Experiences of 12 patients in the first 2 years following spinal cord injury: setting meaningful rehabilitation goals
- Correspondence to Thilo Kroll
Social Dimensions of Health Institute, University of Dundee, 11 Airlie Place, Dundee DD1 4HJ, UK;
Implications for practice and research
■ A prospective understanding of the variable rehabilitation needs of people with spinal cord injuries (SCIs) over time necessitates flexible, co-ordinated and interdisciplinary support from healthcare professionals over time.
■ Professional support should extend beyond functional recovery or re-training and should focus more on what is meaningful to the individual in terms of maximising social and societal participation.
Appropriate rehabilitative support is crucial in the weeks and months after the onset of SCI as medical and psychosocial complications are likely to occur.1 Hence, it is important that rehabilitation professionals engage in a bespoke, patient-centred goal setting process. The article by Angel et al explored experiences of people with SCI and how perceived professional care and support helps them ‘regain a meaningful life’. The study was carried out in Denmark in a rehabilitation unit to which patients were admitted as soon as the SCI and respiration stabilised.
Angel et al conducted a prospective qualitative, ‘phenomenological-hermeneutic study using a narrative approach’. Each of the 12 participants (6 females, 6 males) had been diagnosed with a traumatic SCI and was followed for 2 years. The six to seven interviews per participant lasted between 40 min and 2 h. These were audiorecorded and subsequently transcribed.
In addition, the authors carried out field observations (7–11 times per participant) that focused on patients' daily activities in hospital and at home. The narrative interviews sought to capture participants' experiences and stories in their own words and were in parts guided by the field observations. The textual data analysis was based on Ricoeur2 and involved cross-sectional and longitudinal comparisons.
The principal findings are that patients with SCI embark on a ‘fight’ to ‘regain a meaningful life’. This fight can take the form of three ‘patterns’ as follows: (1) an internal struggle to imagine a ‘meaningful future’, (2) a ‘fight’ with healthcare professionals about the goals and pathways to reach them and (3) disillusionment with health professionals or the shying away from ‘confrontation’ that leads to passively adopting professionally defined goals or internal withdrawal from the rehabilitation process.
Little prospective evidence exists on how SCI survivors cope with the complex challenges associated with their injuries over time. This study reflects a nascent interest in narrative research in its contribution to practice-based evidence in fields with social and clinical complexity.3
Although most SCI rehabilitation research is still very much focused on physical and psychological functioning,4 the WHO Classification on Functioning, Participation and Health5 broadens the scope towards participation outcomes that are meaningful to patients. Angel et al emphasise the importance of understanding the meaning of rehabilitation from the patient perspective. The emphasis on patient experience in healthcare development and quality assurance is increasingly recognised.6
At the centre of the article is the ‘fighting’ metaphor. A typology of ‘fighting types’ may, however, ignore the complexities associated with the biographical, relational and situational influences on the coping process.
In order to advance transferrable knowledge in the field, more attention should be given to sociological (eg, Bury's7 work on biographical disruption) and psychological concepts8 9 in the understanding of the rehabilitation experience. The integration of Angel et al's findings with these theoretical foundations is lacking at the moment.
Finally, rehabilitation experiences need to be viewed in the context of healthcare delivery and a societal value system, as length of stay, continuity of support and integration of inpatient and outpatient services may vary considerably between countries. This in turn may significantly affect the rehabilitation experiences and outcomes of SCI survivors.
Angel et al emphasise the importance of understanding the complex interactions of individual biographies, patient–professional relationships and available resources over time. This understanding necessitates flexible, adaptable processes and fluid, yet transparent, boundaries between professionally supported rehabilitation and independent living with an SCI.