Evidence
Alert

Stroke survivors with vision impairments need personalised rehabilitation and greater support

People who survive a stroke but suffer loss of vision do not always receive the care they need. A group of patients in northwest England said the rehabilitation they received was not personalised. Some had met with apathy from health professionals.

Focus groups and interviews revealed that patients with loss of vision experience long-term emotional, physical, and socioeconomic difficulties after their stroke.

The research points to an urgent, unmet need for further care and support for this group of patients. Rehabilitation that is adapted for each individual, along with a greater level of support, could help their physical recovery. It could also ease their reintegration into society.

What’s the issue?

Each year, more than 100,000 people in the UK have a stroke. Most (60%) have some loss of sight as a result, according to the Impact of Visual Impairment after Stroke (IVIS) research team at the University of Liverpool. Sight loss can prevent people returning to work and returning to driving. It impairs quality of life and is linked to depression.

Despite the negative impact of vision impairment, not all stroke units in the UK offer specific help. Many stroke survivors have to contend with their visual difficulties alone.

The IVIS researchers wanted to explore health inequalities within this group and to identify how they could be better supported.

What’s new?

The lead researcher interviewed 13 stroke survivors and one spouse either individually or in focus groups.  All were from the northwest of England and all had some kind of visual impairment caused by their stroke.

The researcher asked participants about their experiences of accessing health services. They discussed their life before and after stroke.

The research team analysed the interview transcripts. The most important themes to emerge from the stroke survivors’ experience were:

  • physical changes, including loss of mobility heightened by new visual impairments. One patient said, “they tried me on a big wheeled one [wheelchair] but I could only go around in circles because I could only use one eye. I had to get one… with small wheels and I just drag myself along with my good leg…”
  • psychosocial changes, including anger, shame, social isolation, and loss of employment. One patient said, “my husband actually finished work to care for me… we didn’t have my job, but we didn’t have [husband’s] job either…we thought we were going to lose the house originally… I had an absolute crash, I just decided I didn’t want to live anymore.”
  • healthcare provision, including a lack of information and lack of support to deal with visual impairment. One patient said, “I would have liked a letter because I can give it to someone and they can read it out to me… because if I got a phone call, they [family] would say, ‘what did they say?’ and I’d say, ‘I don’t know’ because I’ve forgot.”

Many participants reported a complete lack of visual care. Those who had received care wanted a more personalised approach to rehabilitation.

Why is this important?

The findings highlight the negative and far-reaching impacts of visual impairment after stroke. These include social isolation, loss of employment, and loss of ability to drive. Participants experienced fear, shame, anger, and self-doubt as a result of their situation.

The findings reveal an urgent need for all stroke survivors with visual impairments to receive rehabilitation. The authors believe that stroke clinicians need more guidance to better support their patients. Striving for a patient-centred approach is vital.

What’s next?

The research team would like all stroke units to offer a vision service as a standard part of care. The study supports the idea that eye health specialists (orthoptists) should work on stroke wards.

Clinicians can use this research to better understand the wider issues in their patients’ lives. This may spark conversations, ensure appropriate advice is given, and increase onward referrals.

The researchers want to identify the type of information that help clinicians equip their patients for life after discharge. They are investigating whether people with other neurological conditions experience similar long-term issues and may also need more support.

You may be interested to read

The full paper: Hanna K, and others. A qualitative exploration of the sociology of poststroke visual impairments and the associated health inequalities. Brain Behav. 2020;10:e01738.

Resources for stroke survivors and clinicians, produced by the VISION research team at the University of Liverpool.

Open access paper about the prevalence of vision problems after stroke: Rowe F, and others. High incidence and prevalence of visual problems after acute stroke: An epidemiology study with implications for service delivery. PLoS ONE. 2019;14:e0213035.

Open access paper about home visits for stroke-related visual impairment: Hanna K and Rowe F. Orthoptic Home Visits for Stroke Survivors: Results from a UK Professional Practice Survey. British and Irish Orthoptic Journal. 2019;15:105–114.

Funding

This research was funded by the NIHR Collaboration for Leadership and Applied Health Research (North West Coast).

Commentaries

Study author

This method of data collection was vastly different to my previous quantitative work. It was an enlightening experience. I learned to be unafraid of “awkward” silences when interviewing. Many experiences can be difficult to vocalise, and people need time to express themselves. Patience is key.

We suspected that care provision was variable, with some stroke survivors reporting good vision care and others nothing. But the impact of living with vision impairments and other disabilities was huge for all stroke survivors. This finding was both surprising and upsetting. It highlights a need for more help for visually impaired stroke survivors in the longer-term, after their stroke. They need support to help them adjust to these new challenges and emotions.

Kerry Hanna, Post-doctoral Researcher and Lecturer in Orthoptics, University of Liverpool

Member of the public

One thing that comes as no surprise to me, is that once patients have been discharged, they are of little interest to either Social Services or the NHS. It is often only once discharged that problems hidden by circumstance become apparent. While in hospital, people don’t have the need or opportunity to self-care and manage their own lives, and only when discharged do the obstacles become visible. Yet accessing help, highlighting those problems, and getting support is like finding hen’s teeth. This problem should be discussed and reflected upon by key players.

The bottom line of this paper is that there is insufficient provision for the long-term needs of visually impaired stroke survivors. The provision that does exist is poorly funded, planned, provided, and supported.

We need more money and better training at all levels of primary, secondary, and tertiary care to redress these imbalances. Better communication needs to be agreed and adopted between the NHS, social services and third sector groups.

Jeremy Dearling, King’s Lynn, Norfolk

Conflicts of Interest

None declared.