A systematic review and thematic synthesis of quality of life in the informal carers of cancer patients with cachexia

Abstract

Background:

Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals.

Aim:

To identify quality of life issues that are relevant to carers of cancer patients with cachexia.

Design:

A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Data sources:

PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included.

Results:

Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional’s input, conflict with the patient and negative emotions.

Conclusion:

The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve.

Keywords

Cancer cachexia quality of life caregivers systematic review thematic synthesis

Get full access to this article

View all access options for this article.

References

IPOS Mori. More than a million. Report for Macmillan Cancer Support, 2011, http://www.macmillan.org.uk/Documents/Cancerinfo/Ifsomeoneelsehascancer/More_than_a_million.pdf

National Institute for Health and Care Excellence. Improving supportive and palliative care for adults with cancer. London: National Institute for Health and Care Excellence, 2004.

McCarthy

. Family members of patients with cancer: what they know, how they know and what they want to know. Eur J Oncol Nurs 2011; 15: 428–441.

Ferrell

Hanson

Grant

. An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care for oncology family caregivers. Psychooncology 2013; 22: 1645–1652.

Given

Sherwood

. Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 2012; 10: 57–64.

Romito

Goldzweig

Cormio

. Informal caregiving for cancer patients. Cancer 2013; 119: 2160–2169.

Carers (Recognition and Services) Act 1995, http://www.legislation.gov.uk/ukpga/1995/12/section/1

Harding

Epiphaniou

Hamilton

. What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support Care Cancer 2012; 20:1975–1982.

Stenberg

Ruland

Miaskowski

. Review of the literature on the effects of caring for a patient with cancer. Psychooncology 2010; 19: 1013–1025.

10.

Kim

Given

. Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 2008; 112: 2556–2568.

11.

Clark

. Evaluating the needs of informal carers. Prog Palliat Care 1993; 1: 3–5.

12.

Kim

Kashy

Wellisch

. Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Ann Behav Med 2008; 35: 230–238.

13.

Segrin

Badger

. Psychological and physical distress are interdependent in breast cancer survivors and their partners. Psychol Health Med 2014; 19: 716–723.

14.

Segrin

Badger

Harrington

. Interdependent psychological quality of life in dyads adjusting to prostate cancer. Health Psychol 2012; 31: 70–79.

15.

Fearon

KCH

Glass

Guttridge

. Cancer cachexia: mediators, signaling, and metabolic pathways. Cell Metab 2012; 16: 153–166.

16.

Bruera

. ABC of palliative care. Anorexia, cachexia, and nutrition. BMJ 1997; 315: 1219–1222.

17.

Tisdale

. Cachexia in cancer patients. Nat Rev Cancer 2002; 2: 862–871.

18.

Bozzetti

. Screening the nutritional status in oncology: a preliminary report on 1000 outpatients. Support Care Cancer 2009; 17: 279–284.

19.

Fearon

Strasser

Anker

. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011; 12: 489–495.

20.

Hawkins

. Anorexia and anxiety in advanced malignancy: the relative problem. J Hum Nutr Diet 2000; 13: 113–117.

21.

Rhondali

Chisholm

Daneshmand

. Association between body image dissatisfaction and weight loss among patients with advanced cancer and their caregivers: a preliminary report. J Pain Symptom Manage 2013; 45: 1039–1049.

22.

Holden

. Anorexia in the terminally ill cancer patient: the emotional impact on the patient and the family. Hosp J 1991; 7: 73–84.

23.

Orrevall

Tishelman

Herrington

. The path from oral nutrition to home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. Clin Nutr 2004; 23: 1280–1287.

24.

Reid

McKenna

Fitzsimons

. The experience of cancer cachexia: a qualitative study of advanced cancer patients and their family members. Int J Nurs Stud 2009; 46: 606–616.

25.

Strasser

Binswanger

Cerny

. Fighting a losing battle: eating-related distress of men with advanced cancer and their female partners. A mixed-methods study. Palliat Med 2007; 21: 129–137.

26.

Moore

. The meaning of food. Am J Clin Nutr 1957; 5: 77–82.

27.

Hudson

Trauer

Graham

. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010; 24: 656–668.

28.

Weitzner

Jacobsen

Wagner

Jr . The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 1999; 8: 55–63.

29.

Hopkinson

Corner

. Helping patients with advanced cancer live with concerns about eating: a challenge for palliative care professionals. J Pain Symptom Manage 2006; 31: 293–305.

30.

Millar

Reid

Porter

. Refractory cachexia and truth-telling about terminal prognosis: a qualitative study. Eur J Cancer Care 2013; 22: 326–333.

31.

Wheelwright

Darlington

Hopkinson

. A systematic review to establish health-related quality-of-life domains for intervention targets in cancer cachexia. BMJ Support Palliat Care. Epub ahead of print 18 June 2014. DOI: 10.1136/bmjspcare-2014-000680.

32.

Centre for Reviews and Dissemination. Systematic reviews: CRD’s guidance for undertaking reviews in health care. York: Centre for Reviews and Dissemination, University of York, 2009.

33.

Moher

Liberati

Tetzlaff

. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J Clin Epidemiol 2009; 62: 1006–1012.

34.

Thomas

Harden

. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8: 45.

35.

Argiles

Anker

Evans

. Consensus on cachexia definitions. J Am Med Dir Assoc 2010; 11: 229–230.

36.

Critical Appraisal Skills Programme (CASP). Qualitative research checklist, 2013, http://www.casp-uk.net/#!casp-tools-checklists/c18f8

37.

Meares

. Primary caregiver perceptions of intake cessation in patients who are terminally ill. Oncol Nurs Forum 1997; 24: 1751–1757.

38.

Van Manen

. Researching lived experience: human science for an action sensitive pedagogy. New York: State University of New York Press, 1990.

39.

Wilson

Pateman

Beaver

. Patient and carer needs following a cancer-related hospital admission: the importance of referral to the district nursing service. J Adv Nurs 2002; 38: 245–253.

40.

McClement

Degner

Harlos

. Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study. J Palliat Med 2003; 6: 737–748.

41.

McClement

Degner

Harlos

. Family responses to declining intake and weight loss in a terminally ill relative. Part 1: fighting back. J Palliat Care 2004; 20: 93–100.

42.

Souter

. Loss of appetite: a poetic exploration of cancer patients’ and their carers’ experiences. Int J Palliat Nurs 2005; 11: 524–532.

43.

Hopkinson

Wright

Corner

. Exploring the experience of weight loss in people with advanced cancer. J Adv Nurs 2006; 54: 304–312.

44.

Hopkinson

. Carers’ influence on diets of people with advanced cancer. Nurs Times 2008; 104: 28–29.

45.

McClement

Harlos

. When advanced cancer patients won’t eat: family responses. Int J Palliat Nurs 2008; 14: 182–188.

46.

Reid

McKenna

Fitzsimons

. Fighting over food: patient and family understanding of cancer cachexia. Oncol Nurs Forum 2009; 36: 439–445.

47.

Locher

Robinson

Bailey

. Disruptions in the organization of meal preparation and consumption among older cancer patients and their family caregivers. Psychooncology 2010; 19: 967–974.

48.

Reid

McKenna

Fitzsimons

. An exploration of the experience of cancer cachexia: what patients and their families want from healthcare professionals. Eur J Cancer Care 2010; 19: 682–689.

49.

Thurmond

. The point of triangulation. J Nurs Scholarsh 2001; 33: 253–258.

50.

Shragge

Wismer

Olson

. Shifting to conscious control: psychosocial and dietary management of anorexia by patients with advanced cancer. Palliat Med 2007; 21: 227–233.

51.

Sehulster

. Things we talk about, how frequently, and to whom: frequency of topics in everyday conversation as a function of gender, age, and marital status. Am J Psychol 2006; 119: 407–432.

52.

Lazarus

Folkman

. Stress, appraisal, and coping. New York: Springer, 1984.

53.

Stamataki

Burden

Molassiotis

. Weight changes in oncology patients during the first year after diagnosis: a qualitative investigation of the patients’ experiences. Cancer Nurs 2011; 34: 401–409.

54.

Fletcher

Miaskowski

Given

. The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs 2012; 16: 387–398.

55.

McLean

Jones

Rydall

. A couples intervention for patients facing advanced cancer and their spouse caregivers: outcomes of a pilot study. Psychooncology 2008; 17: 1152–1156.

56.

Northouse

Kershaw

Mood

. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology 2005; 14: 478–491.