Engaging Older Adults With Cancer and Their Caregivers to Set Research Priorities Through Cancer and Aging Research Discussion Sessions

Haase, Kristen; Tompson, Margaret; Hall, Steven; Sattar, Schroder; Ahmed, Shahid

doi:10.1188/21.onf.613-622

Cited by 8 publications

(4 citation statements)

References 39 publications

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“…Out of the 66 PPI articles, 16 originated in the United Kingdom, 31–46 14 in the United States, 47–60 12 in Australia, 61–72 7 in Canada, 73–79 2 in China, 80,81 and 1 in Japan 82 . European countries included: Switzerland ( n = 2), 83,84 The Netherlands ( n = 2), 85,86 and Spain ( n = 1), 87 as well as two studies comprising several countries ( n = 2) 88,89 .…”

Section: Resultsmentioning

confidence: 99%

“…Most of the studies (17/66) did not specify the type of cancer of patients involved or included multiple types (9/66). Regarding the PPI target population, 4/66 included adolescents or young adults (AYAs) 41,44,68,94 and the rest consisted in adult population, of which 5/62 studies included parents of pediatric patients, 40,53,79,95,96 2/62 older adults, 32,76 and 1 study included patients with intellectual disability 90 (Table S3). People previously diagnosed with cancer not currently undergoing treatment, including survivors, were the most frequent type of PPI participants (39/66), followed by relatives or informal caregivers (36/66).…”

Section: Resultsmentioning

confidence: 99%

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Patient and public involvement in cancer research: A scoping review

Colomer‐Lahiguera,

Steimer,

Ellis

et al. 2023

Cancer Medicine

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IntroductionPatient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.MethodsWe searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full‐text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.ResultsWe screened 22,009 titles/abstract, reviewed 375 full‐text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co‐design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.ConclusionsResults of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.Patient or Public ContributionTwo patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co‐authors of this manuscript.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Patient and public involvement in cancer research: A scoping review

Colomer‐Lahiguera,

Steimer,

Ellis

et al. 2023

Cancer Medicine

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“…Caregivers to older adults have previously iterated they have an interest in research engagement (Haase et al, 2021;. Researchers should capitalize on this interest by co-creating solutions to improve the caregiver experience.…”

Section: Study Implicationsmentioning

confidence: 99%

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study

Hall,

Rohatinsky,

Holtslander

et al. 2024

Can J Nurs Res

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Background Policies and services for older adults are increasingly focused on living in the community, rather than relying on institutions. A total of 70–80% of community care for older adults is provided by family and friend caregivers. With Canada's aging population, the number of caregivers to older adults is growing. Purpose The purpose of this paper is to describe the research methodology that was employed in the Saskatchewan Caregiver Experience Study. The methodology was used to map the experiences and gather perspectives of caregivers in Saskatchewan and to identify their priority support needs. Methods Qualitative description was the approach in this study. An online qualitative survey was administered via SurveyMonkey and distributed via Facebook and community newsletters. The survey collected caregiver demographics and asked three open-ended questions regarding: (1) the challenges that caregivers experience; (2) the positive aspects of caregiving; and (3) the support needs and priorities of Saskatchewan caregivers. A fourth question where caregivers could freely express any other experiences or perspectives was included. Content analysis was the method used for data analysis. Results 355 individuals met the inclusion criteria for this study. Participants were evenly distributed amongst urban-large, urban-small/medium, and rural settings in Saskatchewan. The average age of caregivers and care recipients were 61 and 83 respectively. Conclusion This study has implications for research, practice, and policy. By gathering the full spectrum of the caregiver experience in Saskatchewan, this study can help to inform how communities, governments, and our healthcare system can best support caregivers in their role.

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“…In our prior work with older adults, they described both the complex work of cancer self-management and a dearth of supports to manage the complex interplay of their cancer diagnosis with other illnesses [ 18 , 19 ]. Therefore, the purpose of this study was to address this critical gap, by reporting on the user evaluations of the design of a self-management app to support older adults living with cancer and multimorbidity.…”

Section: Introductionmentioning

confidence: 99%

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

Sien,

Kobekyaa,

Puts

et al. 2024

JMIR Aging

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Background Globally, cancer predominates in adults aged older than 60 years, and 70% of older adults have ≥1 chronic condition. Cancer self-management interventions can improve symptom management and confidence, but few interventions target the complex needs of older adults with cancer and multimorbidity. Despite growing evidence of digital health tools in cancer care, there is a paucity of theoretically grounded digital self-management supports for older adults. Many apps for older adults have not been co-designed with older adults to ensure that they are tailored to their specific needs, which would increase usability and uptake. Objective We aim to report on the user evaluations of a self- and symptom-management app to support older adults living with cancer and multimorbidity. Methods This study used Grey’s self-management framework, a design thinking approach, and involved older adults with lived experiences of cancer to design a medium-fidelity app prototype. Older adults with cancer or caregivers were recruited through community organizations or support groups to participate in co-designing or evaluations of the app. Data from interviews were iteratively integrated into the design process and analyzed using descriptive statistics and thematic analyses. Results In total, 15 older adults and 3 caregivers (n=18) participated in this study: 10 participated (8 older adults and 2 caregivers) in the design of the low-fidelity prototype, and 10 evaluated (9 older adults and 1 caregiver) the medium-fidelity prototype (2 older adults participated in both phases). Participants emphasized the importance of tracking functions to make sense of information across physical symptoms and psychosocial aspects; a clear display; and the organization of notes and reminders to communicate with care providers. Participants also emphasized the importance of medication initiation or cessation reminders to mitigate concerns related to polypharmacy. Conclusions This app has the potential to support the complex health care needs of older adults with cancer, creating a “home base” for symptom management and support. The findings from this study will position the researchers to conduct feasibility testing and real-world implementation.

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Engaging Older Adults With Cancer and Their Caregivers to Set Research Priorities Through Cancer and Aging Research Discussion Sessions

Cited by 8 publications

References 39 publications

Patient and public involvement in cancer research: A scoping review

Patient and public involvement in cancer research: A scoping review

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing

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