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Research Article

“I don’t have a choice but to keep getting up and doing the things that protect her”: The informal caregiver’s adaptation to the cancer diagnosis

, PhDORCID Icon, , MSORCID Icon & , PhD, ACNP-BC, ACHPNORCID Icon

References

  • Leukemia and Lymphoma Society. Facts and statistics overview; 2021. https://www.lls.org/facts-and-statistics/facts-and-statistics-overview. Accessed April 10, 2023.
  • Ehooman F, Biard L, Lemiale V, et al. Long-term health-related quality of life of critically ill patients with haematological malignancies: a prospective observational multicenter study. Ann Intensive Care. 2019;9(1):2. doi:10.1186/s13613-018-0478-3
  • Noone AM, Howlader N, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto, A, Lewis DR, Chen HS, Feuer EJ, Cronin KA, eds. SEER Cancer Statistics Review, 1975–2015. Bethesda, MD: National Cancer Institute; 2018. https://seer.cancer.gov/csr/1975_2015/. Based on November 2017 SEER data submission, posted to the SEER web site, April 2018.
  • Albrecht TA, Boyiadzis M, Elswick RK, Starkweather A, Rosenzweig M. Symptom management and psychosocial needs of adults with acute myeloid leukemia during induction treatment: A pilot study. Cancer Nurs. 2017;40(6):E31–E38. doi:10.1097/NCC.0000000000000428
  • Bevans MF, Ross A, Wehrlen L, et al. Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation. Stress. 2016;19(2):175–184. doi:10.3109/10253890.2016.1146670
  • Ferrell BR, Kravitz K. Cancer care: Supporting underserved and financially burdened family caregivers. J Adv Pract Oncol. 2017;8(5):494–500. Epub 2017/07/01.
  • Reblin M, Small B, Jim H, Weimer J, Sherwood P. Mediating burden and stress over time: Caregivers of patients with primary brain tumor. Psychooncology. 2018;27(2):607–612. Epub 2017/08/13. doi:10.1002/pon.4527
  • Shaffer KM, Kim Y, Carver CS, Cannady RS. Effects of caregiving status and changes in depressive symptoms on development of physical morbidity among long-term cancer caregivers. Health Psychol. 2017;36(8):770–778. doi:10.1037/hea0000528supp (Supplemental). PubMed PMID: 2017-27047-001.
  • Yucel E, Zhang S, Panjabi S. Health-related and economic burden among family caregivers of patients with acute myeloid leukemia or hematological malignancies. Adv Ther. 2021;38(10):5002–5024. doi:10.1007/s12325-021-01872-x
  • Molassiotis A, Wang M. Understanding and supporting informal cancer caregivers. Curr Treat Options Oncol. 2022;23(4):494–513. doi:10.1007/s11864-022-00955-3
  • Streck BP, Wardell DW, Derrick J, Wood GL. Physical and psychological health interdependence among dyads in hematological cancer. Cancer Nurs. 2021;44(6):E531–E539. doi:10.1097/NCC.0000000000000943
  • Nielsen IH, Piil K, Grønbæk K, Kjeldsen L, Jarden M. Experiences and needs of caregivers of adult patients with hematologic malignancies during treatment: a qualitative longitudinal study. Cancer Nurs. 2022;45(5):E801–E809. doi:10.1097/NCC.0000000000001054
  • Hoppe R. Impact of a hematologic malignancy diagnosis and treatment on patients and their family caregivers. Oncol Nurs Forum. 2022;49(5):445–453.
  • Albrecht TA, Hoppe R, Winter MA. How caregivers cope and adapt when a family member is diagnosed with a hematologic malignancy: informing supportive care needs. Cancer Nurs. 2022;45(6):E849–E855. doi:10.1097/NCC.0000000000001063
  • Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33(1):77–84. doi:10.1002/nur.20362
  • Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405. doi:10.1111/nhs.12048
  • Fletcher BS, Miaskowski C, Given B, Schumacher K. The cancer family caregiving experience: An updated and expanded conceptual model. Eur J Oncol Nurs. 2012;16(4):387–398. doi:10.1016/j.ejon.2011.09.001
  • Lincoln Y, Guba E. Naturalistic Inquiry. Newbury Park, California: Sage; 1985.
  • Hebdon MCT, Coombs LA, Reed P, Crane TE, Badger TA. Self-efficacy in caregivers of adults diagnosed with cancer: An integrative review. Eur J Oncol Nurs. 2021;52:101933. doi:10.1016/j.ejon.2021.101933
  • Capodanno I, Rocchi M, Prandi R, et al. Caregivers of patients with hematological malignancies within home care: a phenomenological study. Int J Environ Res Public Health. 2020;17(11):4036. doi:10.3390/ijerph17114036
  • Ernst J, Hinz A, Niederwieser D, et al. Dyadic coping of patients with hematologic malignancies and their partners and its relation to quality of life–a longitudinal study. Leuk Lymphoma. 2017;58(3):655–665. doi:10.1080/10428194.2016.1194983
  • Serçe Ö, Günüşen NP. The interaction between hematological cancer patients and family caregivers and their life changes: a qualitative dyadic approach. Cancer Nurs. 2021;44(4):E201–E208. doi:10.1097/NCC.0000000000000800
  • Langer SL, Brown JD, Syrjala KL. Intrapersonal and interpersonal consequences of protective buffering among cancer patients and caregivers. Cancer. 2009;115(18 Suppl):4311–4325. doi:10.1002/cncr.24586
  • Bigi S, Ganfi V, Borelli E, et al. Perceptions of hope among bereaved caregivers of cancer patients who received early palliative care: a content and lexicographic analysis. Oncologist. 2022;27(2):e168–e175. doi:10.1093/oncolo/oyab027
  • Sabo B, McLeod D, Couban S. The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora’s box. Cancer Nurs. 2013;36(1):29–40. doi:10.1097/NCC.0b013e31824fe223
  • Dionne-Odom JN, Demark-Wahnefried W, Taylor RA, et al. The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer. 2017;25(8):2437–2444. doi:10.1007/s00520-017-3650-7
  • Husted Nielsen I, Piil K, Tolver A, Grønbæk K, Kjeldsen L, Jarden M. Family caregiver ambassador support for caregivers of patients with newly diagnosed hematological cancer: a feasibility study. Support Care Cancer. 2022;30(8):6923–6935. doi:10.1007/s00520-022-07089-0
  • Fisher CL, Mullis MD, Kastrinos A, et al. “Home wasn’t really home anymore”: Understanding caregivers’ perspectives of the impact of blood cancer caregiving on the family system. Support Care Cancer. 2021;29(6):3069–3076. doi:10.1007/s00520-020-05811-4
  • Kim Y, Mitchell HR, Ting A. Application of psychological theories on the role of gender in caregiving to psycho‐oncology research. Psychooncology. 2019;28(2):228–254. doi:10.1002/pon.4953
  • Ybema JF, Kuijer RG, Hagedoorn M, Buunk BP. Caregiver burnout among intimate partners of patients with a severe illness: An equity perspective. Personal Relat. 2002;9(1):73–88. doi:10.1111/1475-6811.00005
  • Walsh F. Normal Family Processes: Growing Diversity and Complexity. New York: Guilford Press; 2012.
  • Fisher CL, Wright KB, Hampton CN, et al. Blood cancer caregiving during COVID-19: understanding caregivers’ needs. Transl Behav Med. 2021;11(5):1187–1197. doi:10.1093/tbm/ibab021
  • Rood JAJ, Nauta IH, Witte BI, et al. Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not “one-size-fits-all.” Psychooncology. 2017;26(12):2040–2047. Epub 2017/03/07. doi:10.1002/pon.4414
  • Dionne-Odom J, Appelbaum A, Ornstein K, et al. Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology. 2018;27(3):969–976. doi:10.1002/pon.4603
  • Kayastha N, LeBlanc TW. Palliative care for patients with hematologic malignancies: are we meeting patients’ needs early enough? Expert Rev Hematol. 2022;15(9):813–820. doi:10.1080/17474086.2022.2121696

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