Hope in rehabilitation: an overlooked asset?
Over 44 years of interest and research in rehabilitation, I have scarcely considered hope except as something likely to cause distress when it is not realised. My interest started on 9 June 2024 when I wrote a page on “goals and hope in rehabilitation,” now published. I only added hope to contrast it with goal setting from a patient’s perspective. As you can see, I realised considerable research supported hope as a positive influence in rehabilitation.
Like many people, I was worried about giving false hope, believing it was frequently held and to be avoided. In 2002, Charles Snyder and colleagues convincingly showed that our fears about false hope were largely untrue. Their review considered three beliefs: false hopes are illusions that are out of touch with reality, are built on inappropriate goals, and reflect poor planning. The evidence refuted all these. In this post, I explore some proof and conclude that we should encourage and utilise hope and avoid the flipside of hope: hopelessness. Therefore we should use hope in rehabilitation, not ignore it.
Table of Contents
Introduction
“Nor dread nor hope attend
A dying animal;
A man awaits his end
Dreading and hoping all.”
From: Death, 1933, W B Yeats
Hope is uniquely human; animals do not hope because they cannot foresee their future so clearly. Patients in rehabilitation frequently mention hope, sometimes referring to their future and, less often, to hope that their illness has extinguished. We may ask about hope, not with an interest in the phenomenon itself, but to understand the person’s expectations and as a way of exploring their beliefs about the future and values.
Charles Snyder introduced psychological theories about hope in 1989. He was interested in “Reality negotiation, from excuses to hope and beyond”. By 2006, he and colleagues had sufficient evidence to write “Hope for Rehabilitation and vice versa,” a key text covering many ideas still being used and explored. He considered hope to be “a goal-directed cognitive motivational process.”
Like many concepts in rehabilitation, hope is fuzzy around the edges. In 2011, Felicity Bright and colleagues reviewed studies on hope in rehabilitation and found that seven of 20 articles gave a definition, each different! Therefore, we will start by establishing what hope is.
What is hope?
Lord Byron answered this question on 28 October 1815 in a letter to Thomas Moore: “What is hope? Nothing but the paint on the face of Existence; the least touch of truth rubs it off, and then we see what a hollow-cheeked harlot we have got hold of.” I will be less cynical.
Felicity Bright and colleagues wanted to understand hope after stroke. They systematically reviewed the literature, finding 20 studies they analysed using concept analysis. They considered it to have three attributes:
- An inner state of being or strength
- Outcome-oriented, a desired or expected future state
- An active process, assessing and appraising the situation and planning for the future
Other aspects of hope were also identified but considered less essential: it could be broad or specific and concern the present or the future. They also noted various closely related concepts linked to hope, such as expectations, goals, and optimism.
Andy Soundy and colleagues discussed a framework for hope to help analyse the role of hope in recovery and rehabilitation after a stroke. Based on a body of published work, they proposed a model illustrated in Figure 1 in their paper. This shows generalised hope in the centre. This spectrum fragments into four domains or levels of hope:
- Relief of suffering
- Superficial hopes, typically immediate, involve tasks, activities, wishes, etc.
- Meaningful hopes, typically middle-term, include significant accomplishments and interactions.
- Central, personal hopes, concerned with a person’s identity and narrative
The framework then has four outer components:
- Specific or particularised hopes
- Factors influencing hope
- The way a person expresses or manifests their hope
- A spectrum of intensity, from great hope to hopelessness or despair
The studies above and many others have considered different aspects of hope. However, the pre-eminent influential theory of hope is that of Charles Snyder, whose definition is “Hope is defined as a positive motivational state that is based on an interactively derived sense of successful (a) agency (goal-directed energy), and (b) pathways (planning to meet goals).” In his 2006 review, he emphasises that hope “… is the person’s perceived ability or internalized belief that he or she can produce goals, pathways, and agency.”
The crucial feature of hope is that it combines:
- Agency, a belief is being able to control and produce
- Future goals and then to produce and enact
- Pathways or plans working towards the goals.
Hopelessness and despair.
Hope is a variable phenomenon. There comes a point where the absence of hope worsens, leading to an active state of despair or hopelessness, which is, unsurprisingly, closely associated with depression. Indeed, the American Psychological Association defines it as “the feeling that one will not experience positive emotions or an improvement in one’s condition. Hopelessness is common in severe major depressive episodes and other depressive disorders and is often implicated in suicides and attempted suicides.”
Aaron Beck and colleagues gave the original and briefer definition: “Hopelessness can be readily objectified by defining it as a system of cognitive schemas whose common denomination is negative expectations about the future.”
Thus, hopelessness, which is, in effect, negative hope, is the belief one has no agency or future goals to work towards and consequently has no pathways to guide decisions or activities. The extreme low end is despair, “the emotion or feeling of hopelessness, that is, that things are profoundly wrong and will not change for the better. Despair is one of the most negative and destructive of human affects, and as such it is a primary area for psychotherapeutic intervention.”
Hopelessness is associated with a lack of social support. In a study on 42 people after acute spinal cord injury, dissatisfaction with social support was associated with increased hopelessness.
Does hope influence change?
The relationship between degrees of hope and current functioning or future outcomes has been investigated in rehabilitation.
In a study on 108 people many years after spinal cord injury, John Blake and colleagues found expected relationships between the extent of agency and forming pathways and the extent of social participation; greater agency and belief in pathways were associated with greater involvement. The authors additionally investigated childhood attachment as one factor affecting hope.
Hannah Brazeau and Christopher Davis studied 67 people over the early months after acute spinal cord injury. The main finding was that people with more hope in the early stage, about 10-12 weeks after injury, showed more significant improvement in depression, subjective well-being, social reintegration, and experience of pain at 13 months.
Kathleen Korte and colleagues recruited 174 people a few days after spinal cord injury, stroke, amputation, or orthopaedic surgery and measured outcomes three months after hospital discharge. They found that more hope was positively associated with more excellent social functioning three months after leaving the hospital. Interestingly, positive affect measured using the positive and negative affect scale was not associated with better social function, suggesting that feeling happy is insufficient.
Susan Dunn and colleagues collected data from 207 people referred for cardiac rehabilitation after an acute cardiac event. They found that lower participation in rehabilitation was associated with higher hopelessness scores but not with increased depression. This is an interesting parallel with the study by Korte et al., confirming that hope or hopelessness is more than an emotional feeling.
The results from these studies are consistent with the theory and show that hope or its opposite are not the same as depression of positive affect. It would seem reasonable to alter hope to improve the outcome, and that there is a postive role for hope in rehabilitation.
Hope in rehabilitation interventions.
In their article, Snyder et al. (2006) explore many aspects of hope and rehabilitation in detail and contrast their model with other models. They particularly consider how the theory applies in rehabilitation, saying, “The purpose of using hope theory in the rehabilitation setting is to facilitate the patient’s goal-directed thinking. Such goal-directed thought optimizes both the patient’s participation in the overall rehabilitation treatment plan and his or her adaptive coping with the disease (or injury).”
Grahame Simpson has participated in two small randomised studies involving people with traumatic brain injury. The first, undertaken in Australia, involved 17 patients who had experienced traumatic brain injury with post-traumatic amnesia of more than one day and who had significant hopelessness. Eight received a manualised psychological treatment programme (Window to Hope). There were ten sessions lasting two hours, held weekly. At the end of the programme, the treated group showed significantly reduced hopelessness.
A second trial, which took place in the US with 35 similar patients, again showed a benefit at the end of treatment. However, both trials had a crossover at the end of treatment, so the benefit maintenance could not be studied.
Silvia Hernandez and James Overholser have undertaken a systematic review of interventions that aim to alter the hope or hopelessness of older adults. They found that cognitive behavioural treatments reduced hopelessness in depressed people, and life-review-based treatments increased hope. Other therapies were not associated with benefits. They did not report on associated functional or social changes.
These studies suggest that hope or hopelessness can be altered. However, we need to find out if there is any more distal benefit on social participation or increased activity performance.
Patient experience of hope in rehabilitation.
Andrew Soundy and colleagues reviewed studies investigating factors that influenced hope in patients with stroke or spinal cord injury. They used a thematic analysis to find positive and negative influences. Data from ten studies on stroke and seven on spinal cord injury were used.
They extracted five factors that generated hope and promoted adjustment:
- Involvement in rehabilitation, especially learning about the condition and recovery and achieving meaningful activities
- Use of goals in rehabilitation, mainly if they were attainable, tailored, negotiated, and meaningful
- Using cognitive strategies, such as recognising their strengths, acceptance of the situation, and altering their life view and future goals
- Support from the rehabilitation team, including information, being listened to, humour, and involvement with the ability to choose.
- Support from peers and patients, family, and, for some, God.
Four factors challenged hope:
- Physical, including the onset of the condition and exacerbations, reduced recovery rate or failure to achieve, and waiting
- Psychosocial, such as having no new goals, failure to achieve goals, goals that highlight restricted potential, and changed roles
- Rehabilitation factors, including insufficient information, social isolation, and loss of identity
- Negative social interactions, such as being unable to talk about their situation, lack of empathy, lack of preparation for discharge
Camilla Nejst and Chalotte Glintborg reviewed qualitative studies involving people with a traumatic brain injury, undertaking a thematic analysis to discover the critical aspects of hope experienced in this group. They analysed data from ten studies (128 patients). Four main themes were extracted:
- Hope has two sides: a driving force or a source of despair
- Interaction with time: early on, only live one day at a time; mid-term, goal of a fixed future; later, goals around self and identity
- Progress and goals: progress engendered hope, stasis removed hope; goals engendered hope by making progress visible; personal goals
- Alliance with professionals: good relationships increased hope; professionals circumscribed hope; personal characteristics of the professional (e.g.empathy, enthusiasm)
Synthesis: Hope in rehabilitation.
What can we learn from this?
Hope and its opposite, hopelessness, are undoubtedly valid concepts separate from emotions such as optimism and depression. The difference arises from the two components of hope: imagining a future state as a goal and working out how to achieve the goal. When one can no longer envision a future, one naturally feels hopeless and experiences despair.
The concept of hope is congruent with the General Theory of Rehabilitation. Hope is a natural response to change and a component of the natural adaptation response. The idea of hope is also congruent with the rehabilitation process.
Rehabilitation, therefore, has several crucial roles in facilitating a person’s adaptation. The first is a formulation, which provides the information the person needs to set goals and work out pathways to achieve them. Occasionally, this may be sufficient.
The second, usually needed, is to interpret the information so that the person has reasonable hopes, within the bounds of the possible or not too far above the boundary. However, the rehabilitation team should avoid rejecting the person’s hopes in the early phases. Goal adjustment should always be allowed to happen naturally if possible.
Third, the person will likely need assistance in planning the pathway because they often need to be made aware of what can be done, how it is done, timescales, etc.
In other words, rehabilitation should build on a person’s natural hope rather than appear to be a separate process that seems antithetical to hope.
In people who have lost hope, rehabilitation can re-instil hope.
Rather than avoiding the topic of a person’s hope, we might do better to discuss it openly from the beginning. Asking someone what their hopes of rehabilitation are may have many benefits and open otherwise challenging discussions.
With active listening and tactful, empathetic questioning, we may gain insight into a person’s values and priorities, which can assist in setting goals. We will learn their understanding and beliefs concerning their situation and the future. The person may have some interesting ideas on how to achieve their goals. We will be increasing their sense of autonomy and self-efficacy.
During the early discussions, it is vital never to say something is impossible. Conversely, one should refrain from actively agreeing with anything that seems impossible.
Asking someone about their hopes may raise difficulties. A viewpoint written by Abby Rosenberg and colleagues on holding hope for patients with serious illness may help you understand and respond to some dilemmas. For example, a patient’s hopes may be inconsistent and need help navigating between them. They also suggest asking what else when a person has put forward an implausible or inconsistent hope to encourage the person to consider a range of hopes.
Their final paragraph summarises hope well: “Rather than being concerned that hope is either so fragile that it can be lost, or so powerful that it can overwhelm decision making, clinicians should remember that hope is protective, if not necessary, for managing serious illness. Hope is fluid, expandable, and persistent. Holding complex, flexible, and diverse hopes enables patients to believe in the unlikely while simultaneously accepting the inevitable. The role of clinicians is to support both.”
Conclusion
Relatively late in my career, I have discovered that the hope our patients have is something we should openly ask about and embrace rather than ignore or avoid, as I have for the last 40 years. In adversity, hope is an inbuilt, entirely natural adaptive response. We should facilitate the person’s use of hope by asking about it, adding their aspirational goals and pathways to our formulation, and assisting them in setting and using goals, always accepting their hope as valid without passing judgment. The hope theory also adds to the general rehabilitation theory, increasing its credibility.
1 thought on “Hope in rehabilitation: an overlooked asset?”
Dear Derick Wade.
Thank you for opening up reflections on hope, such an overlooked topic in rehabilitation.
In an ethnographic fieldwork on goalsetting in Parkinson’s disease rehabilitation, I noticed how patients mentioned different versions of “hope” during goal-setting sessions. It made me reflect – where is hope in rehabilitation literature and what is the role of hope in clinical rehabilitation? Exploring hope, I found that the notion of “hope” opened up much more profound and illuminating talks with informants than goals and goal setting did, but I also found hope a complex phenomenon.
In my view, hope is too important not to explore more fully in and across rehabilitation contexts. The Danish White Paper on Rehabilitation (2022) recommends that rehabilitation is based on a person’s hope. We need to explore how that works in practice – how can we work with hope?
For those interested in hope, the Hope Studies Central, University of Alberta, run by Professor Denise Larsen, has a brilliant hope reference web site: https://sites.google.com/ualberta.ca/hopeliterature/home ?
Best regards
Merete Tonnesen , Postdoc, PhD & MA Ethnography and Social Anthropology,
Researcher at DEFACTUM, Denmark, merete.tonnesen@rm.dk
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