The table of the studies on hope in end-of-life care examined in the paper
| Authors | Methodology | Findings |
|---|---|---|
| Bally et al. (2014) (Canada) | Charmaz’s constructivist grounded theory (ChCGT) | Parental hope (PH) is described as an essential, powerful, deliberate, life-sustaining, dynamic, cyclical process rooted in time through the actions of accepting reality, establishing control, restructuring hope, and purposive positive thinking. The research reveals several aspects of PH such as the calming and strengthening function of hope, facing new challenges, avoiding the loss of hope, facing fear and despair |
| Bally et al. (2018) (Canada) | Review qualitative studies | Parents experience was described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. 3 key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward |
| Clayton et al. (2008) (Australia) | A systematic review | Findings suggest that balancing hope with honesty is an important skill for health professionals (HPs). Many patients seem to be able to maintain a sense of hope despite acknowledging the terminal nature of their illness. Patients and caregivers mostly preferred honest and accurate information, provided with empathy and understanding. HPs need to recognize this spectrum of hope and appreciate that patients may simultaneously hope for ‘cure’ while acknowledging the terminal nature of their illness. HPs may help patients to cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family |
| Daneault et al. (2016) (Canada) | ChCGT | The coding procedure revealed 7 categories of hope: (1) an irrational; (2) initial hope for miraculous healing; (3) as a phenomenon that changes over time; (4) hope for prolonged life when there is no further hope for cure; (5) hope for a good quality of life; (6) a lack of hope for some when treatments are no longer effective in curbing illness progression; (7) hope as enjoying the present moment and preparing for the end of life |
| Eliott and Olver (2009) (Australia) | Interviews according to the interview protocol, discursively analyzed responses | 3 type pf hope were identified: (1) essential to, and for, life; (2) hope, life, death, and others; (3) hopes changing during (or in) life |
| Granek et al. (2013) (Israel, Canada) | ChCGT | 2 categories of hope emerged: (1) future-oriented hope and (2) present-oriented hope. Additional subcategories were identified under each main categorysuch as: (1) hope for a cure and treatment success, hope for the child’s future, hope for a miracle, hope for more quality time with child. (2) Hope for day-to-day/moment-to-moment, hope for no pain and suffering, hope for no complications |
| Lou et al. (2015) (Republic of China) | Colaizzi’s descriptive phenomenology (CoDPh) and Husserl’s phenomenological approach in data analysis | 5 main topics were established: (1) losing hope for a cure; (2) encountering death; (3) establishing a protective role toward the child; (4) the intertwining chaos; (5) strengths of family life, contending with death. Within the issue (1) the authors indicated 3 subcategories: (a) confirmation of fear and desperation concerning recurrence of the illness; (b) the hope for an extended life; (c) the adjustment of expectations toward comfort care |
| Mok et al. (2010) (Hong Kong) | A qualitative study, the methodology was based both on Husserl’s and Heidegger’s approaches | 4 meanings of hope: (1) expected hopelessness/HCPs expected hopelessness or despair and were surprised if patients did not express such feelings/; (2) a dynamic process of hope; (3) hope-fostering strategies/the patients’ adaptation to EOL issues/; (4) peace as the ultimate hope |
| Mrig and Spencer (2018) (USA) | An anthropological investigation into the attitudes of oncologists and primary care doctors toward the decision to stop active treatment and begin palliative treatment, a qualitative research was conducted using data collected over interviews with doctors, which was then transcribed and reviewed by each author of the paper | The authors argue that hospice care is underutilized due to the ‘fighting or giving up’ attitude shown by doctors themselves and that the culturally conditioned metaphor of ‘war’ can be found to underly this approach. Cancer treatment is understood within this metaphor according to which the patient is supposed to play the role of soldier. The oncologist’s role is that of commander, planning how to win the battle. The doctors’ statements reveal the strong link between their hope and optimism in the sense of fighting, regardless of the price patients and their close ones might pay—not only in the case of failure, but also during aggressive treatment |
| Nafratilova et al. (2018) (Indonesia) | CoDPh | The parents’ religious attitudes, including their hope for a miraculous cure for their children and their need to surrender to God |
| Nierop-van Baalen et al. (2016) (Belgium, Ghent) | The study contains a secondary analysis of data obtained in a series of small studies on living with cancer with a short life expectancy (between 3 and 12 months) | The meaning of hope is related to the importance of the object it is attached to, rather than to a real chance of achieving this object. A dual function of hope: patients hope because they cannot forsake it and because they benefit so much from it. Patients use different strategies to increase their hope, described as the ‘the work of hope’. A better understanding of the work of hope can lead to better psychosocial support by HPs |
| Olsman et al. (2014) (The Netherlands) | The interpretative synthesis consisted of a quality assessment and thematic analysis of included articles | The majority of these 31 articles described perspectives of nurses or physicians. 3 perspectives on hope of palliative care patients were found: (1) realistic—hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth; (2) functional—hope as coping mechanism should help patients, and professionals focused on fostering hope, and (3) narrative—hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it |
| Rallison and Raffin-Bouchal (2013) (Canada) | The methodology of hermeneutic phenomenology | The main outcome of the study revealed 3 themes: (1) the parents’ experience of predictability and unpredictability; (2) the complex and continuous care provided in their homes; (3) the spiritual journey of the families |
| Reinke et al. (2010) (USA) | The classic version of grounded theory, audiotaping and transcribing semi-structured interviews with nurses caring for patients with advanced chronic obstructive pulmonary disease or cancer | 3 themes: (1) maintaining patient hope; (2) providing prognostic information; (3) coordinating the provision of prognostic information with physicians |
| Robinson (2012) (Canada) | Audio-recorded interviews, thematic analysis conducted using constant comparison | Hope is a significant theme in the advanced care planning (ACP). 3 themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP |
| Rempel et al. (2012) (Canada) | Glaser’s grounded theory and ChCGT | ‘Parenting under Pressure’ process consists of 4 phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; (4) encountering new challenges |
| Roscigno et al. (2012) (USA) | Semi-structured interviews, data came from a longitudinal multiple case study investigation | Parents relied on hope as an emotional motivator, whereas most HPs described parents’ notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers |
| Szabat (2020) (Poland) | Initial and focused coding using ChCGT and elements of CoDPh | The experience of PH consists 3 aspects: hope for the longest possible presence of a child with a family, hope for control over situations, pain, and symptoms, and existential facets of hope |
| Timmermann et al. (2015) (Denmark) | A phenomenological-hermeneutic study based on Paul Ricoeur’s hermeneutic | The findings reveal an influence of nature/weather on patients’ behavior. The analysis revealed 3 themes: (1) the experience of inner peace and an escape from negative thoughts; (2) the experience of a positive mood; (3) hope and the experience of good memories |
| Vachon et al. (2009) (Canada) | A conceptual analysis | 11 dimensions for the concept of EOL spirituality: (1) meaning and purpose in life; (2) self-transcendence; (3) transcendence with a higher being; (4) feelings of communion and mutuality; (5) beliefs and faith; (6) hope; (7) attitude toward death; (8) appreciation of life; (9) reflection upon fundamental values; (10) the developmental nature of spirituality; (11) its conscious aspect |