PTOTQualitativeFrontiers in rehabilitation sciences2022

Empowerment, Communication, and Navigating Care: The Experience of Persons With Spinal Cord Injury From Acute Hospitalization to Inpatient Rehabilitation.

Jacqueline A Krysa, Marianne Pearl Gregorio, Kiran Pohar Manhas and 3 others

PMID 36188987

WHAT IT FOUND

Patients with spinal cord injury reported needing to advocate aggressively for their own care and education.

They found hospital staff often lacked empathy or specialized knowledge, leaving them unprepared for discharge and forcing them to rely on family and peers to navigate community resources.

Key findings

01Participants felt the need to self-empower amidst a system that deprived them of control, often having to actively seek out information and resources themselves.

02Poor communication, including a perceived lack of empathy or optimism from providers and exclusion from decision-making, negatively influenced participants' motivation and perceived readiness for discharge.

03Family members and peer support volunteers were critical for navigating community resources and financial supports, often filling gaps left by hospital staff who lacked local knowledge.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTs

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What it does not show

The study included only 10 participants, which limits the breadth of experiences captured. Eight of the ten participants were male, so the findings may not fully represent the experience of women with spinal cord injury. Participants were interviewed up to 10 years after their injury, which introduces the possibility of recall bias. Three participants received their initial acute care outside of the province, which may have influenced their perceptions of the local Alberta healthcare system. All interviews were conducted virtually or by phone due to pandemic restrictions, which may have affected the depth of connection or comfort during the interview.

Declared interests

The authors declared no commercial or financial conflicts of interest. Funding was provided by the Alberta Paraplegic Foundation, the Canadian Institutes for Health Research, and the University of Alberta.

The easy way to misread this

Do not interpret these findings as evidence that specific interventions improve clinical outcomes. This study describes patient perceptions and barriers to care, not the efficacy of treatments. It highlights where patients feel unsupported, but it does not prove that changing these behaviors will lead to better physical or functional recovery.

Read it on PubMed →