Introduction

Being diagnosed with a serious, progressive and life-limiting disease, e.g., cancer, can be linked to enormous psychological distress for patients besides the disease-related symptom burden [1,2]. Also family caregivers – especially when caring for the ill family member at home – experience high emotional burden and this can affect health and quality of life [3,4]; they often express an unmet need for emotional and social support in their caring situation [3,5–7]. In addition to other psychosocial support services, health-related collective self-help could be supportive in the sense of a coping strategy for patients and their family caregivers as they facilitate interaction with others in a similar situation [3,8,9]. In Germany, refers to a national concept that is stipulated by law [10]. From an international perspective, we often came across concepts such as or that are similar to the German concept of self-help and refer to people with the same or a similar disease who share their lived experience [11,12]. The German professional association for self-help (Deutsche Arbeitsgemeinschaft Selbsthilfegruppe e.V.) describes the aim of collective self-help as enabling disabled and chronically ill people, as well as their caregivers, to exchange information and experiences, to promote self-determination and personal responsibility, representing their interests in public, and promoting inclusion [13]. In Germany, self-help is mainly organised through local groups, initiatives, organisations, and contact points [14]. At state or federal level, self-help support services and associations help to establish and disseminate local self-help services [15].

Positive effects of self-help for patients, e.g., with diabetes mellitus type 2, prostate cancer, multiple sclerosis, have been shown in terms of promoting empowerment [16], coping strategies, and disease-related knowledge [17]. A recent systematic review synthesised perceived benefits of participating in a peer led self-help group for cancer patients, namely informational support, shared experience, learning from others, helping others as well as cultivating humor as a coping strategy [18]. For family caregivers, participating in a support group program increased perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving whereas there were no significant effects regarding hope, anxiety, depression symptoms and health [19].

However, limited evidence is available on how self-help could support patients with serious, progressive, and life-limiting diseases, as well as their family caregivers, at the end of life and during bereavement, and whether there are barriers. To date, self-help services for hospice and palliative care patients do barely exist in Germany and seem to be rather unknown. Furthermore, it is unclear whether patients and their caregivers recognise the need for self-help services or notice their supportive nature.

At the same time, we do not know what role hospice and palliative care play within self-help groups, especially when dealing with dying, death, and grief. Experience reports from people actively involved in German self-help services confirmed and some even reported `the tendency for self-help groups to withdraw from end-of-life care` [20]. In addition, it remains unclear how structural and political conditions influence the interaction between self-help and hospice and palliative care.

To address these research gaps, the project asks the following research questions:

1. 1) To what extent can self-help provide support for people with serious, progressive, and life-limiting diseases and their families?
2. 2) To what extent do the topics of dying, death, and grief, as well as hospice and palliative care, play a role in self-help?
3. 3) To what extent do self-help services and hospice and palliative care services currently overlap?

Findings will inform recommendations and key principles to further support and strengthen the interaction between self-help and hospice and palliative care in Germany. The recommendations will be tailored to different actor groups, e.g., self-help organisations and associations, self-help activists, hospice and palliative care providers, institutions, associations, and the public to provide low-threshold guidance on different action levels.

Methods

Study design

The Self-Pall project will examine the interaction between health-related collective self-help and hospice and palliative care using a qualitative, multi-method, sequential research design. The project started in 07/2025 and will end in 06/2027. We will assess personal and professional experiences with focus on opportunities, barriers, and needs by conducting semi-structured interviews with patients, informal caregivers, representatives of self-help organisations, and representatives of hospice and palliative care services and organisations. Recruitment for the interviews started in 11/2025 and will be continued during analysis of interview data until approximately 07/2026. Recommendations and key principles will be derived from the interview data. We will then use focus group discussions with representatives of each target group to confirm and adapt the first draft of the recommendations, and explore additional issues [21,22]. The recommendations will be refined and agreed upon by representative experts through an iterative, multi-level Delphi process. We expect the final recommendations to be finalized until 04/27. We will adhere to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [23] and the reporting standard for Conducting and Reporting of Delphi Studies (CREDES) [24]. See Fig 1 for an overview of the work process.

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Fig 1. Overview of work process.

https://doi.org/10.1371/journal.pone.0350453.g001

The engagement of a Patient and Public Involvement (PPI) group ensures that the perspectives of patients` and the community are considered, emphasise the relevance of our research to the public and provide transparency regarding the research process [25]. A scientific advisory board provides additional methodological support.

Ethics approval was granted through the Ethics Committee of the Faculty of Medicine, FAU Erlangen: 24-46-S, 20.02.2024. The study is registered at The Open Science Framework (https://doi.org/10.17605/OSF.IO/ZC23E; date of registration: 02/09/25) and the Central Study Register of University Hospital Erlangen (https://studienregister.uk-erlangen.de/details/mdpldbrrglav; date of registration: 11/09/25).

Discussion

This project aims at developing recommendations and key principles regarding adequate forms of self-help for patients with serious, progressive, and life-limiting diseases and their informal caregivers. For this purpose, we will explore awareness, needs, and factors that promote or hinder self-help activities from the perspective of patients, their caregivers, and professionals in hospice and palliative care. We expect certain characteristics related to an individual`s sociocultural background, age, gender, or type of illness to influence the outcome. Our results will shed light on indications as to whether timely integration of palliative care into the course of the disease can be facilitated by self-help and to what extent collective self-help can meet the needs of patients with serious, progressive, and life-limiting diseases and informal caregivers for exchange and information, as well as for relief in the care situation. From a self-help perspective, we will explore how to deal with dying, death, and grief, as well as knowledge and use of hospice and palliative care services, and potential for barriers of using those services. With our results, we expect to further support and strengthen the interactions between self-help and hospice and palliative care in Germany to improve patient care in long-term providing recommendations tailored to different actor groups.

As a strength of our study, we will use a multi-method approach with PPI. The best practice recommendations and key principles will consider both the hospice and palliative care and the self-help perspective and will be freely accessible. Our results will be relevant and generalizable to international contexts as the concept of self-help matches international concepts of peer support. Nevertheless, culture-bound differences in peer support should be examined in more detail in future research [35]. As digitization in healthcare proceeds, self-help services are also provided more often as online format [36]. We expect our results to reveal significant insights fostering digital services as extension to traditional self-help formats.

In line with other authors, we see possible barriers for our research. Self-help is not a universal concept or programme and therefore self-help groups and activities may vary, which could affect the interpretability of our results [37]. We will ask for an individual definition of self-help in our interviews to consider this during data analysis and interpretation. In their review, Hitch et al. pointed out that possible unintended negative effects may occur in attending self-help activities, that self-help groups are not equally suitable for all individuals, and that certain intrapersonal and extra-personal conditions must be in place for them to be successful [38]. In a German study, patients who did not participate in self-help groups stated fears of negative effects, such as feeling uncomfortable in a group situation and worrying about being confronted with the suffering of others [37]. When interviewing patients and their caregivers, we will be aware of the potential for negative experiences with self-help and we will be mindful of the emotional state of patients and their caregivers when discussing personal illness or bereavement. For this reason, we will make it clear that they can stop the interview at any time and we will provide additional support if required.

There could be difficulties recruiting participants for the interviews, focus group discussions and Delphi survey. To collect data on nationwide structures and interactions, we will reach out to people across the country through our connections with German professional associations and organisations. However, we expect the majority of participants to be local, but including professional literature would cover interactions between self-help and hospice and palliative care nationwide.

Conclusions

This study is to the best of our knowledge the first to explore interactions and gaps between self-help and hospice and palliative care bilaterally and – based on those findings – to develop practical recommendations and key principles with significant implications for practice and patient care. In doing so, we emphasise the potential of collaboration between the two healthcare actors for patients with serious, progressive, life-limiting diseases and their caregivers that has been overlooked so far. Furthermore, we hope to raise awareness of self-help and hospice and palliative care services, and to reduce the fear of seeking for help and support among those who are affected by personal illness, a care situation, or bereavement.

Supporting information

Acknowledgments

We would like to acknowledge our PPI contributors and the members of the scientific advisory board who will be engaged and we would like to thank all partners of our network who ensured their support for this project in advance.