Adapting Cognitive Remediation Group Therapy as an Online or Hybrid Intervention for People Aging With HIV and Cognitive Concerns: Focus Group Protocol

Abstract

Cognitive impairment is a significant health issue for people aging with HIV/AIDS. Cognitive challenges can include forgetfulness, trouble concentrating, and increasing struggles to learn new skills, all of which contribute to poorer mental health and decreased quality of life. Although there is no specific drug therapy that can reverse the brain impairment, group therapies may help people aging with HIV and cognitive challenges to better cope with their symptoms when combined with their usual medical treatment and follow-up. This community-based study will involve peer-led focus groups to discuss cognitive remediation group therapy – a combination of mindfulness-based stress reduction and brain training activities tested in a pilot randomized, controlled trial – as an in-person intervention for people aging with HIV in 2019. Via a brief demographic survey and technology-mediated focus groups (n = 40) in Ontario and Saskatchewan, we will determine how the intervention could be adapted in an online or hybrid format considering the ongoing COVID-19 pandemic. Content analysis will be employed whereby a team of independent coders will code the focus group transcripts in line with the co-design framework and “Double Diamond” model of developing interventions, including intervention structure, content, and mode of delivery. Given the aging of the HIV population in Canada, increasing support will be required in addition to medical care to improve quality of life, and proactively address concerns about cognition. This protocol provides a roadmap for adapting in-person psychosocial interventions using community-based and technology-mediated methods.

Keywords

focus groups community-based research methods in qualitative inquiry virtual environments action research

Background

HIV and Aging

As the HIV/AIDS epidemic enters its fifth decade, aging with the virus has become a priority area of focus due to new HIV diagnoses among older adults and increased life expectancy for people living with HIV. In Canada, approximately half of the population living with HIV is now over fifty (Bourgeois et al., 2017), with 24.6% of new HIV diagnoses in 2017 occurring in this age group (McMillan et al., 2020; Public Health Agency of Canada, 2021). The Canadian provinces of Ontario and Saskatchewan are the setting of this study. In Ontario, the number of people over the age of 45 diagnosed with HIV increased from 2551 to 10,063 between 2000 and 2015 (Ontario HIV Epidemiology and Surveillance Initiative, 2018) and those figures have continued to rise. Saskatchewan has the highest rate of new HIV infections in Canada, with the 40+ age group exhibiting the highest proportion of new infections (36.8/100,000) in the latest epidemiological report (Saskatchewan Ministry of Health, 2018). Life expectancy for people living with HIV who initiate treatment early, consistently adhere to combination antiretroviral therapy (cART), and are retained in HIV care may now be comparable to that of the general population (Wandeler et al., 2016). However, aging-related comorbidities may present at an earlier age and in greater frequency among people living with HIV than among their seronegative peers (Ahn et al., 2019; Allavena et al., 2018; Wandeler et al., 2016). HIV-related cognitive impairment is among the most common of these challenges (Allavena et al., 2018; Greene et al., 2015; Alford & Vera, 2018).

Psychosocial Support for Cognitive Impairment

Cognitive impairment is a significant comorbidity for people aging with HIV, yet biomedical interventions to improve cognition have largely been unsuccessful (Watkins & Treisman, 2015). Psychosocial support is needed to reduce the impacts, such as stress, anxiety, and poor coping, associated with irreversible health conditions (Gao et al., 2020). However, there is a paucity of cognition-focused psychosocial therapies tailored for people aging with HIV (Tedaldi et al., 2015). Those individuals have identified group interventions as their preferred approach to address cognitive challenges accompanying living with HIV (Illa et al., 2014; Liboro et al., 2019). Groups can foster social connection and reduce isolation, which is prevalent for people facing cognitive challenges (Eaton, 2021; Illa et al., 2014). Further, combination psychosocial interventions that blend strategies and discussion to ameliorate HIV-related health concerns may have better outcomes than single technique approaches (Evans et al., 2019). Our team has developed cognitive remediation group therapy (CRGT), a combination psychosocial intervention that was piloted in person amongst people aging with HIV and cognitive concerns in Canada in 2019 (Eaton et al., 2019, 2021). However, psychosocial interventions are increasingly being adapted as online or hybrid models due to the ongoing COVID-19 pandemic, and shifts in healthcare delivery towards online and hybrid formats appear to be lasting changes (Kasparian et al., 2022; Ye et al., 2022).

Summary of Preparatory and Pilot Research

This protocol is grounded in the needs of people aging with HIV in the context of community-based and clinical HIV organizations in Ontario and Saskatchewan. Our team has interviewed Ontario-based HIV service providers to learn about how they address cognitive challenges faced by people aging with HIV. The predominant response was that they implement educational sessions (Liboro et al., 2018). We have also interviewed people aging with HIV and cognitive concerns in Ontario. They identified a need for models of support that extend beyond these educational sessions (Illa et al., 2014; Liboro et al., 2019).

In response to these requests from people aging with HIV, our community-based team conducted a pilot RCT in 2019 to evaluate the novel CRGT model—combining MBSR and BTA in group therapy—against an active control of mutual aid group therapy for people diagnosed with mild-to-moderate HIV-Associated Neurocognitive Disorder (HAND) (Eaton et al., 2019, 2021). In this pilot, CRGT demonstrated better or equal results to mutual aid on outcomes of feasibility, acceptability, fidelity, stress, anxiety, coping, and use of mindfulness and BTA (Eaton et al., 2019, 2021). However, the small sample size (n = 12) limited the conclusions we could draw from the pilot. It was predominantly due to participants being required to have a formal HAND diagnosis, which is difficult to conclude (Eaton et al., in press; Ramirez-Garcia et al., 2019). That, by itself, limited our sampling frame to 40 individuals. Additionally, the onset of the COVID-19 pandemic at the time paused all in-person group therapy initiatives. The pandemic’s continuation suggests that group therapies may have to be delivered exclusively online, or using a hybrid model, for the foreseeable future. This proposal will determine how to adapt this promising intervention for an online or hybrid mode of delivery.

The in-person version of CRGT consists of nine three-hour sessions delivered once per week (Eaton et al., 2019; 2021). An initial three-hour group orientation session involves intervention goal setting, participant and facilitator introductions, establishing group norms and guidelines, principles of mindfulness-based stress reduction (MBSR) and brain training activities (BTA)—including how they will be combined—and setting participants up with BTA software. Eight weekly intervention sessions then occur, each comprised of: (a) 2 hours of MBSR to teach meditation, body scans, deep breathing, and other exercises to relieve stress; and (b) 1 hour of BTA, consisting of discussion on training progress and challenges, alongside time for individual practice (Eaton et al., 2019, 2021).

MBSR follows a published curriculum of mindfulness and meditation activities both in session and via weekly homework assignments (Kabat-Zinn et al., 2017), that can reduce cognition-related stress (Chouinard et al., 2018) and anxiety (Berk et al., 2017). BTA are games or activities that can be completed on paper or available as software (e.g., PositScience by BrainHQ), that when practiced for >2 hours per week for >8 weeks can improve cognition-related coping (Vance et al., 2018) The pilot RCT of CRGT was the first known instance of BTA offered in a group setting, and the peer facilitators used a participatory approach to structure sessions as a mix of individual practice and group discussion on training progress and challenges (Eaton et al., 2019, 2021). This approach will be manualized with adaptations emerging from this study, as part of this study.

Methods

This study will utilize a co-design framework for adapting psychosocial interventions for online delivery (Banbury et al., 2021; Bevan Jones et al., 2020; Yeates et al., 2022). Co-design is one method of community-based participatory research that actively involves and centres the input of participants at each stage of intervention development, from defining key issues and developing solutions to delivering and evaluating services (Elbers et al., 2021; Thabrew et al., 2018). Importantly, this approach extends beyond simply soliciting participants’ feedback about an intervention or gauging participants’ responses to an intervention, because it “involves jointly exploring and articulating needs and jointly exploring and making solutions” (Thabrew et al., 2018, p. 1). In recent years, researchers have increasingly implemented co-design studies to develop psychosocial and health care interventions (Boyd et al., 2012; Elbers et al., 2021), particularly interventions delivered through digital or mobile platforms (Bevan Jones et al., 2020; Thabrew et al., 2018; Verbiest et al., 2019; Yeates et al., 2022).

To guide to our co-design approach, the proposed study will adopt a “Double Diamond” model of design (Figure 1) (Banbury et al., 2021; Design Council, 2019). This model consists of four phases: (1) Discover, (2) Define, (3) Develop, and (4) Deliver. Each phase may be categorized as diverging (exploring ideas and brainstorming options) or converging (taking focused action to implement ideas and prototypes) (Design Council, 2019; Elbers et al., 2021).

Figure 1.

Double diamond adaptation model.

The first phase of the model, Discover (diverging), involves exploring problems and generating ideas by spending time with participants to understand their needs and perspectives (Banbury et al., 2021; Elbers et al., 2021). In this protocol, the initial phase will consist of two different forms of data collection: (a) a 15-minute survey questionnaire administered online via Qualtrics (Supplementary file 1); and (b) a 2-hour, semi-structured, peer-led focus group that will take place over Zoom (Supplementary file 2). The aim will be to gain a deeper understanding of participants’ needs regarding an online or hybrid adaptation of cognitive remediation group therapy (CRGT). For example, participants will be asked for their overall thoughts on how CRGT could support their cognitive health, including their opinions on the content and length of each session.

The second phase, Define (converging), typically involves defining and refining problems, as well as creating a framework for understanding the problems that emerged in phase one (Banbury et al., 2021). In this study, the second phase will occur through the transcription and analysis of data that was collected in the first phase. A team comprised of people aging with HIV, service providers, and researchers will take a participatory approach to content analysis in order to identify recurrent themes in the data.

The third phase, Develop (diverging), consists of creating, exploring, and testing solutions (Banbury et al., 2021). In our study, the third phase will employ: (a) member-checking with participants, with the aim of gathering feedback about the results of the study; and (b) partnership development, whereby sites (such as community-based HIV organizations) will be asked to host and co-host the intervention in a clinical trial. During this stage, participants will have the option of reviewing our draft findings (qualitative themes and adaptation plan) – either through web conference or e-mail (depending on the participants’ choice) – and sites will have the opportunity to provide input on the intervention plan.

The fourth and final phase, Deliver (converging), involves implementing and evaluating the intervention that was refined in the Develop phase. Implementation of the intervention could include discarding parts that do not work and improving on parts that are effective (Banbury et al., 2021). Within the proposed study, the last phase will deliver a trial of the adapted CRGT intervention to people aging with HIV and cognitive concerns in Ontario and Saskatchewan.

Recruitment

Individuals will be eligible to participate if they self-identify as HIV-positive, are over age 40, have concerns about their cognitive health, and reside in Ontario or Saskatchewan. Forty participants – ideally 20 from each province – will attend one of 5–6 online focus groups (each comprising 4–6 participants); this sample size has been used in extant research to co-design intervention adaptations (Yeates et al., 2022). Participants will be recruited using purposive sampling, as this method optimizes the recruitment of “respondents that are most likely to yield appropriate and useful information” in qualitative studies (Kelly, 2010, p. 317). Purposive sampling therefore strives to increase the depth—as opposed to the breadth—of understanding about a given topic, and operates from the assumption that specific individuals should be included in the sample because they hold differing and important views about the issue at hand (Campbell et al., 2020). Members of the research team will recruit via their professional networks and within their organizations. Peer researchers will conduct community outreach at relevant community meetings and events. We will also promote the study via our partners’ websites and social media, and conduct additional outreach to other gerontological and HIV organizations in Ontario and Saskatchewan.

Data Collection

Data collection will consist of focus groups—preceded by a brief survey questionnaire— conducted with people aging with HIV in Ontario and Saskatchewan. The groups will have discussions regarding CRGT, how it could be adapted to an online or hybrid format, and related topics regarding HIV, aging, and cognition. The proposed study employs a community-based participatory research (CBPR) framework: peer researchers (i.e., people aging with HIV and with concerns about cognition) will be hired and trained using our team’s curriculum for peer researchers engaged in community-based participatory HIV research, which involves synchronous and asynchronous activities to prepare for research engagement (Eaton et al., 2018; Santorelli et al., 2017). Peers will subsequently assist with recruitment, co-facilitate the focus groups, contribute to analysis, co-author knowledge mobilization outputs, and join the team to prepare the proposal for an efficacy RCT. Peer researchers thus play a central role in our study, underscoring CBPR’s commitment to (1) collaborative, equitable partnerships and (2) co-learning and building capacity among all partners (Wallerstein et al., 2005).

Data collection will involve two primary methods: (1) a 15-minute survey questionnaire administered online via Qualtrics (Supplementary file 1), and (2) a 2-hour, semi-structured focus group that will take place over Zoom (Supplementary file 2). The survey questionnaire will be presented at an initial Zoom meeting with the first author, in which the participants may ask questions about the study, review the consent form, provide oral consent, and complete the online survey questionnaire. During this meeting, participants may also schedule their participation in a focus group. This survey is designed to gather information about participant demographics and cognitive health. Note that surveys have been designed to use wording that is accessible to individuals of Grade 4–5 reading level, as assessed using byreadable.com (an online readability evaluation software).

The focus group guide will begin with a description of the present study and a presentation on cognitive remediation group therapy (CRGT), including the results of the 2019 in-person pilot RCT. We decided to utilize a focus group guide because this qualitative methodology enables “favorable environmental conditions for spontaneous expression and interaction between the participants, encouraging people to share ideas, beliefs, experiences, or opinions during guided discussions” (Irazoki et al., 2021, p. 3), and it has been widely used to elicit feedback, opinions, and user experience among participants with cognitive impairment (e.g., Contreras-Somoza et al., 2022; Irazoki et al., 2021; Stephan et al., 2018; Vance et al., 2017). When the focus group commences, the facilitators will make a presentation of CRGT and its in-person RCT in 2019. The first section of questions will seek participant input on CRGT’s current components – an 8-session weekly 3-hour intervention consisting of 2 hours of mindfulness-based stress reduction and 1 hour of brain training activities (Eaton et al., 2019, 2021) – and query how these components could be modified for an online or hybrid intervention, and which components may be preferably synchronous or asynchronous. Participants will also be asked for their preferred sites to access CRGT (in the case of a hybrid model) and where they would most likely find recruitment information for CRGT. The second section will address participants’ cognitive health, including their current concerns, any medical or community support sought, compensatory strategies they have already attempted, and their interpersonal experiences discussing brain health (including possible instances of stigma). Following a break where focus group facilitators will check in on participants’ well-being, a third section will address cognitive screening considerations for an efficacy trial of CRGT. Based on our team’s experience piloting the in-person CRGT RCT and our combined years of research and practice, we have identified that a clinical diagnosis of HIV-associated neurocognitive disorder (HAND) may be a barrier to participation in CRGT. As such, a brief screen of cognition may be a more suitable entry condition with the option of referral to HAND testing upon completion of the intervention (Eaton et al., in press). Exploring the receptivity of this proposed process by people aging with HIV and cognitive concerns in focus groups will be important to determining a suitable, community-driven study design for the efficacy RCT.

Data Analysis

Each focus group will be audio-recorded and transcribed verbatim. The analysis team (people aging with HIV, service providers, and researchers) will then employ a participatory approach to content analysis (Bengtsson, 2016). Each team member will carefully read and review the transcripts to extract and organize quotes into a spreadsheet; quotes reflecting similar concepts or themes will be grouped together. Independent coding of the data will permit individual conceptualizations of participants’ preferences for an adapted CRGT and an efficacy RCT, while team meetings will subsequently take place to discuss convergence and divergence of identified themes, with the goal of achieving consensus regarding concepts and themes to include in an adapted intervention plan and RCT proposal (Grubin et al., 2022). All coding will be informed by the Consolidated Standards of Reporting Trials (CONSORT) checklist for reporting necessary components of an RCT, as we intend to define, develop, and deliver a clinical trial of the adapted CRGT intervention (Schulz et al., 2010). Prior to disseminating the results, we will conduct member-checking to discuss findings with participants via web conference or e-mail.

Ethics

This study poses minimal risks to participants, that the research team will strive to mitigate. Cognitive impairment and HIV/AIDS can be sensitive topics that together present a unique form of dual stigma and there is a possibility that participants may experience distress as a result (Eaton et al., 2021). The initial survey meeting is designed as an opportunity to thoroughly discuss the study’s consent form and upcoming focus group with each participant individually. Further, if participants indicate feeling distressed after any study meeting, the research team will provide local resources for additional support (Valdez & Gubrium, 2020).

Other ethical issues may emerge from the use of online platforms (e.g., Zoom, Qualtrics) for data collection and storage, thus this study will implement measures to ensure participants’ confidentiality and data security. When using Zoom for focus groups, recordings will be saved locally to the principal investigator’s computer – not to the cloud. Only the principal investigator will have access to the Zoom recordings; they will be deleted once the focus groups have been transcribed in a de-identified manner. When using Qualtrics online survey software for the brief questionnaire, participants will be assigned a unique identifier so that they do not have to provide identifiable information such as their names. Further, the online database of survey responses will be deleted once the survey is closed and responses have been downloaded to the principal investigator’s computer.

Co-design models strive for equity in research, yet a power dynamic inherent in conducting research with and for a marginalized population—in this case, people aging with HIV and cognitive concerns—remains (Eaton, 2021). The research team is comprised of members who possess extensive experience living as, researching with, and/or caring for people aging with HIV and related cognitive challenges. As such, the proposed study takes steps to centre the well-being, input, and lived experiences of people aging with HIV. They will be collaboratively involved throughout the entire research process, from recruiting participants to member-checking the final results and manuscript.

Rigor

To establish and maintain qualitative rigor, the proposed study draws from Guba and Lincoln’s seminal model for “trustworthiness” in qualitative research, which identifies four evaluative criteria: (1) credibility, or internal validity; (2) transferability, or generalizability; (3) dependability, or reliability; and (4) confirmability, or objectivity (Guba & Lincoln, 1985).

Additionally, this study will use member-checking to ascertain credibility (Thomas & Magilvy, 2011). Participants will have the option of reviewing our draft findings (qualitative themes and adaptation plan) before dissemination and providing feedback, either through web conference or e-mail (according to the participants’ choice). Transferability will be established by providing detailed information about the sample being studied, for example, by elucidating the demographic and geographic boundaries of the study (Thomas & Magilvy, 2011). In writing thick descriptions of the study sample and context, this protocol lays essential groundwork for future researchers to transfer our findings to a different sample or context (Morse, 2015). Purposive sampling further enhances this study’s transferability, as such detailed inclusion criteria enables a full, contextual picture of the sample (Campbell et al., 2020). Meanwhile, dependability will be achieved through an “audit trail,” which involves detailed description of the purpose, methods, and findings of the study; this includes the present protocol (Thomas & Magilvy, 2011). The audit trail will also serve to establish confirmability, as an “audit trail offers visible evidence—from process and product—that the researcher did not simply find what [they] set out to find” (Bowen, 2009, p. 307).

Conclusion

This study protocol describes the use of the “Double Diamond” co-design framework to adapt a psychosocial Cognitive Remediation Group Therapy (CRGT) intervention for people aging with HIV and cognitive concerns to an online or hybrid format. Aspects of this protocol may be pertinent to other community-academic teams involved in developing, adapting, scaling, and implementing therapeutic strategies for comorbid, complex health conditions.

Supplemental Material

Supplemental Material - Adapting Cognitive Remediation Group Therapy as an Online or Hybrid Intervention for People Aging With HIV and Cognitive Concerns: Focus Group Protocol

Supplementary Material for Adapting Cognitive Remediation Group Therapy as an Online or Hybrid Intervention for People Aging With HIV and Cognitive Concerns: Focus Group Protocol by Andrew D. Eaton, Jenny Hui, Marvelous Muchenje, Kate Murzin, Soo Chan Carusone, Francisco Ibáñez-Carrasco, Nuelle Novik, John W. McCullagh, Susanne Nicolay, and Sharon L. Walmsley in International Journal of Qualitative Methods.

Footnotes

Acknowledgments

Thank you to Lauren Verwolf for figure design and Maria Staszkiewicz for formatting assistance.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SLW is an Ontario HIV Treatment Network (OHTN) Research Chair.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is supported by a Planning and Dissemination Grant from the Canadian Institutes of Health Research (CIHR) via grant number 478015 and by a Pilot Study Grant from the CIHR Canadian HIV Trials Network (CTN) via grant number PT029.

ORCID iD

Andrew D. Eaton

Supplemental Material

Supplemental material for this article is available online.

References

Ahn

M. Y.

Jiamsakul

Khusuwan

Khol

Pham

T. T.

Chaiwarith

Avihingsanon

Kumarasamy

Wong

W. W.

Kiertiburanakul

Pujari

Nguyen

K. V.

Lee

M. P.

Kamarulzaman

Zhang

Ditangco

Merati

T. P.

Yunihastuti

O. T.

Choi

J. Y.

(2019). The influence of age-associated comorbidities on responses to combination antiretroviral therapy in older people living with HIV. Journal of the International AIDS Society, 22(2), Article e25228. https://doi.org/10.1002/jia2.25228

Alford

Vera

J. H.

(2018). Cognitive impairment in people living with HIV in the ART era: A review. British Medical Bulletin, 127(1), 55–68. https://doi.org/10.1093/bmb/ldy019

Allavena

Hanf

Rey

Duvivier

BaniSadr

Poizot-Martin

Jacomet

Pugliese

Delobel

Katlama

Joly

Chidiac

Dournon

Merrien

May

Reynes

Gagneux-Brunon

Chirouze

Huleux

The Dat’AIDS study group . (2018). Antiretroviral exposure and comorbidities in an aging HIV-infected population: The challenge of geriatric patients. Plos One, 13(9), Article e0203895. https://doi.org/10.1371/journal.pone.0203895

Banbury

Pedell

Parkinson

Byrne

(2021). Using the double diamond model to co-design a dementia caregivers telehealth peer support program. Journal of Telemedicine and Telecare, 27(10), 667–673. https://doi.org/10.1177/1357633X211048980

Bengtsson

(2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8-14. https://doi.org/10.1016/j.npls.2016.01.001.

Berk

Hotterbeekx

van Os

van Boxtel

(2017). Mindfulness-based stress reduction in middle-aged and older adults with memory complaints: A mixed-methods study. Aging and Mental Health, 22(8), 1113–1120. https://doi.org/10.1080/13607863.2017.1347142

Bevan Jones

Stallard

Agha

S. S.

Rice

Werner‐Seidler

Stasiak

Kahn

Simpson

S. A.

Alvarez Jimenez

Rice

Evans

Merry

(2020). Practitioner review: Co design of digital mental health technologies with children and young people. Journal of Child Psychology and Psychiatry, 61(8), 928–940. https://doi.org/10.1111/jcpp.13258

Bourgeois

A. C.

Edmunds

Awan

Jonah

Varsaneux

Siu

(2017). HIV in Canada—Surveillance report, 2016. Canada Communicable Disease Report, 43(12), 248–256. https://doi.org/10.14745/ccdr.v43i12a01

Bowen

G. A.

(2009). Supporting a grounded theory with an audit trail: An illustration. International Journal of Social Research Methodology: Theory & Practice, 12(4), 305–316. https://doi.org/10.1080/13645570802156196

10.

Boyd

McKernon

Mullin

Old

(2012). Improving healthcare through the use of co-design. The New Zealand Medical Journal, 125(1357), 76-87. 22854362.

11.

Campbell

Greenwood

Prior

Shearer

Walkem

Young

Bywaters

Walker

(2020). Purposive sampling: Complex or simple? Research case examples. Journal of Research in Nursing: JRN, 25(8), 652–661. https://doi.org/10.1177/1744987120927206

12.

Chouinard

Larouche

Audet

Hudon

Goulet

(2018). Mindfulness and psychoeducation to manage stress in amnestic mild cognitive impairment: A pilot study. Aging & Mental Health, 23(9), 1246–1254. https://doi.org/10.1080/13607863.2018.1484890

13.

Contreras-Somoza

L. M.

Toribio-Guzmán

J. M.

Sánchez-Gómez

M. C.

Irazoki

Martín-Cilleros

M. V.

Verdugo-Castro

Parra-Vidales

Perea-Bartolomé

M. V.

Franco-Martín

M. Á.

(2022). Perceptions of older people with cognitive impairment, caregivers, and professionals about ehcoBUTLER (tablet health care platform): A qualitative focus group study. International Journal of Environmental Research and Public Health, 19(11), 6761. https://doi.org/10.3390/ijerph19116761

14.

Design Council (2019, May 17). Framework for innovation: Design council’s evolved Double Diamond. https://www.designcouncil.org.uk/our-work/skills-learning/tools-frameworks/framework-for-innovation-design-councils-evolved-double-diamond/

15.

Eaton

A. D.

(2021). Community engagement in Canadian health and social science research: Field reports on four studies. Engaged Scholar Journal: Community-Engaged Research, Teaching and Learning, 6(2), 118–134. https://doi.org/10.15402/esj.v6i2.70165

16.

Eaton

A. D.

Chan Carusone

Murzin

Hui

McCullagh

J. W.

Walmsley

S. L.

(in press). Cognitive screening considerations for psychosocial clinical trials on HIV, aging, and cognition. Clinical Trials.

17.

Eaton

A. D.

Craig

S. L.

Rourke

S. B.

Sota

McCullagh

J. W.

Fallon

B. A.

Walmsley

S. L.

(2021). Cognitive remediation group therapy compared to mutual aid group therapy for people aging with HIV-associated neurocognitive disorder: Randomized, controlled trial. Social Work with Groups, 45(2), 116–131. https://doi.org/10.1080/01609513.2021.1963389

18.

Eaton

A. D.

Ibáñez-Carrasco

Craig

S. L.

Chan Carusone

Montess

Wells

G. A.

Ginocchio

G. F.

(2018). A blended learning curriculum for training peer researchers to conduct community-based participatory research. Action Learning: Research and Practice, 15(2), 139–150. https://doi.org/10.1080/14767333.2018.1462143

19.

Eaton

A. D.

Walmsley

S. L.

Craig

S. L.

Rourke

S. B.

Sota

McCullagh

J. W.

Fallon

B. A.

(2019). Protocol for a pilot randomised controlled trial evaluating feasibility and acceptability of cognitive remediation group therapy compared with mutual aid group therapy for people ageing with HIV-associated neurocognitive disorder (HAND) in Toronto, Canada. BMJ Open, 9(10), Article e033183. https://doi.org/10.1136/bmjopen-2019-033183

20.

Elbers

van Gessel

Renes

R. J.

van der Lugt

Wittink

Hermsen

(2021). Innovation in pain rehabilitation using co-design methods during the development of a relapse prevention intervention: Case study. Journal of Medical Internet Research, 23(1), Article e18462. https://doi.org/10.2196/18462

21.

Evans

Martyr

Collins

Brayne

Clare

(2019). Social isolation and cognitive function in later life: A systematic review and meta-analysis. Journal of Alzheimer’s Disease: JAD, 70(s1), S119–S144. https://doi.org/10.3233/JAD-180501

22.

Gao

Meng

Xiao

Wang

Williams

A. B.

Wang

(2020). Antiretroviral therapy improves neurocognitive impairment in people living with HIV? A meta-analysis. International Journal of Nursing Sciences, 7(2), 238–247. https://doi.org/10.1016/j.ijnss.2020.03.007

23.

Greene

Covinsky

K. E.

Valcour

Miao

Madamba

Lampiris

Cenzer

I. S.

Martin

Deeks

S. G.

(2015). Geriatric syndromes in older HIV-infected adults. Journal of Acquired Immune Deficiency Syndromes, 69(2), 161–167. https://doi.org/10.1097/QAI.0000000000000556

24.

Grubin

Maudrie

T. L.

Neuner

Conrad

Waugh

Barlow

Coser

Hill

Pioche

Haroz

E. E.

O’Keefe

V. M.

(2022). Development and cultural adaptation of psychological first aid for COVID-19 frontline workers in American Indian/Alaska Native communities. Journal of Prevention, 43(49), 697–717. https://doi.org/10.1007/s10935-022-00695-y

25.

Guba

E. G.

Lincoln

Y. S.

(1985). Naturalistic inquiry. SAGE Publishing.

26.

Illa

Echenique

Bustamante-Avellaneda

Sanchez-Martinez

(2014). Review of recent behavioral interventions targeting older adults living with HIV/AIDS. Current HIV/AIDS Reports, 11(4), 413–422. https://doi.org/10.1007/s11904-014-0231-y

27.

Irazoki

Sánchez-Gómez

M. C.

Contreras-Somoza

L. M.

Toribio-Guzmán

J. M.

Martín-Cilleros

M. V.

Verdugo-Castro

Jenaro-Río

Franco-Martín

M. A.

(2021). A qualitative study of the cognitive rehabilitation program GRADIOR for people with cognitive impairment: Outcomes of the focus group methodology. Journal of Clinical Medicine, 10(4), 859. https://doi.org/10.3390/jcm10040859

28.

Kabat-Zinn

Blacker

Herbette

Fulwiler

(2017). Mindfulness-based stress reduction (MBSR) authorized curriculum guide. https://lotheijke.com/wp-content/uploads/2020/11/8-week-mbsr-authorized-curriculum-guide-2017.pdf

29.

Kasparian

N. A.

Sadhwani

Sananes

Blumenfeld

Butcher

J. L.

Cassidy

A. R.

Cox

S. M.

Kenowitz

Miller

T. A.

Sanz

J. H.

Wolfe

K. R.

Ilardi

(2022). Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: A site survey from the cardiac neurodevelopmental outcome collaborative. Cardiology in the Young. Advance online publication. https://doi.org/10.1017/S1047951122000579

30.

Kelly

(2010). Qualitative interviewing techniques and styles. In Bourgeault

Dingwall

de Vries

(Eds.), The SAGE handbook of qualitative methods in health research. SAGE Publications. https://doi.org/10.4135/9781446268247.n17

31.

Liboro

R. M.

Ibañez-Carrasco

Rourke

S. B.

Eaton

Medina

Pugh

Rae

Ross

L. E.

Shuper

P. A.

(2018). Barriers to addressing HIV-associated neurocognitive disorder (HAND): Community-based service provider perspectives. Journal of HIV/AIDS & Social Services, 17(3), 209–223. https://doi.org/10.1080/15381501.2018.1431168

32.

Liboro

R. M.

Rourke

S. B.

Ibañez-Carrasco

Eaton

Pugh

Medina

Rae

Shuper

P. A.

Ross

L. E.

(2019). Strategies employed by community-based service providers to address HIV-associated neurocognitive challenges: A qualitative study. Journal of the International Association of Providers of AIDS Care, 18(8), 2325958218822336. https://doi.org/10.1177/2325958218822336

33.

McMillan

J. M.

Rubin

L. H.

Gill

M. J.

(2020). HIV diagnosed after 50 years of age. CMAJ: Canadian Medical Association Journal, 192(10), E255. https://doi.org/10.1503/cmaj.191677

34.

Morse

J. M.

(2015). Critical analysis of strategies for determining rigor in qualitative inquiry. Qualitative Health Research, 25(9), 1212–1222. https://doi.org/10.1177/1049732315588501

35.

Ontario HIV Epidemiology and Surveillance Initiative . (2018, February). HIV care cascade in Ontario by sex, age and health region: Linkage to care, in care, on antiretroviral treatment, and virally suppressed, 2015. https://www.ohesi.ca/wp-content/uploads/2022/01/HIV-care-cascade-age-sex-health-region.pdf

36.

Public Health Agency of Canada (2021, December 1). HIV in Canada: 2020 surveillance highlights. Government of Canada. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/hiv-2020-surveillance-highlights.html.

37.

Ramirez-Garcia

M. P.

Gagnon

M. P.

Colson

Côté

Flores-Aranda

Dupont

(2019). Mind-body practices for people living with HIV: A systematic scoping review. BMC Complementary and Alternative Medicine, 19(1), 125. https://doi.org/10.1186/s12906-019-2502-z

38.

Santorelli

S. F.

Meleo-Meyer

Koerbel

Kabat-Zinn

(2017). Mindfulness-based stress reduction (MBSR) authorized curriculum guide, 2017. Center for mindfulness in medicine, health care, and Society. https://lotheijke.com/wp-content/uploads/2020/11/8-week-mbsr-authorized-curriculum-guide-2017.pdf

39.

Saskatchewan Ministry of Health . (2018). HIV prevention and control report, 2018. Saskatchewan Publication Centre. https://publications.saskatchewan.ca/api/v1/products/64628/formats/131502/download

40.

Schulz

K. F.

Altman

D. G.

Moher

D. CONSORT Group.

(2010). CONSORT 2010 statement: Updated guidelines for reporting parallel group randomised trials. BMJ, 340, Article c332. https://doi.org/10.1136/bmj.c332

41.

Stephan

Bieber

Hopper

Joyce

Irving

Zanetti

Portolani

Kerpershoek

Verhey

de Vugt

Wolfs

Eriksen

Røsvik

Marques

M. J.

Gonçalves-Pereira

Sjölund

B. M.

Jelley

Woods

Meyer

Actifcare Consortium . (2018). Barriers and facilitators to the access to and use of formal dementia care: Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics, 18(1), 131. https://doi.org/10.1186/s12877-018-0816-1

42.

Tedaldi

E. M.

Minniti

N. L.

Fischer

(2015). HIV-associated neurocognitive disorders: The relationship of HIV infection with physical and social comorbidities. BioMed Research International, 2015(3), 641913. https://doi.org/10.1155/2015/641913

43.

Thabrew

Fleming

Hetrick

Merry

(2018). Co-design of eHealth interventions with children and young people. Frontiers in Psychiatry, 9(481), 1-6. https://doi.org/10.3389/fpsyt.2018.00481.

44.

Thomas

Magilvy

J. K.

(2011). Qualitative rigor or research validity in qualitative research. Journal for Specialists in Pediatric Nursing, 16(2), 151–155. https://doi.org/10.1111/j.1744-6155.2011.00283.x

45.

Valdez

E. S.

Gubrium

(2020). Shifting to virtual CBPR protocols in the time of Corona Virus/COVID-19. International Journal of Qualitative Methods, 19, 160940692097731. https://doi.org/10.1177/1609406920977315.

46.

Vance

D. E.

Gakumo

C. A.

Childs

G. D.

Enah

Fazeli

P. L.

(2017). Feedback on a multimodal cognitive intervention for adults aging with HIV: A focus group study. Journal of the Association of Nurses in AIDS Care, 28(5), 685–697. https://doi.org/10.1016/j.jana.2017.06.002

47.

Vance

D. E.

Jensen

M. B. S.

Tende

Raper

J. L.

Morrison

Fazeli

P. L.

(2018). Individualized-targeted computerized cognitive training to treat HIV-associated neurocognitive disorder: An interim descriptive analysis. Journal of the Association of Nurses in AIDS Care, 29(4), 604–611. https://doi.org/10.1016/j.jana.2018.04.005

48.

Verbiest

Corrigan

Dalhousie

Firestone

Funaki

Goodwin

Grey

Henry

Humphrey

Jull

Vano

Pekepo

Morenga

L. T.

Whittaker

Mhurchu

C. N.

(2019). Using codesign to develop a culturally tailored, behavior change mHealth intervention for indigenous and other priority communities: A case study in New Zealand. Translational Behavioral Medicine, 9(4), 720–736. https://doi.org/10.1093/tbm/iby093

49.

Wallerstein

Duran

Minkler

Foley

(2005). Developing and maintaining partnerships with communities. In Israel

B. A.

Eng

Schulz

A. J.

Parker

E. A.

(Eds.), Methods in community-based participatory research for health (pp. 31–51). Jossey-Bass.

50.

Wandeler

Johnson

L. F.

Egger

(2016). Trends in life expectancy of HIV-positive adults on antiretroviral therapy across the globe: Comparisons with general population. Current Opinion in HIV and AIDS, 11(5), 492–500. https://doi.org/10.1097/COH.0000000000000298

51.

Watkins

C. C.

Treisman

G. J.

(2015). Cognitive impairment in patients with AIDS - prevalence and severity. HIV/AIDS, 7, 35-47. https://doi.org/10.2147/HIV.S39665.

52.

Zhu

(2022). Online psychosocial interventions for improving mental health in people during the COVID-19 pandemic: A systematic review and meta-analysis. Journal of Affective Disorders, 316, 120-131. https://doi.org/10.1016/j.jad.2022.08.023.

53.

Yeates

Gardner

van den Heuvel

Fleming

Semsarian

McEwen

Adlard

Ingles

(2022). Using codesign focus groups to develop an online COmmunity suPporting familiEs after Sudden Cardiac Death (COPE-SCD) in the young. BMJ Open, 12(8), Article e053785. https://doi.org/10.1136/bmjopen-2021-053785