Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

References

• Bevan, J. L., & Sparks, L. (2011). Communication in the context of long-distance family caregiving: An integrated review and practical applications. Patient Education and Counseling, 85(1), 26–30. https://doi.org/10.1016/j.pec.2010.08.003
   PubMed Web of Science ®Google Scholar
• Blackstone, E., Lipson, A. R., & Douglas, S. L. (2019). Closer: A videoconference intervention for distance caregivers of cancer patients. Research in Nursing & Health, 42(4), 256–263. https://doi.org/10.1002/nur.21952
   PubMed Web of Science ®Google Scholar
• Cagle, J. G., & Kovacs, P. J. (2011). Informal caregivers of cancer patients: Perceptions about preparedness and support during hospice care. Journal of Gerontological Social Work, 54(1), 92–115. https://doi.org/10.1080/01634372.2010.534547
   PubMedGoogle Scholar
• Cagle, J. G., & Munn, J. C. (2012). Long-distance caregiving: A systematic review of the literature. Journal of Gerontological Social Work, 55(8), 682–707. https://doi.org/10.1080/01634372.2012.703763
   PubMedGoogle Scholar
• Cagle, J. G., Van Dussen, D. J., Culler, K. L., Carrion, I., Hong, S., Guralnik, J., & Zimmerman, S. (2016). Knowledge about hospice: Exploring misconceptions, attitudes, and preferences for care. American Journal of Hospice and Palliative Medicine, 33(1), 27–33. https://doi.org/10.1177/1049909114546885
   PubMed Web of Science ®Google Scholar
• Candrian, C., Tsantes, A., Matlock, D. D., Tate, C., & Kutner, J. S. (2018). “I just need to know they are going to do what they say they’re going to do with my mom.” Understanding hospice expectations from the patient, caregiver and admission nurse perspective. Patient Education and Counseling, 101(11), 2025–2030. https://doi.org/10.1016/j.pec.2018.08.005
   PubMed Web of Science ®Google Scholar
• Casarett, D., Crowley, R., Stevenson, C., Xie, S., & Teno, J. (2005). Making difficult decisions about hospice enrollment: What do patients and families want to know? Journal of the American Geriatrics Society, 53(2), 249–254. https://doi.org/10.1111/j.1532-5415.2005.53110.x
   PubMed Web of Science ®Google Scholar
• Chen, Q., Beal, E. W., Schneider, E. B., Okunrintemi, V., Zhang, X.F., & Pawlik, T. M. (2018). Patient-provider communication and health outcomes among individuals with hepato-pancreato-biliary disease in the USA. Journal of Gastrointestinal Surgery, 22(4), 624–632. https://doi.org/10.1007/s11605-017-3610-z
   PubMed Web of Science ®Google Scholar
• Chi, N. C., & Demiris, G. (2017). Family caregivers’ pain management in end-of-life care: A systematic review. American Journal of Hospice and Palliative Medicine, 34(5), 470–485. https://doi.org/10.1177/1049909116637359
   PubMed Web of Science ®Google Scholar
• Chi, N. C., Demiris, G., Pike, K. C., Washington, K., & Oliver, D. P. (2018a). Pain management concerns from the hospice family caregivers’ perspective. American Journal of Hospice and Palliative Medicine, 35(4), 601–611. https://doi.org/10.1177/1049909117729477
   PubMed Web of Science ®Google Scholar
• Chi, N. C., Demiris, G., Pike, K. C., Washington, K., & Parker Oliver, D. (2018b). Exploring the challenges that family caregivers faced when caring for hospice patients with heart failure. Journal of Social Work in End-Of-Life & Palliative Care, 14(2–3), 162–176. https://doi.org/10.1080/15524256.2018.1461168
   PubMed Web of Science ®Google Scholar
• Cloyes, K. G., Carpenter, J. G., Berry, P. H., Reblin, M., Clayton, M., & Ellington, L. (2014). “A true human interaction”: Comparison of family caregiver and hospice nurse perspectives on needs of family hospice caregivers. Journal of Hospice & Palliative Nursing, 16(5), 282–290. https://doi.org/10.1097/njh.0000000000000066
   Web of Science ®Google Scholar
• de Barbosa, I., & Silva, M. J. (2017). Nursing care by telehealth: What is the influence of distance on communication? Revista Brasileira de Enfermagem, 70(5), 928–934. https://doi.org/10.1590/0034-7167-2016-0142
   PubMedGoogle Scholar
• Demiris, G., Ganz, F. D. K., Han, C. J., Pike, K., Oliver, D. P., & Washington, K. (2020). Design and preliminary testing of the Caregiver-Centered Communication Questionnaire (CCCQ). Journal of Palliative Care, 35(3), 154–160. https://doi.org/10.1177/0825859719887239
   PubMed Web of Science ®Google Scholar
• Demiris, G., Oliver, D. P., & Wittenberg-Lyles, E. (2009). Assessing caregivers for team interventions (ACT): A new paradigm for comprehensive hospice quality care. American Journal of Hospice and Palliative Medicine, 26(2), 128–134. https://doi.org/10.1177/1049909108328697
   PubMed Web of Science ®Google Scholar
• Demiris, G., Pitzer, K., Washington, K., & Oliver, D. P. (2022). Reliability and validity testing of the caregiver centered communication questionnaire. Journal of Nursing Measurement, JNM-2022–0044.R1. Advance online publication. https://doi.org/10.1891/jnm-2022-0044
   Web of Science ®Google Scholar
• Doolittle, G. C., Nelson, E.-L., Spaulding, A. O., Lomenick, A. F., Krebill, H. M., Adams, N. J., Kuhlman, S. J., & Barnes, J. L. (2019). TeleHospice: A community-engaged model for utilizing mobile tablets to enhance rural hospice care. American Journal of Hospice and Palliative Medicine, 36(9), 795–800. https://doi.org/10.1177/1049909119829458
   PubMed Web of Science ®Google Scholar
• Douglas, S. L., Mazanec, P., Lipson, A. R., Day, K., Blackstone, E., Bajor, D. L., Saltzman, J., & Krishnamurthi, S. (2021). Videoconference intervention for distance caregivers of patients with cancer: A randomized controlled trial. JCO Oncology Practice, 17(1), e26–35. https://doi.org/10.1200/op.20.00576
   PubMedGoogle Scholar
• Douglas, S. L., Mazanec, P., Lipson, A., & Leuchtag, M. (2016). Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research. World Journal of Clinical Oncology, 7(2), 214–219. https://doi.org/10.5306/wjco.v7.i2.214
   PubMed Web of Science ®Google Scholar
• Ellington, L., Clayton, M. F., Reblin, M., Donaldson, G., & Latimer, S. (2018). Communication among cancer patients, caregivers, and hospice nurses: Content, process and change over time. Patient Education and Counseling, 101(3), 414–421. https://doi.org/10.1016/j.pec.2017.09.013
   PubMed Web of Science ®Google Scholar
• Ellington, L., Cloyes, K. G., Xu, J., Bellury, L., Berry, P. H., Reblin, M., & Clayton, M. F. (2018). Supporting home hospice family caregivers: Insights from different perspectives. Palliative & Supportive Care, 16(2), 209–219. https://doi.org/10.1017/s1478951517000219
   PubMed Web of Science ®Google Scholar
• Epstein, R. M., & Street, R. L. (2007). Patient-centered communication in cancer care: Promoting healing and reducing suffering (No. 07-6225). National Cancer Institute, National Institutes of Health. https://doi.org/10.1037/e481972008-001
   Google Scholar
• Ersek, M., Smith, D., Griffin, H., Carpenter, J. G., Feder, S. L., Shreve, S. T., Nelson, F. X., Kinder, D., Thorpe, J. M., & Kutney Lee, A. (2021). End-of-life care in the time of COVID-19: Communication matters more than ever. Journal of Pain and Symptom Management, 62(2), 213–222.e2. https://doi.org/10.1016/j.jpainsymman.2020.12.024
   PubMed Web of Science ®Google Scholar
• Falzarano, F., Cimarolli, V. R., Minahan, J., & Horowitz, A. (2020). Long-distance caregivers: What are their experiences with formal care providers? Clinical Gerontologist, 45(5), 1273–1284. https://doi.org/10.1080/07317115.2020.1783043
   PubMed Web of Science ®Google Scholar
• Fields, B., Rodakowski, J., James, A. E., & Beach, S. (2018). Caregiver health literacy predicting healthcare communication and system navigation difficulty. Families, Systems, & Health, 36(4), 482–492. https://doi.org/10.1037/fsh0000368
   PubMed Web of Science ®Google Scholar
• Fischer, T., & Jobst, M. (2020). Capturing the spatial relatedness of long-distance caregiving: A mixed-methods approach. International Journal of Environmental Research and Public Health, 17(17), 6406. https://doi.org/10.3390/ijerph17176406
   PubMed Web of Science ®Google Scholar
• Franke, A., Kramer, B., Jann, P. M., van Holten, K., Zentgraf, A., Otto, U., & Bischofberger, I. (2019). Current findings on distance caregiving: What do we know and what do we not (yet) know? Zeitschrift für Gerontologie und Geriatrie, 52(6), 521–528. https://doi.org/10.1007/s00391-019-01596-2
   PubMed Web of Science ®Google Scholar
• Gunn, K. M., Luker, J., Ramanathan, R., Skrabal Ross, X., Hutchinson, A., Huynh, E., & Olver, I. (2021). Choosing and managing aged care services from afar: What matters to Australian long-distance care givers. International Journal of Environmental Research and Public Health, 18(24), 13000. https://doi.org/10.3390/ijerph182413000
   PubMed Web of Science ®Google Scholar
• Hajjar, L., & Kragen, B. (2021). Timely communication through telehealth: Added value for a caregiver during COVID-19. Frontiers in Public Health, 9, 755391. https://doi.org/10.3389/fpubh.2021.755391
   PubMed Web of Science ®Google Scholar
• Herbst, F. A., Schneider, N., & Stiel, S. (2022). Long-distance caregiving at the end of life: A protocol for an exploratory qualitative study in Germany. BMC Palliative Care, 21(1), 69. https://doi.org/10.1186/s12904-022-00967-8
   PubMed Web of Science ®Google Scholar
• Hughes, N. M., Noyes, J., Eckley, L., & Pritchard, T. (2019). What do patients and family-caregivers value from hospice care? A systematic mixed studies review. BMC Palliative Care, 18(1), 18. https://doi.org/10.1186/s12904-019-0401-1
   PubMedGoogle Scholar
• Hwang, D., Teno, J. M., Clark, M., Shield, R., Williams, C., Casarett, D., & Spence, C. (2014). Family perceptions of quality of hospice care in the nursing home. Journal of Pain and Symptom Management, 48(6), 1100–1107. https://doi.org/10.1016/j.jpainsymman.2014.04.003
   PubMed Web of Science ®Google Scholar
• Ingram, C., Bruce, C. J., Shadbolt, E. L., Mahnke, E., Darkins, A., Dodd, S., & Streeter, L. M. (2020). Let there be PEACE: Improving continuous symptom monitoring in hospice patients. Mayo Clinic Proceedings: Innovations, Quality & Outcomes, 4(3), 287–294. https://doi.org/10.1016/j.mayocpiqo.2020.01.006
   PubMedGoogle Scholar
• Kwame, A., & Petrucka, P. M. (2021). A literature-based study of patient-centered care and communication in nurse-patient interactions: Barriers, facilitators, and the way forward. BMC Nursing, 20(1), 158. https://doi.org/10.1186/s12912-021-00684-2
   PubMed Web of Science ®Google Scholar
• Ladin, K., Porteny, T., Perugini, J. M., Gonzales, K. M., Aufort, K. E., Levine, S. K., Wong, J. B., Isakova, T., Rifkin, D., Gordon, E. J., Rossi, A., Koch-Weser, S., & Weiner, D. E. (2021). Perceptions of telehealth vs in-person visits among older adults with advanced kidney disease, care partners, and clinicians. JAMA Network Open, 4(12), e2137193. https://doi.org/10.1001/jamanetworkopen.2021.37193
   PubMed Web of Science ®Google Scholar
• Lee, J., & Cagle, J. G. (2017). Factors associated with opinions about hospice among older adults. Journal of Palliative Care, 32(3–4), 101–107. https://doi.org/10.1177/0825859717738441
   PubMed Web of Science ®Google Scholar
• Li, M., Mao, W., Chi, I., & Lou, V. W. Q. (2019). Geographical proximity and depressive symptoms among adult child caregivers: Social support as a moderator. Aging & Mental Health, 23(2), 205–213. https://doi.org/10.1080/13607863.2017.1399349
   PubMed Web of Science ®Google Scholar
• Luth, E. A., Maciejewski, P. K., Phongtankuel, V., Xu, J., & Prigerson, H. G. (2021). Associations between hospice care and scary family caregiver experiences. Journal of Pain and Symptom Management, 61(5), 909–916. https://doi.org/10.1016/j.jpainsymman.2020.08.041
   PubMed Web of Science ®Google Scholar
• Mazanec, P. (2012). Distance caregiving a parent with cancer. Seminars in Oncology Nursing, 28(4), 271–278. https://doi.org/10.1016/j.soncn.2012.09.010
   PubMedGoogle Scholar
• Mazanec, P., Daly, B. J., Ferrell, B. R., & Prince-Paul, M. (2011). Lack of communication and control: Experiences of distance caregivers of parents with advanced cancer. Oncology Nursing Forum, 38(3), 307–313. https://doi.org/10.1188/11.onf.307-313
   PubMed Web of Science ®Google Scholar
• McCormack, L. A., Treiman, K., Rupert, D., Williams-Piehota, P., Nadler, E., Arora, N. K., Lawrence, W., & Street, R. L. (2011). Measuring patient-centered communication in cancer care: A literature review and the development of a systematic approach. Social Science & Medicine, 72(7), 1085–1095. https://doi.org/10.1016/j.socscimed.2011.01.020
   PubMed Web of Science ®Google Scholar
• Munoz, I. O., Amo Setien, F. J., Diaz Agea, J. L., Hernandez Ruiperez, T., Adanez Martinez, M. G., & Leal Costa, C. (2020). The communication skills and quality perceived in an emergency department: The patient’s perspective. International Journal of Nursing Practice, 26(3), e12831. https://doi.org/10.1111/ijn.12831
   PubMed Web of Science ®Google Scholar
• National Alliance for Caregiving. (2004). Miles away: The MetLife study of long-distance caregiving. Caregiving.org. Retrieved November 15, 2022, from https://www.caregiving.org/wp-content/uploads/2020/05/milesaway.pdf
   Google Scholar
• Nelissen, E., Prickaerts, J., & Blokland, A. (2018). Acute stress negatively affects object recognition early memory consolidation and memory retrieval unrelated to state-dependency. Behavioural Brain Research, 345, 9–12. https://doi.org/10.1016/j.bbr.2018.02.027
   PubMed Web of Science ®Google Scholar
• Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Vedsted, P., Bro, F., & Guldin, M. -B. (2017). Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study. Psycho-Oncology, 26(12), 2048–2056. https://doi.org/10.1002/pon.4416
   PubMed Web of Science ®Google Scholar
• Okunrintemi, V., Spatz, E. S., DiCapua, P., Salami, J. A., Valero Elizondo, J., Warraich, H., Virani, S. S., Blaha, M. J., Blankstein, R., Butt, A. A., Borden, W. B., Dharmarajan, K., Ting, H., Krumholz, H. M., & Nasir, K. (2017). Patient–provider communication and health outcomes among individuals with atherosclerotic cardiovascular disease in the United States. Circulation: Cardiovascular Quality and Outcomes, 10(4), 1–16. https://doi.org/10.1161/circoutcomes.117.003635
   Web of Science ®Google Scholar
• Oliver, D. P., Demiris, G., Benson, J., White, P., Wallace, A., Pitzer, K., & Washington, K. (2022). Family caregiving experiences with hospice lung cancer patients compared to other cancer types. Journal of Psychosocial Oncology, 1–16. https://doi.org/10.1080/07347332.2022.2101907
   Web of Science ®Google Scholar
• Oliver, D. P., Demiris, G., Washington, K. T., Clark, C., & Thomas-Jones, D. (2017). Challenges and strategies for hospice caregivers: A qualitative analysis. The Gerontologist, 57(4), 648–656. https://doi.org/10.1093/geront/gnw054
   PubMed Web of Science ®Google Scholar
• Oliver, D. P., Demiris, G., Washington, K., Kruse, R. L., & Petroski, G. (2017). Hospice family caregiver involvement in care plan meetings: A mixed-methods randomized controlled trial. American Journal of Hospice and Palliative Medicine, 34(9), 849–859. https://doi.org/10.1177/1049909116661816
   PubMed Web of Science ®Google Scholar
• Oliver, D. P., Wittenberg-Lyles, E., Washington, K., Kruse, R. L., Albright, D. L., Baldwin, P. K., Boxer, A., & Demiris, G. (2013). Hospice caregivers’ experiences with pain management: “I’m not a doctor, and I don’t know if I helped her go faster or slower.“ Journal of Pain and Symptom Management, 46(6), 846–858. https://doi.org/10.1016/j.jpainsymman.2013.02.011
   PubMed Web of Science ®Google Scholar
• Orlando, J. F., Beard, M., & Kumar, S. (2019). Systematic review of patient and caregivers’ satisfaction with telehealth videoconferencing as a mode of service delivery in managing patients’ health. Plos One, 14(8), e0221848. https://doi.org/10.1371/journal.pone.0221848
   PubMed Web of Science ®Google Scholar
• Parola, V., Coelho, A., Cardoso, D., Sandgren, A., & Apóstolo, J. (2017). Prevalence of burnout in health professionals working in palliative care: A systematic review. JBI Database of Systematic Reviews and Implementation Reports, 15(7), 1905–1933. https://doi.org/10.11124/jbisrir-2016-003309
   PubMedGoogle Scholar
• Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583
   PubMed Web of Science ®Google Scholar
• Phongtankuel, V., Paustian, S., Reid, M. C., Finley, A., Martin, A., Delfs, J., Baughn, R., & Adelman, R. D. (2017). Events leading to hospital-related disenrollment of home hospice patients: A study of primary caregivers’ perspectives. Journal of Palliative Medicine, 20(3), 260–265. https://doi.org/10.1089/jpm.2015.0550
   PubMed Web of Science ®Google Scholar
• Phongtankuel, V., Scherban, B. A., Reid, M. C., Finley, A., Martin, A., Dennis, J., & Adelman, R. D. (2016). Why do home hospice patients return to the hospital? A study of hospice provider perspectives. Journal of Palliative Medicine, 19(1), 51–56. https://doi.org/10.1089/jpm.2015.0178
   PubMed Web of Science ®Google Scholar
• Quigley, D. D., & McCleskey, S. G. (2021). Improving care experiences for patients and caregivers at end of life: A systematic review. American Journal of Hospice and Palliative Medicine, 38(1), 84–93. https://doi.org/10.1177/1049909120931468
   PubMed Web of Science ®Google Scholar
• Ragan, S. L. (2016). Overview of communication. In E. Wittenberg, B. R. Ferell & J. Goldsmith (Eds.), Textbook of palliative communication (pp. 1–9). Oxford University Press.
   Google Scholar
• Rai, M. K., Loschky, L. C., & Harris, R. J. (2015). The effects of stress on reading: A comparison of first-language versus intermediate second-language reading comprehension. Journal of Educational Psychology, 107(2), 348–363. https://doi.org/10.1037/a0037591
   Web of Science ®Google Scholar
• Reblin, M., Clayton, M. F., Xu, J., Hulett, J. M., Latimer, S., Donaldson, G. W., & Ellington, L. (2017). Caregiver, patient, and nurse visit communication patterns in cancer home hospice. Psycho-Oncology, 26(12), 2285–2293. https://doi.org/10.1002/pon.4361
   PubMed Web of Science ®Google Scholar
• Rutten, L. J. F., Augustson, E., & Wanke, K. (2006). Factors associated with patients’ perceptions of health care providers’ communication behavior. Journal of Health Communication, 11(sup001), 135–146. https://doi.org/10.1080/10810730600639596
   PubMedGoogle Scholar
• Salem, R., El Zakhem, A., Gharamti, A., Tfayli, A., & Osman, H. (2020). Palliative care via telemedicine: A qualitative study of caregiver and provider perceptions. Journal of Palliative Medicine, 23(12), 1594–1598. https://doi.org/10.1089/jpm.2020.0002
   PubMed Web of Science ®Google Scholar
• Scholz, B., Goncharov, L., Emmerich, N., Lu, V. N., Chapman, M., Clark, S. J., Wilson, T., Slade, D., & Mitchell, I. (2020). Clinicians’ accounts of communication with patients in end-of-life care contexts: A systematic review. Patient Education and Counseling, 103(10), 1913–1921. https://doi.org/10.1016/j.pec.2020.06.033
   PubMed Web of Science ®Google Scholar
• Schoonover, C. B., Brody, E. M., Hoffman, C., & Kleban, M. H. (1988). Parent care and geographically distant children. Research on Aging, 10(4), 472–492. https://doi.org/10.1177/0164027588104002
   PubMed Web of Science ®Google Scholar
• Shalev, A., Phongtankuel, V., Kozlov, E., Shen, M. J., Adelman, R. D., & Reid, M. C. (2018). Awareness and misperceptions of hospice and palliative care: A population-based survey study. American Journal of Hospice and Palliative Medicine, 35(3), 431–439. https://doi.org/10.1177/1049909117715215
   PubMed Web of Science ®Google Scholar
• Shalev, A., Phongtankuel, V., Reid, M. C., Czaja, S. J., Dignam, R., Baughn, R., Newmark, M., Prigerson, H. G., Teresi, J., & Adelman, R. D. (2019). Home hospice caregivers’ perceived information needs. American Journal of Hospice and Palliative Medicine, 36(4), 302–307. https://doi.org/10.1177/1049909118805413
   PubMed Web of Science ®Google Scholar
• Solli, H., & Hvalvik, S. (2019). Nurses striving to provide caregiver with excellent support and care at a distance: A qualitative study. BMC Health Services Research, 19(1), 893. https://doi.org/10.1186/s12913-019-4740-7
   PubMed Web of Science ®Google Scholar
• Spooner, K. K., Salemi, J. L., Salihu, H. M., & Zoorob, R. J. (2016). Disparities in perceived patient–provider communication quality in the United States: Trends and correlates. Patient Education and Counseling, 99(5), 844–854. https://doi.org/10.1016/j.pec.2015.12.007
   PubMed Web of Science ®Google Scholar
• Stafford, L. (2005). Maintaining long-distance and cross-residential relationships. Lawrence Erlbaum Associates.
   Google Scholar
• Starr, L. T., Bullock, K., Washington, K., Aryal, S., Oliver, D. P., & Demiris, G. (2021). Anxiety, depression, quality of life, caregiver burden, and perceptions of caregiver centered communication among black and white hospice family caregivers. Journal of Palliative Medicine, 25(4), 596–605. https://doi.org/10.1089/jpm.2021.0302
   PubMed Web of Science ®Google Scholar
• Starr, L. T., Washington, K., McPhillips, M. V., Pitzer, K., Demiris, G., & Oliver, D. P. (2022). Insomnia symptoms among hospice family caregivers: Prevalence and association with caregiver mental and physical health, quality of life, and caregiver burden. American Journal of Hospice and Palliative Medicine, 104990912211058. Advance online publication. https://doi.org/10.1177/10499091221105882
   Web of Science ®Google Scholar
• Tamayo, G. J., Broxson, A., Munsell, M., & Cohen, M. Z. (2010). Caring for the caregiver. Oncology Nursing Forum, 37(1), E50–57. https://doi.org/10.1188/10.ONF.E50-E57
   PubMedGoogle Scholar
• Tatsumi, H., Nakaaki, S., Satoh, M., Yamamoto, M., Chino, N., & Hadano, K. (2016). Relationships among communication self-efficacy, communication burden, and the mental health of the families of persons with aphasia. Journal of Stroke and Cerebrovascular Diseases, 25(1), 197–205. https://doi.org/10.1016/j.jstrokecerebrovasdis.2015.09.018
   PubMed Web of Science ®Google Scholar
• Waldrop, D. P., Meeker, M. A., Kerr, C., Skretny, J., Tangeman, J., & Milch, R. (2012). The nature and timing of family-provider communication in late-stage cancer: A qualitative study of caregivers’ experiences. Journal of Pain and Symptom Management, 43(2), 182–194. https://doi.org/10.1016/j.jpainsymman.2011.04.017
   PubMed Web of Science ®Google Scholar
• Washington, K. T., Craig, K. W., Parker Oliver, D., Ruggeri, J. S., Brunk, S. R., Goldstein, A. K., & Demiris, G. (2019). Family caregivers’ perspectives on communication with cancer care providers. Journal of Psychosocial Oncology, 37(6), 777–790. https://doi.org/10.1080/07347332.2019.1624674
   PubMed Web of Science ®Google Scholar
• Washington, K. T., Demiris, G., Oliver, D. P., Backonja, U., Norfleet, M., Han, C. J., & Popescu, M. (2020). ENVISION: A tool to improve communication in hospice interdisciplinary team meetings. Journal of Gerontological Nursing, 46(7), 9–14. https://doi.org/10.3928/00989134-20200605-03
   PubMed Web of Science ®Google Scholar
• Washington, K. T., Demiris, G., Pitzer, K. A., Tunink, C., Benson, J. J., & Oliver, D. P. (2022). Family members’ perceptions of caregiver-centered communication with hospice interdisciplinary teams: Relationship to caregiver wellbeing. Journal of Palliative Care, 082585972211137. Advance online publication. https://doi.org/10.1177/08258597221113725
   Web of Science ®Google Scholar
• Weber-Raley, L., & Haggerty, K. (2020). Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+. Caregiving.org. Retrieved November 15, 2022, from https://www.caregiving.org/wp-content/uploads/2021/05/AARP1340_RR_Caregiving50Plus_508.pdf
   Google Scholar
• Wieczorek, C. C., Nowak, P., Frampton, S. B., & Pelikan, J. M. (2018). Strengthening patient and family engagement in healthcare: The New Haven recommendations. Patient Education and Counseling, 101(8), 1508–1513. https://doi.org/10.1016/j.pec.2018.04.003
   PubMed Web of Science ®Google Scholar
• Wittenberg, E., Buller, H., Ferrell, B., Koczywas, M., & Borneman, T. (2017). Understanding family caregiver communication to provide family-centered cancer care. Seminars in Oncology Nursing, 33(5), 507–516. https://doi.org/10.1016/j.soncn.2017.09.001
   PubMed Web of Science ®Google Scholar
• Wittenberg, E., Goldsmith, J. V., & Kerr, A. M. (2019). Variation in health literacy among family caregiver communication types. Psycho-Oncology, 28(11), 2181–2187. https://doi.org/10.1002/pon.5204
   PubMed Web of Science ®Google Scholar
• Wittenberg, E., Kerr, A. M., & Goldsmith, J. (2021). Exploring family caregiver communication difficulties and caregiver quality of life and anxiety. American Journal of Hospice and Palliative Medicine, 38(2), 147–153. https://doi.org/10.1177/1049909120935371
   PubMed Web of Science ®Google Scholar
• Wolff, J. L., Freedman, V. A., Ornstein, K. A., Mulcahy, J. F., & Kasper, J. D. (2020). Evaluation of hospice enrollment and family and unpaid caregivers’ experiences with health care workers in the care of older adults during the last month of life. JAMA Network Open, 3(4), e203599. https://doi.org/10.1001/jamanetworkopen.2020.3599
   PubMed Web of Science ®Google Scholar
• York, G. S., Churchman, R., Woodard, B., Wainright, C., & Rau-Foster, M. (2012). Free-text comments: Understanding the value in family member descriptions of hospice caregiver relationships. American Journal of Hospice and Palliative Medicine, 29(2), 98–105. https://doi.org/10.1177/1049909111409564
   PubMed Web of Science ®Google Scholar
• Zentgraf, A., Jann, P. M., Myrczik, J., & van Holten, K. (2019). Distance caregiving?: A qualitative interview study with distance caregivers. Zeitschrift für Gerontologie und Geriatrie, 52(6), 539–545. https://doi.org/10.1007/s00391-019-01607-2
   PubMed Web of Science ®Google Scholar