[Need for Further Training for Function Holders of Cancer Self-Help Organizations]. / Bedarf an Fortbildung für Funktionsträger*innen von Krebs-Selbsthilfeorganisationen.

OBJECTIVE: As part of the Center for Competence Development in Cancer Self-Help at the University Medical Center Freiburg, an analysis of the need for training and education was conducted among the member organizations of the House of the Cancer Patient Support Associations of Germany (HKSH). METHODS: The online survey took place from February to April 2021 and was completed by functionaries at various organization levels and group members. In a questionnaire developed together with self-help representatives 19 potential training topics were ranked in terms of importance. In addition, it was indicated whether the respective topic was perceived as sufficiently covered by already existing qualification offers. Using a forced-choice approach, respondents finally named the five most important topics for them. RESULTS: The topics that a particularly high proportion of the N=293 respondents identified as "very important" and which at the same time were perceived as inadequately addressed by existing qualification offers were dealing with stressful issues (e. g. relapse, metastases, dying), recruiting new members and successors for association tasks, socio-legal aspects, as well as conversational and communication skills. In the prioritization of the five most important topics, the first three topics were named again, with dealing with excessive demands and assistance for self-care/burnout prevention following in fourth place and in the fifth place the topics of knowledge in dealing with complementary medicine and knowledge of professional care structures in oncology, each with the same number of votes. DISCUSSION: There was a clear need for a broad range of training topics that goes beyond the existing offers of the cancer self-help organizations. Through the needs analysis, the topics could be identified which are prioritized as training topics across all ten member organizations of the HKSH. CONCLUSION: Based on this needs assessment, the respective training courses can be prioritized and implemented in cooperation with the patient representatives of the HKSH.

Benefits and challenges of cancer peer support groups: A systematic review of qualitative studies.

INTRODUCTION: Although cancer self-help groups (CSHGs) have increased in importance in recent years, certain aspects have not yet been sufficiently investigated in studies to date. In particular, little is known about members' experiences in face-to-face peer led CSHGs. This systematic review aims to synthesise qualitative studies documenting personal experiences of CSHG members and to enlighten group processes and mechanisms. It focuses on benefits and challenges of participating in face-to-face CSHGs in studies based on qualitative research. METHODS: MEDLINE, PsycINFO and PSYNDEX were used to identify relevant studies published from January 2000 to April 2022. RESULTS: Of the 978 studies screened for eligibility, 20 studies were included in the review and were methodologically assessed using the Critical Appraisal Skills Programme. All included studies consistently indicate that participation in a peer led CSHG leads to multiple perceived benefits, that is, informational support, shared experience, learning from others, helping others as well as cultivating humour as a coping strategy. Additionally, various challenges in CSHGs were identified, that is, confrontation with the suffering of others, divergent information needs, distressing group dynamics and challenging aspects concerning leadership and sustainability. CONCLUSION: This indicates that groups need low-threshold offers to be able to organise support in case of need.

Transfer of the presence seminar concept "Peer-support and Patient Competence" with participation of patients sharing their experience into a virtual teaching format.

Background: In the innovative seminar "Peer-support and Patient Competence", which was conceived as a face to face course, we teach various concepts of patient competence and invite patients to report about their illness experience and peer-group activities. Method: Implementation of a face to face course into a virtual format via video conference. Result: Despite concerns regarding the sensitive topic and technical challenges, the conversion of the seminar with interactive character, which was originally designed in a face-to-face format, into a virtual one was successful. Both lecturers and participants experienced the seminar as satisfactory. Conclusion: In times of Covid-19, this virtual course experience can encourage colleagues to restructure their face to face seminars into innovative and virtual teaching formats.

Educational Program in Complementary and Alternative Medicine for Cancer Self-Help Groups.

BACKGROUND: The use of complementary and alternative medicine (CAM) among cancer patients is estimated to be approximately 40%. In self-help groups there is a need for information about CAM. This pilot study aimed to develop and evaluate a CAM educational program for cancer self-help groups. METHODS: The educational program was developed in cooperation with health professionals and representatives of cancer self-help organizations. Participants were trained to increase their knowledge about CAM, to reflect their user behavior, and to use evidence-based information. Self-help group leaders were educated along the curriculum and motivated to carry out the course in their groups. Using questionnaires it was evaluated in terms of acceptance, feasibility, and satisfaction by participants. RESULTS: A total of 171 self-help group leaders were educated. In a pilot run 7 implemented the course in their groups, with a total of 70 participants. Most of them (n = 60, 85.7%) appreciated its contents and material and would recommend it. Overall acceptance and satisfaction were high. CONCLUSIONS: The educational program was implemented successfully in a small sample and showed positive results for acceptance and feasibility. In addition to consultation by experts, it can be a good option to inform cancer survivors about CAM.

Education and employment status of adults with autism spectrum disorders in Germany - a cross-sectional-survey.

BACKGROUND: Adults with autism spectrum disorders (ASD) experience challenges in participating in the labour market and struggle to achieve and maintain appropriate professional positions, possibly due to impairments of communication and social interaction. Studies have shown high rates of unemployment as well as evidence of inadequate employment. As knowledge on the participation in the German labour market is scarce, the aim of our study was to examine employment status, type of occupation and inadequate employment in a sample of clinically mostly late-diagnosed and most likely not intellectually disabled adults with ASD in Germany. METHODS: We conducted a cross-sectional-survey in clinically mostly late-diagnosed adults with ASD. Employment status, type of occupation, and the level of formal education and training were examined through a postal questionnaire. Inadequate employment regarding participants' current and longest practised occupation was assessed by transforming participants' information into skill levels of the "Classification of Occupations 2010" of the German Federal Employment Agency, and comparing these with participants' level of formal education and training. RESULTS: The response rate was 43.2% (N = 185 of N = 428 potential participants). 94.6% were first-time diagnosed when being 18 years of age or older. 56.8% held a general university entrance-level qualification and 24.9% had obtained a Masters' or diploma degree as their highest vocational qualification. 94.1% had been employed at some time. Of these, 68.4% reported being currently employed, 13.5% being currently unemployed and 17.0% being retired for health reasons. Regarding the longest-practised and the current occupation, the highest proportion of participants was found in the occupational area "health and social sector, teaching and education" (22.4% and 23.3%, respectively). With respect to inadequate employment, 22.1% were found to be overeducated in relation to their longest-practised occupation and 31.3% in relation to their current occupation. This is significantly higher than the percentage of overeducation in the general population. CONCLUSIONS: Despite largely high formal qualifications, the clinically mostly late-diagnosed adults with ASD represented in our sample are disadvantaged regarding their participation in the German labour market, especially with respect to rates of unemployment, early retirement and overeducation. Employment support programs should be developed to improve employment outcomes.