Self-help friendliness in cancer care: A cross-sectional study among self-help group leaders in Germany.

BACKGROUND: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self-help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self-help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. METHODS: A cross-sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self-Help and the federal associations of cancer self-help. RESULTS: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. CONCLUSIONS: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. PATIENT OR PUBLIC CONTRIBUTION: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self-help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants.

[Self-help friendliness in ambulatory care, hospital care and rehabilitation services : Is collaboration with self-help structures being recognised in quality management systems?] / Selbsthilfefreundlichkeit in ambulanter, stationärer und rehabilitativer Versorgung : Wird die Kooperation mit der Selbsthilfe in Qualitätsmanagementsystemen berücksichtigt?

BACKGROUND: The "self-help friendliness" concept means the sustainably institutionalised collaboration of health services with self-help groups, led by criteria defining good collaboration. It aims to improve patient-centeredness. Therefore self-help friendliness should be taken into account in quality management systems (QMSs). OBJECTIVE: The objective is an analysis of whether and to what degree criteria of good collaboration have been introduced into the most widespread quality management systems in Germany. MATERIAL AND METHODS: Overall, 17 QMSs were analysed: hospital care (3), outpatient care (8), rehabilitation (6, the quantitatively most important ones). METHODS: analysis of websites, supplemented by a qualitative email survey with five to seven short questions building on our knowledge from websites and a previous survey. RESULTS: Criteria for good collaboration are well represented within QMSs for inpatient care and within the most widespread ones for doctors in ambulatory care (seven of seven relevant sector-specific QMSs). This is not the case in the quality management system based on DIN EN ISO 9001-2000 and three lesser used ones in ambulatory care. All six researched QMSs for rehabilitation services contain some (between one and four) tips for collaboration with self-help groups, however they are not very visible. DISCUSSION: The German network "Self-help friendliness and patient-centeredness in health services" tries to improve the overall unsatisfactory situation through closer collaboration with QMSs. The recently started discussion on quality premiums for good healthcare services may be favourable for future development, if patient-centeredness is recognised as a crucial quality goal.

[Self-help support, self-help groups and self-help friendliness in Switzerland-between subsidiary structure and national development needs]. / Selbsthilfeunterstützung, Selbsthilfegruppen und Selbsthilfefreundlichkeit in der Schweiz ­ zwischen subsidiären Strukturen und nationalem Entwicklungsbedarf.

The Swiss welfare state is marked by strong federalism and subsidiarity, e. g. when it comes to social and health policies. This contribution presents findings of the first national study on self-help in Switzerland.This contribution is based on three sub-projects: 1. an oral and an online survey of the management personnel of the national organization Self-help Switzerland (Selbsthilfe Schweiz) and all regional self-help centers; 2. a quantitative-descriptive evaluation of the Self-help Switzerland's database with over 2500 self-help groups; and 3. twelve semi-structured interviews with experts from the social and health system.Little support is given at the national level to the self-help system. While Self-help Switzerland deals with topics of national importance, promotion of self-help has so far primarily been the domain of the regional self-help centers. This led to large regional differences in the dissemination and the development of self-help groups. There are also regional disparities in the cooperation between self-help groups and centers with the professionals and institutions from the social and health system.Self-help is discussed as characteristic for the federalist and subsidiary culture of the Swiss welfare state. The current self-help landscape is regionally based and locally financed. There is a substantial need for development on the national level: a legal base is required as well as stronger funding for self-help support and initiatives for self-help friendliness.

Involving self-help groups in health-care institutions: the patients' contribution to and their view of 'self-help friendliness' as an approach to implement quality criteria of sustainable co-operation.

BACKGROUND: The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health-care institution policies existed to establish sustainable co-operation. In 2004, in Germany, the initiative 'Self-Help Friendliness (SHF) and Patient-Centeredness in Health Care' was launched to establish and implement quality criteria related to collaboration with patient groups. OBJECTIVES: The objective of this study was to describe (i) how patients were involved in the development of SHF by summarizing a number of studies and (ii) a new survey on the importance and feasibility of SHF. SETTING AND PARTICIPANTS: In a series of participative studies, SHF was shaped, tested and implemented in 40 health-care institutions in Germany. Representatives from 157 self-help groups (SHGs), 50 self-help organizations and 17 self-help clearing houses were actively involved. The second objective was reached through a survey of 74 of the 115 member associations of the biggest self-help umbrella organization at federal level (response rate: 64 %). RESULTS: Patient involvement included the following: identification of the needs and wishes of SHGs regarding co-operation, their involvement in the definition of quality criteria of co-operation, having a crucial role during the implementation of SHF and accrediting health-care institutions as self-help friendly. The ten criteria in total were positively valued and perceived as moderately practicable. CONCLUSIONS: Through the intensive involvement of self-help representatives, it was feasible to develop SHF as a systematic approach to closer collaboration of professionals and SHGs. Some challenges have to be taken into account involving patients and the limitations of our empirical study.

Implementing 'self-help friendliness' in German hospitals: a longitudinal study.

In Germany, the term 'self-help friendliness' (SHF) describes a strategy to institutionalize co-operation of healthcare institutions with mutual aid or self-help groups of chronically ill patients. After a short explanation of the SHF concept and its development, we will present findings from a longitudinal study on the implementation of SHF in three German hospitals. Specifically, we wanted to know (i) to what degree SHF had been put into practice after the initial development phase in the pilot hospitals, (ii) whether it was possible to maintain the level of implementation of SHF in the course of at least 1 year and (iii) which opinions exist about the inclusion of SHF criteria in quality management systems. With only minor restrictions, the findings provide support for the usefulness, practicability, sustainability and transferability of SHF. Limitations of our empirical study are the small number of hospitals, the above average motivation of their staff, the small response rate in the staff-survey and the inability to get enough data from members of self-help groups. The research instrument for measuring SHF was adequate and fulfils the most important scientific quality criteria in a German context. We conclude that the implementation of SHF leads to more patient-centredness in healthcare institutions and thus improves satisfaction, self-management, coping and health literacy of patients. SHF is considered as an adequate approach for reorienting healthcare institutions in the sense of the Ottawa Charta, and particularly suitable for health promoting hospitals.

Self-help friendliness: A German approach for strengthening the cooperation between self-help groups and health care professionals.

Public and patient involvement in social and health care has proceeded in many civil societies. Depending on the legislations on national and community levels, citizens and patients have a greater say in shaping social and health care. In Germany, the patient involvement by self-help organizations at the macro level (national level and level of federal states) has significantly developed over the last ten years. At the meso level, however, the patient involvement is neither such far nor such systematically developed. The concept of self-help friendliness (SHF) in health care is a patient centred model that allows the development and implementation of patient participation in different health care institutions: hospitals, ambulatory medical care, public health institutions, rehabilitation facilities etc. In a series of projects on SHF we have (1) analysed the needs and wishes of self-help groups for cooperation with health care professionals as well as their experience, (2) gathered facilitators and barriers concerning the cooperation between self-help groups and hospitals, (3) developed a framework concept for SHF in hospitals including eight quality criteria for measuring SHF, and (4) implemented the framework of SHF in about 40 health care institutions (www.selbsthilfefreundlichkeit.de). Further projects followed: development of an instrument for measuring SHF in hospitals, integration of SHF-criteria in quality management systems in inpatient care as well as in out-patient care, and transferring SHF to a) medical ambulatory care, b) public health departments, and c) rehabilitation facilities. Considering advantages and shortcomings of the approach, we can summarize that implementing SHF is feasible, transferable and a helpful measure for promoting patient centeredness in health care.