“You were lying in limbo and you knew nothing”: a thematic analysis of the information needs of spinal cord injured patients and family members in acute care

Abstract

Purpose To address the lack of research on the information needs of spinal cord injured (SCI) patients and family members in acute care, in order to inform the provision of appropriate information supports. Materials and methods Semi-structured interviews were conducted with seven traumatic SCI patients and six family members. Reflexive thematic analysis was used to analyse and interpret the data. Results Five themes were generated: (1) “You were lying in limbo and you knew nothing” describes how being situated in non-specialist acute care limited participants’ access to information; (2) “You’ll never walk again” is not enough describes the need for information about the effects of SCI and the management of secondary conditions; (3) “The delivery was awful” demonstrates the importance of information being explained clearly and empathically; (4) “It was going in one ear and out the other” highlights the need for ongoing conversations with healthcare professionals, as retaining information provided in the early stages post-injury is often difficult; and (5) “Hope” not “false hope” discusses the importance of giving patients and family members hope while simultaneously being realistic about potential recovery. Conclusions SCI patients and family members had significant unmet information needs in acute care. IMPLICATIONS FOR REHABILITATION SCI patients and family members had significant unmet information needs while in acute care. Being in non-specialist acute care significantly limited most participants’ access to information. During the acute phase of care, most patients and family members would like to know the patient’s recovery prognosis, the impact of SCI on the patient’s functional independence, how to manage secondary complications, and what to expect in rehabilitation. As patients and family members often had difficulty absorbing information in the early stages post-injury, information should be continuously repeated, reinforced and clarified. HCPs should promote realistic hope for SCI patients and family members even in the absence of neurological recovery, by focusing on what the patient is still capable of while being honest about their prognosis.