Self-Help Groups and Consumer Participation: A Look at the German Health Care Self-Help Movement

Abstract

Institutionalized rights for the participatioii of consumers in the decision-making processes or provision of health and social services do not exist in West Germany. However, consumers have begun to voice their concerns about this state of affairs and have undertaken more involvement in the planning and implementation of their own forms of health care, while concurrently pressuring the health care and social services systems to become more responsive to their needs. We note two reasons for the existence of such opposition to such participation. We argue that self-help associations (several types of which are described herein) are at present the only relevant form of consumer participation in West Germany, by focusing our attention on the tasks and accomplishments of health relevant to self-help associations. These associations offer effective ways of dealing with the rigidity and heaviness of large bureaucratic organizations such as political parties and unions. We conclude by identifying newer pro-active roles and responsibilities of the patient as consumer both within and external to the official health care system.

‘Brothers in arms’: how men with cancer experience a sense of comradeship through group intervention which combines physical activity with information relay

“…In Nordic countries, as well as internationally, referrals to patient support organizations and self‐help groups for persons with cancer have been predominantly for women (Trojan et al ., 1987; Adamsen & Hertz, 1992; Diemer & Stenbak, 1992; Gray et al ., 1996; Borkman, 1997; Barlow, 2000; Wituk et al., 2000). This is thought‐provoking, especially when considering that the number of persons afflicted with cancer each year is evenly distributed between the sexes (The cancer registry Danish National Board of Health,,1996).…”

`From victim to agent': the clinical and social significance of self‐help group participation for people with life‐threatening diseases

“…Internationally, self‐help group work has been known for decades in, e.g. the USA, UK, Belgium, Germany, and France (8–13). It is predicted that self‐help groups will become, in 10 or 20 years, a dominant form of treatment for people suffering from a number of psycho pathologies and nonpsychiatric illness/`life predicaments' (14, 15).…”

Labor of love: The formalization of care in transgender kinship organizations

“…These data contribute to the theory on organizational development and offer new conceptual tools for analyzing boundaries between organizations and community. The literature on self-help groups outlines a developmental process that first begins with the “solidarization” of an informal group (Trojan et al, 1986). As groups formalize, there is a transition from volunteers to paid staff (Einarsdóttir and Osia, 2020; Katz, 1986; Pearce, 1993), from individual donors to institutional funding (Chambré, 1997), from informal shared leadership to bureaucracy (Katz, 1961), and from a clear social justice mission to a mission in danger of being swayed by financial imperatives (Cooney, 2006; Sanders and McClellan, 2014).…”

“…Self-help groups provide concrete services, but value experiential knowledge over professional training or credentialing (Katz, 1986). Self-help organizations begin with solidarization (gathering enough people to begin self-help) and move through five developmental stages, concluding with institutionalization of an activity area, or “the permanent and regular offer of services to the public” (Trojan Halves and Wetendorf, 1986: 263). An expansion of services, and the bureaucratization often required to provide these services, can undermine the shared governance and mutual assistance that characterize self-help groups in their early days (Kalifon, 1991).…”

“…Community-based organizations catalyze new social ties and solidarities. In some cases, individuals form organizations with an explicit commitment to reciprocal self-help (Kalifon, 1991; Katz, 1961; Trojan et al, 1986). Even when peer support is not the organizational objective, routine interactions between nonprofit participants can create social capital by fostering trusting ties and thereby expanding the social networks participants can draw to access care, information, and material goods (Silverman, 2001; Small, 2009; Stoll, 2001).…”