Using a Co-Construction Participatory Modeling Approach to Understand the Complexity in Collaboratively Managing Knowledge for Multi-Morbid Chronic Disease Patients on Advance Care Plan

doi:10.21203/rs.3.rs-2570250/v1

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Using a Co-Construction Participatory Modeling Approach to Understand the Complexity in Collaboratively Managing Knowledge for Multi-Morbid Chronic Disease Patients on Advance Care Plan

https://doi.org/10.21203/rs.3.rs-2570250/v1

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Across the globe, the healthcare sector is experiencing transformations (cultural, social, digital and economic). This is due to the age and varying patient needs that are driving a shift in the healthcare landscape. At the same time, chronic diseases, social determinants and resource limitations continue to add pressure. Healthcare has thus shifted from paternalistic mode of care to patient centered care (PCC). The growing multiple divergent medical cases denote a need to collaboratively understand clinical issues and effectively determine the best course of action. With PCC, a patient is recognized as a unique human being before forming a diagnosis. This implies that there is a need for multifaceted decision-making. In this study, we use a co-construction participatory modeling approach to understand the complexities in collaboratively managing knowledge for multi-morbid chronic patients on Advance Care Plan (ACP). To achieve this, focus group discussions (FGD) with 12 participants (five healthcare professionals, three health managers and three healthcare key decision makers) from Basque Public Health System (Osakidetza), in Spain were involved in identifying the key challenges and developing a systemic thinking model. As a result, three key challenges were identified i.e. 1) culture (citizens are not willing to talk about death, 2) healthcare professionals’ challenge to change attitude and perspectives, and 3) changing the current system towards holistic and a shared care model. From the developed Causal loop diagrams (CLDs), it is noted that perpetuation of fragmented and paternalistic care is likely to get worse without recognition of the ACP as a social need and a crucial part of the clinical practice part change.

Co-Construction Participatory Modeling

System thinking

Collaborative Knowledge Management and Advance Care Plan

Comorbidity and multi-morbid chronic disease patients are faced with multiple health challenges e.g. complex pharmacological interventions and clinical management, high healthcare costs [1, 2], worse health outcomes [3] etc. They are also faced with difficulties in dealing with multiple care service providers and making decisions on e.g. healthcare preferences, curative or palliative treatment, end of life etc. yet, their ability to adapt, cope and self-manage is important [4]. One of the implemented measures to address such challenges is a care plan (CP). A care plan is a consultative process that supports patients’ decision making about the future of their healthcare up to end of life [5, 6]. Through this process, patients are informed and empowered by allowing them to individually share documents, make comments and engage in the decision making process.

In the disease course of a complex multi-morbid chronic patient on a care plan, several assessments are made. These require multiple collaborations with knowledge experts that have different profiles (e.g. healthcare professionals, laboratory technicians, clinicians, patients and relatives, etc.) and can work together towards the patients’ care and treatment. The need for professionalized knowledge experts to collaborate while treating a common patient has led to the implementation of a Shared Care Plan (SCP). SCP’s concern is the development of the effects of a chronic and incapacitating illness (an illness that is characterized by inevitable progression and an unfortunate prognosis). The SCP is updated in line with the disease progression [7]. During the assessment and implementation of a patient on SCP, a lot of information (knowledge) about the patient's disease, treatment, care, etc. is obtained. For example, a patient in such a condition goes through a number of assessments, for each assessment, the patient’s information is revised and incorporated with fresh ideas that are then inserted into an established knowledge structure to create new insights and obtain knowledge. Management of these interactions is complex and as the patient’s information accumulates, information technologies are needed to support the management of this information. Thus, patients’ utilization of a SCP, and the diversity and contradicting needs associated with multi-morbid patients create new learnings [4, 8, 9, 10, 11]. Also, collaborative engagements, lead to the creation of new knowledge [12]. This new knowledge allows to better understand the patient’s medical condition, build insightful alternatives and make informed decisions on the way forward (diagnosis, treatment, care plan etc.). Capturing and sharing these learnings from patient illness progressions through integrated healthcare activities is a critical enabler to supporting a connected approach to healthcare design and delivery. For best results, a range of stakeholders needs to work/collaborate on shared goals in a unified and integrated manner [13].

Collaboration as defined in [14–16] is a process through which multiple stakeholders with varying individual expertise view different aspects of a shared problem and constructively explore their differences to search for common solutions. In [15] and [17], various contexts and definitions of collaboration are provided. In these definitions, the creation/building of knowledge assets through personal interactions with collaborative information technology (IT) systems is emphasized, which leads to deriving collaborative knowledge. The term collaboration and cooperation are sometimes interchangeably used. But, cooperation involves pre-established interests whereas collaboration is process based with collectively defined goals. Here, we use collaboration in the context of a group of people with differing perceptions and aspects of a problem actively working together to achieve specific goals. This group of people collectively define goals, share responsibilities, have shared authority and are accountable to the results [16, 18]. Effective collaboration requires a high level of cognitive participants’ involvement, as well as a preparedness for them to contribute to the creation of a shared understanding [17].

In [19] it is argued that medical decisions are more than a cognitive process. That is why they require engaging with multiple stakeholder (e.g. patients, caregivers and healthcare professionals; doctors, nurses, pharmacists, laboratory technicians). Building relationships through interaction with clinicians, patients and IT support helps 1) build a higher-order thinking and inquiry into the problem, 2) brings about varying solutions, and 3) leads to a deeper understanding and creation of insights/knowledge [19–22]. Collaboration in clinical decision making (CCDM) are process driven measures with mutual participation and cooperation among multiple stakeholders (health professionals, clinicians, patients, and family members) with support of information communication technologies [23, 19]. CCDM is contextual, continuous with an evolving process. It includes examining, synthesizing, interpreting and evaluating information/data to produce evidence-based choices of action in a clinical set-up [19]. Successful CCDM depends on varying factors among which is a) healthcare professionals’ clinical “mindlines” b) existing knowledge structures, c) disease pattern recognition, d) inherited culture e) role perception etc. [24–26]. Although CCDM allows patients to collaboratively participate in their medical decision making process, there is need to better understand the complexities in collaboratively managing knowledge for multi-morbid chronic disease patients.

1.1. Brief background

When patients on a CP advance in age their health condition deteriorates and illnesses become more severe, an advance care plan (ACP) is implemented. ACP is a process “where a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care, should he or she become incapable of participating in medical treatment decisions” [27]. ACP highlights the main challenges of shared care planning, the need to create new knowledge and collaboration in clinical decision making. The involvement of various stakeholders and the complexity in ACP demonstrate an extreme need for collaborative knowledge management. Implementation of ACP faces a number of transformational and organizational challenges [5, 28–35]. These challenges are interdependent and coexist with solutions. A study of ACP can help to understand how the actors involved in the care may interact and affect the creation and implementation high quality personalized integrated healthcare for multi-morbid chronic disease patients.

In this study, we used the Basque health system as a case study. The Basque Country is one of the 17 autonomous regions with approximately 2.18 million inhabitants located in the north of Spain. It is a representative scenario of OECD countries that are rapidly ageing, and with death rates related to frailty correspondingly growing. Among the population, only 1.47% had their advance directives registered, as a proxy of ACP engagement, although 22% of the Basque population are over 65 years old today, with a high prevalence of chronic diseases and an increase in people’s frailty and dependency. Each autonomous region in Spain has its own public health system, ruled by same state laws but different regional norms [36]. The population from OECD countries is aging and ACP awareness has risen on the people-centered health policies. In a majority of countries, deaths within hospitals decreased between 2009 and 2019 which possibly emphasizes the initial efforts to meet and align with people’s preferences. There is still a long way to go to face the incipient demand as the number of people dying of diseases that would benefit from ACP is forecasted to increase from 6.3 million in 2017 to 9.7 million in 2050.

This study therefore aims to understand the contributing factors and complexity in collaboratively managing knowledge for multi-morbid chronic disease patients on ACP, within personalized integrated care. The paper proceeds as follows: In section 2, we present materials and methods. In Section 3, we present the results indicating the model development process. In Section 4, we discuss the resulting causal-loop diagram (CLD). In section 5, we draw conclusions.

The complex nature of the challenges of ACP implementation requires a social systems approach to support understanding of the cause and effect or their interrelatedness. To achieve the aim of this paper, we use a co-construction participatory modeling approach. The social systems approach used in this study is system thinking. Systems thinking supports understanding of the cause and effect relationships between or among variables and analysis of the dynamic interactions between variables overtime [37]. The system thinking approach uses causal-loop diagrams (CLDs) to capture structures and interactions of feedback loops; to model the causality, and to brainstorm on a given problem [38–39]. The casual relationship in CLD indicate one element affecting another element. Representing the feedback of related elements requires including a positive (+) and negative (-) polarity to the CLD diagram. A relationship is positive if the condition in which a casual element, (A), results in a positive influence on a casual element on (B) (A🡪⁺B) i.e. an increase of ‘A’ value responds to the ‘B’ value with a positive increase. A relationship is negative if the condition in which a causal element, (A), results in a negative influence on (B) (A🡪⁻B) i.e. an increase of ‘A’ value responds to the ‘B’ value with a decrease’ [40]. A closed sequence of causes and effects (closed path of action and information) lead to a feedback loop (reinforcing (R) and balancing (B). For more explanation, see appendix A and refs. [41, 42].

2.1. Stakeholder involvement in model development

There are various definitions of who a stakeholder is [43–45]. In this study, we opt to use the definition in [43] which states that a stakeholder is “... a group of people influenced by and with the ability to significantly impact (either directly or indirectly) to the topic of interest”). To put this study into context, we used the Basque health system as a case study. Integrated care in the Basque region is structured in thirteen (13) different organizations; including both primary care and hospital services. Each of these Integrated Care Organizations cover a population of 150,000 to 400,000 inhabitants. Out of the thirteen integrated care organizations, we selected participants from four (4) healthcare organization to take part in this study.

2.1.1. Stakeholder identification and categorization

Stakeholder identification is an iterative process that requires clear understanding of the problem [46]. Here, a team of eight (8) persons were involved in the study. Each of the persons on the team had a clear understanding of the study. A meeting was held chaired by the key researcher and all persons were present. As a result of this meeting, the following were obtained: 1) two persons were tasked to identify and contact participants that were to take part in the focus group discussion (FGD), 2) a proposed list of participants, and 3) categorized/grouped participants based on their roles and attributes i.e. knowledge/ expertise of the research area and availability. This was done to avoid ad hoc stakeholder identification. This identification process used is in line with [44, 46]) who in their articles provide procedural steps for stakeholder analysis.

We agreed that in the first two sessions participants are to be divided into two groups (group A and group B). Group (A) comprising of healthcare professionals and group (B) comprising of decision makers and healthcare managers. Although both groups are involved in successfully implementing and managing ACP, their responsibilities differ. Healthcare professionals are more in implementation/ realization while healthcare managers and decision makers’ interests are in operationalization of ACP. The identified stakeholders were therefore selected because they had differing experiences and views on the topic of discussion. The selected participants were contacted through email and phone calls. Due to their busy schedule, not all participants agreed to take part in the study. Those that accepted were requested to suggest their available dates. Based on their feedback, a final date was selected. On fixing the date, an agenda and working documents were emailed to all participants. This stakeholder analysis process of selecting and categorizing stakeholders on the basis of expertise is supported by [47]. The aim of this phase was to evaluate and understand stakeholders' relevance to the study [44, 47].

2.1.2. Conducting the focus groups

A focus group as defined by [48] is a moderated discussion among six to twelve persons discussing a topic under the direction of a moderator whose role is to promote interaction and keep the discussion on the topic of interest. For this study, three FGDs were conducted. The aim of conducting these FGDs was to 1) obtain data from a synergized group interaction on challenging factors in collaboratively managing knowledge for multi-morbid chronic disease patients on ACP within personalized integrated care, 2) allow researchers have a deeper understanding of the complexities involved, and 3) build a CLD model for the identified challenges through active collaboration and rigorous integration of different expertise and interdisciplinary skills. To support proper management of the FGDs, an activity plan presented in Table 1 was developed.

Table 1

Focus Group Activity plan
Planned session activities (1 h 40 min.)
No.	Activity	Duration
1	- Explain the dynamics of the two sessions (activities and objective of the focus group session, assignment of the person who will present the work in the next session). - Ask permission to record the session	10 minutes
2	- Answer participants' questions and doubts	10 minutes
3	- Participants write the challenges on yellow post-it notes (sticky notes).	10 minutes
4	- The moderator collects the post-it notes and fixes them on the laminated wall/board. - Participants are asked to discuss and prioritize the: 1) challenges, 2) identify causes and 3) consequences.	60 minutes
5	- Take photos of the models obtained from each group
Activity plan for the second session (65 minutes)
No.	Activity	Duration
1	- Present a summary of the models obtained in the first parallel session	10 minutes
2	- Prioritize the challenges (focus on three key challenges); specify causes and consequences	30 minutes
3	- Link causal links (directional arrows) with marker pen.	20 minutes
4	- Take a photo of the models and the work done, thank the participants for their attendance and conclude the session. Ask them if we can send them a questionnaire by email and discuss the extent of this research with patient collaboration.	5 minutes

Prior to the FGD, three preparation meetings were held at Kronikgune Institute for Health Services Research. The aim of these meetings was to deliberate and agree on a number of activities to guide the execution of the FGD. During these meetings, several items were discussed among which were 1) the focus discussion agenda and dates 2) moderator roles, 3) focus group session setting and 4) the required working materials.

Three FGDs were conducted. Two FGDs were conducted at the same time (in parallel) with two distinct stakeholder groups. The third FGD included both groups of participants (group A and group B participants) In this third FGD, participants were tasked to present their results from the previous session, merge/discuss to identify commonalities and come up with a unified set of variables. To facilitate the FGDs, two moderators were assisted by two co-moderators (rapporteurs). These two moderators had experience in conducting FGDs and were more aware of the discussion. Therefore, they made sure that all the given steps were followed as stated in section 3. They also took notes keeping as much eye contact as possible with the participants thus making it easier for everyone to intervene. The co-moderators on the other hand were responsible for taking notes (which were later to be complemented with the recordings), monitor time and look at non-verbal communication. The co-moderators were allowed to intervene where appropriate i.e. if there was anything that required more detailing/clarification, or aspects that they found relevant. They were also in charge of the recordings. All FGDs were conducted in Spanish and later translated to English.

As already stated, during the discussion, participants in each group was tasked to identify at least three key challenging factors in collaboratively managing knowledge for multi-morbid chronic disease patients on ACP within personalized integrated care. The identified challenges were pinned on the board. For each challenge, participants were asked to identify the cause and consequence. In so doing more variables were stated. After identifying the direct and indirect causes, they then identified the direct and indirect consequences. Figure 1 depicts the structure and illustrative example of how the model was constructed.

To support participants. discussions and brainstorming, moderators were given a guiding questions and guiding steps and these were as follows:

Guiding question

“What challenges do you face in collaboratively managing knowledge for patients with multi-morbid chronic conditions on Advance Care Plan?”

Guiding steps:

The moderator affixes the problem variable in the middle of the sheet;
Request participants to specify the challenges as the moderator puts/records them on a colored post-it note, placing them one below the other, so that everyone can see them clearly;
Ask participants to identify the cause(s) for each stated challenge;
Ask participants to identify the consequences for each stated challenge; (Note: It may be that what were initially identified as challenges become causes or consequences as participants discuss);
Observe if there are imbalances between the challenges and, if so, confirm with the group;
Try to achieve consensus among participants on the final model (in both the first and second FGD sessions), prioritize a maximum of 3 challenges.

The materials used during the FGD and showed in Fig. 2 included: Post-it notes (sticky notes), recorders, cellophane paper to place the post-it notes, and markers and tape. The cellophane papers were used to stick post-it notes as participants identified the different variables. This helped to keep the walls clean.

1. Identified key challenges in collaboratively managing knowledge for patients with multi-morbid chronic conditions on Advance Care Plan

During the FGDs, three key challenges were identified i.e. culture (citizens don’t talk about death), healthcare professionals (change of attitude and perspective i.e. willingness, commitment and self-efficacy) and the system (changing the care model towards a holistic and shared care model). It was argued that one of the key challenges in collaboratively managing knowledge for multi-morbid chronic disease patients on ACP is culture i.e. predisposition of citizens and the population in general: when asked to expound on the subject, one of the participants argued that “We have to change the culture of talking little about illness and about dying. The important thing is that the disease catches us thinking, that there is a cultural change. It is also important for the public to be able or willing to talk about the disease about dying”. Another participant noted that “we are in a society that believes in survival and immortality and personalized medicine and so on., and it doesn't think that we are finite and we are going to die, we don't see dogmas and that's it”. Thus, the citizens/community is influenced, not only thinking that everything has a solution, but also that the media, generate a culture and influence on people.

The second identified key challenge to shared care planning was the healthcare professionals (HCP) change of attitude and perspective. This challenge is attributed to a number of factors e.g. the HCP’s attitude and perspectives towards ACP and patient centered care; self-efficacy (“Am I competent to develop planning with patients?”) including their readiness and engagement of practitioners/ professionals; the complex chronic patients polypharmacy management; the lack of social support; the lack of a clear guide/communication and ethics on how to work with palliative patients; and the limited time HCPs have to learn how to do things. One of the participants noted that “professionals do not dedicate time that the person needs, and this is often related to involvement, predisposition, training, culture as a chain and not knowing how to approach the subject well”.

The third identified key challenge was an institutional/system challenge i.e. changing the care model towards a holistic and shared care model. Participants noted that there is need for institutional support in planning the protocol so that the model is prioritized and not taken as a voluntarism of professionals. Participants argued that by protocolising the care model, professionals are made to commit themselves. Here, they feel that they have the support needed to develop and implement the model. Other contributing attributes to “changing to a shared care model” are: fragmented care (lack of coordination between levels of care), clashing care objectives (i.e. comfort vs survival of people), a need for coordination and communication between primary care and hospital care, and a lack of time (sometimes there are many patients to treat in a short time).

Table 2

Interpretation of identified key variables, their causes and consequences
Causes					Consequences
Fears of difficult situations			Citizenship (We don’t talk about death)	Avoidance behaviors that lead to bad quality care
Reactive approach, not preventive				Incoherent care directions that cause confusion to patients and informal carers
Culture: Taboo society and Mediterranean family There’s a solution for everything (creating unrealistic expectations) Lack of autonomy, participation, decision-making, citizenship information				Excessive use of resources
				Real lack of shared planning
				Social fragility
				unrealistic perceived need
				Difficulty to share without the information
Lack of leadership	Lack of training	Prestige of the technical over the human	Professional (change of attitude and perspective)	The Advance Care Planning (ACP) is not part of my job	Lack of reference professionals
		Change management		Lack of listening (due to time, culture, attitude)
		Technification of medicine Paternalistic academic training and fragmented		Being under pressure and emotionally overwhelmed
				Different professional behaviors Paternalist approach
		Change in priorities & inconsistencies of the system		Loss of the patient narrative/story
		Paternalism		I don’t know how to address, accompany, the end of life
Lack of knowledge of tools/difficulty on using them			System (changing the model)	Less efficient healthcare
There is no responsible team				Different messages, heterogeneous health care, fragmented health care
Lack of adaptation of administrations				Polypharmacy, multiple tests, repeated interventions
Technology not adapted to care model				Heterogeneous care
Fragmentation: culture of “this is not mine”				Unsustainable healthcare system

After identifying the three key challenges, participants were further tasked to identify the causes and consequences to these specified key challenges (see Table 2). For each identified key challenge, causes and consequences were defined. In the section below, we present participants views.

3.2. Participants supporting views on identified key challenges, their causes and consequences

Challenge 1 culture (citizens don’t talk about death): The society believes in survival, immortality and in personalized medicine, etc. therefore, it does not think that ‘we’ are finite and are going to die. Walking towards a cultural change that promotes talking about death requires willingness and predisposition of the public to talk about death. It was also noted that “healthcare professionals have to change the culture of talking less about survival and more about the disease, about dying”. The important thing is to bring about a cultural change. Several causes were identified as affecting “We don’t talk about death”. These include: a) social culture of survival: there is a widespread culture in the population that there is a need to look for tools to survive and that there is always a solution for everything thus, unrealistic expectations are spread among people. It is therefore a ‘taboo in the society’ to talk about the end of life or death. People are not comfortable thinking and talking about death; b) the cultural importance given to the family in our society: for a Mediterranean family, everything is shared with the family so, HCPs address the family directly without even asking the patient who you want to inform; c) lack of patients’ autonomy and participation; there is no training or participation in decision making and the perspective of the patient and his environment is lacking in this process; d) fears of difficult situations: in general, both the population and in many cases the HCPs are afraid to face situations that they do not know how to deal with therefore, training is necessary and a reactive approach from HCPs, not preventive.

During the FGDs, the following consequences were identified for challenge 1 culture (citizens don’t talk about death), a) Avoidance behaviors that lead to bad quality of care i.e. not wanting to talk about death; b) A more fragile society, with a poorer level of health and more dependent on the system: i.e. the lack of culture of information to normalize thinking about death, leads to a fragile society. The culture of survival creates false expectations to the patients and HCPs do not communicate and inform the patient. The result is an unsustainable and totally ineffective health system. To avoid this, the HCPs would have to talk and communicate to the patient “that their quality of life is going to be worse, and that the scanner is not going to be of any use, for example”. This however takes time and some of the patients will not understand it; c) Unrealistic perceived need: society is hindering a more rational end-of-life option because its objective is survival. “HCPs could convey that there are limits and other ways, but there is no such support from majority of the healthcare professionals”; d) Difficulty to share: the population does not feel comfortable sharing their situation and the HCPs do not know how to face conversations about the end of life with the patients; e) Real absence of shared planning of care adapted to the individual: i.e. Shared care planning is a wish, they doubt that it is a reality; f) Inconsistency of messages between levels of care: this generates confusion in patients and caregivers, thousands of contradictory information exist; which generate a bad experience. It also means that the professionals are unable to plan care well; and g) Excessive use of resources for care activity (e.g. tests, consultations, etc.).

Based on the information given, three preliminary causal-loop diagram (CLD) were built. Construction of these models was done by two facilitators who analyzed, compared and merged the resulting descriptions. The CLDs were divided into sub-models based on the three identified key challenges i.e. Culture (citizens don’t talk about death), Healthcare professionals (change of attitude and perspective towards a shared care model) and the care system (change towards a holistic and shared care model). The resulting CLD model presented in Fig. 3, depicts the participants’ views of the causes and consequences for citizenship (We don’t talk about death) challenge. The variables presented in this sub-model are based on the outcome in Table 2 and appendix B.

In Appendix C, we represent the variables as per the participants’ discussions and in Fig. 3, we made alterations/revisions to give a more meaningful representation of the causal influences. For example, the revisions made are as follows: from “we don’t talk about death” to “talking about death”; from “culture” to “social culture of survival”; from “reactive approach, not preventive” to “reactive approach from HCPs not preventive”; from “creating unrealistic expectations” to “Reality of society expectations”; from “lack of autonomy, participation, decision-making, citizenship information” to “autonomy and participation in shared care”; from “real lack of shared planning” to “absence of shared planning”; from “unrealistic perceived need” to “perceived need for ACP by the society”; from “difficulty to share without the information” to “HCP and cares’ difficulty to represent patients’ views”; from “excessive use of resources” to “use of resources”; from “bad quality care” to “quality of care”; from “incoherent care directions” to “coherency of care directions”; and from “confusion of patients and informal carers” to “patients and informal carers’ confusion on care directions”. Two variables (general belief ‘there’s a solution for everything’ and taboo society and Mediterranean family) were deleted from the initual model (Appendix C) because they we signified in variable “social culture of survival”.

Challenge 2 HCPs’ change of attitude and perspective towards a shared care model: A number of influencing factors were identified as depicted in Fig. 4. It was noted that HCPs’ primarily provide rapid response to destabilizations thus, “the emergency route is always used and work has been done to have direct access to the hospital. But it has not worked. We have routes such as the pluripathology route that is implemented, but it is not perfect”; secondly, polypharmacy management is complex for chronic patients because these type of patients contact different specialists and thus drug interactions arise. The lack of a supervisor to review and adjust the patient's medication also affects successful implementation of ACP. Furthermore, HCPs self-efficacy i.e. “Are HCPs competent to develop a planning with patients?” this includes: their readiness, willingness and commitment etc. In general, “HCPs do not dedicate the time the person needs, and this is often related to involvement, predisposition, training, culture as a chain and not knowing how to approach the subject well” which affects ACP implementation. Overall, HCPs express that they have little time to learn how to do things (Time constraints) thus, lack adequate and quality time to provide suitable response (related to the paternalistic care model).

The causes identified for challenge 2 were as follows: a) Changes in priorities and inconsistencies in the system: this influences the objectives of the work and does not allow for continuity i.e. conflicting care objectives (comfort vs. survival of people). Care objectives conflict because they are not aligned between levels. What causes this is unknown, it may be multifactorial e.g. professional training, professional culture, social culture etc. “Social culture is where there is no room on the part of many professionals, to stop polypharmacy and selling the image that we must always do something, until the end of the patient's life”. This generates more problems; b) Fragmented objectives: there are no clear objectives that are passed on to the HCPs; so often the objectives change according to the new needs, challenges or problems that appear in the health system and at the community level; c) Prestige of the technical over the human, technification of medicine: professionals tend to order tests on patients, instead of taking the time to analyze the situation, talk to the patient and seek the tools available in the system to help address the patient's health problem; d) Paternalism: the paternalistic model of sapience is a barrier, “HCPs who consider that knowledge is theirs, setting the plan for the person without considering their needs. It is necessary to make the change to listen to the needs of people and make this a working tool, seeking a balance between autonomy and support in decision making, neither professionals nor patients are used to this”. Shared planning in this patient profile is laborious; e) Fear of the HCP to face these issues because he/she does not have the training and therefore does not know how to deal with the situation.

The identified consequences for challenge 2 include: a) distance between primary and hospital: there is no communication and coordination of activities carried out by HCPs (fragmented care); b) Persistence of the paternalistic approach; c) Lack of recognition of ACP as part of clinical practice: The HCPs feel that the ACP is not part of their job, due to lack of training and support by the organization. Lack of predisposition and knowledge of HCPs. Sometimes the lack of time, which is a reality, is used as an excuse by HCPs for not doing it; d) Different behaviors of HCPs: i.e. how to approach ACP. There is a need to develop training and sharing programs among HCPs; e) HCPs feel pressured (no time for anything anymore) and emotionally overwhelmed; there is dissatisfaction, discontent, weariness; f) Lack of listening to the patient (due to time, culture, attitude); f) Loss of the patient narrative/story: the patient is no longer spoken to or about. It is impossible to focus attention on the patient if the patient's narrative is not available; g) Bad experiences: in the type of care (hyperactivity of the clinic, biased care; lack of comprehensive care, of active listening to the patient) and in the emotions generated (suffering, abandonment, dissatisfaction, burnout of the professionals).

Based on the identified variables, the sub-model in appendix D was derived. Following the same approach that was used to derive Fig. 3, we came up with a revised sub-model of appendix D with changes to some of the identified variables. For example: “change in priorities and inconsistencies of the system” was revised to “consistency of healthcare system priorities”; “lack of ACP and EHR training” was revised to “Training on shared care skills and tools for HCPs” etc. Variables like change management, different professional behavior paternalistic approach, were deleted because they were already implied within other variables or they were not well elaborated in the description text. Thus, hard to identify their causality.

Challenge 3 the system (changing the care model towards a holistic and shared care model): This challenge is affected by a number of factors: 1) Lack of institutional advocacy to support, protocolise and encourage shared care planning; 2) Confronting care objectives; 3) Fragmented care with conflicting objectives i.e. there is a lack of coordination between levels of care due to internal communication barriers between administrations; it is therefore very difficult to collaborate due to problems of access, confidentiality, etc.; 4) Limited time on the side of the HCPs because they have many patients to see in a short time to treat not only the symptom but also the person; 5) Absence of a referent professionals in primary care, to coordinate care and decision making; and 6) Difficult access to social services, they exist, but it is difficult to access them. Change to a more comprehensive model, which also includes the socio-health area.

The identified causes for challenge 3 are as follows: Participants augured that the care model is not in line with the needs of society that is why administration does not adapt to them and there is little willingness to change. Secondly, the technology is not adapted to care i.e. The developers, who are technical personnel, are not on the teams in which they talk about what is needed from these technologies, which are made up of HCPs. In addition, patients are unable to adapt to these technologies, due to lack of knowledge, possibilities, knowledge etc. “An EHR has been developed in which everyone has a vision, where the patient does not have a space”. Further, there is a Lack of knowledge of tools or difficulty in using them. Participants stated that “there are so many tools available to practitioners, that many times practitioners do not know that there is already a tool available for ACP, and in many occasions the HCPs do not know how to use the tools available in history”. Also, there is no responsible team to coordinate and follow up ACP activities. Most people work in sealed departments and “everyone writes their own story, it is not really shared, not even with the HCPs involved in a person's care”. This results in a lack of shared vision of care or teamwork i.e. There are two extremes: the one who says "this does not touch me at all" and the one who says "the patient is mine". Thus there is no focus on people's needs and a lack of firmness in the orientation towards the main target, the patient.

The identified consequences challenge 3 include: 1) Unsustainable healthcare system; 2) Multiple tests/Polypharmacy i.e. it is easier to ask for a test or to give more treatments than to talk about death; 3) Heterogeneous care: this depends on the attitude and/or commitment of the HCP; 4) Lack of listening i.e. “patient is either not there or not listened to. Everything for the patient, but without the patient”, and 5) Times are not adapted to the needs of the patient and the HCP i.e. Full schedules make it difficult to accommodate new needs. It was noted that there is an overload of tasks and appointments and if the professional cannot manage them, he cannot make changes in the way he/she works, therefore it is very difficult to adapt to the needs. Finally, there is less efficient healthcare. Figure 5 represents the various identified causes and consequences to changing the care model towards a holistic and shared care model.

In this study, we have used system thinking because it supports rational thinking and suggests actions to be taken through modeling thus giving a holistic perspective on possible solutions as countermeasures of the problem. This approach directly involves stakeholders in the model construction [49]. Success of this approach depends on clearly defining the problem and precisely formulating the question to be addressed [50]. Its importance is to collectively construct a social learning process as explained in [50, 51]) that results in building a shared and collective mental model of the problem at hand. The systems thinking approach [52] has allowed us use a set of synergistic analytic skills, to improve the capability of identifying and understanding the ACP systems, so as to predict its behavior, and devise modifications in order to produce the desired effect of improving the quality of healthcare.

Results of the co-construction participatory modeling process revealed that collaboratively managing knowledge for multi-morbid chronic disease patients on ACP experiences multiple challenges that led to poor quality of care being rendered to these patients. Among these featured are: talking about death, HCP’s attitude and perspective towards a shared care model, polypharmacy, multiple tests, repeated interventions, etc. which are a common phenomenon in ACP health management.

To give a holistic view of the complete model, we merge the sub-models in Fig. 3–5 into one depicted in Fig. 6. In this figure, there are several loops most of which are reinforcing loops. R1 loop consists of three factors: Patients’ and informal carers’ confusion on care directions reduces the quality of care and the quality of care positively influences the coherency of care directions. R2 loop consists of six factors: adaptability of technology to care model positively influences knowledge of tools and skills on using the technologies which then positively influences the change towards a holistic and shared care model. The change towards a holistic and shared care model however, reduces heterogeneous healthcare which then positively influences fragmented care with conflicting objectives. The fragmented care with conflicting objectives then reduces administration adaptation to society needs which positively influence adaptability of technology to care model. R3 loop consists of six factors: HCPs self-efficacy positively influences their commitment and willingness which then positively influences recognition of ACP as part of clinical practice. Self-efficacy affects HCPs’ abilities to offer effective support and the amount of support they provide because it requires individual self-assessment for a given a task [53]. In [53], it is further argued that, since people are more likely to attempt tasks they feel capable of enacting, it is reasonable to assume self-efficacy and willingness to support are positively related. Recognition of ACP as part of clinical practice positively influences training on shared care skills and tools for HCPs which improves coordination and communication among stakeholders. When coordination and communication among stakeholders improves, HCP’s attitude and perspective towards a shared care model also improves.

R4 loop consists of five factors: social fragility reduces autonomy and participation in shared care which then positively influences talking about death. The positive influence on talking about death leads to a reduction in the avoidance behaviors which then increases use of resources. R5 loop consists of five factors: talking about death negatively influences HCPs’ and carers’ difficulty to represent the patients’ views, this then increases social fragility. As social fragility increases, reality of society expectations reduces which negatively influences the social culture of survival. R6 loop consists of four factors: the more people talk about death, the more there is perceived need for ACP by the society, which then reduces social fragility. As social fragility reduces, autonomy and participation in shared care increases and the more people talk about death. R7 loop illustrates interdependence between HCP’s attitude and perspective towards a shared care model, willingness and commitment of the HCPs, change towards a holistic and shared care model, heterogeneous healthcare, and fragmented care with conflicting objectives. These interdependences, are explained as follows: As the HCP’s attitude and perspective towards a shared care model increases their willingness and commitment also increases which leads to an increase in the change towards a holistic and shared care model. This increase, however, leads to a decrease in heterogeneous healthcare which then leads to an increase in fragmented care with conflicting objectives, and this leads to a decrease in HCP’s attitude and perspective towards a shared care model. R8 loop, the paternalistic care model positively influences paternalistic and fragmented academic training which then negatively influences consistency of the healthcare system priorities. Consistency of the healthcare system priorities positively influences HCP’s attitude and perspective towards a shared care model which then positively influences HCP’s self-efficacy. The positive influence in HCP’s self-efficacy positively influences willingness and commitment of the HCPs which then leads to a positive influence on recognition of ACP as part of clinical practice.

The B1 loop as the HCPs’ attitude and perspective towards a shared care model increases, HCP’s self-efficacy also increases leading to a positive influence. As the HCP’s self-efficacy increases, their emotional burden reduces leading to a negative influence. The less the emotional burden the more recognition to ACP as part of clinical practice leading thus a positive influence which also leads to a positive influence to training on shared care skills and tools for HCPs. As training on shared care skills and tools for HCPs increases, coordination and communication among stakeholders also increases leading to a positive influence which then positively influences HCPs’ attitude and perspective towards a shared care mode.

In R9 loop, paternalistic care model positively influences prestige of the technical over the human which leads to positive influence on technification of medicine. As technification of medicine increases, HCPs’ attitude and perspective towards a shared care model also increases leading to a positive influence. As HCPs’ attitude and perspective towards a shared care model increases their self-efficacy also increases leading to a positive influence which also leads to an increase in their willingness and commitment. As willingness and commitment of the HCPs increases, recognition of ACP as part of clinical practice also increases which leads to a negative influence to paternalistic care model. The relationship between self-efficacy and willingness and commitment of the HCPs is supported by [54] where they argue that willingness to cooperate of individuals has a positive effect on knowledge collaboration and [55] further emphasis that self-efficacy is positively related to a willingness to cooperate. In R10 loop, fragmented care with conflicting objectives negatively influences administration adaptation to society needs which then positively influences change towards a holistic and shared care model. The increase in change towards a holistic and shared care model decreases heterogeneous healthcare leading to a negative influence. As heterogeneous healthcare increases fragmented care with conflicting objectives increases leading to a positive influence.

One of the insights identified from the CLD is that the social culture of survival provides mechanisms for raising awareness of patients’ preferences. For example, the absence of conversations about death has been identified as influencing the representations of the patients’ views and therefore feeding the narrative of that patient accurately. However, the same causal linkages suggest that an approach that ensures the HCP training on Shared Care skills will not fear the difficult situation of talking about death and therefore will have a clear understanding of the patient’s views that can be imprinted on the narrative in a reinforcing spiral.

The causal loop diagram and system insights generated in this study will therefore inform discussions between patient associations, healthcare professionals and health systems on ACP attitude and promoting actions that will support positive health outcomes. The current study is an input which presents one conceptualization of the system. There are limitations as the group modelling work was restricted to a particular region. The causal loop diagram primarily reflects the Basque context, but the high-level concepts were contrasted with a literature review considering articles between 2004–2021, restricted to English language. The three high-level concepts (talking about death, change towards a holistic and share care model and HCP’s attitude and perspective towards a shared care model) cover three out of the four knowledge areas identified from literature, namely human, organization, contextual [56–58]. The technological knowledge area was covered within the organization area in this study. All the challenging factors in implementing the ACP on the causal loop diagram have been reported in previous studies [5, 28–35, 59] which reinforce the general perspective of the results presented here. What this study adds is the system modelling that correlates those challenges and provides a detailed description of the concepts and the influences.

This study sought to identify determinants of Advance Care Planning engagement in the context of multi-morbid chronic disease patients within personalized integrated care, and how the actors involved in the care may interact and affect the creation and implementation of the ACP. A co-construction participatory modelling approach was undertaken from which the causal loop diagrams were developed. This enabled the identification of the key challenges, causes and consequences for collaboratively managing knowledge for multi-morbid chronic disease patients on ACP. This, therefore, provided a high-level concept showing how intercorrelations and detailed causal linkages between the variables that influence those concepts at a lower level. Key insights from this causal loop diagram suggest HCPs who are convinced supporters of the shared care model will drive changes both in the healthcare systems they work for and the society their patients belong to. Healthcare professionals, in turn, have to overcome the same challenge related to talking about death. The analysis suggested that the perpetuation of fragmented and paternalistic care is likely to get worse without a recognition of the ACP as a social need and a crucial part of the clinical practice part change.

This qualitative causal loop diagram also analyses the contribution of digital aids to the engagement in shared care. The results demonstrate that adapting the technology to the care model could improve the coordination and communication between HCP and patients and also between HCPs, yet could at the same time shape HCPs’ attitudes and perspectives towards a shared care model and increase the visibility of reference professionals on ACP. The attitude change is a driver of key consequences: the increase in HCP’s self-efficacy which leads to a true commitment with ACP and a decrease in the emotional burden; the active listening to patient preferences reflected on the patient’s narrative; and finally, the commitment and recognition of the ACP as part of the clinical practice.

Acknowledgement:

We express our appreciation to the focus group participants Amaia Saenz De Ormijana, Javier Urraca, Josu Gotzon, Guillermo Cairo, Adelina Perez,Maite Paino, Raquel Roca, Maria Luz Jauregui, Adolfo Delgado, Mertxe Pinedo who provided expertise that greatly improved this research.

Ethical Approval

The study was conducted in line with the ethical standards and the applicable European, international, and national law on ethical principles. Ethics approval was obtained from Basque Ethics Committee “CEIm de Euskadi”, study number PI202018. Participants provided written informed consent.

Consent to Participate

All authors have read the Springer journal policies on author responsibilities and submit this manuscript in accordance with those policies.

Consent to Publish

All authors understand journal Journal of Healthcare Informatics Research is a transformative journal. All of the material is owned by the authors.

Competing interests

The authors declare to have no competing interests as defined by Springer, or other interests that might be perceived to influence the results and/or discussion reported in this paper.

Authors' contributions

Conceptualization, EMK, AFZ, FT, AOG, DV; methodology, EMK, AFZ, FT, AOG, DV; formal analysis, IS, BZ, investigation, FT, AOG; data curation, DV, NG, IE, BL; writing—original draft preparation, FT, AOG; writing—review and editing, DV, NG, IE, EMK, AFZ; visualization, FT, AOG; supervision, EMK, AFZ, DV; project administration, EMK, AFZ, DV, AOG funding acquisition, EMK, AFZ, FT. All authors have read and agreed to the published version of the manuscript.

Funding

This work is a part of the ADLIFE project. ADLIFE has received funding from the European Union under the Horizon 2020 research and innovation programme under grant agreement no. 875209. The authors would like to thank a) all partners within ADLIFE for their cooperation and valuable contribution; b) Mujeres por Africa Fundación (5 th Science by Women programme) and c) Bizkaia Koopera of Basque Country (Spain) for enabling this research. More appreciation goes to Kronikgune Institute for Health Services Research and Makerere University for providing an enabling research environments.

Availability of data and materials

(a statement on how any datasets used can be accessed)

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No competing interests reported.

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Using a Co-Construction Participatory Modeling Approach to Understand the Complexity in Collaboratively Managing Knowledge for Multi-Morbid Chronic Disease Patients on Advance Care Plan

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Abstract

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1. Introduction

1.1. Brief background

2. Materials And Methods

2.1. Stakeholder involvement in model development

2.1.1. Stakeholder identification and categorization

2.1.2. Conducting the focus groups

3. Results

3.2. Participants supporting views on identified key challenges, their causes and consequences

4. Discussion

5. Conclusion

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References

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