Long-term unmet needs after stroke: systematic review of evidence from survey studies

Chen, Ting; Zhang, Bo; Deng, Yan; Fan, Jingchun; Zhang, Liansheng; Song, Fujian

doi:10.1136/bmjopen-2018-028137

Cited by 87 publications

(99 citation statements)

References 33 publications

(53 reference statements)

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“…Rehabilitation and medical needs ranked next to social and recreational needs in our study’s participants. Unmet service needs have been reported amongst stroke survivors (Chen et al 2019 ). The need for information and more physiotherapy sessions was also highlighted by the participants.…”

Section: Discussionmentioning

confidence: 99%

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Olaleye

Zaki

Hamzat

2021

South African Journal of Physiotherapy

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Background Knowledge of the specific expectations of patients with neurological conditions (NCs) from rehabilitation helps in setting attainable goals. Such expectations may vary from situation to situation. There are no studies investigating rehabilitation expectations amongst individuals with NCs in Nigeria. Objectives The aim of our study was to explore the rehabilitation expectations of individuals with NCs. Method This convergent mixed-methods study comprised a cross-sectional survey of 105 individuals with NCs and two sessions of Focus Group Discussions (FGDS) amongst eight individuals with NCs. The modified Needs Assessment Questionnaire was used to assess rehabilitation needs as a proxy for rehabilitation expectations, whilst disability was assessed using the World Health Organization Disability Assessment Schedule 2.0. Quantitative data were summarised using descriptive statistics and analysed using inferential statistics at p < 0.05. Thematic analysis was conducted on the qualitative data. Results Sixty-one (58.1%) stroke survivors, 33 (31.4%) individuals with spinal cord injury (SCI) and 11 (10.5%) with traumatic brain injury (TBI) aged 46.48 ± 15.91 were surveyed. The need for social/recreational activity was the most expressed need (100%) amongst the participants. Mobility was reported as an important need constituting a barrier to enjoying life by 93 (88.6%) participants. Individuals with SCI expressed the greatest needs compared with the other two groups. Needs were significantly correlated with severity of disability ( p < 0.05). Four overarching themes (physical health, financial, healthcare services/rehabilitation and emotional/social) representing major areas of needs emerged from the FGD data. Conclusion Individuals with NCs in Nigeria have specified expectations of rehabilitation. Disability was a major driver of these expectations, irrespective of NC subtype. Clinical implications Rehabilitation programmes for individuals with NCs should target expressed needs or expectations of each patient cohort and minimise disabilities associated with these conditions.

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Section: Discussionmentioning

confidence: 99%

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Olaleye

Zaki

Hamzat

2021

South African Journal of Physiotherapy

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“…Hospital stroke teams do not routinely continue to follow up stroke survivors, handing over care to primary care and community teams normally within a year after the stroke although stroke survivors have changing needs at different times [7,21]. There is recognition that the longer-term needs of stroke patients are not well met [22]. This may be due to lack of identification of these needs by health care professionals [23], or lack of effective action once identified [7].…”

Section: Policy Implicationsmentioning

confidence: 99%

When is referral from primary care to specialist services appropriate for survivors of stroke? A modified RAND-appropriateness consensus study

et al. 2020

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Background: There is guidance in the United Kingdom about what long-term care stroke survivors should receive, but a lack of guidance about who should deliver it and where this care should take place. This is a key issue given the evidence that current needs are not well addressed. The purpose of this study was to explore when a referral from generalist to specialist services is appropriate in the long-term management of stroke survivors. Methods: A modified RAND-Appropriateness method was used to gain consensus from a range of stroke specialist and generalist clinicians. Ten panelists rated fictional patient scenarios based on long-term post-stroke needs. Round 1 was an online survey in which panelists rated the scenarios for a) need for referral to specialist care and b) if referral was deemed necessary, need for this to be specifically to a stroke specialist. Round 2 was a face-to-face meeting in which panelists were presented with aggregate scores from round 1, and invited to discuss and then re-rate the scenarios. Results: Seventeen scenarios comprising 69 referral decisions were discussed. Consensus on whether the patient needed to be referred to a specialist was achieved for 59 (86%) decisions. Of the 44 deemed needing referral to specialists, 18 were judged to need referral to a stroke-specialist and 14 to a different specialist. However, for 12 decisions there was no consensus about which specialist the patient should be referred to. For some scenarios (spasticity; incontinence; physical disability; communication; cognition), referral was deemed to be indicated regardless of severity, whereas indications for referral for topics such as risk factor management and pain depended on complexity and/or severity. Conclusions: There was broad agreement about when a stroke survivor requires referral to specialist care, but less agreement about destination of referral. Nevertheless, there was agreement that some of the longer-term issues facing stroke survivors are best addressed by stroke specialists, some by other specialists, and some by primary care. This has implications for models of longer-term stroke care, which need to reflect that optimal care requires access to, and better coordination between, both generalist and specialist healthcare.

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“…Existing syntheses of qualitative studies in stroke have focused either on the patient experience of rehabilitation, instead of unmet needs [ 20 , 21 ], or on the experience of care [ 22 , 23 , 24 ]. Few syntheses systematically reviewed the unmet need of stroke patients [ 25 , 26 ] (e.g., the identification of needs in the acute phase, rehabilitation phase, or long-term unmet needs), whereas they did not state the unmet needs in the community. To the best of our knowledge, no studies have summarized the literature on the perceived experiences of unmet needs of community-dwelling stroke people who do not live in institutions.…”

Section: Introductionmentioning

confidence: 99%

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

Guo

Zhang

Lin

et al. 2021

IJERPH

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The unmet needs perceived by community-dwelling stroke survivors may truly reflect the needs of patients, which is crucial for pleasant emotional experiences and a better quality of life for community-dwelling survivors not living in institutionalized organizations. The purpose of the study is to identify the scope of unmet needs from the perspectives of stroke patients in the community. A qualitative meta-synthesis was performed according to the Joanna Briggs Institute method. Six electronic databases were searched from inception to February 2020. A total of 24 articles were involved, providing data on 378 stroke survivors. Eight categories were derived from 63 findings, and then summarized into four synthesized findings based on the framework of ICF: (1) unmet needs regarding with the disease-related information; (2) unmet physical recovery and activity/participation needs; (3) unmet needs for social environmental resources; (4) unmet psycho-emotional support needs. We found the framework of ICF mostly complete, but unmet information needs still remain. The needs that are mainly unsatisfied include physical, psychosocial and informational, as well as the practical support from professional or environment resources. The ever-present unmet needs perceived by community-dwelling stroke survivors who do not live in institutions are discoverable and mitigable. Future studies should focus on quantifying unmet needs comprehensively derived from experiential domains, assessing the rationality of the unmet needs expressed by patients’ perspectives and developing flexible strategies for long-term and changing needs.

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Long-term unmet needs after stroke: systematic review of evidence from survey studies

Cited by 87 publications

References 33 publications

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

When is referral from primary care to specialist services appropriate for survivors of stroke? A modified RAND-appropriateness consensus study

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

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