More than 7.3 million older adults in the United States have difficulty leaving their homes or are completely homebound, yet little data exist on the experiences of homebound older adults and their caregivers. We conducted 30 semi-structured qualitative interviews with homebound older adults and caregivers recruited through home-based medical care practices in Baltimore and San Francisco. Thematic template analyses revealed that homebound older adults experience varying degrees of independence in activities of daily living, although their degree of dependence increases over time. Caregivers have a multifaceted, round-the-clock role. Both patients and caregivers experience burdens including social isolation and guilt. Navigating medical care and caregiving was further complicated by the complexity of the U.S. health care system; however, home-based medical care was viewed as a high-quality alternative to hospitals or nursing homes. Our findings suggest that providers and health care systems should expand the availability and accessibility of home-based care and improve caregiver support opportunities.
BellS.MenecV. (2015). "You don’t want to ask for the help" The imperative of independence: Is it related to social exclusion?Journal of Applied Gerontology, 34(3), NP1–NP21. https://doi.org/10.1177/0733464812469292
3.
BootsL. M. M.WolfsC. A. G.VerheyF. R. J.KempenG. I. J. M.De VugtM. E. (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. International Psychogeriatrics, 27(6), 927–936. https://doi.org/10.1017/S1041610214002804
4.
BrooksJ.McCluskeyS.TurleyE.KingN. (2015). The utility of template analysis in qualitative psychology research. Qualitative Research in Psychology, 12(2), 202–222. https://doi.org/10.1080/14780887.2014.955224
5.
ChengJ. M.BattenG. P.CornwellT.YaoN. (2020). A qualitative study of health-care experiences and challenges faced by ageing homebound adults. Health Expectations, 23(4), 934–942. https://doi.org/10.1111/hex.13072
6.
Crawford ShearerN. B.FleuryJ. D.BelyeaM. (2010). An innovative approach to recruiting homebound older adults. Research in Gerontological Nursing, 3(1), 11–17. https://doi.org/10.3928/19404921-20091029-01
7.
DecherrieL. V.SorianoT.HayashiJ. (2012). Home-based primary care: A needed primary-care model for vulnerable populations. Mount Sinai Journal of Medicine, 79(4), 425–432. https://doi.org/10.1002/msj.21321
8.
Eaton EnglandA. L.RitchieC. S.MicklerA.PerissinottoC. M.GarriguesS. K.LeffB.HarrisonK. L. (2020). Attitudes of homebound older adults and their caregivers toward research and participation as research advisors. The Gerontologist. Advance online publication. https://doi.org/10.1093/geront/gnaa189
9.
FeredayJ.Muir-CochraneE. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80–92. https://doi.org/10.1177/160940690600500107
10.
FleurenceR.SelbyJ. V.Odom-WalkerK.HuntG.MeltzerD.SlutskyJ. R.YancyC. (2013). How the patient-centered outcomes research institute is engaging patients and others in shaping its research agenda. Health Affairs, 32(2), 393–400. https://doi.org/10.1377/hlthaff.2012.1176
HashimovE. (2015). Qualitative data analysis: A methods sourcebook and the coding manual for qualitative researchers. Technical Communication Quarterly, 24(1), 109–112. https://doi.org/10.1080/10572252.2015.975966
14.
KavalieratosD.SiconolfiD. E.SteinhauserK. E.BullJ.ArnoldR. M.SwetzK. M.KamalA. H. (2017). “It is like heart failure. It is chronic . . . and it will kill you”: A qualitative analysis of burnout among hospice and palliative care clinicians. Journal of Pain and Symptom Management, 53(5), 901–910e1. https://doi.org/10.1016/j.jpainsymman.2016.12.337
15.
KingN. (1998). Template analysis. In SymonG.CassellC. (Eds.), Qualitative methods and analysis in organizational research (pp. 118–134). Sage.
NormanG. J.WadeA. J.MorrisA. M.SlabodaJ. C. (2018). Home and community-based services coordination for homebound older adults in home-based primary care. BMC Geriatrics, 18(1), Article 241. https://doi.org/10.1186/s12877-018-0931-z
19.
OrnsteinK. A.KelleyA. S.Bollens-LundE.WolffJ. L. (2017). A national profile of end-of-life caregiving in the United States. Health Affairs, 36(7), 1184–1192. https://doi.org/10.1377/hlthaff.2017.0134
20.
OrnsteinK. A.LeffB.CovinskyK. E.RitchieC. S.FedermanA. D.RobertsL.SzantonS. L. (2015). Epidemiology of the homebound population in the United States. JAMA Internal Medicine, 175(7), 1180–1186. https://doi.org/10.1001/jamainternmed.2015.1849
QiuW. Q.DeanM.LiuT.GeorgeL.GannM.CohenJ.BruceM. L. (2010). Physical and mental health of homebound older adults: An overlooked population. Journal of the American Geriatrics Society, 58(12), 2423–2428. https://doi.org/10.1111/j.1532-5415.2010.03161.x
RobinsonK. M.ReinhardS. C. (2009, June). Looking ahead in long-term care: The next 50 years. Nursing Clinics of North America, 44(2), 253–262. https://doi.org/10.1016/j.cnur.2009.02.004
25.
SchuchmanM.FainM.CornwellT. (2018, September1). The resurgence of home-based primary care models in the United States. Geriatrics, 3(3), Article 41. https://doi.org/10.3390/geriatrics3030041
ShafirA.GarriguesS. K.SchenkerY.LeffB.NeilJ.RitchieC. (2016). Homebound patient and caregiver perceptions of quality of care in home-based primary care: A qualitative study. Journal of the American Geriatrics Society, 64(8), 1622–1627. https://doi.org/10.1111/jgs.14244
28.
SheehanO. C.Graham-PhillipsA. L.WilsonJ. D.CrewsD. C.HoltC. L.GabbardJ.RothD. L. (2019). Non-spouse companions accompanying older adults to medical visits: A qualitative analysis. BMC Geriatrics, 19(1), Article 84. https://doi.org/10.1186/s12877-019-1098-y
29.
SheehanO. C.RitchieC. S.GarrettS. B.HarrisonK. L.MicklerA.Eaton EnglandA. L.LeffB. (2020, August1). Unanticipated therapeutic value of the Patient-Centered Outcomes Research Institute (PCORI) stakeholder engagement project for homebound older adults. Journal of the American Medical Directors Association, 21(8), 1172–1173. https://doi.org/10.1016/j.jamda.2020.03.013
30.
SmithK. L.OrnsteinK.SorianoT.MullerD.BoalJ. (2006, August). A multidisciplinary program for delivering primary care to the underserved urban homebound: Looking back, moving forward. Journal of the American Geriatrics Society, 54(8), 1283–1289. https://doi.org/10.1111/j.1532-5415.2006.00835.x
31.
SoonesT.FedermanA.LeffB.SiuA. L.OrnsteinK. (2017). Two-year mortality in homebound older adults: An analysis of the National Health and Aging Trends Study. Journal of the American Geriatrics Society, 65(1), 123–129. https://doi.org/10.1111/jgs.14467
32.
SzantonS. L.WolffJ. W.LeffB.ThorpeR. J.TannerE. K.BoydC.GitlinL. N. (2014). CAPABLE trial: A randomized controlled trial of nurse, occupational therapist and handyman to reduce disability among older adults: Rationale and design. Contemporary Clinical Trials, 38(1), 102–112. https://doi.org/10.1016/j.cct.2014.03.005
33.
Van KempenJ. A. L.RobbenS. H. M.ZuidemaS. U.Olde RikkertM. G. M.MelisR. J. F.SchersH. J. (2012). Home visits for frail older people: A qualitative study on the needs and preferences of frail older people and their informal caregivers. British Journal of General Practice, 62(601), e554–e560. https://doi.org/10.3399/bjgp12X653606
34.
WarnerC. B.RobertsA. R.JeanblancA. B.AdamsK. B. (2019). Coping resources, loneliness, and depressive symptoms of older women with chronic illness. Journal of Applied Gerontology, 38(3), 295–322. https://doi.org/10.1177/0733464816687218
35.
WilkinsV. M.BruceM. L.SireyJ. A. (2009). Caregiving tasks and training interest of family caregivers of medically ill homebound older adults. Journal of Aging and Health, 21(3), 528–542. https://doi.org/10.1177/0898264309332838
36.
WolffJ. L.MulcahyJ.HuangJ.RothD. L.CovinskyK.KasperJ. D. (2018). Family caregivers of older adults, 1999-2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 1021–1032. https://doi.org/10.1093/geront/gnx093
37.
WolffJ. L.SpillmanB. C.FreedmanV. A.KasperJ. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3), 372–379. https://doi.org/10.1001/jamainternmed.2015.7664
38.
WoolE.ShotwellJ. L.SlabodaJ.KozikowskiA.SmithK. L.AbrashkinK.PekmezarisR. (2019). A qualitative investigation of the impact of home-based primary care on family caregivers. The Journal of Frailty & Aging, 8(4), 210–214. https://doi.org/10.14283/jfa.2019.19
39.
YaoN. (Aaron)RitchieC.CornwellT.LeffB. (2018). Use of home-based medical care and disparities. Journal of the American Geriatrics Society, 66(9), 1716–1720. https://doi.org/10.1111/jgs.15444
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