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A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients

  • Kimberson Tanco (a1), Ji Chan Park (a2), Agustina Cerana (a1), Amy Sisson (a3), Nikhil Sobti (a4) and Eduardo Bruera (a1)...

Abstract

Objective:

Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

Method:

A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

Results:

A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4–125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.

Significance of results:

There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

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Copyright

Corresponding author

Address correspondence and reprint requests to: Kimberson Tanco, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, Texas 77030. E-mail: kctanco@mdanderson.org.

Footnotes

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* Both authors contributed equally to this manuscript.

Footnotes

References

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Al-Gamal, E., Long, T. & Livesley, J. (2009). Development of a modified instrument to measure anticipatory grieving in Jordanian parents of children diagnosed with cancer: The Marwit and Meuser Caregiver Inventory Childhood Cancer. Cancer Nursing, 32, 211219.
Applebaum, A.J. & Breitbart, W. (2012). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11, 231252.
Aslett, H., Morrison, V., Zinovieff, F., et al. (2009). It's not what you ask, but how you ask it: Needs disclosure by familial carers of cancer patients. Psycho-Oncology, 18, S2.
Bachner, Y.G., Gesis, Z., Davidov, E., et al. (2008). Caregivers' communication with patients about illness and death: Initial validation of a scale. Omega (Westport) , 57(4), 381397.
Bonner, M.J., Hardy, K.K., Guill, A.B., et al. (2006). Development and validation of the parent experience of child illness. Journal of Pediatric Psychology, 31(3), 310321.
Cameron, J.I., Franche, R.L., Cheung, A.M., et al. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94(2), 521527.
Campbell, H.S., Sanson-Fisher, R., Taylor-Brown, J., et al. (2009). The cancer support person's unmet needs survey: Psychometric properties. Cancer, 115, 33513359.
Casarett, D., Pickard, A., Bailey, F.A., et al. (2008). Do palliative consultations improve patient outcomes? Journal of the American Geriatric Society, 56(4), 593599.
Centers for Disease Control and Prevention (2015). Health-related quality of life (HRQoL). Available from http://www.cdc.gov/hrqol/concept.htm. Accessed October 7, 2015.
Chen, H.C., Chen, M.L., Lotus Shyu, Y.I., et al. (2007). Development and testing of a scale to measure caregiving load in caregivers of cancer patients in Taiwan: The Care Task Scale–Cancer. Cancer Nursing, 30(3), 223231.
Christakis, N.A. & Allison, P.D. (2006). Mortality after the hospitalization of a spouse. The New England Journal of Medicine, 354, 719730.
Cohen, R., Leis, A.M., Kuhl, D., et al. (2006). QoLLTI–F: Measuring family carer quality of life. Palliative Medicine, 20, 755767.
Cooper, B., Kinsella, G.J. & Picton, C. (2006). Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psycho-Oncology, 15(7), 613622.
Deeken, J.F., Taylor, K.L., Mangan, P., et al. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26(4), 922953.
Dumont, S., Turgeon, J., Allard, P., et al. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912921.
Duran, B. (2011). Developing a scale to measure parental worry and their attitudes toward childhood cancer after successful completion of treatment: A pilot study. Journal of Pediatric Oncology Nursing, 28(3), 154168.
Edwards, B. & Clarke, V. (2005). The validity of the family relationships index as a screening tool for psychological risk in families of cancer patients. Psycho-Oncology, 14(7), 546554.
Enskar, K., Carlsson, M., von Essen, L., et al. (1997). Development of a tool to measure the life situation of parents of children with cancer. Quality of Life Research, 6, 248256.
Ewing, G. & Grande, G. (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine, 27, 244256.
Ferrell, B.R., Ferrell, B.A., Rhiner, M., et al. (1991). Family factors influencing cancer pain management. Postgraduate Medical Journal, 67(Suppl. 2), S64S69.
Ferrell, B., Rhiner, M. & Rivera, L.M. (1993). Development and evaluation of the Family Pain Questionnaire. Journal of Psychosocial Oncology, 10(4), 2136.
Ferrell, B.R., Grant, M., Bornerman, T., et al. (1999). Family caregiving in cancer pain management. Journal of Palliative Medicine, 2, 185195.
Fried, T.R., Bradley, E.H. & Towle, V.R. (2003). Valuing the outcomes of treatment: Do patients and their caregivers agree? Archives of Internal Medicine, 163(17), 20732078.
Gelfman, L.P., Meier, D.E. & Morrison, R.S. (2008). Does palliative care improve quality? A survey of bereaved family members. Journal of Pain and Symptom Management, 36(1), 2228.
Girgis, A., Lambert, S. & Lecathelinais, C. (2011). The supportive care needs survey for partners and caregivers of cancer survivors: Development and psychometric evaluation. Psycho-Oncology, 20, 387393.
Given, B., Wyatt, G., Given, C., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31, 11051117.
Given, C.W., Given, B., Stommel, M., et al. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15, 271283.
Glajchen, M. (2009). Role of family caregivers in cancer pain management. In Cancer pain: Assessment and management, 2nd ed. Bruera, E.D. & Portenoy, R.K. (eds.), pp. 597607. New York: Cambridge University Press.
Glajchen, M., Kornblith, A., Homel, P., et al. (2005). Development of a brief assessment scale for caregivers of the medically ill. Journal of Pain and Symptom Management, 29, 245254.
Gwyther, L.P. & George, L.K. (1986). Symposium. Caregivers for dementia patients: Complex determinants of well-being and burden. The Gerontologist, 26, 245247.
Haberman, M.R., Woods, N.F. & Packard, N.J. (1990). Demands of chronic illness: Reliability and validity assessment of a demands-of-illness inventory. Holistic Nursing Practice, 6, 2535.
Hearson, B. & Clement, S. (2007). Sleep disturbance in family caregivers of patients with advanced cancer. International Journal of Palliative Nursing, 13, 495501.
Heyland, D.K., Cook, D.J., Rocker, G.M., et al. (2010). The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: The Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliative Medicine, 24, 682695.
Higgins, P.C. & Prigerson, H.G. (2013). Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver's perception of patient care near death. PLoS One, 8(6), e66066.
Hileman, J.W. & Lackey, N.R. (1990). Self-identified needs of patients with cancer at home and their home caregivers: A descriptive study. Oncology Nursing Forum, 17(6), 907913.
Hileman, J.W., Lackey, N.R. & Hassanein, R.S. (1992). Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum, 19, 771777.
Howlader, N., Noone, A.M., Krapcho, M., et al. , (eds.) (2013). Cancer statistics review, 1975–2010. Bethesda, MD: National Cancer Institute.
Hudson, P.L., Trauer, T., Graham, S., et al. (2010). A systematic review of instruments related to family caregivers of palliative care patients. Palliative Medicine, 24(7), 656668.
Ishii, Y., Miyashita, M., Sato, K., et al. (2012). Family's difficulty scale in end-of-life home care: A new measure of the family's difficulties in caring for patients with cancer at the end of life at home from bereaved family's perspective. Journal of Palliative Medicine, 15(2), 210215.
Kang, K.A. (2011). Reliability and validity of the suffering scale of family of patients with terminal cancer [in Korean]. Journal of Korean Oncology Nursing, 11(1), 4957.
Kazak, A.E., Prusak, A., McSherry, M., et al. (2001). The Psychosocial Assessment Tool (PAT): Pilot data on a brief screening instrument for identifying high risk families in pediatric oncology. Families, Systems, & Health, 19, 303317.
Kazak, A.E., McClure, K.S., Alderfer, M.A., et al. (2004). Cancer-related parental beliefs: The Family Illness Beliefs Inventory (FIBI). Journal of Pediatric Psychology, 29, 531542.
Kilpatrick, M.G., Kristjanson, L.J. & Tataryn, D.J. (1998). Measuring the information needs of husbands of women with breast cancer: Validity and reliability of the Family Inventory of Needs–Husbands. Oncology Nursing Forum, 25, 13471351.
Kim, Y. & Given, B.A. (2008). Quality of life of family caregivers of cancer survivors. Cancer, 112, 25562568.
Kim, Y., Wellisch, D.K., Spillers, R.L., et al. (2007). Psychological distress of female cancer caregivers: Effects of type of cancer and caregivers' spirituality. Supportive Care in Cancer, 15(12), 13671374.
Kim, Y., Kashy, D., Spillers, R., et al. (2010). Needs assessment of family caregivers of cancer survivors: Three cohorts comparison. Psycho-Oncology, 19, 573582.
Kim, Y., Carver, C.S., Cannady, R.S., et al. (2013). Self-reported medical morbidity among informal caregivers of chronic illness: The case of cancer. Quality of Life Research, 22, 12651272.
Kristjanson, L.J. (1993). Validity and reliability testing of the FAMCARE scale: Measuring family satisfaction with advanced cancer care. Social Science & Medicine, 36, 693701.
Kristjanson, L.J., Atwood, J. & Degner, L.F. (1995). Validity and reliability of the family inventory of needs (FIN): Measuring the care needs of families of advanced cancer patients. Journal of Nursing Measurement, 3, 109126.
Levesque, J.V. & Maybery, D.J. (2014). The Parental Cancer Questionnaire: Scale structure, reliability, and validity. Supportive Care in Cancer, 22(1), 2332.
Longman, A.J., Atwood, J.R., Sherman, J.B., et al. (1992). Care needs of home-based cancer patients and their caregivers: Quantitative findings. Cancer Nursing, 15(3), 182190.
Lund, L., Ross, L. & Groenvold, M. (2012). The initial development of the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Acta Oncologica, 51(8), 10091019.
McMillan, S.C. & Mahon, M. (1994). The impact of hospice services on the quality of life of primary caregivers. Oncology Nursing Forum, 21, 11891195.
Merriam-Webster (2015). Definition of “satisfaction.” Available from http://www.merriam-webster.com/dictionary/satisfaction.
Minaya, P., Baumstarck, K., Berbis, J., et al. (2012). The Caregiver Oncology Quality of Life Questionnaire (CarGOQoL): Development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. European Journal of Cancer, 48(6), 904911.
Mitchell, G., Girgis, A., Moyez, J., et al. (2010). A GP caregiver needs toolkit versus usual care in the management of the needs of caregivers of patients with advanced cancer: A randomized controlled trial. Trials, 11, 115.
Miyashita, M., Morita, T., Sato, K., et al. (2008). Good death inventory: A measure for evaluating a good death from the bereaved family member's perspective. Journal of Pain and Symptom Management, 35(5), 486498.
Monterosso, L., Kristjanson, L.J. & Dadd, G. (2006). Content validity and reliability testing of the FIN–PED II: A tool to measure care needs of parents of children with cancer. Journal of Nursing Measurement, 14(1), 3144.
Montgomery, R.J.V., Gonyea, J.G. & Hooyman, N.R. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34, 1926.
Murphy, S.L., Xu, J. & Kochanek, K.D. (2013). Deaths: Final data for 2010. National Vital Statistics Reports, Vol. 61, No. 4. Hyattsville, MD: National Center for Health Statistics.
National Cancer Institute (2015). Family caregivers in cancer: Roles and challenges. Available from http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/healthprofessional/page1/AllPages#Reference2.9.
National Institutes of Health (NIH) (2015). SEER cancer stat fact sheets (all sites). Available from http://seer.cancer.gov/statfacts/html/all.html.
Nolan, M.T., Hughes, M.T., Kub, J., et al. (2009). Development and validation of the Family Decision-Making Self-Efficacy Scale. Palliative & Supportive Care, 7, 315321.
Oberst, M.T., Thomas, S.E., Gass, K.A., et al. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing , 12, 209215.
Pai, A., Patino-Fernandez, A.M., McSherry, M., et al. (2008). The Psychosocial Assessment Tool (PAT 2.0): Psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 33, 5062.
Panganiban-Corales, A.T. & Medina, M.F. (2011). Family resources study, part 1: Family resources, family function and caregiver strain in childhood cancer. Asia Pacific Family Medicine, 10(1), 1014.
Partinico, M., Cora, A., Ghisi, M., et al. (2014). A new Italian questionnaire to assess caregivers of cancer patients' satisfaction with palliative care: Multicenter validation of the post mortem questionnaire–short form. Journal of Pain and Symptom Management, 47(2), 298306.
Patterson, J.M., Holm, K.R. & Gurney, J.G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology, 13, 390407.
Patterson, P., Pearce, A. & Slawitschka, E. (2011). The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: Piloting the offspring cancer needs instrument (OCNI). Supportive Care in Cancer, 19(8), 11651174.
Roth, A.J., Kornblith, A.B., Batel-Copel, L., et al. (1998). Rapid screening for psychologic distress in men with prostate carcinoma: A pilot study. Cancer, 82(10), 19041908.
Sales, E. (1992). Psychosocial impact of the phase of cancer on the family: An updated review. Journal of Psychosocial Oncology, 9(4), 118.
Sanjo, M., Morita, T., Miyashita, M., et al. (2009). Caregiving Consequences Inventory: A measure for evaluating caregiving consequences from the bereaved family member's perspective. Psycho-Oncology, 18(6), 657666.
Sargent, J.R., Sahler, O.J.Z., Roghmann, K.J., et al. (1995). Sibling adaptation to childhood cancer collaborative study: Siblings' perceptions of the cancer experience. Journal of Pediatric Psychology, 20(2), 151164.
Siminoff, L.A., Rose, J.H., Zhang, A., et al. (2006). Measuring discord in treatment decision-making: Progress toward development of a cancer communication and decision-making assessment tool. Psycho-Oncology, 15(6), 528540.
Sinfield, P., Baker, R., Tarrant, C., et al. (2009). The Prostate Care Questionnaire for Carers (PCQ–C): Reliability, validity and acceptability. BMC Health Services Research, 9, 229.
Streisand, R., Braniecki, S., Tercyak, K.P., et al. (2001). Childhood illness-related parenting stress: The pediatric inventory for parents. Journal of Pediatric Psychology, 26, 155162.
Teel, C.S. & Press, A.N. (1999). Fatigue among elders in caregiving and non-caregiving roles. Western Journal of Nursing Research, 21, 498520.
Tringali, C. (1986). The needs of family members of cancer patients. Oncology Nursing Forum, 13(4), 6570.
Ugalde, A., Krishnasamy, M. & Schofield, P. (2013). Development of an instrument to self-efficacy in caregivers of people with advanced cancer. Psycho-Oncology, 22(6), 14281434.
Varni, J.W., Seid, M. & Rode, C.A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126139.
von Kanel, R., Mausbach, B.T., Patterson, T.L., et al. (2008). Increased Framingham Coronary Heart Disease Risk Score in dementia caregivers relative to non-caregiving controls. Gerontology, 54, 131137.
Waller, A., Girgis, A., Currow, D., et al. (2008). Development of the Palliative Care Needs Assessment Tool (PC–NAT) for use by multi-disciplinary health professionals. Palliative Medicine, 22, 956964.
Ward, S.E., Berry, P.E. & Misiewicz, H. (1996). Concerns about analgesics among patients and family caregivers in a hospice setting. Research in Nursing & Health, 19(3), 205211.
Weitzner, M.A., Jacobsen, P.B., Wagner, H. Jr., et al. (1999 a). 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. Quality of Life Research, 8, 5563.
Weitzner, M.A., McMillan, S.C. & Jacobsen, P.B. (1999 b). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. Journal of Pain and Symptom Management, 17(6), 418428.
Wells, D.K., James, K., Stewart, J., et al. (2002). The Care of My Child with Cancer: A new instrument to measure caregiving demand in parents of children with cancer. Journal of Pediatric Nursing, 17, 201210.
Whiteley, E.M.J., Kristjanson, L.J., Degner, L.F., et al. (1999). Measuring the care needs of mothers of children with cancer: Development of the FIN–PED. The Canadian Journal of Nursing Research, 31, 103123.
Williamson, G.M. & Schulz, R. (1995). Caring for a family member with cancer: Past communal behavior and affective reactions. Journal of Applied Social Psychology, 25, 93116.
Woodgate, R.L. (2006). Siblings' experiences with childhood cancer: A different way of being in the family. Cancer Nursing, 29(5), 406414.
Wright, P.S. (1993). Parents' perceptions of their quality of life. Journal of Pediatric Oncology Nursing, 10(4), 139145.
Wu, K.K., Cho, V.W., Li, A., et al. (2010). Development of a psychological well-being scale for family caregivers in palliative care. East Asian Archives of Psychiatry, 20(3), 109115.
Yabroff, K.R., Davis, W.W., Lamont, E.B., et al. (2007). Patient time costs associated with cancer care. Journal of the National Cancer Institute, 22(1), 1423.
Yeh, C.H. (2001). Development and testing of the Parental Coping Strategy Inventory (PCSI) with children with cancer in Taiwan. Journal of Advanced Nursing, 36, 7888.
Zarit, S.H., Reever, K.E. & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649655.

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