Self-help for people with disabilities, chronic conditions and addictions

Self-help exists in many areas of life. In the field of health, self-help can make it easier for people to deal with disabilities, chronic conditions and addictions as well as to improve their quality of life.

People with the same health and mental problems come together in self-help groups to jointly address them and mutually support and motivate each other.

The range of self-help groups is huge. Interested parties can find a self-help group for almost every kind of physical and mental illness, disability or mental conflict situation. There are currently around 100,000 groups in Germany (as of 2022), including many for rare conditions and for relatives.

Many of these groups have joined together to form larger self-help organizations. These also offer a wide range of support and advice services – including for those seeking advice outside the field of self-help. They also get involved on a political level.

Self-help cannot replace medical or therapeutic treatment, but it can effectively complement it. As a result, self-help is recognized as an important part of the German healthcare system and is funded by statutory health insurance providers and the public sector.

Many people find that the emotional support, the sharing of experiences and the mutual understanding between the members of a self-help group helps them to self-sufficiently deal with their condition, disability or mental illness.

Self-help can make it easier for people to develop strategies for managing their conditions, to tailor their everyday life and social needs to their own wishes and to cope with emotional strain. People with addictions find that the sense of community and chance to talk about the addiction and how to manage it play a major part in them leading an abstinent, addiction-free life.

The members themselves determine how a self-help group’s meetings are organized and what services it offers – in line with their needs. As a result, the meetings and services can vary greatly from group to group.
 
For example, the following are all possible:

• meetings, club meetings or round tables
• group excursions and trips
• sports programs, physical exercises and mindfulness training
• info events on the condition
• counseling sessions and consulting services

In addition to meetings, other forms of exchange and advice are also possible, for example many self-help organizations offer telephone or online consultations, internet forums, newsletters, brochures or magazines, websites and social media.

The following apply:

• The members themselves freely determine the group’s goals, how they want to achieve these and how often the members meet. There is no guidance from specialists, e.g. doctors. Most self-help groups appoint a leader from within their midst.
• Many self-help groups also welcome people who attend spontaneously, without them having to directly join as members.
• Self-help groups offer a protected space in which everything is treated with complete confidentiality. People can talk freely about themselves and their problems while also finding out how others deal with similar challenges.
• Health does not have to be the sole topic of discussion. Discussions can also cover the mental and social aspects of a condition, for example the way in which siblings grow up together, the forms that school life, training, higher education and professional life can take or how people can deal with family planning or living alone.

Further information on the activities and organization of self-help groups can be found on the NAKOS and BAG SELBSTHILFE websites, among other places.

Health literacy

A broad knowledge of the health condition, treatment options, patient rights and possible health and care insurance benefits is an important prerequisite for self-sufficiently and successfully dealing with an illness or disability.

Doctors are the first point of call for medical questions. Other questions in relation to the condition or disability often arise after the doctor’s appointment. Self-help organizations know where to find accurate and comprehensible information. They are also able to recommend experts and independently organize events or meetings with specialists. They can usually recommend suitable services, therapists or other contacts in the local area.

Self-help organizations can also provide advice on the health and social welfare system in Germany or on where people can obtain professional help and legal advice.

Efficacy

The efficacy of self-help is the focus of multiple studies.  

One example is the SHILD study, which examined multiple aspects of health-related self-help over several years using the example of five different chronic conditions. 

In summary, the results highlight the many positive effects of self-help in many of the areas observed, for example with regard to the medical knowledge about the conditions as well as social, care and employment regulations. 

The majority of those surveyed rated the personal benefit of their self-help group as high, although many also said that they found the situation and fate of the other members distressing. 

The brochure “SHILD-Studie – Gesundheitsbezogene Selbsthilfe in Deutschland (SHILD Study – Health-related Self-Help in Germany)” from the University Medical Center Hamburg-Eppendorf (UKE) and Hanover Medical School (MHH) provides an overview of the study results (in German only).

The age, professional or educational background, culture, religion or other characteristics of those looking for support from a self-help group are irrelevant. Despite this, people often come together to form “special” self-help groups. 

There are certain personal traits that increase mutual understanding between the members of a self-help group. This often makes it easier for them to discuss similar problems and challenges in life.

Some self-help groups are therefore specifically aimed at

• young adults
• people from different cultures
• relatives like parents, children, siblings and partners as well as friends
• people with addiction problems and their relatives

Self-help for young people

Young adults with disabilities or chronic conditions often face certain challenges relating to their education, career, family and relationship. They have their own ideas on how to deal with these. As a result, self-help groups aimed at young adults between the ages of 18 and 35 are being set up with increasing frequency.

The NAKOS portal www.schon-mal-an-selbsthilfegruppen-gedacht.de offers information about self-help for young adults as well as contact details for self-help groups aimed at them.

Self-help services are also available for children and adolescents. In such cases, parental consent is required. 

Intercultural self-help

When interacting with people from different cultural backgrounds, it is not just language that can pose a barrier. The manner of communication, attitudes and values also play an important role in interactions. Many self-help organizations are sensitized to the topic of intercultural communication.

There are also many self-help groups aimed at people from a migrant background.

Self-help for relatives

If a family member is ill, this can affect the life of their relatives, such as grown-up children, parents, partners or siblings, but also their friends. These too can find it useful to discuss the situation, problems and solutions with other relatives.

Some self-help groups are solely for relatives; others can be attended by both relatives and the person with the condition.

Self-help for addiction

Self-help for addiction can be useful for people with addiction problems, such as dependencies on addictive substances, gambling problems or eating disorders. It is an important part of addiction therapy. 

The aim is to deal with problems associated with the dependency by talking to others. Self-help groups are aimed both at people with addiction problems and their relatives.

The German Center for Addiction Issues (Deutsche Hauptstelle für Suchtfragen e.V. – DHS) provides contact details for local and regional help services.

In addition to their standard services and physical meetings, many self-help organizations also enable people to communicate via digital channels: the internet and media such as websites, e-mails, social media, forums and blogs make it possible to reach and connect more people. Video chats enable people to attend self-help group meetings, events, counseling sessions and training even if their health or location prevents them from doing so in person.

At the same time, digitization is presenting new challenges and tasks in relation to self-help. The individual applications must be selected and used in such a way that digital self-help is effective. It must also be ensured that all members are involved in the process and that the personal details, health data, privacy and anonymity of the participants are all protected. 

The new digital opportunities in the field of healthcare are also expanding the range of self-help counseling services. Applications like the electronic patient record (ePA), electronic medication treatment plan (eMP), digital health applications (DiGA) and digital care applications (DiPA) offer people the chance to improve or simplify their healthcare, especially for those with chronic conditions.

Further information and support on the topic of digitization in the field of self-help can be obtained from the national self-help contact point NAKOS and the German Parity Welfare Association (Paritätische Gesamtverband).

The level of structure with which health-related self-help in Germany is organized differs greatly.

Self-help groups and self-help organizations

Self-help groups are the basis of self-help work. There are groups in which people meet voluntarily, groups that people are obliged to attend and even groups that are organized like clubs. 
 
A significant number of self-help groups have joined together to form local self-help associations or organizations on a state or national level, often with a focus on specific health conditions, disabilities or consequences of illnesses. This enables the groups and associations to cooperate more closely and benefit from each other. In many cases, they also have a far wider external reach. 

Furthermore, various umbrella organizations have formed that represent the interests of self-help at national level.

Most people who work for self-help services do so as volunteers. That means that they are unpaid or only receive small allowances for expenses. 

Some self-help organizations work with specialists or their own specialist personnel, primarily to ensure reliable information, provide counseling services and offer training opportunities for the volunteers. They help with organizational matters and act as a point of contact in the event of crises, for example. 

Self-help contact points

Self-help contact points are professional advice centers. Full-time employees inform interested parties about how self-help groups work, help them establish new groups and provide information about suitable local groups. They also assist self-help groups and organizations with technical questions. 

NAKOS provides contact details for local and regional self-help contact points.

Political work

Self-help has been committed to the interests of people with disabilities and chronic conditions in Germany for many years, for example to inclusion, participation, education, the elimination of prejudices and fears as well as adequate healthcare. The self-help organizations and umbrella associations perform public relations work, take a stance on legislative proposals and make demands in the fields of politics and public administration. 

The umbrella associations for self-help also appoint members to act as patient representatives on health committees at state and national level, thereby involving them in the way healthcare is designed.

Finance and funding

Many self-help organizations are primarily financed by membership fees; some rely on donations, sponsorship or grants to fund their services. 

As self-help is an important and recognized part of German healthcare, it is funded by health, care and pension insurance providers, for example. However, the national, state and local authorities can also provide financial support. Private backers are often donors, sponsors and foundations.

Further information about self-help funding can be found on the websites of the German National Association for Self-Help (Bundesarbeitsgemeinschaft Selbsthilfe – BAG SELBSTHILFE)
and the national self-help contact point NAKOS. 

Independent nature of self-help

The services and information provided within the scope of self-help should solely serve the interests of the people seeking advice. It is therefore important that other players in the healthcare sector do not have any influence, for example in exchange for funding.
 
To ensure the neutrality and independence of self-help services, binding guidelines exist on the acceptance of donations and sponsorship as well as cooperation with organizations and businesses within the field of healthcare. Many self-help groups use self-disclosures to present the sources and amounts of the financial support that they have received.

Data protection

Clubs generally hold member data. If this includes health-related personal data, it has to be protected particularly carefully as such data is subject to higher data protection standards.
 
The self-help contact points and umbrella associations train self-help groups and organizations on data protection and assist them with the practical implementation of legal principles. Particular focus in this regard lies on the safe use of online services in line with data protection requirements.

Further information about data protection and self-help can be obtained from NAKOS.

Advice centers and member associations provide the contact details of self-help organizations and groups.

The national database managed by the National Contact and Information Point for Encouraging and Supporting Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen – NAKOS) provides contact details in relation to individual self-help services, regional contact points and other similar organizations.

Several self-help associations for people with disabilities or chronic conditions and their relatives have come together to form the German National Association for Self-Help (Bundesarbeitsgemeinschaft Selbsthilfe e.V. – BAG SELBSTHILFE). The website provides contact information for the member organizations.

The Alliance of Chronic Rare Diseases (Allianz Chronischer Seltener Erkrankungen e.V. – ACHSE) is an alliance of self-help groups and associations for rare diseases. The website provides contact details for all member organizations.

The German Center for Addiction Issues (Deutsche Hauptstelle für Suchtfragen e.V. – DHS) is the umbrella association for self-help organizations for people with addictions. It provides an overview of all its member organizations.

The German Parity Welfare Association (Deutscher Paritätischer Wohlfahrtsverband e.V. – DPWV) is a leading social welfare association. Self-help associations that are DPWV members have come together to form the “Forum for Chronically Ill and Disabled People (Forum chronisch kranker und behinderter Menschen)”. An overview can be found on the website.