Experiences of persons with spinal cord injury, their family members, and health care providers during transitions in care in Alberta: a qualitative reflexive thematic analysis.

PURPOSE

People with Spinal cord injuries (SCI) experience multiple transitions during their healthcare journey. This qualitative study aims to understand experiences of people with SCI, and perceptions from family members, and some healthcare providers on the transitions through the healthcare system in Alberta, Canada.

METHODS

Using purposive sampling, 49 participants were interviewed, including 22 people with SCI and 27 stakeholders, including family members and providers, a community-based participatory research study was conducted. Data were analyzed using reflexive thematic inductive comparative analyses of transcripts along with interviewers' field notes.

RESULTS

We identified the following nine overarching themes identifying 9 key areas (1) communication; (2) compassion, (3) healthcare providers' empathy, and humility; (4) continuity of care; (5) adequate preparation for discharge; (6) availability and accessibility of resources in the community; (7) mental health supports; (8) peer support and support from community-based organizations; and (9) education and managing of healing expectations. Interpreting these themes allowed us to identify key areas of opportunity to improve the transitions of people living with SCI in Alberta.

CONCLUSIONS

Transitions in care after SCI is a complex phenomenon. In the absence of continuity of care across the healthcare services, people with SCI are susceptible to adverse health outcomes. Addressing the identified gaps within these transitions will improve their quality.