Self-help groups for psychiatric and psychosomatic disorders in Germany—themes, frequency and support by self-help advice centres
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- Meyer, F., Matzat, J., Höflich, A. et al. J Public Health (2004) 12: 359. doi:10.1007/s10389-004-0071-0
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Self-help groups have found increasing recognition by health professionals in recent years. However, considerable research deficits remain, particularly regarding self-help groups for persons with psychiatric and psychosomatic disorders. We present a survey on the dissemination and differentiation of such groups in Germany and their support by self-help advice centres. Most likely, more than 5,000 of these groups exist covering a broad range of psychiatric disorders, particularly groups for families and partners, bereavement, anxiety disorders, depression, and eating disorders. These groups are supported by self-help advice centres in various ways from information to group counselling in difficult periods. The results of the survey encourage further in depth study of self-help groups, their cooperation with psychotherapists, and their health promoting potentials.
KeywordsSelf-help groupsPsychiatric and psychosomatic disordersCare system
The significance and value of self-help groups have increasingly been acknowledged following the lasting scepticism or rejection by professionals in many areas of health care. They have been named the “fourth column” of Germany’s health care system (Matzat 2002a), in addition to office-based physicians, hospitals and the public health service. Nationwide self-help organisations have evolved representing a variety of self-help groups for people with chronic diseases, disabilities or addictions. Psychiatric and psychosomatic disorders, however, are hardly represented. This may be due to the nature of these disorders (frequently associated with interpersonal problems, social inhibition etc.), and their stigmatization. In many cities and districts in Germany, professionally run self-help advice centres (“Selbsthilfe-Kontaktstelle”) have been established in order to provide assistance in developing and supporting self-help initiatives (Matzat 1999, 2002b). The effectiveness of these centres was supported by scientific programmes of the Federal Health Ministry (Braun et al. 1997). A national self-help clearing house (NAKOS) has been established in Berlin according to recommendations of the WHO’s European regional office. This institution—among other activities—surveys relevant activities of the self-help advice centres. It is run by the Deutsche Arbeitsgemeinschaft Selbsthilfegruppen (DAG SHG), an association of self-help supporters who are mainly professionals from psychology, social work and similar fields. In particular, they support self-help groups—no matter what their theme is—on a regional basis by professionally organised self-help advice centres and encourage self-organised groups of people suffering from diseases or special social problems based on personal exchange of experience and mutual support. DAG SHG is one of the organisations which have been acknowledged by the Statutory Health Insurances as a partner for the realisation of their self-help supporting activities, and was called upon by the Federal Ministry of Health and Social Security to send representatives to the newly established “Gemeinsamer Bundesausschuss”, the highest decision-making body in Germany’s self-governing health system.
Despite this development there have been hardly any systematic scientific studies regarding access, utilisation and effectiveness of self-help groups—with the exception of the area of addiction (cf. Emrick et al. 1993; Kyrouz & Humphreys 2003). In public health research this issue has found little attention, except for some projects in Munich and Berlin on the cooperation between health-related self-help groups and medical professionals (v. Troschke 2001). In an important research scheme on rehabilitation, started a couple of years ago as a joint venture by the Federal Ministry of Education and Research and the Statutory Pension Insurances, self-help groups have been hardly recognised, neither as a subject nor as a partner. Significant research gaps still remain (cf. Badura et al. 2001; Borgetto 2003).
Significant open issues concern the utilisation and potential barriers of access. Thus, only 6–9% of those who have been afflicted by a certain disorder participate in self-help groups. In the total population, between 1% and 4% are estimated to be participants of self-help groups (Grunow 1998; Kettler & Becker 1997). While members have frequently reported positive effects from self-help group participation (cf. self-help year books of the DAG SHG), and professional self-help supporters in the self-help advice centres have gathered clinical knowledge (e.g. a case study in Matzat & Spangenberg 1989), specific factors have not been studied. It is not clear what proportion of sufferers only participate temporarily in such a group, and who benefit more or less from participation. Regarding possibilities of cooperation between professionals and self-help groups in the psychotherapeutic area, there also remains need for research. Health economic surveys would be of further interest. A somewhat speculative, however, impressive calculation has already been presented by a study group from Munich in 1995 (Engelhardt et al. 1995).
Self-help groups for people with psychiatric disorders have hardly been studied—except for early studies by the research group around M.L. Moeller in Giessen (cf. Daum 1984; Daum et al. 1984; Moeller 1992; Moeller 1996; Stübinger 1977). This probably has several reasons: For one, as opposed to addiction or chronic disease, little is known about the dissemination of those groups, even among experts. Fichter & Cebulla (2001) included psychiatric disorders in their study on self-help organisations in Germany; however, the results do not permit conclusions about the number of local groups. On the other hand these groups have a low level of organisation and are hard to access for researchers. If and which groups on specific issues are available locally, can only be determined based on local expertise of self-help advice centres. These centres can fulfil several tasks: keeping track of self-help groups in their region, informing persons interested about the basic idea and concept of self-help groups, supporting groups (in founding or in difficult group phases), and providing resources (e.g. rooms for group meetings, provision of communication facilities). Also they serve as a connection between professional care and self-help (Matzat 2003).
Which and how many “psycho self-help groups” exist for which issues and diseases in Germany? How do the groups work (frequency of meetings etc.)?
Which kinds of support are offered for “psycho self-help groups” by self-help advice centres?
How do staff members of the self-help advice centres appraise the acceptance of self-help by psychotherapists?
As hardly any “psycho self-help groups” are organised on a nationwide level—except for groups of the anonymous type (12-step groups)—these issues were to be answered by a survey of all self-help advice centres in Germany. These centres (N=266) are well documented in a regularly revised directory by the national clearinghouse (NAKOS: local/regional self-help support in Germany: “Rote Adressen” 2002/2003). Local self-help advice centres were expected to be able to give detailed information on self-help groups in their respective regions. As additional sources, the internet pages of Emotions Anonymous and Overeaters Anonymous were analysed (http://www.emotionsanonymous.de, http://www.overeaters-anonymous.de). A specifically constructed questionnaire was sent to all self-help advice centres in January 2004. As no standardised measures were available regarding the study issue, construction of the questionnaire was based on long-standing experiences by one of the authors (JM) regarding self-help advice on a local and national level. It was modified according to expert consultations with cooperating self-help advice centres. In the first part of the questionnaire the resources of the self-help advice centres (e.g. number and qualification of staff, autonomy of the institution) were inquired. Means of support for self-help groups and affected persons were defined (based on the categories listed in Table 2, multiple answers possible). The acceptance of self-help by psychotherapists in the region was also appraised. In the second part of the questionnaire all known “psycho self-help groups” in the respective region should be listed. A brief definition of self-help groups was given: small groups in which affected persons assemble without a professional leader, in order to discuss and reflect on their difficulties in the group. These were named according to medical diagnoses (e.g. anxiety, depression, eating disorder, borderline personality disorder, stuttering) or related to certain issues (e.g. mobbing, separation/divorce, bereavement). Also self-help groups of relatives should be listed. It cannot be assumed that relatives necessarily develop psychiatric or psychosomatic symptoms as a response to the disease of their next of kin; however, they often experience their psychosocial situation as so stressful that they become members of a group of their own. Therefore they were included in this list. Respondents were instructed not to include self-help groups for people who suffer from a substance addiction (e.g. alcohol, drugs) but to list groups on “addiction” which are not substance-related (e.g. eating disorder, gambling, shopping addiction). For each self-help group they should list the group’s name and answer the following questions: type of group (categories: Anonymous/12-steps, rather open, rather closed group), frequency of meeting (weekly, fortnightly, monthly, or less frequently), number of members (up to 6, 7–12, 13–18, more than 18 members), proportion of female participants (less than one-third, between one and two-thirds, more than two-thirds), involvement of experts (never, rarely, frequently), and the continuity of the self-help group (less than 1 year, 1–2 years, 2–3 years, more than 3 years). The questionnaire contained additional questions, e.g. on number of enquiries in the self-help advice centre regarding “psycho self-help groups”. Those issues are not presented here. The questionnaire can be obtained from the authors.
Those self-help advice centres which had not responded were contacted again 8 weeks later. Analysable questionnaires were returned from a total of 225 self-help advice centres, corresponding to a return rate of 84%. Some self-help advice centres in metropolitan areas declared their willingness to cooperate, however, due to the large number of groups registered in their data bases they felt unable to give detailed responses to each individual group. Three of them only sent listings and names of self-help groups in their region without specifically characterising them on the categories displayed below. Another five self-help advice centres sent computer-based lists from which the “psycho self-help groups” were extracted by the first author. Analyses of the non-responders regarding the size of the city or its location in Germany did not point to a systematic bias.
Distribution of “psycho self-help groups” according to issues
Addiction (unrelated to substance)
Anxiety & depression
Spouses & affected persons together
Borderline personality disorder
The label “psychisch Kranke” (“psychiatric disorder”) was taken to indicate a severe psychiatric disorder (like schizophrenia or bipolar disorder).
Groups labelled according to physical diseases (e.g. cancer, tinnitus, multiple sclerosis, AIDS) were included under the category of psychosomatic disorders/coping, as the self-help advice centres had reported them responding to our inquiry about “psycho self-help groups”.
When group labels implied two categories, those related to diagnosis were chosen (e.g. “women with eating disorders” were assigned to the category “eating disorders”).
The interrater reliability of the category system was checked based on 322 groups selected at random; the second rating was done independently by a research assistant. Reliability was very good (Cohen’s Kappa: 0.946). The randomised selection of groups for determining the interrater reliability and the statistical analyses (frequencies) were computed by SPSS 11.0 for Windows.
Distribution of “psycho self-help groups” and their functioning
The self-help advice centres responding (N=225) described a total of 3,245 groups (79% of all groups) in detail. The range of groups reported by the different self-help advice centres was between 1 and 82 groups (median: 10 groups). As described above, 184 groups (4.5%) were identified by computer-listings of self-help advice centres, and another 681 (16.6%) were based on estimates by self-help advice centres in metropolitan areas. Thus a total of 4,110 self-help groups for people with psychiatric or psychosomatic disorders could be determined.
As described above, the self-help groups were classified based on the category system (see Table 1). Groups of relatives, spouses or partners were the most frequent category. The second most frequent category referred to bereavement and loss of relatives or loved ones. In descending order, groups for people with psychiatric disorders (like schizophrenia or bipolar disorder) were listed, followed by anxiety disorder, depression, eating disorder, addiction (unrelated to substances) and psychosomatic disorder/coping. Additional categories were gender groups, anxiety and depression together, Emotions Anonymous, groups on sexual violence and abuse, on separation and divorce. Less frequently reported (less than 2%) were groups for single parents, obsessive-compulsive disorder, affected persons and spouses together, mobbing, messy syndrome (individuals tending to chronic disarray, disorganisation and accumulation of worthless objects), stutterers, and borderline personality disorders.
Despite the heterogeneity of groups categorised, only 9.9% of all groups could not be assigned unequivocally, e.g. self-help groups labelled as “harmony”, “falling star” or “against psycho-stress”. Presumably, this category includes mixed groups with diverse psychosocial problems, predominantly with anxiety or depressive symptomatology.
In order to assure the quality of the number of self-help groups determined, for the group of Overeaters Anonymous (OA) and Emotions Anonymous (EA) a comparison was made with the groups listed on the respective internet pages of these self-help organisations. A total of 225 EA and 183 OA groups were registered there; our survey had revealed only 124 EA and 84 OA groups. This difference is most likely explained by the fact that in certain areas EA or OA groups exist, but no self-help advice centre, or the centre did not mail back our questionnaire. Moreover, anonymous (12-steps) groups have a tendency to keep a distance from professionals and do not seek support from them.
Analysing the functioning of the self-help groups only those groups were included which had been described in detail by the self-help advice centres. From these 3,245 self-help groups, 65.1% had a rather open and 15% a rather closed format; 13.1% followed the so-called 12-steps programme of anonymous groups, missing data (MD) 6.9%. Of the “psycho self-help groups” listed, 46.8% had existed for more than 3 years. On the remaining categories the frequencies were comparable (up to 1 year: 11.7%, 1–2 years: 13.1% and 2–3 years: 13.3%; MD: 15.0%). The groups usually met weekly (35.8%) or fortnightly (28.0%), only 25.1% met monthly or less frequently (MD: 11.0%). Regarding the issue, how frequently experts were invited by the self-help groups, the proportion of missing data was particularly high (39.4%). The workers in the self-help advice centres were often unable to assess this characteristic of self-help group work. Such details may not have been particularly relevant for them, or the groups saw no reason to inform the self-help advice centre about their collaboration with other health care professionals. According to our data, 15.5% of the groups never invited experts, 28.6% did this rarely, and 16.6% frequently.
Conditions and resources of the local self-help advice centres
Self-help advice centres surveyed had different amounts of qualified staff resources: in 44% only one part-time position was staffed, in 28.9% one full-time position, and in 25.8% more than one position. Correspondingly in 33.3% of the cases the self-help support was only done as a sideline job (e.g. based in a health insurance or a municipality).
Aspects of the regional self-help support for “psycho self-help groups”
Aspects of regional support
Support of self-help advice centres for “psycho self-help groups” (SHG) (multiple naming possible)
Facilitating of founding meetings
Counseling interested citizens
Counseling meetings with other SHG (“Gesamttreffen”)
How often do you discuss professional psychotherapy as an alternative?
In up to 25% of enquiries
In 26–50% of enquiries
In 51–75% of enquiries
In more than 75% of enquiries
Relationship between “psycho SHG” und self-help advice centres in comparison to other SHG
Somewhat more distant
Noticeably more distant
Acceptance of “psycho self-help groups” and self-help advice centres by psychotherapists
We asked how staff members assessed the acceptance of their self-help advice centre and of “psycho self-help groups” in the region by psychotherapists in private practice. Of the respondents 50% reported a high or very high acceptance regarding the groups, and 59.5% regarding the self-help advice centre itself, 43.2% rated the acceptance of self-help groups as moderate, 35.5% regarding the self-help advice centre. A low or very low acceptance of self-help groups by psychotherapists was perceived only by 6.8% of the respondents, and by 5% regarding the self-help advice centre.
The main aims of the survey were to determine the number, the issues and characteristics of self-help groups for persons afflicted with psychiatric and psychosomatic complaints. For this purpose all German self-help advice centres were surveyed, as the groups to be studied are hardly organised on a regional or national level. The high return rate of 84% speaks for the very high acceptance of the survey by the self-help advice centres. In additional remarks on the questionnaires, frequently their curiosity regarding the results was expressed, and the meaningfulness of the survey was underscored. Thus for the first time a sufficiently reliable data basis is provided enabling us to estimate the distribution of “psycho self-help groups”. Based on the detailed responses of the self-help advice centres we could identify a total of about 4,100 “psycho self-help groups”. However, it needs to be considered that 16% of the self-help advice centres have not answered. Further it must be assumed that a certain proportion of self-help groups is not known by the self-help advice centres either as these groups want to work without the support of a self-help advice centre, or they are unaware of its existence. Also, while there is a strong network of self-help advice centres in Germany, in certain regions no such centres exist. This was demonstrated by the parallel analysis of the internet web-pages of OA and EA groups. Our survey represented only 55–58% of the groups listed on their web-pages. It must be considered, however, that self-help groups of the anonymous (12-steps) type prefer to function distantly from experts. It is likely that about 5,000 “psycho self-help groups” exist in Germany and represents about 5–7% of the estimated total of self-help groups in Germany (Matzat 2003). Its magnitude is almost comparable to the number of addiction self-help groups (about 7,500 addiction self-help groups according to Hüllinghorst 2001).
As we had expected, the self-help group landscape in this area is rather diverse, there are groups for many critical life-events such as separation, divorce or coping, and other groups offering support for different disorders such as depression, anxiety or eating disorder. Thus the category system differentiated between 21 categories. A remaining category likely included many mixed groups with people with different psychiatric or psychosomatic disorders. This would also explain why the categories of anxiety disorder, depression, or anxiety and depression together have remained relatively small. Members of the self-help groups do not speak the language of the ICD-10. “Relatives of psychiatric patients” has become a technical term in Germany, which has been established for those self-help groups. These spouses and partners—in contrast to most other self-help groups—are highly organised at the state and federal levels. The groups of relatives and the groups of psychiatric patients add up to more than 20% of the self-help groups identified. We had not anticipated that the majority of “psycho self-help groups” had already existed for an extended period (more than 3 years). This result demonstrates that these groups are rather stable, withstanding occasional drop-outs or additional new members (“slow-open group”). The surprisingly large number of “psycho self-help groups”, their variety and the fact that the majority have been described as open groups makes it likely that many of those interested, particularly in metropolitan areas, could find a self-help group in their proximity.
In most cases afflicted persons can expect competent service by the self-help advice centres, which offer a broad range of support for interested citizens and for the existing self-help groups. The significance of support for “psycho self-help groups” through self-help advice centres cannot be estimated highly enough, when one considers the difficulties to be expected in the group work without a professional group leader. For the staff of the self-help advice centres it is of particular importance to find the delicate balance between offering adequate professional support, e.g. in case of a crisis, and trust in the self-help potential of the group (Moeller 1992). It is necessary to accumulate, analyse and transfer the self-help knowledge through self-help advice centres to existing and newly founded “psycho self-help groups” and to counsel people who consider participating in an existing group or founding a new one. Self-help advice centres supply suitable rooms and opportunities for meeting other self-help groups for mutual exchange of experiences. These functions can be fulfilled by most self-help advice centres. Thus they can make a valuable contribution for activating self-help potential in the community, particularly in the area of psychiatric and psychosomatic disorders.
It must be added that the ad hoc constructed questionnaire could be improved, e.g. only the acceptance of self-help by psychotherapists was ascertained, not by other potential cooperation partners. On the other hand the effort of the survey for the participants should remain as low as possible. A major difficulty results in assessing “psycho self-help groups” is the specific characteristic of these groups that they can be found only locally, as they are not associated with nationwide self-help organisations. Therefore these groups were assessed indirectly by self-help advice centres. Thus potential effects of selection (e.g. limited regional surveys) had to be considered. As the self-help advice centres are well documented and have shown to be very cooperative, our way of proceeding appears to be justified. The number of the groups listed and the information given on a variety of group issues attest to the good knowledge of local self-help groups by the self-help advice centres.
We would like to thank our colleagues in the self-help advice centres for supporting our study with great commitment.