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Hope in severe disease: a review of the literature on the construct and the tools for assessing hope in the psycho-oncologic setting

Abstract

Aims and background

Research on the topic of hope began a long time ago but, more recently, interest in this construct has focused mainly on the development of psychometric tools for its assessment. The 2 steps of the present article are defining the construct of hope by completing a preliminary review of the literature and analyzing the tools used to assess hope in the setting of oncologic medicine, conducting a systematic review of the existing scientific literature.

Methods and study design

Our study was conducted in 2 stages. The first stage involved a nonsystematic preliminary review of the literature, the second a systematic search in all the medical journals contained in the Medline database as of 2012. The literature identified at the first stage was divided according to several topical categories, i.e., theoretical, empirical, and clinical works on the construct of hope. In the second systematic search, we identified the main psychometric tools used to measure hope in the field of clinical oncology and assessed their validity.

Results

A total of 22 articles were identified. What emerged when we pooled the findings of our 2 lines of research was that, despite its broad theoretical definitions, the construct of hope can be broken down to a few constituent elements when hope is studied using currently available psychometric tools. In particular, these identified constituent elements were coping, spiritual well-being, quality of life, distress, and depression.

Conclusions

The factors contained in the construct of hope include temporality, future, expectancy, motivation, and interconnectedness. The review of the scientific literature does not reveal a clear definition of hope. Multidisciplinary studies are needed to communicate different perspectives (medical, psychological, spiritual, theological) among each other for better definition of the constituent elements of hope in order to support the hope with specific interventions.

Tumori 2015; 101(5): 491 - 500

Article Type: ORIGINAL RESEARCH ARTICLE

DOI:10.5301/tj.5000349

Authors

Claudia Piccinelli, Carlo Alfredo Clerici, Laura Veneroni, Andrea Ferrari, Tullio Proserpio

Article History

Disclosures

Financial support: None.
Conflict of interest: None.

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Introduction

Patients with serious diseases often find themselves having to deal with dismal statistics and have subjective plans to remain hopeful (that may have little to do with the medical evidence). Physicians have a similar dilemma when they must tell patients that they have a poor prognosis, ­trying to strike the right balance between providing objective information and allowing patients to have hope. Reflecting on the meaning and the ways to support hope in oncology is clinically relevant. For patients, it is more difficult to cope with the disease and treatment when there is no hope. Disease raises serious questions about which hopes are realistic with respect to prognosis but also with respect to the deeper sense of existence (Who are we? Where are we going?) and about what provides support to this hope (1).

Research on the topic of hope has its roots in history. A significant example comes from the famous lecture given by the psychiatrist Karl Menninger at the annual meeting of the American Psychiatric Association in 1959, in which he acknowledged the need to give hope a place in the world of science and psychiatry (2). The concept of hope is not easy to measure. It is a subjective attitude that can be analyzed using methods borrowed from various disciplines. It is generally accepted, even only intuitively, that human beings need to have hope in order to live. Up until a few years ago, however, the literature focused more (and more successfully) on what happens when a person is without hope, instead of concentrating on hope per se, to such a degree that hope was defined as “the absence of despair” (3). More recently, there have been signs of a growing attention being paid more to discussing this construct in its own right, also by developing ad hoc questionnaires to assess it (4).

The aim of the present article was to examine the scientific literature on the topic of how hope is defined, assessed, and interpreted in the context of oncologic medicine, starting with the consideration that the methodologic aspects are fundamentally and crucially important. The phenomenology of the construct of hope depends largely on how hope is assessed in the working reference setting, and consequently on the psychometric qualities of the tools used to do so. That is why it is useful to ask ourselves which tools are available for measuring hope, how well they grasp the object of the construct, and how reliably they succeed in measuring hope in different individuals and at different times (their repeatability).

Materials and methods

For the purpose of defining the construct of hope, we completed a preliminary review of the literature, starting from the bibliographical references that we considered relevant to the topic, aiming to make our review as broad as possible in terms of the topics covered and the historical periods considered. The literature identified was grouped into several topical categories, i.e., theoretical works on the definition of the construct of hope, empirical works on the assessment of hope, and clinical works on action taken to promote and preserve hope from a multidisciplinary outlook.

Then, in a second step, to analyze the tools used to assess hope in the setting of oncologic medicine, we conducted a systematic review of the existing literature by querying all the medical journals in the Medline database as of December 2012, using the key words “hope and psychometrics” as a first search criterion, then refining our search with “psychology” as a qualifying criterion. We report only descriptively the instruments used in the various studies; for the psychometric properties of each instrument, please see the corresponding studies listed in the References.

Based on the abstracts of the 155 publications resulting from this second search, we then excluded any articles that we judged of no interest for the purposes of our study (the word hope is often used in a general sense, without referring to the construct of hope or its measurement). We then obtained the complete articles for the remaining 64 abstracts, from among which we further selected the articles explicitly referring to oncologic patients (the 22 articles briefly described in Tab. I).

Scales and tools emerging from the systematic literature with reference to cancer patients

Study Aim Scales/instruments Sample Findings
COH-QOL = City of Hope Quality of Life; GDS = Geriatric Depression Scale; HHI = Hope Herth Index; HHI-S = Swedish version of the Hope Herth Index; QOL = quality of life; QOL-CS = quality of life of cancer survivors.
Benzein & Berg, 2003 (36) To assess the reliability and validity of the Swedish version The HHI-S together with the Miller Hope Scale and Beck’s Hopelessness Scale 40 patients with cancer in palliative care and 45 family members “The instrument shows sound reliability and validity, it should be used with care in clinical palliative care settings.”
Berterö et al, 2008 (37) To describe patients’ life situation and quality of life Qualitative interviews 23 patients starting palliative treatment “Importance of improving the care of people afflicted with lung cancer, as well as promoting support for the next of kin.”
Buddeberg et al, 1988 (38) To examine patients with a newly developed questionnaire as to the coping behavior Zurich illness adaptation questionnaire 270 patients who had gynecological cancer, epilepsy, or diabetes mellitus “If the disease takes a favourable turn, the patient copes with it in a favourable manner.”
Cantrell & Conte, 2008 (39) To establish the feasibility of delivering the Hope Intervention Program Dialogue and interactions online; Web-based intervention 6 survivors of childhood cancer “Web-based psychosocial nursing interventions are feasible.”
Crawford & Robinson, 2008 (40) To examine the psychometric properties of short forms of the GDS GDS 84 patients receiving palliative care “Several short forms of the GDS may be appropriate for use in palliative care.”
Ferrell et al, 1995 (41) To determine the extent to which the QOL-CS instrument measured the concept of QOL in cancer survivors QOL-CS 686 members of National the Coalition for Cancer Survivorship “The QOL-CS and its subscales adequately measured QOL in population of cancer survivors.”
Cantrell & Conte, 2008 (39) To focus on the revision and psychometric testing of COH-QOL Ostomy Questionnaire The revised COH-QOL Ostomy Questionnaire 1513 California members of the United Ostomy Association “Evidence for the validity and reliability of the COH-QOL Ostomy Questionnaire.”
Herth, 1991 (4) To describe the development and psychometric evaluation of the Herth Hope Scale Herth Hope Scale and the Beck Hopelessness Scale 180 cancer patients, 185 well adults, 40 well elderly, and 75 elderly widow(er)s “This measure should enable exploration of hope in diverse adult populations.”
Higginson & Donaldson, 2004 (43) To determine the relationships between, and factorial structure of, 3 widely used scales among advanced cancer patients Three previously established scales: a generic measure, a palliative care specific measure, and a measure of hope (HHI) 171 advanced cancer patients “4 factors—self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. Identified three factors which are important outcomes and would be simple to measure in clinical practice and research.”
Hoogerwerf et al, 2012 (44) To assess illness perceptions A drawing of how patients perceived their diseased lungs look Patients with non-small-cell lung cancer “Insight into what patients believe and feel about their disease.”
Juvakka et al, 2009 (46) To describe hope from the perspective of an adolescent with cancer Using qualitative content analysis based on Ricouer’s hermeneutic philosophy 6 adolescents aged between 16 and 21 years “The hope of adolescents having cancer is two dimensional: intentional hope directed towards something and hope experienced as an inner resource. The hope of adolescents was enhanced by factors related to their experiences and social network.”
Kirchberger et al, 2004 (47) To obtain a validated and sensitive research instrument, the Life Quality Lectin-53 Questionnaire QOL; Life Quality Lectin-53 Questionnaire 112 adult patients with cancer “Significant improvement in QOL was found.”
Mehrotra & Sukumar, 2007 (48) To explore sources of strength in the process of caregiving from the perspectives of Indian women caring for relatives with cancer Narratives of the participants 20 Indian women caring for relatives with cancer “Religious beliefs and practices and positive appraisal of the caregiver role in terms of ‘value’ emerged as sources of strengths.”
Meyers et al, 2011 (49) To examine the effects of a problem-solving intervention on QOL QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; Social Problem Solving Inventory–Revised Patients with advanced cancer on clinical trials and their caregivers “Patient QOL showed no significant difference in the rate of change b etween the intervention and usual care arms.”
Mohler et al, 2008 (45) To describe the complex mixed methods to assess health-related quality of life outcomes Modified City of Hope Quality of Life Ostomy and Short Form-36v2 questionnaires Colorectal cancer survivors with ostomies “Psychometric properties of the quantitative measures used were quite acceptable.”
Nekolaichuk & Bruera, 2004 (50) To validate Hope Differential-Short, and evaluate its clinical utility for assessing hope in advanced cancer HDS Hope Differential-Short, HDS (9 items), HHI, Hope Visual Analog Scale, and Edmonton Symptom Assessment System 96 advanced cancer patients “Promising psychometric properties for HDS.”
Neuwöhner & Lindena, 2011 (51) To investigate how patient distress should be assessed Hospice and Palliative Care Evaluation Patients in German palliative care services “A large percentage of palliative care patients required professional psychosocial support.”
Phillips-Salimi et al, 2007 (52) To assess appropriateness of HHI in adolescents and young adults with cancer HHI Adolescents and young adults “HHIndex is a reliable measure of hope in adolescents and young adults with cancer.”
Ripamonti et al, 2012 (53) To validate the HHI questionnaire in Italian HHI; concurrent validity: Hospital Anxiety and Depression Scale, Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Edmonton Symptom Assessment Scale, and System Belief Inventory-15R 266 patients with nonadvanced cancer “The Italian version of HHI is a valid and reliable assessment tool.”
Sartore & Grossi, 2008 (54) To validate the Hope Herth Index (HHI) in Portuguese HHI 3 groups, of which 47 were oncology patients, 40 type 2 diabetes patients, and 44 caretakers of these patients “Suitable psychometric properties, available for use.”
Yip et al, 2012 (55) To analyze the literature related to QOL (best available evidence related to QOL instruments) QOL instruments Review (adult patients with cancer undergoing chemotherapy) “13 articles with validation of the QoL instruments; 4 QoL instruments were identified.”
Yong et al, 2008 (56) To develop a scale assessing the spiritual needs of Korean patients with cancer Qualitative interviews 257 cancer patients “5 subconstructs: love and connection, hope and peace, meaning and purpose, relationship with God, and acceptance of dying.”

Key points in the definition of hope

There is no single definition of hope.

Hope is an element potentially capable of reducing the individual’s contact with reality.

The definition of hope has often been compared with that of similar constructs, such as expectations.

Hope is a construct employed regarding the course of disease and in the application of various psychological and medical treatments to illness.

In Christian anthropology, hope is possible in a relational perspective.

Certain hoping dynamics have been discovered in relation to coping and adjusting.

A more complex theoretical framework in the study of hope is needed.

Results

The outcome of our preliminary literature review was a set of publications on the topic of hope, which could be classified as theoretical, empirical, or clinical works on the construct of hope.

Theoretical works on the definition of hope

These include studies conducted in various settings, mainly concerning the topics and areas of psychology.

The meaning of hope in illness has often attracted the scientific world’s attention (5), but this interest has been somewhat erratic. An article from the 1970s mentioned that hope had been largely ignored by mental health professionals or, at best, seen as an element potentially capable of reducing the individual’s contact with reality (6).

The topic of hope has been discussed in a variety of fields, primarily prompting bioethical considerations, particularly concerning physicians’ paternalistic attitude when it comes to communicating a patient’s diagnosis: “Convinced of hope’s therapeutic benefits, physicians routinely support patients’ false hopes, often with family collusion and vague, euphemistic diagnoses and prognoses, if not overt lies.” Bioethical experts are critical of such behavior because the see it as a paternalistic violation of a patient’s autonomy (7).

The definition of hope has often been compared with that of similar constructs, such as expectations, and several studies demonstrated that hope and expectations are distinct but connected concepts (8).

No research perspectives have been overlooked in this setting. A study conducted in the 1990s looked into the neurobiological correlates and cerebral location of hope with the aid of positron emission tomography with a view to seeking correlations between an analysis on the content of verbal reports of positive and negative hopes, and the cerebral sites involved (9).

Among the theoretical approaches that can be used, there is also the anthropologic perspective, i.e., taking an explicit view of what human beings are, and what they can become. This approach is broad enough to avoid arbitrarily excluding any of the principal disciplines (philosophy, psychology, and theology), while at the same time practical enough to make use of empirical data. The contribution from Rulla (10) formulates just such an anthropologic approach from a Christian perspective. The purpose of any anthropologic analysis is essentially heuristic: anyone writing about hope relies on an implicit anthropologic basis, sometimes arbitrarily excluding or giving priority to certain dimensions of the human being. The anthropologic formula developed by Rulla (10) seeks to explain the psychological dynamics of Christian hope as an interpersonal phenomenon, and this aspect of hope may serve to unify its various dimensions (11).

A recent literature review showed that numerous publications describe hope as a multidimensional construct. Although there is no consensus on which is the best model for representing the multidimensional structure of hope, the models used embrace the person as a whole and hope’s multidimensional structure is fairly well-defined. The same cannot be said of the dynamic process of hoping, which is poorly understood. Certain hoping dynamics have been discovered in relation to coping and adjusting, to changing levels of hope over time, to interactions between hope and despair, and to the process of transforming challenges into opportunities (as described in Tab. II). Understanding these dynamics seems to develop on multiple levels, longitudinally, influenced by internal and external factors. These issues demand the support of a more complex theoretical framework than those used so far (12).

Empirical works on the assessment of hope

There are empirical studies concerning different pathologic conditions and different stages of disease. The numerous studies conducted, particularly in the so-called terminal stage of life, in the palliative care setting, confirm the need to identify strategies capable of dealing with the onset of depressive symptoms, despair, and a desire to anticipate death. All this is particularly important when a disease is severe or in an advanced stage (13).

Other studies have emphasized how people who are ill need their dignity (defined as related to a variety of variables such as psychological distress, physical discomfort, and dependency issues), so as to be acknowledged and respected, and how the various operators involved may sustain or mortify this perceived need, depending on how they deal with the patient (14-15-16).

Some research has suggested that hope is a core aspect of life and, in certain situations, it can be essential to the success of the healing process in people who are ill, or in helping them prepare for death (17).

The matter of hope can be connected to that of a patient’s religiosity, a topic that has been studied in parallel with research on the oncologic patient’s quality of life (QOL). Patients who are optimistic and have a sense of connectedness are likely to cope better with cancer. Therefore, although some might object that religion cannot be causally correlated with an individual’s state of health, it seems to have a strongly associated role (18).

The matter of hope is also linked to ethical issues relating to the instrumental use of unfounded hope in people in desperate conditions. “How do we encourage patients to be hopeful without exploiting their hope? A medical researcher or a pharmaceutical company can take unfair advantage of someone’s hope by much subtler means than simply giving misinformation” (19).

Hope is acknowledged as being important in many treatment settings. The empirical literature demonstrates both the importance of hope for patients with terminal diseases and the fundamental psychosocial influence that hope seems to have on an advanced cancer patient’s well-being (20).

In one study that involved more than 7000 people, being optimistic or pessimistic significantly predicted survival over the course of a 40-year follow-up, with the optimists living longer. This study used the Optimism-Pessimism scale drawn from the Minnesota Multiphasic Personality Inventory (21).

The importance of optimism, which is related to hope, has emerged in various settings:

In transplantology: the key psychosocial resources during the period immediately after the transplant, which include optimism and the support of friends, influence the patient’s QOL a year after the transplant (22).

In cardiovascular diseases: there is evidence of a relationship between an optimistic disposition and all-cause mortality in old age (23).

People with head and neck cancer who are pessimistic are at higher risk than optimistic patients of being dead a year after its diagnosis. The results of a study on a group of French patients with cancer of the head and neck indicate that an optimistic disposition predicts survival at 1 year irrespective of other sociodemographic and clinical variables (24).

Optimism has been considered in relation to hope on its 2 components of agency and pathways (25).

The agency component is the motivational component of hope; the pathway is the route to attain the goal.

Optimism, which represents a stable tendency to believe that everything will be all right, focuses on the actions rather than the motivations, which bring the positive events (26). In this conceptualization, hope is the positivity regarding one’s own action and optimism is the positive expectation of the external environment. Hope and optimism negatively correlate with depression and anxiety (27).

In the case of patients with terminal disease, one study reported that psychosocial discomfort was apparently unassociated with survival, but further studies are needed to clarify the prognostic meaning of a “positive attitude,” hope, and optimism in advanced cancer patients (28).

Clinical studies on measures designed to promote and maintain hope in a multidisciplinary approach

Some studies have investigated how the hospital chaplain’s actions can affect a patient’s hope. In particular, one randomized controlled study measured the effect of the chaplain’s actions on patients undergoing coronary bypass surgery: a sample of 106 patients in the experimental arm received 5 visits from the hospital chaplain, while a control arm did not. The 2 groups were compared in terms of their scores for anxiety, depression, hope, religion, and coping styles, and a significant difference emerged between the two (29).

Like psychosocial and religious support, a physician’s actions can also significantly affect people’s hope, as demonstrated by a study on how a patient’s prognosis is communicated to parents in pediatric oncology departments (30): physicians are sometimes selective in providing prognostic information in order to sustain the patients’ and their families’ hopes. This study examined the relationship between how the physician explained the prognosis to parents and the possible outcomes, including hope, trust, and emotional stress. The main finding was that the parents tended to be more or less hopeful depending on how the oncologist spoke to them about their child’s disease.

Some studies claim that patients’ hopes can be sustained while still respecting their autonomy (31), and the Italian code of medical ethics emphasizes and reiterates this aspect in article 30, which establishes that information about a poor or dismal prognosis that might cause worry and suffering must be delivered with care, using nontraumatizing terms and including an element of hope.

Various works have suggested that physicians must balance their obligation to be honest with their equally important duty to nurture hope (32).

The topic of hope has recently been the object of major systematic reviews, which have investigated how hope can be sustained when communicating a prognosis of death for terminal patients and their families (33).

Some studies have emphasized the need for a therapeutic alliance capable of sustaining hope as an existential factor in the medical care-providing process (34, 35).

The results of our systematic review of the literature concern the tools used to assess hope. We identified 22 articles (4, 36-37-38-39-40-41-42-43-44-45-46-47-48-49-50-51-52-53-54-55-56), classifiable according to the type of individual forming the sample examined and the goals of the study.

The subjects most often considered in these studies were patients being actively treated (with chemotherapy or supportive treatments), chronic patients, those receiving palliative treatments, or those in the terminal stages of their disease (see classification I, below). In the studies that we examined, reference was made to the construct of hope for various purposes (see classification II, below). Tools for assessing this construct were often used for the purpose of concurrently validating tests or scales for assessing other aspects (see classification IIc, below), which ranged from coping, spiritual well-being, and QOL to distress and depression. Similarly, the tools used to estimate the concurrent validity of specific psychometric tests for measuring hope were scales for assessing depression and anxiety, despair, spiritual well-being, or tools for evaluating symptoms in various hospital, geriatric, and palliative care settings. Some studies also involved the use of tools for measuring uncertainty, the will to live, self-esteem, confidence, spirituality and transcendence, adjustment to the disease, and QOL (see classification IIe, below).

The method commonly used was based on quantitative psychometric tests, and the most often used in this setting was the Herth Hope Index (HHI), while qualitative methods were rarely applied (see classification IId, below). Psychometric tests were used both in studies on the preparation of new tests and in those on the validation of translations of tests already in use (see classifications IIa and IIb, below).

Classification based on the type of patient

Adolescent patients (46, 52)

Patients who have recently received a dismal diagnosis (37, 44)

Patients with advanced disease, receiving palliative and end-of-life care (36, 40, 43, 49-50-51)

Survivors (39, 41, 42, 45)

Chronic patients, those receiving active treatment, chemotherapy, and/or supportive treatments (4, 39, 47, 53-54-55-56)

Caregivers (49, 50)

Classification based on the goals of the study and the methods used

(a) Validation of a tool for measuring hope in a given language, or in a particular population (36, 52-53-54)

(b) Creation of a new tool or scale specifically for measuring hope: the Hope Differential–Short (HDS) (50), the HHI (4), and the Hope Intervention Program (39)

(c) Use of assessment tools or reference to hope for the purpose of validating another test/scale: Geriatric Depression Scale (GDS) (40), Korean scale of spiritual needs (56), Life Quality Lectin-53 Questionnaire (47), the relationship among scales (EQoL generic quality of life tool EuroQol), a specific measure of palliative care [POS], and HHI) (43), a coping questionnaire (37), a QOL questionnaire (55), cognitive-behavioral problem-solving educational intervention on the QOL (49), assessment of distress with physical and psychological symptoms (51), the modified City of Hope Quality of Life–Ostomy Questionnaires (45), the City of Hope Quality of Life (COH-QOL)–Ostomy Questionnaire (42), a specific measure of the QOL in cancer survivors of the City of Hope National Medical Centre (41)

(d) Methods used consisted of psychometric tests, usually the HHI. More rarely, qualitative investigations or interviews were used (37, 46, 50). Some specific qualitative methods used involved hermeneutic philosophy (46), drawings or graphic representations, or a brief questionnaire on patients’ perception of their disease (44).

(e) Concurrent validity of hope. Other tests used for concurrent validity measurement purposes were the Hospital Anxiety and Depression Scale (HADS); the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT-Sp); the Edmonton Symptom Assessment Scale (ESAS) (50); the System Belief Inventory (SBI-15R) (53); the HHI; the Hope Visual Analog Scale (H-VAS); the relationship among 3 scales: a generic measure of QOL, POS, and a measure of hope (HHI) (43); the GDS; the original 30-item form of the GDS; the single item relating to depression from the ESAS; custom-designed, single items for self-reported ratings of the will to live and hope, using an 11-point numerical analog format (40); the Rosenberg scale of self-esteem (EAER, Portuguese version); the Beck Depression Inventory (BDI, Portuguese version) (54); the Mishel Uncertainty in Illness Scale, Revised; the Rosenberg Self-Esteem Scale; the Reed Self-Transcendence Scale; the Index of Well-Being (52); the Krampen G. Skalen test on the validity of the hope subscale (H-Skalen); the Handanweisung scales for the assessment of hopelessness (H-Scales) (47); the Swedish version of the HHI with the Miller Hope Scale (MHS) and the Beck Hopelessness Scale (36); and the Zurich Illness Adaptation questionnaire (38)

Our results led us to identify the main tools used to measure hope in the setting of clinical oncology, which can be briefly summarized as follows:

The COH-QOL: This is based on a conceptual model with 4 domains (physical, psychological, spiritual, and social well-being). Factorial analysis brings to light 6 factors well suited to this 4-domain model, which generally relate to psychological, spiritual, and physical well-being. The spiritual well-being element includes hope, tested with only one direct question: “Hopeful: (how hopeful do you feel?).”

The HHI: This is the tool most often used in the oncologic setting (4, 36, 52-53-54, 57). The HHI is a short form drawn from a scale of the same name, consisting of 12 items on a Likert scale; the possible score ranges from 12 to 48, where higher scores indicate a greater degree of hope. The items investigated are as follows: I have a positive outlook toward life; I have short- and/or long-range goals; I feel all alone; I can see possibilities in the midst of difficulties; I have a faith that gives me comfort; I feel scared about my future; I can recall happy/joyful times; I have deep inner strength; I am able to give and receive caring/love; I have a sense of direction; I believe that each day has potential and I feel life has value and worth.

The HDS scale: The HDS can be used to assess various domains of the experience of hope (on a graduated scale), i.e., abstract hope, experiential hope, by means of 2 questions: (a) I would like you to think about the word “hope.” What does the word “hope” mean to you? (b) How would you describe your hope at this time? (50).

The H-VAS: This is a visual analog scale 100 mm long, graduated from 0 = no hope to 100 = a great deal of hope. Individuals are asked to describe how hopeful they feel (50).

The MHS: This is a tool originally developed by Miller and subsequently translated and validated in a Swedish version (used in the article considered), comprising a set of 40 items scored on a 5-point Likert scale, measuring the degree of agreement with each item, and providing a final score ranging from 40 to 200 (36).

The Beck Hopelessness Scale: used in the Swedish version in the study considered, consists of 20 items with true/false answers (1-0) and the score ranges from 0 to 20, higher scores coinciding with greater degrees of hopelessness (36).

The Nowotny Hope Scale: This measures 6 domains of hope on 6 subscales: confidence in the outcome, possibility of a future, relates to others, spiritual beliefs, comes from within, and active involvement (36).

A tool specifically developed to measure hope, with custom-designed, single items for a self-reported rating of the will to live and hope using an 11-point numerical analog format (40).

Each of these tools was considered in terms of the psychometric properties of the tests: reliability, construct validity, and concurrent/concomitant/divergent validity.

Reliability

None of the tools was described by the authors as lacking in this psychometric property, in the original versions of the tests or after translation into other languages (4, 36, 50, 52-53-54). In particular, the most often used of these tests, the HHI, had an α reliability coefficient for the total scale in the range of 0.75 to 0.94, with a 3-week test-retest reliability of 0.89 to 0.91 (4), and the HDS had an α = 0.83 (50).

Construct validity

The construct validity identified by the statistical analyses performed in the studies that we examined brings out several factors constituting the construct of hope, presented in detail below.

HHI: the construct validity identifies the same 3 factors as in the HHS (57) from which the HHI was drawn: “(a) temporality and future, (b) positive readiness and expectancy, and (c) interconnectedness” (52)

The Hopelessness Scale identifies 3 factors: feelings about the future, loss of motivation, and future expectations

The HDS identifies 2 factors: authentic spirit (Factor I) and comfort (Factor II) (36)

The MHS generated 3 factors: satisfaction with self, others, and life; avoidance of hope threats; and anticipation of a future (36)

Analyzing the Nowotny Hope Scale led to the identification of 6 main components consistent with the other subscales (36).

Concurrent/divergent validity

The convergent and divergent tools that concur and differentiate the definition of the construct of hope refer to other positively and negatively correlated constructs, mainly QOL, spirituality, well-being, and adaptability, as opposed to anxiety, depression, despair, and physical symptoms, as shown in detail below.

The positively correlated convergent constructs are as follows, identified by means of the tools mentioned alongside each one:

Quality of life, identified with the various QOL scales (38, 40-41-42-43, 45, 47, 49, 51, 55, 56)

Well-being and adaptability, identified with the Index of Well-Being (38, 52)

Spirituality, identified with the FACIT-Sp (53), SBI-15R (53), and Reed Self-Transcendence Scale (52)

Self-esteem, identified with the Rosenberg EAER (in the Portuguese version in the article concerned) (54) and Rosenberg Self-Esteem Scale (52)

The negatively correlated divergent constructs are as follows, identified using the tools mentioned alongside each one:

Anxiety and depression, identified with the HADS (53), GDS (40), and BDI (Portuguese version) (54)

Hopelessness, identified with the Beck Hopelessness Scale (4, 36)

Physical symptoms, identified with the ESAS (40, 50, 53)

Stress and uncertainty in disease, identified with the McCorkle Symptom Distress Scale and the Mishel Uncertainty in Illness Scale-Revised (52)

In addition to the convergent and divergent assessment tools, the studies examined the statistical process for validating the tools used to measure hope, frequently relying on other specific concomitant scales for assessing hope, i.e., the Nowotny Confidence subscale (52), the HHI (4, 36, 40, 43, 50, 52), the H-VAS (50), single items for the self-reported rating of the will to live and hope (40), and the MHS (36).

Discussion

Generally speaking, hope may have to do with numerous aspects. A sense of hope may relate to the medical sphere, i.e., that a treatment will achieve the “hoped-for” results, that a pain will be adequately controlled, that a diagnostic test will confirm the efficacy of a therapy.

Hope may also concern relationships and affections (to be acknowledged as important, to feel loved and accepted, to not feel a burden to others, and so on).

Another type of hope relates to religious faith and/or the spiritual domain (to be “saved,” to go to heaven, to be rejoined with dead loved ones, to give a sense to life, and so on).

Different perspectives, but all oriented towards intercepting aspects capable of supporting a person, especially, and in a very particular way, in their experience of disease.

Given the diverse perspectives from which hope can be studied, the present analysis aimed to investigate the construct of hope by taking an integrated approach in an attempt to grasp the complexity of the person.

Our review focused essentially on how the constituent elements of the construct of hope can be assessed and measured, and how useful such assessments of hope may be; and, more in general, we considered how much attention current research pays to the methodologic aspects involved. We found that, in the light of theoretical research conducted in all directions and in every field (as we saw in the first stage of our review), the construct of hope—in the setting of severe diseases such as cancer, where it plays an important part (as seen in our second, systematic review)—consists of a few factors when we try to analyze it scientifically using the assessment tools available today.

In clinical oncology, the construct of hope has always been assessed quantitatively, barring a few exceptions in which the researchers used qualitative methods (4, 36, 43, 46, 48-49-50, 52-53-54). Such measurements are dependable and statistically valid. Some of the quantitative tools used are more concise and refer to hope as a unitary term (38, 40-41-42-43-44-45, 49, 51, 56). These methods are generally used to assess hope as a constituent part of QOL, though some authors investigate the construct more in depth, in various component parts.

Whatever the perspective taken by the investigator, however, the methodologic features of the tool used to assess or measure hope are important, translating the construct of hope into basic terms, reducing it to a few fundamental elements that the test is capable of grasping.

In short, the factors contained in the construct of hope that are brought out by the most often-used tools include temporality, future, expectancy, motivation, and interconnectedness, while the concurrent and divergent domains identified by other tools include QOL, well-being, adaptability, and spirituality for the concurrent domains, and anxiety, depression, hopelessness, and physical symptoms for the discriminant domains.

More research is needed to clarify the construct of hope at a scientific level.

It is therefore legitimate to suggest that more thorough research is needed into the methodologic aspects of assessing hope, focusing on the numerous tools available for assessing hope that are capable of scientifically delineating the various shades of a construct that transversally involves several human disciplines: medicine, psychology, pastoral care, and philosophy.

Review of the scientific literature does not reveal a clear definition of hope. Multidisciplinary studies are needed to enable discussion among different perspectives (medical, psychological, spiritual, theological) for better definition of the constituent elements of hope in order to support the hope with specific interventions.

Disclosures

Financial support: None.
Conflict of interest: None.
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Authors

Affiliations

  • Department of Pathophysiology and Transplantation, University of Milan, Milan - Italy
  • SSD Clinical Psychology, Fondazione IRCCS Istituto Nazionale Tumori, Milan - Italy
  • Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan - Italy
  • Pastoral Care Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan - Italy

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