Self-Pall - Self-Help and Hospice and Palliative Care – Opportunities, barriers, and needs
Grant ID/Project Number: 70116240
Project Period: July 1, 2025–June 30, 2027
Funding Agency: German Cancer Aid
Previous research findings indicate that self-help groups have positive effects, as they provide people with the opportunity to interact with others facing similar challenges, experience companionship and a sense of community, and benefit from the experiences of others. This raises the question of the extent to which self-help can provide support for people with severe, progressive, and incurable cancer and other diseases. Family members and close non-relatives of people with these conditions also find themselves in life situations where they could benefit from the support of others facing similar challenges.
Nevertheless, it remains largely unknown to what extent self-help plays a role in hospice and palliative care, or to what extent hospice and palliative care plays a role in self-help. From reports by those affected, we know that it is difficult for palliative care patients to find a suitable self-help group. At the same time, in recent years, for example, metastasis self-help groups have been established within the cancer self-help community. It remains largely unclear to what extent patients and their loved ones in hospice and palliative care have a need for self-help and whether they are aware of the support that self-help can offer.
Factors that promote or hinder self-help activities at the individual and structural levels have not yet been explored, particularly given the often fluid transition between curative and palliative care. Conclusions regarding which forms of self-help activities are suitable for patients with incurable, advanced-stage cancer and their relatives are scarcely supported by previous studies. How structural and political conditions influence the interaction between self-help and hospice and palliative care remains unclear.
The aim of this study is to examine how patients and family members in hospice and palliative care are aware of and utilize self-help services, how existing self-help groups address issues surrounding dying and death, how self-help and palliative care already collaborate, and what conditions must be created to optimize cooperation between these two areas of care.
Beginning with a scoping review to compile an overview of the existing literature, this study aims to use interviews with experts in self-help, hospice and palliative care, as well as patients and their relatives, to gain insights into the intersection between self-help and hospice and palliative care, existing needs, and facilitating and hindering factors. In a further step, focus groups with experts, patients/family members, representatives of the public, and other interest groups (self-help group associations, municipalities, operators and associations of health and social care institutions, etc.) help to determine to what extent care can be improved through networking and potential mutual referrals between palliative care and self-help, and at which levels and on which topics measures should be recommended. Recommendations for action will be drafted, agreed upon within a consensus-building process with experts of professional or experiental knowledge, and made freely available to the public.
The entire research process, beginning with project and grant proposal development, is characterized by the active involvement of members of a local Patient and Public Involvement group composed of residents of the region. As quality assurance through evaluation of the methodological approach, a scientific advisory board contributes additional expertise.
Contact
Manuela Schneider (Manuela.Schneider@uk-erlangen.de)
Saskia Kauzner (Saskia.Kauzner@uk-erlangen.de)
