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Bibliography

Anger

  • Cancer.Net. (2022). How to Cope with Anger. Retrieved from https://www.cancer.net/coping-with-cancer/managing-emotions/how-cope-wi…
  • Levoy, K., Wool, J., Ashare, R.L., Rosa, W.E., Barg, F.K., Meghani, S.H. (2022). “It’s rougher on me than it is on him”: Family caregiver-generated and prioritized illness concerns while patients undergo cancer treatments. JCO Oncology Practice, 18(4), e525-e536. doi: 10.1200/OP.21.00164.
  • Zauszniewski, J.A., Burant, C.J., MartinR.J., Sweetko, J.S., DiFranco, E. (2022). Caregivers' use of personal and social resourcefulness: Differences by care recipient condition. Western Journal of Nursing Research, 44(3), 288-295. doi: 10.1177/01939459211050951.

Anxiety

  • Cao, Q., Gong, J., Chen, M., Lin, Y., Li, Q. (2022) The dyadic effects of self-efficacy on quality of life in advanced cancer patient and family caregiver dyads: The mediating role of benefit finding, anxiety, and depression. Hindawi Journal of Oncology, 2, 3073358.
  • Deshields, T.L., Asvat, Y., Tippey, A.R., Vanderlan, J.R. (2022). Distress, depression, anxiety, and resilience in patients with cancer and caregivers. Health Psychology, 41(4), 246-255.
  • Kusi, G., Atenafu, E.G., Mensah, A.B.B., Lee, C.T., Viswabandya, A., Puts, M., Mayo, S. (2023). The effectiveness of psychoeducational interventions on caregiver-oriented outcomes in caregivers of adult cancer patients: A systematic review and meta-analysis. Psychooncology, 32(2), 189-202.
  • Forst, D.A., Kaslow-Zieve, E.R., Hansen, A., Mesa, M. Landay, S.L., Quain, K.M., Sereno, I., El-Jawahri, A., J Greer, J.A., Temel, J.S., Jacobs, J.M. (2023). Characterizing distress and identifying modifiable intervention targets for family caregivers of patients with malignant gliomas. Journal of Palliative Medicine, 26(1), 17-27.

Avoiding Substance Abuse

Caregiver Burnout & Stress

  • Hee, M., Songjah, J., Lee, S. (2022). Effect of laughter therapy on mood disturbances, pain, and burnout in termally ill cancer patients and family caregivers. Cancer Nursing. Epub before print. DOI: 10.1097/NCC.0000000000001162
  • Koumarianou, A., Symeonidi, A., Kattamis, A., Linardatou, K., Chrousos, G., & Darviri, C. (2021). A review of psychosocial interventions targeting families of children with cancer. Palliative & Supportive Care, 19(1), 103-118. https://doi.org/10.1017/S1478951520000449
  • Yaman, A., & Büyükyılmaz, F. (2022). The effect of relaxation exercises on burden, burnout, and anxiety levels in palliative caregivers. Perspectives in Psychiatric Care, 58(3), 1089-1095. DOI: 10.1111/ppc.12906

Depression

  • Cheng, Q., Xu, B., Ng, M.S.N., Duan, Y., So, W.K.W. (2022). Effectiveness of psychoeducational interventions among caregivers of patients with cancer: A systematic review and meta-analysis. International Journal of Nursing Studies, 127, 104162. DOI:10.1016/j.ijnurstu.2021.104162
  • Lei, F., Lee, E., Shin., J., Lee, S.Y. (2023). Non-pharmacological interventions on anxiety and depression in lung cancer patients’ informal caregivers: A systematic review and meta-analysis. PLoS One, 18(3) e0282887. doi: 10.1371/journal.pone.0282887.
  • Li, Y., Li, J., Zhang, Y., Ding, Y., Hu, X. (2022). The effectiveness of e-Health interventions on caregiver burden, depression, and quality of life in informal caregivers of patients with cancer: A systematic review and meta-analysis of randomized controlled trials. International Journal of Nursing Studies, 127, 104179. https://doi.org/10.1016/j.ijnurstu.2022.104179

Eating Well

Eight Tips for Long-Distance Caregiving

Emergency Preparedness

Family Meetings

  • Littell, R.D., Kumar, A., Einstein, M.H., Karam, A., & Bevis, K. (2019). Advanced communication: a critical component of high quality gynecologic cancer care: A Society of Gynecologic Oncology evidence based review and guide. Gynecologic oncology, 155(1), 161-169.
  • Ghoshal, A., Salins, N., Damani, A., Chowdhury, J., Chitre, A., Muckaden, M.A., ... & Badwe, R. (2019). To tell or not to tell: Exploring the preferences and attitudes of patients and family caregivers on disclosure of a cancer-related diagnosis and prognosis. Journal of global oncology, 5, 1-12.
  • Jung, M.Y., & Matthews, A.K. (2021). A systematic review of clinical interventions facilitating end-of-life communication between patients and family caregivers. American Journal of Hospice and Palliative Medicine®, 38(2), 180-190.

Fatigue

  • Zheng, Y., Cotton, A.C., He, L., & Wuest, L. G. (2021). Spirituality-integrated interventions for caregivers of patients with terminal illness: A systematic review of quantitative outcomes. Journal of Religion and Health, 60, 2939–2959 (2021). https://doi.org/10.1007/s10943-021-01221-w
  • Faieta, J., Sheehan, J., & DiGiovine , C. (2022). Mhealth interventions to improve health and quality of life related outcomes for informal dementia caregivers: A scoping review. Assistive Technology, 34(3), 362-374, DOI: 10.1080/10400435.2020.1829174
  • Langenberg, S.M.C.H., vanHerpen, C.M.L., van Opstal, C.C.M., Wymenga, A.N.M., van der Graaf, W.T.A., Prins, J.B. (2019). Caregivers’ burden and fatigue during and after patients’ treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: A prospective observational pilot study. Supportive Care in Cancer, 27(11) 4145-4154

Fear & Uncertainty

  • Guan, T., Qan’ir, Y. & Song, L. (2021). Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers. Support Care Cancer 29, 4623–4640. https://doi.org/10.1007/s00520-020-05931-x
  • Petursdottir, A. B., Rayens, M. K., Sigurdardottir, V., & Svavarsdottir, E. K. (2021). Long-term effect of receiving a family strengths-oriented intervention on family cancer caregiver stress, anxiety, and depression symptoms: A longitudinal quasi-experimental study. Journal of Family Nursing, 27(2), 114-123. DOI 10.1177/1074840721994332
  • Guan, T., Chapman, M.V., de Saxe Zerden, L. et al. Correlates of illness uncertainty in cancer survivors and family caregivers: a systematic review and meta-analysis. Support Care Cancer 31, 242 (2023). DOI 10.1007/s00520-023-07705-7

Getting Caregiver Help

  • Alfano, C.M., Leach, C.R., Smith, T.G., Miller, K.D., Alcaraz, K.I., Cannady, R.S., Wender, R.C., Brawley, O.W. (2019). Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy. CA: A Cancer Journal for Clinicians, 69(1), 35-49. DOI: 10.3322/caac.21548
  • Cancer.Net. (2019). Caregivers Taking Care of Themselves. Retrieved from https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-t…
  • Cancer.Net. (2023). Finding Social Support and Information. Retrieved from https://www.cancer.net/coping-with-c%C3%A1ncer/finding-social-support-a…
  • Korotkin, B.D., Hoerger, M., Voorhees, S., Allen, C.O., Robinson, W.R., Duberstein, P.R. (2019). Social support in cancer: How do patients want us to help? Journal of Psychosocial Oncology, 37(6), 699-712. doi: 10.1080/07347332.2019.1580331.

Getting Exercise

  • Doyle, K.L., Toepfer, M., Bradfield, A.F., Noffke, A., Ausderau, K.K., Andreae, S., Pickett, K.A. (2021). Systematic review of exercise for caregiver-care recipient dyads: What is best for spousal caregivers-exercising together or not at all? The Gerontologist, 61(6), e283-e301.
  • Hives, B.A., Buckler, E.J., Weiss, J., Schilf, S., Johansen, K.L., Epel, E.S., Puterman, E. (2021). The effects of aerobic exercise on psychological functioning in family caregivers: Secondary analyses of a randomized controlled trial. Annals of Behavioral Medicine, 55(1), 65-76.

    Helping from a Distance

    • Douglas, S.L., Mazanec, P., Lipson, A.R., Day, K., Blackstone, E., Bajor, D.L., ... & Krishnamurthi, S. (2021). Videoconference intervention for distance caregivers of patients with cancer: A randomized controlled trial. JCO oncology practice, 17(1), e26-e35.
    • Wang, J., Fu, Y., Lou, V., Tan, S. Y., & Chui, E. (2021). A systematic review of factors influencing attitudes towards and intention to use the long-distance caregiving technologies for older adults. International journal of medical informatics, 153, 104536.

    Home Safety

    • Gewandter, J. S., Fan, L., Magnuson, A., Mustian, K., Peppone, L., Heckler, C., ... & Mohile, S. G. (2013). Falls and functional impairments in cancer survivors with chemotherapy-induced peripheral neuropathy (CIPN): A University of Rochester CCOP study. Supportive Care in Cancer, 21(7), 2059-2066.
    • Huff, C. (2020). Oral chemotherapy: A home safety educational framework for healthcare providers, patients, and caregivers. Clinical Journal of Oncology Nursing, 24(1), 22-30. doi: 10.1188/20.CJON.22-30
    • Kuriya, M., Yennurajalingam, S., de la Cruz, M. G., Wei, W., Palla, S., & Bruera, E. (2015). Frequency and factors associated with falls in patients with advanced cancer presenting to an outpatient supportive care clinic. Palliative and Supportive Care, 13(02), 223-227.

    Loneliness & Isolation

    • Hebdon, M., Badger, T. A., Segrin, C., & Pasvogel, A. (2021). Social support and healthcare utilization of caregivers of Latinas with breast cancer. Supportive Care in Cancer, 29(8), 4395–4404. https://doi.org./10.1007/s00520-020-05983-z
    • Li, L., Wister, A.V., Mitchell, B. (2020). Social isolation among spousal and adult-child caregivers: Findings from the Canadian longitudinal study on aging. Journal of Gerontology: Series B, 76(7), 1415-1429. doi: 10.1093/geronb/gbaa197. Moss, K.O., Kurzawa, C., Daly, B., Prince-Paul, M. (2019). Identifying and addressing family caregiver anxiety. Journal of Hospice and Palliative Nursing, 21(1), 14-20. doi: 10.1097/NJH.0000000000000489.
    • Pohl, J.S., Bell, J.F., Tancredi, D.J., Woods, N.F. (2022). Social isolation and health among family caregivers of older adults: Less community participation may indicate poor self-reported health. Health and Social Care Community, 30(6), e6175-e6184. doi: 10.1111/hsc.14054.
    • Rokach A, Findler L, Chin J, Lev S, Kollender Y. (2013). Cancer patients, their caregivers and coping with loneliness. Psychol Health Med, 18(2), 135-144. Thana, K., Lehto, R., Sikorskii, A., Wyatt, G. (2021). Informal caregiver burden for solid tumour cancer patients: a review and future directions. Psychology & Health, 36(12), 1514–1535. https://doi.org/10.1080/08870446.2020.1867136

    Making a Care Plan

    Medication Management

    • Polenick, C.A., Stanz, S.D., Leggett, A.N., Maust, D.T., Hodgson, N.A., & Kales, H.C. (2020). Stressors and resources related to medication management: Associations with spousal caregivers’ role overload. The Gerontologist, 60(1), 165–173. https://doi.org/10.1093/geront/gny130
    • Whitman, A., Fitch, E., & Nightingale, G. (2023). The role of oncology pharmacists and comprehensive medication reconciliation in informing treatment plans for older adults with cancer and downstream outcomes. Current Opinion in Supportive and Palliative Care, 17(1), 3-7. DOI 10.1097/SPC.0000000000000634
    • Schumacher, K.L., Clark, V.L.P., West, C.M., Dodd, M.J., Rabow, M.W., & Miaskowski, C. (2014). Pain medication management processes used by oncology outpatients and family caregivers part II: Home and lifestyle contexts. Journal of Pain and Symptom Management, 48(5), 784-796.
    • Latter, S., Hopkinson, J.B., Richardson, A., Hughes, J.A., Lowson, E., & Edwards, D. (2016). How can we help family carers manage pain medicines for patients with advanced cancer? A systematic review of intervention studies. BMJ Supportive & Palliative Care, 6(3), 263-275. DOI 10.1136/bmjspcare-2015-000958

    Money

    • Coumoundouros, C., Ould Brahim, L., Lambert, S. D., & McCusker, J. (2019). The direct and indirect financial costs of informal cancer care: A scoping review. Health & Social Care in the Community, 27(5), e622-e636.
    • Iragorri, N., de Oliveira, C., Fitzgerald, N., Essue, B. (2021). The out-of-pocket cost burden of cancer care – a systematic literature review. Current Oncology, 28(2), 1216-4128. doi: 10.3390/curroncol28020117
    • Nightingale, C.L., Canzona, M.R., Danhauer, S.C., Reeve, B.B., Howard, D.S., Tucker-Seeley, R.D., Golden, S.L.S., Little-Greene, D., Roth, M.E., Victorson, D.E., Salsman, J.M. (2022). Financial burden for caregivers of adolescents and young adults with cancer. Psychooncology, 31(8), 1354-1364. doi: 10.1002/pon.5937

    Sleep Problems

    • Chen, Q., Terhorst, L., Lowery-Allison, A., Cheng, H., Tsung, A., Layshock, M., ... & Steel, J. L. (2020). Sleep problems in advanced cancer patients and their caregivers: Who is disturbing whom? Journal of Behavioral Medicine, 43, 614-622.
    • Toygar, I., Yeşilbalkan, Ö.U., Malseven, Y.G., & Sönmez, E. (2020). Effect of reflexology on anxiety and sleep of informal cancer caregiver: Randomized controlled trial. Complementary Therapies in Clinical Practice, 39, 101143.
    • Ravyts, S.G., Sannes, T.S., Dzierzewski, J.M., Zhou, E.S., Brewer, B.W., Natvig, C., & Laudenslager, M.L. (2021). Check your sleep before you start: A secondary analysis of a stress management intervention for caregivers of stem cell transplant patients. Psycho‐Oncology, 30(6), 936-945.

    Staying Healthy

    Talking with Family & Friends

    • Tiete, J., Delvaux, N., Liénard, A., & Razavi, D. (2021). Efficacy of a dyadic intervention to improve communication between patients with cancer and their caregivers: A randomized pilot trial. Patient education and counseling, 104(3), 563–570. https://doi.org/10.1016/j.pec.2020.08.024
    • Van der Wel, M., van der Smissend, D., Dierickx, S., Cohen, J., Hudson, P., De Velminck, A., … & Witkamp, E. (2022). Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries. Support Care Cancer, 30(12), 9763-9770. https://doi.org/10.1007/s00520-022-07391-x
    • Zhou, J., Chen, X., Wang, Z., & Li, Q. (2023). Couple-based communication interventions for cancer patient-spousal caregiver dyads’ psychosocial adaptation to cancer: A systematic review. Healthcare, 11(236), 236. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9858755/ 

    Talking with Healthcare Providers

    • American Heart Association. (2021). Communication Tips for Caregivers. https://www.heart.org/en/health-topics/caregiver-support/communication-…
    • Smith, P. D., Martin, B., Chewning, B., Hafez, S., Leege, E., Renken, J., & Smedley Ramos, R. (2018). Improving health care communication for caregivers: A pilot study. Gerontology & geriatrics education, 39(4), 433–444. https://doi.org/10.1080/02701960.2016.1188810
    • 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 Care, 38(2):147-153. doi: 10.1177/1049909120935371

    Transportation

    • Schwartz, A.J. & Jenkins, C.L. (2020). Barriers and facilitators to cancer treatment adherence for older Rural African Americans: Understanding the experience from the view of patients and their caregivers. Journal of Family Social Work, 23(1), 20-34.
    • Transportation: What caregivers need to know. (2023). AARP website. Available at: https://www.aarp.org/caregiving/home-care/info-2020/transportation-serv…

    Work

    • Longacre, M.L., Weber-Raley, L., & Kent, E.E. (2021). Cancer caregiving while employed: Caregiving roles, employment adjustments, employer assistance, and preferences for support. Journal of Cancer Education, 36(5), 920–932. https://doi.org/10.1007/s13187-019-01674-4
    • Xiang, E., Guzman, P., Mims, M., & Badr, H. (2022). Balancing work and cancer care: Challenges faced by employed informal caregivers. Cancers, 14(17), 4146. DOI: 10.3390/cancers14174146
    • U.S. Department of Labor. (2023). Family and Medical Leave (FMLA). https://www.dol.gov/general/topic/benefits-leave/fmla