Setting

This study was conducted in Flanders, Belgium. Palliative care in Belgium is a holistic approach aimed at improving the quality of life for patients with serious, life-limiting illnesses. It focuses on relieving symptoms, managing pain, and addressing emotional, social, and spiritual needs, while providing support to families and caregivers. This care is provided alongside curative treatment and is tailored to the individual’s needs and preferences. Eligibility for palliative care generally involves having a terminal illness with a prognosis of limited time and a need for intensive symptom management.

Palliative care is a right enacted by law (“Wet betreffende Palliatieve Zorg” - June 14th 2002). This law guarantees that all patients, regardless of their location in the country, have access to appropriate end-of-life care.

The care is provided in various settings. Many patients receive palliative care at home, supported by their general practitioner, home care nurses, and specialized palliative care teams, a preferred approach due to the comfort and familiarity of the home environment. The care providers are trained to offer basic palliative services and coordinate with specialized teams when needed. Specialized palliative care teams, composed of physicians, nurses, psychologists, social workers, and other trained professionals, support primary care providers and manage more complex cases. These teams operate in various settings, including hospitals, community care, and residential care facilities. Hospitals also provide palliative care through inpatient units or consultation teams for patients with complex symptoms or those requiring intensive care. Residential care facilities, such as nursing homes, offer palliative care (with the support of specialized teams). Additionally, palliative day centers provide daytime care and support for patients, offering respite for caregivers while allowing patients to remain in their home environment. Hospitals can also have a palliative care unit. However, in some regions, particularly where resources are limited, palliative care may not be as uniformly regulated or may be delivered informally, which can lead to variations in care quality and availability.

Belgium is divided into several palliative care networks, typically one per province, which are responsible for coordinating and ensuring the continuity of care across different services and regions. These networks not only organize and deliver palliative care services but also provide training to healthcare professionals and promote awareness of palliative care. Above that, the Federation of Palliative Care acts as an overarching entity that unites various associations, healthcare professionals, and stakeholders within the field. Its primary mission is to harmonize efforts, disseminate knowledge, and advocate for the provision of high-quality palliative care throughout the healthcare system. By integrating these diverse groups, the Federation amplifies the collective influence of the palliative care community, thereby ensuring that the needs of patients and their families are addressed with compassion and professionalism.

Following the Rainbow Model for integrated care of Valentijn et al. (2013, 2015) [12, 13] clinical care at the micro level is organized in a horizontal manner in the palliative care setting care. The care package offered, which includes multiple services and disciplines, is optimally organized and integrated to meet the real needs of the patients. For the meso level we distinguish among organizational and professional integration. The integration of organizations refers to the extent to which services are produced and delivered in a linked way in order to combine skills and knowledge of different organizations. Professional integration refers to partnerships among professionals. At macrolevel, integration comprise a tailored combination of structures, processes and techniques to meet the needs of individuals and populations. Specifically, this concerns aligning regulatory frameworks and the political, social and economic environment [12, 13].

Design

This study applies a multimethod design using the analytic hierarchy process (AHP) method from Saaty [18,19,20]. The AHP allows us to determine and prioritize objectives and criteria at different hierarchical levels [21]. It addresses decision-making problems in complex situations where uncertainty exists, multiple decision makers are involved, and multiple considerations—both subjective and objective—are important [21]. As the AHP allows for the active participation of stakeholders and provides managers with a rational basis for making decisions [22], the method is applied in a wide variety of situations, for example, in government [23], business [24], industry [25], education [26] and healthcare [27]. The AHP was chosen because of the possibility to set priorities for a future framework in a more objective way and thus transcend subjective discussions. To reveal these priorities, the AHP Process passes through multiple sequential steps using different methods (see Table 1).

AHP processStep 1: Structure the problem into a hierarchy

The hierarchical structure should be a complete representation of the priorities with all applicable criteria and subcriteria. At the top of the hierarchy is the goal—or that which is sought to be achieved—in this study the goal is: integrated palliative care. At the second level are the criteria that are important for achieving the goal. In this research, we base this on three levels of integration (cf. Rainbowmodel Valentijn et al., 2013, 2015) ) [12, 13], namely, the macro (system), meso (organization and professional) and micro (clinical) levels. In addition, the distinction is made between functional enablers (i.e., regulative) and normative enablers, in other words, hard preconditions (such as data management, funding and information systems), and soft preconditions (such as a shared vision, shared norms and values). In our case, the subcriteria for functional and normative enablers are the priorities put forward by the stakeholders to achieve integrated palliative care at each level.

Firstly, a comprehensive literature review was conducted to gather all relevant international information on integrated (palliative) care. We systematically searched the Web of Science, Google Scholar, PubMed, and Embase databases using a combination of keywords related to integrated care, palliative care, and organizational recommendations (see also Appendix 1) to map relevant international information regarding integrated palliative care and recommendations for future organization of this care. This search was not restricted by publication date, ensuring the inclusion of both foundational and recent studies. The identified articles were screened for relevance, and the key findings were systematically tabulated in Excel. This process allowed us to synthesize the literature, identify key themes, and selected a well-established framework to guide our research. The findings also formed the basis of our interview guide, ensuring that it was aligned with the best practices and recommendations found in the literature.

Secondly, based on the results of the literature search, 12 semi structured interviews were conducted with stakeholders. Stakeholders were defined based on their roles and experience within the (palliative) care continuum. At the micro level, stakeholders were identified as individuals with direct, hands-on experience in providing patient care, such as frontline healthcare professionals (e.g., nurses, physicians, social workers) who interact directly with patients and their families. Patients and family members were not included as stakeholders in this part of the study because their perspectives were considered less comprehensive regarding the organizational aspects of palliative care compared to other stakeholder groups. At the meso level, stakeholders were those involved in the management, coordination, or organization of care services, including roles such as department heads, care coordinators, or administrators who oversee care delivery across populations or within healthcare organizations. The participants were purposively sampled based on their expertise in the sector and contacted via email. These inclusion criteria ensured that our interviewees had relevant and practical insights into both the delivery and organization of palliative care. The interviews took place during the months of June, July and August 2020 and were conducted via Microsoft Teams due to COVID-19 measures. The interviewer, who holds an MSc in Health Care Management and Policy, has substantial experience in qualitative research and a background in nursing, ensuring a strong affiliation with the sector. On average, an interview lasted 60 min. The interviews aimed to validate and complete the literature search (see Appendix 2 for the interview guide). Specifically, criteria per level were further inquired about, and the content was formed for the subsequent focus groups.

For the deductive analysis, we relied on the interview transcripts combined with the notes taken during the interviews. All interviews were recorded via Microsoft Teams or I-talk, transcribed, and analyzed using NVivo by the interviewer and a second researcher (Phd), who is employed as psychologist in the palliative care sector. Transcriptions were checked for criteria that already emerged in the literature search and to add new relevant criteria extracted from the interviews.

The proposed codes and resulting hierarchical tree structure —based upon the framework of Valentijn et al. (2013,2015) [12, 13]— were regularly discussed by the steering committee. The committee comprised three healthcare professionals from palliative care: a geriatrician specializing in palliative care, a professor who is also a practicing general practitioner in primary care, and a psychologist with expertise in palliative care. All three of them also have affiliations with umbrella organizations advocating for the interests of the patient and scientific research groups. Additionally, three scholars from the fields of organizational science and healthcare operations management participated, two of whom also hold a degree in nursing.The purpose of these meetings was to critically review the obtained interview codes and juxtapose them with the recommendations or criteria from the literature search. The criteria in the steering committee discussion were (1) correctness of the codes, (2) clarity or intelligibility of the codes, and (3) whether the interview codes were redundant with the information found in the literature.

Step 2: Validation of and selection of criteria and subcriteria

For this step, six focus groups were organized. Recruitment was conducted via mailing through palliative care networks, professional associations, patient organizations (targeting both patients and caregivers), and hospitals. The focus groups were designed to include representatives from all relevant stakeholders—such as patients, family members, informal caregivers, professional caregivers, volunteers, and care managers—across the different levels of care. Each focus group involved a diverse mix of stakeholders to ensure that multiple perspectives were represented. Two focus groups were conducted for each level of care—macro (system level), meso (organizational and professional level), and micro (individual level)—to address the complexity and diversity of the criteria at these levels. Additionally, the discussions at each level covered both functional and normative enablers, further highlighting the need for comprehensive integration [12, 13]. By organizing the focus groups this way, we ensure that the specific needs and perspectives of each group are thoroughly explored and adequately represented in our findings. We built on the criteria obtained from the literature search and interviews during these focus groups. The purpose of these focus groups was to arrive at clear and unambiguous criteria. Following a brief introduction to the project and the current research phase, the forms and levels of integration were described. The focus group then concentrated on a specific level of integration, where both functional and normative enablers were presented for evaluation. The central questions in the focus groups were as follows: “What do you understand by the criteria?” (cf. criteria clarity), “Did we forget any criteria?” (cf. criteria completeness), and “What are the most important criteria for this particular level?” After the analysis of these six focus groups, an additional round of focus groups was scheduled for the meso and micro levels as advised by the steering committee. These two focus groups questioned the criteria that were reformulated as a result of the first round.

As part of the security measures due to COVID-19, all the focus groups took place online via Microsoft Teams. The duration of the focus group averaged 2 h. At least two members of the research team were present at each focus group. The researchers alternated in terms of presentation, observation and notation. All four involved researchers have affiliation with the healthcare sector and are familiar with conducting qualitative research.

The content of the focus groups was based on the composition of the hierarchical tree structure. For the analysis, the four researchers involved in the project relied on the recordings combined with the notes taken during the focus groups. We generated a document containing a table with the findings and examples provided by the participants, level-by-level for each criterion. Thus, we provided an overview of the criteria intelligibility, clarity and completeness.

The final hierarchical structure was limited to a maximum of 6 criteria per level taking into account the prioritization in the focus groups with the use of mentimeter, which was followed by consultation of the steering committee. The higher the number of criteria, the more pairwise comparisons are needed (see step 3). With 6 criteria, 15 pairwise comparisons are to be made. This ensures that the subsequent questionnaire is not too long and thus increases the response rate.

Step 3: Combine the pairwise comparisons to derive weights for hierarchical elements

In this final step all elements are compared in pairs regarding their importance for the organization of integrated palliative care through an online questionnaire. Participants were asked to start by comparing elements across different hierarchical levels: macro-meso, meso-micro, and macro-micro. Next, they contrasted the meso-organizational level with the meso-professional level. Following this, they evaluated the balance between functional and normative enablers within each level. Finally, participants compared the subcriteria within each level to determine their relative importance in achieving integrated palliative care. A nine-point scale was created for this purpose (see Fig. 1) with the following statement: “We would like to ask you to indicate in each case to what extent 1 of the 2 aspects is more important for achieving integrated palliative care.”)

Each set of comparisons is subsequently entered into a comparison matrix using the software program Super Decisions [21].

Fig. 1

Double sided nine-point scale. Legend: The numbers represent the following degree of importance: 1 = The two criteria that are opposite each other are equally important; 3 = One criteria is slightly exceeds the other criteria; 5 = One criteria is more important than the other criteria; 7 = One criteria is more important than the other criteria to a great extent; 9 = One criteria is more important than the other criteria to a very strong degree

Table 1 Different phases of the study

A digital questionnaire in REDCapⓇ [28] (an electronic data capture tool hosted at Ghent University Hospital) was created and completed by 305 different stakeholders. These included people with professional experience at the different levels (e.g., health care providers, regional policy staff, research staff, etc.) and people with personal experience at the micro level (e.g., incurable patients and their relatives, informal caregivers, etc.) in palliative care. Additionally, related organizations (such as hospitals, home care and education) were involved.

Recruitment was conducted using two methods. The first method involved utilizing REDCap. Through REDCap, emails were sent out containing an invitation to participate in the survey along with a direct link to the questionnaire hosted on the REDCap platform. Email addresses were collected through extensive online research targeting institutions and individuals involved in palliative care, cancer patient care, chronic care, and related fields. The second method involved reaching out to organizations. Various organizations were contacted via email or phone and asked to distribute our flyer (which included a link to the questionnaire and a QR code for easy access) to relevant stakeholders. The flyer was distributed exclusively in digital format. Due to COVID-19 restrictions, no physical flyers were permitted in public places or waiting rooms during this phase of the study.

The questionnaire started by collecting demographic data from the respondents. A distinction was made between people with professional experience in palliative care (group A) and people with only personal experience in palliative care, i.e., as patient or as relative or informal caregiver (group B). Group B only made pairwise comparisons at the micro level, as the macro and meso levels require some insight into the organization of palliative care. Next participants had to prioritize the different criteria.

Using the software program Super Decisions, the results of the pairwise equations are converted into relative weights for the decision elements [21]. These weights are more than a ranking. It is a ratio scale that we can use to divide among the different criteria. In this way, we can calculate how important a particular criterion is than another criterion. Based on the pairwise comparisons and the determined geometric mean values of the respondents, the program generates weights for the different criteria and consequently prioritizes them. We refer to Saaty’s work around the method for more detailed information [18,19,20]. Because people are often unpredictable in their judgments, the AHP method assumes that each comparison matrix contains inconsistencies. A check for judgement consistency is a routine part of the AHP weighting method [21]. Here, the principle of a consistent answer applies if A > B and B > C; then, it is logical that A > C.

Ethical considerations

This study was approved by the ethics committee of Ghent University Hospital (project BC-07391). All participants were informed orally and in writing via informed consent. Data were pseudonymized throughout the research process to ensure confidentiality. The (Dutch) data and questionnaire are available upon reasonable request with the corresponding author.