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Abstract

Background:

Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives. Regional hospice and palliative care networks exist in various countries, aimed at facilitating cooperation among health care providers at a local level. To date, little is known about the challenges faced by these networks.

Aim:

This study aimed to explore the challenges faced by regional hospice and palliative care networks in Germany.

Design:

A qualitative study with n = 6 group discussions was conducted. Group discussions were recorded, transcribed verbatim and analysed using qualitative content analysis.

Setting/participants:

Participants were n = 19 coordinators or leaders of regional hospice and palliative care networks in Germany or persons with theoretical expertise about these structures.

Results:

Regional hospice and palliative care networks face numerous challenges relating to: (1) establishment and development, (2) infrastructure, (3) moderation, (4) public relations and information exchange, (5) education and training and (6) the development of regional care services and practices. Network moderation appears crucial for network success and is highly dependent on infrastructural conditions. A key challenge is gaining network acceptance and support from potential network partners. Specifically, this includes securing the commitment of network partners to agree on common goals, develop joint actions and standards and allocate resources effectively.

Conclusions:

Sustainable infrastructure, competent network governance and adequate resources for network members are essential for the success of regional hospice and palliative care networks. To improve networking, funding conditions should be simplified, the involvement of network partners should be improved and network coordinators should receive training in network management.

Keywords

Community networks palliative care health personnel intersectoral collaboration qualitative research

What is already known about the topic?

Regional hospice and palliative care networks may positively impact collaboration between health care professionals to improve patient care.

Certain structures (e.g. steering committees, coordinators and cooperation agreements) may facilitate networking.

Governance of regional hospice and palliative care seems important for network functioning, but the concrete challenges faced by regional hospice and palliative care networks are unknown.

What this paper adds?

Regional hospice and palliative care networks face numerous challenges relating to: (a) network development and structure, (b) network moderation, (c) infrastructure, (d) public relations, (e) education and training and (f) the development of regional care services and practices.

The active involvement of network partners is crucial, but difficult to achieve.

Challenges on the level of network development and moderation are connected to infrastructural conditions and funding structures of regional hospice and palliative care networks.

Implications for practice, theory or policy

Policymakers should establish sustainable funding conditions for regional hospice and palliative care networks to facilitate long-term network infrastructure and planning.

Coordinators of regional hospice and palliative care network should be recruited on the basis of their skills, attitudes and experience. Regular training for coordinators could improve network governance.

Members of regional hospice and palliative care networks should recognise that networking is a resource-intensive task that may impact their existing work.

Introduction

Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives.¹ This multi-professional cooperation aims at facilitating seamless interaction among all health care providers involved in end-of-life care, thereby improving the continuity of care^2,3 and enabling the physical, psychosocial and spiritual needs of patients and family members to be better addressed. In some areas (e.g. Australia,⁴ Canada,⁵ Germany,⁶ and the Netherlands⁷), regional hospice and palliative care networks operate to enhance collaboration among health care providers at a structural level. Specifically, regional hospice and palliative care networks promote the exchange of information among health care professionals from different end-of-life care providers, organise training programmes and workshops and engage in political lobbying and joint public relations.^7
–9

Research on health care networks has shown that regional hospice and palliative care networks can improve patient care (micro level), increase collaboration among health care professionals (meso level) and develop regional care structures (macro level).¹⁰ At the micro level, these structures may enhance continuity of care, pain management and overall satisfaction for patients receiving end-of-life care, as well as their relatives.⁷ At the meso level, they may facilitate the circulation of information among health care professionals through training programmes and case conferences, thereby increasing members’ willingness to cooperate. Moreover, they can reduce stress and boost professional confidence among health care providers.^11,12 At the macro level, regional hospice and palliative care networks may raise the recognition of palliative care, increase awareness and visibility of end-of-life issues and expand the scope of palliative care services available.^11,13 Structurally, regional hospice and palliative care networks may vary significantly between countries and regions, with respect to their organisational elements (e.g. coordination offices, steering committees and digital collaboration software) and degree of formalisation (ranging from cooperation contracts with all network members to non-binding verbal exchanges of information).

In several countries^14,15 and regions,^4,6,16
–18 funding structures and pilot programmes have been established to support the implementation and operation of these networks in palliative care. In Germany, a law (Gesetz zur Weiterentwicklung der Gesundheitsversorgung/GVWG) was passed in 2021 to support the establishment of regional hospice and palliative care networks.¹⁹ Since 2022, the German statutory health insurance has financially supported the coordination of networks aimed at improving multi-professional and cross-sectoral cooperation in hospice and palliative care at a district level.²⁰ Network partners may be all providers of general and specialised hospice and palliative care in the inpatient and outpatient setting (e.g. hospitals, nursing homes, specialised outpatient palliative care teams, general practitioners, hospice services, nursing services). According to the German funding structures, regional hospice and palliative care networks are operating on the level of care-management and aim to: (a) support cooperation and coordination between network members, (b) support joint public relations, (c) initiate and organise further and advanced training programmes, (d) organise regular network meetings and (e) cooperate with other regional counselling services.²⁰ While these legislative and funding changes have increased the number of regional hospice and palliative care networks, little is known about their specific challenges.²¹

National and international research on regional hospice and palliative care networks has primarily focussed on the structures and benefits of these networks.⁹ Thus, the challenges of networking, itself, remain underexplored. The present study aimed at addressing this gap in the literature by investigating the challenges faced by regional hospice and palliative care networks in Germany, across different networking dimensions.

Methods

Design

The prospective, observational, mixed-method HOPAN-study aims at exploring and analysing regional hospice and palliative care networks in Germany.²² Within the framework of the HOPAN-study, we implemented a qualitative descriptive design to develop a maturity model for regional hospice and palliative care networks through group discussions with networks’ leaders and experts.²³ Through this development process of the maturity model, we systematically explored and analysed the challenges faced by regional hospice and palliative care networks. The methodology and reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).²⁴

Ethics

Ethical approval was granted by the Ethics Committee of Hannover Medical School on 20 August 2022 (N° 10424_BO_S_2022). All participants provided written informed consent.

Setting

Regional hospice and palliative care networks are networks of end-of-life health care providers. They exist in numerous districts across Germany and aim at improving cooperation among hospice and palliative care providers at a structural level (by, e.g. initiating joint training courses, creating new care services and engaging in joint public relations).

Population

Inclusion criteria required, that participants had practical experience or theoretical expertise in regional hospice and palliative care networks in Germany. Participants are considered to have practical experience, if they are leaders (e.g. member of the steering group) or coordinators of regional hospice and palliative care networks and know the network from an internal perspective. Participants are considered to have theoretical expertise, if they have profound and reflexive knowledge about regional hospice and palliative care networks (e.g. researchers or authors of manuals or other books/brochures on network management, members of national hospice and palliative care associations with longstanding and profound experience with regional hospice and palliative care networks or they were recommended by these associations). All participants must be aged ⩾18 years, have sufficient German language skills to participate in group discussions and consent to participate.

Sampling

A purposive sampling strategy was employed for the recruitment of study participants, based on the following criteria: (1) the sample should include both leaders and other network experts from hospice and palliative care facilities based in Germany; (2) at least 80% of participants should have practical network management experience (e.g. as a coordinator or steering group member) and (3) participants should represent networks that are as heterogeneous as possible, in terms of regional distribution (i.e. from different federal states), district structure (i.e. urban vs rural), network age (i.e. established vs newly founded) and funding status (i.e. funded by public institutions or health insurance providers vs not funded). Regarding the third criterion, participating networks were identified from an inventory associated with an earlier project phase.²¹

Recruitment

Leaders of select networks and network experts were invited to participate in the project via email and were included after they indicated their approval. A survey was conducted to identify participants’ preferred dates for the group discussions. All members of the expert pool were invited to participate in each online group discussions, contingent on their provision of informed consent. Repeated participation was possible, as each group discussion addressed a new topic.

Data collection

Within the research team, a structure and guide for the group discussion was developed. The research team consisted of ED (research associate, female, health economist, M.Sc.), HAAR (research associate, female, psychologist and M.Sc.) and SvS (postdoctoral researcher, male, sociologist amd Ph.D). The group discussions followed an iterative process, whereby the results of the first group discussion informed the conception of subsequent focus groups. In the first focus group, the activity fields and tasks (later called ‘dimensions’) of network management were identified and clustered. In the following group discussions, challenges and good practices in each dimension were collected and discussed.

Between May and August 2023, n = 6 group discussions took place via video conferencing using MS Teams. All group discussions were conducted by researchers with expertise in qualitative interviewing (ED, HAAR and SvS). Additionally, the digital collaboration platform Miro was used to visualise key aspects of the discussion and to structure the process. All group discussions were digitally recorded, and discussions were transcribed verbatim. Miro screenshots were created and saved.

Data analysis

Data were analysed using inductive and deductive coding according to Mayring’s qualitative content analysis, utilising MAXQDA 2022 qualitative data analysis software.²⁵ In the first step, the visualised Miro results were thematically structured by the research team (ED, HAAR and SvS) into different networking dimensions, which formed the framework for the deductive coding of the interviews. In the second step, group discussions transcripts were openly coded by SvS and allocated to the thematic dimensions. In the third step, communicated and visualised challenges in each dimension were identified and separately marked. The process of open coding, thematic allocation and challenge identification was reviewed for consistency by a second researcher (HAAR).

Findings

Participants

Twenty-seven individuals were invited to participate in the study. Of these, 21 agreed and provided their consent and 19 joined. Some did not reply to the invitation, others mentioned lack of time or lack of experience as reasons for non-participation. As repeat participation was requested, a total of 58 participations were registered across the six group discussions (participants with repeated participations: 14, range of participations: 1–6). On average, group discussions lasted 128 min (±18). Sixteen participants (84%) were leaders with practical experience in the field, three were network experts with theoretical knowledge about regional hospice and palliative care networks. The leaders or practical experts represented networks from 8 (out of 16) federal states, different founding years (range: 2009–2023) and varying funding statuses (see Table 1).

Table 1.

Participant characteristics.

Variable	Characteristics	Number (%)
Sex	Male	7 (36.8)
Sex	Female	12 (63.2)
Participant background	Theoretical expertise	3 (15.8)
Participant background	Practical expertise (network leader, coordinator)	16 (84.2)
Network region	Bavaria	3 (18.8)
	Brandenburg	2 (12.5)
	Berlin	1 (6.3)
	Bremen	1 (6.3)
	Hesse	1 (6.3)
	North Rhine-Westphalia	3 (18.8)
	Lower Saxony	3 (18.8)
	Rhineland-Palatinate	1 (6.3)
	Schleswig-Holstein	1 (6.3)
Founding year	Range	2009–2023
Founding year	Mean	2016
Funding status	Funded by statutory health insurance providers, according to SGB V § 39d	8
	Intention to apply for funding	5
	No funding received or planned	3

Themes

Six networking dimensions with 25 sub-themes were identified under the overarching theme ‘networking challenges of regional hospice and palliative care networks’ (see Table 2).

Table 2.

Key networking challenges.

Dimension	Sub-themes
1. Establishment and development	Recruitment of network partners
1. Establishment and development	Collaboration with and distinction from existing network structures
2. Moderation	Active involvement of network partners
	Clarification of roles
	Maintenance of neutrality
	Identification of common aims and topics
	Conflict and competition between network partners
3. Infrastructure	Insufficient funding and financing
	Temporal limitation of funding
	Competing applicants
	Employment of network coordinator
	Insufficient skills of network coordinator
	Insufficient IT structures
	Lack of space
4. Public relations and information exchange	Scope of public relations
4. Public relations and information exchange	Instruments and skills for public relations
5. Education and training	Identification of themes and instructors for training programmes
	Financing of training programmes
	Recruitment of participants
	Initiation of training programmes
6. Development of care services and practices	Agreement on standards
6. Development of care services and practices	Quality assurance and qualification

These challenges are presented in more detail below, accompanied by selected quotes, structured according to the six dimensions.

Establishment and development

The dimension ‘establishment and development’ includes challenges in setting up and embedding the regional hospice and palliative care networks in existing regional structures. In particular, younger networks find it challenging to develop the network and establish a network structure. This includes the identification and recruitment of network partners.

[Recruitment of network partners] should be done regularly and not just once at the beginning, because once you have established your network, you run the risk of the others feeling excluded at some point and perhaps others are no longer really informed that they also have the opportunity to participate in the network. (FG3-E2)

Frequently, new regional hospice and palliative care networks are founded in regions with existing hospice and palliative care network structures (e.g. outpatient palliative home care teams consisting of physicians, nurses and other professionals), and potential network partners may not understand the differences between these structures and regional hospice and palliative care networks, and the benefits of the latter.

There is already a form of cooperation, which is not bad. [. . .] [The foundation of the regional hospice and palliative care network] is a bit like questioning this cooperation. The regional hospice and palliative care network is not so much seen as an opportunity to develop something together, but rather as a technical construct that is now being added on top. (FG1-E7)

Moderation

The dimension ‘moderation’ includes all activities of internal communication and coordination in-between network partners (e.g. network meetings, flow on information and agenda-setting). It represents the foundation of networking activities, and the active involvement of network partners facilitates high network performance and outcomes. However, in practice, such involvement is often lacking.

Sometimes there simply isn’t enough time. It’s difficult to get people involved about something when they’re already under pressure. Often the only response is ‘I’d love to, but I don’t have time’. (FG1-E7)

Network partners may hold different expectations and demands regarding their network involvement, ranging from ‘being informed’ to ‘actively participating’.

Some people just want to be informed in the network, others really want to participate and get involved. I think everyone takes on different roles and that’s fine, but I would definitely address that. (FG5-E18)

Networks are thus challenged to accept the different capacities of network partners, as well as to adapt to the expectations of these partners and customise the network approach to better suit them.

There are different groups. I would say that the network partners who are explicitly involved in hospice and palliative work naturally have a different interest in participating and helping to shape things than those who have another large field of activity. [. . .] I think the trick is to keep them on the ball, so that they don’t lose sight of this topic and, in addition to the many challenges they face, they still accept it. (FG5-E7)

Network partners’ lack of involvement also represents a challenge for coordinators and the common generation of outcomes.

Now I really feel like an animator. I get many looks and when there is a topic and the question comes, who would participate in my working group, and then there is silence for the time being. FG2-E12)

Within regional hospice and palliative care networks, participants may assume a range of roles and functions (e.g. steering group member, coordinator and network participant). When networks are first founded, these roles may not be well defined, resulting in significant uncertainty around tasks and expectations.

In fact, on the one hand you immediately resist this [takeover of the leading role] because you say that this gives you a moderating function. [. . .] You get into the role when you realise that you are taking up topics, addressing groups, naming topics, or possibly naming conflicts. You very quickly find yourself in a very active role and this can quickly become intertwined. (FG3-E3)

In their efforts to build the network and actively approach partners, coordinators often set and implement topics. From the perspective of coordinators, this can be problematic, because they see the identification and prioritisation of topics as a task for network partners.

A further challenge faced by coordinators is their maintenance of a position of neutrality. Network partners are frequently in competitive relationships with respect to patient care, and they may use the network structure to assert their individual interests.

I would also have named neutrality as a major challenge, because conflicts of interest can arise with the various commercial providers. A good hand is always needed and then it is always good to know which hat you have on and then to really put on the neutrality hat firmly. (FG4-E13)

Thus, regional hospice and palliative care networks should attempt to identify common aims and establish consensus between network partners, preferably early on in their operations.

Finally, network coordinators are challenged in their efforts to facilitate the formulation of shared goals among network partners, who may be unsure about their motivations for participating in the network and the benefits they can expect.

I have the feeling that the partners are not quite clear about their goals yet because nobody dares to do it. So we thought about whether we should hold an event or not, and in the end we decided to wait and see. I think that is a shame because I thought that it would have been important. (FG3-E12)

Infrastructure

The dimension infrastructure includes all resources and capacities, which represent the structural basis of the networks. Infrastructural challenges may arise with respect to financing, IT, room availability and the qualifications of network coordinators.

Networks raise funds and collect membership fees and/or donations to finance their work. Statutory health insurance represents their main source of funding, according to § 39d SGB V. However, funding conditions remain challenging.

What happened with us, was that a long-standing network did not receive funding because a mandatory member said, ‘If I can prevent it this way, then I will prevent it at this point’ and an SAPV [specialised outpatient palliative home care] team refused to participate and wanted to promote its own network. (FG3-E15)

Network funding guidelines stipulate that the funding from statutory health insurance is contingent on the involvement of certain service providers and co-financing by the municipality. Thus, lack of service provider cooperation or municipal support may pose a challenge.

We tried to apply for funding last year, but the main reason we failed was that the local authorities simply did not go along with it. This means that nothing comes from the health insurance. (FG2-E11)

Even when funding is achieved, the temporal limitation of the funding period may represent a further challenge for long-term planning and the recruitment of qualified network coordinators.

[Due to the funding conditions] we currently have annual or bi-annual applications for funding, which means that we can only offer annual contracts to our coordinators. (FG1-E9)

Moreover, large rooms are required for network meetings at which all network partners will attend. As there is often a lack of funds to rent appropriate rooms, networks may rely on network partners to make these rooms available.

[Another challenge] is to have or find a room that is big enough for all network members to fit in. (FG3-E1)

Digital applications and extended IT equipment are often needed to coordinate networks, but are not always available.

As far as the IT infrastructure or programs are concerned, we are simply realising that we are reaching our limits with the simple Excel program. We are currently looking for something that allows us to query contacts and data in a more targeted way. (FG4-E8)

Finally, coordinators require a wide range of skills to network successfully, including communication skills, moderation skills, knowledge of palliative care structures, digital competences, organisation/administration skills and public relations skills. A lack of these skills may pose a challenge to network functioning.

When you set up the networks, you have to do a lot of persuading, so you also need a winning personality [. . .] and to demonstrate advantages. (FG4-E14)

Public relations and information exchange

Public relations aims at informing citizens and health care providers about network activities and offers. Networks use different channels for this work (e.g. websites, leaflets, press releases and social media), and they often find it challenging to maintain functionality and productivity across these channels.

We had such a patchwork of a very bad homepage, which somehow does not function anymore. (FG4-E7)

Given the heterogeneous nature of the target groups for public relations activities, networks often adapt their public relations strategies to suit individual target groups. This requires specific media skills on the part of coordinators.

Who and how can we use which medium so that we can reach all the target groups that we have? They are sometimes very complex and then we have to use the target groups’ media, how do you say, communication channels, yes, media and that is, that can be a challenge. (FG4-E2)

Thus, coordinators who are lacking in sufficient public relations skills may limit the success of their networks.

It would be great, if we could clearly say that certain competences or experiences are necessary. If someone does not have that at all, then that is a huge challenge. It might not even be in the person’s interest, if they don’t have this experience. This should be clearly communicated from the outset. (FG3-E2)

Education and training

The dimension ‘education and training’ represents all activities of networks to initiate and organise further education programmes and train employees in hospice and palliative care, thereby enhancing care delivery. However, they may face challenges relating to the organisation and financing of seminars, the identification of relevant topics and trainers and the recruitment of participants.

Networks strive to offer training programmes that are accessible and open. However, to do so successfully, they require significant financial resources.

If I organise that [further and advanced training], it exceeds the personnel volume that is granted in the funding application. [. . .] I do not think we could manage that. (FG2-E6)

Some networks outsource the organisation of training programmes to professional service providers. However, the identification of topics and trainers may remain a challenge, especially for coordinators who are not well-versed in current discourse in the field.

Let us coordinate the training programs a bit, also coordinate the content, so that the whole thing is not dependent on regional sensitivities. (FG5-E17)

Accommodating the different levels of knowledge among potential training participants represents a further challenge, as coordinators must balance the needs of beginners with those of experienced and advanced participants.

Our problem was that we do not know what level of knowledge the individual network partners have when they join this network and finding a common starting point that it is not too challenging for some and not too boring for others. That is one of the most difficult things. (FG5-E17)

After a training programme is organised, the recruitment of participants from network partners remains a significant challenge. Network training programmes are often voluntarily, requiring participants to attend during working hours or in their leisure time.

It is a challenge, that network members need to be motivated to take part in training courses because everyone here somehow always has little time and is very busy. One suggested solution could be to offer training courses free of charge or to grant discounts if several employees from one organisation take part. (FG5-E12)

Development of care services and practices

This dimension includes all activities of regional hospice and palliative care networks, that aim to improve regional care services, for example, by developing joint case and hospital discharge management or implementing unified emergency management documents. However, these initiatives often require implementation by all network partners, requiring high levels of commitment.

I try to develop a new common documentation paper for the transfer of patients, because the difficulty is that there are so many different papers. In the area of transition for example, we realise that what these different systems provide is not sufficient. (FG5-E7)

Even when coordinators and network members recognise the benefits of establishing common standards, implementation can still be problematic.

I think it is a quality criterion to set common attitudes and standards, including through further trainings. That would be important, but unfortunately, it’s not always feasible in practice. (FG5-E3)

Changing standards often involves considerable conversion effort from network partners, who may be incapable of (or unwilling to) undertake this work.

Discussion

Main findings

The present study provides insight into the challenges faced by regional hospice and palliative care networks in Germany from the perspectives of network leaders and experts. Numerous challenges exist at the levels of network establishment, development, infrastructure and moderation. These challenges appear particularly prevalent in the early phases of organisational development, perhaps reflecting the fact that regional hospice and palliative care networks are a relatively recent phenomenon. In Germany, most regional hospice and palliative care networks are still in the establishment phase, with plans for further structural implementation underway.²¹ This study found that successful networking depends significantly on effective network governance, which is a complex and demanding task that requires 1) sustainable network infrastructure, 2) qualified network coordinators and the 3) active involvement of network members.

Interpretation of results

Need for sustainable network infrastructure

International research on regional hospice and palliative care networks impacts has shown that certain structures (defined by, e.g. professional coordinators, steering committees and/or cooperation contracts) facilitate collaboration among health care professionals at a meso level.⁹ The present findings further specify that the design of these structural conditions is crucial. In Germany, funding for regional hospice and palliative care networks must be applied for annually, and it depends on further financial support from local municipalities and the involvement of a diverse range of health care providers.²⁶ Although this new funding structure has positively impacted the number of regional hospice and palliative care networks,²¹ the financial situation of many regional hospice and palliative care networks is precarious and the recruitment of qualified coordinators and the establishment of sustainable infrastructure remain significant challenges. International research has shown that regional hospice and palliative care networks are remarkably adaptable to local context and funding conditions, but effective coordination and centralised capacities are identified as a success factor of network management.⁹ Thus, the present results indicate that sustainable structures and financial support may facilitate an effective coordination by a network coordinator.

Skills and attitudes of network coordinators

The challenge of finding qualified network coordinators is particularly acute, as empirical data show that network governance is highly associated with network performance outcomes.^27,28 The governance of health care networks is a difficult task that requires special skills and competences. Regional hospice and palliative care networks must recruit new members, motivate active participation and support participant exchange without formal authority or competence.^29,30 Especially in their early years, networks may face diverse expectations and aims among members, which can challenge network coordinators and leaders. Conflicts between network members can further complicate network moderation. In this context, coordinators must maintain neutrality, consider all members’ interests equally and manage tensions within the network.³¹ Therefore, it is advisable that networks select coordinators who enjoy high trust among members and are as independent as possible (e.g. not employed by a network member).

Involvement of network members

The present results suggest that success of regional hospice and palliative care networks depends not only on the internal network structure, but also the resources and willingness of participants to collaborate. Network coordinators find it challenging to facilitate the active involvement of network members, with respect to establishing common themes and engaging in network activities. A potential reason for this is that network members are often overburdened with patient care tasks. A second challenge faced by network coordinators is networking, which requires additional resources and independent planning. Thus, the generally high workload in the health care sector seems to pose a crucial barrier to success of regional hospice and palliative care networks. Research on hospice and palliative care networks in different countries (e.g. Australia,^4,13 Canada,^11,17 and Netherlands^2,7 also indicate, that networking may generate various professional practice benefits for members.⁹ Emphasising these benefits in public relations could motivate network members for further involvement in networking.

At a structural level, regional hospice and palliative care networks may expand the range of care services and harmonise regional care standards (with respect to, e.g. discharge management or the documentation of advance directives).^11,13 While these benefits are widely recognised, the tasks involved demand high levels of commitment from network members. Once an organisational standard is established, members’ willingness to change is often limited. Therefore, effective network coordination may depend on the introduction of new care instruments at an early stage to facilitate agreement.

Strengths and limitations

Study participants represented regional hospice and palliative care networks at varying levels of maturity (ranging from nascent to well-established). This diversity allowed for a comprehensive overview of the challenges faced by different networks, indicating a main strength of the study. The focus of the study was to identify the multitude of challenges of regional hospice and palliative care networks. A detailed analysis of the individual challenges was not the aim of the study and is not included here. This study focusses on the challenges perceived by network coordinators, leaders and theoretical experts. Experiences of patients and relatives and other network members are not assessed in this study.

Research on health care networks has shown that their functioning, outcomes and overall success depend on the specific characteristics of national health care systems.⁹ A limitation of our study is that the data reflect the challenges faced by regional hospice and palliative care networks within the German health care system, which includes specific funding structures (e.g. annual funding applications, local municipality support, mandated involvement of a certain number of health care providers). However, the fundamental structures and dynamics of German regional hospice and palliative care networks (with respect to, e.g. project funding, competition among service providers, resource scarcity) exist in many countries, making some of the findings internationally applicable.

Conclusion

The present results highlight the various challenges faced by regional hospice and palliative care networks in Germany across different networking dimensions. The findings demonstrate a clear need for sustainable structural conditions, as well as the development of specific skills and attitudes among network coordinators. The success of regional hospice and palliative care networks appears to depend significantly on the involvement of network members, who often lack sufficient resources. Further reflection on these network challenges will be essential for developing realistic expectations regarding the performance and significance of regional hospice and palliative care networks and preventing their overburden.

Footnotes

Acknowledgements

We thank all interview partners for their participation in the study. We also acknowledge Valerie Appleby for her excellent editorial scrutiny of the language in the present article.

Author contributions

SvS, FH and NSch were responsible for the study concept and design. SvS, HAAR and ED collected the focus group data. SvS and HAAR analysed and interpreted the focus group data. NSch and FH supervised the research process. SvS drafted the manuscript. All authors critically revised the manuscript and approved the final version.

Data management and sharing

The datasets used and/or analysed during the current study are available from the corresponding author upon reasonable request. All relevant data from this study will be made available upon study completion.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study ‘HOPAN – Status Exploration and Analysis of Regional Hospice and Palliative Care Networks Using an Adapted Quality Assessment Tool’ is funded (on the basis of peer review) by the Innovation Fund of the German Federal Joint Committee (G-BA; Grant N° 01VSF22042). The grant was awarded to SvS. The funders had no role in the study design, data collection and analysis, decision to publish or preparation of the manuscript.

Ethics approval and consent to participate

Ethical approval was granted by the Ethics Committee of Hannover Medical School (No. 10424_BO_S_2022 20.07.2022) at 20. July 2022. The research team regularly informed participants about the study and data management procedures. Written consent was obtained from all participants.

Trial registration

The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien; Registration N° DRKS00030629; date of registration: 02 November 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

ORCID iDs

Sven Schwabe

Hanna AA Röwer

Franziska A Herbst

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Challenges of regional hospice and palliative care networks: A group discussion study with coordinators and network experts

Abstract

Background:

Aim:

Design:

Setting/participants:

Results:

Conclusions:

Keywords

Introduction

Methods

Design

Ethics

Setting

Population

Sampling

Recruitment

Data collection

Data analysis

Findings

Participants

Themes

Establishment and development

Moderation

Infrastructure

Public relations and information exchange

Education and training

Development of care services and practices

Discussion

Main findings

Interpretation of results

Need for sustainable network infrastructure

Skills and attitudes of network coordinators

Involvement of network members

Strengths and limitations

Conclusion

Footnotes

Acknowledgements

Author contributions

Data management and sharing

Declaration of conflicting interests

Funding

Ethics approval and consent to participate

Trial registration

ORCID iDs

References