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Caregiver Support Strategies: Why Should We Care?

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Supportive Care Strategies

Abstract

Informal caregivers are vital members of the comprehensive care team for hematopoietic cell transplant (HCT) patients. Without the identification and presence of caregivers, most if not all transplant centers would not be able to provide their services for patients. Caregivers of this patient population represent a unique entity with under-recognized challenges and long-term health and economic obstacles that require recognition, discussion, and support. In this chapter, we discuss the role of the HCT patients and caregivers; their health challenges that are compounded by this role, and both the social and economic debt that the patient and caregiver dyad experience. Furthermore, the chapter guides the options available for caregiver support.

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References

  • AARP (2015) Report caregiving in the U.S. 2015. http://www.caregiving.org. Accessed 28 Mar 2017

  • Beattie S, Lebel S (2011) The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psycho-Oncology 20(11):1137–1150

    Article  PubMed  Google Scholar 

  • Bevans M, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4):398–403

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Bevans M, Wehrlen L, Castro K et al (2014) A problem-solving education intervention in caregivers and patients during allogeneic hematopoietic stem cell transplantation. J Health Psychol 19(5):602–617

    Article  PubMed  Google Scholar 

  • Bishop MM, Beaumont JL, Hahn EA et al (2007) Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. J Clin Oncol 25(11):1403–1411

    Article  PubMed  Google Scholar 

  • Boyle D, Blodgett L, Gnesdiloff S et al (2000) Caregiver quality of life after autologous bone marrow transplantation. Cancer Nurs 23(3):193–203. quiz 204-195

    Article  CAS  PubMed  Google Scholar 

  • Bucher JA, Loscalzo M, Zabora J, Houts PS, Hooker C, BrintzenhofeSzoc K (2001) Problem-solving cancer care education for patients and caregivers. Cancer Pract 9(2):66–70

    Article  CAS  PubMed  Google Scholar 

  • Deniz H, Inci F (2015) The burden of care and quality of life of caregivers of leukemia and lymphoma patients following peripheric stem cell transplantation. J Psychosoc Oncol 33(3):250–262

    Article  PubMed  Google Scholar 

  • Denzen EM, Thao V, Hahn T et al (2016) Financial impact of allogeneic hematopoietic cell transplantation on patients and families over 2 years: results from a multicenter pilot study. Bone Marrow Transplant 51(9):1233–1240

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Dionne-Odom JN, Azuero A, Lyons KD et al (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. J Clin Oncol 33(13):1446–1452

    Article  PubMed  PubMed Central  Google Scholar 

  • Dionne-Odom JN, Hull JG, Martin MY et al (2016) Associations between advanced cancer patients’ survival and family caregiver presence and burden. Cancer Med 5(5):853–862

    Article  PubMed  PubMed Central  Google Scholar 

  • Eldredge DH, Nail LM, Maziarz RT, Hansen LK, Ewing D, Archbold PG (2006) Explaining family caregiver role strain following autologous blood and marrow transplantation. J Psychosoc Oncol 24(3):53–74

    Article  PubMed  Google Scholar 

  • El-Jawahri AR, Traeger LN, Kuzmuk K et al (2015) Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation. Cancer 121(6):951–959

    Article  PubMed  Google Scholar 

  • Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL (2000) Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med 132(6):451–459

    Article  CAS  PubMed  Google Scholar 

  • Family Caregiver Alliance (1996–2016). www.caregiver.org. Accessed 29 Mar 2017

  • Fife BL, Monahan PO, Abonour R, Wood LL, Stump TE (2009) Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplant 43(12):959–966

    Article  CAS  PubMed  Google Scholar 

  • Foxall MJ, Gaston-Johansson F (1996) Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. J Adv Nurs 24(5):915–923

    Article  CAS  PubMed  Google Scholar 

  • Frey P, Stinson T, Siston A et al (2002) Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplant 30(11):741–748

    Article  CAS  PubMed  Google Scholar 

  • Gemmill R, Cooke L, Williams AC, Grant M (2011) Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research. Cancer Nurs 34(6):E13–E21

    Article  PubMed  PubMed Central  Google Scholar 

  • Golant M, Haskins NV (2008) “Other cancer survivors”: the impact on family and caregivers. Cancer J (Sudbury, Mass.) 14(6):420–424

    Article  Google Scholar 

  • Gouin JP, Hantsoo L, Kiecolt-Glaser JK (2008) Immune dysregulation and chronic stress among older adults: a review. Neuroimmunomodulation 15(4–6):251–259

    Article  CAS  PubMed  Google Scholar 

  • Grant M, Cooke L, Bhatia S, Forman S (2005) Discharge and unscheduled readmissions of adult patients undergoing hematopoietic stem cell transplantation: implications for developing nursing interventions. Oncol Nurs Forum 32(1):E1–E8

    Article  PubMed  Google Scholar 

  • Jo S, Brazil K, Lohfeld L, Willison K (2007) Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliat Support Care 5(1):11–17

    Article  PubMed  Google Scholar 

  • Juster RP, McEwen BS, Lupien SJ (2010) Allostatic load biomarkers of chronic stress and impact on health and cognition. Neurosci Biobehav Rev 35(1):2–16

    Article  PubMed  Google Scholar 

  • Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW (1963) Studies of illness in the aged: the index of ADL: a standardized measure of biological and psychosocial function. JAMA 185(12):914–919

    Article  CAS  PubMed  Google Scholar 

  • Keogh F, O'Riordan J, McNamara C, Duggan C, McCann SR (1998) Psychosocial adaptation of patients and families following bone marrow transplantation: a prospective, longitudinal study. Bone Marrow Transplant 22(9):905–911

    Article  CAS  PubMed  Google Scholar 

  • Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J (2016) Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study. BMC Palliat Care 15:4

    Article  PubMed  PubMed Central  Google Scholar 

  • Kurtz ME, Kurtz JC, Stommel M, Given CW, Given B (2001) Physical functioning and depression among older persons with cancer. Cancer Pract 9(1):11–18

    Article  CAS  PubMed  Google Scholar 

  • Langer S, Abrams J, Syrjala K (2003) Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: a prospective, longitudinal investigation. Psycho-Oncology 12(3):239–253

    Article  PubMed  Google Scholar 

  • Langer SL, Yi JC, Storer BE, Syrjala KL (2010) Marital adjustment, satisfaction and dissolution among hematopoietic stem cell transplant patients and spouses: a prospective, five-year longitudinal investigation. Psycho-Oncology 19(2):190–200

    Article  PubMed  PubMed Central  Google Scholar 

  • Lee S, Colditz GA, Berkman LF, Kawachi I (2003) Caregiving and risk of coronary heart disease in U.S. women: a prospective study. Am J Prev Med 24(2):113–119

    Article  PubMed  Google Scholar 

  • Lucini D, Cannone V, Malacarne M et al (2008) Evidence of autonomic dysregulation in otherwise healthy cancer caregivers: a possible link with health hazard. Eur J Cancer (Oxford, England: 1990) 44(16):2437–2443

    Article  Google Scholar 

  • Majhail NS, Rizzo JD, Hahn T et al (2013) Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation. Bone Marrow Transplant 48(6):865–871

    Article  CAS  PubMed  Google Scholar 

  • McMillan SC, Small BJ, Weitzner M et al (2006) Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer 106(1):214–222

    Article  PubMed  Google Scholar 

  • Mittelman M (2005) Taking care of the caregivers. Curr Opin Psychiatry 18(6):633–639

    Article  PubMed  Google Scholar 

  • Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA (1998) Cancer and caregiving: the impact on the caregiver’s health. Psycho-Oncology 7(1):3–13

    Article  CAS  PubMed  Google Scholar 

  • Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91(5):1029–1039

    Article  CAS  PubMed  Google Scholar 

  • Noerskov KH, Schjodt I, Syrjala KL, Jarden M (2016) Sexual function 1-year after allogeneic hematopoietic stem cell transplantation. Bone Marrow Transplant 51(6):833–840

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Norskov KH, Schmidt M, Jarden M (2015) Patients’ experience of sexuality 1-year after allogeneic haematopoietic stem cell transplantation. Eur J Oncol Nurs 19(4):419–426

    Article  PubMed  Google Scholar 

  • Otis-Green S, Juarez G (2012) Enhancing the social well-being of family caregivers. Semin Oncol Nurs 28(4):246–255

    Article  PubMed  PubMed Central  Google Scholar 

  • Rabow MW, Hauser JM, Adams J (2004) Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA 291(4):483–491

    Article  CAS  PubMed  Google Scholar 

  • Rainville C, Skufca L, Mehegan L (2016) Family caregiving and out-of-pocket costs: 2016 report. http://www.aarp.org/home-family/caregiving/info-2016/caregiving-out-of-pocket-cost-report.html. Accessed 28 Mar 2017

  • Roepke SK, Mausbach BT, Patterson TL et al (2011) Effects of Alzheimer caregiving on allostatic load. J Health Psychol 16(1):58–69

    Article  PubMed  Google Scholar 

  • Ross A, Yang L, Klagholz SD, Wehrlen L, Bevans MF (2016) The relationship of health behaviors with sleep and fatigue in transplant caregivers. Psycho-Oncology 25(5):506–512

    Article  CAS  PubMed  Google Scholar 

  • Sabo B, McLeod D, Couban S (2013) The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora's box. Cancer Nurs 36(1):29–40

    Article  PubMed  Google Scholar 

  • Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215–2219

    Article  CAS  PubMed  Google Scholar 

  • Schulz R, Sherwood PR (2008) Physical and mental health effects of family caregiving. Am J Nurs 108(9 Suppl):23–27; quiz 27

    Article  PubMed  PubMed Central  Google Scholar 

  • Schumacher KL, Stewart BJ, Archbold PG (2007) Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nurs Res 56(6):425–433

    Article  PubMed  Google Scholar 

  • Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S (2008) Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncol Nurs Forum 35(1):49–56

    Article  PubMed  Google Scholar 

  • Sherwood PR, Given BA, Donovan H et al (2008) Guiding research in family care: a new approach to oncology caregiving. Psycho-Oncology 17(10):986–996

    Article  PubMed  Google Scholar 

  • Siston AK, List MA, Daugherty CK et al (2001) Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation. Bone Marrow Transplant 27(11):1181–1188

    Article  CAS  PubMed  Google Scholar 

  • Sorensen S, Pinquart M, Duberstein P (2002) How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist 42(3):356–372

    Article  PubMed  Google Scholar 

  • Stetz KM, McDonald JC, Compton K (1996) Needs and experiences of family caregivers during marrow transplantation. Oncol Nurs Forum 23(9):1422–1427

    CAS  PubMed  Google Scholar 

  • Syrjala KL, Langer SL, Abrams JR et al (2004) Recovery and long-term function after hematopoietic cell transplantation for leukemia or lymphoma. JAMA 291(19):2335–2343

    Article  CAS  PubMed  Google Scholar 

  • Wilson ME, Eilers J, Heermann JA, Million R (2009) The experience of spouses as informal caregivers for recipients of hematopoietic stem cell transplants. Cancer Nurs 32(3):E15–E23

    Article  PubMed  Google Scholar 

  • Zabora JR, Smith ED, Baker F, Wingard JR, Curbow B (1992) The family. J Psychosoc Oncol 10(1):35–46

    Article  Google Scholar 

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Correspondence to Laura Finn .

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del Toro, A., Finn, L. (2020). Caregiver Support Strategies: Why Should We Care?. In: Finn, L., Roche Green, A.R. (eds) Supportive Care Strategies. Advances and Controversies in Hematopoietic Transplantation and Cell Therapy. Springer, Cham. https://doi.org/10.1007/978-3-319-59014-1_12

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  • DOI: https://doi.org/10.1007/978-3-319-59014-1_12

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  • Online ISBN: 978-3-319-59014-1

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