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Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients

Published online by Cambridge University Press:  11 May 2018

Roberta Spatuzzi ,
Maria Velia Giulietti Open the ORCID record for Maria Velia Giulietti [Opens in a new window] ,
Marcello Ricciuti ,
Fabiana Merico ,
Paolo Fabbietti ,
Letizia Raucci ,
Domenico Bilancia ,
Claudia Cormio  and
Anna Vespa
Roberta Spatuzzi*
Affiliation:
Palliative Care Unit, “San Carlo” Hospital, Potenza, Italy
Maria Velia Giulietti
Affiliation:
Department of Neurology, INRCA-IRCCS National Institute of Health and Science on Aging, Ancona, Italy
Marcello Ricciuti
Affiliation:
Palliative Care Unit, “San Carlo” Hospital, Potenza, Italy
Fabiana Merico
Affiliation:
Palliative Care Center Hospice “Casa di Betania,” Tricase (Lecce), Italy
Paolo Fabbietti
Affiliation:
Biostatistical Center, INRCA-IRCCS National Institute of Health and Science on Aging, Ancona, Italy
Letizia Raucci
Affiliation:
Hematology, “San Carlo” Hospital, Potenza, Italy
Domenico Bilancia
Affiliation:
Medical Oncology, “San Carlo” Hospital, Potenza, Italy
Claudia Cormio
Affiliation:
Experimental Unit of Psycho-oncology, National Research Centre “Giovanni Paolo II,” Bari, Italy
Anna Vespa
Affiliation:
Department of Neurology, INRCA-IRCCS National Institute of Health and Science on Aging, Ancona, Italy
*
Author for correspondence: Roberta Spatuzzi, Palliative Care Unit, “San Carlo” Hospital, Via Potito Petrone, 85100, Potenza, Italy. E-mail: roberta.spatuzzi@yahoo.com
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Abstract

Objective

The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease.

Method

This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.

Result

The high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).

Significance of results

This study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

Keywords

Spiritual well-beingburdenquality of lifecaregivercancer
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 3 , June 2019 , pp. 294 - 299
Copyright
Copyright © Cambridge University Press 2018 

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References

Adams, RN et al. (2014) Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients. Psychooncology 23(10), 1178–1184.10.1002/pon.3558Google Scholar
Apolone, G and Mosconi, P (1998) The Italian SF-36 Health Survey: Translation, validation and norming. Journal of Clinical Epidemiology 51(11), 1025–1036.10.1016/S0895-4356(98)00094-8Google Scholar
Applebaum, AJ and Breitbart, W (2013) Care for the cancer caregiver: A systematic review. Palliative & Supportive Care 11(3), 231–252.10.1017/S1478951512000594Google Scholar
Applebaum, AJ et al. (2014) Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers. Palliative & Supportive Care 12(2), 139–148.10.1017/S1478951513000084Google Scholar
Brazier, JE et al. (1992) Validating the SF-36 health survey questionnaire: new outcome measure for primary care. British Medical Journal 305(6846), 160–164.10.1136/bmj.305.6846.160Google Scholar
Breitbart, W et al. (2012) Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology 30(12), 1304–1309.10.1200/JCO.2011.36.2517Google Scholar
Breitbart, W et al. (2015) Meaning-centered group psychotherapy: An effective intervention for improving psychological well-being in patients with advanced cancer. Journal of Clinical Oncology 33(7), 749–754.10.1200/JCO.2014.57.2198Google Scholar
Bullinger, M et al. (1998) Translating health status questionnaires and evaluating their quality: The IQOLA project approach. Journal of Clinical Epidemiology 51(11), 913–923.10.1016/S0895-4356(98)00082-1Google Scholar
Caserta, MS, Lund, DA, and Wright, SD (1996) Exploring the Caregiver Burden Inventory (CBI): further evidence for a multidimensional view of burden. International Journal of Aging and Human Development 43(1), 21–34.10.2190/2DKF-292P-A53W-W0A8Google Scholar
Clay, KS, Talley, C, and Young, KB (2010) Exploring spiritual well-being among survivors of colorectal and lung cancer. Journal of Religion & Spirituality in Social Work 29(1), 14–32.10.1080/15426430903479247Google Scholar
Colgrove, LA, Kim, Y, and Thompson, N (2007) The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Annals of Behavioral Medicine 33(1), 90–98.10.1207/s15324796abm3301_10Google Scholar
Cotton, SP et al. (1999) Exploring the relationships among spiritual well-being, quality of life, and psychological adjustment in women with breast cancer. Psychooncology 8(5), 429–438.10.1002/(SICI)1099-1611(199909/10)8:5<429::AID-PON420>3.0.CO;2-P3.0.CO;2-P>Google Scholar
Daaleman, TP and Frey, BB (2004) The spirituality index of well-being: A new instrument for health-related quality-of-life. Annals of Family Medicine 2(5), 499–503.10.1370/afm.89Google Scholar
de Araújo Lamino, D, Turrini, RN, and Kolcaba, K (2014) Cancer patients caregivers comfort. Revista da Escola de Enfermagem da USP 48(2), 278–284.10.1590/S0080-623420140000200012Google Scholar
Delgado-Guay, MO et al. (2013) Spirituality, religiosity, and spiritual pain among caregivers of patients with advanced cancer. American Journal of Hospice and Palliative Care 30(5), 455–461.10.1177/1049909112458030Google Scholar
Edwards, A et al. (2010) The understanding of spirituality and the potential role of spiritual care in end-of life and palliative care: A meta-study of qualitative research. Journal of Palliative Medicine 24(8), 753–770.10.1177/0269216310375860Google Scholar
El Nawawi, NM, Balboni, MJ, and Balboni, TA (2012) Palliative care and spiritual care: The crucial role of spiritual care in the care of patients with advanced illness. Current Opinion in Supportive and Palliative Care 6(2), 269–274.10.1097/SPC.0b013e3283530d13Google Scholar
Ferrell, BR et al. (1996) Quality of life in breast cancer. Cancer Practice 4(6), 331–340.Google Scholar
Gandek, B et al. (1998) Tests of data quality, scaling assumptions, and reliability of the SF-36 in eleven countries: Results from the IQOLA project. International Quality of Life Assessment. Journal of Clinical Epidemiology 51(11), 1149–1158.10.1016/S0895-4356(98)00106-1Google Scholar
Gardner, MH et al. (2017) Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psychooncology 26(1), 125–132.10.1002/pon.4014Google Scholar
Given, B et al. (2001) Caregiver role strain. In Maas, N et al. (eds), Nursing care of older adults diagnosis: Outcome and interventions. St Louis: Mosby.Google Scholar
Griggs, JJ et al. (2007) Vitality, mental health, and satisfaction with information after breast cancer. Patient Education and Counseling 66(1), 58–66.10.1016/j.pec.2006.10.008Google Scholar
Jacobson, HL, Hall, MEL, and Anderson, TA (2013) Theology and the body: Sanctification and bodily experiences. Psychology of Religion and Spirituality 5, 41–50.10.1037/a0028042Google Scholar
Kim, Y et al. (2011) Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psychooncology 20(7), 762–770.10.1002/pon.1778Google Scholar
Kim, Y and Given, BA (2008) Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer 112(11 Suppl), 2556–2568.10.1002/cncr.23449Google Scholar
Lazarus, RS and Folkman, S (1984) Stress, appraisal and coping. New York: Springer Publishing Company.Google Scholar
Lazarus, RS (1993) Coping theory and research: Past, present, and future. Psychosomatic Medicine 55(3), 234–247.10.1097/00006842-199305000-00002Google Scholar
Newberry, AG et al. (2013) Exploring spirituality in family caregivers of patients with primary malignant brain tumors across the disease trajectory. Oncology Nursing Forum 40(3), 119–125.10.1188/13.ONF.E119-E125Google Scholar
Nix, GA et al. (1999) Revitalization through self-regulation: The effects of autonomous and controlled motivation on happiness and vitality. Journal of Experimental Social Psychology 35, 266–284.10.1006/jesp.1999.1382Google Scholar
Novak, M and Guest, CI (1989) Application of a multidimensional Caregiver Burden Inventory. The Gerontologist 29(6), 798–803.10.1093/geront/29.6.798Google Scholar
Novak, M and Guest, C (1992) A comparison of the impact of institutionalization on spouse and nonspouse caregivers. Journal of Applied Gerontology 11(4), 379–394.10.1177/073346489201100401Google Scholar
Marvardi, M et al. (2005) Study Group on Brain Aging, Italian Society of Gerontology and Geriatrics. The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study. Aging Clinical and Experimental Research 17(1), 46–53.10.1007/BF03337720Google Scholar
Oken, MM et al. (1982). Toxicity and response criteria of the Eastern Cooperative Oncology Group. American Journal of Clinical Oncology 5(6), 649–655.10.1097/00000421-198212000-00014Google Scholar
Park, CL (2007) Religiousness/spirituality and health: A meaning systems perspective. Journal of Behavioral Medicine 30(4), 319–328.10.1007/s10865-007-9111-xGoogle Scholar
Powell, LH, Shahabi, L, and Thoresen, CE (2003) Religion and spirituality: Linkages to physical health. American Psychologist 58(1), 36–52.10.1037/0003-066X.58.1.36Google Scholar
Prince, P et al. (2015) Spiritual well-being in Hispanic and non-Hispanic survivors of allogeneic hematopoietic stem cell transplantation. Journal of Psychosocial Oncology 33(6), 635–654.10.1080/07347332.2015.1082167Google Scholar
Puchalski, CM (2003) Caregiver stress: The role of spirituality in the lives of family/ friends and professional caregivers. Americus: GA: Caregiving Book Series.Google Scholar
Puchalski, CM (2012) Spirituality in the cancer trajectory. Annals of Oncology 23, 49–55.10.1093/annonc/mds088Google Scholar
Puchalski, CM et al. (2014) Improving the spiritual dimension of whole person care: Reaching national and international consensus. Journal of Palliative Medicine 17(6), 642–656.10.1089/jpm.2014.9427Google Scholar
Rabow, MW, Hauser, JM, and Adams, J (2004) Supporting family caregivers at the end of life: “They don't know what they don't know. Journal of the American Medical Association 291, 483–491.10.1001/jama.291.4.483Google Scholar
Ryan, RM and Frederick, C (1997) On energy, personality, and health: subjective vitality as a dynamic reflection of well-being. Journal of Personality 65(3), 529–565.10.1111/j.1467-6494.1997.tb00326.xGoogle Scholar
Sankhe, A et al. (2016) Spiritual care therapy on quality of life in cancer patients and their caregivers: A prospective non-randomized single-cohort study. Journal of Religion and Health 56(2), 725–731.10.1007/s10943-016-0324-6Google Scholar
Siddall, PJ, Lovell, M, and MacLeod, R (2015) Spirituality: What is its role in pain medicine? Pain Medicine 16(1), 1–60.10.1111/pme.12511Google Scholar
Skalla, KA et al. (2013) Multidimensional needs of caregivers for patients with cancer. Clinical Journal of Oncology Nursing 17(5), 500–506.10.1188/13.CJON.17-05APGoogle Scholar
Sun, V et al. (2016) Palliative care and spiritual well-being in lung cancer patients and family caregivers. Psychooncology 25(12), 1448–1455.10.1002/pon.3987Google Scholar
Tan, JY et al. (2015) Caring for the caregiver while caring for the patient: Exploring the dyadic relationship between patient spirituality and caregiver quality of life. Supportive Care in Cancer 23(12), 3403–3406.10.1007/s00520-015-2920-5Google Scholar
Underwood, SM et al. (2006) Cancer in U.S. ethnic and racial minority populations. Annual Review of Nursing Research 22, 217–263.10.1891/0739-6686.22.1.217Google Scholar
Vespa, A et al. (2011) Evaluation of intrapsychic factors, coping styles, and spirituality of patients affected by tumors. Psychooncology 20(1), 5–11.10.1002/pon.1719Google Scholar
Wagner, AK et al. (1998) Cross-cultural comparisons of the content of SF-36 translations across 10 countries: Results from the IQOLA project. International Quality of Life Assessment. Journal of Clinical Epidemiology 51(11), 925–932.10.1016/S0895-4356(98)00083-3Google Scholar
Ware, JE, Kosinski, M, and Keller, SD (1994) SF-36 physical and mental health summary scales: A user's manual. Boston, MA: The Health Institute.Google Scholar
Whitford, HS, Olver, IN, and Peterson, MJ (2008) Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology 17(11), 1121–1128.10.1002/pon.1322Google Scholar