Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-20T04:06:19.181Z Has data issue: false hasContentIssue false

Exploring the perception of survivors on the bidirectional impact between cancer and their social contexts: A mixed-methods approach

Published online by Cambridge University Press:  07 March 2019

Elizabeth Palmer Kelly
Affiliation:
The Ohio State University Comprehensive Cancer Center, Columbus, OH
Julia L. Agne
Affiliation:
Department of Internal Medicine, Hospice and Palliative Medicine, The Ohio State University, Wexner Medical Center, Columbus, OH
Timothy M. Pawlik*
Affiliation:
Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
*
Author for correspondence: Timothy M. Pawlik, M.D., M.P.H., Ph.D., F.A..CS., F.R.A.C.S. (Hon.), Professor and Chair, Department of Surgery, The Urban Meyer III and Shelley Meyer Chair for Cancer Research, Professor of Surgery, Oncology, Health Services Management and Policy, The Ohio State University Wexner Medical Center, 395 W. 12th Ave., Suite 670. Columbus OH, 43210. E-mail: [email protected]

Abstract

Objective

The purpose of the current study was to use a mixed-methods approach to assess the perspective of cancer survivors on the bidirectional impact between cancer and their social contexts.

Method

A fixed concurrent triangulation mixed-methods survey design was used with open- and closed-ended questions that were predetermined and administered to participants. Quantitative items included demographic questions and the Life Impact Checklist. Qualitative questions were designed to explore the bidirectional impact between the patient and specific contexts including spirituality/faith, the spousal/partner relationship, and the family. A cross-sectional descriptive approach was used to evaluate the quantitative items and the constant comparative method guided the analysis of open-ended questions.

Result

Among 116 participants (mean age 58.4 years), the majority were female (66.7%) with breast cancer (27.9%). Nearly one-half the respondents endorsed a positive impact of cancer on their spirituality/faith, but qualitative results suggested less of a bidirectional impact. The importance of the spouse/partner during the cancer experience was emphasized, including the subthemes of instrumental and emotional support; however, there was often a negative impact of cancer on the spouse/partner relationship, including sexual functioning. Survivors indicated family members provided instrumental and emotional support, but not as regularly or directly as a spouse/partner.

Significance of results

Social contexts are important among cancer survivors, with many cancer survivors relying more on their spouse/partner than other family members for support. The cancer experience is stressful not only for survivors, but also for individuals in their social contexts and relationships.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2019 

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

Balogh, EP, Ganz, PA, Murphy, SB, et al. (2011) Patient-centered cancer treatment planning: Improving the quality of oncology care. Summary of an Institute of Medicine Workshop. The Oncologist 16(12), 18001805. https://doi.org/10.1634/theoncologist.2011-0252Google Scholar
Bellizzi, KM, Smith, A, Schmidt, S, et al. (2012) Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer, 118(20), 51555162. https://doi.org/http://dx.doi.org/10.1002/cncr.27512Google Scholar
Bellizzi, KM, Miller, MF, Arora, NK, et al. (2007) Positive and negative life changes experienced by survivors of non-Hodgkin's lymphoma. Annals of Behavioral Medicine 34(2), 188199. https://doi.org/10.1007/BF02872673Google Scholar
Bellizzi, KM, Smith, AW, Reeve, BB, et al. (2010) Posttraumatic growth and health-related quality of life in a racially diverse cohort of breast cancer survivors. Journal of Health Psychology 15(4), 615626. https://doi.org/10.1177/1359105309356364Google Scholar
Bowen, M (1966) The use of family theory in clinical practice. Comprehensive Psychiatry 7(5), 345374. https://doi.org/10.1016/S0010-440X(66)80065-2Google Scholar
Bronfenbrenner, U (1992) Ecological systems theory. In Six theories of child development: Revised formulations and current issues, vol. 6, pp. 187249. Gateshead, Tyne, and Wear, UK: Athenaeum Press. https://doi.org/10.1037/10518-046Google Scholar
Christie, DRH, Sharpley, CF, and Bitsika, V (2015) Why do patients regret their prostate cancer treatment? A systematic review of regret after treatment for localized prostate cancer. Psycho-Oncology 24(9), 10021011. https://doi.org/10.1002/pon.3776Google Scholar
Cohen, SR, Sawatzky, R, Russell, LB, et al. (2017) Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire–Revised. Palliative medicine 31(2), 120129.Google Scholar
Creswell, JW (2003) Research design: Qualitative, quantitative, and mixed methods approaches. Research Design Qualitative Quantitative and Mixed Methods Approaches 326. https://doi.org/10.3109/08941939.2012.723954Google Scholar
Edwards, B and Clarke, V (2004) The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients' illness characteristics on depression and anxiety. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer 13(8), 562576.Google Scholar
Ell, K, Nishimoto, R, Mediansky, L, et al. (1992) Social relations, social support and survival among patients with cancer. Journal of Psychosomatic Research 36(6), 531541. https://doi.org/10.1016/0022-3999(92)90038-4Google Scholar
Fife, BL, Weaver, MT, Cook, WL, et al. (2013) Partner interdependence and coping with life-threatening illness: The impact on dyadic adjustment. Journal of Family Psychology 27(5), 702711. https://doi.org/10.1037/a0033871Google Scholar
Ganz, PA, Desmond, KA, Leedham, B, et al. (2002) Quality of life in long-term, disease-free survivors of breast cancer: A follow-up study. Journal of the National Cancer Institute 94(1), 3949. https://doi.org/10.1093/jnci/94.1.39Google Scholar
Glaser, BG and Strauss, AL (1967) The Discovery of grounded theory: Strategies for qualitative research. Observations (Vol. 1). https://doi.org/10.2307/2575405Google Scholar
Hagedoorn, M, Buunk, BP, Kuijer, RG, et al. (2000) Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-Oncology 9(3), 232242. https://doi.org/10.1002/1099-1611(200005/06)9:3<232::AID-PON458>3.0.CO;2-J3.0.CO;2-J>Google Scholar
Harris, PA, Scott, KW, Lebo, L, et al. (2012) ResearchMatch: A national registry to recruit volunteers for clinical research. Academic Medicine 87(1), 6673. https://doi.org/10.1097/ACM.0b013e31823ab7d2Google Scholar
Hassan, E (2005) Recall bias can be a threat to retrospective and prospective research designs. The Internet Journal of Epidemiology 3(2), 111. https://doi.org/10.5580/2732Google Scholar
Holland, JC, Kash, KM, Passik, S, et al. (1998) A brief spiritual beliefs inventory for use in quality of life research in life-threatening illness. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer 7(6), 460469.Google Scholar
Holland, JC, Passik, S, Kash, KM, et al. (1999) The role of religious and spiritual beliefs in coping with malignant melanoma. Psycho-Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer 8(1), 1426.Google Scholar
IBM (2016) IBM SPSS - IBM analytics. IBM SPSS Software. Retrieved from http://www.ibm.com/analytics/us/en/technology/spss/Google Scholar
Johnson, S, Butow, P, Kerridge, I, et al. (2016) Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families, and healthcare providers. Psycho-Oncology 25(4), 362386. https://doi.org/10.1002/pon.3926Google Scholar
Kayser, K, Watson, LE, and Andrade, JT (2007) Cancer as a “we-disease”: Examining the process of coping from a relational perspective. Families, Systems, & Health 25(4), 404.Google Scholar
Koenig, HG (2012) Religion, spirituality, and health: The research and clinical implications. ISRN Psychiatry 2012, 278730. https://doi.org/10.5402/2012/278730Google Scholar
Kornblith, AB and Ligibe, J (2003) Psychosocial and sexual functioning of survivors of breast cancer. Seminars in Oncology 30(6), 799813. https://doi.org/10.1053/j.seminoncol.2003.08.025Google Scholar
Krumpal, I (2013) Determinants of social desirability bias in sensitive surveys: A literature review. Quality and Quantity 47(4), 20252047. https://doi.org/10.1007/s11135-011-9640-9Google Scholar
Laidsaar-Powell, R, Butow, P, Charles, C, et al. (2017) The TRIO framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making. Patient Education and Counseling 100(11), 20352046. https://doi.org/10.1016/j.pec.2017.05.014Google Scholar
Laidsaar-Powell, RC, Butow, PN, Bu, S, et al. (2013) Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations. Patient Education and Counseling 9(1), 313. https://doi.org/10.1016/j.pec.2012.11.007Google Scholar
Li, Q, Lin, Y, Liu, X, et al. (2014) A systematic review on patient-reported outcomes in cancer survivors of randomised clinical trials: Direction for future research. Psycho-Oncology, 23(7), 721730. https://doi.org/10.1002/pon.3504Google Scholar
Li, Q and Loke, AY (2014) A systematic review of spousal couple-based intervention studies for couples coping with cancer: Direction for the development of interventions. Psycho-Oncology 23(7), 731739. https://doi.org/10.1002/pon.3535Google Scholar
Li, QP, Mak, YW, and Loke, AY (2013) Spouses’ experience of caregiving for cancer patients: A literature review. International Nursing Review 60(2), 178187. https://doi.org/10.1111/inr.12000Google Scholar
McCormack, LA, Treiman, K, Rupert, D, et al. (2011) Measuring patient-centered communication in cancer care: A literature review and the development of a systematic approach. Social Science & Medicine (1982) 72(7), 10851095. https://doi.org/10.1016/j.socscimed.2011.01.020Google Scholar
Milberg, A, Wåhlberg, R, and Krevers, B (2014) Patients' sense of support within the family in the palliative care context: what are the influencing factors? Psycho-Oncology 23(12), 13401349.Google Scholar
Montazeri, A (2009) Quality of life data as prognostic indicators of survival in cancer patients: An overview of the literature from 1982 to 2008. Health and Quality of Life Outcomes 7, 102. https://doi.org/10.1186/1477-7525-7-102Google Scholar
Morreale, MK (2011) The impact of cancer on sexual function. Advances in Psychosomatic Medicine 31, 7282. https://doi.org/10.1159/000328809Google Scholar
National Cancer Institute (2016) Statistics - Office of Cancer Survivorship. Available from https://cancercontrol.cancer.gov/ocs/statistics/statistics.htmlGoogle Scholar
Nausheen, B, Gidron, Y, Peveler, R, et al. (2009) Social support and cancer progression: A systematic review. Journal of Psychosomatic Research 67(5), 403415. https://doi.org/10.1016/j.jpsychores.2008.12.012Google Scholar
Northouse, L (1984) The impact of cancer on the family: An overview. International Journal of Psychiatry in Medicine 14(3), 215242. https://doi.org/10.2190/C8Y5-4Y2W-WV93-QDATGoogle Scholar
Orom, H, Underwood, W, Cheng, Z, et al. (2018) Relationships as medicine: Quality of the physician-patient relationship determines physician influence on treatment recommendation adherence. Health Services Research 53(1), 580596. https://doi.org/10.1111/1475-6773.12629Google Scholar
Pargament, KI, Koenig, HG, Tarakeshwar, N, et al. (2004) Religious coping methods as predictors of psychological, physical and spiritual outcomes among medically ill elderly patients: A two-year longitudinal study. Journal of Health Psychology 9(6), 713730. https://doi.org/10.1177/1359105304045366Google Scholar
Peteet, JR and Balboni, MJ (2013) Spirituality and religion in oncology. CA: A Cancer Journal for Clinicians 63(4), 280289. https://doi.org/10.3322/caac.21187Google Scholar
Puchalski, CM (2012) Spirituality in the cancer trajectory. Annals of Oncology 23(Suppl 3), 4955. https://doi.org/10.1093/annonc/mds088Google Scholar
Puchalski, CM (2013) Integrating spirituality into patient care: An essential element of person-centered care. Polskie Archiwum Medycyny Wewnetrznej 12(9), 491497. https://doi.org/10.1016/j.ihj.2014.03.023Google Scholar
QSR International (2012) QSR International. NVivo. Retrieved from http://qsrinternational.com/Google Scholar
Reja, U, Manfreda, K, Hlebec, V, et al. (2003) Open-ended vs. close-ended questions in web questionnaires. Developments in Applied Statistics 19, 159177. https://doi.org/10.1016/0040-6031(92)85160-WGoogle Scholar
Roland, KB, Rodriguez, JL, Patterson, JR , et al. (2013) A literature review of the social and psychological needs of ovarian cancer survivors. Psycho-Oncology 22(11), 24082418. https://doi.org/10.1002/pon.3322Google Scholar
Rolland, JS (2005) Cancer and the family: An integrative model. Cancer, 104(11 suppl), 25842595. https://doi.org/10.1002/cncr.21489Google Scholar
Sameroff, AJ and Mackenzie, MJ (2003). Research strategies for capturing transactional models of development: The limits of the possible. Development and Psychopathology 15(3), 613640. https://doi.org/10.1017/S0954579403000312Google Scholar
Sammarco, A (2001) Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nursing 24(3), 212219. https://doi.org/10.1097/00002820-200106000-00010Google Scholar
Savel, RH and Munro, CL (2014) The importance of spirituality in patient-centered care. American Journal of Critical Care 23(4), 276278. https://doi.org/10.4037/ajcc2014328Google Scholar
Shin, DW, Cho, J, Roter, DL, et al. (2013) Preferences for and experiences of family involvement in cancer treatment decision-making: Patient-caregiver dyads study. Psycho-Oncology 22(11), 26242631. https://doi.org/10.1002/pon.3339Google Scholar
Siminoff, LA, Zyzanski, SJ, Rose, JH, et al. (2008) The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF): A new measure. Psycho-Oncology 17(12). https://doi.org/10.1002/pon.1350Google Scholar
Weeks, JC, Catalano, PJ, Cronin, A, et al. (2012) Patients’ Expectations about effects of chemotherapy for advanced cancer. New England Journal of Medicine 367(17), 16161625. https://doi.org/10.1056/NEJMoa1204410Google Scholar
Weihs, K, Reiss, D, Baider, L, et al. (1996). Family reorganization in response to cancer: A developmental perspective. Cancer and the Family February, 3–29. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=1996-98700-001&site=ehost-liveGoogle Scholar
Williams, SW, Hanson, LC, Boyd, C, et al. (2008) Communication, decision making, and cancer: What African Americans want physicians to know. Journal of Palliative Medicine 11(9), 12211226. https://doi.org/10.1089/jpm.2008.0057Google Scholar
Winner, M, Wilson, A, Ronnekleiv-Kelly, S, et al. (2017) A Singular hope: How the discussion around cancer surgery sometimes fails. Annals of Surgical Oncology 24(1), 3137. https://doi.org/10.1245/s10434-016-5564-xGoogle Scholar
Wintre, MG and Gates, SK (2006) Relationships with parents, spousal reciprocity, and psychological distress in middle-age adults. Journal of Adult Development 13(2), 8494.Google Scholar
Wright, AA, Zhang, B, Ray, A, et al. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association 300(14), 16651673. https://doi.org/10.1001/jama.300.14.1665Google Scholar
Supplementary material: File

Palmer Kelly et al. supplementary material

Table S1

Download Palmer Kelly et al. supplementary material(File)
File 15.9 KB