The World Health Organization (WHO) and the International Spinal Cord Society (ISCS) (2013) described spinal cord injury (SCI) as a medically complex, life-disrupting and life-long clinical condition. According to a report on disability around the world (WHO, 2011), an estimated 600 million individuals worldwide have some form of disability, 2% of whom are considered to be physically disabled (Babamohamadi et al, 2011). In Brazil, a census conducted by the Brazilian Institute of Geography and Statistics (IBGE) (2010) stated that about 45.6 million Brazilians have some type of disability. Some 7% have a physical disability, including those with paraplegia, tetraplegia, hemiplegia, lack of a limb or part of a limb, have difficulties in walking or an inability to walk.
The incidence of SCI has been estimated as between 9 and 50 cases per million in Brazil (IBGE, 2010); thus, SCI appears to be a serious public health concern affecting quality of life (Monden et al, 2014), which is reinforced by its high incidence among young male adults, reflecting a significant level of urban violence (Nogueira et al, 2016).
Other important factors are the effects of SCI in the physical, psychological and social spheres, because it alters the motor, sensory, autonomic and psycho-affective conditions of individuals (Ministry of Health, 2015). The overall impact of SCI on an individual and society depends on several factors. These include the age at which the injury occurred, the availability and quality of health resources and the physical, psychological and social environment of individuals (WHO and ISCS, 2013).
An SCI affects an individual's identity, influencing internal issues related to an individual's psychological health, behaviour patterns and personality traits acquired before the injury (Ferreira and Guerra, 2014; Ministry of Health, 2015).
The physical, sensory and psychological repercussions of SCI generate a feeling of vulnerability in the person, resulting in restrictions to the process of rehabilitation and social reintegration (Trierveiler et al, 2015). These repercussions promote the construction of strategies to manage challenges through positivity, self-confidence, optimism and reframing (Babamohamadi et al, 2011). Consequence management occurs through the development of hopeful goals, which assume a creative role in the possibilities for future action (Van Lit and Kayes, 2014).
Hope represents the internal impulse of restlessness and search for meaning in life. It is an experience that can reinforce the ability to fight and persist through adversity (Lohne and Severinsson, 2006). Thus, it is necessary to consider hope in the context of living with the repercussions of an SCI to allow nurses in rehabilitation to understand the complexity of the SCI patient's experience. Therefore, nurses could use hope to help SCI patients develop effective coping strategies and achieve goals (Lohne and Severinsson, 2006). This knowledge should help them to care for patients in a holistic and comprehensive manner and would be a driving force for the wellbeing of patients. Thus, the present study aimed to understand the experiences of individuals with SCI.
Method
This qualitative ethnographic study was based on Ernst Bloch's The Principle of Hope (2006), originally published in 1954. This theoretical framework informed the meaning of hope and guided the data-analysis process.
Understanding that hope plays a fundamental role in facing the physical, social and environmental challenges after an SCI (Van Lit and Kayes, 2014), a dialectic approach to hope was chosen, examining its dynamism, temporality, objectivity and concrete content, that can result in the achievement of goals and new personal and collective desires (Bloch, 2006).
Data were collected from the participants' discourses, life history, daily lives, and social behaviours (Zago, 2013). This ethnographic approach made it possible to investigate their reality and describe the interdependencies and interrelationships among a group of individuals with SCI (Morgan-Trimmer and Wood, 2016).
The researcher (MAZ) immersed herself in the field with long-term interactions with participants, considering herself both a participant and an observer. The ethnographic study was based on ‘symbolic interactionism’, where individuals are viewed as active agents and changeable elements in society, interacting dynamically in their social life. This theoretical orientation considers that the meanings of life among individuals of the studied group are reflected in their shared beliefs.
To undertake this study the researcher's work was divided into the following four stages:
Figure 1 shows a flow diagram of the method of research construction and collection.
The study was conducted at the Catarinense Rehabilitation Centre (CRC), a specialised rehabilitation centre (SRC) located in the southern region of Brazil. This institution is the referral body for the state of Santa Catarina, offering several specialised rehabilitation services that are performed by a multidisciplinary and interdisciplinary team. The services cater to the following clinical conditions or practice areas: neurological disorders, autism spectrum disorder, cerebal palsy, orthoses, prosthetics and locomotion aids, and paediatric and outpatient nursing.
The CRC conducts monthly meetings of the Support Group for Spinal Cord Injury (SGSCI). The group aims to provide a warm and intimate environment for the health team, individuals with SCI, and their family members or caregivers. This is a space where collective and individual experiences with SCI are articulated, symbolising a rich source of social and subjective meanings of hope. The researcher was involved in these meetings with the participants and was a part of the nursing care developed in the nursing outpatient department of this CRC.
The immersion allowed data collection and enabled the development of nursing care with a focus on rehabilitation, including services pertaining to skin care, mobility, hygiene and comfort, dialogue with relatives, and referrals to other public health services.
In the first month of the immersion (Stage 1), the researcher undertook total participation in the study site. However, she did not declare her investigative intentions, so that she could understand the roles of the healthcare team and of the group studied. From the second to 11th months of the immersion (Stage 2), the researcher remained in close contact with the group and shared her research intentions with them. Between the 12th and 13th months (Stage 3), the researcher gradually disengaged from the community, and she interacted with the community only during pre-scheduled interviews with SGSCI participants or in meetings. Finally, in the 14th month (Stage 4), the researcher completely disconnected from the investigated community and was involved only in collecting objective data from the scenario studied.
Interviews were conducted with individuals who attended SGSCI meetings during the study period. Exhaustion sampling was employed, in which all individuals with SCI who participated in SGSCI meetings were selected. The following inclusion criteria were employed: being diagnosed with SCI and being over 18 years old. The exclusion criterion was having cognitive impairment, as indicated by a score of less than 19 points on the Mini Mental State Exam (MMSE) (Brucki et al, 2003).
Of the 19 eligible individuals, one was excluded from the study owing to the MMSE criterion, and the final sample constituted 18 individuals.
Data were collected through observation during the study period in Stages 1 and 2 and semi-structured interviews were conducted from November 2016 to January 2017. Appropriate ethical principles were followed, including obtaining informed consent from participants, as recommended in Resolution 466/12 of the National Health Council. The study was approved by the Commission for Research Ethics and the research centre of CRC. The study was registered with the Certificate of Presentation for Ethical Appreciation (57797816.8.0000.0121, dated 13 October 2016).
An interview guide was developed by the researchers with the support of nurses who worked in the study setting and reports of individuals with SCI. Important elements were listed to understand the experiences of hope while living with an SCI to achieve the real meaning of experiencing an SCI. To validate the interview guide, a pilot interview was conducted, which aimed to identify any possible need for adjustments and adaptations. The version used to collect data contained questions about each participant's life history from childhood to the day of the interview, the meaning of hope in their life, their personal concept of hope, and the limits and potentialities of hope in the process of living with SCI.
Interviews were conducted individually, in a quiet environment, using the semi-structured interview guide. The interviews were recorded using a portable device and transcribed and returned to the participants to read, to ensure that the data were accurate and to maintain a relationship of trust. The average interview duration was 40 minutes.
Data analysis comprised organisation, in-depth and exhaustive reading of the data, search for themes of emerging meaning, and contextualisation and interpretation of the data. The theoretical referential for analysis was Bloch's dialectic of hope (2006).
Findings
The present study found that the concept of hope was an important part of participants' daily lives and allowed them to see a future for themselves. They spoke about their successes and failures and everyday experiences. They reported situations in which they experienced hopelessness, fear and anguish, and the obstacles they had encountered in their path. But participants also reported that hope offered them the energy to face the future.
Analysis of the interview data generated an analytical category with three interrelated themes. Figure 2 illustrates the central category ‘restless hope’ and its interrelations with the themes ‘the foundations of hope’, ‘the process of hope’ and ‘to become hopeful’, representing the incessant and dialectical relations in the process of living with SCI.
Restless hope
For the interviewees, hope was a process of ‘dialectical construction’, which is founded in the restlessness of the individual as they grapple with their life after SCI. This process is permeated by propelling forces (such as the urge to master using a wheelchair or return to work) and/or obstructions (such as an initial lack of upper body strength in someone with paraplegia or a lack of facilities for disabled people at a workplace). It is determined by economic, social, historical, and cultural factors in a society that has its own politics and social relationships. Beyond that, it presents a component intrinsic to the individual—hope is different for everyone.
The following are four excerpts from interviews with participants, which exemplify what hope meant to them.
‘I believe that hope is a paradox, sometimes inexplicable, that people can't explain how it can be, what is the level of it, you know? It is, sometimes, incomprehensible to some people, but hope is something real. It is true. All hope is true, and everybody has hope.’
‘Hope is to wish for something that we want, and this can be even just wanting a cup of water [or] winning the Paralympic Games. So, what matters is not only what you want, but what you would do to [achieve] what you want. For this, you need dedication and effort.’
‘My hope is to achieve independence, you know, to get my autonomy back.’
‘Hope, for me, is everything. It is to go after something that you want. I had hope from the very beginning, and proof of that is that I fought on, I learned to live in the wheelchair, I worked, I studied, I nourished my family, and I keep on doing it. And, I am sure that, after I build my house, I will have other ambitions. It's like this, we draw up a plan, we conquer, live, and then draw up another. Life is like this.’
In the participants' stories, hope had content and meaning. Hope was beyond just a concept or an ideal. It involved concrete experiences and was lived daily. It represented strength, determination, a dream, and a utopia; it is mutable and capable of promoting optimism and being able to see a positive future. The act of hoping, as in living with hope, involved truly wishing for and believing in possibilities for the future.
Multiple representations of hopefulness emerged when it was conceptualised. However, as with other emotions, hope emerged as a singular, unique and personal feeling. Hope was a movement that permeated the perception of independence, autonomy, self-esteem, functionality, utility, and personal truth. It was part of life experiences and comprised daily attitudes, expressing concrete human perceptions about life.
The essence of hope emerged from the participants' interviews and comprised three mutually inclusive thematic themes that change and interact constantly (Figure 2). Thus, the foundations of the process of hoping and becoming hopeful emerged.
Theme 1: foundations of hope
The foundations of hope lie in the life story of the individual. These foundations are laid at birth and include the individual's personality, experiences, family and social relationships, leisure activities, beliefs, schooling and jobs, dreams and purposes, faith, and their way of looking at life. The existence of the individual before SCI comprised memories, longings, and dreams that were modified by life, creating new memories, longings, and dreams.
This life history made up the fundamental theme of hope, interconnecting with the other themes in a dialectic relationship. The life story sustains ideas and consolidates the learning process based on experiences, personality, independence, support networks, and how decisions are made. The following words of the participants revealed the foundations of hope in their own life stories.
‘Who am I? I'm the same person. Only time has passed.’
‘I was always an optimist; I don't know how to explain to you where this strength comes from, which makes me see the positive side. This is already in my blood.’
‘Without faith, hope is dead, empty, invisible. But with faith, hope forms itself, it has a body, it has colour, it has size. That is what I believe.”
‘Friends and family build you up through your life; they show you that in bad situations the fight is not only yours, it is a shared fight. You see that strength doesn't need to come only from yourself.’
This theme showed how temporality (a person's experience of time) is implied and ingrained in hopefulness. These stories showed how the participants referred to life before SCI, how they considered their support networks, especially the family, to be a foundation of hope, and how memories of experiences grounded their hope.
A rehabilitation nurse who understands the power of hope can broaden possibilities, establish priorities, and inspire change and perseverance. Such a nurse can become a source of power and will for the patient (Lohne and Severinsson, 2006). From this perspective, a rehabilitation nurse is capable of understanding the potential of the relationship between family members, friends, and individuals with SCI, acting as a promoter of hope to maintain these bonds and to strengthen trust between them all (Chaves et al, 2015).
Theme 2: the process of hoping
This theme revealed that the process of hoping is part of the process of living; that is, it is presented in constant dialectical movement, it is mutable, and it is a modifier that is both conditioned by, and conditions, the other themes of hope. The life that existed before an SCI was ruptured and changes occurred in daily life after the trauma. This process involved the confrontation of challenges resulting from these changes; and the restructuring of life in aspects related to autonomy, functionality, independence, accessibility, and social inclusion; and the anxiety, fear, and sadness that accompanied frustration. All these experiences were in contrast with the peace, courage, and happiness that accompanied successes in everyday life.
The handling of the present, of the now, brought to the fore obstacles and conflict in the process of living with the experience of being a person with SCI. It blurred the horizons of hopefulness. The words of the participants showed that hope allowed them to have the strength to fight against obstacles, turning them into possibilities by assuming a new perspective.
‘Getting out of a wheelchair is a hard thing to learn; there is a lot of falling and frustration. But I searched for autonomy; I didn't want to sit, waiting for someone, forever.’
‘What changed the most for me was the question of accessibility; when I wanted to go out, it was as easy as going out the door, and now I need to think about a thousand things.’
‘Getting around the neighbourhood is pretty difficult; there is no ramp, no sidewalk. It's hard. But the truth is, if I never get out, this will never change. So I need to get out.’
‘Something important for us to keep on trying is the power of knowledge. We must know ourselves and know things that will help us to live. Things about urinary infection, about [drinking enough] water, about sexual relations.’
These testimonies were permeated by emotions that made up the real meaning of hopefulness, because, in this process, limiting obstacles and facilitating potentials could be identified and faced.
The moment SCI occurred and the first years of experiencing the injury brought forth negative emotions and the prioritisation of what had been lost. Comparisons with the past life and living with a sense of longing for the past—especially its normality, freedom and independence—emerged in all the testimonies. This moment was identified as the temporary lack of hope associated with the perception of an end to life due to immobility, invisibility, vulnerability, and dependence. However, as time passed, transformations occurred and hope promoted comprehension and acceptance of the body and of one's life (Lohne and Severinsson, 2006; Van Lit and Kayes, 2014).
When the individual relied on hope as a coping strategy, he or she started exhibiting a change in behaviours, movement, and motivation, which provided the necessary determination to address the hardships of living with SCI in a society that, in general, is not prepared to accept and respect differences (Babamohamadi et al, 2011). In the daily life experienced by the interviewees, accessibility was viewed as an obstacle that limited personal rights. Thus, social, environmental, and architectural aspects had implications for the development of an individual in the society, because they can restrict social participation, influencing the basic right of freedom of movement and feeding negative thoughts. Additionally, they influenced the process of becoming resigned to a new life.
Accessibility also emerged as an attitudinal component that stemmed from the information and shared knowledge about the injury, the resulting disability and its implications. This knowledge created a shared attitude of responsibility and provoked discussions about changes in the social environment that were needed—such as changes to public transport. Therefore, health professionals, especially nurses, should facilitate this path by encouraging a patient's hope. For example, nurses could encourage a person who has become paraplegic and who previously enjoyed sports to adopt another, such as wheelchair basketball or archery. Nurses could encourage a driver to learn to use a specially adapted car. Staff working in this area need to establish trust with their patients and encourage and guide them to face the challenges of their disability. Living with hope involved several contradictions, potentialities, vulnerabilities, and singular perceptions related to the participants' personal lives. However, among all those stories, we observed that hope was not only a pragmatic term used by the participants, but also a living concept related to their conquests and limitations. Hope was a motive, an instrument and a result of every planned, desired, executed, and concluded activity, irrespective of whether or not it was successful. Thus, for the participants in this study, hope manifested in daily goals, was rooted in their daily lives, and indicated a potential for self-reliance.
Theme 3: to become hopeful
Participants showed dissatisfaction with conformity and anger with inaction, clearly expressing goals as agents for change.
‘I remember the day I wanted to eat chocolate, so I asked my ex-wife to give me some. She held it over my chest and smashed the chocolate in a hundred small pieces, and then told me: “You want to eat chocolate, there it is!” It took me over three hours to eat the first piece; I held it with two little fingers, brought it close to my mouth, and then I would drop it. After that I decided that I would do what I wanted to do, and nobody would do it for me. She taught me that, if I wanted to be someone else beyond the wheelchair, I would need to do it myself.’
‘My hope was to drive a car again, and I did it. My hope was simply to do anything I wanted to do, and I did.’
‘Well, I have goals and I try to create new small goals to reach my bigger goals. Because my main goal is to participate in the Paralympics, and, for this, you need to do a lot of things that are involved in this process. You need to work hard to get there.’
‘What strengthens hope is when you have plans and these plans start to materialise. You do everything to make it work out.’
Hoping emerged as a dynamic process that encouraged transformation, starting with dissatisfaction with reality. Therefore, this theme is essential for promoting hope. To become hopeful was the ‘goal’. The goal referenced future desires for reality based on the past and exercised in the present.
Goals were set based on what is acceptable and possible to be achieved. Goals were simple or complex in practice, and they had varying significance for each individual.
This theme focuses on the participants' anxieties, wishes, rediscoveries, and redefinition of aspects of life based on their life story. In other words, the achievements and constant evaluation of results.
The dialectical approach views hope as a process that includes the beginning and end of action. This is the hope that emerged when a result was achieved because of an established goal. Subsequently, new goals and personal desires were created.
The participants reported the meaning of hope as a driving impulse of creative attitudes and the process of producing concrete goals. The data revealed that hope was considered as a real experience based on personal needs.
These results showed that hope is, in fact, the opposite of acceptance or adaptation; rather, it is a movement of divergence and nonconformity with reality. This phenomenon was substantially related to the creation of expectations and objectives, future paths, and possibilities or probabilities.
Finally, in essence, hope emerged as a ‘hunger’ that worked like an ambition, projecting itself into a hopeful future that involved searching for happiness, gradually and systematically. In a never-ceasing quest for the new and creative, every individual was his or her own agent of change and was responsible for injecting dissatisfaction, instigating criticism and reflection, and trying to trace new routes and goals.
A rehabilitation nurse drives hope by facilitating positive attitudes toward a patient's abilities and competencies. This is accomplished through the implementation of health promotion activities aimed at empowerment, autonomy, and exercising the power of choice as a strategy of care for the individual (Ribeiro et al, 2017). Box 1 includes some ways in which nurses can foster hope.
Limitations
The limitations of the study include the limited time for data collection, the small sample size, the use of a single research setting, and the lack of recent scientific literature (from the past 5 years) on rehabilitation nursing in the context of hope.
Conclusion
SCI presents numerous changes in the life of an individual, which reverberate in the physical, psychological, occupational, and social spheres. Because of these changes, every individual chooses a way to confront reality, and to achieve possible changes. Strategies to overcome obstacles originating in daily life emerge, with hope being the positive theme. It is creative and is based on the individual's needs. It provides a path for the act of living.
Hope can be understood as a constant and unstoppable dissatisfaction with reality or as a restless quest in a search for the new. It is considered as a theme that promotes goals, and is influenced by social, cultural and economic factors. The process of hoping begins with an individual's daily experiences. It is based on the life history of the individual and feeds itself by the construction and execution of goals.
Using hope as a motivational instrument, being optimistic and creative, and exerting autonomy and independence provokes a surge of positive opportunities for confronting life, such as self-esteem, happiness, determination, freedom, and a sense of being useful. Hope is the precious key needed to open chests sealed by insecurities and a fear of the unknown, originating from the disruption caused by the diagnosis and the formation of new desires that are possible to achieve.
Further, hope works as a principle for the practice of nursing care, grounding the rehabilitation process through the recognition of the autonomy and independence of the care recipient, considering his or her personality and personal desires. A rehabilitation nurse who recognises the power of hope is capable of observing the behavioural changes of their care recipients. This in turn reveals possibilities and optimises social reintegration. Thus, hope is more than an abstract concept because it deepens the essence of the individual through respect for his or her individuality.
The present study has implications for future research. It is significant in that it helps to reduce the knowledge gap regarding the concept of hope among individuals with SCI and reveals concerns originating from an in-depth analysis of participants' narratives. Rehabilitation nursing represents the incentive source of hope, functioning as a means for care recipients to sustain themselves and reach their goals.