Lakhani NS, Weir J, Allford A, Kai J, Barwell JG. Could triaging family history of cancer during palliative care enable earlier genetic counseling intervention? J Palliat Med. 2013;16:13505.

Article Google Scholar

Cohen PA, Nichols CB, Schofield L, Van Der Werf S, Pachter N. Impact of clinical genetics attendance at a gynecologic oncology tumor board on referrals for genetic counseling and BRCA mutation testing. Int J Gynecologic Cancer. 2016;26:8927.

Article Google Scholar

Forbes Shepherd R, Werner-Lin A, Keogh LA, Delatycki MB, Forrest LE. I need to know if Im going to die young: Adolescent and young adult experiences of genetic testing for Li-Fraumeni syndrome. J Psychosoc Oncol. 2021;39:5473.

Article Google Scholar

Kuchenbaecker KB, Hopper JL, Barnes DR, Phillips KA, Mooij TM, Roos-Blom MJ, et al. Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. JAMA . 2017;317:240216.

CAS Article Google Scholar

White S, Jacobs C, Phillips J. Mainstreaming genetics and genomics: a systematic review of the barriers and facilitators for nurses and physicians in secondary and tertiary care. Genet Med. 2020;22:114955.

Article Google Scholar

Human Genetics Society of Australasia. Code of Ethics for Genetic Counsellors 2022. Available from: http://www.hgsa.org.au/documents/item/9589.

Solimine J. Genetic testing after a terminal diagnosis-providing purpose. JAMA Oncol. 2019;5:9367.

Article Google Scholar

Rushton G, Rushton C, Francomano C, Kolodner K, Bernhardt BA. Genetics professionals experiences with grief and loss: implications for support and training. Clin Genet. 2010;77:4219.

Article Google Scholar

Hallowell N, Wright S, Stirling D, Gourley C, Young O, Porteous M. Moving into the mainstream: Healthcare professionals views of implementing treatment focussed genetic testing in breast cancer care. Fam Cancer. 2019;18:293301.

Article Google Scholar

Tutty E, Horsley P, Forbes Shepherd R, Forrest LE. The art and science of recruitment to a cancer rapid autopsy programme: a qualitative study exploring patient and clinician experiences. Palliat Med. 2020;35:43746.

Article Google Scholar

Dragojlovic N, Borle K, Kopac N, Ellis U, Birch P, Adam S, et al. The composition and capacity of the clinical genetics workforce in high-income countries: a scoping review. Genet Med. 2020;22:143749.

Article Google Scholar

Middleton A, Marks P, Bruce A, Protheroe-Davies LK, King C, Claber O, et al. The role of genetic counsellors in genomic healthcare in the United Kingdom: a statement by the Association of Genetic Nurses and Counsellors. Eur J Hum Genet. 2017;25:65961.

Article Google Scholar

Quillin JM, Emidio O, Ma B, Bailey L, Smith TJ, Kang IG, et al. High-Risk Palliative Care Patients Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking. J Genet Couns. 2018;27:83443.

Article Google Scholar

Abusamaan MS, Quillin JM, Owodunni O, Emidio O, Kang IG, Yu B, et al. The role of palliative medicine in assessing hereditary cancer risk. Am J Hosp Palliat Med. 2018;35:14907.

Article Google Scholar

White S, Phillips J, Turbitt E, Jacobs C. Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study. Supportive Care Cancer. 2022;30:161524.

Article Google Scholar

Cleophat JE, Pelletier S, Joly Y, Gagnon P, Dry A, Marin A, et al. Addressing cancer family history at the end of life: How frequent, relevant, and feasible is it? A survey of palliative care providers. Palliat Med. 2019;33:8568.

Article Google Scholar

Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ . 2021;374:n2061.

Article Google Scholar

Thorne SE. Interpretive description: Qualitative research for applied practice. 2nd ed. New York, NY: Routledge; 2016.

Creswell JW, Creswell JD. Research design: qualitative, quantitative, and mixed methods approaches. 5th ed. Thousand Oaks, California: SGE Publications; 2018.

World Health Organization. Innovative care for chronic conditions: Building blocks for action. Geneva, Switzerland: Noncommunicable Diseases and Mental Health, World Health Organization; 2002.

Zoom Video Communications. Zoom 2020 [cited 2020 19th November]. Available from: https://zoom.us/.

Liamputtong P. Focus group methodology and practical considerations. Focus Group Methodology; Principles and practice London: SAGE; 2011. p. 5070.

Krueger RA. Designing and conducting focus group interviews 2002 [cited 2021 14th January]. Available from: https://www.eiu.edu/ihec/Krueger-FocusGroupInterviews.pdf.

Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Res Sport Exerc Health. 2019;13:20116.

Article Google Scholar

QSR International. NVivo V12 2020. Available from: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home.

Braun V, Clarke V. Thematic Analysis. In: Lyons E, Coyle A, editors. Analysing qualitative data in psychology. 3rd ed. London, UK: SAGE Publishing; 2021. p. 12847.

Oliver P. The Idea of Research. 2010 2022/04/07. In: Understanding the Research Process [Internet]. London: SAGE Publications Ltd; [12-3]. Available from: https://methods.sagepub.com/book/understanding-the-research-process.

Mendes , Metcalfe A, Paneque M, Sousa L, Clarke AJ, Sequeiros J. Communication of Information about Genetic Risks: Putting Families at the Center. Fam Process. 2018;57:83646.

Article Google Scholar

Sturm AC, Knowles JW, Gidding SS, Ahmad ZS, Ahmed CD, Ballantyne CM, et al. Clinical Genetic Testing for Familial Hypercholesterolemia: JACC Scientific Expert Panel. J Am Coll Cardiol. 2018;72:66280.

Article Google Scholar

Kohler JN, Turbitt E, Lewis KL, Wilfond BS, Jamal L, Peay HL, et al. Defining personal utility in genomics: A Delphi study. Clin Genet. 2017;92:2907.

CAS Article Google Scholar

ACMG Board of Directors. Clinical utility of genetic and genomic services: a position statement of the American College of Medical Genetics and Genomics. Genet Med. 2015;17:5057.

Article Google Scholar

Gmez-Vrseda C, de Maeseneer Y, Gastmans C. Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics. 2019;20:76.

Article Google Scholar

Jamal L, Schupmann W, Berkman BE. An ethical framework for genetic counseling in the genomic era. J Genet Counseling. 2020;29:71827.

Article Google Scholar

Ryan J, Virani A, Austin JC. Ethical issues associated with genetic counseling in the context of adolescent psychiatry. Appl Transl Genomics. 2015;5:239.

Article Google Scholar

Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19:564.

Article Google Scholar

Ho A. Taking family-centered care seriously. Am J Bioeth. 2020;20:657.

CAS Article Google Scholar

Morrow A, Jacobs C, Best M, Greening S, Tucker K. Genetics in palliative oncology: a missing agenda? A review of the literature and future directions. Supportive Care Cancer. 2018;26:72130.

Article Google Scholar

Cho HL, Grady C, Tarzian A, Povar G, Mangal J, Danis M. Patient and Family Descriptions of Ethical Concerns. Am J Bioeth. 2020;20:5264.

Article Google Scholar

Lillie AK, Clifford C, Metcalfe A. Caring for families with a family history of cancer: why concerns about genetic predisposition are missing from the palliative agenda. Palliat Med. 2010;25:11724.

Article Google Scholar

Saulnier K, Cina M, Chan B, Pelletier S, Dorval M, Joly Y. Communication of genetic information in the palliative care context: Ethical and legal issues. Med Law Int. 2018;18:21940.

Article Google Scholar

Dickert NW, Eyal N, Goldkind SF, Grady C, Joffe S, Lo B, et al. Reframing consent for clinical research: a function-based approach. Am J Bioeth. 2017;17:311.

Article Google Scholar

Roeland EJ, Dullea AD, Hagmann CH, Madlensky L. Addressing hereditary cancer risk at the end of life. J Oncol Pr. 2017;13:e851e6.

Article Google Scholar

Cleophat JE, Marin A, Pelletier S, Joly Y, Gagnon P, Dry A, et al. What do cancer patients relatives think about addressing cancer family history and performing genetic testing in palliative care? Eur J Hum Genet. 2019:19.

Metcalfe A, Pumphrey R, Clifford C. Hospice nurses and genetics: implications for end-of-life care. J Clin Nurs. 2010;19:192207.

Article Google Scholar

Gonthier C, Pelletier S, Gagnon P, Marin A, Chiquette J, Gagnon B, et al. Issues related to family history of cancer at the end of life: a palliative care providers survey. Fam Cancer. 2018;17:3037.

Article Google Scholar

Quillin JM, Bodurtha JN, Siminoff LA, Smith TJ. Physicians current practices and opportunities for DNA banking of dying patients with cancer. J Oncol Pr. 2011;7:1837.

Article Google Scholar

Crellin E, McClaren B, Nisselle A, Best S, Gaff C, Metcalfe S. Preparing medical specialists to practice genomic medicine: education an essential part of a broader strategy. Front Genet. 2019;10:789.

Article Google Scholar

Regier DA, Weymann D, Buchanan J, Marshall DA, Wordsworth S. Valuation of health and nonhealth outcomes from next-generation sequencing: approaches, challenges, and solutions. Value Health. 2018;21:10437.

Article Google Scholar

Smith HS, McGuire AL, Wittenberg E, Lavelle TA. Family-level impact of genetic testing: integrating health economics and ethical, legal, and social implications. Personalized Med. 2021;18:20912.

Article Google Scholar

Nisselle A, Macciocca I, McKenzie F, Vuong H, Dunlop K, McClaren B, et al. Readiness of clinical genetic healthcare professionals to provide genomic medicine: an Australian census. J Genet Counseling. 2019;28:36777.

Article Google Scholar

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