Australian Hospital-Based Parenting Support for Adults with Incurable End-Stage Cancer: Parent Perspectives

References

• Aamotsmo, T., & Bugge, K. (2014). Balance artistry—The healthy parent’s role in the family when the other parent is in the palliative phase of cancer: Challenges and coping in parenting young children. Palliative and Supportive Care, 12, 317–329. doi:10.1017/S1478951513000953
   Web of Science ®Google Scholar
• Arber, A., & Odelius, A. (2018). Experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children. Cancer Nursing, 41, 248–254. doi:10.1097/NCC.0000000000000491
   Web of Science ®Google Scholar
• Australian Institute of Health & Welfare. (2019). Cancer in Australia 2019. Retrieved from https://www.aihw.gov.au/getmedia/8c9fcf52-0055-41a0-96d9-f81b0feb98cf/aihw-can-123.pdf.aspx?inline=true
   Google Scholar
• Bell, K., & Ristovski-Slijepcevic, S. (2011). Metastatic cancer and mothering: Being a mother in the face of a contracted future. Medical Anthropology: Cross-Cultural Studies in Health and Illness, 30, 629–649. doi:10.1080/01459740.2011.588631
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. London, UK: SAGE Publications.
   Google Scholar
• Bray, E., Ferlay, J., Soerjomataram, I., Siegel, R., Torre, L., & Jemal, A. (2018). Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians, 68, 394–424. doi:10.3322/caac.21492
   PubMed Web of Science ®Google Scholar
• Bugge, K., Helseth, S., & Darbyshire, P. (2008). Children’s experiences of participation in a family support program when their parent has incurable cancer. Cancer Nursing, 31, 426–434. doi:10.1097/01.NCC.0000339250.83571.b0
   PubMed Web of Science ®Google Scholar
• Bugge, K., Helseth, S., & Darbyshire, P. (2009). Parents’ experiences of a family support program when a parent has incurable cancer. Journal of Clinical Nursing, 18, 3480–3488. doi:10.1111/j.1365-2702.2009.02871.x
   PubMed Web of Science ®Google Scholar
• Check, D., Park, E., Reeder-Hayes, K., Mayer, D., Deal, A., Yopp, J., … Hanson, L. (2017). Concerns underlying treatment preferences of advanced cancer patients with children. Psycho-Oncology, 26, 1491–1497. doi:10.1002/pon.4164
   Web of Science ®Google Scholar
• Creswell, J. (2014). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks, CA: SAGE Publications.
   Google Scholar
• Dencker, A., Rix, B., Bøge, P., & Tjørnhøj-Tømsen, T. (2017). A qualitative study of doctors’ and nurses’ barriers to communicating with seriously ill patients about their dependent children. Psycho-Oncology, 26, 2162–2167. doi:10.1002/pon.444
   Web of Science ®Google Scholar
• Ernst, J. C., Beierlein, V., Romer, G., Möller, B., Koch, U., & Bergelt, C. (2013). Use and need for psychosocial support in cancer patients: A population-based sample of patients with minor children. Cancer, 119, 2333–2341. doi:10.1002/cncr.28021
   Google Scholar
• Fearnley, R. (2010). Death of a parent and the children’s experience: Don’t ignore the elephant in the room. Journal of Interprofessional Care, 24, 450–459. doi:10.3109/13561820903274871
   PubMed Web of Science ®Google Scholar
• Fearnley, R., & Boland, J. (2017). Communication and support from health-care professionals, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review. Palliative Medicine, 31, 212–222. doi:10.1177/0269216316655736
   Web of Science ®Google Scholar
• Götze, H., Friedrich, M., Brähler, E., Romer, G., Mehnert, A., & Ernst, J. (2017). Psychological distress of cancer patients with children under 18 years and their partners: A longitudinal study of family relationships using dyadic data analysis. Supportive Care in Cancer, 25, 255–264. doi:10.1007/s00520-016-3411-z
   Web of Science ®Google Scholar
• Gunaratnam, Y., & Oliviere, D. (2009). Narrative and stories in healthcare: Illness, dying and bereavement. Oxford: Oxford University Press.
   Google Scholar
• Herzog, C., Handke, C., & Hitters, E. (2019). Analysing talk and text II: Thematic analysis. In H. Van den Bulck, M. Puppis, K. Donders, & L. Van Audenhove (Eds.), The palgrave handbook of methods for media policy research (pp. 385–401). Basingstoke, UK: Palgrave Macmillan.
   Google Scholar
• Inhestern, L., Haller, A., Wlodarczyk, O., & Bergelt, C. (2016). Psychosocial interventions for families with parental cancer and barriers and facilitators to implementation and use: A systematic review. PloS One, 6, 1–20. doi:10.1371/journal.pone.0156967
   Google Scholar
• Inoue, I., Higashi, T., Iwamoto, M., Heiney, S., Tamaki, T., Osawa, K., … Matoba, M. (2015). A national profile of the impact of parental cancer on their children in Japan. Cancer Epidemiology, 39(6), 838–841. doi:10.1016/j.canep.2015.10.005
   Web of Science ®Google Scholar
• Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington DC: National Academy Press.
   Google Scholar
• Institute of Medicine. (2008). Cancer care for the whole patient: Meeting psychosocial health needs. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK4015/
   Google Scholar
• Kvåle, K., & Bondevik, M. (2008). What is important for patient centred care? A qualitative study about the perceptions of patients with cancer. Scandinavian Journal of Caring Sciences, 22, 582–589. doi:10.1111/j.1471-6712.2007.00579.x
   PubMed Web of Science ®Google Scholar
• Lawson, K., & Lawson, D. (2018). Insights into the psychology of trauma should inform the practice of oncology. The Oncologist, 23, 750–751. doi:10.1634/theoncologist.2018-0091
   Web of Science ®Google Scholar
• Loscalzo, M., Clark, K., & Bultz, B. (2015). Integrated interdisciplinary staff leadership model of patient-centered care. In G. Christ, C. Messner, & L. Behar (Eds.), Handbook of oncology social work: Psychosocial care for people with cancer (1st ed., pp. 595–600). New York, United States: Oxford University Press Inc.
   Google Scholar
• Massachusetts General Hospital. (2019). Marjorie E. Korff PACT program: Parenting at a challenging time. Retrieved from https://www.mghpact.org/
   Google Scholar
• Morris, J., Martini, A., & Preen, D. (2016). The well-being of children impacted by a parent with cancer: An integrative review. Supportive Care in Cancer, 24, 3235–3251. doi:10.1007/s00520-016-3214-2
   PubMed Web of Science ®Google Scholar
• Muriel, A., Moore, C., Baer, L., Park, E., Kornblith, A., Pirl, W., … Rauch, P. (2012). Measuring psychosocial distress and parenting concerns among adults with cancer: The parenting concerns questionnaire. Cancer, 118(22), 5671–5678. doi:10.1002/cncr.27572
   PubMed Web of Science ®Google Scholar
• National Cancer Institute. (2019). Survival. Retrieved from https://www.progressreport.cancer.gov/after/survival
   Google Scholar
• Nilsson, M., Maciejewski, P., Zhang, B., Wright, A., Trice, E., Muriel, A., … Prigerson, H. (2009). Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer, 115, 399–409. doi:10.1002/cncr.24002
   PubMed Web of Science ®Google Scholar
• Palliative Care Australia. (2019). National palliative care standards 5th edition. Retrieved from https://www.palliativecare.org.au/standards
   Google Scholar
• Park, E., Check, D., Song, M., Reeder-Hayes, K., Hanson, L., Yopp, J., … Mayer, D. (2017). Parenting while living with advanced cancer: A qualitative study. Palliative Medicine, 31, 231–238. doi:10.1177/0269216316661686
   Web of Science ®Google Scholar
• Park, E., Deal, A., Check, D., Hanson, L., Reeder-Hayes, K., Mayer, D., … Rosenstein, D. (2016). Parenting concerns, quality of life, and psychological distress in patients with advanced cancer. Psycho-Oncology, 25, 942–948. doi:10.1002/pon.3935
   PubMed Web of Science ®Google Scholar
• Park, E., Deal, A., Yopp, J., Edwards, T., Stephenson, E., Hailey, C., … Rosenstein, D. (2017). End-of-life parental communication priorities among bereaved fathers due to cancer. Patient Education and Counseling, 100, 1019–1023. doi:10.1016/j.pec.2016.12.007
   Web of Science ®Google Scholar
• Park, E., Stephenson, E., Moore, C., Deal, A., & Muriel, A. (2019). Parental psychological distress and cancer stage: A comparison of adults with metastatic and non-metastatic cancer. Supportive Care in Cancer, 27, 2443–2451. doi:10.1007/s00520-018-4518-1
   Web of Science ®Google Scholar
• Peter MacCallum Cancer Centre & CanTeen. (2019). More support for our patients who are parents. Retrieved from https://www.petermac.org/news/more-support-our-patients-who-are-parents
   Google Scholar
• Phillips, F., & Lewis, F. (2015). The adolescent’s experience when a parent has advanced cancer: A qualitative inquiry. Palliative Medicine, 29, 851–858. doi:10.1177/0269216315578989
   PubMed Web of Science ®Google Scholar
• Rainville, F., Dumont, S., Simard, S., & Savard, M. (2012). Psychological distress among adolescents living with a parent with advanced cancer. Journal of Psychosocial Oncology, 30, 519–534. doi:10.1080/07347332.2012.703765
   PubMed Web of Science ®Google Scholar
• Semple, C., & McCance, T. (2010). Parents’ experience of cancer who have young children: A literature review. Cancer Nursing, 33, 110–118. doi:10.1097/NCC.0b013e3181c024bb
   PubMed Web of Science ®Google Scholar
• Steiner, V., Shlonsky, A., & Joubert, L. (2017). Psychosocial interventions for parents with incurable end-stage cancer: A rapid evidence assessment. Australian Psychologist: Special Issue, 52, 381–391. doi:10.1111/ap.12286
   Web of Science ®Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal of Qualitative Health Care, 19, 349–357. doi:10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., & Hausmann, S. (2007). Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care, 5, 135–145. doi:10.1017/S1478951507070204
   PubMedGoogle Scholar
• 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. doi:10.1016/j.ejca.2008.02.045
   PubMed Web of Science ®Google Scholar
• World Health Organization. (2015). Cancer fact sheet No.297. Retrieved from http://www.who.int/
   Google Scholar
• Zaider, T., Salley, C., Terry, R., & Davidovits, M. (2015). Parenting challenges in the setting of terminal illness: A family-focused perspective. Current Opinion in Supportive and Palliative Care, 9, 52–57. doi:10.1097/SPC.0000000000000114
   Web of Science ®Google Scholar