Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review.

OBJECTIVES: There is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research. DESIGN: The scoping review was conducted according to the methodological framework of Arksey and O'Malley. Studies of various designs involving kin caregivers were analysed narratively. DATA SOURCES: A highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed. RESULTS: Two authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers' wishes and needs for support. CONCLUSIONS: Further quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.

[Implementing an intermediate level of outpatient palliative care in Germany: Experiences and views of specialised outpatient palliative care teams]. / Implementierung der "Besonders qualifizierten und koordinierten palliativmedizinischen Versorgung" (BQKPMV) ­ Erfahrungen und Sichtweisen von SAPV-Teams.

INTRODUCTION: In the course of the implementation of the German Hospice and Palliative Care Act of 2015, an agreement was reached to establish an intermediate level of outpatient palliative care (BQKPMV) in Germany. By its degree of specialization, this form of care is located between generalist and specialist outpatient palliative care (AAPV/SAPV). It is still unclear which experiences the SAPV teams have gained with the approach of BQKPMV and how it affects their care routines. METHODS: Between May and August 2021, the project team developed and tested a questionnaire for SAPV teams about their experiences with and views on BQKPMV as a care approach at the interface to SAPV. In September 2021, all 58 teams providing SAPV in Lower Saxony were invited to participate. The information provided by the participants was analyzed using descriptive statistics and frequency analyses. RESULTS: With 52 participants (78% female; mean age of 50 years), a participation rate of 89.7 % was achieved. Twenty-eight participants indicated that they were aware of BQKPMV and its content, and 10 had received a request for cooperation under the BQKPMV program. Fifty percent of these 10 requests (n = 5) led to a cooperation agreement. The following questions were answered only by participants who were familiar with the content of BQKPMV (N = 28). For a majority of 15 participants, the BQKPMV has (rather) no part in day-to-day care in SAPV. From the participants' point of view, BQKPMV largely fails to supplement the existing regulations of SAPV in a meaningful way (n = 14 is not [likely] true), to promote smooth transition between the forms of outpatient palliative care (n = 13 is not [likely] true) and to facilitate communication among the professionals involved (n = 13 is not [likely] true). DISCUSSION: These results show that the participating SAPV teams know little about BQKPMV and that there has been little cooperation at the interface between SAPV and BQKPMV. In day-to-day care, there is a clear separation between SAPV and BQKPMV provided by general practitioners, which corresponds with the proposition of the legislator by excluding simultaneous provision of both forms of care. The close cooperation between general practitioners and SAPV teams, which is also required under the agreement regarding BQKPMV, leads to challenges in day-to-day care. CONCLUSION: It remains unclear whether and to what extent the close cooperation envisaged in the framework of BQKPMV can be put into practice at the interface between general practitioners and SAPV teams in their daily routines. Practical recommendations for advancing BQKPMV are needed, which, for example, address the exclusion of the simultaneous provision of both forms of care. Further developments of BQKPMV should aim at establishing a framework in which the tasks and duties of health care provision are distributed and remunerated in accordance with the competencies and resources of health care providers.

Improving primary palliative care - a Delphi consensus study on measures for general practice in Germany.

BACKGROUND: The majority of severely ill and dying people in Germany can be administered primary palliative care (PPC) by general practitioners (GP). However, the current provision of PPC does not match the needs of the population. Although several public health strategies aim at strengthening the role of GPs in PPC provision, it remains challenging for GP teams to integrate PPC into their daily routines. AIM: A Delphi study with GPs was conducted to achieve consensus on specific measures for improving the integration of PPC into everyday GP practice. METHODS: The study is part of the junior research project "Primary Palliative Care in General Practice" (ALLPRAX). After having developed, tested and evaluated 26 practical measures for GP practices to improve their PPC, a Delphi consensus study among GPs took place. In 2020, 569 GPs were asked to rate the relevance and feasibility of the measures on a 4-point Likert scale via an anonymous online questionnaire. Consensus was defined as a sum percentage of 'strongly agree' and 'somewhat agree' responses ≥75% after two rounds. Between these rounds, measures that were not consented in the first round were adapted in light of respondents' free text comments and suggestions. RESULTS: The response rate was 11.3% in round 1 (n = 64) and 53.1% in round 2 (n = 34). From the initial n = 26 measures, n = 20 measures achieved consensus and were included in the final intervention package. The consented measures pertained to four main topics: advance care planning with patients, consulting and informing patients and family caregivers, GP office organisation and continuing education. N = 6 measures did not achieve consensus, predominantly due to time and workload constraints. CONCLUSION: The consented measures provide valuable support to improve the provision of PPC by GPs. They can be used freely and flexibly, according to the needs of individual GP teams, and are thus suitable for implementation nationwide. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (Registration N° DRKS00011821; 4 December 2017; https://apps.who.int/trialsearch/ ) and the German Register of Health Care Research (Registration N° VfD_ALLPRAX_16_003817; 30 March 2017).

Analysing the administration of an intermediate level of outpatient palliative care in Germany and developing recommendations for improvement (Polite): A study protocol for a mixed-methods study.

BACKGROUND: To date, there has been no systematic research on the intermediate level service (level 2) in outpatient palliative care that was introduced in Germany in 2017. Accordingly, the Polite research project aims at: (1) investigating the current state of level 2 palliative care and (2) developing recommendations for its optimisation. METHODS: The multi-perspective, observational study will follow a mixed-methods approach across two study phases. In phase 1a, quantitative routinely collected data from a statutory general local health insurance provider will be used to identify patients who received level 2 or other outpatient palliative care in the years 2017-2019. In phase 1b, a questionnaire will be sent to all registered general practitioners (GPs) in Lower Saxony to collect information on the number and characteristics of physicians offering level 2 palliative care. In phase 1c, a quantitative, standardised online questionnaire for teams providing specialised outpatient palliative care will be administered to assess the interfaces of level 2 palliative care. In phase 2a, the results from phases 1a-c will be discussed in an expert workshop with the aim of developing ideas to adapt and optimise level 2 outpatient palliative care. Finally, in phase 2b, the empirically derived recommendations from phases 1 and 2a will be agreed upon via a multi-round Delphi survey involving experts with sufficient influence to promote the project results and recommendations nationally. DISCUSSION: The results of the project will facilitate the optimisation of outpatient palliative care, as well as its administration, nationwide. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024785); date of registration: 06th May 2021) and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.