The meaning of self-care in persons with cervical spinal cord injury in Japan: a qualitative study

Abstract

BackgroundProfessionals in Japan tend to regard the individual contexts of persons with spinal cord injury (SCI) as the cause of their passive participation in self-care activities or self-management. However, the meaning of self-care involves variables that interrelate with sociocultural factors. Thus, it is necessary to uncover its meaning in the perceptions of persons with cervical spinal cord injury (CSCI) in order not only to implement better rehabilitation but also to understand the sociocultural constraints that determine the injured person’s attitudes to self-care and long-term health outcomes.MethodsSemi-structured interviews with 29 CSCI participants from fourteen municipalities of Osaka, Hyogo, and Ehime prefectures were conducted. Participants contributed diverse perspectives on rehabilitation, lay-professional and family relationships, health promotion, and body conceptions. Interviews were recorded, transcribed and analyzed using the grounded theory approach to inter-relate categories and to develop theoretical constructions.ResultsFour main themes emerged from the data: rehabilitation for independence in ADLs; detachment from the body and self; embodiment; and self-management. From the participants’ point of view, rehabilitation programs in Japan aim at improving body functions for ADL performance, but provide little health education. These rehabilitation values might hinder some participants from developing self-esteem for their bodies. Moreover, socially-shaped family caregivers’ active engagement in the participants’ self-care allowed many participants to entirely rely on them for care. Through embodiment, participants found that self-care was not merely a means of independence in ADLs but also of self-management to enhance health and well-being, requiring collaborative relationships with caregivers.ConclusionPersonal factors such as low motivation for self-care might be in part a reflection of social expectations of dependence for persons with CSCI. However, the shift in the meaning of self-care from ADLs to self-management implies more active participation in health care needs, shaped through social exchanges. Not only personal factors but also sociocultural factors influence the injured person’s valuation of self-care. There is a need for further research to better understand sociocultural influences on illness behaviors among persons with CSCI, so that clinical and community practice can develop accordingly.

Exercising Choice and Control: A Qualitative Meta-synthesis of Perspectives of People With a Spinal Cord Injury

“…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 30,43,48,53 or potential retribution if they were not friendly 50 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" 41(p611) and because of their reliance on caregivers 28,43,48 they placed their needs secondary and did not complain.…”

“…Worry about being an imposition on others 30,43,48,53 or potential retribution if they were not friendly 50 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" 41(p611) and because of their reliance on caregivers 28,43,48 they placed their needs secondary and did not complain. Caregivers were sometimes overprotective 30,43,48 and gave or offered unnecessary assistance.…”

“…Some participants described their experience in institutional care as being at the "mercy of staff" 41(p611) and because of their reliance on caregivers 28,43,48 they placed their needs secondary and did not complain. Caregivers were sometimes overprotective 30,43,48 and gave or offered unnecessary assistance. 48,49 However, to ensure security, participants could also make a conscious choice to be passive and accepting.…”

“…To understand how individuals with an SCI define function, facilitators, and barriers to function and adaptations to support function. Ide-Okochi et al 43 29…”

“…48 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. 30,53 Some began to withdraw socially 43 finding it difficult "to see everyone at bum level" 48(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.…”