The aim of this study, in a sample of family caregivers (FCs) of patients with advanced cancer, was to describe the level of FC burden using the Caregiver Reaction Assessment (CRA). In addition, the effects of select FC and patient characteristics on each of the CRA subscales were evaluated.
FCs and patients (n = 112) completed a demographic questionnaire, and Herth Hope Index, and the Hospital Anxiety and Depression Scale. FCs completed the CRA. Data were analyzed using multiple linear regression analyses.
For three of the five CRA subscales (i.e., “impact on finances”, “impact on daily schedule”, and “impact on health”), the mean scores were comparable to a Norwegian sample of FCs caring for patients in the late palliative phase. The variance in each of the CRA subscales was explained by different factors. Total explained variance ranged from 5.5 % (“lack of family support”) to 31.8 % (“impact on daily schedule”). FC characteristics, such as being female and lower educational level, distress regarding the patient’s pain, anxiety, depression, and level of hope, as well as the patients’ number of comorbidities, depression, and hope contributed to an increase in various domains of FC burden. FCs’ level of hope was a significant predictor for three of the CRA subscales (i.e., “self-esteem”, “lack of family support”, and “impact on health”).
Findings suggest that FCs’ and patients’ level of hope are important determinants of caregiver burden and that FCs with lower levels of hope represent a high-risk group for higher levels of caregiver burden.
This is a preview of subscription content, log in to check access.
Buy single article
Instant access to the full article PDF.
Price includes VAT for USA
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
This is the net price. Taxes to be calculated in checkout.
Given BA, Given CW, Helms E, Stommel M, DeVoss DN (1997) Determinants of family care giver reaction. New and recurrent cancer. Cancer Pract 5:17–24
Fletcher BS, Paul SM, Dodd MJ, Schumacher K, West C, Cooper B, Lee K, Aouizerat B, Swift P, Wara W, Miaskowski CA (2008) Prevalence, severity, and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer. J Clin Oncol 26:599–605
Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19:1013–1025
Blood GW, Simpson KC, Dineen M, Kauffman SM, Raimondi SC (1994) Spouses of individuals with laryngeal cancer: caregiver strain and burden. J Commun Disord 27:19–35
Oberst MT, Thomas SE, Gass KA, Ward SE (1989) Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs 12:209–215
Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA (1999) Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86:577–588
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 91:1029–1039
Grov EK, Fossa SD, Tonnessen A, Dahl AA (2006) The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology 15:517–527
Grov EK, Fossa SD, Sorebo O, Dahl AA (2006) Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden. Soc Sci Med 63:2429–2439
Grov EK, Dahl AA, Moum T, Fossa SD (2005) Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 16:1185–1191
Cameron JI, Franche RL, Cheung AM, Stewart DE (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94:521–527
Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz JC (1993) The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychol 12:277–285
Morita T, Hirai K, Sakaguchi Y, Tsuneto S, Shima Y (2004) Family-perceived distress from delirium-related symptoms of terminally ill cancer patients. Psychosom 45:107–113
Kurtz ME, Kurtz JC, Given CW, Given B (1995) Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression—a longitudinal view. Soc Sci Med 40(6):837–846
Given CW, Given B, Stommel M, Collins C, King S, Franklin S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15:271–283
Herth KA, Cutcliffe JR (2002) The concept of hope in nursing 3: hope and palliative care nursing. Br J Nurs 11:977–983
Nowotny M (1991) Every tomorrow, a vision of hope. J Psychosoc Oncol 9:117–127
Utne I, Miaskowski C, Bjordal K, Paul SM, Jakobsen G, Rustoen T (2008) The relationship between hope and pain in a sample of hospitalized oncology patients. Palliat Support Care 6:327–334
Herth K (2000) Enhancing hope in people with a first recurrence of cancer. J Adv Nurs 32:1431–1441
Benzein E, Norberg A, Saveman BI (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med 15:117–126
Ebright PR, Lyon B (2002) Understanding hope and factors that enhance hope in women with breast cancer. Oncol Nurs Forum 29:561–568
Reb AM (2007) Transforming the death sentence: elements of hope in women with advanced ovarian cancer. Oncol Nurs Forum 34:E70–E81
Duggleby WD, Holstlander L, Kylma J, Duncan V, Hammond C, Williams A (2010) Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res 20:148–158
Benzein EG, Berg AC (2005) The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliat Med 19:234–240
Nekolaichuk CL, Bruera E (1998) On the nature of hope in palliative care. J Palliat Care 14:36–42
Rand KL (2009) Hope and optimism: latent structures and influences on grade expectancy and academic performance. J Pers 77:231–260
Travelbee J (1971) Interpersonal aspects of nursing, 2nd edn. University of Michigan, FA Davis Co
Miaskowski C, Dodd M, West C, Schumacher K, Paul SM, Tripathy D, Koo P (2004) Randomized clinical trial of the effectiveness of a self-care intervention to improve cancer pain management. J Clin Oncol 22:1713–1720
West CM, Dodd MJ, Paul SM, Schumacher K, Tripathy D, Koo P, Miaskowski C (2003) The PRO-SELF(c): pain control program—an effective approach for cancer pain management. Oncol Nurs Forum 30:65–73
Wahl AK, Rustoen T, Lerdal A, Hanestad BR, Knudsen O Jr, Moum T (2004) The Norwegian version of the Herth Hope Index (HHI-N): a psychometric study. Palliat Support Care 2:255–263
Benzein E, Berg A (2003) The Swedish version of Herth Hope Index—an instrument for palliative care. Scand J Caring Sci 17:409–415
Herth K (1992) Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs 17:1251–1259
Lin CC, Lai YL, Ward SE (2003) Effect of cancer pain on performance status, mood states, and level of hope among Taiwanese cancer patients. J Pain Symptom Manage 25:29–37
Rustoen T, Wahl AK, Hanestad BR, Lerdal A, Miaskowski C, Moum T (2003) Hope in the general Norwegian population, measured using the Herth Hope Index. Palliat Support Care 1:309–318
Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52:69–77
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370
Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376
Ferrell BR, Rhiner M, Ferrell BA (1993) Development and implementation of a pain education program. Cancer 72:3426–3432
Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA (1999) Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Soc Sci Med 48:1259–1269
Fletcher BA, Schumacher KL, Dodd M, Paul SM, Cooper BA, Lee K, West C, Aouizerat BE, Swift PS, Wara W, Miaskowski C (2009) Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer. Res Nurs Health 32:125–139
Mazanec SR, Daly BJ, Douglas SL, Lipson AR (2011) Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health 34:483–495
Park CH, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN, Lee MS, Park SJ, Park SM, Park S (2012) Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psychooncology 21:282–290
Klepstad P, Loge JH, Borchgrevink PC, Mendoza TR, Cleeland CS, Kaasa S (2002) The Norwegian brief pain inventory questionnaire: translation and validation in cancer pain patients. J Pain Symptom Manage 24:517–525
Buccheri G, Ferrigno D, Tamburini M (1996) Karnofsky and ECOG performance status scoring in lung cancer: a prospective, longitudinal study of 536 patients from a single institution. Eur J Cancer 32A:1135–1141
Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH (1948) The use of nitrogen mustards in the palliative treatment of carcinoma. Cancer 1:648–656
Mor V, Laliberte L, Morris JN, Wiemann M (1984) The Karnofsky Performance Status Scale. An examination of its reliability and validity in a research setting. Cancer 53:2002–2007
Schag CC, Heinrich RL, Ganz PA (1984) Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncol 2:187–193
Mechanic D (1974) Social structure and personal adaption: some neglected dimensions. In: Coelho GV, Hamburg DA, Adams JE (eds) Coping and adaption. Basic Books, New York, pp 32–44
Herth K (1993) Hope in the family caregiver of terminally ill people. J Adv Nurs 18:538–548
Holtslander LF, Duggleby W, Williams AM, Wright KE (2005) The experience of hope for informal caregivers of palliative patients. J Palliat Care 21:285–291
Wennman-Larsen A, Tishelman C (2002) Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci 16:240–247
Duggleby W, Holtslander L, Kylma J, Duncan V, Hammond C, Williams A (2010) Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res 20:148–158
Daly BJ, Douglas S, Lipson A, Foley H (2009) Needs of older caregivers of patients with advanced cancer. J Am Geriatr Soc 57(Suppl 2):S293–S295
Bachner YG, O'Rourke N, Carmel S (2007) Psychometric properties of a modified version of the Caregiver Reaction Assessment Scale measuring caregiving and post-caregiving reactions of caregivers of cancer patients. J Palliat Care 23:80–86
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
Grov EK, Eklund ML (2008) Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home. J Adv Nurs 63:576–585
Park CH, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN et al. (2010) Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psycho-Oncology 21(3):282–290
The study was funded by The Research Council of Norway and Oslo and Akershus University College of Applied Science, Norway.
Conflict of interest
None of the authors have any competing financial interests. The authors have full control of all primary data and agree to allow the journal to review the data if requested.
About this article
Cite this article
Utne, I., Miaskowski, C., Paul, S.M. et al. Association between hope and burden reported by family caregivers of patients with advanced cancer. Support Care Cancer 21, 2527–2535 (2013). https://doi.org/10.1007/s00520-013-1824-5
- Family caregiver
- Cancer pain