Hopefulness in Recovery

“Hope is the belief that there is good in the world,” said one of our clients recently. It’s clear this belief is one she has held on to most of her life and understandably so. It’s a wisdom, one that the world could use more of. Hope can mean different things to different people, but there’s one thing we do know; Hopelessness across conditions is associated with depression and suicide. We’re trying to understand the experience of hope across the acquired brain injury population, and so we’ve turned to the research. 

What do we already know?

• We know professionals may imply and maintain a less hopeful rehabilitation perspective in fear of giving false hope. 
• There are many understandings of hope though researchers across disciplines tend to agree that hope is both universal and specific.  
• Hope can be understood as goal directed, a cognitive behavioral/motivational process (Snyder, et al., 2006).  
• Hope is “a mode of experiencing oneself in relation to reality and time” (Barnard, D., 1995) 
• ABI is a critical event, one that can be understood as a form of biographical disruption where individuals face unexpected life events that rearrange what was expected (Bury, M., 1982). 

What did they do?

The researchers reviewed findings across seven databases to find studies which met their criteria. After an intensive filtering process, the researchers narrowed their search down to 10 studies. From these 10 studies, they identified eleven subthemes which fit into four analytical themes. These experiences of hope collected were from people with stroke and traumatic brain injuries. 

What did they want to know?

They wanted to understand how hope was experienced in recovery and rehabilitation by people with an acquired brain injury. Their research question: “How is hope (as a phenomenon) experienced in the rehabilitation or recovery process of persons with acquired brain injury?” (Højgaard Nejst C, Glintborg C., 2024). 

What did they find?

They found four analytical themes as it relates to hope being: (1) hope as a two folded phenomenon; (2) time and temporality; (3) progress, goals, and visibility; and (4) the alliance; a balancing act requiring good communication skills.  

Theme 1: Hope is a two-folded phenomenon: Hope can be both a driving force in recovery and a source of despair. Some say hope can be the MOST important driving force allowing people to make their situation comprehensible and worthwhile. On the flip side, hope can also become a source of distress when it goes unfulfilled and in conjunction to future thinking. 

“Uncertainty combined with thoughts about the future and having to redefine it, seemed to make persons with stroke vulnerable to feelings of distress and despair. Also, if the person had previous experiences of things gone wrong, they could be afraid that this would happen again and thus afraid to hope: “You can hope for lots of stuff but then half the time it’s going to disappear” (Bright, F. et al., 2011).  

Theme 2: Time and temporality: Time, or some relationship to time, is a common theme that surfaced in the shared experiences of hope. Three sub-themes emerged here. 

1. Living one day at a time: For many people with stroke and aphasia, hope was grounded in the present. This is thought to be a response to the uncertainty inherent in thinking of the future – a way to not think about future, which can vulnerable and overwhelming. 
2. A fixed future: For individuals with ABI in later stages of rehabilitation, the concept of time amplified and their sense of future possibilities became more limited. In later rehabilitation stages, some experienced a sense of resignation about their future potential. The horizon of hope seemed distant and constrained, and they became more focused on retaining function (as opposed to restoring function.)  
3. Self, identity, and desirable futures: Recovery often involved a disruption of self-identity leading to feelings of loss and grief. Hope was strongly linked to individuals’ sense of self and their roles in life. The researchers (2024) say, “It was found that hope arose from what was perceived as meaningful to the participants and their sense of self (roles in life, sense of identity, faith, etc.).  For people with aphasia, hope was more difficult to articulate due to communication challenges, but it remained central to rebuilding their identity. The researchers cite support and positive outcomes for the process of co-constructing personal narratives with persons with stroke and aphasia. This reconstruction and co-construction of identity were significant in the recalibration of hope, enabling individuals to dream up desirable and possible futures, while also living one day at a time. 

In conclusion, the experiencing of hope is fluid, and it is shaped by time and the stages of rehabilitation and recovery. The researchers suggest individuals adjust their hopes and identities as they progress through recovery, process grief, and reconfigure possible futures. 

Theme 3: progress, goals, and visibility: Goals are connected to hope.  

1. Progress as a source of hope: Progress, both personal and witnessed in others, was vital for instilling hope. For individuals with aphasia, meeting others with the same condition helped them understand possible recovery paths. Slow progress could threaten hope, while perceiving progress (personally or from others) increased optimism. 
2. Goals to make progress visible: Setting achievable and realistic goals was another key element of hope. Goals helped individuals focus on recovery and feel motivated. Persons with ABI emphasized that realistic goals were important to avoid feelings of failure or depression.  
3. Goals based on personal wishes: Personal wishes and preferences were critical in setting goals. Engagement in meeting goals and hope increased when rehabilitation professionals aligned treatment goals with the individual’s personal aspirations. On the other hand, ignoring personal desires, such as focusing solely on returning to work, could lead to feelings of hopelessness and frustration. 

Theme 4: the alliance; a balancing act requiring good communication skills. The fourth and final theme which emerged is the importance of a therapeutic alliance in rehabilitation. 

1. Hope Promoting Relationships: A positive, engaging relationships (with strong communication skills) can increase adherence to steps for rehabilitation. On the other hand, a distant and rigid approach (and holding inflexible boundaries) can undermine engagement and hope. This is especially true in early stages of rehabilitation. A balance is important, as being overly close could enable over-reliance, while too much distance may have negative outcomes. Additionally, the therapeutic relationship can be challenged when the person with ABI experiences unmanageable pressure. 
2. Keeping Hope on a Lease: It was found persons with ABI had mixed experiences of how professionals encouraged or discouraged hope. Negative attitudes, such as bleak prognoses and a lack of confidence in progression can harm hope. A balanced approach of optimism and realism is important.  
3. Professional Competencies: Key competencies for working with individuals with ABI include empathy, active listening, optimism, and the ability to understand. These qualities are critical for establishing trust and maintaining hope in recovery. 

What does this mean?

• Hope is a paradoxical concept and therefore requires professionals to make individualized assessments to find out how hope can best be supported (considering time/temporality, social network, and the individual’s personality). 
•  Rehabilitation should be grounded in a bio-psycho-social approach. Danish research in the field of brain injury shows rehabilitation continues to be focused on physical and functional rehabilitation and does not adopt a holistic focus where the person’s existential and emotional situation is considered (Glintborg, C., 2015). 
• It is vitally important, especially when working with those with aphasia, that professionals gain qualifications on how to use supportive conversation techniques and tools. Communication Partner Training (CPT) and Supported Conversation for Adult with Aphasia (SCA) has shown to be useful and are widespread is some countries.  
• Professionals should embrace the ambiguity of hope, as it can be a vital driving force and a source of despair. Professionals should also consider time and temporality during the rehabilitation and recovery process. Make progress visible and tangible. Goals are connected to hope. 
• The co-construction of personal narrative can support a positive view of identity.  
• The therapeutic alliance is vitally important in instilling and maintaining hope. 

Other findings cited: 

• For people with aphasia, the most common source of hope was social relations (other people) as well as spiritual beliefs (Bright, F.S, et al., 2013).  
• Factors identified for maintaining or increasing hope were, among other things: Support, having something to look forward to, and mental health (Bellon, M., 2021.)  

 

Summarized article reference:  

Højgaard Nejst C, Glintborg C. (2024). Hope as experienced by people with acquired brain injury in a rehabilitation-or recovery process: a qualitative systematic review and thematic synthesis. Frontiers Rehabilitation Science.https://doi.org/10.3389/fresc.2024.1376895 

 

Other References: 

Barnard D. (1995). Chronic illness and Dynamics of Hoping. In: Toombs D, Carson RA [Editors]. Chronic Illness from Experience to Policy. Indianapolis Indiana University Press; (p. 38–58). 

Bellon, M., Kelley, J., & Fisher, A. (2021). “The bucket of gold at the end of the rainbow”: personal experiences of hope after acquired brain injury. Disability and Rehabilitation, 44(25), 7974–7984. https://doi.org/10.1080/09638288.2021.2005162 

Bright, F.A.S, et al., (2013). Hope in people with aphasia. Aphasiology, 27:41–58. https://doi.org/10.1080/02687038.2012.718069  

Bright, F.A.S, et al., (2011). Understanding hope after stroke: a systematic review of the literature using concept analysis. Topics in Stroke Rehabilitation, 18(5), 490–508. https://doi.org/10.1310/tsr1805-490 

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182. https://doi.org/10.1111/1467-9566.ep11339939 

Glintborg, C. (2015). Disabled & not normal. Narrative Inquiry, 25(1), 1-21  https://doi.org/10.1075/ni.25.1.01gli 

Snyder CR, et al. (2006). Hope for Rehabilitation and Vice Versa. Rehabilitation Psychology, 51(2), 89–112. https://doi.org/10.1037/0090-5550.51.2.89 

 

Written by: Cheyenne Lee
Photo credit: Wyatt Gehl Photography