Girls connect

LETTERS

TO THE

EDITOR

Girls Connect: Effects of a Support Group for Teenage Girls with Inflammatory Bowel Disease and Their Mothers To the Editor: We bring to your attention a recent pilot intervention trial for girls with inflammatory bowel disease (IBD) conducted by the staff of the Children’s Hospital of Pittsburgh (CHP). The Crohn’s and Colitis Foundation of America (CCFA), Western Pennsylvania/West Virginia Chapter, received funding from the FISA Foundation (FISA is a foundation that provides grants to nonprofit organizations in southwestern Pennsylvania that improve the lives of women, girls, and people with disabilities) to initiate a support program for adolescent girls age 12–17 and their mothers, focused on enhancing coping skills and improving quality of life (QOL). Female caregivers were targeted since they were more likely involved in the daily care of their child’s illness. The project received approval from the University of Pittsburgh Medical Center Institutional Review Board. Girls were recruited by the local CCFA chapter through a mailing and via the local CCFA website. Open enrollment was adopted to accommodate individuals who were unable to attend all of the meetings, but who expressed a desire to participate in the intervention, and informed consent was obtained from all participating mothers and daughters. The CCFA partnered with the Medical Coping Clinic at CHP to create the Girls Connect (GC) Program, a 10-

Copyright

© 2009 Crohn’s & Colitis Foundation

of America, Inc. DOI 10.1002/ibd.20775 Published online 29 October 2008 in Wiley InterScience (www.interscience.wiley.com).

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month series of support group workshops for girls with IBD and their mothers. GC participants met monthly at a local community center where each session was facilitated by medical professionals from the Medical Coping Clinic. Mothers and daughters socialized over dinner for the first hour of each group meeting, then attended an educational program that concluded with a questionand-answer period facilitated by group leaders or a guest gastroenterologist. Educational topics included: 1) Exercise, Diet, and IBD, 2) Academic Performance, 3) Stress Management, 4) Transitioning to College, 5) Complications of IBD, 6) IBD Treatment Compliance, 7) Dating and Intimacy, 8) Chasing Away the Blues, 9) IBD versus IBS, and the final meeting was a wrap-up session. Girls and their mothers were first separated to allow each group independent time to ask questions of the guest speaker, group leaders, and each other, and were then reunited to facilitate discussion between mothers and daughters. At times in vivo execution of the educational topics (e.g., yoga or guided imagery for relaxation) was also built into the program. At the end of each session the group leaders administered self-report measures of helpfulness and satisfaction1,2 to each mother and daughter that were then collected anonymously. Measures of health-related QOL3,4 were also administered to each girl at her first and last sessions of attendance. Twelve mother– daughter dyads attended at least 1 session. Eleven girls completed the QOL measure at both timepoints, with 1 daughter–mother dyad who attended only the last few sessions, providing post-GC data only. The mean age was 14.5 years (SD ⫽ 2.0 years), and the primary presenting diagnosis was Crohn’s disease (n ⫽ 11, 91.7%). On average, girls attended 4.1 out of 10 sessions (SD ⫽ 2.2) and mothers attended 4.8 sessions (SD ⫽ 2.0). Overall, both daughters and their mothers rated the GC program as very helpful (M(daughters) ⫽ 6.08 out of 7, with 7

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being the most helpful (SD ⫽ 0.9); M(mothers) ⫽ 6.19 out of 7 (SD ⫽ 0.9)) and very satisfying (M(daughters) ⫽ 6.25 out of 7, with 7 being the most satisfying (SD ⫽ 0.8); M(mothers) ⫽ 6.30 out of 7 (SD ⫽ 0.9)). The topics rated most favorably by both mothers and daughters included Transitioning to College; Exercise, Diet, and IBD; and Stress Management. Daughters reported that the session on Dating and Intimacy was very helpful, and mothers rated the session on Complications of IBD most helpful. Unpaired t-tests revealed significant improvements in self-reported emotional and social functioning after the GC program (see Table 1), as well as marginally significant improvements in total IMPACT-III QOL scores. No pre/ post differences emerged on bowel or systemic symptoms, body image, or feelings about treatment/interventions. In summary, girls reported better QOL and improved emotional and social functioning post-GC, although indexes of bowel and systemic symptoms showed no significant postintervention effect. These results suggest that GC may have improved girls’ ability to cope with their IBD while not affecting the frequency or severity of physical symptoms. Alternatively, the effects of psychosocial interventions on disease activity may emerge over time, following sustained reductions in stress levels, although without follow-up data on disease activity this effect cannot be determined. Also, given that the intervention was carried out as an open-trial and lacked any control group, it is impossible to conclude whether observed changes in QOL were a direct effect of the GC program. Future work comparing individuals who participate in GC with those in a no-treatment control group will be necessary to fully understand the efficacy of this intervention. Moreover, future research should include postintervention follow-up to determine whether improvements in functioning are maintained over time. Additionally, given the

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Volume 15, Number 8, August 2009

TABLE 1. Pre/post Differences in IMPACT-III Quality of Life Scores

Total quality of life (35 – 175) Bowel symptoms (7 – 35) Systemic symptoms (3 – 15) Emotional functioning (7 – 35) Social functioning (12 – 60) Body image (3 – 15) Treatment/interventions (3 – 15) a

Prea

Posta

82.64 (27.08) 17.09 (5.30) 7.27 (3.10) 19.18 (6.35) 25.27 (9.77) 7.00 (2.24) 6.82 (2.60)

67.92 (13.24) 15.42 (5.53) 6.25 (1.48) 14.25 (2.26) 19.33 (3.14) 6.25 (2.26) 6.42 (2.19)

t-statistic t(21) t(21) t(21) t(21) t(21) t(21) t(21)

⫽ ⫽ ⫽ ⫽ ⫽ ⫽ ⫽

1.68† 0.74, n.s. 1.02, n.s. 2.52** 2.00* 0.80, n.s. 0.40, n.s.

Values represented depict M (SD) . P ⬍ 0.10 ; *P ⬍ 0.05; **P ⬍ 0.01, 1-tailed.

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variety of educational topics covered and the different types of social support provided, the current study does not allow for identification of the most helpful intervention components. Future work with multiple, more specific treatment groups targeted at these different foci may improve our ability to understand the most potent components of GC. Additionally, replication with larger samples employing more detailed measures of process (e.g., physical measures of disease activity, parent– child communication, coping self-efficacy) could allow for statistical examination of mediating factors that may contribute to improvements in QOL. In particular, it would be helpful to correlate improvement data with clinical disease activity to see if the effect of GC was related to change in physical functioning. Testing the effects of a comparable intervention across different samples (e.g., boys with IBD, younger children or college-aged youth, fathers and siblings of children with IBD) will also be important to address possible selection bias and increase generalizability of the present results. A larger, more diverse sample would also allow for identification of moderating factors (e.g., race, socioeconomic status, educational factors, IBD severity) that could influence the impact of the intervention participants. Unfortunately, a number of families expressed some difficulty with transportation to meetings

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and were not able to attend as many sessions as they would have liked. Integration of telecommunication, computer-based illness journaling,3 and access to information on websites (e.g., www.ccfa.org) may allow even greater access to and participation in such supportive psychoeducational interventions. Several other limitations of this research warrant mention. First, there was significant heterogeneity in the number of sessions attended by each participant, so future research should examine whether dose of support group exposure moderates intervention effects. Second, only self-report data were collected and objective indicators of social, emotional, and health functioning were not available to corroborate reported effects. Third, helpfulness and satisfaction measures were collected by clinicians known to some participants and with whom a number of participants would likely interact again, introducing a potential bias to complete surveys more favorably. Finally, the current study did not examine effects of the intervention on mothers’ QOL, another important direction for future research. Despite its small scale and exploratory nature, we believe this preliminary intervention represents a solid first step in improving QOL and socioemotional functioning in girls with IBD, an underserved population at risk for diminished QOL. Specifically, results suggest that

girls with IBD and their mothers find monthly meetings incorporating psychoeducation and peer support both helpful and satisfying. Additionally, GC also holds promise for enhancing well-being among adolescent girls with IBD. The GC program could serve as a model for other pediatric illness groups and warrants further study. Eva Szigethy, MD, PhD Diana Hardy, MS Anna E.Craig, MS Carissa Low, PhD Susan Kukic, BS Children’s Hospital of Pittsburgh University of Pittsburgh Medical Center Gastroenterology/Psychiatry Pittsburgh, Pennsylvania

REFERENCES 1. Beardslee WR, Keller MB, Lavori PW, et al. The impact of parental affective disorder on depression in offspring: a longitudinal followup in a nonreferred sample. J Am Acad Child Adolesc Psychiatry. 1993;32:723–730. 2. DeMaso DR, Gonzalez-Heydrich J, Erickson JD, et al. The Experience Journal: a computerbased intervention for families facing congenital heart disease. J Am Acad Child Adolesc Psychiatry. 2000;39:727–734. 3. Otley, A, Smith, Nicholas D, et al. The IMPACT Questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2002;35:557–563. 4. Otley, AR, Xu, S, Yan, S, et al, and the REACH Study Group. IMPACT-III is a valid, reliable and responsive measure of health-related quality of life in pediatric Crohn’s disease. J Pediatr Gastroenterol Nutr. 2006; 43(Suppl 2):S49.