Experiences of Intimacy and Relationship Maintenance in Acute Spinal Cord Injury Rehabilitation: An Interpretative Phenomenological Analysis

Sustaining a spinal cord injury (SCI) has a profound impact upon the individual with the injury and their family members, particularly their partner. Little is known about the couple’s experience of injury impact and how this is experienced during acute, hospital-based, rehabilitation. This qualitative study aimed to explore the couple’s experience of intimacy and maintenance of relationships following a SCI within the newly implemented Transitionz Rehabilitation (TR) Programme at Burwood Spinal Unit (BSU). Five couples participated in semi-structured, in-depth, dyadic (joint) interviews. Couples were recruited from the TR programme and interviewed before discharge home. In each couple the man was the person with a SCI. Drawing on the principles of Interpretative Phenomenological Analysis (IPA) I depict the couples’ experiences in three themes, and one ‘contextual’ theme that describes the couple relationship in the dyadic interview. ‘Grief and loss’ encapsulates the mourning for personal and couple losses associated with injury. Guilt and obligation to the other are felt by both partners as they live with these losses. ‘Loss of autonomy’ describes the restrictive and paternalistic hospital environment that disempowers through a lack of cohesion and distrust in health professionals and problems with privacy and space. ‘Transitioning forward’ represents the current and future hope couples have for their lives ahead as they participate in the TR programme and prepare to leave the acute rehabilitation environment for home. Separate on-site accommodation units provided couples with a window of opportunity to reclaim some privacy, and transition coaches were valued mentors in the struggle to come to terms with the injury and its impact. Couples talked of a new-found closeness in their relationship that came from their efforts to communicate well. The ‘couple relationship’ is a complex interaction of ‘I’, ‘We’ and ‘He/she’. The couples discussed their different interpretations of intimacy, from sexual intimacy to the act of sharing a meal together, intimacy encapsulated the unique bond and connection they shared with each other. The participants were also positive about aspects of intimacy with their partner post the SCI, although feelings of grief were experienced relating to their loss of intimacy. The couple offer each other unrivalled support, and communication is the most important facilitator of relationship maintenance. Thus, health professionals without sufficient sensitivity to the importance of communicating with the ‘we’ (rather than just the person with a SCI), the need for time and space for couple communication, and the primacy of the spousal relationship can negatively affect the couples’ efforts to maintain their relationship in the rehabilitation environment. Further, the physical hospital environment inhibited the couple’s ability to fully engage with each other, and this was compounded by experiences of a lack of privacy and dignity arising from the way care was provided. The couples wanted to know more about the medical aspects of sex after a SCI, recognising that this expertise would be lost to them once they left the TR programme. Yet the environment was not conducive to exploring sexual expressions of intimacy. More work is needed to address persistent feelings of a loss of autonomy and to enhance coping with the grief and loss following a SCI