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Published in: Supportive Care in Cancer 10/2003

01-10-2003 | Original Article

Family caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer

Authors: Catherine M. Burns, Tracy Dixon, Dorothy Broom, Wayne T. Smith, Paul S. Craft

Published in: Supportive Care in Cancer | Issue 10/2003

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Abstract

Goals of work

Caregivers have become part of a triad of care and frequently attend patient consultations in the ambulatory cancer setting. Effective caregiving and decision making require that they understand the course of the disease and the changing treatment goals. This study sought to evaluate caregiver perception of treatment intent.

Patients and methods

A cohort of 317 subjects (181 patients and 136 caregivers) from The Canberra Hospital's Cancer Services were followed for 6 months. Caregiver understanding of patient treatment intent was measured over time together with sources of information.

Main results

Most caregivers understood that the illness was life-threatening (92% at week 12) and that treatment goals were to control illness and improve quality of life. Only half understood that treatment was noncurative (48% at week 12); 27% were unsure and 25% believed that treatment would cure. A high proportion of caregivers identified the specialist as the source of information (77%) and almost half also included the general practitioner (47%). These figures remained fairly constant over time. There were significant gender and age differences in understanding. At baseline, more women than men had an accurate perception of treatment intent and these numbers increased over time. Men's perception did not change.

Conclusions

Caregivers' ability to fully engage in the task of caring for those with a terminal illness may be hampered by their lack of understanding of the treatment patients receive.
Literature
1.
go back to reference Northouse PG, Northouse LL (1987) Communication and cancer: issues confronting patients, health professionals, and family members. J Psychosoc Oncol 5:17–45 Northouse PG, Northouse LL (1987) Communication and cancer: issues confronting patients, health professionals, and family members. J Psychosoc Oncol 5:17–45
2.
go back to reference Bond S (1982) Relatively speaking—communicating with families of cancer patients. The relatives and doctors. part 1. Nurs Times 78:962–965PubMed Bond S (1982) Relatively speaking—communicating with families of cancer patients. The relatives and doctors. part 1. Nurs Times 78:962–965PubMed
3.
go back to reference Krant MJ, Johnston L (1977) Family members' perceptions of communications in late stage cancer. Int J Psychiatry Med 8:203–216PubMed Krant MJ, Johnston L (1977) Family members' perceptions of communications in late stage cancer. Int J Psychiatry Med 8:203–216PubMed
4.
go back to reference Houts PS, Rusenas I, Simmonds MA, Hufford DL (1991) Information needs of families of cancer patients: a literature review and recommendations. J Cancer Educ 6:255–261PubMed Houts PS, Rusenas I, Simmonds MA, Hufford DL (1991) Information needs of families of cancer patients: a literature review and recommendations. J Cancer Educ 6:255–261PubMed
5.
go back to reference Tringali CA (1986) The needs of family members of cancer patients. Oncol Nurs Forum 13:65–70PubMed Tringali CA (1986) The needs of family members of cancer patients. Oncol Nurs Forum 13:65–70PubMed
6.
go back to reference Cooper ET (1984) A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nurs 7:301–308PubMed Cooper ET (1984) A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nurs 7:301–308PubMed
7.
go back to reference Maguire P, Faulkner A (1988) Communicate with cancer patients: 2. Handling uncertainty, collusion, and denial. BMJ 297:972–974PubMed Maguire P, Faulkner A (1988) Communicate with cancer patients: 2. Handling uncertainty, collusion, and denial. BMJ 297:972–974PubMed
8.
go back to reference Hinds C, Streater A, Mood D (1995) Functions and preferred methods of receiving information related to radiotherapy. Perceptions of patients with cancer. Cancer Nurs 18:374–384PubMed Hinds C, Streater A, Mood D (1995) Functions and preferred methods of receiving information related to radiotherapy. Perceptions of patients with cancer. Cancer Nurs 18:374–384PubMed
9.
go back to reference Dyck S, Wright K (1985) Family perceptions: the role of the nurse throughout an adult's cancer experience. Oncol Nurs Forum 12:53–56 Dyck S, Wright K (1985) Family perceptions: the role of the nurse throughout an adult's cancer experience. Oncol Nurs Forum 12:53–56
10.
go back to reference Hockley JM, Dunlop R, Davies RJ (1988) Survey of distressing symptoms in dying patients and their families in hospital and the response to a symptom control team. Br Med J (Clin Res Ed) 296:1715–1717 Hockley JM, Dunlop R, Davies RJ (1988) Survey of distressing symptoms in dying patients and their families in hospital and the response to a symptom control team. Br Med J (Clin Res Ed) 296:1715–1717
11.
go back to reference Thomas C, Morris SM (2002) Informal carers in cancer contexts. Eur J Cancer Care (Engl) 11:178–182 Thomas C, Morris SM (2002) Informal carers in cancer contexts. Eur J Cancer Care (Engl) 11:178–182
12.
go back to reference 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 91:1029–1039CrossRefPubMed 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 91:1029–1039CrossRefPubMed
13.
go back to reference Olesen VL (1989) Caregiving, ethical and informal: emerging challenges in the sociology of health and illness (review). J Health Soc Behav 30:1–10PubMed Olesen VL (1989) Caregiving, ethical and informal: emerging challenges in the sociology of health and illness (review). J Health Soc Behav 30:1–10PubMed
14.
go back to reference Nijboer C, Tempelaar R, Sanderman R, Triemstra M, van den Spruijt RJ, et al (1998) Cancer and caregiving: the impact on the caregiver's health (review). Psychooncology 7:3–13CrossRefPubMed Nijboer C, Tempelaar R, Sanderman R, Triemstra M, van den Spruijt RJ, et al (1998) Cancer and caregiving: the impact on the caregiver's health (review). Psychooncology 7:3–13CrossRefPubMed
15.
go back to reference Seale C, Addington-Hall J, McCarthy M (1997) Awareness of dying: prevalence, causes and consequences. Soc Sci Med 45:477–484CrossRefPubMed Seale C, Addington-Hall J, McCarthy M (1997) Awareness of dying: prevalence, causes and consequences. Soc Sci Med 45:477–484CrossRefPubMed
16.
go back to reference Rose KE (1999) A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. J Clin Nurs 8:81–88CrossRefPubMed Rose KE (1999) A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. J Clin Nurs 8:81–88CrossRefPubMed
17.
go back to reference Seale C (1995) Dying alone. Sociol Health Illness 17:376–392 Seale C (1995) Dying alone. Sociol Health Illness 17:376–392
18.
go back to reference Haug MR (1994) Elderly patients, caregivers, and physicians: theory and research on health care triads (review). J Health Soc Behav 35:1–12PubMed Haug MR (1994) Elderly patients, caregivers, and physicians: theory and research on health care triads (review). J Health Soc Behav 35:1–12PubMed
19.
go back to reference Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284:2476–2482CrossRefPubMed Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284:2476–2482CrossRefPubMed
20.
go back to reference Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132:825–832PubMed Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132:825–832PubMed
21.
go back to reference Kellehear A (1999) Health promoting palliative care. Oxford University Press, Oxford Kellehear A (1999) Health promoting palliative care. Oxford University Press, Oxford
22.
go back to reference Weitzner MA, Haley WE, Chen H (2000) The family caregiver of the older cancer patient. Hematol Oncol Clin North Am 14:269–281PubMed Weitzner MA, Haley WE, Chen H (2000) The family caregiver of the older cancer patient. Hematol Oncol Clin North Am 14:269–281PubMed
23.
go back to reference Rolland JS (1994) Families, illness, and disability: an integrative treatment model. Basicbooks, New York Rolland JS (1994) Families, illness, and disability: an integrative treatment model. Basicbooks, New York
24.
go back to reference Schofield HL, Herrman HE, Bloch S, Howe A, Singh B (1997) A profile of Australian family caregivers: diversity of roles and circumstances. Aust N Z J Public Health 21:59–66PubMed Schofield HL, Herrman HE, Bloch S, Howe A, Singh B (1997) A profile of Australian family caregivers: diversity of roles and circumstances. Aust N Z J Public Health 21:59–66PubMed
25.
go back to reference Miyaji NT (1993) The power of compassion: truth-telling among American doctors in the care of dying patients. Soc Sci Med 36:249–264CrossRefPubMed Miyaji NT (1993) The power of compassion: truth-telling among American doctors in the care of dying patients. Soc Sci Med 36:249–264CrossRefPubMed
26.
go back to reference Surbone A, Zwitter M (eds) (1997) Communication with the cancer patient: information and truth. Ann N Y Acad Sci 809:1–540PubMed Surbone A, Zwitter M (eds) (1997) Communication with the cancer patient: information and truth. Ann N Y Acad Sci 809:1–540PubMed
27.
go back to reference Delvecchio Good MJ, Good BJ, Schaffer C, Lind SE (1990) American oncology and the discourse on hope. Cult Med Psychiatry 14:59–79PubMed Delvecchio Good MJ, Good BJ, Schaffer C, Lind SE (1990) American oncology and the discourse on hope. Cult Med Psychiatry 14:59–79PubMed
28.
go back to reference Burton MV, Parker RW (1997) Psychological aspects of cancer surgery: surgeons' attitudes and opinions. Psychooncology 6:47–64CrossRefPubMed Burton MV, Parker RW (1997) Psychological aspects of cancer surgery: surgeons' attitudes and opinions. Psychooncology 6:47–64CrossRefPubMed
29.
go back to reference The AM, Hak T, Koeter G, van Der Wal G (2000) Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ 321:1376–1381CrossRefPubMed The AM, Hak T, Koeter G, van Der Wal G (2000) Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ 321:1376–1381CrossRefPubMed
30.
go back to reference Lamont EB, Christakis NA (2001) Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 134:1096–1105PubMed Lamont EB, Christakis NA (2001) Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 134:1096–1105PubMed
31.
go back to reference Taylor SE, Klein LC, Lewis BP, Gruenewald TL, Gurung RA, Updegraff JA (2000) Biobehavioral responses to stress in females: tend-and-befriend, not fight-or-flight. Psychol Rev 107:411–429CrossRefPubMed Taylor SE, Klein LC, Lewis BP, Gruenewald TL, Gurung RA, Updegraff JA (2000) Biobehavioral responses to stress in females: tend-and-befriend, not fight-or-flight. Psychol Rev 107:411–429CrossRefPubMed
32.
go back to reference Yates P, Stetz KM (1999) Families' awareness of and response to dying. Oncol Nurs Forum 26:113–120PubMed Yates P, Stetz KM (1999) Families' awareness of and response to dying. Oncol Nurs Forum 26:113–120PubMed
33.
go back to reference Timmermans S (1994) Dying of awareness: the theory of awareness contexts revisited. Sociol Health Illness 16:322–336 Timmermans S (1994) Dying of awareness: the theory of awareness contexts revisited. Sociol Health Illness 16:322–336
34.
go back to reference Hinton J (1999) The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliat Med 13:19–35CrossRefPubMed Hinton J (1999) The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliat Med 13:19–35CrossRefPubMed
35.
go back to reference Lobb EA, Kenny DT, Butow PN, Tattersall MH (2001) Women's preferences for discussion of prognosis in early breast cancer. Health Expect 4:48–57CrossRefPubMed Lobb EA, Kenny DT, Butow PN, Tattersall MH (2001) Women's preferences for discussion of prognosis in early breast cancer. Health Expect 4:48–57CrossRefPubMed
Metadata
Title
Family caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer
Authors
Catherine M. Burns
Tracy Dixon
Dorothy Broom
Wayne T. Smith
Paul S. Craft
Publication date
01-10-2003
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 10/2003
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-003-0501-5

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