Phase 1- developing the intervention
Brainstorming
Ideas group 1 started with a short presentation by the research group, introducing some background information of life-limiting nature of HF. After that, during a brainstorming session, participants were encouraged to share their experiences of bad or good communication situations in health care. Some patients described a lack of information of their HF from the health care, and emphasised the possibility to get repeated information at different time points. It was considered a problem to remember information as well. The patients also believed that bad communication could depend on the patients themselves, as many might have difficulties to pose questions to the health care professional. Family members described a lack of information on the seriousness of the illness and a wish to receive the same information as the patient. Some kind of a communication tool that could help patients and family members to ask questions would be helpful. Meeting other patients in a group discussion with a nurse as a facilitator of discussion, was suggested as one way to enhance communication.
In the brainstorming, the health care professionals described that it was difficult in clinical practice to know what had already been discussed with patients/family members. Continuity in care was considered important, and a HF nurse could have a crucial role to play in communication, as the nurse is the one that most often meets the patients/family members. Communication training for professionals as a way to improve communication was also suggested.
After hearing and discussing the participants’ experiences of communication and various ideas of communication tools/support, the researchers also presented communication interventions that had previously been used in cancer care, to be used as examples to discuss and draw inspiration from [24,25,26].
In summary, suggested ideas for interventions for the patient and their family members included:
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patient meetings in groups in which patients can support each other
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family conversations in which patients, family members and all health care professionals involved in the care can meet and discuss the future
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a list for patients and family members with questions about the HF trajectory and end-of-life care to be used as a communication tool.
Suggested ideas for interventions for health care professionals included:
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communication training in groups
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individual web-based education in communication
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role play or a film that provides a good example of a conversation
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simulation training of conversations about the HF trajectory and end-of-life care.
An important comment from the participants was that instead of focussing on one group of users (e.g. only make a tool for patients) both an intervention for the patients/family members and an intervention for the professionals could be useful to improve communication.
Prioritizing
The participants voted for the two ideas that came up in the brainstorming that they thought could make the biggest difference in improving communication. The idea of a list with questions about the HF trajectory and end-of-life care for patients and family members, and communication training for health care professionals were the two most popular ideas.
Prototyping
Two months after the first ideas group, the participants met again in an ideas group to further discuss and develop the list of questions and the communication training into prototypes. The participants brainstormed useful questions that could be included in the list and discussed useful wording and language. Following the second ideas group, the prototype of the list was further refined by the researchers, based on the suggestions from the ideas groups and relevant literature. The prototype of the list was sent to the ideas group participants for evaluation. The participants were asked to comment on the layout as well as the content. The majority of the participants found the list to be in concordance with their suggestions.
Further on, the communication training was refined into a communication course prototype by the researchers, based on the suggestions from the ideas groups. Suggested content for the course included, for example, theoretical knowledge about communication, as well as practical training using simulated conversations and role play.
The intervention
When finalizing the prototypes, the research group decided that the two prototypes, the list of questions and the communication training, should be combined into a dual component intervention and be used together. The list of questions will from now on be referred to as the QPL and the communication training will be referred to as the communication course.
The question prompt list
The QPL was designed to stimulate and facilitate patient and family member communication about the HF trajectory and end-of-life care with a health care professional. The QPL is a 7-page A4 booklet, containing 45 questions grouped into the topics: 1) Heart failure and what to expect in the future 2) Help and support at deterioration 3) End-of-life care issues 4) Additional questions for the family members 5) Additional questions for the person with an ICD/CRT/PM. The purpose of the QPL is to function as an aid for patients and family members at clinical appointments, and encourage them to ask questions that are relevant to them about the HF trajectory and end-of-life care. They can also add more questions that are not in the list. The QPL is expected to function as a communication tool to help the patients and families to be more involved in the care.
The communication course
The communication course is web-based with one face-to-face practical training day, designed to be applicable for health care professionals who work in cardiology. Nurses in cardiology and palliative care and a behavioural scientist act as course leaders. Participants take the course at their own convenience. It is based on adult learning principles using self-directed learning [27] and includes several teaching methods (Table 2).
The learning goals of the course are for the participants to expand their knowledge about communication about the HF trajectory and end-of-life care, and to improve on their own knowledge, confidence and skills in communications. The QPL is an important tool in the course and the participants are expected to learn to use the QPL as a communication tool in the course and to gain the needed knowledge, confidence and skills required to discuss the questions in the QPL with patients and family members. Another important part of the course is the practical training with simulated patients (actors) and family members (volunteer course participants), where the participants practice using the QPL in a simulated conversation. Constructive feedback on their performance is provided by course leaders, the simulated patients and family members, as well as the other participants in the course.
Phase 2, testing the intervention
Acceptability: Participants’ satisfaction with, and reactions to the course
The participants were asked to evaluate the course, using close-ended (Table 3) and open-ended questions. They described that they took the course simultaneously with their clinical jobs and reported to have spent 10–30 h on the course. The participants expressed that the course had helped them to reflect on their professional role in discussions about the HF trajectory and end-of-life care, which made them more confident in discussions without worrying about providing the “correct” answers to patients and family members. All the participants evaluated the seven lectures to be of importance for their learning and most evaluated the three individual tasks worthwhile to do. They reported that meeting colleagues to discuss and learn from each other as well as practicing having conversations with simulated patients and family members during the training day was valuable. Overall, the participants were satisfied with the content of the course and how it was delivered, but some (n = 5) would have preferred to have one additional face-to-face training day as a follow-up. The majority of the participants had no technical problems with the web -site, but 3 participants reported difficulties to view one of the lectures. All participants would recommend the course to a colleague. After completing task 3 (using the QPL in clinical practice), most (n = 11) reported that the QPL would be useful in future clinical conversations, but they thought that the QPL could be shortened.
Limited efficacy
In a pre-post-test, questions from the QPL that would mirror the learning goals of the course were included, assessing the participants’ self-reported knowledge, confidence and skills for each question. For the majority of the participants, on most of the questions their knowledge, confidence and skills was reported to have increased after the course (Figs. 3 and 4). However, the participants reported after the course to have less knowledge, confidence and skills to discuss two of the questions in part 2 of the questionnaire, concerning who the patient/family member can talk to about the things that worry them.