Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs

Abstract

Purpose: The purpose of this study is to explore the needs of people living with spinal cord injury, receiving formal carer and hospital services.

Materials and methods: This exploratory qualitative study was undertaken with people living with spinal cord injury in metropolitan or regional Victoria. Participants were recruited through the Australian Quadriplegic Association. Twenty-two in-depth interviews were conducted between September and October 2015. Participants were purposely selected based on their age, gender, level of injury, and compensation status. A thematic analysis was undertaken using a framework approach.

Results and conclusions: With respect to hospitalization, the findings highlighted the need for improved access to spinal cord injury specialist care and greater personalization of care delivery for people with spinal cord injury. When receiving formal care services, participants reported the need for carers to be educated in preventing and managing secondary conditions, and for information about managing carers in their life and home. A more reliable and accessible supply of carers was also required to reduce the anxiety associated with an actual or potential absence of their assistance. To improve the independence and quality of care and life for people living with spinal cord injury, more responsive and individualized care is needed in the hospital, rehabilitation, and community settings.

Implications for rehabilitation

• Understanding the individualized needs of people living with spinal cord injury and their families with respect to carer management is necessary to provide tailored rehabilitation education and ensure appropriate community supports are in place.

• The development of individualized plans by rehabilitation health professionals for obtaining spinal cord injury specialist care post-discharge could reduce anxiety and improve safety and quality of care.

• Integrating peer support into rehabilitation processes could offer benefits in managing carer issues.

• Greater family involvement in the rehabilitation process and follow-up psychological support could assist with adjustment and quality of life post-discharge.

Keywords:

• Spinal cord injury
• readmission
• health and support services
• secondary conditions
• caregiver
• personal assistance
• attendant care

Acknowledgements

The authors would like to express our appreciation to the participants.

Disclosure statement

A. N. is part of the VSCS. A. N. was not involved in the collection of data or analysis, which was performed by S. B. and A. L.

Additional information

Funding

This project was funded by the Transport Accident Commission, through the Institute for Safety, Compensation and Recovery Research. B. G was supported by a Career Development Fellowship (GNT1048731), from the National Health and Medical Research Council (NHMRC) of Australia.