Skip to main content

Psychosocial Burden of Family Caregivers to Adults with Cancer

  • Chapter
  • First Online:
Psycho-Oncology

Part of the book series: Recent Results in Cancer Research ((RECENTCANCER,volume 197))

Abstract

A person living with cancer will potentially have some degree of physical, cognitive, and/or psychological impairment, periods of unemployment, financial concerns, social isolation, and existential questions, any or all of which can impact the family and friends who surround them. In our current era of healthcare, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers are essential partners with the healthcare team. The intricacies of the cancer family caregiver role and responsibilities are demanding and may lead to increased morbidity and mortality—in effect, the cancer family caregiver can become a second patient in need of care. This chapter discusses the psychosocial burden of family caregivers to adults with cancer, and includes information on caregiver mood disturbance and psychological impairment and some of the mutable factors that contribute to these states (i.e., sleep disturbance, decline in physical health, and restriction of activities), uncertainty, spiritual concerns, and caregiver witnessing. There is a discussion of the factors that influence the caregiving experience (caregiver characteristics, patient characteristics, and social supports). The chapter concludes with comments on the state of caregiver research.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 109.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  • Barry LC, Kasl SV, Prigerson HG (2002) Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry 10:447–457

    PubMed  Google Scholar 

  • Beesley VL, Price MA, Webb PM (2011) Loss of lifestyle: health behaviour and weight changes after becoming a caregiver of a family member diagnosed with ovarian cancer. Support Care Cancer 19:1949–1956

    Article  PubMed  Google Scholar 

  • Blum K, Sherman DW (2010) Understanding the experience of caregivers: a focus on transition. Semin Ocol Nurs 26:243–258

    Article  Google Scholar 

  • Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834

    Article  PubMed  Google Scholar 

  • Cameron J, Franche R, Cheung A, Stewart D (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94:521–527

    Article  PubMed  Google Scholar 

  • Carter P (2003) Family caregivers’ sleep loss and depression over time. Cancer Nurs 26:253–259

    Article  PubMed  Google Scholar 

  • Carter P, Chang B (2000) Sleep and depression in cancer caregivers. Cancer Nurs 23:410–415

    Article  PubMed  CAS  Google Scholar 

  • Carter P, Acton GJ (2006) Personality and coping: predictors of depression and sleep problems among caregivers of individuals who have cancer. J Gerontol Nurs 32:45–53

    PubMed  Google Scholar 

  • Colgrove LA, Kim Y, Thompson N (2007) The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Ann Behav Med 33:90–98

    Article  PubMed  Google Scholar 

  • Douglas S, Daly BJ (2012) The impact of patient quality of life and spirituality upon caregiver depression for those with advanced cancer. Palliat Support Care. doi:10.1017/S1478951512000570

    PubMed  Google Scholar 

  • Feinberg LF, Wolkwitz K, Goldstein C (2006) Ahead of the curve: emerging trends and practices in family caregiver support. AARP Public Policy Institute. http://assets.aarp.org/rgcenter/il/2006_09_caregiver.pdf. Accessed 20 April 2013

  • Fenix JB, Cherlin EJ, Prigerson HG, Johnson-Hurzeler R, Kasl SV, Bradley EH (2006) Religiousness and major depression among bereaved family caregivers: a 13-month follow-up study. J Palliat Care 22:286–292

    PubMed  CAS  Google Scholar 

  • Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31:1161–1169

    Article  PubMed  Google Scholar 

  • Gaugler JE, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine WF (2005) Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. Psychooncology 14:771–785

    Article  PubMed  Google Scholar 

  • Gibbins J, McCoubrie R, Kendrick AH, Senior-Smith G, Davies AN, Hanks GW (2009) Sleep-wake disturbances in patients with advanced cancer and their family carers. J Pain Symptom Manage 38:860–870

    Article  PubMed  Google Scholar 

  • Given B, Sherwood PR (2006) Family care for the older person with cancer. Semin Oncol Nurs 22:43–50

    Article  PubMed  Google Scholar 

  • Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, Rahbar M (2004) Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 31:1105–1117

    Article  PubMed  Google Scholar 

  • Goldstein M, Concato J, Fried T, Kasl S, Johnson-Hurzeler R, Bradley E (2004) Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 20:38–43

    PubMed  Google Scholar 

  • Grimm PM, Zawacki KL, Mock V, Krumm S, Frink BB (2000) Caregiver responses and needs: an ambulatory bone marrow transplantation. Cancer Pract 8:120–128

    Article  PubMed  CAS  Google Scholar 

  • Grov E, Dahl A, Moum T, Fossa S (2005) Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Annals Oncol 16:1185–1191

    Article  CAS  Google Scholar 

  • Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle C, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170:1795–1801

    Article  PubMed  Google Scholar 

  • Guay M, Parsons HA, Hui D, De la Cruz MG, Thorney S, Bruera E (2012) Spirituality, religiosity, and spiritual pain among caregivers of patients with advanced cancer. Am J Hosp Palliat Care. doi:10.1177/1049909112458030

    Google Scholar 

  • Hagedoorn M, Buunk BP, Kuijer RG, Wobbes T, Sanderman R (2000) Couples dealing with cancer: role and gender differences regarding psychological distress and quality of life. Psychooncology 9:232–242

    Article  PubMed  CAS  Google Scholar 

  • Harding R, Higginson I (2003) What is the best way to help caregivers in cancer and palliative care? a systematic literature review of interventions and their effectiveness. Palliat Med 17:63–74

    Article  PubMed  CAS  Google Scholar 

  • Hebert RS, Schulz R, Copeland VC, Arnold RM (2009) Preparing family caregivers for death and bereavement: insights from caregivers of terminally ill patients. J Pain Symptom Manage 37:3–12

    Article  PubMed  Google Scholar 

  • Hendrix CC, Abernethy A, Sloane R, Misuraca J, Moore J (2009) A pilot study on the influence of an individualized and experiential training on cancer caregiver’s self-efficacy in home care and symptom management. Home Health Nurse 27:271–278

    Article  Google Scholar 

  • Hodges J, Humphries G, MacFarlane G (2005) A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 60:1–12

    Article  PubMed  CAS  Google Scholar 

  • Hwang SS, Chang VT, Alejandro Y, Osenenko P, Davis C, Cogswell J, Srinivas S, Kasimis B (2003) Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a veterans affairs medical center. Palliat Support Care 1:319–329

    Article  PubMed  Google Scholar 

  • Kim Y, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psychooncology 15:795–804

    Article  PubMed  Google Scholar 

  • Kim Y, Carver CS (2007) Frequency and difficulty in caregiving among spouses of individuals with cancer: effects of adult attachment and gender. Psychooncology 12:714–723

    Article  Google Scholar 

  • Kim Y, Carver CS, Spillers RL, Crammer C, Zhou ES (2011) Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psychooncology 20:762–770

    Article  PubMed  Google Scholar 

  • Kim Y, Duberstin PR, Sorensen S (2005) Levels of depressive symptoms in spouses of people with lung cancer: effects of personality, social support, and caregiving burden. Psychosomatics 46:123–130

    Article  PubMed  Google Scholar 

  • Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112(11 Suppl):2556–2568

    Article  PubMed  Google Scholar 

  • Kurtz M, Kurtz J, Given C, Given B (2004) Depression and physical health among family caregivers of geriatric patients with cancer—a longitudinal view. Med Sci Monit 10:CR447–456

    Google Scholar 

  • Mako C, Gale K, Poppito SR (2006) Spiritual pain among patients with advanced cancer in palliative care. J Palliat Med 9:1106–1113

    Article  PubMed  Google Scholar 

  • Matthews BA (2003) Role and gender differences in cancer-related distress: a comparison of survivor and caregiver self-reports. Oncol Nurs Forum 30:493–499

    Article  PubMed  Google Scholar 

  • McCorkle R, Yost LS, Jepson C, Malone D, Baird S, Lusk E (1993) A cancer experience: relationship of patient psychosocial responses to care-giver burden over time. Psychooncology 2:21–32

    Article  Google Scholar 

  • Mellon S, Northouse LL, Weiss LK (2006) A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nurs 29:120–131

    Article  PubMed  Google Scholar 

  • Miaskowski C, Kragness L, Dibble S, Wallhagen M (1997) Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. J Pain Symptom Manage 13:138–147

    Article  PubMed  CAS  Google Scholar 

  • Moore AM, Gamblin TC, Geller DA, Youssef MN, Hoffman KE, Gemmell L, Likumahuwa SM, Bovbjerg DH, Marsland A, Steel JL (2011) A prospective study of posttraumatic growth as assessed by self-report and family caregiver in the context of advanced cancer. Psychooncology 20:479–487

    Article  PubMed  Google Scholar 

  • Murray SA, Kendall M, Boyd K, Grant L, Highet G, Sheikh A (2010) Archetypal trajectories of social, psychological, and spiritual well-being and distress in family care givers of patients with lung cancer. BMJ 304:c2581

    Article  Google Scholar 

  • Northouse L, Mood D, Kershaw T, Schafenacker A, Mellon S, Walker J, Galvin E, Decker V (2002) Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol 20:4050–4064

    Article  PubMed  Google Scholar 

  • Northouse L, Templin T, Mood D (2001) Couples’ adjustment to breast disease during the first year following diagnosis. J Behave Med 24:115–136

    Article  CAS  Google Scholar 

  • Northouse L, Williams AL, Given B, McCorkle R (2012) Psychosocial care for family caregivers of patients with cancer. J Clin Oncol 30:1227–1234

    Article  PubMed  Google Scholar 

  • O’Hara RE, Hull JG, Lyons KD, Bakitas M, Hegel MT, Li Z, Ahles TA (2010) Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliat Support Care 8:395–404

    Article  PubMed  Google Scholar 

  • Park SM, Kim YJ, Kim S, Choi JS, Lim HY, Choi YS, Hong YS, Kim SY, Heo DS, Kang KM, Jeong HS, Lee CG, Moon DH, Choi JY, Kong IS, Yun YH (2010) Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance. Support Care Cancer 18:699–706

    Article  PubMed  Google Scholar 

  • Pinquart M, Sorensen S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 18:250–267

    Article  PubMed  Google Scholar 

  • Seifert ML, Williams AL, Dowd MF, Chappel-Aiken L, McCorkle R (2008) The caregiving experience in a racially diverse sample of cancer family caregivers. Cancer Nurs 31:399–407

    Article  Google Scholar 

  • Sherwood PR, Given BA, Given CW, Schiffman RF, Murman DL, Lovely M, von Eye A, Rogers LR, Remer S (2006) Predictors of distress in caregivers of persons with a primary malignant brain tumor. Res Nurs Health 29:105–120

    Article  PubMed  Google Scholar 

  • Stajduhar KI, Martin WL, Barwich D, Fyles G (2008) Factors influencing family caregivers’ ability to cope with providing end-of-life cancer care at home. Cancer Nurs 31:77–85

    Article  PubMed  Google Scholar 

  • Stetz KM, Brown MA (1997) Taking care: caregiving to persons with cancer and AIDS. Cancer Nurs 20:12–22

    Article  PubMed  CAS  Google Scholar 

  • Temel JS, McCannon J, Greer JA, Jackson, VA, Ostler P, Pirl WF, Lynch TJ, Billings JA (2008) Aggressiveness of care in a prospective cohort of patients with advanced NSCLC. Cancer 113:826–833

    Google Scholar 

  • Travis LA, Lyness JM, Shields CG, King DA, Cox C (2004) Social support, depression, and functional disability in older adult primary-care patients. Am J Geriatr Psychiatry 12:265–271

    PubMed  Google Scholar 

  • Walsh K, Jones L, Tookman A, Mason C, McLoughlin J, Blizard R (2007) Reducing emotional distress in people caring for patients receiving specialist palliative care. Br J Psychiatr 190:142–147

    Article  Google Scholar 

  • Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manage 17:418–428

    Article  PubMed  CAS  Google Scholar 

  • Williams AL, Bakitas M (2012) Cancer family caregivers: a new direction for interventions. J Palliat Med 15:775–783

    Article  PubMed  Google Scholar 

  • Williams AL, Holmes-Tisch AJ, Dixon J, McCorkle R (2013) Factors associated with depressive symptoms in cancer family caregivers of patients receiving chemotherapy. Support Care Cancer. doi:10.1007/s00520-013-1802-y

    Google Scholar 

  • Williams AL, McCorkle R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care 9:315–325

    Article  PubMed  Google Scholar 

  • Williamson G, Shaffer D, Schulz R (1998) Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. Health Psychol 17:152–162

    Article  PubMed  CAS  Google Scholar 

  • World Health Organization International Agency for Research on Cancer (2012) World cancer factsheet. http://publications.cancerresearchuk.org/downloads/product/CS_FS_WORLD_A4.pdf. Accessed 13 April 2013

  • Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG (2010) Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol 28:4457–4464

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Anna-leila Williams .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2014 Springer-Verlag Berlin Heidelberg

About this chapter

Cite this chapter

Williams, l. (2014). Psychosocial Burden of Family Caregivers to Adults with Cancer. In: Goerling, U. (eds) Psycho-Oncology. Recent Results in Cancer Research, vol 197. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-40187-9_6

Download citation

  • DOI: https://doi.org/10.1007/978-3-642-40187-9_6

  • Published:

  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-642-40186-2

  • Online ISBN: 978-3-642-40187-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics