Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners’ preparedness for the visit and opening a direct channel to express concerns about patients’ cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes’ and potential for future implementation and dissemination.
ATLAS.ti Scientific Software Development GmbH ATLAS.ti Web [Qualitative data analysis software]. (5.16.0.). (2023). [Computer software]. https://atlasti.com
7.
BoltonR.LoganC.GittellJ. H. (2021). Revisiting relational coordination: A systematic review. The Journal of Applied Behavioral Science, 57(3), 290–322. https://doi.org/10.1177/0021886321991597
8.
BurgdorfJ. G.FabiusC. D.WolffJ. L. (2023). Use of provider-sponsored patient portals among older adults and their family caregivers. Journal of the American Geriatrics Society, 71(4), 1177–1187. https://doi.org/10.1111/jgs.18187
9.
ClarkeV.BraunV. (2012). Thematic analysis. In CooperH.CamicP. M.LongD. L.PanterA. T.RindskopfD.SherK. J. (Eds.), APA handbook of research methods in psychology, Vol. 2. Research Designs: Quantitative, Qualitative, Neuropsychological, and Biological (Vol. 2, pp. 1947–1952). American Psychological Association. https://doi.org/10.1007/978-1-4614-5583-7_311
CzajaS. J.BootW. R.CharnessN.RogersW. A. (2019). Designing for older adults: Principles and creative human factors approaches. CRC Press.
12.
De JongC. C.RosW. J.Van LeeuwenM.SchrijversG. (2016). How professionals share an E-care plan for the elderly in primary care: Evaluating the use of an e-communication tool by different combinations of professionals. Journal of Medical Internet Research, 18(11), Article e304. https://doi.org/10.2196/jmir.6332
13.
ErnecoffN. C.WessellK. L.GabrielS.CareyT. S.HansonL. C. (2018). A Novel screening method to identify late-stage dementia patients for palliative care research and practice. Journal of Pain and Symptom Management, 55(4), 1152–1158.e1. https://doi.org/10.1016/j.jpainsymman.2017.12.480
GleasonK. T.PeereboomD.WecA.WolffJ. L. (2022). Patient portals to support care partner engagement in adolescent and adult populations: A scoping review. JAMA Network Open, 5(12), Article e2248696. https://doi.org/10.1001/jamanetworkopen.2022.48696
16.
GleasonK. T.WuM. M. J.WecA.PowellD. S.ZhangT.GamperM. J.GreenA. R.NothelleS.AmjadH.WolffJ. L. (2023). Use of the patient portal among older adults with diagnosed dementia and their care partners. Alzheimer’s & Dementia. alz.13354.https://doi.org/10.1002/alz.13354
17.
GriffinJ. M.RiffinC.BangerterL. R.SchaepeK.HavyerR. D. (2022). Provider perspectives on integrating family caregivers into patient care encounters. Health Services Research, 57(4), 892–904. https://doi.org/10.1111/1475-6773.13932
18.
HarrisP. A.TaylorR.ThielkeR.PayneJ.GonzalezN.CondeJ. G. (2009). Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010
19.
HodgesV.HynesC.LassaS.MitchellC. (2021). Support needs of carers making proxy healthcare decisions for people with dementia: A systematic review based on the Noblit and Hare meta-ethnographic synthesis of qualitative studies. BMJ Open, 11(12), Article e052608. https://doi.org/10.1136/bmjopen-2021-052608
20.
KasperJ. D.FreedmanV. A.SpillmanB. C.WolffJ. L. (2015). The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Affairs, 34(10), 1642–1649. https://doi.org/10.1377/hlthaff.2015.0536
21.
LatulipeC.QuandtS. A.MeliusK. A.BertoniA.MillerD. P.Jr.SmithD.ArcuryT. A. (2018). Insights into older adult patient concerns around the caregiver proxy portal use: Qualitative interview study. Journal of Medical Internet Research, 20(11), Article e10524. https://doi.org/10.2196/10524
LewisJ. R.SauroJ. (2009). The factor structure of the system usability scale. In KurosuM. (Ed.), Human Centered Design (Vol. 5619, pp. 94–103). Springer Berlin Heidelberg. https://doi.org/10.1007/978-3-642-02806-9_12
24.
LincolnY. S.GubaE. G. (1991). Naturalistic inquiry (Nachdr.). Sage.
25.
LuceroR. J.FehlbergE. A.PatelA. G. M.BjarnardottirR. I.WilliamsR.LeeK.AnsellM.BakkenS.LuchsingerJ. A.MittelmanM. (2019). The effects of information and communication technologies on informal caregivers of persons living with dementia: A systematic review. Alzheimer's and Dementia: Translational Research & Clinical Interventions, 5(1), 1–12. https://doi.org/10.1016/j.trci.2018.11.003
26.
NdlovuK.MarsM.ScottR. E. (2021). Interoperability frameworks linking mHealth applications to electronic record systems. BMC Health Services Research, 21(1), 459. https://doi.org/10.1186/s12913-021-06473-6
27.
NortonJ. M.IpA.RuggianoN.AbidogunT.CamaraD. S.FuH.HoseB.-Z.MiranS.HsiaoC.-J.WangJ.BiermanA. S. (2022). Assessing progress toward the vision of a comprehensive, shared electronic care plan: Scoping review. Journal of Medical Internet Research, 24(6), Article e36569. https://doi.org/10.2196/36569
ParmarJ.AndersonS.AbbasiM.AhmadinejadS.ChanK.CharlesL.DobbsB.KheraA. S.Stickney-LeeJ.TianP. G. J.JainS. (2021). Family physician’s and primary care team’s perspectives on supporting family caregivers in primary care networks. International Journal of Environmental Research and Public Health, 18(6), 3293. https://doi.org/10.3390/ijerph18063293
30.
PattonM. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Sage Publications, Inc.
31.
PearsonN.NaylorP. J.AsheM. C.FernandezM.YoongS. L.WolfendenL. (2020). Guidance for conducting feasibility and pilot studies for implementation trials. Pilot and feasibility studies, 6(1), 167. https://doi.org/10.1186/s40814-020-00634-w
32.
ProctorE.SilmereH.RaghavanR.HovmandP.AaronsG.BungerA.GriffeyR.HensleyM.HensleyM. (2011). Outcomes for implementation research: Conceptual distinctions, measurement challenges, and research agenda. Administration and Policy in Mental Health and Mental Health Services Research, 38(2), 65–76. https://doi.org/10.1007/s10488-010-0319-7
33.
RiffinC.GriffinJ. M.BrodyL.WolffJ. L.PillemerK. A.AdelmanR. D.BangerterL. R.StarksS. M.FalzaranoF.Villanigro-SantiagoM.VeneyL.CzajaS. J. (2022a). Engaging and supporting care partners of persons with dementia in health-care delivery: Results from a national consensus conference. The Public policy and aging report, 32(2), 58–65. https://doi.org/10.1093/ppar/prac004
34.
RiffinC.PatrickK.LinS. L.Carrington ReidM.HerrK.PillemerK. A. (2022b). Caregiver–provider communication about pain in persons with dementia. Dementia, 21(1), 270–286. https://doi.org/10.1177/14713012211036868
35.
RiffinC.Van NessP. H.WolffJ. L.FriedT. (2017). Family and other unpaid caregivers and older adults with and without dementia and disability. Journal of the American Geriatrics Society, 65(8), 1821–1828. https://doi.org/10.1111/jgs.14910
36.
RiffinC.WolffJ. L.ButterworthJ.AdelmanR. D.PillemerK. A. (2021a). Challenges and approaches to involving family caregivers in primary care. Patient Education and Counseling, 104(7), 1644–1651. https://doi.org/10.1016/j.pec.2020.11.031
37.
RiffinC.WolffJ. L.PillemerK. A. (2021b). Assessing and addressing family caregivers’ needs and risks in primary care. Journal of the American Geriatrics Society, 69(2), 432–440. https://doi.org/10.1111/jgs.16945
38.
ScharaH.JohnsonT.BrungardtA.MarcusA. M.CassidyJ.ShanbhagP.PlysE.LumH. D. (2022). Living with dementia: Care partner needs and outcomes of a dementia support program in primary care. Gerontology and Geriatric Medicine, 8, Article 233372142211294. https://doi.org/10.1177/23337214221129466
39.
SheehanO. C.HaleyW. E.HowardV. J.HuangJ.RhodesJ. D.RothD. L. (2021). stress, burden, and well-being in dementia and nondementia caregivers: Insights from the caregiving transitions study. The Gerontologist, 61(5), 670–679. https://doi.org/10.1093/geront/gnaa108
40.
SoongA.AuS. T.KyawB. M.ThengY. L.Tudor CarL. (2020). Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: A scoping review. BMC Geriatrics, 20(1), 61. https://doi.org/10.1186/s12877-020-1454-y
41.
TuijtR.ReesJ.FrostR.WilcockJ.ManthorpeJ.RaitG.WaltersK. (2021). Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis. Dementia, 20(3), 1080–1104. https://doi.org/10.1177/1471301220915068
42.
WalkerJ.LeveilleS.KriegelG.LinC.-T.LiuS. K.PayneT. H.HarcourtK.DongZ.FitzgeraldP.GermakM.MarksonL.JacksonS. L.ShucardH.ElmoreJ. G.DelbancoT. (2021). Patients contributing to visit notes: Mixed methods evaluation of ournotes. Journal of Medical Internet Research, 23(11), Article e29951. https://doi.org/10.2196/29951
43.
WolffJ. L.DukhaninV.BurgdorfJ. G.DesRochesC. M. (2022). Shared access to patient portals for older adults: Implications for privacy and digital health equity. JMIR Aging, 5(2), Article e34628. https://doi.org/10.2196/34628
44.
ZulmanD. M.NaziK. M.TurveyC. L.WagnerT. H.WoodsS. S.AnL. C. (2011). Patient interest in sharing personal health record information: A web-based survey. Annals of Internal Medicine, 155(12), 805–810. https://doi.org/10.7326/0003-4819-155-12-201112200-00002
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