How unmet are unmet needs post-stroke? A policy analysis of the six-month review

Abstract

Background Stroke is the fourth largest cause of death in the UK and a leading cause of death and disability worldwide. Policy recommends reviewing patients at six-months post-stroke to identify unmet needs but lacks evidence of effectiveness. This study explored needs identified by patients, how they were addressed by the six-month review (6MR) and whether or not policy aspirations for the review were substantiated by the data. Methods A multiple case study design underpinned by critical realism. Data sources included interviews with 46 patients and 28 professionals across three sites in the South East Coast of England. Patients’ interviews coincided with their reviews of which twenty-nine were observed. Thematic analysis of interviews, observations and policy documents was carried out within and across sites. Results There were ‘hotspots’ in the care pathway where patients and carers felt particularly unsupported. Whilst these gaps exacerbated anxiety, they were neither universal nor ameliorated by review. Patients consistently identified unmet needs related to rehabilitation, information/education and support. Stroke nurse specialists focused on investigations, medication and liaising with general practitioners or consultants while the Stroke Association co-ordinator focused on sign-posting to other services and provision of generic information which not all respondents found helpful. The remit of review was more modest than that of policy aspirations. Conclusions The review rests on two causal assumptions: that identifying unmet need will lead to its amelioration; and that provision of information will lead to behaviour change and self-management. While there was some evidence to support the former, there was almost none for the latter. The 6MR would benefit from a patient-led approach to its timing and format; a consistent and individualised approach to stroke education and self-management that is embedded across the care pathway; and targeting reviews should be considered.

The Unmet Needs of Community-Dwelling Stroke Survivors: A Systematic Review of Qualitative Studies

“…Among all published journal articles identified finally, 9 studies covered mixed populations, most (6) of which combined patients and their caregivers [ 33 , 34 , 35 , 36 , 37 , 38 ]. Two studies consisted of four populations [ 15 , 18 ] (i.e., patients, caregivers, health professionals, and health care managers), 1 covered three types of participants [ 39 ] (i.e., nurses, physicians, and occupational therapies), 1 contained patients and professionals [ 15 ]. Importantly, we only focused on the data of stroke patients.…”

“…Stroke people expressed the need to engage in a variety of activities and to continue as much as possible to get involved in all the activities [ 15 , 44 , 49 , 52 ]. They tended to engage in activities that were consistent with their previous interests [ 44 ].…”

“…To some extent, they may not be able to do it as well as before, but they still want to change some aspects of their current involvement, e.g., to increase the frequency of meaningful physical and leisure activities [ 44 ], “I would like my gait pattern to become more natural to be able to perform previous activities without assistance…, I’d taken two [computer] courses to develop the skills to participate in new activities” [ 44 ]. Moreover, they struggled to maintain involvement in valued pre-stroke life roles in and outside the home [ 15 , 52 ]. “We need to be able to try and get back at it [work] as soon as we can” [ 15 ].…”

“…Existing studies explained unmet needs as a need of something or help from someone (which would help overcome some of the effects of stroke and resulting difficulties) that is not being met [ 12 , 13 ]. Numerous studies [ 14 , 15 , 16 , 17 ] delved into the unmet needs’ contents of stroke patients (e.g., unavailable preventive services, professional support and invention, emotional and information communion, as well as level of unmet needs). It is highly sophisticated and multifactorial.…”

“…Claude Vincent [ 18 ] interviewed four populations, i.e., older stroke people, caregivers, health professionals, and health care managers, highlighting the four populations reported with their special perspective for the unmet need of stroke patients. For instance, Abrahamson V [ 15 ] reported that stroke nurse specialists emphasized investigations, medication, and liaising with general practitioners or consultants, while the stroke association coordinator highlighted signposting to other services. Of note, some researchers [ 15 , 19 ] reported that clinicians may sometimes discover unmet needs; however, if the patient believes that further intervention will not alleviate the need, they will not find it, which means that the patient’s unmet need is irreplaceable and unique.…”