Purpose: Receiving a cancer diagnosis significantly impacts patients’ lives, and how the bad news is delivered influences patients’ trajectory, psychosocial adjustment and openness to psycho-oncological support. We explored how patients’ experiences, reactions and preferences were when receiving the news and which optimization recommendations can be made. Methods: We conducted an exploratory qualitative study with patients who enrolled in the new integrated cross-sectoral psycho-oncological care programme ‘isPO’, being enrolled 12 months post-diagnosis. Data on the main issue (i.e. perception of the moment when the diagnosis is received) were collected via telephone interviews that were fully audiotaped and transcribed. Two independent coders conducted inductive content analyses using MAXQDA. Results: Out of 38 approached patients, 23 cancer patients with 13 different tumour entities participated. They had a mean age of 54.2 (SD 16.2); n = 17 (74%) were female. Three major themes with 14 corresponding subthemes emerged: (1) patients’ experiences with the bad news delivery, including setting, mode, preparation and perceived needs; (2) patients’ reactions to the bad news, such as shock, fear and helplessness, disbelief and denial, anger and feeling of injustice, thankfulness and depression; and (3) patients’ receiving preferences, including psycho-oncological support, addressing informational needs, needs-driven comprehensive support and a competent multidisciplinary support team. Conclusions: The quality of bad news delivery and addressing patients’ needs should be strongly considered by physicians. We recommend integrating patients’ perspective on the quality management processes of breaking bad news. For providing needs-centred high-quality care, applying existing guidelines and acquiring patient-centred communication skills are central.

Background: Parkinson’s disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany.Methods: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis.Results: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals’ experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as ‘life 2.0’. They identified the lack of structured and adequate provision of information, system orientation and social awareness.Conclusions: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety.Trial Registration: German Clinical Studies Register (https://www.drks.de/DRKS00030090, No. DRKS00030090, Date of registration: 15.12.2022).

Complex public health programmes may suffer from ‘teething problems’ during their implementation in practice, especially when programmes are developed top-down without the participation of end-users and service providers. Trying out and optimising a new concept in practice with stakeholder´s participation may enhance the programme´s chance of success. In this article we describe the participatory optimisation process of a German primary prevention programme for stroke caregivers, performed before its full-scale implementation. A Participatory Action Research (PAR) approach was applied immediately after the development of the preliminary programme that was led by the professional research team. Iterative PAR-cycles were composed of: observe, reflect, plan and act. Through PAR a matured concept, containing eight Conceptual Building Blocks, was obtained. The five preliminary building blocks: `Content´, `Human resources´, `Personalised approach´, `Timing´, and `Setting´, were prioritised to be the core blocks, providing the base for individual caregiver support. Three new building blocks: `Network building´, `Communication´, and `Social safety-net´ were designated as facilitating blocks, interconnecting and safeguarding the programme. PAR was found to be vital in systematically detecting the conceptual weaknesses of the preliminary concept and in adjusting its components to the needs of the key stakeholders, before full-scale implementation.

High-quality and user-friendly patient information material (PIM) is essential for understanding and accepting a new care programme. When optimising the PIM of the integrated, cross-sectoral psycho-oncological (isPO) care programme, the design of the fifth element of the patient information strategy—the patient-friendly website—was still pending. In this paper, the iterative design process of the patient-friendly isPO website is described. We applied the participatory health research (PHR) approach to enable high levels of participation of its respective end-users (e.g., cancer survivors), service providers, and experts. The design included six steps: (1) initiation, (2) planning, (3) initial idea exploration, (4) creation of a first working version, (5) three optimisation loops, and (6) dissemination. An exploratory mixed-methods design has been used. Qualitative data collection included document analysis, interviews, and participatory action research (PAR) loops with focus groups. Finally, the quality of the newly designed website was quantitatively assessed with the UPIM-Check, a user-friendly instrument for assessing and optimising PIM. The PHR approach was indispensable for the design of our needs-oriented, patient-friendly website. Participants’ high levels of participation strongly contributed to the products’ quality. The final descriptive statistical evaluation shows that the final website was rated very good on average by its end-users.

Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.