Dr Giles Yeates
Consultant Clinical Neuropsychologist, Rippling Minds www.ripplingminds.com
Centre for Movement, Occupational and Rehabilitation Sciences (MOReS), Oxford Brookes University
Chair, Thames Valley Acquired Brain Injury Network
The current trend in stroke rehabilitation is early intervention, with intensive input in the early period of time post-stroke. In the UK, as in many other countries, there is an early supported discharge model to intervention at the survivor’s home, which is commonly concluded within 6 weeks. The focus is on the survivor, with significant others such as family viewed as collaborators/resources in the survivor’s rehabilitation. These 6 weeks often mark the conclusion of the main bulk of stroke service input. Any subsequent needs that are identified beyond this 6 week period commonly necessitate a referral to a community acquired brain injury or pan-neurological condition community team, if one exists locally.
This tapering off, of service input over a brief period of time, stands can be juxtaposed with evidence of increasing and diversifying needs for stroke survivors and relatives in the weeks, months and years post-stroke. Evidence now attests to the value of longer-term physiotherapy intervention for stroke survivors (e.g., Mawase et al., 2020). When one looks at psychosocial needs there is a picture of increasing and broadening need over time: psychological distress for stroke survivors and their relatives/significant others, relationship strain and breakdown, and social isolation for both survivors and their immediate family (Haun, Rittman & Sberna, 2008; Yeates & Salas, 2019). These needs have been shown to be particularly prevalent from 6 months to 5 post-injury (Lincoln et al., 2013), often when stroke service input has long since concluded. We have then, a common scenario of isolated survivors and families dealing with mental health difficulties and toxic relationship conditions with no immediate health service support. Recent research on social cognition difficulties in stroke survivors has highlighted enduring difficulties with empathy-related abilities following different types/locations of strokes, which will likely be ever-present vulnerability factors for increasing relationship strain, emotional distress for those concerned, and the failure of relationships to provide a containing, supportive role (Hewetson, Cornwell & Shum, 2021; Yeates & Salas, 2019). Third sector groups are often the visible point of contact at this point in time, and can struggle with the degree and scope of such needs.
The dominant stroke health service model of a tapering inverted triangle of provision over time, finding its apex long before the evolving psychosocial need broadens out (see diagram).
How has this mismatch evolved to be the case? The traumatic brain injury literature has long shown the prevalence of such difficulties over enduring periods of time post-injury (e.g., Brooks et al., 1987), and transferability of this literature to stroke service planning is long overdue. Planning of stroke service pathways is very medicalised relative to that of traumatic brain injury, hence the miopic focus on services concluding at the point of medical stability and functional (supported) independence of the survivor.
Relationships and long-term psychological vulnerability remain in the shadows, unseen within the beam of the medical torch. Local service funding and decision-making across the UK is reflected by the still under-provision of psychology in stroke services relative to corresponding traumatic brain injury/acquired brain injury (ABI) services, despite the recommendations for psychology as a core stroke rehab element in national policy (Royal College of Physicians, 2016). Furthermore, clinical neuropsychology, where present in stroke services, does not routinely offer couples and family relationship support as part of its core raison d’etre (Bowen, Yeates & Palmer, 2010).
This brief appraisal of the situation is pertinent up to March 2020, and of course in the last year the COVID 19 pandemic has serviced to created further restrictions and inequalities in stroke service provision/access at all points in the pathway. Social distancing has restricted the ability of professionals to meet face to face with survivors and families as they negotiate the aforementioned needs and challenges in the years post-stroke. In contrast, online resources (information resources, webinars, blogs, conversation, and therapy provision) have emerged within this vacuum, with the potential for a wider array of access for survivors across the country and indeed internationally.
As it is less common for rehabilitation professionals who have skills in supporting the unique post-stroke/ABI emotional and relationship needs to be operating within the third sector (charities, etc.,), important initiatives can be forged with mental health and relationship charities to collaborate in offering support opportunities (this would require effective understanding of the unique impact of stroke on mental health and relationships by non-stroke speciality organisations however). At the same time, efforts need to be made to present the evidence-base for increasing psychosocial needs as a core dimension of post-stroke life, and the rationale for extended stroke service models and cross-sector pathways to be present, relevant and responsive during the manifestation of such challenges. Time to widen the torch beam to take in everything that has remained hitherto unseen.
References:
Bowen, C., Yeates, G.N. & Palmer, S. (2010). A Relational Approach to Rehabilitation: Thinking about Relationships after Brain Injury. London: Karnac.
Brooks, N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1987). The effects of severe head injury on patient and relative within seven years of injury. The Journal of Head Trauma Rehabilitation.
Royal College of Physicians. (2016). National Clinical Guideline for Stroke (5th Edition).
Haun, J., Rittman, M., & Sberna, M. (2008). The continuum of connectedness and social isolation during post stroke recovery. Journal of Aging Studies, 22(1), 54-64.
Hewetson, R., Cornwell, P., & Shum, D. H. (2021). Relationship and social network change in people with impaired social cognition post right hemisphere stroke. American Journal of Speech-Language Pathology, 1-12.
Lincoln, N. B., Brinkmann, N., Cunningham, S., Dejaeger, E., De Weerdt, W., Jenni, W., ... & De Wit, L. (2013). Anxiety and depression after stroke: a 5 year follow-up. Disability and rehabilitation, 35(2), 140-145.
Mawase, F., Cherry-Allen, K., Xu, J., Anaya, M., Uehara, S., & Celnik, P. (2020). Pushing the Rehabilitation Boundaries: Hand Motor Impairment Can Be Reduced in Chronic Stroke. Neurorehabilitation and neural repair, 34(8), 733-745.
Yeates, G.N. & Salas, C. E. (in press). Relational neuropsycholoanalysis. In C.E. Salas, O.H.Turnbull & M.Solms (eds). Clinical Studies in Neuropsychoanalysis, Revisited. Oxford: Routledge.