Design
The current study was a pragmatic, qualitative feasibility study [36] comprising interviews, thematic analysis and panel-based discussions; the study was designed to involve frail older patients and their relatives to the highest possible HCPIC-level of involvement, ideally forming a transitional care PPI panel for future research projects. The research was conducted pre-Covid.
People involved
The individuals invited to be involved were a group of patients, some of their relatives and a small predefined group of three HCPs. Eligible patients were frail, hospitalised because of acute illness and aged 75 years or older. Given the study’s explorative nature, we considered nine or more patients and relatives and a minimum of two HCPs to be enough to attain sufficient information power [37]. The HCPs (MEJJ, EMD, MG) were all involved in designing the study, and one of them (MEJJ) was also involved in finding and inviting eligible patients. All patients were admitted to the geriatric ward at Aarhus University Hospital between February 5 and March 15, 2019. The ward consists of 32 single-bed rooms and includes geriatric patients admitted with stroke, orthopaedic and medical conditions. Patients undergoing palliative care, stroke and orthopaedic treatment were excluded. We did not expect involvement based entirely on the patients’ or relatives’ initiative to be successful. Instead the patients were convenience sampled based on a clinical eligibility assessment made by three experienced medical doctors who invited the eligible patients to be interviewed. We did not involve patients who were considered at risk of exhaustion, further functional decline or of delirium or any other harmful event by being involved. In case of the development of delirium, the patient was excluded from further involvement. Frailty status was assessed using the MPI, which defines frailty as a MPI score > 0.33. Recognising the value of the relatives’ experiences and to support the patients, patients’ relatives were also encouraged to join if the patient consented. The patients and their relatives were provided with a booklet (Additional file 1) that described the intended involvement process and PROM in lay terms. The information material was written by collaboration between the HCPs. The HCPs (two medical doctors (EMD, MEJJ) and one specialist nurse (MG) engaged in frailty- and transitional care research) were reinvolved at the end of data collection. The number of HCPs was deliberately lower than the number of patients and relatives to address potential power differentials.
Involvement level and involvement steps
Several involvement evaluation models have been developed [18, 38]; however, there is no consensus on a uniform model that can objectively describe the degree of involvement in research. We found the Health Canada Public Involvement Continuum (HCPIC) [16, 20] useful and easy to understand; the model describes patient involvement as a continuum divided into five levels, where all involvement levels are valuable and the different levels meet the different needs and capabilities among those involved. The model illustrates the increasing level of collaboration between researchers and the involved people as the involvement moves from unidirectional communication and consulting towards involvement in a co-productive partnership.
Given the involved patients’ frailty, a pragmatic involvement approach was needed. To achieve the maximum level of involvement and adherence during the study, the study frame allowed for continuous recruitment and drop-in and drop-out throughout the research process [39]. Six steps were defined based on the intended course of the study (Fig. 1). The first step was to ensure patient involvement and consent to further involvement. Prior to each step, oral consent was reverified. The second step was to conduct individual interviews while the patients were still in the hospital. The third step was to conduct postdischarge interviews in the patients’ homes, nursing homes or rehabilitation centres. The fourth step was to organise an expert panel meeting with the attendance of patients and relatives. The fifth step was to conduct the expert panel meeting and involve the panel members in the data analysis and development of PROMs. The final step was to seek to enter into a long-term collaboration and involve patients and relatives in new research projects as research partners.
Collecting data: interviews and reflective notes
The purpose of the interviews was to clarify the patients’ experiences during discharge, thus providing data for the subsequent thematic analysis [40]. Data consisted of pre- and postdischarge interviews with patients and relatives, as well as the interviewer’s reflective notes.
The patients were interviewed in their single-bed room on the day before discharge. A relative was also interviewed if the patient desired. The interviewer (TKH), who is a PhD student and specialty registrar in geriatric medicine, presented himself as the study’s contact person before informally introducing the study, the objectives of being involved and the interview subject. The interviewer explicitly underlined that the talk should not concern the patient’s medical history. The aim was not to evaluate the previous care or caregivers but rather to have a casual talk about subjects of relevance to the patient regarding the concept of being an inpatient awaiting discharge. The interview concept allowed flexibility for dialogue. None of the interviews were limited by time, allowing for a relationship to form between the interviewer and interviewees. To maintain confidentiality and a trustful atmosphere, the interviews were not audio recorded. The patients and relatives could stop the interview at any point. The predefined probing questions asked were as follows: ‘In your opinion, what is most important to ensure a successful discharge from the hospital?’ and ‘What could be done to make you feel secure during discharge and the following days?’ The researcher noted the keywords and sentences mentioned by the patients and relatives during the interview, as well as the researcher’s own reflections that emerged as the interview proceeded.
The patients and relatives were then offered a second interview after discharge, which was either performed in the patient’s residence or on the phone. An appointment was scheduled to take place between two to four days after discharge. The interviewer resumed the keywords and topics from the first interview. The focus of the second interview was the discharge process and transitional care as a whole given the new circumstances of having left the hospital environment. Three predefined questions were asked, as follows: ‘How do you feel, now that you are at home (if the patient was discharged home)?’, ‘Do you wish anything to be different?’ and ‘Has anything changed regarding your view on the discharge process since our last talk?’ The interviewer again made notes as appropriate during the talk. By the end of the second interview, the patients and interviewed relatives were invited to participate in an expert panel meeting back at the hospital later on. If accepted, a reminder phone call was scheduled.
Data analysis: theme formation and expert panel
Data were manually analysed by the interviewer using a thematic analysis [41]. A pseudomised written summary was made based on the interview keywords. Emerging categories were then grouped in themes, and each were elaborated on using descriptive text. Subsequently, all interviewees were invited to form an expert panel together with the HCPs, further developing the derived themes and drawing up PROMs for future use. The expert panel meeting took place on April 9, 2019. Along with the invitation, the themes were listed in lay terms. The patients and relatives were offered transportation, further information and other supportive arrangements, if needed. They were also allowed to select a stand-in representative or to bring a companion. The meeting took place in the hospital in a calm conference room away from the ward the patients had previously been admitted to. The interviewer acted as a facilitator, welcoming the panel members and emphasising the importance of an open and equal dialogue. The attendees were offered refreshments. The meeting was scheduled to last approximately two hours, but this time limit was flexible. The panel was given two main tasks: 1) to discuss, rank and validate the identified themes and 2), if possible, to establish PROMs based on the findings. The discussion was based on a short introduction of each theme. The themes were printed in individual colours and scattered on the table like pieces in a puzzle, encouraging those present to single out the most important themes. The panel was also asked to validate each theme. Based on the dialogue, the panel summarised the discussion and proposed PROMs. Before wrapping up the meeting the non-HCP panel members were invited to be involved in further research as part of a steering committee in future research projects. After the meeting, all the attending panel members were invited to comment on the written summaries and the PROMs, which were elaborated on by one of the HCP panel members (MG) and the interviewer.
To assess the degree of equality and the benefits of cooperation between the patients, relatives and researchers in the involvement process, the non-HCP participants later received a prepaid envelope and a printed questionnaire to be filled in at home (Additional file 2).
Ethical considerations
All patient data regarding MPI frailty level was derived from an ongoing quality development project approved by the Regional Research Ethics Committee, Central Denmark Region (journal no. 197/2017). No patient consent form was needed, and referral was not required. All participants could decline being involved at any point.