Care for the Cancer Caregiver


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Allison J. Applebaum, PhD

Allison J. Applebaum, PhD

Providing care to patients with cancer can be overwhelming, and caregivers are at risk for physical and psychological distress, which can negatively impact their own health. Over the past decade, supporting caregiver well-being has gained prominence as a national health-care issue. In this article, Dr. Applebaum emphasizes the importance of extending psychosocial support for caregiver well-being and highlights the evidence base for helpful interventions, which include cognitive behavioral therapy, yoga, and meditation.

Overview

CAREGIVERS, WHO may be relatives, friends, or partners who have a significant relationship with and provide assistance (ie, physical, emotional) to patients with cancer,1 are an essential extension of the health-care team. Today’s shorter hospital stays and shift toward increased outpatient care have placed a significant burden of responsibility on caregivers, many of whom have little to no preparation for this role. Rapid advances in cancer care have improved our ability to extend lives and enhance survival, and in many cases, cancer is now a chronic rather than abruptly life-limiting illness. These trends have significantly increased the burden on caregivers and their needs have substantially intensified.

“Today’s shorter hospital stays and shift toward increased outpatient care have placed a significant burden of responsibility on caregivers, many of whom have little to no preparation for this role.”
— Allison J. Applebaum, PhD

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Indeed, the number of individuals currently providing care for patients with cancer is startling: recent U.S. national estimates of cancer caregivers range from 2.8 million2 to 6.1 million adult individuals,3 with such caregivers providing care on average for 32.9 hours per week. These demands come at a significant financial cost: time costs per year of informal cancer caregiving may be as high as $73,000,4 and approximately 25% of caregivers make extended employment changes to accommodate their caregiving responsibilities.5

Negative Effects of Caregiving

THIS UNCOMPENSATED care involves significant time and energy as well as requires performing tasks that are physically, emotionally, socially, and existentially demanding. Indeed, caregivers are at risk for psychological (eg, anxiety, depression, and hopelessness)6 and physical (eg, increased mortality, cardiovascular disease, poor immune functioning, and sleep difficulties)7 complications. Although some studies of caregivers reported comparable rates of depression and anxiety to those of patients for whom they provide care,8-10 others have shown rates that surpass those of patients.11

Jun J. Mao, MD, MSCE

Jun J. Mao, MD, MSCE

For example, rates of depression between 12% and 59% and anxiety between 30% and 50%12,13 have been reported in samples of caregivers, in comparison to those of depression between 10% and 25%14 and between 19% and 34%15 in the patient population. Additionally, between 40% and 76% of cancer caregivers reported clinically significant symptoms of insomnia,16,17 which negatively affect their mental and physical health, are frequently chronic, and may impair the normal grieving process among bereaved caregivers.18 These symptoms can increase the risk for chronic illness in caregivers, including cardiovascular disease and cancer.

GUEST EDITOR

Integrative Oncology is guest edited by Jun J. Mao, MD, MSCE, Laurance S. Rockefeller Chair in Integrative Medicine and Chief, Integrative Medicine Service, Memorial Sloan Kettering Cancer Center, New York.

Furthermore, caregiver burden has the potential to negatively impact the quality of care provided to patients and subsequently their health outcomes.19-21 For example, depressed mood and higher anxiety among caregivers have been associated with patient distress21 and increased use of aggressive and unnecessary treatments toward the end of life.22,23 As such, this chronic, untreated burden experienced by caregivers not only increases their chances of becoming the next generation of patients, but it may generally add further burden to health-care expenditures.

Supporting Caregivers

CAREGIVERS OF patients with cancer are therefore in great need of psychosocial support. Thankfully, the state of the science of cancer caregiver intervention research is no longer in its infancy. There is strong and growing evidence for the efficacy and effectiveness of empirically supported treatments—psychoeducation,24,25 cognitive behavioral therapy,26,27 and problem-solving therapy28,29—to address various domains of caregiver burden and unmet needs. Such interventions have been shown to improve caregivers’ skills, self-efficacy, and confidence in their role as well as to help them navigate the prolonged and often intensifying challenges experienced across the caregiving trajectory. Indeed, short-term interventions can afford caregivers the skills necessary to face the challenges of caregiving and protect them from the negative outcomes described previously.

There is also a growing body of evidence for the benefits of mind-body therapies, such as yoga and meditation, on the symptoms of depression, anxiety, insomnia, and overall health-related quality of life of caregivers.30-32 Additionally, many support programs are now capitalizing on the rapidly advancing telehealth technologies to deliver interventions to diverse groups of caregivers across the country and the world.33

First Step: Screen for Caregiver Distress

TO IDENTIFY caregivers in need and route them to appropriate supportive services, however, it is necessary first to screen for distress. For patients with cancer, distress screening has become a standard of care, but routine and comprehensive distress screening for caregivers has yet to be implemented.34 Caregiver-focused distress screening programs have the potential to improve the quality of care for all those affected by cancer.

“Caregiver-focused distress screening programs have the potential to improve the quality of care for all those affected by cancer.”
— Allison J. Applebaum, PhD

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It is also necessary for individuals on the front lines—the various medical professionals who come into contact with families in inpatient and outpatient settings—to recognize the signs of caregiver burden and understand how to route caregivers to support in their unique systems. More broadly, as health-care professionals supporting families facing cancer, we must press strongly and advocate for policies that broadly acknowledge caregiver burden as a national health-care issue as well as continue to encourage a paradigm shift from patient-centered to family-centered care. ■

DISCLOSURE: Dr. Applebaum reported no conflicts of interest.

REFERENCES

1. National Alliance for Caregiving: Caregiving in the US. Washington, DC: National Alliance for Caregiving and the AARP. 2004. Available at www.aarp.org/relationships/caregiving/ info-2004/us_caregiving.html. Accessed Augsut 16, 2018.

2. National Alliance for Caregiving: Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. 2016. Availabe at www.caregiving.org/wp-content/ uploads/2016/06/CancerCaregivingReport_FINAL_June-17- 2016.pdf. Accessed August 16, 2018.

3. National Cancer Institute: Health Information National Trends Survey 5, Cycle 1. 2017. Available at https://hints.cancer.gov/data/survey-instruments.aspx. Accessed August 30, 2018.

4. Yabroff KR, Kim Y: Time costs associated with informal caregiving for cancer survivors. Cancer 115:4362-4373, 2009.

5. de Moor JS, Dowling EC, Ekwueme DU, et al: Employment implications of informal cancer caregiving. J Cancer Surviv 11:48-57, 2017.

6. Dumont S, Turgeon J, Allard P, et al: Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. J Palliat Med 9:912-921, 2006.

7. Rohleder N, Marin TJ, Ma R, et al: Biologic cost of caring for a cancer patient: Dysregulation of pro- and anti-inflammatory signaling pathways. J Clin Oncol 27:2909-2915, 2009.

8. Cliff A, MacDonagh R: Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJU Int 86:834-839, 2000.

9. Braun M, Mikulincer M, Rydall A, et al: Hidden morbidity in cancer: Spouse caregivers. J Clin Oncol 25:4829-4834, 2007.

10. Rivera HR: Depression symptoms in cancer caregivers. Clin J Oncol Nurs 13:195-202, 2009.

11. McLean LM, Walton T, Matthew A, et al: Examination of couples’ attachment security in relation to depression and hopelessness in maritally distressed patients facing end-stage cancer and their spouse caregivers: A buffer or facilitator of psychosocial distress? Support Care Cancer 19:1539-1548, 2011.

12. Grunfeld E, Coyle D, Whelan T, et al: Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170:1795-1801, 2004.

13. Hauser JM, Kramer BJ: Family caregivers in palliative care. Clin Geriatr Med 20:671-688, 2004.

14. Pirl WF: Evidence report on the occurrence, assessment, and treatment of depression in cancer patients. J Natl Cancer Inst Monogr 32-39, 2004.

15. Traeger L, Greer JA, Fernandez-Robles C, et al: Evidence-based treatment of anxiety in patients with cancer. J Clin Oncol 30:1197-1205, 2012.

16. Lee K-C, Yiin J-J, Lu S-H, et al: The burden of caregiving and sleep disturbance among family caregivers of advanced cancer patients. Cancer Nurs 38:E10-E18, 2015.

17. Morris BA, Thorndike FP, Ritterband LM, et al: Sleep disturbance in cancer patients and caregivers who contact telephone-based help services. Support Care Cancer 23:1113- 1120, 2015.

18. Shaffer K, Carter P, Garland S, et al: CBT for insomnia for caregivers, in Applebaum AJ (ed): Cancer Caregivers. New York, NY; Oxford University Press. In press.

19. Boele FW, Given CW, Given BA, et al: Family caregivers’ level of mastery predicts survival of patients with glioblastoma: A preliminary report. Cancer 123:832-840, 2017.

20. Houts PS, Nezu AM, Nezu CM, et al: The prepared family caregiver: A problem-solving approach to family caregiver education. Patient Educ Couns 27:63-73, 1996.

21. Litzelman K, Yabroff KR: How are spousal depressed mood, distress, and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample. Cancer Epidemiol Biomarkers Prev 24:969- 977, 2015.

22. Tsai CF, Lee YT, Lee WJ, et al: Depression of family caregivers is associated with disagreements on life-sustaining preferences for treating patients with dementia. PLoS One 10:e0133711, 2015.

23. Johnson S, Butow P, Kerridge I, et al: Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology 25:362-386, 2016.

24. Hendrix CC, Bailey DE, Steinhauser KE, et al: Effects of enhanced caregiver training program on cancer caregiver’s self-efficacy, preparedness, and psychological well-being. Support Care Cancer 24:327-336, 2016.

25. Northouse L, Schafenacker A, Barr KL, et al: A tailored web-based psychoeducational intervention for cancer patients and their family caregivers. Cancer Nurs 37:321-330, 2014.

26. Cohen M, Kuten A: Cognitive-behavior group intervention for relatives of cancer patients: A controlled study. J Psychosom Res 61:187-196, 2006.

27. O’Toole MS, Zachariae R, Renna ME, et al: Cognitive behavioral therapies for informal caregivers of patients with cancer and cancer survivors: A systematic review and meta-analysis. Psychooncology 26:428-437, 2017.

28. Sherwood PR, Given BA, Given CW, et al: The impact of a problem-solving intervention on increasing caregiver assistance and improving caregiver health. Support Care Cancer 20:1937-1947, 2012.

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

30. Dharmawardene M, Givens J, Wachholtz A, et al: A systematic review and meta-analysis of meditative interventions for informal caregivers and health professionals. BMJ Support Palliat Care 6:160-169, 2016.

31. Lopez G, Chaoul A, Powers-James C, et al: A pragmatic evaluation of symptom distress after group meditation for cancer patients and caregivers: A preliminary report. J Pain Symptom Manage 55:1321-1326, 2018.

32. Milbury K, Mallaiah S, Lopez G, et al: Vivekananda yoga program for patients with advanced lung cancer and their family caregivers. Integr Cancer Ther 14:446-451, 2015.

33. Marzorati C, Renzi C, Russell-Edu SW, et al: Telemedicine use among caregivers of cancer patients: Systematic review. J Med Internet Res 20:e223, 2018.

34. Lambert SD, Jones BL, Girgis A, et al: Distressed partners and caregivers do not recover easily: Adjustment trajectories among partners and caregivers of cancer survivors. Ann Behav Med 44:225-235, 2012.


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