Learning to direct one’s care: barriers and facilitators reported by people with tetraplegia

Study design

Qualitative analysis of focus group data.

Objective

Identifying barriers to and facilitators of learning to direct one’s own care as a person with tetraplegia due to spinal cord injury (SCI).

Setting

Community, in New Jersey and Georgia, USA.

Methods

Three focus groups of veterans and civilians with SCI, involving 26 people with chronic (≥1 year) tetraplegia due to SCI who provided direction to caregivers on a daily basis. Content analysis was used to identify barriers and facilitators.

Results

Challenges to learning to direct one’s care included: (1) lack of acceptance of lasting effects of SCI; (2) not yet understanding one’s body post-SCI; (3) embarrassment; (4) being overwhelmed with information; (5) differences between the inpatient rehabilitation setting and the “real world”; (6) lack of capable and willing assistants; and (7) hesitance to criticize caregivers. Factors that helped participants become successful directors of care included: (1) experience living with SCI; (2) being observant; (3) communicating effectively; (4) developing confidence to advocate for one’s own needs; (5) learning when to “let go” and when to speak up; and (6) learning from peers.

Conclusions

Direction of care is a complex skill that is developed over time, and requires awareness of one’s needs and preferences, self-confidence, and strong communication skills. Rehabilitation clinicians’ efforts to prepare people with SCI to direct their own care effectively should cultivate awareness of one’s body, identify strategies for communicating successfully with caregivers, and provide opportunities for practice of care direction skills and discussion with experienced peers.