Purpose of the PSP and background
The purpose of this protocol is to clearly set out the aims, objectives, and commitments of the Long-Term Care Residents with Severe Mental Illness Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.
The JLA is a non-profit making initiative, established in 2004. It brings residents, caregivers, and staff together in PSPs. These PSPs identify and prioritize the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to residents, caregivers, and staff. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials, and Studies Coordinating Centre (NETSCC), University of Southampton.
Over the past few decades, severe mental illness (e.g., mania, schizophrenia, bipolar, severe depression) among long-term care residents has been steadily increasing. According to the World Health Organization’s (2022) Framework for Countries to Achieve an Integrated Continuum of Long-Term Care, an integrated continuum of long-term care needs to be person-centered and uphold the human rights of older persons, caregivers, and care workers in a way that is accessible, affordable, and equitable. Thus, we believe that long-term care residents with severe mental illness should have the right to mental health services.
In 2014, Saskatchewan’s Mental Health and Addictions Action Plan recommendations were presented by Dr. Fern Stockdale Winder in her report, Working Together for Change: A 10 Year Mental Health and Addictions Action Plan for Saskatchewan. In her report, one of Dr. Winder’s recommendations was to address the mental health and addictions needs of Saskatchewan’s aging population by beginning with long-term care and home care services. To do so, Dr. Winder suggested that care cultures that improve mental health be promoted within long-term care homes and that staff in long-term care and home care be provided with formal training in mental health and addictions issues most experienced by older adults and enhance resourcing to better respond to identified needs. Despite these promising recommendations, the extent to which the recommendations have been followed is limited.
Many unanswered questions remain with regards to the experiences of long-term care residents living with severe mental illness, and even less is known about the needs of long-term care residents living with severe mental illness within the Saskatchewan context. Thus, the goal of the proposed project is to bring Saskatchewan long-term care residents, their caregivers, and relevant care professionals together to identify evidence uncertainties for long-term care residents living with severe mental illness. More specifically, our objective is to produce a Top 10 list of research priorities for Saskatchewan long-term care residents living with severe mental illness by way of a James Lind Alliance Priority Setting Partnership.
Aims and objectives
The aim of the Long-Term Care Residents with Severe Mental Illness PSP is to identify the unanswered questions about severe mental illness in long-term care from the perspective of residents, caregivers, and staff and then prioritize those questions that residents, caregivers and staffs agree are the most important for research to address.
The objectives of the PSP are to:
- work with residents, caregivers, and staff to identify uncertainties and needs of long-term care residents who are living with severe mental illness to better address them
- to agree by consensus a prioritized list of those uncertainties for research
- to publicize the results of the PSP and process
- to take the results to research commissioning bodies to be considered for funding
The scope of the Long-Term Care Residents with Severe Mental Illness PSP is defined as:
- access to and quality of mental health care currently provided to long-term care residents living with severe mental illness
- possible solutions to address mental health needs of long-term care residents living with severe mental illness
The PSP will exclude from its scope questions about:
- access to and quality of mental health care currently provided to long-term care residents not living with severe mental illness
- access to and quality of mental health care currently provided to caregivers and staff
- possible solutions to address mental health needs of long-term care residents not living with severe mental illness
- possible solutions to address severe mental health needs of long-term care caregivers and staff
The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
The Steering Group
The Steering Group includes membership of long-term care residents living with severe mental illness, their caregivers, and staff, as well as individuals or representatives from a relevant group.
The Long-Term Care Residents with Severe Mental Illness PSP will be led and managed by a Steering Group involving the following:
Staff Representatives
- Frank Suchorab, Registered Nurse and Executive Director/CEO at Oliver Lodge, Saskatoon, Saskatchewan
- Michael Antiola, Registered Nurse at Sherbrooke Community Centre, Saskatoon, Saskatchewan
- Marlie Chovin, Unit Support Worker at Circle Drive Special Care Home, Saskatoon, Saskatchewan
- Jennifer Lyster, Physical` Therapist Assistant in Saskatoon, Saskatchewan
- Jennifer Gagate, Nursing Unit Coordinator of Battlefords District Care Centre, in North Battleford, Saskatchewan
- Kelly Fish, Director of Continuing Care in Rural Health, Pangman, Saskatchewan
- Susan Larson, Psychiatric Nurse in Regina, Saskatchewan
Caregiver representative
- Tammy Done, Caregiver of long-term care resident living with severe mental illness, Saskatoon, Saskatchewan
Resident representative
- Our team is still recruiting resident participants.
Co-Leads
- Natasha Gallant, Principal Investigator, University of Regina
- Kelsey Haczkewicz, Co-Investigator, University of Regina
- Mir Nabila Ashraf, Co-Investigator, University of Regina
Project coordinator
- Chelsea Russill, Research Coordinator, University of Regina
Research personnel
- Zona Iftikhar, Research Assistant, University of Regina
- Olivia Ryan, Research Assistant, University of Regina
James Lind Alliance Adviser and Chair of the Steering Group
- Louise Dunford
The Steering Group will agree the resources, including time and expertise, that they will be able to contribute to each stage of the process, with input and advice from the JLA.
Partners
Organizations and individuals will be invited to be involved with the PSP as partners. Partners are organizations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organizations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:
- Saskatchewan Health Authority (SHA)
- Staff who work in long-term care with residents who live with severe mental illness
- Caregivers of long-term care residents living with severe mental illness
- Health and social care professionals with experience working with individuals living with severe mental illness
Exclusion Criteria
Any individuals from outside of Saskatchewan will be excluded from this PSP. Some organizations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organizations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
Methods
This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website at www.jla.nihr.ac.uk where examples of the work of other JLA PSPs can be seen.
Step 1: Identification and invitation of potential partners
Potential partner organizations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Long-Term Care Residents with Severe Mental Illness PSP.
Step 2: Initial Meeting
PSPs will need to raise awareness of their proposed activity among their resident, caregivers and staff communities, in order to secure support and participation. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g., via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:
- to present the proposed plan for the PSP
- to generate support for the process
- to encourage participation in the process
- to initiate discussion, answer questions and address concerns.
Step 3: Identifying treatment uncertainties
The Long-Term Care Residents with Severe Mental Illness PSP will carry out a consultation to gather uncertainties from residents, caregivers, and staff. A period of 12 months will be given to complete this exercise (which may be revised by the Steering Group if required).
The Steering Group will use the following methods to reach the target groups:
- online surveys
- paper-and-pencil surveys
- tablet surveys
- telephone surveys
Existing sources of evidence uncertainties may also be searched. We have begun to research recommendations in systematic reviews and clinical guidelines. The PSP will also include systematic reviews being prepared and registers of ongoing research.
Step 4: Refining questions and uncertainties
The consultation process will produce ‘raw’ questions and comments indicating residents’, caregivers’, and staff areas of uncertainty. These raw questions will be categorized and refined by the established research team into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.
This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.
The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by Kelsey Haczkewicz and Mir Nabila Ashraf. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritization. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.
Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by Kelsey Haczkewicz and Mir Nabila Ashraf. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, considering any changes made at the final workshop, in order to ensure that PSP results are publicly available.
The Steering Group will also consider how it will deal with submitted questions that have been answered and questions that are out of scope.
Step 5: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritize through consensus the identified uncertainties about long-term care residents with severe mental illness. This will involve input from residents, caregivers, and staff. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritization.
- Interim prioritization is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree on the method and consider how best to reach and engage residents, caregivers, and staff in the process. The most highly ranked questions (i.e., approximately 25) will be taken to a final priority setting workshop. Where the interim prioritization does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritization.
- The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 residents, caregivers, and staff will be recruited to participate in a day of discussion and ranking to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of findings and research
The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders, and the residents and long-term care communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.
It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritized. The dissemination of the results of the PSP will be led by Dr. Natasha Gallant, Kelsey Haczkewicz, and Mir Nabila Ashraf.
The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to jla@soton.ac.uk.
Agreement of the Steering Group
The Long-Term Care Residents with Severe Mental Illness PSP Steering Group agreed the content and direction of this Protocol on July 20, 2023.