Abstract
The objectives of this study were (1) to provide an overview of review studies on hope in health care, and to describe (2) conceptualizations of hope, (3) antecedents and consequences of hope, and (4) ethical topics related to hope. Electronic databases were searched and 73 review studies were selected and thematically analyzed. Hope was conceptualized as (a) an expectation: appraisal of a future outcome, (b) resilience: endurance of adversity, and (c) a desire: expression of meaning. Opposite concepts to hope were fear/anxiety, hopelessness, despair, and depression. Inspiring relationships, particularly relationships with peers, were an important factor that increased hope in patients. Losses, like the loss of health or (inspiring) relationships, had a negative impact on hope. Also, hope had effects on motivation for change and making decisions. The ethics of hope was addressed in palliative care, where health care providers wanted to maintain patients’ hope while being honest or realistic. In conclusion, this chapter offers an overview of hope in health care and offers conceptual clarification, including ethical issues related to hope. Future studies should broaden the ethics of hope by including other values than realism and they should include the hope of health care providers.
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1 Introduction
Hope is of vital importance for societies because it is part of the vision of society. This vision may be an ecological one, or a vision of a just society, in which equality and respect for human rights will reign (Bloch 1968; Freire 1994; Moltmann 2005). At an individual level, writers have also emphasized the importance of hope, such as the crucial role of hope in enduring and surviving hardship (Frankl 2014). Christian writers have held hope in high esteem, as illustrated in Paul’s triad “faith, hope, and love,” whereas the ancient Greeks held mixed or negative views on hope (Eliott 2005, pp. 5–6; Nussbaum 1992, pp. 150, 461). Philosophers and other scholars have described some characteristics of hope: “(1) futurity—a future dimension of what is hoped for, (2) possibility—the outcome is possible but not certain (neither zero nor one), (3) desirability—what is hoped for is seen as good in some respect, and (4) agency—hoping agents engage in activities to reach their hope” (Olsman 2015, p. 8; see also, Averill et al. 1990, pp. 9–35; Martin 2014; Nunn 2005, pp. 63–77; Walker 2006, pp. 40–71).
Still, we should note that these characteristics cannot solve all conceptual problems. For example, some people with an incurable disease hope for a cure, and this calls into question the possibility of hope because the outcome of this hope will be zero. Other people hope that something bad will happen to a family member whom they hate, and this undermines the desirability of hope. Furthermore, hope may be conceptualized differently in various contexts, such as different health care contexts (Herrestad et al. 2014). An overview of the role of hope in these health care contexts, including conceptualizations of hope, has not been provided. The objectives of this study were (1) to provide an overview of review studies on hope in health care and to describe (2) conceptualizations of hope, (3) antecedents and consequences of hope, and (4) ethical topics related to hope. The findings will also aid reflection on the role of spirituality in health care, since hope is a central topic in spiritual care (Capps 2001; Gijsberts et al. 2019; Lester 1995; Olsman 2020).
2 Methods
A synthesis of review studies on hope in health care was conducted. Electronic databases were searched by a clinical librarian on March 21, 2019: PubMed (medicine), Embase (medicine), Emcare (nursing), and PsychINFO (psychology/psychiatry). The following search terms, and derivatives thereof, were used: (hope OR hopefulness) AND (review OR synthesis OR meta-analysis). Review studies were included when the Abstract explicitly mentioned hope as one of the findings, and when they described hope within the context of health care. The following were excluded:
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studies on hopelessness, or
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studies on hope in health (not on health care or illness), or
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studies that were publications other than journal papers, or
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studies with a title and abstract written in a language other than Dutch, English, German, French, or Spanish, or
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studies that had searched only one database, or
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studies that were not review, meta-synthesis or meta-analysis study
The search led to 101 references in PubMed, 219 in Embase, 161 in Emcare, and 57 in PsycINFO. In total, 538 references were found, of which 144 were duplicates. The titles and abstracts of the 394 remaining references were screened first. Of the 394 references, 166 were excluded because they did not describe hope in health care, and 108 studies described the topic under investigation but were excluded because they were not review studies. The remaining 120 studies were then screened on full-text. Of these studies, 21 had not systematically searched in two or more databases, 11 were untraceable, whereas eight references were not conducted within the context of health care. Four references did not describe, or barely described, hope in health care, one was not written in one of the chosen languages, one was not a journal paper, and one was a study protocol and not the review study itself. Hence, based on the screening of the full-texts (n = 120), 47 references were excluded.
This meant that 73 references were included in this study. The characteristics of the studies selected, such as objective and their health care context, were described. The research objectives of our study were used to analyze the findings of these studies thematically, utilizing Microsoft Excel. A column was created for each objective: to describe conceptualizations of hope, antecedents and consequences of hope, and ethical topics related to hope. Then, each column was analyzed, looking for similarities and differences between the various review studies.
3 Results
3.1 Included Studies
Seventy-three review studies were selected, published between 1997 and 2019, and are listed in Appendix Table 11.1, at the end of this chapter. For the sake of brevity, only author, year of publication, and objective of the review study are presented in this Appendix. The health care contexts of these studies were: mental health care (n = 16), oncology (n = 12), neurology (n = 10), palliative care (n = 9), pediatrics (n = 7), geriatrics/elderly care (n = 4), chronic health care (n = 3), other (n = 12).
3.2 Conceptualizations
Hope was found to be a multidimensional construct that might change over time (Duggleby et al. 2010; Kylmä and Vehviläinen-Julkunen 1997; Wayland et al. 2016). A frequently mentioned distinction was the difference between the doing and being of hope. The doing referred to the action or process of hoping for something in the future. The (relational) being of hope was a state of living with hope (Bright et al. 2011; Kylmä et al. 2009; Lohne 2001). I found three conceptualizations, in which these dimensions become tangible.
Hope was (1) an expectation, that was a positive, yet realistic, appraisal of an uncertain future outcome, like the hope of chronic heart failure patients that their condition would not worsen, or hope for transplants in children and adolescents with cystic fibrosis (Caboral et al. 2012; Connell et al. 2012; Duggleby et al. 2010, 2012; Jamieson et al. 2014; Leamy et al. 2011; Olsman et al. 2014; Schrank et al. 2008; Tutton et al. 2009; Wiles et al. 2008).
Hope as (2) resilience meant that hope was the strength or a (coping) strategy to endure adversity, for example in the family members who hope for the return of a missing person or when this was no longer possible, for the return to life as it was before the loss (Chi 2007; Clarke et al. 2016; Ebenau et al. 2017; Griggs and Walker 2016; Kharrat et al. 2018; Olsman et al. 2014; Oyesanya and Ward 2016; Parslow et al. 2017; Prip et al. 2018; Schiavon et al. 2017; Similuk et al. 2016; Stewart and Yuen 2011; Tong et al. 2015; Wayland et al. 2016; Weaver et al. 2016). Within the context of mental illness, hope was a positive factor associated with recovery, empowerment, and stigma (resistance) (Deering and Williams 2018; Firmin et al. 2016; Kylmä et al. 2006; Leamy et al. 2011; Livingston and Boyd 2010; Shepherd et al. 2016; van Eck et al. 2018; van Weeghel et al. 2019; Wilson et al. 2018).
Hope as (3) a desire was the expression of something meaningful embedded in (everyday) life, like the desire for recovery or the hope for a life worth living in patients with a neurological disease (Jones et al. 2016; Olsman et al. 2014; Soundy and Condon 2015; Soundy et al. 2014b). Hope was also described as a life value and (significant) associations with quality of life and/or well-being were found (Ebenau et al. 2017; Machado et al. 2017; van Leeuwen et al. 2011; van Mierlo et al. 2014; Singh and Hodgson 2011).
Hope was conceptualized as, or found to be, the opposite of fear/anxiety (Creighton et al. 2017; Germeni and Schulz 2014), hopelessness (Laugesen et al. 2016; Mahendran et al. 2016), despair (Clarke et al. 2016; Kylmä and Vehviläinen-Julkunen 1997; Refsgaard and Frederiksen 2013), and depression (Davidson et al. 2007; Olver 2012). In sum, hope was depicted as a multidimensional construct, conceptualized as expectation, resilience, and desire. Fear/anxiety, hopelessness, despair, and depression were its opposites.
3.3 Antecedents
Many studies described the antecedents of hope. Several psycho-socio-spiritual interventions had a positive effect on hope. The evidence for these interventions has been provided in children exposed to traumatic events in humanitarian settings in low-income countries (Purgato et al. 2018), and in oncology (Bauerreiß et al. 2018; Best et al. 2015; Olver 2012). In mental health care, several review studies suggested that recovery-focused interventions, especially those in which peer providers were involved, enhanced hope (Thomas et al. 2018; van Weeghel et al. 2019).
Hope-inspiring relationships, particularly with peers, were reported most frequently, as contributing to hope, for example, the hope of people who self-harm or people participating in rare disease support groups (Casellas-Grau et al. 2014; Deering and Williams 2018; Delisle et al. 2017; Koehn and Cutcliffe 2007; Li et al. 2018; Lloyd-Evans et al. 2014; Prip et al. 2018; Soundy et al. 2014a; Stenberg et al. 2016; Thomas et al. 2018). A study within the context of palliative care suggested that “affirmation of patient’s worth” may be one of the underlying factors that supports hope in patients (Kylmä et al. 2009). Other hope-engendering factors were hearing of positive stories (Kharrat et al. 2018; Stenberg et al. 2016), the ability to review one’s own expectations (Laugesen et al. 2016; Refsgaard and Frederiksen 2013), positive character traits (Broadhurst and Harrington 2016), and the use of spirituality in daily life (Agli et al. 2015; Baldacchino and Draper 2001).
Negative effects on hope were less frequently reported. The most frequently mentioned negative antecedents of hope were losses, such as the past losses of people with mental health problems, which affected their hope for the future, suggesting reduced opportunities for recovery (Connell et al. 2012). Hope was negatively affected in neurological patients who could no longer perform certain roles and/or who experienced a loss of control (Soundy et al. 2014a, b; Soundy and Condon 2015). An integrative review found that concurrent losses, such as the loss of health or income, or losing the professional interest of others, and a lack of symptom control all threatened the hope of patients with a life-threatening disease, as well as affecting their significant others (Kylmä et al. 2009). In sum, several psycho-socio-spiritual interventions and inspiring relationships, particularly peer support, engendered patients’ hope, whereas losses had a negative impact on hope.
3.4 Consequences
The effects of hope bore a relationship to hope as resilience, since hope helps adversity to be endured, as described above. Nevertheless, the effects of hope cannot be reduced to hope as resilience. In (forensic) mental health care patients, hope was the motivation to change. This meant that hope helped these patients to see a new way of being and generated the belief that one’s life is worth living. In that life, others who maintained hope were also important (Clarke et al. 2016). In the work of Leamy et al. (2011), hope was part of the contemplative phase of the transtheoretical model of change, after which—ideally—preparation, action, and maintenance and growth followed.
Hope affected the decisions of patients with cancer. For example, the hope for the future of patients with advanced cancer was an important drive in their decision to stop or continue anti-cancer therapy (Clarke et al. 2015). Hope for clinical benefit was the most commonly cited reason for clinical trial enrollment of young adults and adolescents with cancer (Forcina et al. 2018). This is in line with an earlier review study on the attitude toward research of patients with advanced cancer (Todd et al. 2009). In sum, hope was a motivation for change and it affected decisions on participation in research and on treatments. Hope in relation to treatments could also lead to ethical issues for health care providers, and this will be described below.
3.5 Ethics
The main ethical issue in relation to hope in health care was the tension between hope and truth/realism, which was addressed in palliative care. The moral background here is the duty of health care providers, especially physicians, to provide or maintain hope on the one hand, and to tell the truth, on the other. The tension between these two was intensified when patients avoided information about their poor prognosis or about the palliative rather than curative aims of a treatment (Barclay et al. 2011; Clarke et al. 2015; Clayton et al. 2008). Clinicians wanted to avoid “taking away hope” and did not want to alarm patients unnecessarily (Barclay et al. 2011; Clarke et al. 2015).
We found that the dilemma between hope and truth/realism is a dilemma between a realistic and functional perspective on hope. The former means that the basis of patients’ hope should be truthful, which requires clinicians to adjust hope to truth, whereas the functional perspective acknowledges the helpfulness of hope as patients’ way of coping with their disease, requiring clinicians to foster or maintain patients’ hope (Olsman et al. 2014). Still, a focus on (the helpfulness of) hope and maintaining hope may lead to overlooking patients’ other needs (Prip et al. 2018). In addition, clinicians may continue treatments, not only to maintain hope in their patients, but also because they have developed strong relationships with their patients (Clarke et al. 2015). A “solution” offered within the context of advanced cancer was to discuss prognosis and other issues honestly, providing it with understanding and empathy. In so doing, paradoxically, clinicians may foster hope (Clayton et al. 2008; van Gurp et al. 2013).
4 Discussion
The objective of this study was to describe hope in health care. As explained above, 73 review studies were included, covering a variety of health care contexts and the findings of these studies were thematically analyzed. This chapter suggests that hope is conceptualized as (1) an expectation: appraisal of a future outcome, (2) resilience: endurance of adversity, and (3) a desire: expression of meaning. Inspiring relationships, in particular relationships with peers, increase hope in patients. Losses, on the other hand, such as loss of health, relationships, or income, have a negative impact on hope. The findings also suggest that a central ethical issue is the tension between hope and truth in palliative care. Physicians want to be honest about poor prognosis and bad news, on one hand, while preventing harm and consequently not wanting to destroy patients’ hope, on the other.
The three conceptualizations of hope can be placed against the philosophical background of Enlightenment, Romanticism, and Utilitarianism/Radical Enlightenment (cf. Taylor 1992). The idea of hope as an expectation can be seen against the background of the Enlightenment, in which reason is used to appraise a future outcome as realistically as possible. Hope as desire can be seen in relation to Romanticism, emphasizing the subjective experiences, including the meaning of these experiences for the individual. Hope as resilience can be understood against a background of Utilitarianism because of its focus on the consequences of hope, that it helps to endure (and minimize the effects of) adversity. Recognition of these backgrounds is essential because it helps to see that individuals not only conceptualize themselves in various ways (Gergen 2000), but they will also conceptualize their own hope in different ways.
For example, when the clinician tries to adjust hope to realism and the patient wants his desire to get better acknowledged, this may lead to conflict between them that harms their relationship. My suggestion for clinicians is to recognize the value of each conceptualization and address them as options. That would mean acknowledging a palliative care patient’s unrealistic hope as a meaningful desire (“What does this hope mean to you?”), after which the clinician may ask, “Would you mind talking to me just once, about how you would feel if what you hope for were not to happen?” (Olsman 2015, pp. 115–120). Such a question also acknowledges the contradiction within patients who desire something unrealistic, while at the same time being aware that it may not come true (Olsman et al. 2015a; Robinson 2012; Sachs et al. 2013). Moreover, when the ethics of hope is limited to a binary contrast between the values of hope and realism/truth, health care providers tend to place themselves on the side of realism, while several studies suggest that health care providers may hold hopes that are unrealistic (Barclay et al. 2011; Buiting et al. 2011; Christakis and Lamont 2000; Clarke et al. 2015).
Therefore, I propose a relational approach to hope, which recognizes that hope plays a role for each individual and in relationships between individuals (Olsman 2015, pp. 115–120). I argue, in addition, that health care providers should build their relationship with patients by focusing on solicitude. Solicitude includes compassion (recognizing the patient’s suffering) and empowerment (recognizing the patient’s strengths) (Eliott 2013; Olsman et al. 2015b). Such an approach is furthermore important because relationships have the potential to foster hope. The importance of relationships in connection with hope has also been described in spiritual care (Capps 2001). The selected studies, in addition, suggest that peer support, in particular, can have a positive effect on hope, and this draws our attention to forms of peer support, something that deserves future research. One study, for example, suggested that besides its potential risks, peer support through online media has potential benefits, such as empowerment, an increase in hope, and resistance to stigma (Naslund et al. 2016).
The strength of this chapter is that, to the best of my knowledge, it provides a first overview of hope in various health care contexts, based on a systematic search in several databases. As well as providing this overview, it identifies gaps, offering possibilities for future studies. However, a limitation of this chapter is that the findings mainly apply to the so-called “Western” countries, requiring future studies to examine unexplored contexts. Another limitation is that only one author is responsible for the study, and as a consequence, it does not fit the criteria of a systematic review. Last but not least, an ongoing debate in hope research is how the objects of hope—in those cases where hope has an object—color (conceptualizations of) hope. It is, for example, worth exploring in future studies if objects of hope and conceptualizations of hope correspond.
In conclusion, the findings gained through this study have offered insight into hope in health care. This chapter has offered conceptual clarity on hope in health care and outlined the normative backgrounds and implications of these conceptualizations. In so doing, it offers several ways of addressing the (spiritual) topic of hope in clinical practice. I conclude that the ethics of hope needs to be developed in contexts other than palliative care and should be understood in terms wider than the dualism between hope and truth. A further conclusion is that future (synthesis) studies should examine the hope that is held by health care providers because their hope affects their care provision. My hope is that this chapter will support health care providers when they want to address the matter of hope during encounters with patients, patients’ family members, and their colleagues.
Notes
- 1.
The selected studies in this review study are marked with an asterisk.
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The author thanks Jan Schoones, clinical librarian of the Walaeus library (LUMC), for his contribution to the search used in this study.
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Olsman, E. (2020). Hope in Health Care: A Synthesis of Review Studies. In: van den Heuvel, S.C. (eds) Historical and Multidisciplinary Perspectives on Hope. Springer, Cham. https://doi.org/10.1007/978-3-030-46489-9_11
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