title: [Establishing self-management for chronic spinal cord injury patients: a qualitative investigation].
abstract: OBJECTIVE
  Self-management is essential for individuals with chronic cervical spinal cord injury, but some cases of self-neglect have been reported. The objective of this study was to examine the establishment of self-management in order to help inform community care practice.
  
  
  METHODS
  This was a qualitative study applying a grounded theory approach with semi-structured home interviews. We interviewed 29 individuals with cervical spinal cord injuries (aged 26-77 years) who were members of each of the three branches of the nationwide self-help group, or the clients of a home-visit nursing care station. Qualitative analysis was implemented from a time transition perspective consisting of the faint awareness period, the seeking period, and the adaptation period. The analysis included the perceptions and methods of self-management.
  
  
  RESULTS
  The process of establishing self-management was abstracted into a core category of "continuous adaptation to minimize the extent to which the individual's life was disrupted and to allow them to continue to live within the community". This in turn consisted of seven categories. In the faint awareness period, subjects perceived that they "hardly recognized health maintenance needs", that they had difficulties in acknowledging the necessity of controlling physical conditions, and that they were dependent on caregivers. In the seeking period, they were "driven by handling uncontrollable changes" and they coped with those changes in their own way and sometimes did not consider it necessary to see a doctor. In this period, a process of "searching for the methods of being healthy somehow" begun and they started to understand the degree to which they could cope without medication, together with their own responsibilities, and searched for the best coping methods and acted on advice. In the adaptation period, individuals were "struggling to continue the established health methods"; "managing stress"; "prioritizing their own beliefs over medical regimens"; and "confidently modifying the established self-management methods". They employed self-monitoring, preventative measures for secondary difficulties, and stress management techniques. However, they also avoided medication through self-determination and they prioritized their established lifestyle over medically ideal behavior.
  
  
  CONCLUSIONS
  Subjects learned sustainable self-management methods through trial and error, although in each period of adaptation, they sometimes failed to acknowledge the necessity of health maintenance and medical care, and they coped with their health care needs in their own way. Future research is essential to develop self-management programs that include the patient's own perspectives, to teach health maintenance methods that enable patients to balance social participation and self-management, and to establish cooperative networks among professionals who support the patient's home care.
authors.affiliation: Graduate School of Nursing, School of Medicine, Yokohama City University.
authors.forename: Ayako
authors.initials: A
authors.lastname: Okochi
authors.forename: Etsuko
authors.initials: E
authors.lastname: Tadaka
mesh_terms: D000222:Adaptation, Physiological; D000328:Adult; D000368:Aged; D002908:Chronic Disease; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D012648:Self Care; D013119:Spinal Cord Injuries / Q000628:therapy*; D013315:Stress, Psychological