Secondary health conditions experienced by people with spinal cord injury within community living: implications for a National Disability Insurance Scheme

Abstract

Background: Australia's National Disability Insurance Scheme (NDIS) provides supports for individuals, delivered through a personalised participant planning process, to influence choice and goal attainment.

Aim: This study aimed to use both quantitative and qualitative methods to examine the impact of secondary health conditions on the experiences of people with spinal cord injury (SCI) who have returned to community living, in the context of Australia's National Disability Strategy and recently launched NDIS. Exploration of lived experience of health conditions following SCI utilising this mixed methods approach may offer important insights for effective planning within an NDIS.

Methods: A cross-sectional survey using the Spinal Cord Injury Secondary Conditions Scale (SCISCS), demographic questionnaire and in-depth interview was undertaken with 33 people with SCI living in the community. Demographic and SCISCS data were reported using descriptive statistics. Interviews were audio-taped, transcribed and analysed thematically.

Results: Participants were on average 58.5 years of age and 20 years post-injury. Five key themes emerged relating to (i) spasm and pain; (ii) sexual dysfunction; (iii) pressure areas; (iv) fatigue; and (v) the impact of secondary health conditions on life role participation and choice of supports and equipment.

Conclusion: Secondary health conditions can significantly impact occupational participation following SCI. Appropriate intervention, including customised equipment and direct support, if delivered as part of an effective NDIS, may prevent or reduce the severity of these conditions and offer the potential to influence health and participation outcomes of people who have returned to community living.

Keywords: health promotion; mixed methods research; spinal cord injury.