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

Abstract 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.

with different common diagnoses such as leukaemia, lymphoma and brain tumour, with much lower incidence rates and higher survival rates. 2 Because of demographic change and due to the close association between the risk of cancer and age, the incidence of a cancer diagnosis is increasing. 1 At the same time, in Germany and in all other countries with advanced health care systems, cancer survival rates have significantly improved due to more precise and early diagnostics, and advanced treatment options. 1,3,4 Next to the highly distressing cancer diagnosis itself, many cancer patients have to face challenges in complex decision-making concerning different treatment options. With regard to the long-term consequences of a cancer diagnosis, psychosocial and economic impacts as well as legal matters, patients require skills and competencies for navigating manifold cancer-related health and social services on offer. 5,6 However, many patients do not have the appropriate knowledge to make informed decisions at the onset of cancer. [7][8][9][10] Moreover, directly after the diagnosis, it is difficult for patients to assess the implications of the cancer diagnosis for their everyday lives and their future plans. [10][11][12] Here, support and advice from other cancer patients is a helpful resource for emotional stabilization and overcoming uncertainty. 13 Research has shown that cancer peer support for adult patients is an effective complement to professional health care, foremost by providing psychosocial relief and addressing unmet support needs of cancer patients, specifically those related to their daily life. [14][15][16][17] It fosters the empowerment of cancer patients to cope better with their disease and to find ways and solutions for adequate selfmanagement. 18,19 The main resource of nonprofessional psychosocial support are cancer self-help groups (SHGs) which are peer support groups of individuals with the same disease who meet outside professional settings in nonhierarchical relationships on a voluntary basis. Most SHGs operate at a regional level and also work as a care policy catalyst to improve the quality of care in the professional health care system. This, in turn, can lead to improved quality of life in cancer patients and better health outcomes. 15,[19][20][21] In Germany, there are about 100,000 SHGs (predominantly smaller informal groups at a regional level) and nearly 300 more organized health-related self-help organizations (SHOs) at the national level and subdivisions at the federal state level. They cover manifold health-related topics such as cancer. 22 Most of the SHOs are members of nationwide umbrella organizations that represent superordinate collectives. SHGs are supported by a professional selfhelp support system consisting of more than 300 self-help clearing houses, which maintain additional branch offices providing professional support services for community self-help in 347 locations in Germany. Funding for self-help, of which cancer self-help is a large part, stems mainly from the statutory health and long-term care insurances, the public sector (federal, state and local authorities) and private donors (sponsors and foundations, such as the German Cancer Aid) next to membership fees. 22 In the framework of patient-centredness, patient participation and patient involvement have become important goals in health care and health care regulations. [23][24][25] Over the past decades, peer support has been increasingly recognized as a key part of effective supportive care in cancer services. As SHGs represent patient involvement on a collective level, 26,27 the integration of cancer SHGs into oncological care has consequently gained importance in the context of patientcentredness. 28 Thus, and as a response to the ongoing demands of patient groups and organizations, health decision makers made efforts to promote SHGs and to support their integration into routine cancer care, [29][30][31][32] where they work as peer counsellors or as patient representatives to enhance the quality of care.
One attempt to strengthen the collaboration between health care providers and SHGs in Germany is represented by the concept of 'Self-Help Friendliness in Health Care'. In 2004, a group of stakeholders within the German self-help system and representatives from various health care institutions started a consensus process over several years with the aim to develop, evaluate and implement quality criteria for sustainable collaboration between health care institutions and patient groups. [33][34][35]  shown that health professionals perceive SHGs as predominantly positive, however, misconceptions about SHGs and lack of collaboration with SHGs still persist. 16,[38][39][40] Studies have further demonstrated that health care professionals play a key role in informing and referring patients to SHGs. They can strongly influence a patient's motivation and decision to join an SHG. [39][40][41][42][43] Thus, overall, a close collaboration between SHGs and health care staff in cancer care is crucial.
This study provides quantitative data on the collaboration

| Study sample
The survey was directed at all SHG leaders of the 10 SHOs and of those registered at the regional cancer societies in Germany. SHGs, defined as self-determined, voluntary groups with the primary purpose of providing support to people with cancer, were considered for this study.
A total of 266 leaders of cancer SHGs participated in the study, ranging from 37 to 84 years of age (Table 1)

| Measures
The questionnaire contained questions on eight domains about the SHGs: general information about the group, goals, and activities of the group, digitization (use of media, internet and challenges), access routes to the SHG, needs of the participants, health literacy of the participants, cooperation with health care providers and patient participation in ZIEGLER ET AL. | 3007 health care (SHF) and activities as SHG leaders. This article focuses on two of these eight topics, namely access routes to the SHG as well as cooperation and participation as indicators for integration and SHF.

| Access routes to the SHG
The SHG leaders were asked to assess how often patients usually find their way into their group through 11 given channels such as

| SHF
To assess whether and in how far integration of SHGs takes place at all, the SHF criteria served to operationalize the level of integration.
The measurement of SHF in health care institutions was based on the German survey instrument for 'Self-help-oriented Patientcentredness' (SelP-K). 44 The SelP-K has been developed in previous research on the evaluation of SHF in hospitals. 20,45 The items represent the quality criteria that were consensually developed by representatives from self-help and various health care institutions within the framework of the model project 'Quality Seal Self-Help-Friendly Hospital' in Hamburg. The questionnaire was tested and validated within a previous research project. 44,45 The original SelP-K instrument contains a 10-item subscale measuring the indicators for SHF from the view of health care staff with a very good internal consistency of α = .93 44,45 and was adopted for this study. We modified the wording of the 10 statements from 'very true' to 4 'not true at all' (see Appendix). 43 The internal consistency of the adapted scale remains very satisfying: α = .90.

| Global assessment of integration in health care facilities
One further item used in our study contained a global assessment of the integration of SHGs in health care institutions. SHG leaders were asked how well they feel integrated into care facilities, overall, with a rating on a 4-point Likert scale with either 'poor', 'fair', 'good' or 'very good'.

| Statistical analyses
Data analysis was performed using IBM SPSS Statistics 26. Due to the explorative nature of the study, descriptive statistics were used to examine the sociodemographic features of the participants, the quality of cooperation and the extent of SHF in cancer care facilities.
Bivariate analyses were performed to assess correlations with regard to the relationship between the overall SHF score and other variables of interest. In particular, cross-tabulation analyses (η) were conducted for metric and categorical variables. 46 Spearman's ρ correlations were calculated for ordinal and metric variables. 46 The quality of cooperation with cancer care facilities such as cancer centres, hospitals and rehabilitation clinics is rated as good to very good by more than 70% of the SHG leaders ( Figure 2). In contrast, for registered medical specialists as well as registered psychotherapists in ambulatory practices more than 40% of the SHG leaders rate the cooperation quality as fair or poor. In

| SHF
With regard to the fulfilment of the SHF quality criteria, over 50% of the respondents perceive 9 out of 10 quality criteria as being fully or rather implemented by the main SHG cooperation partners (Figure 3).
The values vary between 52.8% and 86.9%. The quality criterion 'Our SHG is involved in team meetings and/or quality management' is regarded as (rather) fulfilled by only 26.7% of the SHG leaders.

| Global satisfaction
In total, 58.1% of the respondents feel well to very well integrated

| Bivariate analyses
To assess the correlation between SHF and other variables, we used the SHF scale sum score, which ranges from 0 to a maximum of 10 points. In the calculation of the sum score, we accepted two missing values maximum, which led to valid data from 228 SHG leaders. The average SHF score was 5.9 (SD = 2.4).
Assuming that SHGs who belong to an SHO may be more professionalized and experienced in approaching care facilities for cooperation requests and, thus, may be taken more seriously by hospital staff, we examined the association of the SHF score and membership in an SHO. The association between these is very weak (η = 0.03). Similarly, we also analyzed the association of the SHF score and the involvement of SHG leaders in the certification process of cancer centres. Here, we found a moderate association of η = 0.23.
Another assumption underlying the bivariate analyses is that longer existing SHGs may experience a higher quality of cooperation, since successful cooperation may need years of establishing networks and personal relationships to and within cancer care facilities.
Yet, across all SHF criteria, the correlation of the SHF score and the age of the group did not support this assumption (r = .048, ns).
However, when assessing the fulfilment of single SHF criteria and age of the group, weak, but significant positive correlations were found (e.g., SHF criterion 10 'The cooperation with SHGs is fixed in clinical pathways, in the mission statement or similar documentation': ρ = 0.18 [p < .01], and for SHF criterion 9 'Our SHG is involved in team meetings and/or quality management': ρ = 0.14 [p < .05]).
About 196 of the SHG leaders stated that being involved in regional health policy decisions would be one of their goals. We assessed whether SHF scores were higher in those SHGs who found this goal to be achieved. The correlation is weak, but significant ( F I G U R E 3 Fulfilment of the self-help friendliness criteria (N = 262). SHG, self-help group.
individual SHF criteria, however, the correlation is higher (e.g., criterion 9 'Our SHG is involved in team meetings and/or quality management': ρ = 0.30; p < .01). The SHG goal 'cooperation with professionals' shows a significant moderate positive correlation. The hypothesis, that whenever SHF is high, the referral of patients to the SHGs in cancer care facilities is also common, is supported by a significant moderate correlation. Last, significant moderate to strong correlations exist between the SHF score and the perceived quality of cooperation with cancer care facilities (Table 3). SHGs are not suggested to all patients equally, and the potential needs for peer support are subjectively assessed by clinicians and therefore often misjudged. 16,38 Similarly, in open-ended questions of this study the respondents stressed the importance of reliable referral of patients into the groups as an indicator of successful  The care facility supports our SHG in public relations work.
The care facility has a designated contact person or representative for self-help.
The contact persons of the relevant SHGs are known in the care facility.
There is a regular exchange of experience and information between our SHG and the care facility.
Staff of the care facility are informed about the cooperation with our SHG.
Our SHG is involved in team meetings and/or quality management.
The cooperation with SHGs is fixed in clinical pathways, in the mission statement or similar documentation.