Inspired by the James Lind Alliance (JLA) (1), this project’s needs-led research (NLR) process is outlined in Figure 1, and consists of five steps: narrowing the theme, steering group meeting, gathering input through a survey, data processing and interim priority setting, and final priority setting. JLA uses the term ‘evidence uncertainties’ to define the unanswered questions that are identified and prioritised during this process. This article will refer to these as ‘input’.
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The scope was ‘performance of the trust model within community home-based health care services’, with representatives of service users, next of kin and clinicians as stakeholders. Through the five steps, efforts were made to involve an appropriate and balanced representation of stakeholders in order to minimise the risk of overlooking research options and to make sure that the prioritisation corresponds to the needs of those who will benefit from the research priorities (7).
Step 1: Narrowing the theme
‘Performance of the trust model’ can be understood in different ways and with variations in content. For the purpose of narrowing the theme, clinicians, service-user and next of kin organisations, members of senior citizens' councils and the Patient Ombudsman were invited to a workshop. The aim was to brainstorm on important aspects regarding the overall theme (7). We wanted the stakeholders to say something about which areas they considered most relevant for research (10). Eighteen representatives participated, evenly distributed among the groups they represented. The first author started the workshop with a presentation of the meeting agenda and some general information including the aim for the workshop. The participants were then divided into three groups. Each group consisted of representatives for service users, next of kin and clinicians, and had a group leader and a minute taker. First, the participants were invited to write down key words on themes, thoughts and experiences regarding the scope. Yellow post-it notes were used for this exercise, which lasted about five minutes. Second, the participants shared and elaborated their notes with the others, and simultaneously systematised the key words they thought belonged together or had similar aspects on a larger white sheet of paper they were given beforehand. Third, they started discussing the notes and were asked to reformulate their grouping into areas or themes using pink post-it notes. The session and discussion in each group lasted for approximately one hour. The aim for this session was to create an opportunity for everyone to talk and elaborate important aspects regarding performance of the trust model. Inspired by qualitative research, the goal was to promote dialogue between the participants (12). They followed each other's stories, offered comments and sometimes different perspectives, which led to full descriptions and perhaps new understandings (12). To ensure a safe environment for all the participants to talk, we started out with small groups. According to Korstjens and Moser (13), the advantage of small groups is that they give participants more time to elaborate on their perspectives and stories, thus they contribute more detailed information. The feedback received afterwards was that the group composition and dynamics were good, and many felt that they benefited from sharing experiences and thoughts with each other in this way. The representatives used the opportunity to ask each other questions about the different groups of service users, issues regarding home-based services, and especially the involvement of service users and next of kin within the services. All three groups reported active participation from all the representatives. After a break, everyone gathered and each group presented its topics, thoughts and/or experiences. Many of the areas were similar, and there were no major differences in what the groups talked about. Then there was a discussion in the larger group, and several participants continued to share and problematise the performance of the trust model. This helped create a form of consensus about the areas and themes that had been raised (13). The aim for the meeting was to reach consensus on one or more themes to proceed with in the needs-led research process, but his was not doable. Input in the form of 73 submissions was collected, which provided direction for further focus. In addition, important and useful submissions related to the performance of the trust model were received, and several connections to the field were established.
Step 2: Steering group
The term steering group is inspired by JLA (1) with the aim of ensuring user involvement in all steps of the process. The group members were not co-researchers, but rather a group that should provide consultation, input, and a connection to the field, as well as influence the steps in the process and the choices made. As experts in their field, they were asked to contribute with their insight and knowledge about the group within the research field they represented. They are familiar with current debates through their affiliation with patient organisations (14) or the home-based services. Two key arguments for involving the research field are to ensure participatory democracy, which is supported by ethical arguments and enshrined in human rights (14). It is also reported to generate better and more relevant decisions, and to create better opportunities and support for further work or changes if needed (14). The steering group consisted of six members: three representatives from the home-based health care services, two service user representatives and one next of kin. Input from the brainstorming session was presented and discussed and served as the basis for the next step. There was consensus amongst the steering group members that the focus should be on the clinician/user level. The steering group members were concerned about whether the trust model provided more accurate and better services, more service user and next of kin involvement, and how the work was performed in practice. This was the starting point for the online survey questions in Step 3. The questions were formulated and accepted by the members present at the steering group meeting. A summary and a draft of the survey were subsequently distributed to all the members, offering them the opportunity to comment on the topics being discussed or on the questions in the survey. We received comments from one member, representing the home-based health care services, related to wording in the survey, and the text was altered accordingly.
Step 3: Gathering input through the online survey
The survey consisted of some general questions about whether or not the informant was a service user, next of kin or a clinician, age, degree of familiarity with and experience of the trust model. Then followed some information about what the services should contain and what they should deliver within the trust model. This was based on the overall standards the municipality itself had published. There were two versions of the main question: one to clinicians and one to service users and next of kin.
The clinicians were asked: ‘Home-based health care services should be provided through small teams with more user involvement, based on the question "What matters to you?”, with more competent and empowered staff, and with increased interdisciplinary cooperation. If you think about your experience with home-based health care services, what do you think we should investigate within this area?’.
The service users and next of kin were asked: ‘Home-based health care services should be provided through small teams where the user and relatives should help determine what the service should be, based on the question “What matters to you?”. You should have competent service providers who can make decisions with you when it comes to your services or the services of the person to whom you are next of kin. The staff will work across professions to provide you with good services that are interconnected. If you think about your experience with home-based health care services, what do you think we should investigate within this area?’
The trust model was deliberately not mentioned in the question, based on feedback from the steering group. Most of the service users and next of kin have never heard about the trust model and would therefore most likely lack sufficient knowledge to comment on it. The representatives from the services agreed, since several clinicians wold also likely have difficulties answering what the trust model contained. Therefore, the decision was made to focus on what the services should contain or deliver. The questions were open-ended to encourage full responses regarding experiences and perceptions of service users, next of kin and clinicians (8).
When distributing the online survey, the organisations that participated in the workshop (Step 1) shared information and links to the survey with their members using their existing communication platforms. Centrally located clinicians in the municipality received information and the link via e-mail, and distributed them in appropriate networks within the community. This ensured that all leaders in home-based health care services received the information and were encouraged to both respond to and share the link with their employees.
The questionnaire was published in early January and stayed open for four weeks. 106 respondents and 221 submissions were collected. Most of the respondents came from the home-based health care services (Figure 2).
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Respondents representing clinicians were leaders, occupational therapists, physiotherapists, nurses, nutritionists and unskilled workers.
Step 4: Data processing and interim priority
The aim for this step was to review the input – 73 submissions from Step 1 and 221 submissions from Step 3 – and organise them into thematic groups. Many of the submissions were formulated more like comments or statements than questions. To accommodate and include these, a thematic approach was found appropriate. The researchers went through all the submissions, grouping and discussing them. Seven themes were created, and 16 research questions developed during this process (see table 1 for an overview of the themes with examples of input). The steering group was involved in the process of verifying the interpretations and clarifying the questions. They received all the input, groupings, and questions that were created and were asked to give feedback. One single feedback was received, regarding ease of understanding for a couple of the questions, which were altered accordingly.
Table 1. Examples from the thematisation process
Examples of input
Examples of research questions
- What are success criteria for successful interdisciplinary cooperation?
- How is systematic work in interdisciplinary collaboration facilitated organisationally?
- The importance of interdisciplinarity in the teams?
How is interdisciplinary collaboration performed in small teams?
- Has it become easier or more difficult to ensure that personnel with the right competence are assigned to patients where this competence is necessary?
- Core competence: To clarify what competence the service needs for different positions and roles in order to have competent and empowered employees: e.g. observational competence of employees
- Competence to assess the user's functional ability and cognitive status?
What interdisciplinary competencies do the employees in the teams need, and how do they make best possible use of these competencies?
Assistive technology and digitalisation in the service
- More on assistive technology because more things are becoming electronic and there are still many who have not understood that it will become more digital with time.
- Training and information about it should be more prioritised.
- Research more on how different departments work on the services
How are assistive technology and digitalisation implemented and used within interdisciplinary teams?
Organisations and leadership
- How does the trust model contribute to an organisation that provides more tailored and flexible services?
- What significance do organisation and management have for the performance of small interdisciplinary teams?
Early intervention/ preventive services
- Is there still more focus on nursing than on rehabilitation?
- Do they manage to integrate reablement as well?
- The rehabilitation services in specialist health care are reduced, and it is expected that the municipalities will provide rehabilitation to a greater extent. The districts are falling behind in stepping up rehabilitation services to meet these requirements (of the trust model). How will the districts manage to step up and organise the service to meet users in need of rehabilitation?
How does the trust model ensure early intervention and preventive work?
Exercise of authority and profession
- Roles and responsibilities in the trust model – how has it affected employees and the organisation?
- The term ‘empowered employees’ and independent professional practice is often used in connection with the trust model. Do employees feel that they have been given more authority and a greater degree of independence in their professional practice? Do the employees experience wider scope of action?
How are roles and responsibilities exercised by employees in the trust model?
User and next of kin involvement
- The goal of having small teams and a few people to relate to is not implemented in practice. This causes frustration among both users and next of kin.
- How the services involve relatives in planning, design, implementation and evaluation of the services and how next of kin experience it?
- Whether the trust model gives users an experience of better interdisciplinary collaboration and fewer people to relate to, whether they are assigned a ‘primary contact’ and whether they have good contact with her/him.
How do users and next of kin experience involvement in the process of allocating services when exercising the trust model?
Step 5: Final priority setting
The aim for final priority setting was to develop a list of the top 10 research questions on performance of the trust model within community home-based health care services. The aim for the list is to highlight important areas for research, but not necessarily to come up with the specific research questions (1). Invitations were widely distributed to service users, next of kin and clinicians in March, but because of the Covid-19 outbreak the planned workshop for final priority setting had to be cancelled. An online survey was therefore conducted based on the 16 question from the interim priority setting. The respondents were asked to select a maximum of 10 questions they considered most important and were asked to comment on why they considered those questions important. The survey was widely distributed to service users-, and next-of-kin organisations, members of senior citizens' councils, the Patient Ombudsman and clinicians. The survey was open for 14 days. Thirty-five respondents answered, consisting of employees, users, next of kin and others (Figure 3).
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‘Others’ represent e.g. members of senior citizens' councils, chairs of supervisory committees for short-stay institutions and nursing homes, politicians and volunteers. Before the top 10 list was published, it was submitted to the steering group in order to achieve consensus.