Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-10T05:09:20.588Z Has data issue: false hasContentIssue false
  • English
  • Français

Assessing cancer caregivers' needs for an early targeted psychosocial support project: The experience of the oncology department of the Poliambulanza Foundation

Published online by Cambridge University Press:  26 June 2014

Fausto Meriggi ,
Federica Andreis ,
Veronica Premi ,
Nadia Liborio ,
Claudio Codignola ,
Maria Mazzocchi ,
Anna Rizzi ,
Tiziana Prochilo ,
Luigina Rota  and
Brunella Di Biasi
...Show all authors
Fausto Meriggi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Federica Andreis
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Veronica Premi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Nadia Liborio
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Claudio Codignola
Affiliation:
General Surgery Department, Fondazione Poliambulanza, Brescia, Italy
Maria Mazzocchi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Anna Rizzi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Tiziana Prochilo
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Luigina Rota
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Brunella Di Biasi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Paola Bertocchi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Chiara Abeni
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Chiara Ogliosi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Francesca Aroldi
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
Alberto Zaniboni*
Affiliation:
Oncology Department, Fondazione Poliambulanza, Brescia, Italy
*
Address correspondence and reprint requests to: Alberto Zaniboni, Fondazione Poliambulanza, via Bissolati 57, 25124 Brescia, Italy. E-mail: zanib@numerica.it
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Caregivers play a key role in the management of patients with cancer. However, some studies have suggested that caregivers have even more unmet needs than the patients.

Method:

To better identify the needs and changes in the lifestyles of the caregivers in our practice and to plan a targeted support project to decrease caregiver burden, we administered the Caregiver's QoL Index–Cancer (CQoLC) to 200 consecutive caregivers. This questionnaire assesses psychological well-being, the relationship with healthcare professionals, administration of finances, lifestyle disruption, and positive adaptation.

Results:

Our data showed that being a caregiver to a patient with metastatic disease negatively affected females mostly with regard to mental and emotional burden, while men complained more about their sexual life (42.3 vs. 33.6%), although this result was not significant. Some 93.5% of caregivers reported that they were pleased with their role, while 83.4% were concerned about financial difficulties.

Significance of results:

We strongly believe that early supportive care directed not only at patients but also to caregivers may improve the quality of life (QoL) in this population. We are currently developing a targeted support project to decrease caregiver burden.

Keywords

CancerCaregiversPsychological supportQuality of life
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 4 , August 2015 , pp. 865 - 873
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

AIOM–AIRTUM (2012). I numeri del cancro in Italia, 2012. Available at http://www.registri-tumori.it/PDF/AIOM2012/I_numeri_del_cancro_2012.pdf.Google Scholar
American Cancer Society (2012). Cancer facts and figures, 2012. Atlanta: American Cancer Society. Available at http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf.Google Scholar
Belgacem, B., Auclair, C., Fedor, M.-C., et al. (2013). A caregiver educational program improves quality of life and burden of cancer patients and their caregivers: A randomized clinical trial. European Journal of Oncology Nursing, 17(6), 870–876.Google Scholar
Braun, M., Mikulincer, M., Rydall, A., et al. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology, 25(30), 4829–4834.CrossRefGoogle ScholarPubMed
Candy, B., Jones, L., Drake, R., et al. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. The Cochrane Database of Systematic Reviews, 6, CD007617. doi: 10.1002/14651858.CD007617.pub2.Google Scholar
Cipolletta, S., Shams, M., Tonello, F., et al. (2013). Caregivers of patients with cancer: Anxiety, depression and distribution of dependency. Psycho-Oncology, 22(1), 133–139.CrossRefGoogle ScholarPubMed
Coristine, M., Crooks, D., Grunfeld, E., et al. (2003). Caregiving for women with advanced breast cancer. Psycho-Oncology, 12, 709–719.CrossRefGoogle ScholarPubMed
Deshields, T.L., Rihanek, A., Potter, P., et al. (2012). Psychosocial aspects of caregiving: Perceptions of cancer patients and family caregivers. Supportive Care in Cancer, 20(2), 349–356.Google Scholar
Dhruva, A., Lee, K., Paul, S.M., et al. (2012). Sleep–wake circadian activity rhythms and fatigue in family caregivers of oncology patients. Cancer Nursing, 35(1), 70–81.Google Scholar
Ferrell, B., Hanson, J. & Grant, M. (2013). An overview and evaluation of the oncology family caregiver project: Improving quality of life and quality of care for oncology family caregivers. Psycho-Oncology, 22(7), 1645–1652.CrossRefGoogle ScholarPubMed
Girgis, A., Lambert, S., Johnson, C., et al. (2013). Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. Journal of Oncology Practice, 9(4), 197–202.Google Scholar
Given, B. & Sherwood, P.R. (2006). Family care for the older person with cancer. Seminars in Oncology Nursing, 22(1), 43–50.CrossRefGoogle ScholarPubMed
Grov, E.K., Dahl, A.A., Moum, T., et al. (2005). Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Annals of Oncology, 16(7), 1185–1191.Google Scholar
Hanratty, B., Holland, P., Jacoby, A., et al. (2007). Financial stress and strain associated with terminal cancer: A review of the evidence. Palliative Medicine, 21(7), 595–607.CrossRefGoogle Scholar
Hartmann, M., Bazner, E., Wild, B., et al. (2010). Effects of interventions involving the family in the treatment of adult patients with chronic physical diseases: A meta-analysis. Psychotherapy and Psychosomatics, 79(3), 136–148.Google Scholar
Hayman, J.A., Langa, K.M., Kabeto, M.U., et al. (2001). Estimating the cost of informal caregiving for elderly patients with cancer. Journal of Clinical Oncology, 19(13), 3219–3225.Google Scholar
Hudson, P., Trauer, T., Kelly, B., et al. (2013). Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomized controlled trial. Psycho-Oncology, 22(9), 1987–1993.Google Scholar
Institute of Medicine (IOM) (2008). Retooling for an aging America: Building the health care workforce. Washington, DC: The National Academies Press. Available at http://www.nap.edu/openbook.php?record_id=12089.Google Scholar
Kim, Y. & Schulz, R. (2008). Family caregivers' strain: Comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20(5), 483–503.Google Scholar
Langford, D.J., Lee, K. & Miaskowski, C. (2012). Sleep disturbance interventions in oncology patients and family caregivers: A comprehensive review and meta-analysis. Sleep Medicine Reviews, 16(5), 397–414.Google Scholar
Levine, C., Halper, D., Peist, A., et al. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs (Project Hope), 29(1), 116–124.CrossRefGoogle ScholarPubMed
Marshall, J.L. (2011). Love the caregiver as much as the patient. Medscape, September 26. Available at http://www.medscape.com/viewarticle/749984.Google Scholar
Martire, L.M., Lustig, A.P., Schulz, R., et al. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23(6), 599–611.Google Scholar
Merckaert, I., Libert, Y., Lieutenant, F., et al. (2013). Desire for formal psychological support among caregivers of patients with cancer: Prevalence and implications for screening their needs. Psycho-Oncology, 22(6), 1389–1395.Google Scholar
Meyer, F., Zhang, B., Gao, X., et al. (2013). Associations between cognitive impairment in advanced cancer patients and psychiatric disorders in their caregivers. Psycho-Oncology. 22(4), 952–955.Google Scholar
Moroni, L., Sguazzin, C., Filipponi, L., et al. (2008). Caregiver need assessment: Uno strumento di analisi dei bisogni dei caregivers. Giornale Italiano di Medicina del Lavoro e di Ergonomia, 30(3), B84–B90.Google Scholar
Mosher, C.E., Champion, V.L., Azzoli, C.G., et al. (2013a). Economic and social changes among distressed family caregivers of lung cancer patients. Supportive Care in Cancer, 21(3), 819–826.Google Scholar
Mosher, C.E., Champion, V.L., Hanna, N., et al. (2013b). Support service use and interest in support services among distressed family caregivers of lung cancer patients. Psycho-Oncology, 22(7), 1549–1556.CrossRefGoogle ScholarPubMed
National Cancer Institute (NCI) (2013). Family caregivers in cancer: Roles and challenges (PDQ©). Available at http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/healthprofessional/page1/AllPagesfessional/.Google Scholar
NCCN (2013). NCCN guidelines on survivorship, version 1.2013. Washington, DC: National Comprehensive Cancer Network. Available at https://subscriptions.nccn.org/gl_login.aspx?ReturnURL=http://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf.Google Scholar
Northfield, S. & Nebauer, M. (2010). The caregiving journey for family members of relatives with cancer: How do they cope? Clinical Journal of Oncology Nursing, 14(5), 567–577.Google Scholar
Northouse, L.L. (2012). Helping patients and their family caregivers cope with cancer. Oncology Nursing Forum, 39(5), 500–506.CrossRefGoogle ScholarPubMed
Northouse, L.L., Katapodi, M.C., Song, L., et al. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: Cancer Journal for Clinicians, 60(5), 317–339.Google ScholarPubMed
Pugliese, P., Garufi, C., Perrone, M., et al. (2004). Quality of life and quality of care in advanced colorectal cancer patients. Annals of Oncology, 15(Suppl. 2), ii102–ii121.Google Scholar
Rabow, M.W., Hauser, J.M. & Adams, J. (2004). Supporting family caregivers at the end of life: “They don't know what they don't know.” The Journal of the American Medical Association, 291(4), 483–491.Google Scholar
Rhee, Y.S., Yun, Y.H., Park, S., et al. (2008). Depression in family caregivers of cancer patients: The feeling of burden as a predictor of depression. Journal of Clinical Oncology, 26(36), 5890–5895.Google Scholar
Rohleder, N., Marin, T.J., Ma, R., et al. (2009). Biologic cost of caring for a cancer patient: Dysregulation of pro- and anti-inflammatory signaling pathways. Journal of Clinical Oncology, 27(18), 2909–2915.Google Scholar
Ross, A., Sundaramurthi, T. & Bevans, M. (2012). A labor of love. Cancer Nursing, 36(6), 474–483.Google Scholar
Schumacher, K.L., Stewart, B.J., Archbold, P.G., et al. (2008). Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncology Nursing Forum, 35, 49–56.Google Scholar
Sorensen, S., Pinquart, M. & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356–372.Google Scholar
Vanderwerker, L.C., Laff, R.E., Kadan-Lottick, S., et al. (2005). Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. Journal of Clinical Oncology, 23(26), 6899–907.Google Scholar
Wadhwa, D., Burman, D., Swami, N., et al. (2013). Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho-Oncology, 22(2), 403–410.Google Scholar
Weitzner, M.A., Jacobsen, P.B., Wagner, H. Jr., et al. (1999). 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(1–2), 55–63.Google Scholar