This study aimed to understand the meaning of self-management in traumatic SCI from the perspectives of individuals with traumatic SCI and their (mainly) spousal caregivers as well as acute care/trauma and rehabilitation health care (or clinical) managers. The meaning of self-management in SCI related to the two overarching themes of internal responsibility attribution and external responsibility attribution. Furthermore, a clear delineation in the meaning of self-management was noted in the traumatic SCI and caregiver participants (i.e., the SCI-caregiver dyad) versus the manager participants.
There is a paucity of research on responsibility related to disease management and where it does exist, it has been narrow in focus: rehabilitation after a hip fracture [23] and management of musculoskeletal pain [22]. Assuming responsibility is a key factor in the first stage of patient activation; the individual has to take responsibility before he/she can play an active part in managing disease [24]. Nevertheless, responsibility attribution among people with chronic illness has not been explored in detail and its influence on self-management has been rarely explored [21].
Meaning of self-management in traumatic spinal cord injury and caregiver participants
For individuals with traumatic SCI and their caregivers, the meaning of self-management in SCI was largely reflected their belief in internal responsibility attribution. The sub-theme of ownership of one’s own care/empowerment in care management was central to the understanding of proper self-management by the traumatic SCI and caregiver participants. It was also described by manager participants, but not to the same extent as it was in the SCI-caregiver dyads. It is argued that the other sub-themes of wellness awareness, monitoring for secondary complications, and independence-dependence conflict also reflect internal responsibility attribution as some of these sub-themes correspond with the findings on internal responsibility attribution in a recent qualitative study [21]. For example, Audulv and colleagues [21] determined that those individuals who attributed responsibility to internal factors (e.g., beliefs and attitudes that one is an active agent in his or her own life) had a multi-faceted self-management regimen including a wide range of self-management behaviors in order to facilitate physical and mental well-being. It was further determined among those individuals who had a multi-faceted self-management regimen that there was an alternating between reflexive and routine strategies. With a reflexive strategy, self-management is closely evaluated and new information is sought and incorporated with an individual’s own experiences. With a routine strategy, self-management becomes a course of daily habits and routines. Thus, the themes identified by Audulv and colleagues [21] as being associated with internal responsibility attribution correspond with the sub-themes identified in the current study including monitoring for secondary complications (i.e., multi-faceted self-management regimen), which also involved specific routines (i.e., routine strategies) and a rediscovery of themselves post-injury (i.e., reflexive strategies), as well as wellness awareness (i.e., multi-faceted self-management regimen in order to facilitate physical and mental well-being). Wellness awareness as a component of the meaning of self-management according to the SCI and caregiver participants will be further discussed below as it contrasts to the manager participants’ meaning of self-management comprising established chronic disease self-management programs.
The sub-theme of independence-dependence conflict (including striving for independence) emerged as a component of the meaning of self-management and was consistent with the overarching theme of internal responsibility attribution among the traumatic SCI and caregiver participants. This sub-theme of independence-dependence conflict also comprised the notion that in striving for independence, individuals with traumatic SCI risked further injury or had experienced additional injuries. Indeed, the theme of independence (specifically, regaining independence in ADLs) also emerged in the study by Ide-Okochi and colleagues [14] on the meaning of self-care in persons with cervical SCI in Japan. Indeed, maintaining independence has been identified as a key component in the definition of self-management and healthy aging in other studies on individuals with neurological conditions (e.g., multiple sclerosis, stroke) [25, 26].
Finally, the sub-theme of the importance of caregiver skill set was observed in both the SCI-caregiver dyads as well as the manager participants, and was the one sub-theme among the SCI-caregiver dyads that related to external responsibility attribution.
Meaning of self-management in acute care/trauma and rehabilitation managers
For the manager participants, the meaning of self-management was narrower than that perceived by the SCI/caregiver dyads and the overarching theme of internal responsibility attribution that was observed among the SCI-caregiver dyads was not as dominant in this group. The main sub-themes identified among the manager participants related to both internal and external responsibility attribution, which may reflect their belief in combined responsibility attribution in self-management. The sub-theme of directing someone else to provide your care was central to self-management in the manager participants. This theme relates to internal responsibility attribution as individuals with traumatic SCI were directing their own care and thus active agents in their own care and lives (i.e., rather than allowing others to determine their care). A few of the SCI-caregiver participants also related self-management to directing someone else to provide your care, consistent with the overarching theme of internal responsibility attribution observed in this group. In contrast to the current findings, Ide-Okochi and colleagues [14], identified the sub-theme of intended obedience, whereby SCI participants described family members as the ones who made decisions about daily regimens such as taking medications (i.e., versus the individual with SCI directing someone else to provide his or her care and/or joint decision making between the individual with SCI and the caregiver). In discussing this sub-theme, the authors noted cultural variations between Japan and America. In Japan, the family members of individuals with disabilities are expected to make important decisions instead of the patients themselves, while in America, individuals with even severe disabilities are encouraged to live independently. While caregivers play a significant role in the self-management of individuals with SCI [27], Ide-Okochi and colleagues [14] concluded that intended obedience (and decision making on the part of the family member alone) was not a suitable role for the individual with SCI. The sub-theme of the importance of caregiver skill set also comprised the meaning of self-management and was identified by both the manager and SCI-caregiver participants. Thus, despite the fact that individuals with SCI were directing their caregivers for their own self-management, they were dependent on the caregivers’ skills for this self-management, the latter reflecting external responsibility attribution. Audulv and colleagues [21] similarly determined that participants who attributed responsibility to external factors cited other people as critical for attaining success in self-management.
Manager participants reported that the meaning of self-management in SCI related to established chronic disease self-management programs, with some of the managers referencing the CDSMP. In the study by Audulv and colleagues [21], conventional self-management regimens (e.g., symptom control and management) were related to external responsibility attribution. Indeed, although the CDSMP includes several health behavior topics, the primary focus is on the daily control and management of disease [28]. In contrast, wellness interventions focus on maximizing health and quality of life [29]. It is argued that the manager participants’ reference to established or traditional chronic disease self-management programs versus the SCI and caregiver participants’ reference to wellness awareness speaks to the managers’ conventional notion of self-management in a SCI population. Furthermore, wellness/health promotion interventions are resources that allow the individual to choose behaviors to enhance and sustain quality of life within the context of living with a chronic disabling condition. Conversely, interventions primarily oriented toward controlling disease, symptoms, and risk factors have the chronic illness/disease perspective in the foreground, minimizing the wellness perspective and the associated element of patient choice [30]. Thus, the managers’ understanding of self-management in SCI as being associated with traditional chronic disease self-management programs is consistent with an external responsibility attribution, while the SCI and caregivers participants’ definition of self-management as comprising wellness awareness and the associated patient choice is consistent with an internal responsibility attribution. It should also be noted that the sub-theme of promoting health and well-being (health maintenance) was similarly noted by Ide-Okochi and colleagues [14]. However, the specific mechanisms needed to promote health and well-being or health maintenance were not included in this study, while in the current study, participants included lifestyle practices/changes including, good nutrition, vitamin supplementation, exercise, and relaxation as part of the meaning of self-management.
Finally, responsibility attribution may be more of a continuum from external to internal, rather than these defined groups. Future research may involve a quantitative examination of potential covariates or predictors to explain these attributions in self-management (e.g., for the development of programs that could be tailored to individual needs). Changes in responsibility attribution over time, particularly among the individuals with traumatic SCI themselves, would also be worthy of further study [21].
Limitations
The current study acknowledges some limitations. In terms of the recruitment procedure, it is likely that a selection bias operated in those participants who agreed to take part in the research – they may have been healthier than those individuals who chose not to participate. Additionally, all participants had to have a caregiver who was willing to participate. The majority of traumatic SCI participants in the current study were male, which is consistent with the epidemiology of population-based studies e.g., [31], with female caregivers. Future research should attempt to focus on the perspective of females with a traumatic SCI as well as the perspectives of male caregivers in order to increase the applicability of the study findings. Future research should also seek to explore the self-management options for those individuals in the earlier stages post-injury (i.e., less than 1 year post-injury) and/or confirm that a self-management program at this stage is an inappropriate goal, as suggested by Hirsche and colleagues [13]. Finally, it is also important to note that options other than self-management programs may be worth exploring to minimize the risk of secondary complications including informational support (e.g., SCI-U, SCI Canada), peer support (e.g., SCI Canada), and/or other training/treatment for specific secondary complications (e.g., coping effectiveness training) [32].
