Skip to main content

Family Caregivers to Adults with Cancer: The Consequences of Caring

  • Chapter
  • First Online:

Part of the book series: Recent Results in Cancer Research ((RECENTCANCER,volume 210))

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 health care, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers are de facto partners with the healthcare team. The cancer family caregiver role is 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 consequences cancer family caregivers may accrue. The topics covered include 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, restriction of activities, and financial concerns), 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 intervention studies that have been conducted to ameliorate the burden of caregiving, and the state of caregiver research.

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

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   79.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   99.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   139.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  • Adams RN, Mosher CE, Cannady RS, Lucette A, Kim Y (2014) Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients. Psycho-Oncology 23:1178–1184

    Article  PubMed  PubMed Central  Google Scholar 

  • 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

    Article  PubMed  Google Scholar 

  • Bayen E, Laigle-Donadey F, Proute M (2016) The multidimensional burden of informal caregivers in primary malignant brain tumor. Support Care Cancer. doi:10.1007/s00520-016-3397-6

    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 

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

    Article  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 11:389–396

    Article  PubMed  PubMed Central  Google Scholar 

  • 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

    CAS  PubMed  Google Scholar 

  • Ferrel BR, Baird P (2012) Deriving meaning and faith in caregiving. Semin Oncol Nurs 28:256–261

    Article  Google Scholar 

  • Fujinami RS, Virginia S, Finley Z, Uman G, Grant M, Ferrell B (2015) Family caregivers’ distress levels related to quality of life, burden, and preparedness. Psycho-Oncology 24:54–62

    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 

  • 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 

  • Griffin JM, Meis L, Greer N, Jensen A, MacDonald R, Rutks I, Carlyle M, Wilt TJ (2013) Effectiveness of family and caregiver interventions on patient outcomes among adults with cancer or memory-related disorders: a systematic review. VA-ESP Project #09-009, p 38

    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 

  • 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 30:455–461

    Article  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. Psycho-Oncology 9:232–242

    Article  CAS  PubMed  Google Scholar 

  • Hanly P, Ó Céilleachair A, Skally M, O’Leary E, Kapur K, FitzpatrickP, Staines A, Sharp L (2013) How much does it cost to care for survivors of colorectal cancer? Caregiver’s time, travel and out-of-pocket costs. Support Care Cancer 21:2583–2592

    Google Scholar 

  • Hanly P, Maguire R, Balfe M, Hyland P, Timmons A, O’Sullivan E, Butow P, Sharp L (2016) Burden and happiness in head and neck cancer carers: the role of supportive care needs. Support Care Cancer 24:4283–4291

    Article  PubMed  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  CAS  PubMed  Google Scholar 

  • Kent E, Rowland J, Northouse L, Litzelman K, Chou W, Shelburne N, Timura C, O’Mara A, Hus K (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. doi:10.1002/cncr.29939

    Google Scholar 

  • Kershaw T, Ellis KR, Yoon H, Schafenacker A, Katapodi M, Northouse L (2015) The interdependence of advanced cancer patients’ and their family caregivers’ mental health, physical health, and self-efficacy over time. Ann Behav Med 49:901–911

    Article  PubMed  PubMed Central  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 

  • Kim Y, Schulz R (2008) Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health 20:483–503

    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, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology 15:795–804

    Article  PubMed  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. Psycho-Oncology 20:762–770

    Article  PubMed  Google Scholar 

  • Kim Y, Carver CS, Rocha-Lima C, Shaffer KM (2013) Depressive symptoms among caregivers of colorectal cancer patients during the first year since diagnosis: a longitudinal investigation. Psycho-Oncology 22:362–367

    Article  PubMed  Google Scholar 

  • Kim Y, Carver CS, Shaffer KM, Gansler T, Cannady RS (2015) Cancer caregiving predicts physical impairments: roles of earlier caregiving stress and being a spousal caregiver. Cancer 121:302–310

    Article  PubMed  Google Scholar 

  • Kim HH, Kim SY, Kim JM, Kim SW, Shin IS, Shim HJ, Hwang JE, Chung IJ, Yoon JS (2016) Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients. Palliat Support Care 14:5–12

    Article  PubMed  Google Scholar 

  • Kim Y, Shaffer KM, Carver CS, Cannady RS (2016) Quality of life of family caregivers 8 years after a relative’s cancer diagnosis: follow-up of the national quality of life survey for caregivers. Psycho-Oncology 25:266–274

    Article  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. doi:10.1186/s12904-016-0082-y

    PubMed  PubMed Central  Google Scholar 

  • Lambert SD, Duncan LR, Kapellas S, Bruson AM, Myrand M, Santa Mina D, Culos-Reed N, Lambrou A (2016) A descriptive systematic review of physical activity interventions for caregivers: effects on caregivers’ and care recipients’ psychosocial outcomes, physical activity levels, and physical health. Ann Behav Med 50:907–919

    Article  PubMed  Google Scholar 

  • Lee KC, Yin JJ, Lin PC, Lu SH (2015) Sleep disturbances and related factors among family caregivers of patients with advanced cancer. Psycho-Oncology 24:1632–1638

    Article  PubMed  Google Scholar 

  • Leroy T, Fournier E, Penel N, Christophe V (2016) Crossed views of burden and emotional distress of cancer patients and family caregivers during palliative care. Psycho-Oncology 25:1278–1285

    Article  PubMed  Google Scholar 

  • Maguire R, Hanly P, Hyland P, Sharp L (2016) Understanding burden in caregivers of colorectal cancer survivors: what role do patient and caregiver factors play? Eur J Cancer Care. doi:10.1111/ecc.12527

    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 

  • 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 

  • 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. Psycho-Oncology 20:479–487

    Article  PubMed  PubMed Central  Google Scholar 

  • Mosher CE, Champion VL, Azzoloi CG (2013a) Economic and social changes among distressed family caregivers of lung cancer patients. Support Care Cancer 21:819–826

    Article  PubMed  Google Scholar 

  • Mosher CE, Jaynes HA, Hanna N, Ostroff JS (2013b) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437

    Article  PubMed  Google Scholar 

  • Mosher CE, Winger JG, Hanna N, Jalal SI, Einhorn LH, Birdas TJ, Ceppa DP, Kesler KA, Schmitt J, Kashy DA, Champion VL (2016) Randomized pilot trial of a telephone symptom management intervention for symptomatic lung cancer patients and their family caregivers. J Pain Symptom Manage 52:469–482

    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 

  • Nissen KG, Trevino K, Lange T, Prigerson HG (2016) Family relationships and psychosocial dysfunction among family caregivers of patients with advanced cancer. J Pain Symptom Manage 52:841–849

    Article  PubMed  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  PubMed Central  Google Scholar 

  • O’Toole MS, Zachariae R, Renna ME, Mennin DS, Applebaum A (2016) Cognitive behavioral therapies for informal caregivers of patients with cancer and cancer survivors: a systematic review and meta-analysis. Psycho-Oncology. doi:10.1002/pon.4144

    Google Scholar 

  • Paiva BSR, Carvalho AL (2015) “Oh, yeah, I’m getting closer to god”: spirituality and religiousness of family caregivers of cancer patients undergoing palliative care. Support Care Cancer 23:2383–2389

    Article  PubMed  Google Scholar 

  • Perez-Ordóñez F, Frías-Osuna A, Romero-Rodríguez Y, Del-Pino-Casado R (2016) Coping strategies and anxiety in caregivers of palliative cancer patients. Eur J Cancer Care 25:600–607

    Article  Google Scholar 

  • Reblin M, Donaldson G, Ellington L, Mooney K, Caserta M, Lund D (2016) Spouse cancer caregivers’ burden and distress at entry to home hospice: the role of relationship quality. J Soc Pers Relat 33:666–686

    Article  PubMed  Google Scholar 

  • Round J, Jones L, Morris S (2015) Estimating the cost of caring for people with cancer at the end of life: a modelling study. Palliat Med 29:899–907

    Article  PubMed  PubMed Central  Google Scholar 

  • Rumpold T, Schur S, Amering M, Kirchheiner K, Masel EK, Watzke H, Schrank B (2016a) Informal caregivers of advanced-stage cancer patients: every second is at risk for psychiatric morbidity. Support Care Cancer 24:1975–1982

    Article  CAS  PubMed  Google Scholar 

  • Rumpold T, Schur S, Amering M, Ebert-Vogel A, Kirchheiner K, Masel E, Watzke H, Schrank B (2016b) Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients. Psycho-Oncology. doi:10.1002/pon.4205

    Google Scholar 

  • Schrank B, Ebert-Vogel A, Amering M, Masel EK, Neubauer M, Watzke H, Zehetmayer S, Schur S (2016) Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients. Psycho-Oncology 25:808–814

    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 

  • Shaffer KM, Jacobs JM, Nipp RD, Carr A, Jackson VA, Park ER, Pirl WF, El-Jawahri A, Gallagher ER, Greer JA, Temel JS (2016a) Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis. Support Care Cancer. doi:10.1007/s00520-016-3488-4

    PubMed  Google Scholar 

  • Shaffer KM, Kim Y, Carver CS (2016b) Physical and mental health trajectories of cancer patients and caregivers across the year post-diagnosis: a dyadic investigation. Psychol Health 31:655–674

    Article  PubMed  PubMed Central  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 

  • Shilling V, Matthews L, Jenkins V, Fallowfield L (2016) Patient-reported outcome measures for cancer caregivers: a systematic review. Qual Life Res 25:1859–1876

    Article  PubMed  PubMed Central  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  CAS  PubMed  Google Scholar 

  • Tan JY, Lim HA, Kuek NM, Kua EH, Mahendran R (2015) Caring for the caregiver while caring for the patient: exploring the dyadic relationship between patient spirituality and caregiver quality of life. Support Care Cancer 23:3403–3406

    Article  PubMed  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

    Article  PubMed  Google Scholar 

  • Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M (2011) Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist 15:883–893

    Article  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  CAS  PubMed  Google Scholar 

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

    Article  PubMed  PubMed Central  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 

  • 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 21:2387–2394

    Article  PubMed  Google Scholar 

  • Williams AL, Dixon J, Feinn R, McCorkle R (2015) Cancer family caregiver depression: are religion-related variables important? Psycho-Oncology 24:825–831

    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  CAS  PubMed  Google Scholar 

  • World Health Organization International Agency for Research on Cancer, Stewart BW, Wild CP (eds) World Cancer Report 2014, p 16

    Google Scholar 

  • 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  PubMed Central  Google Scholar 

  • Yabroff KR, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115(18 Suppl):4362–4373

    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

© 2018 Springer International Publishing AG

About this chapter

Cite this chapter

Williams, Al. (2018). Family Caregivers to Adults with Cancer: The Consequences of Caring. In: Goerling, U., Mehnert, A. (eds) Psycho-Oncology. Recent Results in Cancer Research, vol 210. Springer, Cham. https://doi.org/10.1007/978-3-319-64310-6_6

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-64310-6_6

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-64309-0

  • Online ISBN: 978-3-319-64310-6

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics