were those not needing an urgent assessment, and thus were more likely to be diagnosed with EDNOS or BN. Our findings are mostly in line with previous research demonstrating the efficacy of psycho-education interventions for parents of individuals suffering from an eating disorder. As an example, a study examining the efficacy of a group parent-training program as an adjunct to outpatient treatment found that parental self-confidence in helping manage their child’s eating disorder increased post-intervention (Zucker et al., 2006). Research on psycho-education groups (including FBT-inspired groups) for parents/ caregivers of individuals with an eating disorder have shown some success as an adjunct to treatment (Macdonald et al., 2011; Robinson et al., 2012; Sepulveda et al., 2008; Uehara et al., 2001; Zucker et al., 2006). Our findings build on previous research by demonstrating that a brief psycho-education session can be helpful to families on a waiting list, even before treatment formally starts. Although important findings emerged from the present study, a number of limitations should be recognized. First is the relatively small sample
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size, which decreased power and made it impossible to look at diagnostically homogenous groups. Therefore, we are not able to discern whether the youth’s symptoms played a role in parent outcome post-intervention or at assessment (e.g., the EDSIS). Another limitation is that youth questionnaires were not administered at baseline, which limits the interpretability of findings. The key strength of the present study is the concept of an intervention for families on a waiting list, who would otherwise not have access to any services, plus the inclusion of a control group. Other strengths include the use of validated questionnaires, as well as objectively measured BMI, and clinician-determined eating disorder diagnosis. Future studies using larger sample sizes should assess youth at baseline, and compare post-treatment outcomes in the two groups to determine whether the addition of a psycho-education session based on FBT principles offered to parents of adolescents on an eating disorder program waiting list provides any added benefit to treatment length or outcome. Overall, results of our study are promising in that they suggest that a single, brief, cost-effective psycho-education session plus some follow-up telephone calls offered to parents awaiting services may help parents manage their child’s illness by increasing parental knowledge and feelings of self-efficacy.
ACKNOWLEDGMENTS The authors would like to thank Meghan McInnis (Queen’s University, Department of Psychology) for taking the time to gather parents’ feedback about the trial. The authors do not have any conflicts of interest to disclose.
FUNDING This work was supported by the Academic Health Science Centers Alternative Funding Plans Innovation Fund, and the Psychiatry and Summer Studentship Funds of the Children’s Hospital of Eastern Ontario Research Institute.
NOTES 1. Patients referred to the eating disorder program were triaged according to the center’s current standard practice, which takes into consideration the patient’s age, body mass index, weight loss, and laboratory and electrocardiogram results. Information was gathered from the referring physician, and medical stability was determined by the registered nurse case coordinator. Patients deemed medically stable were placed on a waiting list for a formal assessment, and parents were advised to continue regular appointments with their child’s primary care provider until the time of assessment. 2. Help Your Teenager Beat an Eating Disorder by James Lock and Daniel Le Grange; Skills-based Learning for Caring for a Loved One with an Eating Disorder by Janet Treasure, Grainne Smith, and
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Anna Crane; Help for Eating Disorders: A Parent’s Guide to Symptoms, Causes, and Treatment by Debra Katzman and Leora Pinhas. 3. The four participants not diagnosed with an eating disorder at assessment had the following diagnoses: selective eating (n = 1), pervasive developmental disorder and suboptimal nutrition (n = 1), weight loss secondary to depression and anxiety (n = 1), and disordered eating and major depressive disorder (n = 1). 4. 51% are diagnosed with a restrictive eating disorder, versus 33% with EDNOS and 11% with BN.
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March, J. S., Parker, J. D. A., Sullivan, K., Stallings, P., & Conners, K. (1997). The Multidimensional Anxiety Scale for Children (MASC): Factor structure, reliability, and validity. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 554–565. Pratt, B., & Woolfenden, S. (2009). Interventions for preventing eating disorders in children and adolescents (Review). The Cochrane Library, 1, 1–39. Rhodes, P., Baillie, A., Brown, J., & Madden, S. (2005). Parental efficacy in the family-based treatment of anorexia: Preliminary development of the Parents Versus Anorexia Scale (PVA). European Eating Disorders Review, 13, 399–405. doi:10.1002/erv.661 Robinson, A. L., Strahan, E., Girz, L., Wilson, A., & Boachie, A. (2012). “I know I can help you”: Parental self-efficacy predicts adolescent outcomes in family-based therapy for eating disorders. European Eating Disorders Review, 21, 108–114. doi:10.1002/erv.2180 Russell, G. F., Szmukler, G. I., Dare, C., & Eisler, I. (1987). An evaluation of family therapy in anorexia nervosa and bulimia nervosa. Archives of General Psychiatry, 44, 1047–1056. Retrieved from http://www.ncbi.nlm.nih. gov/pubmed/3318754 Sepulveda, A. R., Lopez, C., Todd, G., Whitaker, W., & Treasure, J. (2008). An examination of the impact of “the Maudsley eating disorder collaborative care skills workshops” on the well being of carers: A pilot study. Social Psychiatry and Psychiatric Epidemiology, 43, 584–591. doi:10.1007/s00127-008-0336-y Sepulveda, A. R., Whitney, J., Hankins, M., & Treasure, J. (2008). Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders. Health and Quality of Life Outcomes, 6(28). doi:10.1186/1477-7525-6-28 Signorini, A., De Filippo, E., Panico, S., De Caprio, C., Pasanisi, F., & Contaldo, F. (2007). Long-term mortality in anorexia nervosa: A report after an 8-year followup and a review of the most recent literature. European Journal of Cinical Nutrition, 61, 119–122. doi:10.1038/sj.ejcn.1602491 Steinhausen, H.-C. (2009). Outcome of eating disorders. Child and Adolescent Psychiatric Clinics of North America, 18, 225–242. doi:10.1016/j.chc.2008.07.013 Sullivan, P. F. (1995). Mortality in anorexia nervosa. The American Journal of Psychiatry, 152, 1073–1074. Treasure, J., Claudino, A. M., & Zucker, N. (2010). Eating disorders. Lancet, 375, 583–593. doi:10.1016/S0140-6736(09)61748-7 Treasure, J., Smith, G., & Crane, A. (2007). Skills-based learning for caring for a loved one with an eating disorder: The new Maudsley method. London, UK: Routledge. Uehara, T., Kawashima, Y., Goto, M., Tasaki, S. I., & Someya, T. (2001). Psychoeducation for the families of patients with eating disorders and changes in expressed emotion: A preliminary study. Comprehensive Psychiatry, 42, 132–138. doi:10.1053/comp.2001.21215 Zipfel, S., Löwe, B., Reas, D. L., Deter, H., & Herzog, W. (2000). Long-term prognosis in anorexia nervosa: Lessons from a 21-year follow-up study. Lancet, 355, 721–722. Zucker, N. L., Marcus, M., & Bulik, C. (2006). A group parent-training program: A novel approach for eating disorder management. Eating and Weight Disorders, 11, 78–82.
Eating Disorders: The Journal of Treatment & Prevention Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uedi20
A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial ab
b
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Wendy Spettigue , Danijela Maras , Nicole Obeid , Katherine A. c
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d
Henderson , Annick Buchholz , Rebecca Gomez & Mark L. Norris
be
a
Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada b
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
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Department of Psychology, Carleton University, Ottawa, Ontario, Canada d
Department of Psychiatry Residency Training Program, University of Ottawa, Ottawa, Ontario, Canada e
Department of Pediatrics, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada Published online: 04 Aug 2014.
To cite this article: Wendy Spettigue, Danijela Maras, Nicole Obeid, Katherine A. Henderson, Annick Buchholz, Rebecca Gomez & Mark L. Norris (2015) A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial, Eating Disorders: The Journal of Treatment & Prevention, 23:1, 60-75, DOI: 10.1080/10640266.2014.940790 To link to this article: http://dx.doi.org/10.1080/10640266.2014.940790
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Eating Disorders, 23:60–75, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1064-0266 print/1532-530X online DOI: 10.1080/10640266.2014.940790
A Psycho-Education Intervention for Parents of Adolescents With Eating Disorders: A Randomized Controlled Trial WENDY SPETTIGUE Downloaded by [University of Exeter] at 02:03 11 August 2015
Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa; and Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
DANIJELA MARAS and NICOLE OBEID Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
KATHERINE A. HENDERSON Department of Psychology, Carleton University, Ottawa, Ontario, Canada
ANNICK BUCHHOLZ Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
REBECCA GOMEZ Department of Psychiatry Residency Training Program, University of Ottawa, Ottawa, Ontario, Canada
MARK L. NORRIS Children’s Hospital of Eastern Ontario Research Institute; and Department of Pediatrics, Children’s Hospital of Eastern Ontario, University of Ottawa, Ottawa, Ontario, Canada
This study evaluated the efficacy of a 2-hour psycho-education session combined with bi-weekly telephone support in increasing parent/caregiver knowledge about eating disorders, increasing self-efficacy by empowering parents to support their child’s recovery, and decreasing the impact of eating disorder symptoms on the family. The intervention was targeted at parents/caregivers whose child was waiting to be assessed for an eating disorder. Participants included 51 parents/caregivers and 36 youths. The brief intervention successfully increased parent/caregiver knowledge of the Address correspondence to Wendy Spettigue, Department of Psychiatry, Children’s Hospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, Ontario K1H 8L1, Canada. E-mail: [email protected] Color versions of one or more of the figures in the article can be found online at www. tandfonline.com/uedi. 60
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illness, feelings of self-efficacy, and help-seeking behaviors. These findings are clinically useful as waiting lists are common in Canada.
Eating disorders are chronic and life threatening illnesses associated with serious medical and psychological sequelae (Katzman, 1999; Lask, 2000). Eating disorders can be difficult to treat; about 50% of patients do well over time, approximately 30% improve somewhat but continue to have significant symptoms, and approximately 20% do poorly (Katzman, 1999; Lock & Gowers, 2005). Despite slightly more favorable recovery rates in adolescents, eating disorders have the highest mortality rate of any psychiatric disorder, due to a combination of suicide and medical complications (Lucas, Beard, O’Fallon, & Kurland, 1991; Signorini et al., 2007; Steinhausen, 2009; Sullivan, 1995). The devastating effects eating disorders can have on the health and development of youth, and on their families, underscore the need for effective treatment and prevention. Family-based therapy (FBT) has emerged in the past 15 years as an effective treatment for adolescent anorexia nervosa (AN). FBT has the strongest evidence base for the treatment of restrictive eating disorders in youth, and has shown good to intermediate outcomes in treating AN, with 60% to 90% of adolescents reaching full or partial remission (Eisler et al., 2000; Eisler et al., 1997; Eisler, Simic, Russell, & Dare, 2007; Le Grange, 2005; Le Grange, Eisler, Dare, & Russell, 1992; Lock, 2010; Lock, Agras, Bryson, & Kraemer, 2005; Lock, Le Grange, Forsberg, & Hewell, 2006; Russell, Szmukler, Dare, & Eisler, 1987; Treasure, Claudino, & Zucker, 2010). More recent research suggests that modified FBT may be effective for the treatment of bulimia nervosa (BN) (Lock, Le Grange, & Crosby, 2008; Loeb & Le Grange, 2009). Research on psycho-education groups, including FBT-inspired groups, for parents/caregivers of individuals with an eating disorder have shown some success as an adjunct to treatment by reducing family distress, emotional over-involvement, care giving burden, and carer distress, and by increasing parental self-efficacy, thus improving behaviors related to the eating disorder (Macdonald, Murray, Goddard, & Treasure, 2011; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Uehara, Kawashima, Goto, Tasaki, & Someya, 2001; Zucker, Marcus, & Bulik, 2006). Eating disorder prevention programs have also been studied, but their efficacy is mixed and they are generally not available to families who are on waiting lists for specialized treatment (Berger, Sowa, Bormann, Brix, & Strauss, 2008; Macdonald, Murray, Goddard, & Treasure, 2011; Pratt & Woolfenden, 2009; Sepulveda, Lopez, Todd, Whitaker, & Treasure, 2008; Uehara et al., 2001; Zucker et al., 2006). Although prevention programs are important, they are generally school-based, and aim to increase resilience and reduce the prevalence of risk factors, but are not designed to target eating disorder symptoms
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and behaviors once an eating disorder has developed (Jones, Völker, Lock, Taylor, & Jacobi, 2012). Parents of more severely ill youth generally do not find these programs helpful (Jones et al., 2012). Unfortunately, many specialized eating disorder programs in Canada have long waiting lists; severely ill patients are triaged for urgent assessment and medical stabilization, whereas moderately ill patients are more likely to remain on waiting lists for longer periods of time, thus increasing the risk that their health may deteriorate while they await services from teams that are often under-resourced and under-funded. During the study time-frame, the average wait time for an assessment at our center was 96 days (range: 0–181) (including medically stable and unstable patients). Research has shown that early recognition and implementation of treatment is protective in eating disorders and leads to better outcomes (Zipfel, Löwe, Reas, Deter, & Herzog, 2000). To that end, the purpose of the present study was to determine whether a 2-hour psycho-education session combined with brief targeted bi-weekly telephone calls, offered to parents/ caregivers (herein referred to collectively as parents) while they await our services, could improve parents’ knowledge about eating disorders, improve their feelings of self-efficacy as it pertains to helping their child recover, decrease the impact that the youth’s eating disorder symptoms have on the family as a whole, and ultimately, improve the presentation of the suffering youth at the time of formal assessment. It was hypothesized that parents in the intervention group would have increased knowledge and feelings of self-efficacy following the psycho-education session, as well as decreased impact of the eating disorder symptoms on the family. It was further hypothesized that youth whose parent(s) attended the psycho-education session would have reduced eating disorder symptoms at the time of assessment, as compared to the control group.
METHODS Participants All English-speaking parents of medically stable1 youth awaiting services from our specialized eating disorder program at a Canadian children’s hospital between 2009 and 2012, were invited to participate in the study. Forty-seven (92.2%) of the 51 parents were biological mothers, three (5.8%) were biological fathers, and one (2.0%) was an adoptive father. Participant enrollment and flow are depicted in Figure 1. Fifty-one parents out of 188 screened for eligibility enrolled in the study; 27 were randomly assigned to the intervention arm, and 24 to the control arm. Families randomized to the control arm were assured that they would receive the same information as the intervention group at the time of their child’s formal assessment. All parents were told that should their child become medically
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Screened for eligibility (n = 188) Excluded (n = 135) - Did not meet inclusion (n =120) - Refused (n = 9) - Other (n = 6)
Time 1 questionnaires (n = 51)
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Randomized (n = 51)
Control (n = 24) Received control (n = 24)
Intervention (n = 27) Received intervention (n = 25)
Time 2 1-month on waiting list (n = 20)
Time 2 Post-workshop (n = 22)
Time 3 Assessment (Parents: n = 16) (Youth: n = 16)
8 = refused assessment
Time 3 Assessment (Parents: n = 21) (Youth: n = 20)
1 = withdrawn 1 = no show
4 = refused assessment
FIGURE 1 Consort diagram depicting participant enrollment and flow.
unstable while on the wait-list, they would be withdrawn from the research study and seen on an urgent basis. All parents were also advised to continue regular medical monitoring by their primary care provider until the time of their formal assessment at our center (standard practice). Of the 27 intervention group parents, two did not receive the intervention: one because the child became medically unstable while on the wait-list, and another parent did not show up to the scheduled psycho-education session. Thirty-seven out of 49 remaining parent participants received an assessment by our specialized team, and 12 families (eight = control, four = intervention) refused assessment. The average wait time for assessment (from date of consent) was 94 days (range: 27–287). All 37 youth who received an assessment were eligible to participate as well. Thirty-six youth (35 females and one male) with a mean age of 15.66 years (SD = 1.47) agreed to participate.
Intervention (Psycho-Education Session) The intervention was comprised of an initial 2-hour psycho-educational session, followed by bi-weekly telephone calls (up until the time of formal assessment) aimed to provide support to parents using a family-based approach to care. Calls were completed by a senior nurse with extensive
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experience with eating disorder patients. The nurse contacted intervention group families to provide support and advice by answering questions related to the illness and its management, using “Maudsley” principles of empowering parents to externalize the illness and compassionately nourish their child and minimize opportunity for symptoms. As well, families were offered free copies of three recommended books on eating disorders,2 a meal-support DVD (developed by the British Columbia Children’s Hospital), and a list of other recommended resources (i.e., recommended books, articles, websites, and local support groups). The psycho-education session was delivered faceto-face by a psychiatrist (WS) and adolescent health physician (MN) who specialize in the treatment of pediatric eating disorders. Topics addressed included: general information about eating disorders, definition of symptoms, risk factors for developing an eating disorder, and medical and psychiatric complications. The goals of the psycho-education session were inspired by the principles of FBT and were as follows: to educate parents, externalize the illness, increase empathy for the ill child, help parents to see the illness as controlling the child, lift blame from parents, raise their anxiety, and empower them to take charge of their child’s eating and nutritional intake (Le Grange, 2005).
Procedure All parents completed questionnaires before randomization (Time 1). The intervention group completed the same battery of questionnaires after the psycho-education session (Time 2-Intervention), and the control group completed their post questionnaires after being on the wait-list for approximately 1 month (Time 2-Control). Both groups repeated the battery of questionnaires at the time of their child’s comprehensive assessment (Time 3). At assessment, youth whose parents were participating in the trial were invited to participate in the study, and were asked to release information of questionnaires they completed as part of their formal assessment (questionnaire collection was part of standard practice). Age, gender, body mass index (BMI), and diagnosis were also collected at the time of assessment. As a final step, a qualitative follow-up interview was performed with some parents from the intervention group to elicit additional information on the helpfulness of the psycho-education session. This study was approved by the center’s research ethics board, and all participants provided informed consent after receiving a complete description of the study.
Measures Questionnaires assessed parent knowledge, symptom impact, self-efficacy pertaining to the eating disorder, help-seeking behavior, and satisfaction with the psycho-education session.
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PARENT MEASURES Parents Versus Anorexia. The Parents Versus Anorexia (PVA) is a 7-item scale that measures parental efficacy, defined as parents’ perceptions of their ability to adopt a primary role in taking charge of the eating disorder for the purpose of bringing about the recovery of their child (Rhodes, Baillie, Brown, & Madden, 2005). As an example, parents are asked to rate their response to questions such as “I feel equipped with specific practical strategies for the task of bringing about the complete recovery of my child in the home setting.” Parents rate each item on a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Total scores can range from 5 to 35, where higher scores are indicative of greater self-efficacy (Rhodes et al., 2005). The wording of this questionnaire was modified slightly for the purposes of this trial; questions referring to “anorexia nervosa” were substituted with “eating disorder” to make the questions more generalizable to all study participants. Eating Disorders Symptom Impact Scale. The Eating Disorders Symptom Impact Scale (EDSIS) is a 24-item scale that assesses the impact that an individual’s eating disorder symptoms have on family members and family life (Sepulveda et al., 2008). Higher scores are indicative of higher impact of symptoms. Knowledge of Eating Disorders Scale. The Knowledge of Eating Disorders Scale (KEDS) is an 82-item true/false questionnaire assessing general knowledge of eating disorders (Krysanski, Illing, Tasca, Demidenko, & Bissada, 2008). At the time of this study, there was no validated measure of eating disorder knowledge available. The KEDS is currently in development; early findings of the measure lend support for construct validity (Krysanski et al., 2008). Satisfaction Questionnaire. The Satisfaction Questionnaire asks parents to rate the quality and perceived helpfulness of the psycho-education session on a scale from 1 (poor) to 4 (excellent). YOUTH MEASURES Children’s Depression Inventory. The Children’s Depression Inventory (CDI) is a reliable and valid 27-item self-report measure widely used to evaluate symptoms of depression in children and adolescents aged 6 to 17 years (Kovacs, 1992). Age and gender normed total t-scores were used. Multi-Dimensional Anxiety Scale for Children. The Multi-Dimensional Anxiety Scale for Children (MASC) is a reliable and valid 39-item self-report questionnaire that evaluates a wide spectrum of common anxiety symptoms in youth aged 8 to 19 years (March, 1997; March, Parker, Sullivan, Stallings, & Conners, 1997). Age and gender normed total t-scores were used. Eating Disorder Examination Questionnaire-Adolescent. The Eating Disorder Examination Questionnaire-Adolescent (EDEQ-A) is a 36-item
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instrument assessing eating disorder behaviors, attitudes, and feelings (Carter, Stewart, & Fairburn, 2001). The global score was used in this study.
The statistical package for the social sciences (SPSS Inc.) version 21.0 with an alpha level of p < .05 was used for all analyses. A mixed-design analysis of variance (ANOVA) was used to test for differences between the control and intervention groups on repeated measures. Assumptions of the mixeddesign ANOVA were met, i.e., assumption of circularity, homogeneity of variance, and Box’s test of equality of covariance were not violated. Partial eta squared (partial η2 ) was used as a measure of effect size, where 0.01 was used to define a small effect, 0.06 a moderate effect, and 0.14 a large effect. The Student’s t-test was performed to compare the two groups on youth measures. The chi-square test was used to identify group differences in helpseeking behaviors.
RESULTS Parent Outcomes Self-efficacy. Self-efficacy scores across time are depicted in Figure 2, and marginal means are displayed in Table 1. Results of the ANOVA reveal a significant interaction effect between group and self-efficacy across time, Wilks’ Lambda = .58, F(2, 28) = 10.10, p < .001, partial η2 = .419. There was a significant main effect of time, Wilks’ Lambda = .34, F(2, 28) = 27.62, 28 26 Self-efficacy (total score)
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Statistical Analysis
24 22 20
Control (n = 13)
18
Intervention (n = 18)
16 14 12 10
T1
T2
T3
Time
FIGURE 2 Mixed model ANOVA of parent self-efficacy (PVA) total scores across three time points: T1 = baseline; T2 = post-psycho-education session for intervention group, and 1-month post-baseline for control group; T3 = assessment.
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TABLE 1 Marginal Means (M) and Standard Deviations (SD) Across Three Time Points for Control and Intervention Group of Parent Participants PVA M
14.38 15.92 16.46
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M
15.44 21.89 20.00
EDSIS SD
M
n = 11 3.18 3.28 4.10
53.31 57.16 59.48
n = 18
Intervention T1 T2 T3
SD n = 13
Control T1 T2 T3
KEDS
n = 15 13.05 13.62 11.78
30.73 − 28.93
n = 17 3.03 3.38 3.73
57.93 68.30 72.48
SD
7.45 − 14.58 n = 21
17.58 14.91 13.27
36.29 − 36.95
9.29 − 13.14
Note. T1 = baseline, T2 = post-psycho-education session for intervention group, and 1-month postbaseline for control group, T3 = assessment; PVA = Parents Versus Anorexia; KEDS = Knowledge of Eating Disorders; EDSIS = Eating Disorder Symptom Severity Scale; – = not applicable.
p < .001, partial η2 = .664, with both groups showing an increase in selfefficacy across the three time-points (see Table 1). The main effect of group was also significant, F(1, 29) = 10.35, p = .003, partial η2 = .263, suggesting that the two groups differed. Pair-wise comparisons reveal that self-efficacy did not differ between groups at baseline, F(1,29) = .866, p = .354, partial η2 = .030, but the intervention group reported significantly higher feelings of self-efficacy at Time 2, F(1,29) = 24.14, p < .001, partial η2 = .454, and at assessment (Time 3), F(1,29) = 6.27, p = .018, partial η2 = .178. Knowledge. Knowledge scores across time are depicted in Figure 3, and marginal means are displayed in Table 1. Results reveal a significant main effect of knowledge across time, Wilks’ Lambda = .54, F(2,25) = 10.85, p < .001, partial η2 = .465, suggesting that knowledge generally increases across the three measurement points. The main effect of group approached statistical significance, F(1, 26) = 3.49, p = .073, partial η2 = .118, and the interaction effect between group and time was not statistically significant, Wilks’ Lambda = .87, F(2, 25) = 1.83, p = .181, partial η2 = .128. Pair-wise comparisons show that knowledge did not differ between groups at baseline, F(1,26) = .556, p = .463, partial η2 = .021, and only approached statistical significance at Time 2, F(1,26) = 3.98, p = .057, partial η2 = .133, but had a large effect size, suggesting a trend that parents in the intervention group had higher knowledge post-intervention. The intervention group reported significantly more knowledge than the control group at Time 3, F(1,26) = 6.99, p = .014, partial η2 = .212, indicating that parents in the intervention group have higher levels of knowledge of eating disorders at assessment. Symptom impact. Marginal mean scores on the EDSIS are displayed in Table 1. Results do not reveal a significant interaction effect between group
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Self-efficacy (total score)
26 24 22 20
Control (n = 13)
18
Intervention (n = 18)
16 14 12
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10
T1
T2
T3
Time
FIGURE 3 Mixed model ANOVA of parent self-efficacy (PVA) total scores across three time points: T1 = baseline; T2 = post-psycho-education session for intervention group, and 1-month post-baseline for control group; T3 = assessment.
and symptom impact across time (T1 to T3), Wilks’ Lambda = .10 F(1, 32) = .163, p = .689, partial η2 = .005. The main effect of time was not significant, Wilks’ Lambda = .99 F(1, 32) = .331, p = .569, partial η2 = .010, neither was the main effect of group, F(1, 32) = 3.01, p = .093, partial η2 = .086. These results suggest no differences across groups or time in terms of how parents perceive the impact of the eating disorder symptoms. Help-seeking behaviors. Chi-square analyses revealed that significantly more parents in the intervention group accessed literature (i.e. books, websites) to learn about eating disorders while on the waiting list (94.4% versus 60.0%, p = .016). There were no significant group differences in terms of seeking additional mental health services in the community, or seeing a physician while on the waiting list. Satisfaction. Overall, parents in the intervention group were very satisfied with the quality of the workshop (M = 3.91, SD = 0.29), and felt that they received the kind of information they were hoping for (M = 3.59, SD = 0.50). Furthermore, parents found the information very helpful (M = 3.73, SD = 0.46), and would recommend the workshop to other families (M = 3.91, SD = 0.29).
Youth Outcomes Out of 36 consenting youth participants, 55.6% (n = 20) were diagnosed with Eating Disorder Not Otherwise Specified (EDNOS), 22.2% (n = 8) with AN, 11.1% (n = 4) with BN, and 11.1% (n = 4) were not diagnosed with an eating disorder.3 In comparison, out of all patients assessed during the
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TABLE 2 Means (M) and Standard Deviations (SD) of Youth Outcomes Measured at the Time of Formal Assessment Control n = 16 Measure Age (years) BMI (kg/m2 ) CDI total t-score MASC total t-score EDEQ-A total scorea
Intervention n = 20
M
SD
M
SD
t (df = 34)
p-value
15.99 21.61 64.00 57.69 2.77
1.32 3.99 17.12 13.08 1.85
15.39 20.10 69.00 59.35 3.75
1.57 4.09 18.15 13.57 1.64
1.21 1.11 −.842 −.371 −1.64
.235 .277 .406 .713 .111
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Note. BMI = body mass index; CDI = Children’s Depression Inventory; MASC = Multidimensional Anxiety Scale for Children; EDEQ-A = Eating Disorder Examination Questionnaire for Adolescents. a n = 15 for control group and n = 19 for intervention group, and df = 32 for EDEQ-A.
same 2.25-year period, 41.4% were diagnosed with EDNOS, 47.7% with AN, 5.5% with BN, and 4.7% with no eating disorder. Table 2 displays means and standard deviations of youth outcome measures at assessment (Time 3). Independent samples t-tests revealed that youth did not differ at the time of formal assessment in terms of depression, anxiety, eating disorder thoughts and behaviors, and BMI.
Qualitative Component All intervention group parents were invited to participate in a brief telephone interview. The goal of the interview was to gather feedback from parents to understand what they found helpful about the psycho-education session, and if anything changed at home after attending the session. A total of six parents agreed to participate. Most parents mentioned that the information they received made them realize just how ill their child was, and that this was a good thing. Even though some of the information was frightening, because the psycho-education session was delivered face-to-face, parents felt reassured that there were people who could help. Parents also said that attending the psycho-education session made them more aware of the different eating disorder behaviors their child may be displaying, so that they knew what to look for. When asked about what changed after attending the psycho-education session, parents described feeling more empowered, less guilty, less helpless, and less hopeless. Parents appreciated knowing there were things they could do to help their child. In terms of how meal times changed after the psycho-education session, responses varied. For example, one parent said they tried to have more meals as a family, and another parent said meal times deteriorated rapidly because of the severity of the child’s illness at the time. Overall, the six intervention group parents found the psycho-education session helpful.
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The following are a few direct quotations from intervention-group parents who participated in the telephone interview: It was really helpful. I became home more confident in my role as caregiver, really, and helping her with it [the eating disorder]. I felt calmer.
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It was a bit shocking when he [MN] revealed that the heart muscle gets weak, and all the damage that is going on in the body that you can’t see, like the brain shrinking, and bone loss. It was kind of a shock, but I’m glad I received that information. You don’t want to hear it, but you need to hear it. It took some of the guilt away. It empowered me a little bit in the sense that I could make a difference. I could be a key element to helping my daughter get better.
Parents also provided a few suggestions for improvement, including: (a) describing the many different types of eating disorders in more detail because one parent felt their child did not closely resemble a diagnosis of anorexia or bulimia nervosa, (b) providing tips on what to tell the child’s school, (c) suggesting questions and topics to discuss with a general practitioner without specialized experience treating eating disorders, (d) providing situation-specific phrases parents can use with their child, and (e) discussing different medications that may be helpful in the treatment of eating disorders and why they might be recommended.
DISCUSSION This study aimed to evaluate the efficacy of a 2-hour psycho-education session directed at increasing parent knowledge about eating disorders, improving their feelings of self-efficacy in helping their child recover, decreasing the impact of the eating disorder on the family, and improving the presentation of the patient at time of assessment. To our knowledge, this initiative was the first to investigate the effectiveness of delivering a brief, FBT-inspired psycho-education intervention to parents of youth on a waiting list, whose referral had been initiated but who were awaiting assessment and treatment. The psycho-education session was successful at increasing parents’ general knowledge about eating disorders, as well as their feelings of self-efficacy. Research on other illnesses and chronic conditions, such as cancer and diabetes, has shown that parental self-efficacy has positive implications for the child’s treatment and illness management (Harper et al., 2013; Law, Walsh, Queralt, & Nouwen, 2013). It is well-documented in the literature that increasing knowledge and self-efficacy are positively related to improvements in health. It has also been shown that increases in parent
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self-efficacy predict a decrease in adolescent eating disorder symptoms (drive for thinness and body dissatisfaction) while participating in FBT (Robinson, Strahan, Girz, Wilson, & Boachie, 2012). It is expected that self-efficacy would increase while in treatment, but our findings suggest that parent self-efficacy significantly increased after this brief intervention. This has significant clinical implications; if parents are given a brief intervention prior to engaging in treatment, it is possible that outcomes could be positively affected. Furthermore, offering a brief intervention to parents whose children are awaiting services may prevent the child’s deterioration, as well as help families cope while waiting. In terms of eating disorder symptom impact, results do not suggest any group differences across time. This is surprising given that when a small sample of intervention-group parents were interviewed, many parents mentioned being more aware of what eating disorder symptoms looked like, and what behaviors to watch for. One might therefore speculate that the intervention group could be more impacted by their child’s eating disorder symptoms given that they are more conscious of what to look for, but the data do not support this idea. This null finding may be explained by a small sample size and hence low power, or a measurement issue. No differences were evident in patient symptoms between groups at the time of formal assessment. Because youth variables were not assessed at baseline, it is difficult to draw any meaningful conclusions from this comparison. Even though participants were randomized, patients in both groups could have differed at baseline, or maybe the brief intervention was simply not powerful enough to effect any measurable change in patients at the time of presentation for assessment. Finally, it is possible that the intervention was targeted more at individuals with restrictive eating disorders, who make up a larger proportion of the patients treated in our program,4 but that the youth of parents in the study were those not needing an urgent assessment, and thus were more likely to be diagnosed with EDNOS or BN. Our findings are mostly in line with previous research demonstrating the efficacy of psycho-education interventions for parents of individuals suffering from an eating disorder. As an example, a study examining the efficacy of a group parent-training program as an adjunct to outpatient treatment found that parental self-confidence in helping manage their child’s eating disorder increased post-intervention (Zucker et al., 2006). Research on psycho-education groups (including FBT-inspired groups) for parents/ caregivers of individuals with an eating disorder have shown some success as an adjunct to treatment (Macdonald et al., 2011; Robinson et al., 2012; Sepulveda et al., 2008; Uehara et al., 2001; Zucker et al., 2006). Our findings build on previous research by demonstrating that a brief psycho-education session can be helpful to families on a waiting list, even before treatment formally starts. Although important findings emerged from the present study, a number of limitations should be recognized. First is the relatively small sample
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size, which decreased power and made it impossible to look at diagnostically homogenous groups. Therefore, we are not able to discern whether the youth’s symptoms played a role in parent outcome post-intervention or at assessment (e.g., the EDSIS). Another limitation is that youth questionnaires were not administered at baseline, which limits the interpretability of findings. The key strength of the present study is the concept of an intervention for families on a waiting list, who would otherwise not have access to any services, plus the inclusion of a control group. Other strengths include the use of validated questionnaires, as well as objectively measured BMI, and clinician-determined eating disorder diagnosis. Future studies using larger sample sizes should assess youth at baseline, and compare post-treatment outcomes in the two groups to determine whether the addition of a psycho-education session based on FBT principles offered to parents of adolescents on an eating disorder program waiting list provides any added benefit to treatment length or outcome. Overall, results of our study are promising in that they suggest that a single, brief, cost-effective psycho-education session plus some follow-up telephone calls offered to parents awaiting services may help parents manage their child’s illness by increasing parental knowledge and feelings of self-efficacy.
ACKNOWLEDGMENTS The authors would like to thank Meghan McInnis (Queen’s University, Department of Psychology) for taking the time to gather parents’ feedback about the trial. The authors do not have any conflicts of interest to disclose.
FUNDING This work was supported by the Academic Health Science Centers Alternative Funding Plans Innovation Fund, and the Psychiatry and Summer Studentship Funds of the Children’s Hospital of Eastern Ontario Research Institute.
NOTES 1. Patients referred to the eating disorder program were triaged according to the center’s current standard practice, which takes into consideration the patient’s age, body mass index, weight loss, and laboratory and electrocardiogram results. Information was gathered from the referring physician, and medical stability was determined by the registered nurse case coordinator. Patients deemed medically stable were placed on a waiting list for a formal assessment, and parents were advised to continue regular appointments with their child’s primary care provider until the time of assessment. 2. Help Your Teenager Beat an Eating Disorder by James Lock and Daniel Le Grange; Skills-based Learning for Caring for a Loved One with an Eating Disorder by Janet Treasure, Grainne Smith, and
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Anna Crane; Help for Eating Disorders: A Parent’s Guide to Symptoms, Causes, and Treatment by Debra Katzman and Leora Pinhas. 3. The four participants not diagnosed with an eating disorder at assessment had the following diagnoses: selective eating (n = 1), pervasive developmental disorder and suboptimal nutrition (n = 1), weight loss secondary to depression and anxiety (n = 1), and disordered eating and major depressive disorder (n = 1). 4. 51% are diagnosed with a restrictive eating disorder, versus 33% with EDNOS and 11% with BN.
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