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Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

Published online by Cambridge University Press:  02 May 2017

Yoko Naoki ,
Yoshinobu Matsuda ,
Isseki Maeda ,
Hideka Kamino ,
Yoko Kozaki ,
Akihiro Tokoro ,
Norimasa Maki  and
Minoru Takada
Yoko Naoki
Affiliation:
Department of Internal Medicine, Tohoku University Graduate School of Medicine, Sendai, Japan
Yoshinobu Matsuda*
Affiliation:
Department of Psychosomatic Internal Medicine and Supportive and Palliative Care Team, National Hospital Organization Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan
Isseki Maeda
Affiliation:
Garatia Hospital Hospice, Minoo, Osaka, Japan
Hideka Kamino
Affiliation:
Home Care Support Center, Hanwa Daiichi Senboku Hospital, Sakai, Osaka, Japan
Yoko Kozaki
Affiliation:
Department of Home Healthcare Sales Promotion, Teijin Home Healthcare Limited, Sakai, Osaka, Japan
Akihiro Tokoro
Affiliation:
Department of Psychosomatic Internal Medicine and Supportive and Palliative Care Team, National Hospital Organization Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan
Norimasa Maki
Affiliation:
Maki Clinic, Sakai, Osaka, Japan
Minoru Takada
Affiliation:
Department of Internal Medicine, Hanwa Daini Senboku Hospital, Sakai, Osaka, Japan
*
Address correspondence and reprint requests to: Yoshinobu Matsuda, Department of Psychosomatic Internal Medicine and the Supportive and Palliative Care Team, National Hospital Organization, Kinki-Chuo Chest Medical Center, 1180 Nagasone-cho, Kita-ku, Sakai, Osaka, 591-0021, Japan. E-mail: ymatsuda@kch.hosp.go.jp.
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Abstract

Objective:

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Method:

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Results:

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Significance of results:

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Keywords

Family satisfactionCaregiver burdenEnd-of-life careCancer
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 260 - 268
Copyright
Copyright © Cambridge University Press 2017 

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References

REFERENCES

Arai, Y., Kudo, K., Hosokawa, T., et al. (1997). Reliability and validity of the Japanese version of the Zarit Caregiver Burden Interview. Psychiatry and Clinical Neurosciences, 51(5), 281–287. Available from http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.1997.tb03199.x/pdf.Google Scholar
Bishop, M.M., Beaumont, J.L., Hahn, E.A., et al. (2007). Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. Journal of Clinical Oncology, 25(11), 1403–1411. Available from http://ascopubs.org/doi/10.1200/JCO.2006.07.5705.CrossRefGoogle ScholarPubMed
Braun, M., Mikulincer, M., Rydall, A., et al. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology; 25(30), 4829–4834. Available from 17947732.CrossRefGoogle ScholarPubMed
Chang, Y.J., Kwon, Y.C., Lee, W.J., et al. (2013). Burdens, needs and satisfaction of terminal cancer patients and their caregivers. Asian Pacific Journal of Cancer Prevention 14(1), 209–216. Available from http://journal.waocp.org/article_27306_1336e0535272ff4f4f6c27930088e9dd.pdf.CrossRefGoogle ScholarPubMed
Dawson, N.J. (1991). Need satisfaction in terminal care settings. Social Science & Medicine, 32(1), 83–87.Google Scholar
Fletcher, B.S., Paul, S.M., Dodd, M.J., et al. (2008). Prevalence, severity, and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer. Journal of Clinical Oncology, 26(4), 599–605.Google Scholar
Garlo, K., O'Leary, J.R., Van Ness, P.H., et al. (2010). Burden in caregivers of older adults with advanced illness. Journal of the American Geriatrics Society, 58(12), 2315–2322. Epub ahead of print Nov 18. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3058825/.Google Scholar
Goldstein, N.E., Concato, J., Fried, T.R., et al. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20(1), 38–43.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Gao, W. (2008). Caregiver assessment of patients with advanced cancer: Concordance with patients, effect of burden and positivity. Health and Quality of Life Outcomes, 6, 42. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2435233/.Google Scholar
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), 656–668. Epub ahead of print Jul 6.Google ScholarPubMed
Hwang, S.S., Chang, V.T., Alejandro, Y., et al. (2003). Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center. Palliative & Supportive Care, 1(4), 319–329.Google Scholar
Jansma, F.F., Schure, L.M. & de Jong, B.M. (2005). Support requirements for caregivers of patients with palliative cancer. Patient Education and Counseling, 58(2), 182–186.CrossRefGoogle ScholarPubMed
Johansson, M.C., Axelsson, B. & Danielson, E. (2007). Caregivers' perceptions about terminally ill family members' quality of life. European Journal of Cancer Care, 16(4), 338–345.Google Scholar
Kristjanson, L.J. (1993). Validity and reliability testing of the FAMCARE Scale: Measuring family satisfaction with advanced cancer care. Social Science & Medicine, 36(5), 693–701.CrossRefGoogle ScholarPubMed
Lo, C., Burman, D., Hales, S., et al. (2009). The FAMCARE–Patient scale: Measuring satisfaction with care of outpatients with advanced cancer. European Journal of Cancer, 45(18), 3182–3188. Epub ahead of print Sep 26.CrossRefGoogle ScholarPubMed
Morita, T., Chihara, S. & Kashiwagi, T. (2002). A scale to measure satisfaction of bereaved family receiving inpatient palliative care. Palliative Medicine, 16(2), 141–150.Google Scholar
Northouse, L.L., Katapodi, M.C., Song, L., et al. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60(5), 317–339. Epub ahead of print Aug 13. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946584/.Google ScholarPubMed
Ozcelik, H., Cakmak, D.E., Fadiloglu, C., et al. (2015). Determining the satisfaction levels of the family members of patients with advanced-stage cancer. Palliative & Supportive Care, 13(3), 741–747. Epub ahead of print Jun 3, 2014.Google Scholar
Park, B., Kim, S.Y., Shin, J.Y., et al. (2013). Prevalence and predictors of anxiety and depression among family caregivers of cancer patients: A nationwide survey of patient–family caregiver dyads in Korea. Supportive Care in Cancer, 21(10), 2799–2807. Epub ahead of print Jun 1.Google Scholar
Pottie, C.G., Burch, K.A., Thomas, L.P., et al. (2014). Informal caregiving of hospice patients. Journal of Palliative Medicine, 17(7), 845–856.CrossRefGoogle ScholarPubMed
Rhodes, R.L., Mitchell, S.L., Miller, S.C., et al. (2008). Bereaved family members' evaluation of hospice care: What factors influence overall satisfaction with services? Journal of Pain and Symptom Management, 35(4), 365–371.Google Scholar
Ringdal, G.I., Jordhoy, M.S. & Kaasa, S. (2002). Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. Journal of Pain and Symptom Management, 24(1), 53–63.CrossRefGoogle Scholar
Ringdal, G.I., Jordhoy, M.S. & Kaasa, S. (2003). Measuring quality of palliative care: Psychometric properties of the FAMCARE Scale. Quality of Life Research, 12(2), 167–176.CrossRefGoogle ScholarPubMed
Rossi Ferrario, S., Zotti, A.M., Massara, G., et al. (2003). A comparative assessment of psychological and psychosocial characteristics of cancer patients and their caregivers. Psycho-Oncology, 12(1), 1–7.Google Scholar
Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12(Suppl. 1), 33–41.Google Scholar
Schulz, R. (2013). Research priorities in geriatric palliative care: Informal caregiving. Journal of Palliative Medicine, 16(9), 1008–1012. Epub ahead of print Jul 24. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776612/.CrossRefGoogle ScholarPubMed
Shimozuma, K., Yamaguchi, M., Saito, S., et al. (2008). Translation of the FAMCARE Scale into Japanese. Report of Item History. Unpublished paper.Google Scholar
Stenberg, U., Ruland, C.M. & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19(10), 1013–1025.Google Scholar
Teresi, J.A., Ornstein, K., Ocepek-Welikson, K., et al. (2014). Performance of the Family Satisfaction with the End-of-Life Care (FAMCARE) measure in an ethnically diverse cohort: Psychometric analyses using item response theory. Supportive Care in Cancer, 22(2), 399–408. Epub ahead of print Oct 5, 2013. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4151612/.Google Scholar
Tokoro, A., Ikeyama, H., Matsuda, Y., et al. (2009). The usefulness and limitations of outreach home hospice care provided by cancer specialists in cooperation with home-care physicians [in Japanese]. Kanwairyougaku, 11, 214–221.Google Scholar
World Health Organization (2002). National Cancer Control Programmes : Policies and Managerial Guidelines, 2nd ed. Geneva: World Health Organization; 2002. Available from http://www.who.int/cancer/media/en/408.pdf.Google Scholar
Yamagishi, A., Morita, T., Miyashita, M., et al. (2012). Preferred place of care and place of death of the general public and cancer patients in Japan. Supportive Care in Cancer, 20(10), 2575–2582. Epub ahead of print Jan 24.CrossRefGoogle ScholarPubMed
Zarit, S.H., Reever, K.E. & Bach-Peterson, J. (1980), Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655.CrossRefGoogle ScholarPubMed
Zarit, S.H., Orr, N.K., Zarit, J.M. (1985). The Hidden Victims of Alzheimer's Disease: Families under Stress. New York: New York University Press.Google Scholar