References
- Stiefel F, Bourquin C. Communication in oncology: now we train – but how well? Ann Oncol. 2016;27:1660–1663.
- Kessler D. The needs of the dying: a guide for bringing hope, comfort, and love to life’s final chapter. New York (NY): Harper Collins; 2007.
- Byock I. Dying well: peace and possibilities at the end of life. New York (NY): Riverhead Books; 1997.
- Byock I. The meaning and value of death. J Palliat Med. 2002;5:279–288.
- Bauman Z. Mortality, immortality and other life strategies. Stanford (CA): Stanford University Press; 1992.
- Becker E. The denial of death. New York (NY): Free Press; 1973.
- Shield RR, Wetle T, Teno J, et al. Vigilant at the end of life: family advocacy in the nursing home. J Palliat Med. 2010;13:573–579.
- Stiefel F, Nakamura K, Terui T, et al. Collusions between patients and clinicians in end-of-life care: why clarity matters. J Pain Symptom Manage. 2017;53:776–782.
- MacCormick F, Exley C, Paes P, et al. End of life care on acute hospital wards: the importance of dialogue and decision making. BMJ Support Palliat Care. 2018;8:A2.3.
- Borgstrom E, Ellis J. Introduction: researching death, dying and bereavement. Mortality. 2017;22:93–104.
- Gott M, Seymour J, Ingleton C, et al. 'That's part of everybody's job': the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care . Palliat Med. 2012;26:232–241.
- White P, Cobb D, Vasilopoulos T, et al. End-of-life discussions: who’s doing the talking? J Crit Care. 2018;43:70–74.
- Wright AA, Keating NL, Ayanian JZ, et al. Family perspectives on aggressive cancer care near the end of life. JAMA. 2016;315:284–292.
- Aoun S, Deas K, Toye C, et al. Supporting family caregivers to identify their own needs in end-of-life care: qualitative findings from a stepped wedge cluster trial. Palliat Med. 2015;29:508–517.
- Barnes S, Gardiner C, Gott M, et al. Enhancing patient-professional communication about end-of-life issues in life-limiting conditions: a critical review of the literature. J Pain Symptom Manage. 2012;44:866–879.
- Small N, Gott M. The contemporary relevance of Glaser and Strauss. Mortality. 2012;17:355–377.
- Nielsen MK, Neergaard MA, Jensen AB, et al. Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clin Psychol Rev. 2016;44:75–93.
- Brogan P, Hasson F, McIlfatrick S. Shared decision-making at the end of life: a focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting. Palliat Med. 2018;32:123–132.
- Travers A, Taylor V. What are the barriers to initiating end-of-life conversations with patients in the last year of life? Int J Palliat Nurs. 2016;22:454–462.
- You JJ, Downar J, Fowler RA, et al.; Canadian Researchers at the End of Life Network. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med. 2015;175:549–556.
- Duke S. An exploration of anticipatory grief: the lived experience of people during their spouses' terminal illness and in bereavement. J Adv Nurs. 1998;28:829–839.
- Rando TA. Loss and anticipatory grief. Lexington (MA): Lexington Books; 1986.
- Rando TA, editor. Clinical dimensions of anticipatory mourning: theory and practice in working with the dying, their loved ones, and their caregivers. Champaign (IL): Research Press; 2000.
- Olson RE. Indefinite loss: the experiences of carers of a spouse with cancer. Eur J Cancer Care. 2014;23:53–561.
- Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665–1673.
- Robinson J, Gott M, Ingleton C. Patient and family experiences of palliative care in hospital: what do we know? An integrative review. Palliat Med. 2014;28:18–33.
- Terrill AL, Ellington L, John KK, et al. Positive emotion communication: fostering well-being at end of life. Patient Educ Couns. 2018;101:631–638.
- Colosimo K, Nissim R, Pos AE, et al. Double awareness” in psychotherapy for patients living with advanced cancer. J Psychother Integr. 2018;28:125–140.
- Ivzori-Erel A. The Beginning of rest of my life:” the role of sense of place and personal resources in meaning making and meaning made and their relationships with quality of life in cancer patient near the end of life [dissertation]. Haifa (Israel): University of Haifa; 2017.
- Zimmermann C. Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn. 2007;29:297–314.
- Zimmermann C. Acceptance of dying: a discourse analysis of palliative care literature. Soc Sci Med. 2012;75:217–224.
- Salander P. Cancer and “playing” with reality: clinical guidance with the help of the intermediate area and disavowal. Acta Oncol. 2012;51:541–560.
- Salander P. Communication training in oncology needs a theoretical framework. Ann Oncol. 2019;30:853.
- Featherstone M, Hepworth M, Turner BS, editors. The body: social process and cultural theory. London (UK): Sage; 1991.
- Miller BS. Dialogues with death: on a ‘counter phenomenenology’ among patients in a hospice setting [dissertation]. Ramat-Gan (Israel): Bar-Ilan University; 2017.
- Wade DT. Outcome measures for clinical rehabilitation trials: impairment, function, quality of life, or value? Am J Phys Med Rehabil. 2003;82:S26–S31.
- Dickson A, Allan D, O'carroll R. Biographical disruption and the experience of loss following a spinal cord injury: an interpretative phenomenological analysis. Psychol Health. 2008;23:407–425.
- Hammell KW. Quality of life after spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord. 2007;45:124–139.
- Ellis-Hill C, Payne S, Ward C. Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disabil Rehabil. 2008;30:150–159.
- Tan H, Digby R, Bloomer M, et al. End‐of‐life care in a rehabilitation centre for older people in Australia. Aust J Ageing. 2013;32:184–187.
- Lohne V. The battle between hoping and suffering: a conceptual model of hope within a context of spinal cord injury. ANS Adv Nurs Sci. 2008;31:237–248.
- Lohne V. Back to life again – patients’ experiences of hope three to four years after a spinal cord injury: a longitudinal study. Can J Neurosci Nurs. 2009;31:20–25.
- Lohne V, Severinsson E. Patients' experiences of hope and suffering during the first year following acute spinal cord injury. J Clin Nurs. 2005;14:285–293.
- Lohne V, Severinsson E. The power of hope: patients' experiences of hope a year after acute spinal cord injury. J Clin Nurs. 2006;15:315–323.
- Angel S, Buus N. The experience being a partner to a spinal cord injured person: a phenomenological-hermeneutic study. Int J Qualitative Stud Health Well-Being. 2011;6:7199.
- Stake RE. The art of case study research. Thousand Oaks (CA): Sage; 1995.
- Yin RK. Case study research: design and methods. 4th ed. Thousand Oaks (CA): Sage; 2009.
- Ellis C, Adams TE. The purposes, practices, and principles of autoethnographic research. In: Leavy P, editor. Oxford library of psychology. The Oxford handbook of qualitative research. New York (NY): Oxford University Press; 2014. p. 254–276.
- Ellis C, Adams TE, Bochner AP. Autoethnography: an overview. Forum Qual Soc Res. 2011;12:10.
- Greenhalgh S. Under the medical gaze: facts and fictions of chronic pain. Los Angeles (CA): University of California Press; 2001.
- Clarke V, Braun V, Hayfield N. Thematic analysis. In: Smith JA, editor, Qualitative psychology: a practical guide to research methods. 3rd ed. London (UK): Sage; 2015. p. 222–248.
- King N, Horrocks C. Interviews in qualitative research. London (UK): Sage; 2010.
- Morse JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res. 2015;25:1212–1222.
- Gilgun JF. Beyond description to interpretation and theory in qualitative social work research. Qual Soc Work. 2015;14:741–752.
- Tufford L, Newman P. Bracketing in qualitative research. Qual Soc Work. 2012;11:80–96.
- Forber-Pratt AJ. You’re going to do what?” Challenges of autoethnography in the academy. Qual Inq. 2015;21:821–835.
- Lincoln YS. Guba Eg Naturalistic inquiry. Newbury Park (CA): Sage; 1985.
- Rolland JS. Families, illness, and disability: an integrative treatment model. New York (NY): Basic Books; 1994.
- Soodalter JA, Siegle GJ, Klein-Fedyshin M, et al. Affective science and avoidant end-of-life communication: can the science of emotion help physicians talk with their patients about the end of life? Patient Educ Couns. 2018;101:960–967.
- Basch MF. The perception of reality and the disavowal of meaning. Annu Psychoanal. 1983;11:125–153. https://www.pep-web.org/document.php?id=aop.011.0125a
- Heidegger M. Being and time. Macquarrie J, Robinson E, translators. Oxford (UK): Blackwell; 1962.
- Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291:88–93.
- Aoun SM, Ewing G, Grande G, et al. The impact of supporting family caregivers before bereavement on outcomes after bereavement: adequacy of end-of-life support and achievement of preferred place of death. J Pain Symptom Manage. 2018;55:368–378.
- World Health Organization. WHO definition of palliative care. 2015. Available from: https://www.who.int/cancer/palliative/definition/en/
- Barnard R, Jones J, Cruice M. Communication between therapists and nurses working in inpatient interprofessional teams: systematic review and meta-ethnography. Disabil Rehabil. 2020;42:1339–1349.
- Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26:1753–1760.