Abstract
About 20% of adults diagnosed with cancer are parents of children under the age of 18 years. Parents diagnosed with cancer often seek assistance from their providers when it comes to deciding how to tell their children about the diagnosis. Extant literature illustrates that providers are not adequately prepared to engage with, or support, patients and their family members in these processes. A survey was constructed for this inquiry. Findings from 56 providers (mean years of experience = 16, SD = 13.02) illustrate they primarily receive education about working with patients and their families on-the-job. Similar results were found related to education, specifically on how to support communication efforts between parents and children during cancer diagnosis conversations. Mental health providers were more receptive toward helping parents gather information about cancer (and then facilitating conversations about it with children) as compared to biomedical providers. Medical and graduate school curricula should include principles of the Patient-Centered Medical Home to create a standard of practice that includes family members in patient care. Continued training during residency and internship to educate providers about all professionals working in integrated teams is indicated. Knowledge about the roles that various providers play could also increase reliable resource provision and effective interdisciplinary collaboration.
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References
American Academy of Family Physicians (2007). Joint principles of the patient-centered medical home. https://www.aafp.org/dam/AAFP/documents/practice_management/pcmh/initiatives/PCMHJoint.pdf
American Association for Marriage and Family Therapy and Hodgson, J., Lamson, A., Mendenhall, T., Reitz, R., Sudano, L., Trudeau, S., & Tyndall, L. (2018). Competencies for family therapists working in healthcare settings AAMFT. http://blog.aamft.org/2018/02/competencies-for-family-therapists-working-in-healthcare-settings.html
American Cancer Society (2021). Cancer facts & figureshttps://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2021/cancer-facts-and-figures-2021.pdf
American College of Physicians (2010). Joint principles of the patient-centered medical home. https://www.acponline.org/system/files/documents/running_practice/delivery_and_payment_models/pcmh/understanding/educ-joint-principles.pdf
Back, A., Arnold, R., Baile, W., Tulsky, J., & Fryer-Edwards, K. (2005). Approaching difficult communication tasks in oncology. Cancer Journal for Clinicians, 55, 164–177. https://doi.org/10.3322/canjclin.55.2.164
Banerjee, S., Manna, R., Coyle, N., Shen, M., Pehrson, C., Zaider, T., Hammonds, S., Krueger, C., Parker, P., & Bylund, C. (2015). Oncology nurses’ communication challenges with patients and families: A qualitative study. Nurse Education in Practice, 16, 193–201. https://doi.org/10.1016/j.nepr.2015.07.007
Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., & Stein, A. (2000). Qualitative interview study of communication between parents and children about maternal breast cancer. Bmj, 321(7259), 479–482. https://doi.org/10.1136/bmj.321.7259.479
Bronfenbrenner, U. (1979). The ecology of human development: Experiments in nature and design. Harvard University Press.
Buchbinder, M., Longhofer, J., & McCue, K. (2009). Family routines and rituals when a parent has cancer. Family Systems & Health, 27, 213–227. https://doi.org/10.1037/a0017005
Cherny, N. (2011). Factors influencing the attitudes and behaviors of oncologists regarding the truthful disclosure of information to patients with advanced and incurable cancer. Psycho-Oncology, 30, 1269–1284. https://doi.org/10.1002/pon.1853
Colapinto, J. (1982). Structural family therapy. In Family counseling and therapy (3rd eds.) Peacock.
Compas, B. E., Worsham, N. L., Epping-Jordan, J. E., Grant, K. E., Mireault, G., Howell, D. C., & Malcarne, V. L. (1994). When Mom or Dad has cancer: Markers of psychological distress in cancer patients, spouses, and children. Health Psychology, 13, 507–515. https://doi.org/10.1037/0278-6133.13.6.507
Crabtree, B., Chase, S., Wise, C., Schiff, G., Schmidt, L., Goyzueta, J., Malouin, R., Payne, S., Quinn, M., Nutting, P., Miller, W., & Jaen, C. (2011). Evaluation of patient centered medical home practice transformation initiatives. Medical Care, 49, 10–16. https://doi.org/10.1097/MLR.0b013e3181f80766
Cuff, P., Vanselow, N., & Institute of Medicine. (2004). Improving medical education: Enhancing the behavioral and social science content of medical school curricula. National Academic Press.
Diareme, S., Tsiantis, J., Romer, G., Tsaalamanios, E., Anasontzi, S., Paliokosta, E., & Kolaaitis, G. (2007). Menta health support for children of parents with somatic illness: A review of the theory and interventions concepts. Families Systems & Health, 25, 98–118. https://doi.org/10.1037/1091-7527.25.1.98
Drost, E. (2011). Validity and reliability in social science research. Education Research Perspectives, 38, 105–123. https://doi.org/10.4236/ojbm.2014.23030
Epstein, R., Duberstein, P., Fenton, J., Fiscella, K., Horeger, M., Tancredi, D., Xing, G., Gramling, R., Mohile, S., Franks, P., Kaeberg, P., Plumb, S., Cipri, C., Street, R., Shields, C., Back, A., Butow, P., Walczak, A., Tattersall, M., & Kravitz, R. (2017). Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer. Journal of the American Medical Association (JAMA), 3, 92–100. https://doi.org/10.1001/jamaoncol.2016.4373
Feldman, M., & Feldman, S. (2013). The primary care behavioralist: A new approach to medical/behavioral integration. Journal of General Internal Medicine, 28, 331–332. https://doi.org/10.1007/s11606-012-2330-z
Glad-Timmons, J., & Potter, T. (2016). Communication with parents and families as a global determinant of health: Lessons from care of children with special health care needs. Creative Nursing, 22, 276–282. https://doi.org/10.1891/1078-4535.22.4.276
Granek, L., Nakash, O., Ariad, S., Shapira, S., & Ben-David, M. (2019). Mental health distress: Oncology nurses’ strategies and barriers in identifying distress in patients with cancer. Clinical Journal of Oncology Nursing, 23, 43–51. https://doi.org/10.1188/19.CJON.43-51
Halseth, S., & Ulfsaet, N. (2003). Having a parent with cancer: Coping and quality of life of children during serious illness in the family. Cancer Nursing, 26, 255–263. https://doi.org/10.1097/00002820-200310000-00003
Hodgson, J., Lamson, A., Mendenhall, T., & Crane, D. R. (2014). In (Eds.), Medical family therapy: Advanced applications. Springer International Publishing/Springer Nature. https://doi.org/10.1007/978-3-319-03482-9
Huizinga, G. A., Visser, A., Van der Graaf, W. T., Hoekstra, H. J., Stewart, R. E., & Hoekstra-Weebers, J. E. (2011). Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. Psycho-Oncology, 20, 730–737. https://doi.org/10.1002/pon.1779
Jackson, G., Powers, B., Chatterjee, R., Betteger, J., Kemper, A., Hasselblad, V., Dolor, R., Irvine, J., Heidenfelder, B., Kendrick, A., Gray, R., & Williams, J. (2013). The patient-centered medical home: A systematic review. Annals of Internal Medicine, 158, 169–178. https://doi.org/10.7326/0003-4819-158-3-201302050-00579
Kazlauskaite, V., & Fife, S. (2021). Adolescent experience with parental cancer and involvement with medical professionals: A heuristic phenomenological inquiry. Journal of Adolescent Research, 36, 1–28. https://doi.org/10.1177/0743558420985446
Kellerman, R., & Kirk, L. (2007). Principles of the patient-centered medical home. American Family Physician, 76, 774–775. https://www.aafp.org/afp/2007/0915/p774.html?printable=afp
Kelly, K., & Ganong, L. (2011). Shifting family boundaries. After the diagnosis of childhood cancer in stepfamilies. Journal of Family Nursing, 17, 105–132. https://doi.org/10.1177/1074840710397365
Kim, H., & Salyers, M. (2008). Attitudes and perceived behaviors to working with families of persons with severe mental illness: Mental health professionals’ perspectives. Community Mental Health Journal, 44, 337–345. https://doi.org/10.1007/s1007/s10597-008-9135-x
Levinson, W., Lesser, C., & Epstein, R. (2010). Developing physician communication skills for patient-centered care. Health Affiliation, 29, 1310–1318. https://doi.org/10.1377/hlthaff.2009.0450
Levinson, W., & Pizzo, P. (2011). Patient-physician communication: It’s about time. Journal of the American Medical Association, 305, 1802–1803. https://doi.org/10.1001/jama.2011.556
Lewis, F. (2011). Therapy for parental cancer and dependent children. In M. Watson, & D. Kissane (Eds.), Handbook of psychotherapy in cancer care (pp. 225–234). John Wiley & Sons.
McCaughan, E., Semple, C., & Hanna, H. (2021). Don’t forget the children’: A qualitative study when a parent is at end of life from cancer. Supportive Care in Cancer, 29, 7695–7702. https://doi.org/10.1007/s00520-021-06341-3
McDaniel, S., Doherty, W., & Hepworth, J. (2014). Medical family therapy and integrated care (2nd edition.). American Psychological Association.
McNeish, D. (2017). Missing data methods for arbitrary missingness with small samples. Journal of Applied Statistics, 44, 24–39. https://doi.org/10.1080/02664763.2016.1158246
Mehta, A., Cohen, R., & Chan, L. (2009). Palliative care: A need for family systems approach. Palliative and Supportive Care, 7, 235–243. https://doi.org/10.1017/s1478951509000303
Mendenhall, T., & Alshareef, A. (2021). Engaging families in health care: Everybody wins. Minnesota Physician, 35, 1–2. https://www.mnphy.com/0421_S4_TAI_MENDENHALL_AND_AALAA_ALSHAREEF
Mendenhall, T., Hodgson, J., Lamson, A., & Baird, M. (2018). Clinical methods in medical family therapy. Springer.
Milberg, A., Wahlberg, R., & Krevers, B. (2014). Patients’ sense of support within the family in the palliative care context: What are the influencing factors? Psycho-Oncology, 23, 1340–1349. https://doi.org/10.1002/pon.3564
Minuchin, S. (1974). Families and family therapy. Harvard University Press.
Morris, J. N., Martini, A., & Preen, D. (2016). The well-being of children impacted by a parent with cancer: An integrative review. Supportive care in cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 24(7), 3235–3251. https://doi.org/10.1007/s00520-016-3214-2
Muriel, A., Hwang, V., Kornblith, A., Greer, J., Greenber, D., Temel, J., Schapira, L., & Pirl, W. (2009). Management of psychological distress by oncologists. Psychiatric Services, 60, 1132–1134. https://doi.org/10.1176/ps.2009.60.8.1132
Passik, S., Kirsh, K., Theobald, D., Donaghy, K., Holtsclaw, E., Edgerrton, S., & Dugan, K. (2002). Use of depression screening tool and a fluoxetine-based algorithm to improve recognition and treatment of depression in cancer patients: A demonstration project. Journal of Pain and Symptom Management, 24, 318–327. https://doi.org/10.1016/S0885-3924(02)00493-1
Phillips, F. (2015). The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry. Palliative & Supportive Care, 13(4), 1057–1069. https://doi.org/10.1017/S1478951514001023
Romer, G., Saha, R., Haagen, M., Pott, M., Baldus, C., & Bergelt, C. (2007). Lessons learned in the implementation of an innovative consultation and liaison service for children of cancer patients in various hospital settings. Psycho-Oncology, 16, 138–148. https://doi.org/10.1002/pon.1105
Saag, H., Chen, J., Denson, J., Jones, S., Horwirtz, L., & Cocks, P. (2018). Warm handoffs: A novel strategy to improve end-of-rotation care transitions. Journal of General Internal Medicine, 33, 116–119. https://doi.org/10.1007/s11606-07104145-4
Sacchi, S., Lotti, M., & Branduarti, P. (2021). Education for a biobased economy: Integrating life and social sciences in flexible short courses from different backgrounds. New Biotechnology, 60, 72–75. https://doi.org/10.1016/j.nbt.2020.10.002
Siegel, R. L., Miller, K. D., & Jemal, A. (2020). Cancer statistics, 2020. A Cancer Journal for Clinicians, 70, 7–30. https://doi.org/10.3322/caac.21590
Street, R., & Haes, C. (2013). Designing a curriculum for communication skills training from a theory and evidence-based perspective. Patient Education & Counseling, 93, 27–33. https://doi.org/10.1016/j.pec.2013.06.012
Suojanen, K., Woodall, K., Hammonds, J., Monie, D., Scribani, M., Krupa, N., Jenkins, P., Weil, H., & Frye, J. (2018). Teaching future doctors to communicate: A communication intervention for medical students in their clinical year. Journal of Communication in Healthcare, 11, 263–277. https://doi.org/10.1080/17538068.2018.1507082
Swietek, K. E., Gaynes, B. N., Jackson, G. L., Weinberger, M., & Domino, M. E. (2020). Effect of the patient-centered Medical Home on racial disparities in quality of care. Journal of General Internal Medicine, 35, 2304–2313. https://doi.org/10.1007/s11606-020-05729-x
Syse, A., Aas, G., & Loge, J. (2012). Children and young adults with parents with cancer: A population-based study. Clinical Epidemiology, 4, 41–52. https://doi.org/10.2147/clep.s28984
Taylor, R., & Minkovitz, C. (2021). Warm handoffs for improving client receipt of services: A systematic review. Maternal & Child Health Journal, 25, 528–541. https://doi.org/10.1007/s.10995-020-03057-4
Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., & Hausmann, S. (2007a). Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care, 5, 135–145. https://doi.org/10.1017/S1478951507070204
Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., & Hausmann, S. (2007b). Oncology nurses’ perceptions of their supportive care for parents with advanced cancer: Challenges and educational needs. Psycho-Oncology, 16, 149–157. https://doi.org/10.1002/pon.1106
Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., & Hausmann, S. (2008). Enhancing the supportive care of parents with advanced cancer: Development of a self-directed educational manual. European Journal of Cancer, 44, 1625–1631. https://doi.org/10.1016/j.ejca.2008.02.045
Yi, J. (2009). Cultural influences on the survivorship of families affected by childhood cancer: A case for using family systems theories. Family Systems & Health, 27, 228–236. https://doi.org/10.1037/a0017150
Zaider, T., Smita, B., Manna, R., Coyle, N., Pehrson, C., Hammonds, S., Krueg, C., & Bylund, C. (2016). Responding to challenging interactions with families: A training module for inpatient oncology nurses. Family Systems & Health, 34, 204–212. https://doi.org/10.1037/fsh0000159
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All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Vaida Kazlauskaite and Tai Mendenhall. The first draft of the manuscript was written by Vaida Kazlauskaite and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Kazlauskaite, V., Mendenhall, T. Providers working with parents who are diagnosed with cancer: education and role perceptions regarding communication efforts between parents and children. Curr Psychol 43, 10762–10775 (2024). https://doi.org/10.1007/s12144-023-05208-6
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DOI: https://doi.org/10.1007/s12144-023-05208-6