A Case for Student Run Self-Help Groups
Introduction
Eating disorders such as Anorexia Nervosa (AN) and Bulimia Nervosa (BN) are debilitating mental illnesses. They can be chronic, recurrent mental disorders and as such they “place considerable burdens on the health care system” [1] . AN is seen as “a syndrome in which the individual maintains a low weight as a result of a pre-occupation with body weight.” [1] BN is recognised as “binge eating and inappropriate compensatory methods to prevent weight gain.” [2] Despite their physical and behavioural elements, these disorders are recognised as having core psychological elements. AN is associated with “social withdrawal, rigidity and obsessionality,” and is commonly linked to secondary difficulties including social isolation and compromise of educational and employment plans. [1] The NICE guidelines summarise the psychological issues related to eating disorders and the impact that these have upon quality of life.
“Emotional disturbance is common, chiefly comprising anxiety and mood symptoms. With time, emotional difficulties usually increase along with a range of physical and social difficulties, including becoming unable to care for oneself adequately, reducing or stopping leisure activities, interrupting educational goals and losing personal autonomy. These affect a person’s quality of life and increase the reliance on and the importance of the eating disorder.” [1]
Incidence and Prevalence
Incidence is understood to be the number of new cases in a population over a specific period time, usually one year and is thus given as the prevalence per 100,000 of the population per year. Prevalence is the total number of cases in a population.
Data on the incidence and prevalence of eating disorders must be viewed with considerable care as there is a paucity of data to which exploration of incidence and prevalence can refer. Incidence rates are based on cases presented to healthcare facilities which “will grossly underestimate the incidence in the community because not all subjects will be referred to (mental) heath care.” [3] The most thorough review of this data was conducted by Hoek and van Hoeken in 2003. Due to lack of data however, this study was only able to consider cases of AN and BN which met strict definitions as defined by the American Psychiatric Association. The study was unable to consider Eating Disorders Not Otherwise Specified (EDNOS). This is the most common form of eating disorder encountered by health care professionals in routine clinical practice, [4] and is a particularly common diagnosis when treating adolescents who often do not report one or more of the clinical features of BN or AN. (Commission on Adolescent Eating Disorders, 2005). As we are considering eating disorders in the student population, inability to consider EDNOS suggests that the incidence and prevalence rates calculated by Hoek and van Hoeken are likely to substantially underestimate the occurrence of eating disorders amongst the student population.
Hoek and van Hoeken summarise their estimations of the number of individuals with AN and BN in the community, primary care and mental health care:
Introduction
Eating disorders such as Anorexia Nervosa (AN) and Bulimia Nervosa (BN) are debilitating mental illnesses. They can be chronic, recurrent mental disorders and as such they “place considerable burdens on the health care system” [1] . AN is seen as “a syndrome in which the individual maintains a low weight as a result of a pre-occupation with body weight.” [1] BN is recognised as “binge eating and inappropriate compensatory methods to prevent weight gain.” [2] Despite their physical and behavioural elements, these disorders are recognised as having core psychological elements. AN is associated with “social withdrawal, rigidity and obsessionality,” and is commonly linked to secondary difficulties including social isolation and compromise of educational and employment plans. [1] The NICE guidelines summarise the psychological issues related to eating disorders and the impact that these have upon quality of life.
“Emotional disturbance is common, chiefly comprising anxiety and mood symptoms. With time, emotional difficulties usually increase along with a range of physical and social difficulties, including becoming unable to care for oneself adequately, reducing or stopping leisure activities, interrupting educational goals and losing personal autonomy. These affect a person’s quality of life and increase the reliance on and the importance of the eating disorder.” [1]
Incidence and Prevalence
Incidence is understood to be the number of new cases in a population over a specific period time, usually one year and is thus given as the prevalence per 100,000 of the population per year. Prevalence is the total number of cases in a population.
Data on the incidence and prevalence of eating disorders must be viewed with considerable care as there is a paucity of data to which exploration of incidence and prevalence can refer. Incidence rates are based on cases presented to healthcare facilities which “will grossly underestimate the incidence in the community because not all subjects will be referred to (mental) heath care.” [3] The most thorough review of this data was conducted by Hoek and van Hoeken in 2003. Due to lack of data however, this study was only able to consider cases of AN and BN which met strict definitions as defined by the American Psychiatric Association. The study was unable to consider Eating Disorders Not Otherwise Specified (EDNOS). This is the most common form of eating disorder encountered by health care professionals in routine clinical practice, [4] and is a particularly common diagnosis when treating adolescents who often do not report one or more of the clinical features of BN or AN. (Commission on Adolescent Eating Disorders, 2005). As we are considering eating disorders in the student population, inability to consider EDNOS suggests that the incidence and prevalence rates calculated by Hoek and van Hoeken are likely to substantially underestimate the occurrence of eating disorders amongst the student population.
Hoek and van Hoeken summarise their estimations of the number of individuals with AN and BN in the community, primary care and mental health care:
1-year period prevalence rates per 100,000 young females at different levels of care
The report further notes that the “incidence rates for anorexia nervosa are highest for females in the 15 – 19 age group. This age group constitutes approximately 40% of all identified cases.”
[3]
As incidence rates represent the situation at the moment of detection, a high incident rate among the 15 – 19 age group implies that a considerable proportion of individuals with anorexia nervosa will be in their late teens and early twenties, thus of comparable age to the standard university student.
The incident rate for Bulimia Nervosa is highest for 20 to 24 year olds and within this age range is approximately 82.5 per 100,000 of the population per year [5-6] .
A study has been conducted providing data regarding the number of university students attending an eating disorder service over the space of three years (between January 2002 and December 2005). This study found that over this time span 182 individuals attending the service were university students. This constituted nearly a quarter of all the patients attending the service. [7]
Hoek and van Hoeken conclude their study warning that,
“Whereas eating disorders are rare in the general population, they are relatively common among adolescent girls and young women. Unfortunately, only a minority of the people who meet stringent diagnostic criteria for eating disorders receive mental health care. This means that the majority of persons with a severe eating disorder lack adequate treatment.” [3]
We can thus summarise that, though eating disorders are not common, they are most prevalent amongst women in the late teens and early twenties, indicating that there may be considerable demand for eating disorder services amongst the student population.
Course of Illness
Eating disorders are understood to have a chronic course. Reviews of outcome of BN and AN consisting of 5,653 and 5,590 patients respectively, estimated that over time close to 45% of patients with BN and 47% of patients with AN make a full recovery. [8-9] This indicates that though there have been advances in treatment over half of patients with eating disorders do not make a full recovery. In view of this it has been stressed that “prevention of chronicity must be a paramount objective.” [10]
Further to low recovery rates, the mortality rate for AN is estimated to be almost 18-fold higher than morality in the general population. It is accepted that recovery is not easy. Remission from bulimia is “often fleeting and relapse is common.” [11] In the face of “lapses” and “ambivalence that can flare up with a vengeance throughout recovery”, it is important to help individuals stay focused and “remember that recovery is possible and there are people who want to help overcome the disorder.” [1]
Treatment
While the development of CBT-BN [12] has provided a standard model of evidence based treatment for BN, evidence for successful treatment for AN is lacking. This is in part due to considerable heterogeneity in the disorder. It is also likely to relate to ambivalence observed in patients, and a reluctance to engage in treatment and maintain motivation through treatment. An additional concern here is the difficulty individuals have accessing treatment due to a lack of specialist service provision.
Accessing treatment
The NICE (2004) guidelines acknowledge that the main obstacle to diagnosis is an individual’s “own willingness or otherwise to disclose his or her motives, symptoms and behaviours.” The report notes that studies from the US and continental Europe suggest that “only a fraction of people with eating disorders receive specialised treatment” for eating disorders. The report cautions that over the five years prior to a diagnosis, these individuals will consult their GP “significantly more frequently than [individuals] without an eating disorder.” This indicates that there are “high levels of hidden eating disorder morbidity at primary care level leading to a considerable underestimate of cost.” [1]
It would thus seem both beneficial and cost effective to identify individuals with eating disorders early and provide treatment at this early stage. The question is then how to improve the access to services for individuals with eating disorders.
The Royal College of Psychiatrists note that students often experience difficulty accessing NHS services. They indicate that primary health care services are sometimes not organised to meet the mental health needs of students. “There may be a lack of coordination between home and college GPs with failures of communication compounding the student’s difficulties.” [13] There is evidence suggesting that “many students choose not to disclose their psychiatric problems for fear of prejudging their chances of selection for higher education.” With regards to primary health care, students with eating disorders face an additional hurdle as GPs do not always have experience of working with eating disorders. The NICE guidelines acknowledge that “it can be difficult, if not impossible, to lean about the range of treatment options and services if the GP lacks experience of working with eating disorders.” [1]
Access to the secondary mental health services, acknowledged to be usually necessary in the treatment of AN [1] , can be even more difficult. [13] The Royal College of Psychiatrists note that “in some cases, the student’s psychiatric disorder might not be perceived as severe enough to achieve the prescribed threshold for access to the local mental health service.” This is an enormous set back for a population ambivalent about acknowledging their problems or requesting help.
Once a referral is accepted there is often a further delay; long waiting periods for access to specialised NHS psychological treatment services are a particular problem. [13] The NICE (2004) guidelines acknowledge that,
“The time-lag between raising the issue, getting a diagnosis and accessing treatment can leave the person with an eating disorder feeling ‘let-down’ or rejected and compound feelings of unworthiness after having found the courage to speak out. Any delay also provides the opportunity for ‘ambivalence’ to creep back in again – the person may then ask: ‘Do I really want this treatment anyway?’” [1]
Treatment
Outpatient treatment is recommended for both AN and BN, though it is acknowledged that inpatient treatment may be necessary on occasions [1]. Data from prospective naturalistic studies has been noted to suggest that hospitalisation maybe negatively related to health at follow-up; it has thus been suggested that there are disadvantages to disrupted continuity of care and separation from the natural environment. [14]
Self-help and CBT-BN [12] are recommended for treatment of BN [1] . NICE indicate that there is good evidence to support the use of CBT-BN. In contrast there is minimal evidence to support any treatment strategy for AN. Reviewing the literature on treatment for eating disorders it was noted that in 20 years, only 15 comparative trials for treatment of AN had been completed and published, suggesting that the “challenges to the identification of evidence-based treatments for AN are formidable.” [10]
Conclusion
It thus appears that there are weaknesses in treatments for eating disorders, both in accessing treatment and success of delivery of treatment. Ambivalence and lack of motivation to engage in recovery compound problems in both of these situations.
Economics
Very little research has been conducted on the cost of eating disorders. The Office of Health Economics conducted a calculation of the total cost of AN in primary care in 1994. This estimated that approximately 47,000 individuals consulted their GP with AN each year, yielding an estimated cost of £580,000 for primary care in 1991 prices [1] . This would be close to £ 1,000,000 in current prices.
Beyond the cost to primary health care services, the substantial impact on social functioning, including occupational and educational impairment ought to be considered. NICE note that this impairment is compounded by eating disorders affecting individuals during secondary school, higher education and at the beginning of their working careers. [1] The only comprehensive study considering the loss of productivity was conducted in Germany in 1998. This indicated that lost productivity costs of AN were estimated to be 130.4 million Euros for the 82 million German population. The indirect burden of BN was estimated at around 113.9 million Euros. [1]
Working with students
The Royal College of Psychiatrists conducted a review into the state of student mental health, published in 2003. This report indicated that the experience of being a university student was both beneficial and stressful. The report highlighted that the demand for psychological support is not uniformly met.
Higher education was acknowledged to have an important role in “enabling people with established psychiatric problems to develop their personal, social and intellectual potential, and thereby to make a productive contribution to society.” In some cases entry to higher education can form an “important part of a patient’s recovery from psychiatric illness.” More generally higher education can provide the opportunity for “learning in a constructive and stimulating environment [which] can enhance self-confidence and a sense of achievement, particularly if it leads to tangible rewards such as fulfilling employment.” Such an environment may also “promote socialisation, independence and self-reliance.” [13]
The report notes that of important consideration for working with students with eating disorders, some of the valuable benefits of higher education are the “exploration of sexuality and intimacy”, a chance for challenges to be “addressed and resolved” and for “identities [to be] formed.” [13] Given our understanding of the psychological issues that can underlie eating disorders, including a fear of uncertainty, avoidance of sexuality and a lack of sense of identity, it is likely that students with eating disorders will need additional support to engage in or benefit from experiences that are identified as being of value.
Though the benefits of the university environment are clear, there are many associated stresses and a strong indication that students with eating disorders will need additional support.
The Royal College of Psychiatrists note an increase in the number of student presenting with more severe mental health problems. University is associated with “significant stressors, including emotional demands of transition from home and school to the less structured environment of college, independent study and examinations, and financial pressures... The stresses associated with university might exacerbate pre-existing emotional and psychiatric problems in some students, and precipitate disorders in others.” [13]
The report highlights that narrowing of access to mental health services has coincided with increased pressure on university resources. While vulnerable students “might need higher levels of support in order to achieve their potential,” “academic and pastoral support from staff may be more difficult to access now.” This results in increasing numbers of students turning to university counselling services. These services are “often having to manage a growing volume of demand for counselling, and an increase in the severity of the psychological problems students present, with limited resources.”
Considering self help
When considering the gaps in service provision, self help groups may prove to be a useful service to provide a bridge between different services and a stepping stone into services. Self help groups offer easily accessible support, removing many of the obstacles currently causing problems for access to more specialised services.
Students have a tendency to “confide in and seek help from peers.” Some students also show reluctance to access counselling services, potentially due to the stigma attached to mental health issues. [13] The Royal College of Psychiatrists thus suggests that as students often turn in the first instance to other students for support, it may be beneficial to make expertise available to support student-led services.
Student-run self help groups offer an unintimidating framework for support and can be used as a first step in access of support. They are able to offer individuals the encouragement and motivation they may need to seek formal support. They are also able to offer support without referral or diagnosis, meaning that support is available regardless of severity of illness.
To allow self help groups to function as effectively as possible in supporting health care in general, it will be beneficial for groups to establish links with local mental health services. These may be able to facilitate the referral process of group attendees where appropriate.
Beyond offering a role as a form of security net, there are indications that peer-to-peer support in the form of a self help group can have wider benefits for supporting recovery in eating disorders. The NICE (2004) guidelines suggest that “Informal supportive social relationships outside the treatment setting... have been identified as important in recovery.” The social toll of eating disorders is indicated to be as “disruptive to healthy psychological development as the biological toll is to physical development.” [15] Positive social adjustment and close social relationships are indentified to increase the likelihood of recovery [9] . Self help groups, due to their peer-to-peer nature can help increase social confidence and build self-esteem. They can allow students to discuss issues that they would not be comfortable discussing with friends, which can help generate strategies to make social interaction easier and more rewarding. In summary, peer-run self help groups take a step towards meeting the recommendation of strengthening social networks and social support made by the Royal College of Psychiatrists’’ report [13] .
In review of the practical use of self help groups, the NICE (2004) guidelines note that, “surveys of self-help groups suggest that they are regarded by the majority of attendees as helpful, being positively associated with social involvement and supportive sharing.” They suggest that:
“Given that self-help groups do quite well on very or fairly helpful ratings, the fact that self-help group users tend to use other professional services, and the finding that supportive social relationships outside formal treatment settings are associated with recovery, it seems more could be possible in terms of integrated working between statutory and voluntary services / agencies.” [1]
So there seems to be recommendations from both NICE guidelines and the 2003 report by the Royal College of Psychiatrists, suggesting that it may be beneficial to explore further the use of self help groups. It is clear that access to services for students with eating disorders is problematic so it seems sensible to provide a form of “security net” to ensure that students continue to receive support while in the process of transition between services or as they access services for the first time. The social setting of a self help group has further benefits for supporting recovery in the long term, and would seem to provide a low cost offer source of long term user-led support to help individuals maintain motivation through the ups and downs of recovery.
What can existing studies tell us about how best to provide this support?
There has been very little research exploring the use of self help groups to support individuals with eating disorders. There has been recently, however, increasing interest in using self help or guided self help techniques. The 2009 Cochrane review into self help and guided self help techniques indicated that these techniques may produce comparable outcomes to formal therapist-delivered psychological therapies. Guided self help works by a therapist leading self help groups, and thus differ significantly from the ethos of a peer-to-peer support group. This shift towards exploration of self help techniques, however, reflects the need to “bridge the gap” where “specialist treatment is not always easily accessible.” [16]
In line with the paucity of data on the use of self help groups, the 2009 Cochrane review notes that we need “large well-conducted effectiveness studies in self-help treatments with or without guidance incorporating cost evaluations and investigation of different types of self-help in different populations and settings.” [16]
A study was published in 1987 which reviewed the outcome of running a self help group for 6 months. The group had open membership and sessions were run by a social worker or psychologist. This suggests that different professionals ran each session. A questionnaire was sent to 25 regular attendees at the end of the 6 months. 18 of these individuals responded. 78% of the members reported finding the group helpful, citing that it was beneficial in “decreasing feelings of uniqueness.” One woman responded that “the group helped me feel that I was not a bad person, and I realised I was not alone or a freak.” Individuals reported feeling that the “group was a place where members... could openly discuss their eating disorder, something they could not do with their family or friends.” 17 of the 18 individuals who responded felt that there was a need to have a professional leader attend the group. 84% felt that there should have been more structure in the group. [17]
This suggests that while groups can be beneficial they need to be well led and follow a clear structure. It may be that the regular changes in group leaders which this project seems to have had, contributed in some degree to the attendees’ feeling of a need for more structure.
The NICE (2004) guidelines note that while groups can be positive, they can be experienced by some individuals as upsetting or promoting competitiveness in terms of weight loss and eating disorders behaviours. This further suggests that groups need to be well led and well structured. It is for this reason that we believe that the network of self help groups that the SRSH project would facilitate will be of considerable benefit. The project can ensure that group facilitators are thoroughly trained to understand how to minimise any upset or competitiveness that could arise in a group setting. The project can also ensure that group facilitators are supervised to ensure that this training is maintained and that the group facilitators are supported in their role.
Conclusions
The incidence and prevalence rates of eating disorders are highest amongst the student age group. It is further understood that though university brings valued benefits and can act as a tool to facilitate a change in life towards recovery, the environment can bring additional stresses. Thus it seems imperative to ensure that university students are able to access support for eating disorders. Similarly, if we are determined to work towards reducing the prevalence of eating disorders, providing support early and facilitating students with eating disorders to live more normal lives ought to be considered. It is recognised that there are problems accessing primary and secondary services. It is further accepted that patients are often ambivalent about recovery, can lack motivation and experience recovery as a journey with many lapses and set-backs along the way. Eating disorders are also understood to have a considerable social toll on individuals, who may end up feeling isolated and alone with their problems. Peer run self help groups thus seem well placed to offer easily accessible and unintimidating support which can provide continuing motivation through recovery. These groups may be well placed to encourage individuals into formal support and act as an “add on” to break the social isolation that can be experienced as individuals work through recovery with formal support.
From the limited research that has been conducted into self help groups it seems that there is a benefit to having a good structure and formal leadership. The SRSH project is well positioned to ensure both of these. It seems that it would be beneficial for groups to establish links with mental health services. These links could both facilitate referral processes when appropriate and may offer scope for professionals to attend occasional sessions to give additional supportive input to the group setting.
Finally the development of these groups falls in line with a developing preference for user-led services, placing the individuals attending the group sessions in control of the sessions. This self-help framework is beneficial in allowing individuals to see themselves as drivers of their recovery and can encourage individuals to be more proactive and motivated.
The incident rate for Bulimia Nervosa is highest for 20 to 24 year olds and within this age range is approximately 82.5 per 100,000 of the population per year [5-6] .
A study has been conducted providing data regarding the number of university students attending an eating disorder service over the space of three years (between January 2002 and December 2005). This study found that over this time span 182 individuals attending the service were university students. This constituted nearly a quarter of all the patients attending the service. [7]
Hoek and van Hoeken conclude their study warning that,
“Whereas eating disorders are rare in the general population, they are relatively common among adolescent girls and young women. Unfortunately, only a minority of the people who meet stringent diagnostic criteria for eating disorders receive mental health care. This means that the majority of persons with a severe eating disorder lack adequate treatment.” [3]
We can thus summarise that, though eating disorders are not common, they are most prevalent amongst women in the late teens and early twenties, indicating that there may be considerable demand for eating disorder services amongst the student population.
Course of Illness
Eating disorders are understood to have a chronic course. Reviews of outcome of BN and AN consisting of 5,653 and 5,590 patients respectively, estimated that over time close to 45% of patients with BN and 47% of patients with AN make a full recovery. [8-9] This indicates that though there have been advances in treatment over half of patients with eating disorders do not make a full recovery. In view of this it has been stressed that “prevention of chronicity must be a paramount objective.” [10]
Further to low recovery rates, the mortality rate for AN is estimated to be almost 18-fold higher than morality in the general population. It is accepted that recovery is not easy. Remission from bulimia is “often fleeting and relapse is common.” [11] In the face of “lapses” and “ambivalence that can flare up with a vengeance throughout recovery”, it is important to help individuals stay focused and “remember that recovery is possible and there are people who want to help overcome the disorder.” [1]
Treatment
While the development of CBT-BN [12] has provided a standard model of evidence based treatment for BN, evidence for successful treatment for AN is lacking. This is in part due to considerable heterogeneity in the disorder. It is also likely to relate to ambivalence observed in patients, and a reluctance to engage in treatment and maintain motivation through treatment. An additional concern here is the difficulty individuals have accessing treatment due to a lack of specialist service provision.
Accessing treatment
The NICE (2004) guidelines acknowledge that the main obstacle to diagnosis is an individual’s “own willingness or otherwise to disclose his or her motives, symptoms and behaviours.” The report notes that studies from the US and continental Europe suggest that “only a fraction of people with eating disorders receive specialised treatment” for eating disorders. The report cautions that over the five years prior to a diagnosis, these individuals will consult their GP “significantly more frequently than [individuals] without an eating disorder.” This indicates that there are “high levels of hidden eating disorder morbidity at primary care level leading to a considerable underestimate of cost.” [1]
It would thus seem both beneficial and cost effective to identify individuals with eating disorders early and provide treatment at this early stage. The question is then how to improve the access to services for individuals with eating disorders.
The Royal College of Psychiatrists note that students often experience difficulty accessing NHS services. They indicate that primary health care services are sometimes not organised to meet the mental health needs of students. “There may be a lack of coordination between home and college GPs with failures of communication compounding the student’s difficulties.” [13] There is evidence suggesting that “many students choose not to disclose their psychiatric problems for fear of prejudging their chances of selection for higher education.” With regards to primary health care, students with eating disorders face an additional hurdle as GPs do not always have experience of working with eating disorders. The NICE guidelines acknowledge that “it can be difficult, if not impossible, to lean about the range of treatment options and services if the GP lacks experience of working with eating disorders.” [1]
Access to the secondary mental health services, acknowledged to be usually necessary in the treatment of AN [1] , can be even more difficult. [13] The Royal College of Psychiatrists note that “in some cases, the student’s psychiatric disorder might not be perceived as severe enough to achieve the prescribed threshold for access to the local mental health service.” This is an enormous set back for a population ambivalent about acknowledging their problems or requesting help.
Once a referral is accepted there is often a further delay; long waiting periods for access to specialised NHS psychological treatment services are a particular problem. [13] The NICE (2004) guidelines acknowledge that,
“The time-lag between raising the issue, getting a diagnosis and accessing treatment can leave the person with an eating disorder feeling ‘let-down’ or rejected and compound feelings of unworthiness after having found the courage to speak out. Any delay also provides the opportunity for ‘ambivalence’ to creep back in again – the person may then ask: ‘Do I really want this treatment anyway?’” [1]
Treatment
Outpatient treatment is recommended for both AN and BN, though it is acknowledged that inpatient treatment may be necessary on occasions [1]. Data from prospective naturalistic studies has been noted to suggest that hospitalisation maybe negatively related to health at follow-up; it has thus been suggested that there are disadvantages to disrupted continuity of care and separation from the natural environment. [14]
Self-help and CBT-BN [12] are recommended for treatment of BN [1] . NICE indicate that there is good evidence to support the use of CBT-BN. In contrast there is minimal evidence to support any treatment strategy for AN. Reviewing the literature on treatment for eating disorders it was noted that in 20 years, only 15 comparative trials for treatment of AN had been completed and published, suggesting that the “challenges to the identification of evidence-based treatments for AN are formidable.” [10]
Conclusion
It thus appears that there are weaknesses in treatments for eating disorders, both in accessing treatment and success of delivery of treatment. Ambivalence and lack of motivation to engage in recovery compound problems in both of these situations.
Economics
Very little research has been conducted on the cost of eating disorders. The Office of Health Economics conducted a calculation of the total cost of AN in primary care in 1994. This estimated that approximately 47,000 individuals consulted their GP with AN each year, yielding an estimated cost of £580,000 for primary care in 1991 prices [1] . This would be close to £ 1,000,000 in current prices.
Beyond the cost to primary health care services, the substantial impact on social functioning, including occupational and educational impairment ought to be considered. NICE note that this impairment is compounded by eating disorders affecting individuals during secondary school, higher education and at the beginning of their working careers. [1] The only comprehensive study considering the loss of productivity was conducted in Germany in 1998. This indicated that lost productivity costs of AN were estimated to be 130.4 million Euros for the 82 million German population. The indirect burden of BN was estimated at around 113.9 million Euros. [1]
Working with students
The Royal College of Psychiatrists conducted a review into the state of student mental health, published in 2003. This report indicated that the experience of being a university student was both beneficial and stressful. The report highlighted that the demand for psychological support is not uniformly met.
Higher education was acknowledged to have an important role in “enabling people with established psychiatric problems to develop their personal, social and intellectual potential, and thereby to make a productive contribution to society.” In some cases entry to higher education can form an “important part of a patient’s recovery from psychiatric illness.” More generally higher education can provide the opportunity for “learning in a constructive and stimulating environment [which] can enhance self-confidence and a sense of achievement, particularly if it leads to tangible rewards such as fulfilling employment.” Such an environment may also “promote socialisation, independence and self-reliance.” [13]
The report notes that of important consideration for working with students with eating disorders, some of the valuable benefits of higher education are the “exploration of sexuality and intimacy”, a chance for challenges to be “addressed and resolved” and for “identities [to be] formed.” [13] Given our understanding of the psychological issues that can underlie eating disorders, including a fear of uncertainty, avoidance of sexuality and a lack of sense of identity, it is likely that students with eating disorders will need additional support to engage in or benefit from experiences that are identified as being of value.
Though the benefits of the university environment are clear, there are many associated stresses and a strong indication that students with eating disorders will need additional support.
The Royal College of Psychiatrists note an increase in the number of student presenting with more severe mental health problems. University is associated with “significant stressors, including emotional demands of transition from home and school to the less structured environment of college, independent study and examinations, and financial pressures... The stresses associated with university might exacerbate pre-existing emotional and psychiatric problems in some students, and precipitate disorders in others.” [13]
The report highlights that narrowing of access to mental health services has coincided with increased pressure on university resources. While vulnerable students “might need higher levels of support in order to achieve their potential,” “academic and pastoral support from staff may be more difficult to access now.” This results in increasing numbers of students turning to university counselling services. These services are “often having to manage a growing volume of demand for counselling, and an increase in the severity of the psychological problems students present, with limited resources.”
Considering self help
When considering the gaps in service provision, self help groups may prove to be a useful service to provide a bridge between different services and a stepping stone into services. Self help groups offer easily accessible support, removing many of the obstacles currently causing problems for access to more specialised services.
Students have a tendency to “confide in and seek help from peers.” Some students also show reluctance to access counselling services, potentially due to the stigma attached to mental health issues. [13] The Royal College of Psychiatrists thus suggests that as students often turn in the first instance to other students for support, it may be beneficial to make expertise available to support student-led services.
Student-run self help groups offer an unintimidating framework for support and can be used as a first step in access of support. They are able to offer individuals the encouragement and motivation they may need to seek formal support. They are also able to offer support without referral or diagnosis, meaning that support is available regardless of severity of illness.
To allow self help groups to function as effectively as possible in supporting health care in general, it will be beneficial for groups to establish links with local mental health services. These may be able to facilitate the referral process of group attendees where appropriate.
Beyond offering a role as a form of security net, there are indications that peer-to-peer support in the form of a self help group can have wider benefits for supporting recovery in eating disorders. The NICE (2004) guidelines suggest that “Informal supportive social relationships outside the treatment setting... have been identified as important in recovery.” The social toll of eating disorders is indicated to be as “disruptive to healthy psychological development as the biological toll is to physical development.” [15] Positive social adjustment and close social relationships are indentified to increase the likelihood of recovery [9] . Self help groups, due to their peer-to-peer nature can help increase social confidence and build self-esteem. They can allow students to discuss issues that they would not be comfortable discussing with friends, which can help generate strategies to make social interaction easier and more rewarding. In summary, peer-run self help groups take a step towards meeting the recommendation of strengthening social networks and social support made by the Royal College of Psychiatrists’’ report [13] .
In review of the practical use of self help groups, the NICE (2004) guidelines note that, “surveys of self-help groups suggest that they are regarded by the majority of attendees as helpful, being positively associated with social involvement and supportive sharing.” They suggest that:
“Given that self-help groups do quite well on very or fairly helpful ratings, the fact that self-help group users tend to use other professional services, and the finding that supportive social relationships outside formal treatment settings are associated with recovery, it seems more could be possible in terms of integrated working between statutory and voluntary services / agencies.” [1]
So there seems to be recommendations from both NICE guidelines and the 2003 report by the Royal College of Psychiatrists, suggesting that it may be beneficial to explore further the use of self help groups. It is clear that access to services for students with eating disorders is problematic so it seems sensible to provide a form of “security net” to ensure that students continue to receive support while in the process of transition between services or as they access services for the first time. The social setting of a self help group has further benefits for supporting recovery in the long term, and would seem to provide a low cost offer source of long term user-led support to help individuals maintain motivation through the ups and downs of recovery.
What can existing studies tell us about how best to provide this support?
There has been very little research exploring the use of self help groups to support individuals with eating disorders. There has been recently, however, increasing interest in using self help or guided self help techniques. The 2009 Cochrane review into self help and guided self help techniques indicated that these techniques may produce comparable outcomes to formal therapist-delivered psychological therapies. Guided self help works by a therapist leading self help groups, and thus differ significantly from the ethos of a peer-to-peer support group. This shift towards exploration of self help techniques, however, reflects the need to “bridge the gap” where “specialist treatment is not always easily accessible.” [16]
In line with the paucity of data on the use of self help groups, the 2009 Cochrane review notes that we need “large well-conducted effectiveness studies in self-help treatments with or without guidance incorporating cost evaluations and investigation of different types of self-help in different populations and settings.” [16]
A study was published in 1987 which reviewed the outcome of running a self help group for 6 months. The group had open membership and sessions were run by a social worker or psychologist. This suggests that different professionals ran each session. A questionnaire was sent to 25 regular attendees at the end of the 6 months. 18 of these individuals responded. 78% of the members reported finding the group helpful, citing that it was beneficial in “decreasing feelings of uniqueness.” One woman responded that “the group helped me feel that I was not a bad person, and I realised I was not alone or a freak.” Individuals reported feeling that the “group was a place where members... could openly discuss their eating disorder, something they could not do with their family or friends.” 17 of the 18 individuals who responded felt that there was a need to have a professional leader attend the group. 84% felt that there should have been more structure in the group. [17]
This suggests that while groups can be beneficial they need to be well led and follow a clear structure. It may be that the regular changes in group leaders which this project seems to have had, contributed in some degree to the attendees’ feeling of a need for more structure.
The NICE (2004) guidelines note that while groups can be positive, they can be experienced by some individuals as upsetting or promoting competitiveness in terms of weight loss and eating disorders behaviours. This further suggests that groups need to be well led and well structured. It is for this reason that we believe that the network of self help groups that the SRSH project would facilitate will be of considerable benefit. The project can ensure that group facilitators are thoroughly trained to understand how to minimise any upset or competitiveness that could arise in a group setting. The project can also ensure that group facilitators are supervised to ensure that this training is maintained and that the group facilitators are supported in their role.
Conclusions
The incidence and prevalence rates of eating disorders are highest amongst the student age group. It is further understood that though university brings valued benefits and can act as a tool to facilitate a change in life towards recovery, the environment can bring additional stresses. Thus it seems imperative to ensure that university students are able to access support for eating disorders. Similarly, if we are determined to work towards reducing the prevalence of eating disorders, providing support early and facilitating students with eating disorders to live more normal lives ought to be considered. It is recognised that there are problems accessing primary and secondary services. It is further accepted that patients are often ambivalent about recovery, can lack motivation and experience recovery as a journey with many lapses and set-backs along the way. Eating disorders are also understood to have a considerable social toll on individuals, who may end up feeling isolated and alone with their problems. Peer run self help groups thus seem well placed to offer easily accessible and unintimidating support which can provide continuing motivation through recovery. These groups may be well placed to encourage individuals into formal support and act as an “add on” to break the social isolation that can be experienced as individuals work through recovery with formal support.
From the limited research that has been conducted into self help groups it seems that there is a benefit to having a good structure and formal leadership. The SRSH project is well positioned to ensure both of these. It seems that it would be beneficial for groups to establish links with mental health services. These links could both facilitate referral processes when appropriate and may offer scope for professionals to attend occasional sessions to give additional supportive input to the group setting.
Finally the development of these groups falls in line with a developing preference for user-led services, placing the individuals attending the group sessions in control of the sessions. This self-help framework is beneficial in allowing individuals to see themselves as drivers of their recovery and can encourage individuals to be more proactive and motivated.
References
1.
NICE,
Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa, and related eating disorders
. 2004, British Psychological Society & Royal College of Pyschiatrists.
2. Diagnostic and Statistical Manual of Mental Disorders . 1994, American Psychiatric Association: Washington D.C.
3. Hoek, H.W. and D. van Hoeken, Review of the prevalence and incidence of eating disorders. International Journal of Eating Disorders, 2003. 34 (4): p. 383-396.
4. Fairburn, C.G. and K. Bohn, Eating disorder NOS (EDNOS): An example of the troublesome “Not Otherwise Specified” (NOS) category in DSM–IV. Behaviour Research and Therapy, 2005 43 : p. 691 - 701.
5. Hoek, H.W., et al., Impact of urbanization on detection rates of eating disorders. American Journal of Psychiatry, 1995. 152 : p. 1272 - 1278.
6. Soundy, T.J., et al., Bulimia nervosa in Rochester, Minnesota from 1980 to 1990. Psychological Medicine, 1995(25): p. 1065 - 1071.
7. Arcelus, J. and E. Button, Clinical and socio-demographic characteristics of university students referred to an eating disorders service. European Eating Disorders Review, 2007. 15 (2): p. 146-151.
8. Steinhausen, H.C., The outcome of anorexia nervosa in the 20th century. American Journal of Psychiatry, 2002. 159 (8): p. 1284-1293.
9. Steinhausen, H.C. and S. Weber, The Outcome of Bulimia Nervosa: Findings From One-Quarter Century of Research. American Journal of Psychiatry, 2009. 166 (12): p. 1331-1341.
10. Wilson, G.T., C.M. Grilo, and K.M. Vitousek, Psychological treatment of eating disorders. American Psychologist, 2007. 62 (3): p. 199-216.
11. Berkman, N.D., K.N. Lohr, and C.M. Bulik, Outcomes of eating disorders: A systematic review of the literature. International Journal of Eating Disorders, 2007. 40 (4): p. 293-309.
12. Fairburn, C.G., M.D. Marcus, and G.T. Wilson, Cognitive behaviour therapy for binge eating and bulimia nervosa: A comprehensive treatment manual , in Binge eating: Nature, assessment and treatment C.G. Fairburn and G.T. Wilson, Editors. 1993, Guilford Press: New York. p. 361–404.
13. The mental health of students in higher education (Council report CRI12). 2003, Royal College of Psychiatrists: London.
14. Gowers, S.G., et al., Impact of hospitalisation on the outcome of adolescent anorexia nervosa. British Journal of Psychiatry, 2000. 176 : p. 138–141.
15. Bulik, C.M., et al., Anorexia nervosa: Definition, epidemiology, and cycle of risk. International Journal of Eating Disorders, 2005. 37 : p. S2-S9.
16. Perkins, S.J., et al., Cochrane review of self help and guided self help for eating disorders; , in Cochrane Collaboration . 2009.
17. Franko, D.L., Anorexia Nervosa and Bulimia: A Self-Help Group. Small Group Research, 1987. 18 .
2. Diagnostic and Statistical Manual of Mental Disorders . 1994, American Psychiatric Association: Washington D.C.
3. Hoek, H.W. and D. van Hoeken, Review of the prevalence and incidence of eating disorders. International Journal of Eating Disorders, 2003. 34 (4): p. 383-396.
4. Fairburn, C.G. and K. Bohn, Eating disorder NOS (EDNOS): An example of the troublesome “Not Otherwise Specified” (NOS) category in DSM–IV. Behaviour Research and Therapy, 2005 43 : p. 691 - 701.
5. Hoek, H.W., et al., Impact of urbanization on detection rates of eating disorders. American Journal of Psychiatry, 1995. 152 : p. 1272 - 1278.
6. Soundy, T.J., et al., Bulimia nervosa in Rochester, Minnesota from 1980 to 1990. Psychological Medicine, 1995(25): p. 1065 - 1071.
7. Arcelus, J. and E. Button, Clinical and socio-demographic characteristics of university students referred to an eating disorders service. European Eating Disorders Review, 2007. 15 (2): p. 146-151.
8. Steinhausen, H.C., The outcome of anorexia nervosa in the 20th century. American Journal of Psychiatry, 2002. 159 (8): p. 1284-1293.
9. Steinhausen, H.C. and S. Weber, The Outcome of Bulimia Nervosa: Findings From One-Quarter Century of Research. American Journal of Psychiatry, 2009. 166 (12): p. 1331-1341.
10. Wilson, G.T., C.M. Grilo, and K.M. Vitousek, Psychological treatment of eating disorders. American Psychologist, 2007. 62 (3): p. 199-216.
11. Berkman, N.D., K.N. Lohr, and C.M. Bulik, Outcomes of eating disorders: A systematic review of the literature. International Journal of Eating Disorders, 2007. 40 (4): p. 293-309.
12. Fairburn, C.G., M.D. Marcus, and G.T. Wilson, Cognitive behaviour therapy for binge eating and bulimia nervosa: A comprehensive treatment manual , in Binge eating: Nature, assessment and treatment C.G. Fairburn and G.T. Wilson, Editors. 1993, Guilford Press: New York. p. 361–404.
13. The mental health of students in higher education (Council report CRI12). 2003, Royal College of Psychiatrists: London.
14. Gowers, S.G., et al., Impact of hospitalisation on the outcome of adolescent anorexia nervosa. British Journal of Psychiatry, 2000. 176 : p. 138–141.
15. Bulik, C.M., et al., Anorexia nervosa: Definition, epidemiology, and cycle of risk. International Journal of Eating Disorders, 2005. 37 : p. S2-S9.
16. Perkins, S.J., et al., Cochrane review of self help and guided self help for eating disorders; , in Cochrane Collaboration . 2009.
17. Franko, D.L., Anorexia Nervosa and Bulimia: A Self-Help Group. Small Group Research, 1987. 18 .
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