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Abstract
Introduction Internationally, the number of individuals living with dementia continues to rise. Individuals living with dementia, their care partners and their care team face many barriers and challenges to accessing dementia care resources and supports. One solution to address the multifaceted care needs of this population is patient navigation (PN).
Methods and analysis This protocol describes the implementation and evaluation plan for a pilot PN programme in New Brunswick (NB) Canada for individuals living with dementia, their care partners and care providers. This project will include two components: (1) an in-person PN programme called Navigating Dementia NB/ Naviguer la démence NB and (2) two virtual peer-to-peer navigational support groups. The PN programme will be codesigned with stakeholders including researchers, patient partners, clinicians and health system managers. Patient navigators will be housed at six primary care sites across the province and the services will be offered in English and French. We will conduct a mixed-methods evaluation to explore the characteristics and experiences of participants who enrol in the PN programme and the navigational support groups, as well as the facilitators and barriers to implementation. Data collection will include navigation charts, Facebook analytics, as well as postintervention surveys, semistructured interviews and focus groups. All participants will provide written informed consent to take part in the intervention and have their data collected for research and evaluation purposes. Demographic data will be analysed using frequency and central tendency measures, while qualitative data from interviews and focus groups will undergo thematic analysis. Content analysis will be used to analyse posts published to the Facebook groups. The evaluation will assess the programme’s effectiveness in the short and medium terms, evaluating its ability to achieve the intended outcomes.
Ethics and dissemination This study has been approved by the research ethics boards at the University of New Brunswick, Université de Moncton, Horizon Health Network and Vitalité Health Network. Knowledge translation activities (eg, presentations at local, national and international conferences; publications for open-access journals; reports and lay summaries) will be undertaken to share the findings from this pilot project with diverse stakeholders, such as decision-makers, health system managers, clinicians and the general public.
- Patient Navigation
- Dementia
- Health Services for the Aged
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Strengths and limitations of this study
This patient navigation programme will be developed through a codesign process, involving collaboration among the research team, the patient and family advisory committee and relevant representatives from the regional health authorities (eg, directors and clinic managers).
Patient navigators will be integrated within existing clinical practice sites, which will facilitate collaboration within and across settings and systems and increase access to resources.
Patient navigation services will be offered in both official languages of New Brunswick, Canada, which are English and French.
This programme will be implemented in six sites across one Atlantic Canadian province, resulting in a narrow geographical representation.
Introduction
Background
Globally, an estimated 55 million people are living with dementia, and this number will continue to rise as the ageing population increases worldwide.1 In Canada, the number of individuals living with dementia is sharply increasing; with over 600 000 people currently living with dementia and that number is projected to triple over the next 30 years.2 Individuals living with dementia and their care partners face many barriers and challenges, including a lack of knowledge and information about dementia and the services available, as well as limited access to health and social care.3–7 Furthermore, although health and social care providers often provide some aspects of care coordination as a component of their role, they often lack time, training and awareness of resources to fully support individuals living with dementia and their care partners.8–10
One solution to address the multifaceted care needs of individuals living with dementia and their care partners is patient navigation (PN). Although definitions of PN vary across the literature, it is generally described as a patient-centred approach intended to proactively guide, support and orient patients through health and social care systems, matching patients’ unmet needs to appropriate resources to decrease fragmentation, improve access and promote the integration of care.11–14 Current evidence supports PN as a feasible and cost-effective model for individuals living with dementia and their care partners.3 11 15 16 A systematic review assessing PN programmes for individuals living with dementia and their care partners provides evidence for the benefits of PN in delaying institutionalisation of individuals living with dementia, decreasing perceived care partner burden and improving care partner self-efficacy.15
Two recent scoping reviews examined characteristics of PN programmes for individuals living with dementia and their care partners.17 18 Both scoping reviews reported that successful PN programmes had a combination of information support, referrals to appropriate services or resources, and care coordination. PN programmes were offered through a variety of modalities (eg, in person, phone and online), and were tailored to meet individual needs.17 18 Kokorelias et al18 reported that employing qualified staff who were trained in dementia navigation was also a key factor in the success of PN programmes. PN programmes were also more successful if they included collaboration with multiple health and social care providers, as well as other relevant organisations.18 The integration of navigators into healthcare teams is a central tenet of PN, as this optimises patient care.12
To gain a better understanding of the current state of PN programmes for individuals living with dementia in Canada, Doucet et al19 conducted an environmental scan which explored the characteristics of existing PN programmes for this population. This environmental scan identified 11 PN programmes across six Canadian provinces. Six organisations reported that the navigator(s) worked as part of an integrated team to deliver the service. The most common types of care providers on the team were social workers (n=4) and nurses (n=4), followed by primary care providers (n=2), occupational therapists (n=2), psychologists (n=1) and geriatricians (n=1). The two most common services provided by all PN programmes were providing emotional support to individuals living with dementia/care partners and facilitating linkages to community social supports. Other PN activities included building capacity of care partners by providing advice and support, identifying barriers to care, assisting the individuals living with dementia/care partner in addressing these barriers, providing tailored education and support and assessing individuals living with dementia/care partner needs for assistance and resources. These PN programmes facilitate access by delivering navigational services in multiple ways, including by telephone, in-person or via web-based services.19 This environmental scan showed that PN programmes are not implemented consistently across Canada and most regions lack structured PN programmes. As such, this scan provides useful information to support the development of a PN programme for dementia care in regions that would benefit from this model of care, as well as to inform the ongoing implementation of existing programmes.
The current study
New Brunswick (NB) is a province in Atlantic Canada with a population of approximately 775 610 people, with 22.8% aged 65 years and older.20 NB faces the challenge of having one of the country’s oldest populations, with an estimated 11 800 individuals living with dementia.2 Much like the rest of Canada, dementia care in NB is often described as fragmented, uncoordinated and often difficult to navigate.4 In response to these challenges, a New Brunswick Aging Strategy21 was developed to promote a provincial culture of person-centred care and support for all seniors, including those living with dementia and their care partners.21 However, a recent report published by CanAge1 stated that NB is still not ‘Dementia-Ready’ (eg, inadequate supportive policies and supports and resources). The report describes a lack of established care pathways for patients, their families and care providers navigating dementia care.1 Another challenge is that approximately 49% of the population in NB live in rural areas.22 Given that there are often limited dementia-related support and education services in rural communities, navigational support is especially important in these settings.4 23
As a precursor to the current project, our research team conducted a provincial needs assessment to explore potential characteristics of a PN programme that could be implemented in the NB context.24 The needs assessment identified the following challenges for dementia care in NB: a pervasive lack of knowledge and education about dementia; lack of early dementia navigation support for individuals living with dementia; lack of navigational support for care providers; wait lists for services; siloed systems and resources and discontinuity of care. In light of these findings, it was recommended that a PN programme is needed that focuses on care coordination and communication among health and social care providers, to ensure that patients get the appropriate services and resources at the appropriate time.24 The results of the needs assessment informed the current study in dementia care navigation.
The overarching goals of the current study are to support individuals living with dementia, their care partners and care providers through in-person and virtual navigation services, and to improve health and system outcomes that will enable ageing in place. This will be achieved by piloting and evaluating a PN programme in NB for individuals living with dementia, their care partners and care providers. The goals of this PN programme include the following: (1) increasing the knowledge of relevant health and social services and resources among individuals living with dementia, their care partners and members of the care teams; (2) improving access to health and social services and resources through connection to in-person and virtual navigation services and (3) improving communication pathways that promote the integration and coordination of care. This project will include two components: (1) an in-person and virtually delivered PN programme and (2) two virtual peer-to-peer navigational support groups, hosted on Facebook and moderated by individuals with lived experience and patient navigators. These two online navigational support groups will target individuals living with dementia and care partners of individuals living with dementia, respectively.
The evaluation of this programme will answer the following research questions:
What are the characteristics of participants in the PN programme and the virtual peer-to-peer navigational support groups?
What are the levels of participant satisfaction with the PN programme and the virtual peer-to-peer navigational support groups?
What are the experiences of participants in the PN programme and the virtual peer-to-peer navigational support groups?
What are the contextual barriers and facilitators to developing and implementing a province wide bilingual PN programme for individuals with dementia, their care partners and members of the care team?
Methods and analysis
Study design
This study will be carried out over approximately two and a half years (March 2022–October 2024). The first phase will last 6 months and will include a codesign process to develop the programme, which is described below. After this codesign period, we will pilot the PN programme for 12 months. The final 12 months of the project will involve a mixed-methods evaluation of the PN programme and knowledge translation activities.25 Quantitative data will be collected through PN chart data and from online postintervention surveys. Qualitative data will be collected through PN chart data and postintervention semistructured interviews and focus groups with participants and relevant stakeholders.
Study setting
This PN programme will be implemented in NB, Canada. The PN programme will be situated at six primary care sites across the province: four Anglophone sites and two Francophone sites. Integrating patient navigators within existing clinical practice sites will be crucial because this will facilitate collaboration within and across settings and systems and increase capacity to support their clients’ health and social care needs.
We will use the Facebook platform to create two private online peer-to-peer navigational support groups for individuals living with dementia and care partners of individuals living with dementia. Both groups will be closed to the public and moderated by members of the research team and members of our patient and family advisory committee. This widely used platform is free, accessible through mobile and browser applications and contains a simple interface for online navigation. Facebook presents an opportunity to connect individuals living with dementia and care partners with peers in their communities, as well as to facilitate and improve access to navigational support.
Codesign
Patient navigation intervention
The codesign phase will involve the establishment of advisory committees to oversee the project. An executive committee will be established to oversee all aspects of the study, from project development to knowledge dissemination and will consist of the research team leads, research coordinators and representatives from our patient and family advisory committee. The patient and family advisory committee will consist of individuals living with dementia as well as care partners of individuals living with dementia who reside in NB. Finally, an operations committee will be established to oversee the implementation of the PN programme and will consist of the research team leads, the research coordinators and relevant representatives from the regional health authorities (eg, directors and clinic managers). The operations committee will collaborate to select the most appropriate clinical sites for this intervention and to manage day-to-day operations of the intervention. The PN programme will be developed in collaboration with members from the advisory committees to help determine the characteristics of the PN intervention and ensure that the patient navigator role is tailored to the local communities. Patient navigators will be hired through the regional health authorities and will be located within the participating health clinics or community health centres. Individuals with professional backgrounds in any health or social care field (eg, nursing, social work and care coordination) will be considered for the patient navigator positions. All patient navigators will be required to complete training in both PN and dementia care. Mandatory training will include completion of a Patient Navigation Certificate course, which is offered virtually through a Canadian academic institution. Patient navigators will also be required to complete a series of learning modules offered by a provincial Alzheimer Society. With this formalised training, patient navigators will be prepared to offer a standardised level of care across all intervention sites. Since PN is a patient-centred model of care, navigators will also provide care that is adaptable and appropriate within the context of their participant’s case and within each clinical site. In accordance with their training, patient navigators will prioritise identifying gaps in care and helping to address barriers to accessing care. This support may involve setting care goals, coordinating care and transitions, educating patients and caregivers and connecting them with relevant health, social care and community resources. Notably, PN does not encompass clinical tasks like medication reviews, physical assessments, or formal counselling.
Navigational support group
The virtual peer-to-peer navigational support groups will be developed and launched on the Facebook platform. There will be two private groups, one for individuals who identify as a person living with dementia and the other for individuals who identify as a care partner of an individual living with dementia. These Facebook groups will be managed by the research team and the patient and family advisory committee. We will first develop group names, group descriptions, screening questions and group rules. Next, administrators and moderators will be established. A member of the research team will be the administrator for the Facebook groups. Moderators will include two members of the patient and family advisory committee and one patient navigator (on a rotating basis). We will develop a guide for group moderators and administrators. This guide will outline procedures for accepting new members to these private groups, posting content on the Facebook pages, and responding to group member posts and comments.
Participants and recruitment
Patient navigation intervention
Individuals must meet criteria to be enrolled in this study. All participants must reside in NB and live in the community (ie, not in a long-term care facility or adult residential care facility). A person can participate if they have a diagnosis of dementia, are actively seeking services to obtain a diagnosis or are in the process of receiving a dementia diagnosis. All participants must provide written informed consent to take part in the intervention and to have their data collected for research and evaluation purposes. Individuals who do not have the capacity to consent must have a legally authorised substitute decision-maker consent on their behalf. A substitute decision-maker is someone who has the legal authority to give or deny consent for treatment (eg, medical care, admission to a care facility or personal assistance services) on behalf of an individual who is incapable of making such decisions. In this study, a substitute decision-maker must provide documentation proving their legal decision-making authority for the individual taking part in the navigation programme. Participants can enrol on their own or with a care partner. For the purposes of this study, a care partner participant is defined as an individual who provides informal and unpaid care or support for an individual living with dementia. A care partner can also enrol on their own and seek support for themselves or to help them provide better care for the person for whom they provide informal support/care. For the purposes of this study, a care provider participant is defined as a health or social care provider who provides care for individuals living with dementia and their care partners. There are no age requirements to access the PN programme.
Navigational support group
To become a member of one of the private Facebook groups, an individual must request to join and meet specific admission criteria. For the current study, these criteria will include identifying as a person living with dementia or a caregiver of someone with dementia, residing in NB and providing informed consent for data collection from the Facebook group. Members of the navigational support group must also have access to the internet and have a Facebook account. Only members can post, participate and view the shared content and member list within these private groups.
Recruitment
Advertisements about the study will be circulated in print (eg, programme brochures, provincial newspapers and community newsletters) and through social media forums (eg, Facebook). Referrals to the PN programme and the navigational support group will be facilitated through the clinical sites and the Alzheimer Society of NB’s First Link programme, as well as through community outreach, including physician offices. Potential participants will be directed to the patient navigator in their region for more information about the navigation service. Patient navigators will also provide their participants with information on how to join the navigational support groups.
Data collection
Individuals interested in participating in the PN programme or the navigational support group will be provided with an informed consent form explaining that this intervention is part of a research project and providing information about the study. Prospective participants must provide written consent to be enrolled in the PN programme and/or the navigation support groups and must consent to having their data collected for research and evaluation purposes. It is possible that an individual living with dementia may not have the ability to provide informed consent to participate in this study. In this event, the individual living with dementia will provide assent to participant and a legally authorised substitute decision-maker will provide informed consent on their behalf. A PN chart will be created for each participant enrolling in the PN programme and will include a standardised intake interview. This intake interview will consist of a demographic questionnaire, the collection of relevant medical history and the development of goals to meet participants’ needs. The patient navigator will track contact with both the participant as well as members of their care team throughout the duration of the participants involvement in the study. This will include tracking the number of hours the navigator spends with the participant and the mode of interaction (ie, in person vs virtual). We will explore the experiences of participants who enrol in the PN programme and the navigational support groups using (1) navigation chart data; (2) Facebook analytics; (3) postintervention surveys and (4) postintervention semistructured interviews.
Navigation chart data
For the PN programme, all patient navigators will collect participant data and store it in a secure database (ie, SharePoint) that is accessible to designated members of the research team. This information will be collected for the purposes of the PN programme and will not be linked to electronic health records. The following demographic information will be collected from each participant: age, gender, primary language, setting (urban/rural), ethnicity, education, income and employment status. In addition, the following data will be collected from each navigation chart: dementia diagnosis information (if applicable), service needs and service use, goals to meet service needs, number/type of goals met/not met, number of calls/emails, number of meetings, as well as the number and type of services and resources the participant is connected with.
Facebook data
We will collect data from the navigational support groups manually and using Facebook analytics. Data will include number of members, popular days, popular times, numbers of posts, types of posts and post content. Deidentified posts, and their associated comments and reactions, will be catalogued using Microsoft Excel throughout the 12 month implementation phase.
Postintervention surveys
When a participant’s file is closed in the PN programme, the study coordinator will send the participant a follow-up survey. The survey will be completed online (using Qualtrics XM), as a paper copy (via mail) or by phone. This 38-item survey, developed by the research team, includes items related to participant demographics, dementia diagnosis and satisfaction with the programme (see online supplemental appendix A). The survey questions will be rated on a 5-point scale (very dissatisfied to very satisfied) and will assess satisfaction with the patient navigator; satisfaction with the services they received; satisfaction with navigation materials and resources received from the navigator; knowledge of health and social services and resources; access to health and social services and resources; confidence in ability to navigate health and social care systems; social isolation and loneliness; perceptions of supports and clinical care in place to help the person with dementia age in their community and communication and care integration with the team. Surveys will be sent to all participants. If participants encounter difficulties completing a survey due to cognitive impairment, they may be assisted by a legally authorised substitute decision-maker to complete the survey. Surveys will also be sent to participants in the navigational support groups starting 10 months post implementation (ie, launch of the Facebook groups). This 16-item support group survey, developed by the research team, includes items related to participant demographics, general Facebook use unrelated to the current project, as well as their activity in, and satisfaction with, the navigational support groups (see online supplemental appendix A).
Supplemental material
Semistructured interviews
When a PN participant’s file is closed, the study coordinator will send the participant an invitation to take part in an interview with a member of the research team. The semistructured interview guide was developed by the research team and includes 12 questions to assess participants’ experiences with the PN programme. These questions relate to knowledge gained, resources and services accessed and interactions with the patient navigators (see online supplemental appendix B). Participants in the navigation support groups will also be invited to take part in semistructured interviews starting 10 months post implementation (ie, launch of the Facebook groups). The support group semistructured interview guide was developed by the research team and includes 11 questions to assess participants’ experiences with the navigational support groups (see online supplemental appendix B). These questions relate to knowledge gained, resources and services accessed and interactions with other group members. If participants encounter difficulties completing the interview due to cognitive impairment, they may be assisted by a legally authorised substitute decision-maker to complete the interview. All interviews will take place via telephone or via video conferencing.
Supplemental material
Focus groups
Data collection to assess the barriers and facilitators to implementation across the various sites will involve focus groups with members from the research team, key stakeholders from the programme’s various clinical sites, the patient navigators and members of the advisory committees. The focus group guide was developed by the research team and includes six questions to assess facilitators and barriers to developing and implementing the PN programme (see online supplemental appendix C). Each stakeholder group will have its own focus group, which will take place via video conferencing at the end of the programme pilot.
Supplemental material
Data analysis
Sample size
The total number of participants at each of the six PN sites will depend on the needs of each community; however, we anticipate recruiting approximately 50 participants per navigator, for a total of 300 participants over the course of 12 months. We anticipate recruiting approximately 100 participants to participate in each virtual peer-to-peer navigational support groups. All participants of the PN intervention and navigational support group will be sent a postintervention survey. A power analysis was not conducted as descriptive statistics will be used to explore the quantitative data.
For the semistructured interviews, we aim to recruit approximately 10 participants per patient navigator site for a total of approximately 60 interview participants. Focus groups will be conducted separately for each stakeholder group (n=4), comprising approximately six participants per group, totalling 30 individuals overall. Several guidelines are available to determine an appropriate sample size for qualitative data analysis, and these suggestions vary depending on the qualitative analysis approach being used. The concept of information power is applied in this study to support the chosen sample size. Rather than solely relying on subjective assessments of data saturation, information power suggests that the appropriate sample size depends on the study aim, sample specificity, theoretical background, quality of dialogue and analysis strategy.26 27 For the current study, the broad aim of exploring experiences, facilitators and barriers suggests a need for more participants. However, our sample is highly specific, consisting of participants enrolled in the PN programme, which suggests a need for fewer participants. With experienced, well-trained interviewers, high-quality dialogue is expected, reducing the number of participants needed. The study’s theoretical foundation and the researchers’ expertise also support a smaller sample size. However, planning for thematic analysis across participants may necessitate a larger number of participants. Considering these factors, a moderate provisional sample size of 30 was chosen, but it will be reviewed throughout the research process.26 27
Quantitative analysis
Quantitative data will be used to explore the characteristics of participants in the PN intervention and the virtual navigational support groups. Quantitative data analysis will be conducted with the assistance of IBM SPSS Statistics software. Measures of frequency and central tendency will be used to report participant characteristics and to describe the sample. Descriptive statistics will also be used to assess participant satisfaction based on postintervention survey data, with frequency counts (percentages) provided for overall levels of patient satisfaction and across various aspects of the PN intervention and navigational support groups.
Qualitative analysis
Qualitative data will be used to explore the experiences of participants in the PN programme and the virtual peer-to-peer navigational support groups, as well as the contextual barriers and facilitators to developing and implementing this PN programme. Qualitative data will be organised and analysed with the assistance of NVivo software and thematic analysis, using a codebook, will be employed to explore the interview and focus group data. Guided by Braun and Clarke’s six phases of thematic analysis,28 29 the research team will analyse the qualitative data to explore participants’ experiences with the delivery of the PN programme and navigational support groups, as well as facilitators and barriers to programme development and implementation. The six phases of thematic analysis are as follows: (1) familiarise oneself with data; (2) code data; (3) generate initial themes; (4) develop and review themes; (5) define and name themes; and (6) provide the report.
Content analysis will be used to analyse posts published to the Facebook groups by group members, moderators and administrators. Content analysis differs from thematic analysis in that it aims to provide a mixed-methods approach to describing a phenomenon (ie, qualitative coding and use of quantitative counts), whereas thematic analysis provides a detailed description of qualitative data.28–30 Specifically, content within the posts will be used to determine post categorisation, which include informational, emotional or inquiry (ie, centred around a question). This analysis will provide an insight into how the groups are used to communicate and exchange support. This approach is consistent with previous investigations of social media groups for health-related communication.31
Patient and public involvement
This protocol was developed based on a needs assessment involving input from various stakeholders, including patients, care partners and care providers. Patient partners were also consulted in the development of a grant application and reviewed the grant material. This project will involve significant oversight from patient partners and other key stakeholders. A patient and family advisory committee will assist in overseeing the development and implementation of the PN intervention and will collaborate with other research team members on creating and implementing the online virtual support groups. This committee will also be involved in data analysis and knowledge translation activities. An operations committee will also be established to oversee the implementation of the PN programme and will include representatives from the regional health authorities (eg, directors and clinic managers). They will work with the research team to select suitable clinical sites for the intervention and manage its daily operations.
Ethics and dissemination
Ethics approval
This study has been approved by the research ethics boards at the University of New Brunswick # 2022-060, Université de Moncton, Horizon Health Network #2022-3106 and Vitalité Health Network #101 562.
Knowledge translation
Knowledge translation activities will include presentations at local, national and international conferences to share information about the project and key findings. Additionally, we will prepare publications for open-access journals; a report for the clinical sites and provincial government to summarise the programme’s implementation and outcomes and a lay summary of the results for the general public. We will also meet with each of the clinical sites to share the findings. This will provide opportunities to discuss what worked well and where there are opportunities for improvement. This is an important step to learn about best practices and to support the sustainability of the project going forward. We will also share our findings and lessons learnt with other stakeholders across NB and Canada who have an interest in implementing a PN programme for individuals living with dementia, their care partners, and the care team.
Ethics statements
Patient consent for publication
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors SD is the guarantor. SD and AL guided the development of the patient navigation (PN) programme and the evaluation methodology and assisted with preparing and reviewing the manuscript. LM assisted in developing the evaluation methodology and assisted in the preparation and review of the manuscript. PJ guided the development of the PN programme, supported the development of the evaluation methodology and reviewed the manuscript. KF supported the development of the PN programme and the evaluation methodology and reviewed the manuscript.
Funding This work was supported by a Healthy Seniors Pilot Project grant (P006).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.