Stroke survivors and caregivers are feeling abandoned by health services, a new systematic review of studies focused on stroke survivors’ and carers’ experiences of primary care and community healthcare services has found.
Researchers at University of Cambridge say that stroke survivors and caregivers are feeling so because they have become marginalised by services and do not have the knowledge or skills to re-engage. One of the best ways to alleviate this feeling is to improve active follow-up and information provision to patients and caregivers especially in the first year after stroke.
Primary care could play an important role in the care of stroke survivors and their caregivers, supporting access to community services and facilitating transfer back to specialist services when new problems emerge. It could also help provide training, and identify and address health needs of caregivers. However, the feeling of abandonment that people with stroke experience following hospital discharge suggests this role is not being fulfilled.
Researchers carried out a systematic review of qualitative evidence in the field and analysed 51 studies. Findings of their study have been published in the journal PLOS ONE. They found an unaddressed need for continued support in a quarter of studies. Survivors and caregivers felt frustrated and dissatisfied with a lack of proactive follow-up either from primary care, the hospital, or allied healthcare professionals. This led to feelings of dissatisfaction, uncertainty, that a stroke survivor was “forgotten and written off” and that their general practice did not care about them.
Lack of support for caregivers was reported in more than one in five studies (22%), even though they felt healthcare professionals assumed that they would provide the majority of care needed. They felt ill prepared and pressured to “become experts” in caring for stroke survivors. In addition, both survivors and caregivers felt emotional support was lacking, even though they are at risk of anxiety and depression.
Long waiting times for assessment and rehabilitation and little or no help from social services left survivors feeling “left in the lurch”. Caregivers felt that access to rehabilitation was not provided early enough, causing survivors to “go backwards”.