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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
Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences a
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David Clinton , Linn Almlöf , Sofia Lindström , Moa Manneberg & Lena Vestin
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Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Stockholm, Sweden b
Department of Psychology, Stockholm University, Stockholm, Sweden c
Dala ABC, Falun, Sweden Published online: 08 May 2014.
To cite this article: David Clinton, Linn Almlöf, Sofia Lindström, Moa Manneberg & Lena Vestin (2014) Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences, Eating Disorders: The Journal of Treatment & Prevention, 22:4, 279-291, DOI: 10.1080/10640266.2014.912553 To link to this article: http://dx.doi.org/10.1080/10640266.2014.912553
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Eating Disorders, 22:279–291, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1064-0266 print/1532-530X online DOI: 10.1080/10640266.2014.912553
Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences DAVID CLINTON
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Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Stockholm, Sweden
LINN ALMLÖF, SOFIA LINDSTRÖM, and MOA MANNEBERG Department of Psychology, Stockholm University, Stockholm, Sweden
LENA VESTIN Dala ABC, Falun, Sweden
Lack of patient motivation and dropout are common problems in the treatment of eating disorders. The present study explored patient experiences with open access to specialist eating disorder services through a drop-in program aiming to enable early identification of eating disorders, address motivational problems, and strengthen the therapeutic alliance. Semi-structured qualitative interviews were used to explore the experiences of 11 individuals attending the program. Results suggest that drop-in access may strengthen the therapeutic alliance, motivate engagement in treatment, and reduce dropout. Strengths and weaknesses of the program are discussed and the need for more systematic research is elaborated.
INTRODUCTION There is a need to increase access to programs for the treatment of eating disorders. Many existing specialist services struggle to cope with demand and waiting lists may be long (Tatham, Stringer, Perera, & Waller, 2012). What’s more, only a minority of patients who meet criteria for eating disorders may Address correspondence to David Clinton, Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Norra Stationsgatan 69, 7 Tr., 113 64 Stockholm, Sweden. E-mail: [email protected] 279
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receive mental health care (Hoek & van Hoeken, 2003). Guidelines for the treatment and management of eating disorders emphasize the importance of improving access to services, and that those seeking help “should be assessed and receive treatment at the earliest opportunity” (National Institute for Health Care and Excellent, 2004, p. 8). In the United States the National Eating Disorders Association in collaboration with the Academy for Eating Disorders has been formed to improve access to treatment through the States for Treatment Access and Research program, which focuses on educational work and lobbying legislators (Gregorio, 2009). Given the demand for eating disorder services and the limited supply of treatment resources, work on increasing access to treatment has tended to focus on internet-based solutions, such as cognitive behavioral therapy for bulimia nervosa (Carrard et al., 2011; Graham & Walton, 2011; Ljotsson et al., 2007; Sánchez-Ortiz et al., 2011). However, ensuring that more patients receive adequate help is not merely a question of improving access to services. Even when services are readily available patients will not necessarily utilize them. Non-attendance at outpatient psychiatric clinics generally has been reported to be 36% for new referrals and 40% for follow-ups (Killaspy, Banerjee, King, & Lloyd, 2000). Work by Waller and colleagues (2009) found that among referrals to specialist eating disorder services approximately 35% were never seen, only half of them entered treatment, and merely a quarter reached the end of treatment. A variety of factors may influence eating disorder patients’ propensity to utilize treatment, such as feelings of shame and stigma (Hepworth & Paxton, 2007), incongruent expectations of treatment between patients and therapists (Clinton, 1996), borderline personality disorder (Bell, 2001), demographic variables (Swan-Kremeier et al., 2005), as well as psychosocial factors, traumatic childhood experiences, fear of abandonment, depression and anxiety, social and emotional avoidance, ambivalence about change, and service inflexibility (Leavey, Vallianatou, Johnson-Sabine, Rae, & Gunputh, 2012). Trying and evaluating new ways of providing access to specialist services is important for helping a greater number of individuals with eating disorders and for improving utilization of services once access is provided. Within other areas of mental health services, drop-in programs have been used to increase both access and utilization. This has been done in various forms by allowing prospective patients to simply turn up at designated centers and engage with treatment providers without referrals, prior appointments or commitments to further visits. Drop-in has been used with promising results by voluntary organizations (Hall & Cheston, 2002), in the treatment of substance abusers (Hesse & Pedersen, 2007), the homeless (Magee & Huriaux, 2007), and street sex workers (Gorry, Roen, & Reilly, 2010). Potential advantages of drop-in programs include enhancing motivation through improved access to services, providing an alternative form of support that is easily accessible for patients and increased flexibility in service provision.
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Until now no studies have reported on the use of drop-in services for eating disorders. Such a system of open access to specialist eating disorder services has, however, been successfully developed and implemented in Falun, in central Sweden.
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Program Description The drop-in program is part of the specialist eating disorder services offered at Dala ABC in Falun, Sweden. Dala ABC is a publically funded clinic for patients with eating disorders over 18 years of age operated by Dalarna County Council, and patient charges are minimal. The clinic consists of a 12-member multi-disciplinary team of psychiatric nurses, clinical psychologists, a social worker, and a part-time psychiatrist and physician, who operate an outpatient service for eating disorders. Staff have a wide range of competencies, and offer specialist treatment covering medical, cognitive-behavioral, and psychodynamic components, as well as offering yoga and art therapy. The clinic provides group, day-patient, and individual treatment, and has close collaboration with inpatient facilities when needed. Approximately two-thirds of patients come to the clinic via the drop-in program, with the remainder coming via referrals from other parts of the health service. The aims of the drop-in program are to enable early identification of eating disorders, address motivational difficulties, and strengthen the therapeutic alliance. The drop-in program works in three ways: prospective patients may anonymously attend a specialist interview under no obligation to continue treatment; prospective patients and family members may attend psycho-educational groups without giving prior notice; and finally, prospective patients may choose to attend support groups without engaging in formal treatment. The program operates between 9:00 a.m. and 3:00 p.m. on Tuesdays, Wednesdays, and Thursdays. All members of the treatment team are involved in drop-in work, each one having responsibility for running the work for a half-day once a week. There are no criteria for attendance, and the program is open to any adult who feels a need for the service; they do not need to book an appointment to attend, and their attendance is anonymous with no patient cases notes compiled until they enter formal treatment. The program allows for the assessment of medical stability and means that prospective patients who are ambivalent can approach treatment on their own terms without feeling the pressure of committing to regular treatment. However, nearly all patients who come to the drop-in program go on to take part in the regular, more intensive treatment program at Dala ABC. The present study aimed to explore the possible advantages and disadvantages of drop-in access for specialist treatment of eating disorders. This was done using qualitative analysis of semi-structured interviews exploring participating patients’ experiences of drop-in generally, and specifically in relation to treatment alliance, desire to seek further care, impact on the
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therapeutic process, and the extent to which drop-in helped patients take greater responsibility for treatment.
METHOD
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Participants Eleven eating disorder patients were interviewed (aged 19–34 years, M = 26 years), all of whom were female, from a working or middle class background, living in Falun, and sought help via the drop-in program at Dala ABC. DSM-IV diagnoses, made by trained clinicians at the unit, were anorexia nervosa (n = 3), bulimia nervosa (n = 2), and eating disorder not otherwise specified (n = 6). Duration of illness ranged from 3 to 25 years (M = 11 years). All participants had been attending the program for at least 1 month prior to interview, and were, at the time of interview, involved in regular treatment at Dala ABC.
Interviews A semi-structured interview schedule was constructed for the purposes of the study (an English translation can be provided by the corresponding author). Questions focused on experiences in three primary areas: initial contact with the unit, aspects of the drop-in program, and comparisons with previously experienced forms of service provision.
Procedure All patients who were actively involved in treatment at Dala ABC were informed about the study, either by a letter sent to their homes or personally by treatment staff. Patients who had entered treatment at the unit through the drop-in program were eligible for interview. The unit director contacted patients who were interested in being interviewed and times were booked. Pilot interviews were initially conducted with two patients to refine the interview schedule and provide interviewers with relevant experience. All interviews were audio-taped, and lasted from 40 to 60 minutes each. Informed consent was provided by all participants, and the study met relevant ethical guidelines for research.
Analysis of Interviews Interviews were transcribed and analyzed using inductive thematic analysis (Hayes, 2000). This method involves sorting the interview material in terms of themes, i.e., recurring descriptions to be found in several parts of the
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material relating to experiences of the drop-in program. A vertical analysis was first conducted where each interview was read in its entirety, and keywords and phrases relating to drop-in experiences were coded and sorted. Next, keywords and phrases relating to the same area were organized as preliminary themes. Each theme was then analyzed in order to give it an initial name and definition. Subsequently, a horizontal analysis of the material was conducted across all interviews. This involved examining each previously defined theme across all the interviews to see if the theme was present in other interviews, and in order to see if there were additional keywords or phrases in any of the interviews that could be classified as one of the preliminary themes. This procedure was carried out in relation to all preliminary themes, which meant that the entire transcribed material was read through and analyzed as many times as the number of preliminary themes that had been identified. The last step in the analysis involved finalizing the label and definition attached to each individual theme. Interviews and qualitative analysis were conducted by three of the authors (L.A., M.M., and S.L.). Interviews were conducted by S.L., and transcribed by M.M. and L.A. A first analysis of all 11 interviews was made by M.M., while L.A. made a second independent analysis of all interviews. The two independent analyses of the interviews by M.M. and L.A. were carried out to increase the objectivity and validity of the results. S.L. subsequently summarized the similarities and differences between the two analyses, which were discussed with L.A. and M.M., resulting in a final integrated analysis of the material.
RESULTS The two initial analyses of L.A. and M.M. produced largely similar themes. Themes identified in the first independent analysis by L.A. were: ambivalence—fear, normalization, daring to seek help, welcoming and openness, receiving help when needed, taking responsibility on one’s own terms, as well as the advantages and disadvantages of accessibility. Themes identified in the second independent analysis by M.M. were: ambivalence, anonymity, being seen, hopefulness, normalization, on one’s own terms, accessibility, exchanging experiences, security, as well as worthy of being treated. The final integrated set of themes identified by L.A., M.M., and S.L. together is presented below. Each theme is given a general definition and illustrated and exemplified by quotes from the interviews.
Dealing With Fear Dealing with fear explored coping with anxieties about seeking or receiving help, changing or moving toward recovery.
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Patients described how fears relating to their eating disorder influenced their choice of coming to the drop-in service and how they experienced the service. Several emphasized their long-standing struggle with eating disorders and how frightening “normal” life appeared: Choosing between getting better or not, you feel split between the sick and the healthy world, and the sick world is scared to death of the healthy world.
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It was good to get help, but at the same time the sick thoughts were frightened to death.
Some respondents described fears of being subjected to a long and complicated referral process and how that would influence their propensity to seek help: I was mostly afraid of having to go home again, and hearing “no, you don’t fit in, you’re not ill” or something like that, because that’s how it’s always been before.
Others described fears of not being able to remain anonymous in their previous contacts with the health service and how this aspect of the drop-in service made it easier for them to seek help: I was so nervous about everything, but thought it was such a relief that . . . I didn’t need to tell them who I was. And the first time I was here I felt that everyone who works here doesn’t need to know that it’s me. . . . It was so nice to be able to be completely anonymous.
Some described fears of not being allowed to continue in treatment if they failed to make improvements expected of them, and how the drop-in service helped them deal with these fears: I was so afraid that they would say, “you haven’t made any changes” because that was what I was used to. And because of that they couldn’t help me, but here they’ve never said that.
Accessibility Accessibility explored the positive experience of readily available eating disorder services. Many respondents emphazised the importance of being able to have access to eating disorder services when the need arose, without having an appointment or activity already booked:
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They’re open a lot . . . you can be here a lot. It’s so important for recovery.
Accessibility was particularly important at times of acute distress. Instead of being alone with their worries, respondents emphasized how important it was for them to come to the treatment center and meet others, regardless of whether that be treatment staff or fellow patients:
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If I feel really bad and need someone to talk to or just be left in peace I’ve always got the possibility of coming here, and just sitting here, maybe reading or having a lie down or doing something else.
The accessibility of eating disorder services through drop-in was also seen as being important for establishing treatment motivation and moving toward recovery: [In outpatient services] you go home after your session is finished and just worry. When I come here it feels like I can leave [my worries] behind and that I think about other things. Every time I’ve been here I’ve felt encouraged. You get support and help to get through [your troubles] here.
However, not all aspects of accessibility were positive. The open-door structure of the program meant that it was not always possible to know who you might run into: I thought it was difficult not knowing who would be there. . . . Just imagine if someone I knew was there. If it had been a closed group I would have felt better, more anonymous . . .
Freedom of Choice Freedom of Choice explored being able to choose what aspects of treatment a patient participates in. The freedom of choice offered by the drop-in service in relation to particular treatment components was often seen to be of central importance for motivation: I feel like I decide here. No one forces me. For me that has been so important. Otherwise I might not have been here. I don’t come here because someone else wants me to, but because I want to. . . . There are all sorts of alternatives. I can decide that I want to
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do this or that. It’s not like I’m put into a mold and I’m supposed to do this or that.
Freedom to come and go was emphasized by several respondents: It’s drop-in and I think it’s so nice because I don’t like to feel obligated and have to book things in. If [the times were booked] and I missed a time I’d feel that they were waiting for me, and that would make me feel like I’ve destroyed things for the group, and that I’m so bad because I can’t come.
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The flexibility of dropping in made it easier for patients to involve themselves in treatment: I got to decide myself what I was going to take part in, and that’s never happened before. You can choose pretty much as you like and don’t have to feel as if you have to do certain things. If you come to a place where you feel that you have to take part, that you must, then it’s not on your own terms anymore and [your anxiety] just shouts louder. . . . But just the knowledge that you can go when you please or that you’re there on your on terms makes it easier to deal with.
Need for Security and Confirmation Need for security and confirmation explored expressing the need for feelings of being welcome, finding hope, being seen, and taken seriously, all of which are important for experiencing a sense of trust. Respondents could express experiences of feeling a burden for others, neglected, not listened to or taken seriously. They could describe previous experiences with specialized eating disorder services as reinforcing such feelings. Because the drop-in service meant approaching treatment on their own terms, patients tended to feel welcome and taken seriously, and that this was important for providing a basis for further work: I’ve always felt in the way for others, but here, now they’ve finally got me to understand that it’s okay to get help, it’s okay not to say sorry for existing. It’s a positive experience.
Many felt demoralized after previous failed attempts at recovery on their own, which resulted in feelings of hopelessness. The drop-in program tended to confirm feelings of hope and that change was possible:
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I was at rock bottom . . . had lost everything, but started to find hope when I came here . . . nothing was impossible.
Coming to one of the drop-in open group sessions could strengthen the feeling of having common experiences with others and coming to treatment of one’s own free will:
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[The group] has an easy-going atmosphere. You can come as you are, and don’t have to talk if you don’t want to, and if you want to you can. . . . It feels like everyone knows each other in a friendly way.
Meeting others with similar problems was an important part of the dropin experience that helped to instil feelings of security, as did the possibility of coming to the center and spending time there outside of appointments, even when not participating in activities: Just meeting other girls in the same situation . . . that has given me a lot. You can come here outside the times you have with staff . . . when you feel that things are difficult and need it, that can feel very positive.
Drop-in could also engender feelings of security through a normalizing effect, which meant that they felt less deviant or ill: Here you’re a person with a problem, but you are not a problem. I’ve always felt, regardless of where I’ve been treated, that I’m the problem that has to be fixed, but not here. From always feeling crazy or wrong, like I’m doing things wrong all the time because of my eating disorder, and then being able to come here when you want to and meet others. I don’t know, but you feel like a normal person.
Coming to drop-in anonymously could also engender feelings of security: Just being relatively anonymous . . . and not getting labelled like at the hospital, when you’re there because you’re ill, and it says so on your file and you meet a load of white jackets.
Respondents described how being able to drop-in when the need arises helped them feel secure, and how this could mean that the need for the center was not as great had the possibility of dropping in not been available:
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If I start to feel really bad again there are people I can rely on who will take me back. . . . Now I feel like I don’t need to be afraid that I’ll be standing there alone. If I have a setback then there’s help here.
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DISCUSSION The present study aimed to explore the advantages and disadvantages of drop-in access for specialist eating disorder services. Qualitative interviews were used to investigate experiences of drop-in among 11 eating disorder patients who had come to specialist services via the drop-in program at Dala ABC in Falun, Sweden. Experiences of the drop-in were generally very positive, with few critical comments, despite interviewers’ attempts to encourage respondents to elaborate potential shortcomings of the program. By and large the only negative comments that emerged tended to focus on the openness of the program, which meant that some felt concerned about running into friends or acquaintances who did not know about their eating problems. Four discreet themes emerged in the interviews. Dealing with fear centered on experiences of how drop-in helped patients confront and overcome anxieties relating to their eating disorder or the treatment and recovery process. Accessibility concerned the importance of having readily available access to services. Freedom of choice focused on the importance of being able to choose what aspects of treatment a patient participated in. Finally, Need for security and confirmation centered on the importance of the dropin program for engendering feelings of being welcome, finding hope, and being taken seriously. All four of the above themes were important for increasing treatment motivation. Respondents often reported negative previous experiences of seeking or taking part in treatment. For many, the accessibility of services in the drop-in program, coupled with its non-demanding and open nature generated hope and disconfirmed previous negative health care experiences. Providing access to services on patients’ own terms appeared to engender an important feeling of agency and self-responsibility, being able to influence the course of the disorder on one’s own. Having the opportunity to approach treatment anonymously and meet other sufferers without demands of formally participating in treatment helped respondents to confront and overcome many of the fears they had about treatment. As such, drop-in appeared to strengthen the treatment alliance and respondents’ resolve to move on and engage in more demanding aspects of treatment not covered by the program. Research into drop-in programs within other fields suggests that the potential benefits of such forms of service provision are similar to those found in the present study. Amongst substance abusers Hesse and Pedersen
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(2007) found that having access to staff via drop-in resulted in better attendance and more intensive treatment work among patients. Similarly, drop-in services for homeless women appear to help women to share their experiences with others, feel accepted, and imagine alternative life styles, which increases treatment motivation (Magee and Huriaux, 2007). The importance of being able to approach and engage in treatment on one’s own terms was emphasized by Gorry, Roen, and Reilly (2010) who found that sex workers who sought help at a drop-in center described how strong feelings of internalized negative self-image sensitized them to stigma and fear of being condemned by others, which in turn had led them to shun seeking help previously. If they had previously approached treatment, they tended to experience it negatively if staff actively encouraged them to stay in therapy. Similar sorts of reactions can be seen in anorexia nervosa, where some patients react negatively to active encouragement to stay in treatment. A drop-in program could, therefore, help these women with difficult to treat eating disorders face their fears of treatment and eventually engage in a therapeutic process. Nevertheless, a number of criticisms can be levelled at the present research. The pervasively positive experiences of the drop-in program found in the present interviews could have been due to selection biases, with patients who are positively disposed to the program agreeing to be interviewed. Participants in the present study were all presently engaged in treatment. Arguably, greater variation in points of view could have been found had patients who had completed treatment also been interviewed. Another criticism concerns what could be considered a low number of participants interviewed (N = 11). Although this could be judged to be acceptable in terms of qualitative research, it limits the generalizability of the results. That being said, the procedure used in the present study whereby three researchers independently analyzed the material before establishing consensus about themes could be argued to reduce subjectivity and improve reliability. Overall the present study suggests that drop-in access to specialist services may provide an important complement to existing treatment programs by facilitating patient motivation and the treatment alliance. Nevertheless, important research remains to be done. Qualitative research can provide valuable indications of how patients experience drop-in, but quantitative studies are needed to examine treatment effects and the implications of such services in terms of health economics. It might be argued that drop-in access for specialist services is undesirable since it would create economic and organizational burdens for service providers unable to cope with demands from patients. However, it is entirely possible that the opposite is true and dropin access actually allows for economic savings and reduces organizational burdens by engaging patients earlier, when they are amenable to change and services can have a more pervasive impact. Another possible criticism of
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drop-in services is that they are in danger of recruiting patients who are not suited for the services in question. Although this did not appear to be the case at the unit in question, it could be argued to be a potential problem in other circumstances. Although promising, firmer conclusions about the value of drop-in programs for eating disorders must await further research.
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Magee, C., & Huriaux, E. (2007). Ladies’ night: Evaluating a drop-in program for homeless and marginally housed women in San Francisco’s mission district. International Journal of Drug Policy, 19, 113–121. National Institute for Clinical Excellence. (2004). Eating disorders: Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. London, UK: British Psychological Society. Sánchez-Ortiz, V. C., Munro, C., Stahl, D., House, J., Startup, H., Treasure, J. . . . Schmidt, U. (2011). A randomized controlled trial of Internet-based cognitive behavioral therapy for bulimia nervosa or related disorders in a student population. Psychological Medicine, 41, 407–417. Swan-Kremeier, L. A., Mitchell, J. E., Twardowski, T., Lancaster, K., & Crosby, R. D. (2005). Travel distance and attrition in outpatient eating disorders treatment. International Journal of Eating Disorders, 38, 367–370. Tatham, M., Stringer, H., Perera, S., & Waller, G. (2012). “Do you still want to be seen?”: The pros and cons of active waiting list management. International Journal of Eating Disorders, 45, 57–62. Waller, G., Schmidt, U., Treasure, J., Murray, K., Alenya, J., Emanuelli, F. . . . Yeomans, M. (2009). Problems across care pathways in specialist adult eating disorders services. Psychiatric Bulletin, 33, 26–29.
Eating Disorders: The Journal of Treatment & Prevention Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uedi20
Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences a
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David Clinton , Linn Almlöf , Sofia Lindström , Moa Manneberg & Lena Vestin
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Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Stockholm, Sweden b
Department of Psychology, Stockholm University, Stockholm, Sweden c
Dala ABC, Falun, Sweden Published online: 08 May 2014.
To cite this article: David Clinton, Linn Almlöf, Sofia Lindström, Moa Manneberg & Lena Vestin (2014) Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences, Eating Disorders: The Journal of Treatment & Prevention, 22:4, 279-291, DOI: 10.1080/10640266.2014.912553 To link to this article: http://dx.doi.org/10.1080/10640266.2014.912553
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Eating Disorders, 22:279–291, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1064-0266 print/1532-530X online DOI: 10.1080/10640266.2014.912553
Drop-In Access to Specialist Services for Eating Disorders: A Qualitative Study of Patient Experiences DAVID CLINTON
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Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Stockholm, Sweden
LINN ALMLÖF, SOFIA LINDSTRÖM, and MOA MANNEBERG Department of Psychology, Stockholm University, Stockholm, Sweden
LENA VESTIN Dala ABC, Falun, Sweden
Lack of patient motivation and dropout are common problems in the treatment of eating disorders. The present study explored patient experiences with open access to specialist eating disorder services through a drop-in program aiming to enable early identification of eating disorders, address motivational problems, and strengthen the therapeutic alliance. Semi-structured qualitative interviews were used to explore the experiences of 11 individuals attending the program. Results suggest that drop-in access may strengthen the therapeutic alliance, motivate engagement in treatment, and reduce dropout. Strengths and weaknesses of the program are discussed and the need for more systematic research is elaborated.
INTRODUCTION There is a need to increase access to programs for the treatment of eating disorders. Many existing specialist services struggle to cope with demand and waiting lists may be long (Tatham, Stringer, Perera, & Waller, 2012). What’s more, only a minority of patients who meet criteria for eating disorders may Address correspondence to David Clinton, Resource Centre for Eating Disorders, Centrum för Psykiatriforskning Stockholm (CPF), Karolinska Institute, Norra Stationsgatan 69, 7 Tr., 113 64 Stockholm, Sweden. E-mail: [email protected] 279
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receive mental health care (Hoek & van Hoeken, 2003). Guidelines for the treatment and management of eating disorders emphasize the importance of improving access to services, and that those seeking help “should be assessed and receive treatment at the earliest opportunity” (National Institute for Health Care and Excellent, 2004, p. 8). In the United States the National Eating Disorders Association in collaboration with the Academy for Eating Disorders has been formed to improve access to treatment through the States for Treatment Access and Research program, which focuses on educational work and lobbying legislators (Gregorio, 2009). Given the demand for eating disorder services and the limited supply of treatment resources, work on increasing access to treatment has tended to focus on internet-based solutions, such as cognitive behavioral therapy for bulimia nervosa (Carrard et al., 2011; Graham & Walton, 2011; Ljotsson et al., 2007; Sánchez-Ortiz et al., 2011). However, ensuring that more patients receive adequate help is not merely a question of improving access to services. Even when services are readily available patients will not necessarily utilize them. Non-attendance at outpatient psychiatric clinics generally has been reported to be 36% for new referrals and 40% for follow-ups (Killaspy, Banerjee, King, & Lloyd, 2000). Work by Waller and colleagues (2009) found that among referrals to specialist eating disorder services approximately 35% were never seen, only half of them entered treatment, and merely a quarter reached the end of treatment. A variety of factors may influence eating disorder patients’ propensity to utilize treatment, such as feelings of shame and stigma (Hepworth & Paxton, 2007), incongruent expectations of treatment between patients and therapists (Clinton, 1996), borderline personality disorder (Bell, 2001), demographic variables (Swan-Kremeier et al., 2005), as well as psychosocial factors, traumatic childhood experiences, fear of abandonment, depression and anxiety, social and emotional avoidance, ambivalence about change, and service inflexibility (Leavey, Vallianatou, Johnson-Sabine, Rae, & Gunputh, 2012). Trying and evaluating new ways of providing access to specialist services is important for helping a greater number of individuals with eating disorders and for improving utilization of services once access is provided. Within other areas of mental health services, drop-in programs have been used to increase both access and utilization. This has been done in various forms by allowing prospective patients to simply turn up at designated centers and engage with treatment providers without referrals, prior appointments or commitments to further visits. Drop-in has been used with promising results by voluntary organizations (Hall & Cheston, 2002), in the treatment of substance abusers (Hesse & Pedersen, 2007), the homeless (Magee & Huriaux, 2007), and street sex workers (Gorry, Roen, & Reilly, 2010). Potential advantages of drop-in programs include enhancing motivation through improved access to services, providing an alternative form of support that is easily accessible for patients and increased flexibility in service provision.
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Until now no studies have reported on the use of drop-in services for eating disorders. Such a system of open access to specialist eating disorder services has, however, been successfully developed and implemented in Falun, in central Sweden.
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Program Description The drop-in program is part of the specialist eating disorder services offered at Dala ABC in Falun, Sweden. Dala ABC is a publically funded clinic for patients with eating disorders over 18 years of age operated by Dalarna County Council, and patient charges are minimal. The clinic consists of a 12-member multi-disciplinary team of psychiatric nurses, clinical psychologists, a social worker, and a part-time psychiatrist and physician, who operate an outpatient service for eating disorders. Staff have a wide range of competencies, and offer specialist treatment covering medical, cognitive-behavioral, and psychodynamic components, as well as offering yoga and art therapy. The clinic provides group, day-patient, and individual treatment, and has close collaboration with inpatient facilities when needed. Approximately two-thirds of patients come to the clinic via the drop-in program, with the remainder coming via referrals from other parts of the health service. The aims of the drop-in program are to enable early identification of eating disorders, address motivational difficulties, and strengthen the therapeutic alliance. The drop-in program works in three ways: prospective patients may anonymously attend a specialist interview under no obligation to continue treatment; prospective patients and family members may attend psycho-educational groups without giving prior notice; and finally, prospective patients may choose to attend support groups without engaging in formal treatment. The program operates between 9:00 a.m. and 3:00 p.m. on Tuesdays, Wednesdays, and Thursdays. All members of the treatment team are involved in drop-in work, each one having responsibility for running the work for a half-day once a week. There are no criteria for attendance, and the program is open to any adult who feels a need for the service; they do not need to book an appointment to attend, and their attendance is anonymous with no patient cases notes compiled until they enter formal treatment. The program allows for the assessment of medical stability and means that prospective patients who are ambivalent can approach treatment on their own terms without feeling the pressure of committing to regular treatment. However, nearly all patients who come to the drop-in program go on to take part in the regular, more intensive treatment program at Dala ABC. The present study aimed to explore the possible advantages and disadvantages of drop-in access for specialist treatment of eating disorders. This was done using qualitative analysis of semi-structured interviews exploring participating patients’ experiences of drop-in generally, and specifically in relation to treatment alliance, desire to seek further care, impact on the
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therapeutic process, and the extent to which drop-in helped patients take greater responsibility for treatment.
METHOD
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Participants Eleven eating disorder patients were interviewed (aged 19–34 years, M = 26 years), all of whom were female, from a working or middle class background, living in Falun, and sought help via the drop-in program at Dala ABC. DSM-IV diagnoses, made by trained clinicians at the unit, were anorexia nervosa (n = 3), bulimia nervosa (n = 2), and eating disorder not otherwise specified (n = 6). Duration of illness ranged from 3 to 25 years (M = 11 years). All participants had been attending the program for at least 1 month prior to interview, and were, at the time of interview, involved in regular treatment at Dala ABC.
Interviews A semi-structured interview schedule was constructed for the purposes of the study (an English translation can be provided by the corresponding author). Questions focused on experiences in three primary areas: initial contact with the unit, aspects of the drop-in program, and comparisons with previously experienced forms of service provision.
Procedure All patients who were actively involved in treatment at Dala ABC were informed about the study, either by a letter sent to their homes or personally by treatment staff. Patients who had entered treatment at the unit through the drop-in program were eligible for interview. The unit director contacted patients who were interested in being interviewed and times were booked. Pilot interviews were initially conducted with two patients to refine the interview schedule and provide interviewers with relevant experience. All interviews were audio-taped, and lasted from 40 to 60 minutes each. Informed consent was provided by all participants, and the study met relevant ethical guidelines for research.
Analysis of Interviews Interviews were transcribed and analyzed using inductive thematic analysis (Hayes, 2000). This method involves sorting the interview material in terms of themes, i.e., recurring descriptions to be found in several parts of the
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material relating to experiences of the drop-in program. A vertical analysis was first conducted where each interview was read in its entirety, and keywords and phrases relating to drop-in experiences were coded and sorted. Next, keywords and phrases relating to the same area were organized as preliminary themes. Each theme was then analyzed in order to give it an initial name and definition. Subsequently, a horizontal analysis of the material was conducted across all interviews. This involved examining each previously defined theme across all the interviews to see if the theme was present in other interviews, and in order to see if there were additional keywords or phrases in any of the interviews that could be classified as one of the preliminary themes. This procedure was carried out in relation to all preliminary themes, which meant that the entire transcribed material was read through and analyzed as many times as the number of preliminary themes that had been identified. The last step in the analysis involved finalizing the label and definition attached to each individual theme. Interviews and qualitative analysis were conducted by three of the authors (L.A., M.M., and S.L.). Interviews were conducted by S.L., and transcribed by M.M. and L.A. A first analysis of all 11 interviews was made by M.M., while L.A. made a second independent analysis of all interviews. The two independent analyses of the interviews by M.M. and L.A. were carried out to increase the objectivity and validity of the results. S.L. subsequently summarized the similarities and differences between the two analyses, which were discussed with L.A. and M.M., resulting in a final integrated analysis of the material.
RESULTS The two initial analyses of L.A. and M.M. produced largely similar themes. Themes identified in the first independent analysis by L.A. were: ambivalence—fear, normalization, daring to seek help, welcoming and openness, receiving help when needed, taking responsibility on one’s own terms, as well as the advantages and disadvantages of accessibility. Themes identified in the second independent analysis by M.M. were: ambivalence, anonymity, being seen, hopefulness, normalization, on one’s own terms, accessibility, exchanging experiences, security, as well as worthy of being treated. The final integrated set of themes identified by L.A., M.M., and S.L. together is presented below. Each theme is given a general definition and illustrated and exemplified by quotes from the interviews.
Dealing With Fear Dealing with fear explored coping with anxieties about seeking or receiving help, changing or moving toward recovery.
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Patients described how fears relating to their eating disorder influenced their choice of coming to the drop-in service and how they experienced the service. Several emphasized their long-standing struggle with eating disorders and how frightening “normal” life appeared: Choosing between getting better or not, you feel split between the sick and the healthy world, and the sick world is scared to death of the healthy world.
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It was good to get help, but at the same time the sick thoughts were frightened to death.
Some respondents described fears of being subjected to a long and complicated referral process and how that would influence their propensity to seek help: I was mostly afraid of having to go home again, and hearing “no, you don’t fit in, you’re not ill” or something like that, because that’s how it’s always been before.
Others described fears of not being able to remain anonymous in their previous contacts with the health service and how this aspect of the drop-in service made it easier for them to seek help: I was so nervous about everything, but thought it was such a relief that . . . I didn’t need to tell them who I was. And the first time I was here I felt that everyone who works here doesn’t need to know that it’s me. . . . It was so nice to be able to be completely anonymous.
Some described fears of not being allowed to continue in treatment if they failed to make improvements expected of them, and how the drop-in service helped them deal with these fears: I was so afraid that they would say, “you haven’t made any changes” because that was what I was used to. And because of that they couldn’t help me, but here they’ve never said that.
Accessibility Accessibility explored the positive experience of readily available eating disorder services. Many respondents emphazised the importance of being able to have access to eating disorder services when the need arose, without having an appointment or activity already booked:
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They’re open a lot . . . you can be here a lot. It’s so important for recovery.
Accessibility was particularly important at times of acute distress. Instead of being alone with their worries, respondents emphasized how important it was for them to come to the treatment center and meet others, regardless of whether that be treatment staff or fellow patients:
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If I feel really bad and need someone to talk to or just be left in peace I’ve always got the possibility of coming here, and just sitting here, maybe reading or having a lie down or doing something else.
The accessibility of eating disorder services through drop-in was also seen as being important for establishing treatment motivation and moving toward recovery: [In outpatient services] you go home after your session is finished and just worry. When I come here it feels like I can leave [my worries] behind and that I think about other things. Every time I’ve been here I’ve felt encouraged. You get support and help to get through [your troubles] here.
However, not all aspects of accessibility were positive. The open-door structure of the program meant that it was not always possible to know who you might run into: I thought it was difficult not knowing who would be there. . . . Just imagine if someone I knew was there. If it had been a closed group I would have felt better, more anonymous . . .
Freedom of Choice Freedom of Choice explored being able to choose what aspects of treatment a patient participates in. The freedom of choice offered by the drop-in service in relation to particular treatment components was often seen to be of central importance for motivation: I feel like I decide here. No one forces me. For me that has been so important. Otherwise I might not have been here. I don’t come here because someone else wants me to, but because I want to. . . . There are all sorts of alternatives. I can decide that I want to
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do this or that. It’s not like I’m put into a mold and I’m supposed to do this or that.
Freedom to come and go was emphasized by several respondents: It’s drop-in and I think it’s so nice because I don’t like to feel obligated and have to book things in. If [the times were booked] and I missed a time I’d feel that they were waiting for me, and that would make me feel like I’ve destroyed things for the group, and that I’m so bad because I can’t come.
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The flexibility of dropping in made it easier for patients to involve themselves in treatment: I got to decide myself what I was going to take part in, and that’s never happened before. You can choose pretty much as you like and don’t have to feel as if you have to do certain things. If you come to a place where you feel that you have to take part, that you must, then it’s not on your own terms anymore and [your anxiety] just shouts louder. . . . But just the knowledge that you can go when you please or that you’re there on your on terms makes it easier to deal with.
Need for Security and Confirmation Need for security and confirmation explored expressing the need for feelings of being welcome, finding hope, being seen, and taken seriously, all of which are important for experiencing a sense of trust. Respondents could express experiences of feeling a burden for others, neglected, not listened to or taken seriously. They could describe previous experiences with specialized eating disorder services as reinforcing such feelings. Because the drop-in service meant approaching treatment on their own terms, patients tended to feel welcome and taken seriously, and that this was important for providing a basis for further work: I’ve always felt in the way for others, but here, now they’ve finally got me to understand that it’s okay to get help, it’s okay not to say sorry for existing. It’s a positive experience.
Many felt demoralized after previous failed attempts at recovery on their own, which resulted in feelings of hopelessness. The drop-in program tended to confirm feelings of hope and that change was possible:
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I was at rock bottom . . . had lost everything, but started to find hope when I came here . . . nothing was impossible.
Coming to one of the drop-in open group sessions could strengthen the feeling of having common experiences with others and coming to treatment of one’s own free will:
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[The group] has an easy-going atmosphere. You can come as you are, and don’t have to talk if you don’t want to, and if you want to you can. . . . It feels like everyone knows each other in a friendly way.
Meeting others with similar problems was an important part of the dropin experience that helped to instil feelings of security, as did the possibility of coming to the center and spending time there outside of appointments, even when not participating in activities: Just meeting other girls in the same situation . . . that has given me a lot. You can come here outside the times you have with staff . . . when you feel that things are difficult and need it, that can feel very positive.
Drop-in could also engender feelings of security through a normalizing effect, which meant that they felt less deviant or ill: Here you’re a person with a problem, but you are not a problem. I’ve always felt, regardless of where I’ve been treated, that I’m the problem that has to be fixed, but not here. From always feeling crazy or wrong, like I’m doing things wrong all the time because of my eating disorder, and then being able to come here when you want to and meet others. I don’t know, but you feel like a normal person.
Coming to drop-in anonymously could also engender feelings of security: Just being relatively anonymous . . . and not getting labelled like at the hospital, when you’re there because you’re ill, and it says so on your file and you meet a load of white jackets.
Respondents described how being able to drop-in when the need arises helped them feel secure, and how this could mean that the need for the center was not as great had the possibility of dropping in not been available:
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If I start to feel really bad again there are people I can rely on who will take me back. . . . Now I feel like I don’t need to be afraid that I’ll be standing there alone. If I have a setback then there’s help here.
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DISCUSSION The present study aimed to explore the advantages and disadvantages of drop-in access for specialist eating disorder services. Qualitative interviews were used to investigate experiences of drop-in among 11 eating disorder patients who had come to specialist services via the drop-in program at Dala ABC in Falun, Sweden. Experiences of the drop-in were generally very positive, with few critical comments, despite interviewers’ attempts to encourage respondents to elaborate potential shortcomings of the program. By and large the only negative comments that emerged tended to focus on the openness of the program, which meant that some felt concerned about running into friends or acquaintances who did not know about their eating problems. Four discreet themes emerged in the interviews. Dealing with fear centered on experiences of how drop-in helped patients confront and overcome anxieties relating to their eating disorder or the treatment and recovery process. Accessibility concerned the importance of having readily available access to services. Freedom of choice focused on the importance of being able to choose what aspects of treatment a patient participated in. Finally, Need for security and confirmation centered on the importance of the dropin program for engendering feelings of being welcome, finding hope, and being taken seriously. All four of the above themes were important for increasing treatment motivation. Respondents often reported negative previous experiences of seeking or taking part in treatment. For many, the accessibility of services in the drop-in program, coupled with its non-demanding and open nature generated hope and disconfirmed previous negative health care experiences. Providing access to services on patients’ own terms appeared to engender an important feeling of agency and self-responsibility, being able to influence the course of the disorder on one’s own. Having the opportunity to approach treatment anonymously and meet other sufferers without demands of formally participating in treatment helped respondents to confront and overcome many of the fears they had about treatment. As such, drop-in appeared to strengthen the treatment alliance and respondents’ resolve to move on and engage in more demanding aspects of treatment not covered by the program. Research into drop-in programs within other fields suggests that the potential benefits of such forms of service provision are similar to those found in the present study. Amongst substance abusers Hesse and Pedersen
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(2007) found that having access to staff via drop-in resulted in better attendance and more intensive treatment work among patients. Similarly, drop-in services for homeless women appear to help women to share their experiences with others, feel accepted, and imagine alternative life styles, which increases treatment motivation (Magee and Huriaux, 2007). The importance of being able to approach and engage in treatment on one’s own terms was emphasized by Gorry, Roen, and Reilly (2010) who found that sex workers who sought help at a drop-in center described how strong feelings of internalized negative self-image sensitized them to stigma and fear of being condemned by others, which in turn had led them to shun seeking help previously. If they had previously approached treatment, they tended to experience it negatively if staff actively encouraged them to stay in therapy. Similar sorts of reactions can be seen in anorexia nervosa, where some patients react negatively to active encouragement to stay in treatment. A drop-in program could, therefore, help these women with difficult to treat eating disorders face their fears of treatment and eventually engage in a therapeutic process. Nevertheless, a number of criticisms can be levelled at the present research. The pervasively positive experiences of the drop-in program found in the present interviews could have been due to selection biases, with patients who are positively disposed to the program agreeing to be interviewed. Participants in the present study were all presently engaged in treatment. Arguably, greater variation in points of view could have been found had patients who had completed treatment also been interviewed. Another criticism concerns what could be considered a low number of participants interviewed (N = 11). Although this could be judged to be acceptable in terms of qualitative research, it limits the generalizability of the results. That being said, the procedure used in the present study whereby three researchers independently analyzed the material before establishing consensus about themes could be argued to reduce subjectivity and improve reliability. Overall the present study suggests that drop-in access to specialist services may provide an important complement to existing treatment programs by facilitating patient motivation and the treatment alliance. Nevertheless, important research remains to be done. Qualitative research can provide valuable indications of how patients experience drop-in, but quantitative studies are needed to examine treatment effects and the implications of such services in terms of health economics. It might be argued that drop-in access for specialist services is undesirable since it would create economic and organizational burdens for service providers unable to cope with demands from patients. However, it is entirely possible that the opposite is true and dropin access actually allows for economic savings and reduces organizational burdens by engaging patients earlier, when they are amenable to change and services can have a more pervasive impact. Another possible criticism of
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drop-in services is that they are in danger of recruiting patients who are not suited for the services in question. Although this did not appear to be the case at the unit in question, it could be argued to be a potential problem in other circumstances. Although promising, firmer conclusions about the value of drop-in programs for eating disorders must await further research.
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