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To systematically search the literature and construct a meta-synthesis of how choice and control are perceived by people with spinal cord injury (SCI).
Data Sources
Medline, Academic Search Premier, CINAHL, Cochrane, EMBASE, HealthSource, ProQuest, PsychInfo, SAGE, and SCOPUS were searched from 1980 until September 2018 including all languages. Reference lists of selected studies were also reviewed.
Study Selection
Eligible qualitative studies included perspectives about choice of control as reported by people with an SCI. Studies were excluded if they included perspectives from other stakeholder groups. A total of 6706 studies were screened for title and abstract and full text of 127 studies were reviewed resulting in a final selection of 29.
Data Extraction
Characteristics of the studies were extracted along with any data (author interpretations and quotes) relating to perspectives on choice and control.
Data Synthesis
First-order analysis involved coding the data in each study and second-order analysis involved translating each segment of coded data into broader categories with third-order analysis condensing categories to 2 broad overarching themes. These themes were experiencing vulnerability or security and adapting to bounded abilities.
Conclusions
Perspectives of choice and control are influenced by interrelated environmental, interpersonal, and personal contexts. From a personal perspective, participants reported a readiness for adaptation that included turning points where emotional and cognitive capacity to make choices and take control changed. Health professionals need to be responsive to this readiness, promote empowerment and foster, rather than remove, hope.
Spinal cord injury (SCI) occurs in both traumatic and nontraumatic ways with the most common causes of traumatic SCI being motor vehicle accidents, falls, violence and sport.
Nontraumatic SCIs are more insidious such as development of spondylosis causing compression, vascular issues, tumors, and inflammation affecting the neural tissues in the spinal cord.
Injuries can occur at different levels of the spinal cord and may be incomplete or complete resulting in different experiences and classifications of resulting disability.
Across the variable classifications of disability, all individuals with SCI experience considerable change to their lives from disruption of their motor and sensory abilities.
Participation is an important concept in relation to functioning, levels of disability, and maintenance of health and is defined by the World Health Organization as “involvement in a life situation.”
Participation in life depends on performing tasks such as activities of daily living, having relationships, and engaging in social activities and occupations commensurate with one’s life stage, goals, and values. The capacity to participate relies in part on choice and control over one’s life. Within Western cultures with individualist values there is a strong need for control that is satisfied by having power to make choices as well as access to different choices.
People with disabilities (including those with SCI) can frequently have their need for control undermined by physical, cultural, and institutional environments leaving them in a vulnerable position with a chronic lack of power in society.
Decades ago, the disability movement called for services to holistically approach the needs of people with a disability and to provide support without discrimination to ensure human and health rights were upheld.
The philosophies, standards, and regulations underpinning these policies and associated legislation are supported by evidence suggesting that choice and control over services enables people to be empowered and self-determining.
Greater understanding of what choice and control means to those with disability may support implementation of policy and equip health professionals with knowledge to be genuine and empathetic with consumers to meet their need for choice and rights for control in individualized and personalized ways.
Therefore, the purpose of this review was to synthesize the knowledge generated through a range of methodologies, samples, and interpretations on how choice and control is conceptualized by people with SCI. The question guiding this review was, “What are the views of people with SCI on their ability to exercise choice and control in their daily life?”
Methods
Our review was registered with the International Prospective Register of Systematic Reviews, PROSPERO, in May 2016. As the research was about perspectives, we chose to only include data from qualitative research.
Search strategy
Electronic databases searched were Medline, Academic Search Premier, CINAHL, Cochrane, EMBASE, HealthSource, ProQuest, PsychInfo, SAGE, and SCOPUS from 1980 until May 2016. The search was rerun from 2016 to September 2018 with EMCARE replacing CINAHL and no search in SAGE or ProQuest as these databases were no longer available to us. Papers published prior to 1980 were situated in an institutionalized context and therefore unlikely to be relevant. The operational definitions of choice and control are based on a psychological perspective that understands choice as the opportunity to make decisions when presented with 2 or more options, while control is the opportunity to influence an action by initiating, maintaining, ceasing, or changing form, strength, or rate.
(p5) We used the search terms of decision making, autonomy, personal autonomy, and agency for choice; and personal control, power, and self-determination for control. These search terms were initially established in Medline (supplemental appendix S1, available online only at http://www.archives-pmr.org/), were peer reviewed by an academic librarian, and then adapted for use in each database. There were no limits on language of studies, and reference lists of relevant studies were hand searched to source additional papers.
Study selection
Selection began with removal of duplicates followed by double review of each title and abstract and full text using Covidencea software. A third reviewer resolved any conflicts that arose. Selection of references for inclusion in the meta-synthesis were based on the following inclusion criteria: (1) participants over 18 years, had SCI of any sort and lived in the community; (2) data from people with SCI could be separated from other participant groups (ie, health professionals, caregivers); (3) included perspectives about choice and control; and (4) qualitative research design. Exclusion criteria included (1) data from people with SCI could not be extracted from other participants and (2) did not include any data about choice and control or did not provide enough detail to inform our understanding of the concepts of choice and control.
was conducted. Two reviewers critically appraised all the selected papers and the appraisal findings were compared and discussed to reach agreement about interpretation. Appraisal decisions were based on what was included in the journal articles which may have been subject to reporting limitations.
Data analysis
The process of analysis and synthesis followed Noblit and Hare
involved 2 reviewers reading all the studies in full and identifying findings that related to the concepts of choice and control. Any differences in understanding of concepts were discussed and resolved by consensus. Identified data were then extracted into a single spreadsheet and each segment of data coded. Participant quotes were included against the relevant piece of coded text. The second-order analysis compared and sorted coded data from the spreadsheet into broad categories and was conducted independently by 2 authors. Third-order analysis included discussion among all authors to compare the 2 sets of categories and further synthesize and reduce the data into broad overarching themes with subthemes.
Rigor
A team of researchers were involved in this review to strengthen the findings.
The update of the search yielded 9 new papers for analysis and synthesis. The findings from these papers were consistent with our existing themes and subthemes and we, therefore, reached data saturation with no new findings emerging.
Findings
Search outcomes
Following removal of duplicates, there were 6706 studies for title and abstract screening which then left 127 articles for full text retrieval and review. Full text review reduced the number of included studies to 29. Reasons for exclusion are detailed in the flow chart provided in figure 1. One study was in Spanish and needed interpretation.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
was published in 2018 from Australia. Overall, the studies included perspectives from 801 participants. Two studies drew their data from the same group and so their 11 participants (men) were only counted once.
Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
The findings from the appraisal are available in table 2. A consistent methodological limitation across the studies was a lack of explanation of the role of the researchers, their motives for conducting the research, and whether there were existing relationships with the participants.
Table 2Critical appraisal against McMaster criteria
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
Moving between first-, second-, and third-order analyses enabled reduction and synthesis of the data into 2 interrelated themes. The 2 themes and their subthemes are explained below. Source documents for each theme and subtheme can be found in table 3 and supporting quotes for each theme are provided in supplemental appendix S3 (available online only at http://www.archives-pmr.org/).
The first theme captures data about environmental and societal factors which generate vulnerability or create security following SCI. Reliance on others to feel secure at times limited choices and undermined control. Social networks including health professionals influenced opportunities and facilitated roles available to participants. The balance of power and trust between those with SCI and their paid and unpaid caregivers, their health professionals, and their friends or family were key determinants as to how vulnerability and security were experienced. To enable people with SCI genuine control over their lives, health professionals needed to listen and be responsive.
Enforced passivity
Participants were forced into passivity by social expectations of compliance, overprotection, being given choices that were not genuine, and environmental barriers. Worry about being an imposition on others
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
diminished their power and, hence, decreased control over their life. Some participants described their experience in institutional care as being at the “mercy of staff”
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
Participants needed systems to be working in their favor to get the necessary equipment and resources to have control over reconstruction of their lives.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Lack of control over their own abilities as well as lack of control over community responses to their situation created limitations on choices about social options.
There were accounts of participants choosing to pursue certain activities to earn respect from others, but instead experiencing disapproval due to the perceived risk of harm.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
(p211) when in the wheelchair. Others found that when they ventured out, they were offered unsolicited assistance by community members and received attention that they felt was unnecessary and at times generated feelings of anger.
Having reliable social and community networks provided both tangible (access, opportunity, resources) and nontangible (friendship, encouragement, honesty) means of support.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
There were grave concerns expressed about the potential for relationships to break down in the face of shifting responsibilities and participants worried about being an imposition.
The capacity of people with SCI was highly influenced by the power relationships with the health professionals they had contact with. Participants wanted to be able to take responsibility for their care
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
There seemed to be little accounting for changing ability to exercise choice and control. For example, participants may not have felt emotionally able to make decisions or process a lot of information early in their recovery
However, this was not always the case, with some participants describing health professionals who were sensitive to their changing needs and to their readiness for both information and control over their choices both in rehabilitation settings
This theme reflects the role that the ability to control change and make choices has over the process of adaptation following SCI. This process was reliant on both external resources (support and information) and gathering personal strength.
Reconciling loss
Initially participants reported strong feelings of loss,
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Starting a new conversation: engaging veterans with spinal cord injury in discussions of what function means to them, the barriers/facilitators they encounter, and the adaptations they use to optimize function.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
Participants diligently planned outings to enable feelings of safety and to maintain control over their health. Choices to alter their established routine following their SCI were made with careful consideration due to cognitive and physical effort needed.
Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
Taking back a little of what you have lost: the meaning of using an environmental control system (ECS) for people with high cervical spinal cord injury.
There were new pressures and responsibilities that needed to be accounted for such as the time taken and cost for self-care and maintenance of equipment.
Participants prioritized maintaining their health as further loss of abilities, even if temporary, had significant effects on their physical and mental health, and on their caregivers.
Perceptions of ability to exert choice and control were influenced by reflective processes where participants drew on their personal resources to find strength or made self-preserving decisions to maintain control over their emotions. For example, some participants initially felt disconnected from and did not like their bodies
but noticed a point in which their perception shifted. Participants referred to these moments as being crucial for choosing to turn toward hope and restore control through a readiness for action.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
; no longer experiencing a fracture between their physical body and their sense of self thus realizing that their self-worth was not linked to physique
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method.
[Quality of life improvement in people with spinal cord injury: the transition from rehabilitation hospital to the everyday life from users’ perspective] [Spanish].
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