BACKGROUND: Hope plays a pivotal role in enhancing the quality of life and coping strategies of individuals living with advanced diseases. The nature of the relationship between hope and prognostic awareness is unclear. AIM: To explore the experiences and meanings of hope and their association with prognostic awareness among people with advanced incurable diseases. DESIGN: Qualitative phenomenological study using reflexive thematic analysis of semi-structured interviews. SETTING/PARTICIPANTS: Interviews with 24 participants aged 30-99 years with advanced incurable disease were conducted in hospices and hospitals in the Czech Republic. RESULTS: We generated four distinct approaches to hope and prognostic awareness: Technical, Spiritual, Minimalist and Pragmatic. Each approach exhibited unique cognitive, emotional and behavioural dimensions of hope and prognostic awareness. The Technical and Minimalist approaches showed fluctuating hope influenced by medical updates, while the Spiritual and Pragmatic approaches demonstrated stable hope resilient to prognostic information. CONCLUSIONS: Recognizing these diverse hope approaches can guide tailored interventions in palliative care. Healthcare providers should adapt their communication strategies based on people's predominant hope orientations to support effective coping and enhance end-of-life care outcomes. This study sheds light on how different individuals navigate hope amidst terminal illnesses, providing insights into the nuanced psychological and emotional dynamics that influence their coping mechanisms.

Division of Medical Psychology 3rd Faculty of Medicine Charles University Prague Czech Republic

Zobrazit více v PubMed

Broadhurst K, Harrington A. A mixed method thematic review: the importance of hope to the dying patient. J Adv Nurs 2016; 72(1): 18–32. PubMed

Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000; 284(22): 2907–2911. PubMed

Salamanca-Balen N, Merluzzi TV, Chen M. The effectiveness of hope-fostering interventions in palliative care: a systematic review and meta-analysis. Palliat Med 2021; 35(4): 710–728. PubMed

Lin H, Bauer-Wu SM. Psycho-spiritual well-being in patients with advanced cancer: an integrative review of the literature. J Adv Nurs 2003; 44(1): 69–80. PubMed

Gum A, Snyder CR. Coping with terminal illness: the role of hopeful thinking. J Palliat Med 2002; 5(6): 883–894. PubMed

Chi GC. The role of hope in patients with cancer. Oncol Nurs Forum 2007;34(2): 415–24. PubMed

Benzein E, Norberg A, Saveman BI. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med 2001; 15(2): 117–126. PubMed

Nekolaichuk CL, Bruera E. On the nature of hope in palliative care. J Palliat Care 1998; 14(1): 36–42. PubMed

Kühne F, Hermann M, Preisler M, et al. Prognostic awareness in advanced disease: a review update and concept analysis. Front Psychol 2021; 12: 629050. PubMed PMC

Duggleby W, Lee H, Nekolaichuk C, et al. Systematic review of factors associated with hope in family carers of persons living with chronic illness. J Adv Nurs 2021; 77(8): 3343–3360. PubMed

Innes S, Payne S. Advanced cancer patients’ prognostic information preferences: a review. Palliat Med 2009; 23(1): 29–39. PubMed

Applebaum AJ, Kolva EA, Kulikowski JR, et al. Conceptualizing prognostic awareness in advanced cancer: a systematic review. Psychooncology 2013; 19(9): 1103–1119. PubMed PMC

Vlckova K, Tuckova A, Polakova K, et al. Factors associated with prognostic awareness in patients with cancer: a systematic review. Psychooncology 2020; 29(6): 990–1003. PubMed

Ng S, Ozdemir S. The associations between prognostic awareness and health-related quality of life among patients with advanced cancer: a systematic review. Palliat Med 2023; 37(6): 808–823. PubMed

Appelin G, Berterö C. Patients’ experiences of palliative care in the home: a phenomenological study of a Swedish sample. Cancer Nurs 2004; 27(1): 65–70. PubMed

Arai D, Sato T, Nakachi I, et al. Longitudinal assessment of prognostic understanding in patients with advanced lung cancer and its association with their psychological distress. Oncologist 2021; 26(12): e2265–e2273. PubMed PMC

Loučka M, Althouse AD, Arnold RM, et al. Hope and illness expectations: a cross-sectional study in patients with advanced cancer. Palliat Med 2024; 38(1): 131–139. PubMed PMC

Mathews J, Merchant S, Galica J, et al. Measuring prognostic awareness in patients with advanced cancer: a scoping review and interpretive synthesis of the impact of hope. JNCI J Natl Cancer Inst 2024; 116(4): 506–517. PubMed

Polacek LC, Saracino RM, Walsh LE, et al. How patients with advanced cancer conceptualize prognosis: a phenomenological qualitative inquiry. Palliat Med 2023; 37(7): 1006–1015. PubMed PMC

Seymour J, Clark D. Phenomenological approaches to palliative care research. Palliat Med 1998; 12(2): 127–131. PubMed

Ordille J. Phenomenology in end-of-life care: implications for philosophy and clinical practice. Clin Soc Work J 2016; 44: 170–178.

Neubauer BE, Witkop CT, Varpio L. How phenomenology can help us learn from the experiences of others. Perspect Med Educ 2019; 8: 90–97. PubMed PMC

Sundler AJ, Lindberg E, Nilsson C, et al. Qualitative thematic analysis based on descriptive phenomenology. Nurs Open 2019; 6(3): 733–739. PubMed PMC

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Heal 2019; 11(4): 589–597.

Braun V, Clarke V. Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: a review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG). Palliat Med 2024; 38(6): 608–616. PubMed PMC

Dufault K, Martocchio BC. Hope: its spheres and dimensions. Nurs Clin North Am 1985; 20(2): 379–391. PubMed

Chen H, Komaromy C, Valentine C. From hope to hope: the experience of older Chinese people with advanced cancer. Health (Irvine Calif) 2015; 19(2): 154–171. PubMed

Lohne V, Miaskowski C, Rustøen T. The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer. Cancer Nurs 2012; 35(2): 99–105. PubMed

Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res 2016; 26(13): 1753–1760. PubMed

Vlckova K, Polakova K, Tuckova A, et al. Views of patients with advanced disease and their relatives on participation in palliative care research. BMC Palliat Care 2021; 20(1): 1–7. PubMed PMC

Wohleber AM, McKitrick DS, Davis SE. Designing research with hospice and palliative care populations. Am J Hosp Palliat Med 2011; 29(5): 335–345. PubMed

Prigerson HG. Socialization to dying: social determinants of death acknowledgment and treatment among terminally ill geriatric patients. J Health Soc Behav 1992; 33(4): 378–395. PubMed

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(14): 1665–1673. PubMed PMC

Eliott JA, Olver IN. Hope, life, and death: a qualitative analysis of dying cancer patients’ talk about hope. Death Stud 2009; 33(7): 609–638. PubMed

Nierop-van Baalen C, Grypdonck M, van Hecke A, et al. Hope dies last . . . A qualitative study into the meaning of hope for people with cancer in the palliative phase. Eur J Cancer Care (Engl) 2016; 25(4): 570–579. PubMed

Olsman E, Leget C, Duggleby W, et al. A singing choir: understanding the dynamics of hope, hopelessness, and despair in palliative care patients. A longitudinal qualitative study. Palliat Support Care 2015; 13(6): 1643–1650. PubMed

Sachs E, Kolva E, Pessin H, et al. On sinking and swimming: the dialectic of hope, hopelessness, and acceptance in terminal cancer. Am J Hosp Palliat Med 2013; 30(2): 121–127. PubMed PMC