The Danish, hematological adaptation of SICP was developed and evaluated by following the outlined framework in the updated guidelines for complex interventions by the UK Medical Research Council (MRC) under the following headings: Development phase, feasibility and piloting, evaluation phase, and implementation phase (Fig. 1). The charted phases are a part of a dynamic process, and as such these four stages will usually not follow a linear progress [8].
Development Phase
Preliminary study
From April to June 2018, we conducted a preliminary field study in the Department of Hematology at Copenhagen University Hospital in Denmark (Rigshospitalet) to convey professional and organizational barriers. Health care professionals (doctors, nurses, and secretaries) at the Department of Hematology were observed during daily routines and conversations with patients where treatments options were presented, and decisions for the treatment had to be made. Focused interviews and two workshops were conducted with 10 myeloma patients, 4 doctors, and 25 nurses treating multiple myeloma (MM). These interviews focused on how to better enable shared decision making as well as to communicate about care goals and hope while balancing both optimism and realism. Pattern recognition method was applied for analyzing the interview data [9]. This preliminary field study provided us with several insights into some of the complex clinical challenge of timely EOL care with patients with hematological disease. Some of these important insights were: The patients experienced doctors being reluctant to talk about death and serious illness with patients. This, despite patients requesting an overall understanding of their disease and general information about disease trajectory, including most likely and worst-case scenarios. The doctors expressed being afraid of compromising patients’ hope by being realistic about the disease. However, the doctors’ fear of “killing the patient’s hope” and their undifferentiated optimism also seemed to prevent patients and their caregivers from preparing for a worst-case scenario, as well as for planning and talking about EOL issues. Furthermore, the health care professionals of the Department of Hematology expressed how enhancing the interdisciplinary cooperation between doctors and nurses around the patients would benefit a more balanced dialogue with focus on the treatment possibilities on one hand and the patient’s QOL, preferences, and treatment goals on the other hand. The insights gained from the preliminary study informed the development process.
Action research design
Translation, adaptation, and integration of systems level communication programs such as the SICP is complex and requires more than just language translation. An interpretation of meaning of the components of the original program is needed and must be adapted to local socio-cultural factors and local workflows. We chose the framework of an action research project to guide this process [10], connecting everyday practice and research through participant involvement. A key element within action research is that new knowledge emerges as a result of shared experiences between researchers and participants, and that knowledge is context specific [11]. An intervention that is based on action research becomes contextualized to the specific situation as well as the individuals and groups that the intervention is aimed at [12]. We co-created the adaptation process with a group of 5 haematological doctors, 5 nurses, 6 patients with haematological malignancies, and 4 caregivers from October 2019 to March 2020. Four of the haematological doctors and four nurses also constituted the pilot-group for testing the training course prior to the implementation of the adapted SICP.
The adapted SICP concept
The adapted SICP at the hematology department at Rigshospitalet is an interdisciplinary and systematic consultation with multiple myeloma (MM) patients and their caregivers offered throughout the disease trajectory. The focus of the conversation is on both practical and existential issues, regarding prognosis, worries, hopes, and wishes for the future as chosen by the patient and caregiver. The adapted concept is characterized by 1) Nurses and doctors being trained together as a team focusing the conversation with patient and caregiver on both prognosis as well as the existential issues. 2) The conversation is “unhurried” as one hour is allocated for both conversation and documentation. 3) Patients and caregivers receive preparatory material prior to the conversation. The preparatory material facilitates prior reflection about level of prognostic information, quality of life, existential issues, and helps the patient and caregiver decide which concerns to focus upon during the conversation.
The nurses and doctors attend a prior training course which includes: 1) Advance preparation and video demonstration of conversation, 2) reflective exercises: Discussing personal experiences and barriers, 3) presentation of the SICP concept, materials, and prior evidence for the study, 4) conversation practice: Improvised participatory theatre guided by professional actors and an experienced psychologist moderator. The actors acted authentic scenes of the myeloma clinic. The nurses and doctors would use a conversation guide and a conversation aid to help train the structure of the conversation during the training as well as the material prepared by patient and caregiver. Improvised participatory theatre was used intensively to engage healthcare professionals in conversations about invitation to SICP, setting an agenda, discussing prognosis, and responding to emotions. It allows the participants to train and reflect with peers on their personal communication [13].
Evaluation Phase
For evaluating the effectiveness of the adapted SICP concept as well as understanding the processes of change, a combination of quantitative and qualitative methods for the evaluation was performed. This approach allowed for method triangulation by using different methods to collect data concerning the same phenomenon [14]. This increased the validity of the study results and enabled an evaluation of the course that also explored the different understandings and meaning that occurs through both group and dyad dynamic [15].
Qualitative interviews were performed with patients, caregivers, nurses, and doctors to obtain their qualitative experiences about the concept and the prior training, and a before-and-after questionnaire with nurses and doctors participating in the adapted SICP, as well as a control-group of nurses and doctors not involved. Two validated scales constituted the questionnaire. The first scale was distributed to both nurses and doctors. The scale assessed the doctors’ and nurses’ perceived importance of engaging in existential communication (EMAP). It involved 12 questions whereas six of them involved a specific communication competence, and then each of these were followed up by another question asking: “How important is it for you to be able to do this in your daily work?” (see table 1a) that allowed the participants to assess, on a Likert scale from 1 to 5 (with 1 being ‘not at all’ and 5 being ‘very much’) [16]. The second scale was only distributed to the doctors, as it was a validated self-efficacy scale for doctors measuring their perceived ability to perform advanced care planning (ACP-SE) [17]. The scale included questions on self-efficacy scoring as “how confident do you feel being able to…..” followed by 18 different skills and competencies on a Likert scale from 1 to 5 (1 equals ‘not at all confident’ and 5 equals ‘very confident’) (see table 1b). Perceived importance and self-efficacy as outcome have been widely used for self-assessment of the outcome of communication skills training [18]. Social psychologist Albert Bandura introduced the construct of self-efficacy, and it refers to a person’s own estimate of his or her ability to perform a specific task or behavior successfully [19, 20]. This combination of evaluation has been applied with success in similar studies involving complex interventions on improving existential communication in healthcare [21, 22].
Insert table 1a: Existential Communication Scale (EMAP)
Insert table 1b: Advance Care Planning Self-Efficacy Scale (ACP-SE)
Feasibility And Piloting Phase
Participants and setting
All in all, 32 nurses and doctors (four groups of prior training course) participated in the first rounds of implementation, 23 (14 doctors and 9 nurses) completed the questionnaire, and 55 nurses and doctors were in the control-group. All in all, 78 participants answered a questionnaire, 63 were females and 15 males. The characteristics of the 78 participants are presented in table 2.
Insert Table 2: Participants characteristics
The four doctors and four nurses of the pilot-group participated in two focus group interviews for doctors and nurses, respectively. Each doctor-nurse dyad had carried out between 2 and 12 conversations of the adapted SICP prior to the focus group interviews. As the cooperation between the nurses and doctors was an important aspect of the concept, the dyads were separated during the focus group interviews to better access their experiences with them working as a team. The cooperation of nurses and doctors has also been addressed elsewhere in a submitted article. The first author conducted the focus group interview using a moderator guide with an explorative approach, which was intended to elaborate on relevant aspects of the adapted concept and the collaboration of nurses and doctors. The focus group interviews for the nurses were conducted 18 weeks after the training course had been held, and the focus group interview for the doctors were conducted 36 weeks after (due to illness it had to be rescheduled). The length of the two focus group interviews was 73 and 76 minutes.
A total of 46 eligible patients were included during this preliminary implementation of the concept and 37/46 (80%) accepted the invitation. We were able to carry out 29 SICP conversations before the restrictions due to Covid-19. Hereafter, we carried out 12 semi-structured qualitative dyad-interviews with patients (n = 12) and caregivers (n = 11) about their experiences of the concept. The first and second author conducted the dyad interviews. Patients were male (n = 8) and female (n = 4). Caregivers were male (N = 3) and female (n = 8). The length of the interviews varied between 34–67 min (mean 55). The dyad interviews were conducted 2–20 days (mean 8) after the patient and caregiver had participated in a SICP conversation. During the interviews the importance of the participants own descriptions were emphasized and they were prompted with ‘what’ and ‘how’ questions to further describe, expand, and clarify their experiences and meanings. The patients’ and caregivers’ experience of the SICP conversation has also been addressed elsewhere [5].
Analysis
The measurement of ‘before’ was used as a baseline for comparison with those made ‘after’ and the control group. Paired samples t-test were used to determine if before, control and after-test scores differed significantly. P-values were considered significant (< 0.05). Statistical analyses were performed by the third author.
Analysis of the transcribed interviews with patients and caregivers was performed based on Interpretative Phenomenological Analysis (IPA) and Reflexive Thematic Analysis was used for analyzing the focus group interviews. IPA is a qualitative research methodology committed to the examination of how people make sense of their life experiences [23]. IPA is grounded in phenomenology and hermeneutics. Through IPA, it is possible to explore nuances as well as shared and opposing experiences concerning the same phenomenon within a small group of participants [24]. This method is particularly relevant to this study as we were interested in a deeper and nuanced understanding of the participants’ experiences of the adapted SICP concept. The outlined process of this analysis of the data material followed the steps: Re-reading the data, Initial noting, Developing themes, Searching for connections across themes and Looking for patterns across cases [23].
Reflexive Thematic Analysis was applied for analyzing the transcribed focus group interviews with nurses and doctors [25]. It is a theoretically flexible approach for analyzing qualitative data and can be applied across a range of theoretical and epistemological approaches [25, 26]. It was considered an appropriate method as we combined focus group interviews of health care professionals with dyadic interviews of patients and caregivers to understand the experience of the interdisciplinary cooperation during the conversations. Thematic Analysis was used to search for themes by analyzing the data for detail and identify patterns of meanings across the dataset [25]. The analysis was carried out in six steps by first, second and last author bringing in different theoretical conceptions and understanding to the analysis through a nursing, medical, and psychological perspective.
The first, second, and last author conducted the qualitative analysis. Methodological rigor was upheld throughout both processes by the authors repeatedly discussing the themes and making sure they matched the participants’ statements.
Evaluation Phase
In the evaluation phase, results from both quantitative and qualitative data were generated.
Quantitative results
There were no significant correlations between before and after on either of the two scales. On EMAP there was a significant correlation (0.02) between the control-group and after participation, indicating that the doctors and nurses who had participated in training and SICP conversations expressed having more confidence in addressing - and finding it important to address - patients’ existential concerns than those not being a part of the SICP implementation. However, as there was no significance before-and-after it cannot be indicated that the course itself significantly increased participants confidence and sense of importance (see table 3).
Insert: Table 3: Results of the questionnaire
Among the individual questions within the two scales, seven questions showed significant difference from before to after the course or between participants and control group (see table 4).
Insert: Table 4: Questions with significant variance
Significant correlations between the control-group and after participation on two questions were found: “How confident are you that you can successfully develop a care plan with the patient based on his or her existential and/or spiritual needs?” (control mean 3.35, after mean 3.78) and “Determine when there should be a shift in care goals?” (control mean 3.39, after mean 3.93). This indicates that the doctors and nurses who had participated in the course were more confident than the control-group in their abilities to include existential and spiritual aspects, as well as making necessary changes in the patient’s goals of care, if needed.
Two questions showed significance on before-and-after measuring. These were: “How confident are you that you can successfully talk with the patient about his or her existential concerns and needs in relation to the illness?” (before mean 3.52, after mean 3.91) and “How important is it (that you can successfully reflect on the existential and/or spiritual values and concerns together with the patient?) for you to be able to do this in your daily work?” (before mean 3.7, after mean 4.00). This could indicate that participants’ confidence in facilitating existential conversation with patients, and their sense of importance of patients’ existential values and concerns, had increased during the course. However, the question: “How important is it (that you can successfully reflect on the existential and/or spiritual values and concerns together with the patient?) for you to be able to do this in your daily work?”, also showed significance between control-group and before (control mean 3.5, before mean 3.71) indicating the participants already before participating in the course found patients’ existential values and concerns important for their work. This may be supported by significant correlation between control-group and before on two other questions: “Respond empathetically to patient’s and family’s concerns?” (control mean 3.94, before mean 4.57) and “How important is it (that you can successfully address your own barriers for communicating with the patient about his or her existential and/or spiritual topics?) for you to be able to do this in your daily work?” (control mean = 4.11, before mean = 4.43). These two questions concern how nurses and doctors assess their own abilities to be emphatical and address own barriers as important for doing their jobs. This could indicate that the participants in the first rounds of implementation of the adapted SICP were already aware of the importance of compassionate care as well as strengthening the existential aspects of advanced care planning before entering the training of the concept.
Furthermore, there was also significance between control-group and before on the question: “How important is it (that you can successfully talk with the patient about his or her existential concerns and needs in relation to the illness) for you to be able to do this in your daily work?” (control mean 3.50, before mean 3.71), as well as there was significance on this question on before and after (before mean 3.71, after mean 4.00). This could indicate that the participating group was more concerned about the importance of patients’ existential concerns and needs than the control group.
The analysis of the questionnaire data points to that participants might increase confidence in their own abilities to include existential and spiritual aspects in patient care and make changes in care plan, if needed. It also seemed that nurses and doctors who find it important to care for patients’ existential needs and concerns and believe this to be an important part of their job were more likely to participate in the SICP concept. This could indicate that the participating group may have volunteered due to prior interest and sense of importance of patients’ existential values and concerns. However, it may also indicate that the implementation of the SICP concept facilitated a focus on the importance of compassionate care and existential aspects of advanced care planning among the participants prior to the actual participation.
Qualitative evaluation
This qualitative analysis points to the importance of interdisciplinarity of the nurse and doctor in SICP. Through the interdisciplinary collaboration, the patient’s and caregiver’s preferences are integrated in the treatment and care plan which is the key to achieving the best care, and it strengthens conversations involving medical, holistic, and existential issues. The interdisciplinary collaboration was characterized by three main themes: 1) Importance of relationships, 2) Complementary perspectives, and 3) The common goal. Analysis of focus group interviews also indicated that the adapted SICP concept improved interdisciplinary collaboration between nurses and doctors, and they believed it facilitated a better care for patients and caregivers. The analysis indicated that implementation of early SICP conversations with patients and caregivers is feasible in a hematological setting and that the adapted SICP concept was able to overcome barriers for offering more existential consultations in hematology.
The analysis of the dyad interviews with patients and caregivers has been presented elsewhere [5]. Three themes emerged concerning patients and caregivers’ experiences with the concept: 1) Transforming patient-caregiver communication; the SICP conversation seemed to affect communication between patients and caregivers before, during, and after the actual conversation. 2) Redeeming communication; because enough time was allocated for the conversation, patients and caregivers would address more important in-depth issues and express frustrations and other feelings. 3) Equality in communication in an unequal relation; patients and caregivers emphasized experiencing equality in the conversation, despite the unequal relation that constitutes the relationship between patient and healthcare professionals. It particularly seemed how time allocated for the conversation and the preparatory materials for the conversations highly influenced patients and caregivers’ outcome of the conversation, where they could address both medical - and existential issues that would help them live life better with multiple myeloma.
