Consumer advocacy meetings: An innovative therapeutic tool
South African Medical Research Council Research Unit on Anxiety and Stress Disorders, Department of Psychiatry, Stellenbosch University, Matieland, Stellenbosch, South Africa
South African Medical Research Council Research Unit on Anxiety and Stress Disorders, Department of Psychiatry, Stellenbosch University , Matieland, Stellenbosch, South Africa Department of Psychiatry and Mental Health University of Cape Town Rondebosch, Cape Town, South Africa
Trichotillomania Learning Center, Santa Cruz, CA, USAChristina Pearson
Trichotillomania Learning Center, Santa Cruz, CA, USA
BACKGROUND: Consumer advocacy groups are fulfilling an increasingly important role in psychiatry. The Trichotillomania Learning Center (TLC) aims to improve the quality of life of individuals with body-focused repetitive behavioral (BFRB) disorders such as trichotillomania (hair pulling disorder [HPD]) and skin picking disorder. The annual TLC retreat is an educational event focused on experiential learning and building a supportive community.
METHODS: We assessed attendees’ impressions of and experiences from the 2010 TLC retreat.
RESULTS: Sixty-two (57 female; mean age: 32.4, standard deviation: 14.6) attendees completed the survey. Fifty-five reported ≥1 current BFRBs, 6 were family members of attendees, and 1 participant reported HPD in remission. Most attendees found the TLC retreat to be a helpful intervention that offered support and information on BFRB disorders. Attendance was accompanied by reduced stigma, shame, and loneliness. Attendance also increased many respondents’ levels of motivation to stop pulling or picking (85%); 61% of respondents reported reduced pulling or picking. Most respondents (95%) reported learning new ways of managing the condition.
CONCLUSIONS: Survey findings suggested most attendees found the annual TLC retreat to be a helpful intervention. The retreat may serve as a novel and innovative model for helping individuals suffering from a range of other psychiatric disorders.
KEYWORDS: consumer advocacy groups, treatment, trichotillomania, hair pulling disorder, skin picking disorder, body-focused repetitive behavioral disorders
ANNALS OF CLINICAL PSYCHIATRY 2013;25(2):91-96
Consumer advocacy groups are fulfilling an increasingly important role in psychiatry. Such groups often involve the active participation of consumers—individuals with psychiatric disorders and their significant others—as well as service providers—health care professionals—to address the burden of perceived powerlessness, limited treatment options, and stigmatization by the media and others. Examples of such advocacy groups include the National Alliance on Mental Illness, the Schizophrenia Society of Canada, Rethink Mental Illness in the United Kingdom, and the South African Depression and Anxiety Support Group. These groups provide support and information about psychiatric disorders to the public and actively campaign against stigma and for change through greater awareness and understanding.
The Trichotillomania Learning Center (TLC) is an advocacy group with the mission of improving the quality of life of children, adolescents, and adults with trichotillomania (hair pulling disorder [HPD]) and related body-focused repetitive behavioral (BFRB) disorders—eg, skin picking disorder (SPD). There is growing evidence that these conditions are characterized by severe distress and impaired functioning, and also lead to a variety of psychosocial consequences in all age groups.1-3 Shame, low self-esteem, and comorbid psychiatric illnesses, as well as frustration and feelings of powerlessness often characterize individuals with BFRB disorders and their significant others.1,3-5 Many affected individuals and families cannot find local treatment providers with sufficient knowledge to help treat or reduce problematic behaviors.6
The TLC is committed to address these issues by disseminating information and raising awareness of these disorders, promoting research and treatment advances, and providing support to patients and their families. The group achieves this by using a number of methods, including hosting an annual TLC retreat in the United States This retreat is a 3- to 4-day meeting featuring programs for adults, parents, children, and adolescents. The TLC retreat is designed to aid people in living with HPD and other BFRB disorders by providing a “recovery jumpstart” through intensive psychoeducation and an experiential process in an informal environment. It is always held in a rustic camp or “retreat”-like setting to create a sense of separation from one’s normal lifestyle conditions and patterns.
Although many of the TLC retreat participants have posted positive feedback about their experience on the TLC website, attendees’ impressions of and experiences at these TLC retreats, as well as the subsequent impact of their attendance on their symptoms, have not been formally assessed or documented.
We surveyed 2010 TLC retreat attendees and investigated the extent to which they found it to be a helpful intervention that offered support and information on hair pulling and other BFRB disorders, reduced stigma and shame about BFRB disorders, and diminished symptoms of BFRB disorders.
TLC retreat attendees—people with HPD and/or related BFRB disorders and their significant others—were encouraged to complete the survey anonymously to ensure a representative sample.
In the survey, items focused on attendees’ impressions of and experiences at the retreat. Likert-type items assessed whether attendees felt their needs were addressed and whether the retreat format—meetings, lectures, group, experimental, and practical sessions—was acceptable and effective. Attendees indicated whether they “strongly disagreed,” “somewhat disagreed,” “strongly agreed,” “somewhat agreed,” or felt “neutral” about the item.
The survey included a section with “general” items, eg, “I enjoyed this year’s retreat” and “This year’s retreat was well organized,” and a section with items covering attendees’ experiences before the retreat (eg, “I have spoken about my pulling/picking either with friends or family”) and at the retreat (eg, covering their impressions of the lectures and social activities). The survey was available at the retreat as a pen-and-paper, anonymous, self-report scale to be completed after lectures, or on the TLC website.
We first report on the demographics and the characteristics of the attendees. We subsequently provide a description of survey responses (frequencies), summarizing attendees’ views of the retreat’s organization, their experiences (eg, shame and stigma) before attending the retreat, their experiences at the retreat (eg, levels of motivation to stop pulling or picking or ways of managing the condition, sharing stories, addressing shame and stigma) and future expectations after attending the retreat.
The survey stated that all results of the study would be published without compromising the confidentiality of any of the respondents. All information was delinked from participant identifying information and participating individuals incurred no costs. It was clearly indicated that participants were free to not complete this survey or the other questionnaires without compromise in terms of future interaction with TLC. All patients gave written informed consent for research participation. It also was indicated in the informed consent that participants would not benefit from participation in the survey in the short term but that it was envisaged that the survey results would be given to the TLC and may be used to adjust preparations for future retreats.
The TLC Board of Directors (USA) and the Health Research Ethics Committee of the University of Stellenbosch (South Africa) approved the study protocol and survey.
There were 15 TLC staff, professionals, or treatment providers, and 103 other attendees at the 2010 retreat. More than one-half of these attendees (n = 62; 57 female), completed the survey. Reported ages at the time of the retreat ranged from 10 to 64 (mean: 32.4, SD: 14.6). All participants were from the United States; 56 were white, 1 was African-American, and 5 were of Hispanic or Latino descent.
In the group of 62, 11% of respondents identified as having only HPD, 53% had HPD and ≥1 additional BFRB disorders, 24% had ≥1 BFRB disorders other than HPD, and 11% were “other” respondents (family members of attendees, and a participant whose HPD was in remission).
SPD was the most frequent diagnosis in the group diagnosed with a BFRB disorder other than HPD (n = 7). The numbers of participants in the study sample presenting with each of the BFRB disorders are depicted in the TABLE.
Of the 55 attendees with a BFRD, most had 2 BFRB disorders (n = 26; 47%); 11 (20%) reported having 1 BFRB disorders (either HPD or any other disorder), 13 (24%) reported having 3 BFRB disorders, 3 (6%) reported having 4 BFRB disorders, 1 person reported having 5 BFRB disorders, and 1 person reported having 6 BFRB disorders.
Participants with BFRB disorders
|Type of BFRB
||Attendees with a BFRB disorder (n = 55)
|Chewing lips or cheeks
Retreat survey findings
Survey findings can be summarized in terms of attendees’ enjoyment of the retreat, the way in which the retreat was organized, attendees’ experiences (eg, shame and stigma) before attending the retreat, their experiences at the retreat (eg, levels of motivation to stop pulling or picking or ways of managing the condition, sharing stories, addressing shame and stigma) and future expectations after attending the retreat.
Enjoyment. It appears most respondents generally enjoyed this year’s retreat (n = 57; 92%), especially the social activities (n = 59; 95%).
Organization. More than 90% (n = 57; 92%) of attendees agreed that the retreat was well organized (n = 37 “strongly agreed,” n = 20 “somewhat agreed”). Twenty-four (39%) attendees felt the retreat should have been longer in duration, 39% (n = 24) thought it could have been shorter, and the remaining attendees were neutral (n = 14; 23%) about the duration.
In the open-ended section of the survey, respondents voiced their opinions about the organization of the retreat in somewhat more detail. These mostly included complaints—eg, inadequate handouts, not enough free time, poor quality of the retreat venue, and that SPD didn’t receiving enough focus—and suggestions as to how to improve in the future.
Impressions and experiences before attending the retreat. Of the attendees with ≥1 BFRB disorders, many (n = 43; 78%) reported that they spoke about their hair pulling or BFRB disorders to others, whereas some (n = 12; 22%) reported never speaking about it to others. Forty (73%) respondents reported feeling stigmatized, alone, or isolated, and 45 (82%) felt ashamed because of their pulling or picking.
Impressions and experiences at the retreat. Generally, attendees said they gained much by attending (n = 53; 85%) and also learned from other participants (n = 58; 94%). Attending the retreat changed most (n = 50; 82%) attendees’ feelings about the disorder for the better. Forty-eight (77%) attendees reported the retreat altered their perspectives of the disorder. Some also felt that the retreat helped others to understand them (19 of 43; 44%) and their symptoms (23 of 43; 53%) better, whereas others (38 of 43; 88%) were neutral or disagreed (6 of 43; 14%) with these statements. Many respondents reported that they felt more competent to live a fully engaged life since attending the retreat (40 of 57; 70%) and most (59 of 61; 97%) indicated that they felt encouraged since attending the event.
Almost all attendees (n = 61; 98%) reported they were given the opportunity to share their experiences and views and 54 (87%) felt they had shared much about themselves, something most attendees (n = 55; 89%) found helpful. Hearing others share their stories was useful to respondents, especially in terms of increasing knowledge about pulling or picking (53 of 61; 87%), reducing stigma (44 of 56, 79%), loneliness or isolation (43 of 55, 78%), and shame (40 of 54, 74%) experienced because of pulling or picking.
Forty-nine (79%) attendees indicated they had heard recovery stories at the retreat. There were 47 (85%) attendees who reported increased levels of motivation to stop pulling or picking. Almost all reported having learned new ways to control the condition (51 of 57; 89%). The FIGURE depicts the number of attendees who reported reduced hair pulling or picking while attending the retreat; 61% (31 of 51) reported reduced pulling or picking since attending the retreat and 39% (n = 20 of 51) reported no change or worse pulling or picking at the retreat.
FIGURE: Number of attendees reporting reduced hair pulling or BFRB disorders since the retreat
BFRB: body-focused repetitive behavioral.
In the open-ended section of the survey, some respondents (n = 11; 20%) indicated that the most important lessons learned during the retreat were that there is hope and that they can regain or gain the motivation to stop pulling or picking. Many respondents also mentioned that they have learned that they were “beautiful,” “pretty,” “OK,” and “can be themselves around others” (n = 10; 18%).
Lecture topics included current BFRB disorder research findings, cognitive-behavioral change strategies, shame reduction and self-esteem building, enhancing self-care, as well as makeup application and hair and skin care techniques. Most attendees found these and other lectures to be useful, especially in terms of increasing their knowledge of pulling or picking (52 of 59; 88%), reducing stigma (40 of 54; 74%), loneliness or isolation (36 of 53; 68%), and shame (35 of 53; 66%) they felt because of their pulling or picking. A few respondents (n = 6; 11%) indicated that increased knowledge of HPD or BFRB disorders were the most important aspects gained from attending the retreat.
Five respondents (9%) indicated they realized that it is important to take care of themselves and their bodies and that they should remain aware of their body’s needs. Getting support also was indicated as important (n = 3; 5%). One attendee reported that she realized the TLC does important work and 4 respondents (7%) indicated that TLC is doing a “great job” educating the public and with their research.
Expectations for the future after attending the retreat. More than 75% (47 of 61; 77%) indicated that they hope to attend next year’s retreat. Suggestions for next year’s retreat included the idea of compiling and sending a list of all treatment techniques that were discussed at the retreat to attendees afterwards (eg, via email, TLC website, etc.).
A wide variety of people attend the annual TLC retreat, including health care professionals and consumers and family members and significant others of consumers. The event surveyed here hosted academic lectures led by health care clinicians as well as more informal or experiential group sessions led by service users and others (eg, TLC staff, hair stylists, beauticians, etc.). The retreat aimed to address the lack of knowledge, stigma, shame, loneliness, and the lack of support for individuals affected by BFRB disorders.
Generally, attendees were positive about the impact of the retreat. The majority of respondents reported that the retreat was a helpful intervention and that they gained much by attending. Many attendees with a BFRB disorder reported that the retreat changed their perspectives of their disorder(s) and that of their significant others for the better. Individuals with BFRB disorders often have shame and embarrassment,4 and retreat lectures and other sessions may be useful. Retreats can give attendees the opportunity to share their personal experiences, learn from others, increase their knowledge on pulling or picking, and ultimately reduce the shame and embarrassment associated with these disorders. Many respondents also reported that there were fewer pulling or picking symptoms and reduced loneliness or isolation (due to their pulling or picking) while attending the retreat.
One of the primary aims of the annual TLC retreat is to provide intensive psychoeducation to service users and their significant others. This approach may be similar to other psychoeducational programs; however, the TLC retreat is novel in that it is held in an informal environment that provides distance from regular thinking and behavior patterns and surroundings (www.trich.org), which may increase the motivation and ability to change problematic behaviors and perspectives.
The format of the annual TLC retreat appears innovative in many ways: 1) professionals, consumers (those with BFRB disorders), and family members attend; 2) there are lectures and sessions by health care professionals and consumers, as well as other related professionals, eg, hair stylists or experts on caring for hair pieces or wigs, beauticians, etc.; and 3) the focus is on experiential learning and building a supportive community. This kind of format also may be useful for a range of other psychiatric disorders characterized by stigma, shame, and a lack of support.
Although the survey results indicated a positive retreat experience for most, participants had suggestions for improvements. The group of respondents with BFRB disorders other than HPD reported feeling neglected in terms of the number and focus of lectures. This may be because they were in the minority and because HPD traditionally has been the TLC’s main focus of attention because of the larger numbers of hair-pullers that reach out for help. Future retreats also may focus on treatment strategies for BFRB disorders other than HPD.
Limitations of the survey include the relatively low response rate (60%). Given the focus of this survey—the impressions of and experiences of attendees at the 2010 TLC retreat—the low response rate arguably constitutes a limitation, and may introduce bias. However, the survey was done at breakfast on the final day of the retreat, which many attendees did not attend, so non-response is unlikely to reflect a systematic bias. However, respondents were mostly adults, and the findings may not be applicable to all age groups. Feedback from children and adolescents should be encouraged because younger patients may require specific kinds of interventions and educational programs.7 The absence of a pre- and a post-survey format also can be considered a limitation. Despite the limitations, this survey does have several strengths, the most important being that this is the first attempt to formally assess and document service users’ and their significant others’ impressions of and experiences at these TLC retreats, as well as the impact of their attendance on their symptoms.
Survey findings suggested that most attendees found the annual TLC retreat a helpful intervention, offering support, and reduction of stigma, loneliness, and shame associated with BFRB disorders, as well as some knowledge on treatment options for individuals with these conditions. A follow-up survey would be useful to see whether gains from attending the TLC retreat are sustained over time. Indeed, other studies8-10 have highlighted the problem of relapse following treatment discontinuation. In the interim, the data here suggest that the TLC retreats may not only provide a useful therapeutic tool for individuals with BFRB disorders but also may provide a useful consumer advocacy model for a range of other psychiatric disorders characterized by stigma, shame, and a lack of support.
DISCLOSURES: Dr. Stein has received research grants and/or consultancy honoraria from Abbott, AstraZeneca, Danippon Sumitomo, Eli Lilly and Company, GlaxoSmithKline, Jazz Pharmaceuticals, Johnson & Johnson, Lundbeck, Orion, Pfizer, Pharmacia, Roche, Servier, Solvay, Takeda, Tikvah, and Wyeth. He is also a member of the Scientific Advisory Board of the Trichotillomania Learning Center (TLC). Both Drs. Stein and Lochner are members of the Trichotillomania International Consortium for Research (TrIC Research) and Dr. Lochner has received funding from TrIC Research. Ms. Raikes is the Executive Director and Ms. Pearson is the Founding Director of the TLC.
ACKNOWLEDGEMENTS: We would like to express our appreciation to all retreat attendees who completed this survey at the Trichotillomania Learning Center (TLC) retreat in 2010. Our special thanks to Ms. Leslie Lee from the TLC for her assistance with the preparation, distribution, and collection of survey materials. The assistance and support of Dr. Nancy Keuthen (Massachusetts General Hospital/Harvard Medical School, Boston, MA, USA), beforehand, and Dr. Charles Mansueto (Behavior Therapy Center of Greater Washington DC, Silver Spring, MD, USA) at the retreat is also gratefully acknowledged. The authors also thank the TLC for its support.
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CORRESPONDENCE: Christine Lochner, MA, PhD PO Box 19063 Tygerberg 7505 South Africa E-MAIL: firstname.lastname@example.org
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