ABSTRACT
BACKGROUND: Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices. METHOD: Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included. FINDINGS: Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies. CONCLUSIONS: The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support. OTHER: This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).
ABSTRACT
BACKGROUND: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).
Subject(s)
Consensus , Delphi Technique , Focus Groups , Palliative Care , Humans , Germany , Palliative Care/standards , Palliative Care/methods , Focus Groups/methods , Day Care, Medical/standards , Day Care, Medical/methods , Female , Middle Aged , Male , AdultABSTRACT
INTRODUCTION: A needs-based and patient-oriented hospice and palliative care also includes day hospices as a specialised semi-inpatient care offer. The establishment and development of these facilities in Germany has been rather unsystematic. In order to ensure quality and adequacy of these structures, research is needed. METHODS: A Delphi consensus study was conducted online from November 2022 to February 2023 aiming at generating recommendations for the development and expansion of day hospices in Germany. For each recommendation, the participants indicated on a four-point verbal rating scale how much they agreed upon a) the relevance and b) the feasibility of the recommendation. Items were considered consented when 80% of the participants (strongly) agreed with the recommendation regarding both criteria. If no consensus was reached, the recommendations were revised according to the participants' free text comments and presented in the next Delphi round. Descriptive analyses were applied. RESULTS: A total of 64 experts participated in the first Delphi round and 44 in the second. In round 1, 34 recommendations and in round 2 six recommendations were consented. The final set contains a total of 40 recommendations: 18 on the tasks of day hospices, 13 on cooperation, 7 on funding, and 2 on public relations. DISCUSSION: Recommendations for the development and expansion of day hospices in Germany were developed. Due to their highly rated feasibility, the recommendations should be directly transferable into care practice. It remains to be seen to what extent they will be taken into account in the renegotiation of the framework agreement for day hospices. CONCLUSION: The Delphi-consented recommendations provide a basis to guide action in the currently very dynamic development of hospice work and palliative care in Germany.
Subject(s)
Hospice Care , Hospices , Humans , Germany , Palliative Care , Consensus , Delphi TechniqueABSTRACT
Purpose: In Germany, patients with incurable chronic diseases living at home increasingly have the option of using outpatient and day care hospice and specialized palliative care services. The present study examined and compared patients' and their relatives' preferences for end-of-life outpatient and day care services. Patients and Methods: The study used a questionnaire integrating a discrete choice experiment. For six scenarios, participants chose between two hypothetical end-of-life care offers, described by seven attributes. The model compared place of care, frequency and duration of care and support, specialized medical palliative care, accompanied activities, and relieving patient counselling. The model also included optional overnight care and willingness to pay. Patients and the relatives of patients suffering from incurable, chronic diseases who were not yet receiving palliative care were recruited via hospitals and self-help groups (06/2021-07/2022). Results: The results were based on data from 436 questionnaires (patients: n=263, relatives: n=173). All attributes had a statistically significant impact on choice decisions, with place of care showing the greatest importance. All respondents highly preferred care in the patient's home over out-of-home care. Patients stressed the importance of special medical (palliative) care and valued accompanied activities, often facilitated by hospice volunteers. Relatives, but not patients, considered the frequency and duration of care highly relevant. Conclusion: The results suggest a higher demand for care in the patient's home than for out-of-home care. Patients' and relatives' high preference for special medical care and the relief of family caregiver burden should be considered in the design of day care services.
ABSTRACT
Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.
