Centre for Psychosocial Medicine, Institute of Medical Sociology, Institute of Medical Sociology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Health Expect. 2022 Dec;25(6):3005-3016. doi: 10.1111/hex.13608. Epub 2022 Sep 21.
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.
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.
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.
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.
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.
同伴支持越来越被认为是改善肿瘤患者医疗保健和心理社会结局的关键。近年来，癌症自助团体（SHG）融入癌症护理机构的重要性日益增加。然而，我们对于癌症护理机构与 SHG 之间合作的程度和质量以及它们融入常规护理的情况知之甚少。自助友好性（SHF）的概念为衡量合作和整合提供了一种可行的工具。
一项在德国开展的横断面研究调查了 266 名癌症 SHG 领导人对其与癌症护理机构合作的经验，这些合作是基于 SHF 的标准。该参与式研究是与癌症自助之家的代表和癌症自助联邦协会共同开发和进行的。
根据 SHG 领导人的说法，他们的成员中约有 80%主要是通过其他患者了解到 SHG，只有不到 50%的人或多或少是通过医院或康复诊所了解到的。然而，超过 70%的受访者对与癌症中心、医院和康复诊所的合作质量评价为好到非常好。SHF 的 9 项质量标准中有 10 项得到了充分或至少部分实施，这些值在 53%至 87%之间。总体而言，58%的 SHG 领导人感觉自己很好地融入了护理机构。
研究结果表明，SHG 参与肿瘤学护理的评价是积极的，但住院和门诊护理之间存在差异，且 SHG 的转诊率较低。SHF 的概念是系统地衡量和衡量 SHG 参与的可行解决方案。
通过定性访谈获得的患者代表的观点和见解直接纳入了本研究。癌症自助组织的代表参与了问卷的开发，对其内容和可理解性进行了审查，并进一步帮助招募参与者。
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