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

Design/approach

The present study took a descriptive qualitative approach using telephone interviews. This approach was employed as there is a paucity of research on self-management in individuals with traumatic SCI as well as their caregivers and the qualitative descriptive approach is well-accepted for researching topics about which little is known and yielding practical answers of relevance to policy makers and health care practitioners [15, 16]. Given the potentially important role that caregivers have in the self-management of individuals with SCI, as outlined above, individuals with traumatic SCI and their caregivers (“the SCI-caregiver dyad”) were included. Health care (or clinical) managers from adult acute care/trauma and rehabilitation centres were included in order to triangulate the findings from a health care professional and/or health system perspective (i.e., presumably, the managers would have both clinical and health system knowledge related to individuals with SCI and their families). Given the geographic diversity as well as the potential accessibility limitations of the study participants, telephone interviews were conducted. Using this approach, it is assumed that the current findings could be used to develop a tailored self-management program for individuals with traumatic SCI. Research ethics approval was obtained from the University of Toronto (Protocol Reference #26429). All participants provided informed consent prior to the interview.

Recruitment

Community-based (i.e., non-hospital based) individuals with traumatic SCI were recruited via 1) an online advertisement posted on the SCI Canada-Ontario web site; 2) a print advertisement included in the SCI Canada-Ontario magazine “Outspoken”; 3) postings and direct personal interactions with Regional Services Coordinators from various SCI Canada-Ontario branches; and, 4) a community exercise rehabilitation program at McMaster University in Hamilton, Ontario (“MacWheelers”). Purposive sampling was used to identify and subsequently recruit study participants [17]. Some of the criteria for purposeful sampling included participants’ urban and rural status. Individuals with traumatic SCI who were interested in the study contacted the principal investigator by telephone or email to inquire about the study. Eligible participants included individuals who were 1) 18 years of age or older; 2) at least 12 months since injury; 3) fluent in English; 4) had experienced a traumatic SCI (e.g., a fall, motor vehicle accident, sporting accident, etc.); and, 5) who had a formal or informal caregiver who was willing to participate. It should be noted that the selection of a minimum of 12 months since injury was based on the findings of Hirsche and colleagues [13] who found that participation in the Stanford CDSMP less than one year after SCI may not be appropriate (i.e., readiness for information). Caregivers/family members were recruited via the individuals with traumatic SCI and were identified as the individual’s primary caregiver. Individuals with traumatic SCI and their family member/caregiver were interviewed separately to mitigate potential power imbalances, which would influence the experiences they would be willing to share. The contact information of managers from acute care/trauma and rehabilitation centres across Ontario that are recognized for treating individuals with SCI was identified via Internet searches. Managers were subsequently contacted by telephone, informed of the study, and asked whether or not they wished to be interviewed. Participants were recruited between September 2011 and May 2012. Recruitment ceased as the study approached the point of data saturation, which is the point when successive interviews become repetitive and no new responses or themes emerged [18].

Data collection

Data analysis

To facilitate the organization and analysis of the qualitative data, reflective notes from the interviews, as well as the transcripts were entered into NVivo 9 [19]. Analysis was conducted using inductive thematic analysis as described by Braun and Clark [20] to understand the meaning of self-management in traumatic SCI. Following verification of the accuracy of the transcripts by the interviewer, two researchers (FW, SJ) other than the principal investigator read a sample of the transcripts to become familiar with the data. The interview transcripts were initially coded manually by the principal investigator, giving full attention to all data. Following this, the codes were clustered into groups that shared similar meanings. At this point, three of the researchers (SM, FW, SJ) met to discuss the coding of a sample of the transcripts as well as the data assigned to the codes and themes/sub-themes. New themes and sub-themes were also discussed. Together, the researchers explored various thematic maps until consensus was reached.

Description of participants

Overview of themes

In the current study, the meaning of self-management related to two overarching themes of internal responsibility attribution and external responsibility attribution (see Table 3). Responsibility attribution implies underlying and unexplored assumptions about who has responsibility and who assumes responsibility for self-management and health status. Responsibility is defined as taking on obligations to act in order to attain desired outcomes [21]. It is suggested that responsibility for disease management is attributed to different sources: some individuals assume responsibility (internal responsibility attribution) while others refer it to third parties such as employers, health care providers, or family members (external responsibility attribution) [22, 23]. Specifically, the sub-themes of wellness awareness, monitoring for secondary complications, independence-dependence conflict, directing someone else to provide your care, and ownership of your own care/empowerment in managing your own care comprised internal responsibility attribution. The sub-themes of established chronic disease self-management programs and the importance of caregiver skill set comprised 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 (Fig. 1).

Theme	Sub-themes
Internal responsibility attribution	Wellness awareness
	Monitoring for secondary complications
	Independence-dependence conflict
	Directing someone else to provide your care
	Ownership of your own care/empowerment in managing your own care
External responsibility attribution	Established chronic disease self-management programs
	Importance of caregiver skill set

Internal responsibility attribution

External responsibility attribution

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].