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Patient-voice sources — stroke

Last curated: 2026-08-30

All PMIDs below were retrieved through live PubMed E-utilities on 2026-08-30. Web pages were fetched directly on that date. An annotation describes what a source can support and its principal limitation; it is not an endorsement.

A. Published qualitative syntheses and reviews

  1. Reed MC, Wood V, Harrington R, Paterson J. Developing stroke rehabilitation and community services: a meta-synthesis of qualitative literature. Disabil Rehabil. 2012;34:553–563. PMID 21985186. — Eighteen-paper synthesis; identity, close relationships and social environment as interacting determinants. Older evidence base; service context varies.
  2. Sarre S, Redlich C, Tinker A, Sadler E, Bhalla A, McKevitt C. A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience. Disabil Rehabil. 2014;36:716–726. PMID 23883420. — Forty studies; adjustment is nonlinear, embodied and structurally mediated. English-language peer-reviewed literature through 2011.
  3. Chen L, Xiao LD, Chamberlain D, Newman P. Enablers and barriers in hospital-to-home transitional care for stroke survivors and caregivers: a systematic review. J Clin Nurs. 2021;30:2786–2807. PMID 33872424. — Twenty-nine studies; partnership, discharge gaps and integrated long-term support.
  4. Guo Y, Liu Y. The unmet needs of community-dwelling stroke survivors: a systematic review of qualitative studies. Int J Environ Res Public Health. 2021;18:2140. PMID 33671734. — Twenty-four studies/378 survivors; information, recovery/participation, environment and psycho-emotional support.
  5. See Toh WXS, Lim WH, Ang SY, et al. Experiences of spousal and adult child caregivers of stroke survivors in transitional care: a qualitative systematic review. J Adv Nurs. 2022;78:3897–3929. PMID 35986588. — Nineteen papers; role change, barriers, preparation and support during the first year.
  6. Denham AMJ, Wynne O, Baker AL, et al. Long-term unmet needs of informal carers of stroke survivors at home: a systematic review. Disabil Rehabil. 2022;44:1–12. PMID 32393074. — Thirteen studies; education/training, self-care, access, emotional and relationship needs.
  7. Nuccio E, de los Reyes-Guzmán A, D'Amico A, et al. Needs and difficulties during return to work after a stroke: systematic review and meta-synthesis of qualitative studies. Disabil Rehabil. 2024;46:4901–4914. PMID 38018092. — Thirty-eight studies including survivors and caregivers; connects health, employment and social services.
  8. Gibson JME, Coupe J, Watkins CL. Medication-taking after stroke: a qualitative meta-synthesis of survivor, carer and professional perspectives. Fam Pract. 2020;37:4–14. PMID 31324915. — Twelve studies/412 participants; medication as multifaceted work underpinned by trust.
  9. Nicholson S, Sniehotta FF, van Wijck F, et al. A systematic review of perceived barriers and motivators to physical activity after stroke. Int J Stroke. 2013;8:357–364. PMID 22974010. — Six studies/174 survivors; transport/environment, health concerns and impairment versus social support and daily-task goals.
  10. Lin BL, Mei YX, Wang WN, et al. Unmet care needs of community-dwelling stroke survivors: a systematic review of quantitative studies. BMJ Open. 2021;11:e045560. PMID 33879490. — Thirty-two studies; median 67.20% with unmet need, but large tool-driven range.
  11. Chen T, Zhang B, Deng Y, Fan JC, Zhang L, Song F. Long-term unmet needs after stroke: systematic review of survey studies. BMJ Open. 2019;9:e028137. PMID 31110106. — Nineteen studies; heterogeneous prevalence and recurring information, transport, home-help and therapy gaps.
  12. Loh AZ, Tan JSY, Zhang MWB, Ho RCM. Global prevalence of anxiety and depressive symptoms among caregivers of stroke survivors. J Am Med Dir Assoc. 2017;18:111–116. PMID 27742585. — Twelve studies/1,756 caregivers; pooled depression/anxiety symptom prevalence with substantial heterogeneity.

B. Primary qualitative studies

  1. White JH, Gray KR, Magin P, et al. Exploring the experience of post-stroke fatigue in community-dwelling stroke survivors: a prospective qualitative study. Disabil Rehabil. 2012;34:1376–1384. PMID 22256799. — 122 interviews with 31 people over 12 months; disabling fatigue despite reasonable physical recovery.
  2. Carlsson H, Gard G, Brogårdh C. Upper-limb sensory impairments after stroke: self-reported experiences of daily life and rehabilitation. J Rehabil Med. 2018;50:45–51. PMID 29068038. — Fifteen interviews; sensory change, precision/effort and little specific sensory training.
  3. Clancy L, Povey R, Rodham K. “Living in a foreign country”: staff-patient communication in inpatient stroke settings for people with aphasia and supporters. Disabil Rehabil. 2020;42:324–334. PMID 30261762. — Six survivors, ten carers and six professionals; communication context, consistency and aphasia-friendly care.
  4. Musser B, Wilkinson J, Gilbert T, Bokhour BG. Changes in identity after aphasic stroke: implications for primary care. Int J Fam Med. 2015;2015:970345. PMID 25685553. — Forty-five interviews with 12 survivors over 18 months; identity and relationship change. Joint partner interviews can influence accounts.
  5. Lanyon L, Worrall L, Rose M, et al. Needs and perspectives of people with stroke-related communication disabilities when returning to vocational activity. Int J Lang Commun Disord. 2024;59:2655–2670. PMID 39180389. — Seven participants; rich workplace detail but small, intervention-linked sample.
  6. Martin RA, Swaine B, Pomey MP, et al. Early opportunities to explore occupational identity change: return-to-work experiences after stroke. J Rehabil Med. 2023;55:jrm00363. PMID 36748979. — Thirty-one participants aged 25–76; emphasizes early identity exploration and diverse needs.
  7. Norris M, Kilbride C, Mohagheghi A, et al. Acceptability and experience of a functional training programme in community-dwelling stroke survivors. BMJ Open. 2018;8:e022175. PMID 30049699. — Intervention-specific qualitative study; supports contextual fit, not comparative efficacy.

C. Supporting quantitative syntheses

  1. Cumming TB, Packer M, Kramer SF, English C. The prevalence of fatigue after stroke: a systematic review and meta-analysis. Int J Stroke. 2016;11:968–977. PMID 27703065. — Pooled 50% prevalence (95% CI 43%–57%), I²=94%; quantifies a theme but does not explain experience.
  2. Hackett ML, Pickles K. Part I: frequency of depression after stroke. Int J Stroke. 2014;9:1017–1025. PMID 25117911. — Sixty-one studies/25,488 participants; pooled 31%, definitions and timing vary.
  3. Banda KJ, Chu H, Kang XL, et al. Prevalence of dysphagia and risk of pneumonia and mortality in acute stroke patients: a meta-analysis. BMC Geriatr. 2022;22:420. PMID 35562660. — Quantifies swallowing burden and associated outcomes; not a patient-experience study.
  4. Makin SDJ, Turpin S, Dennis MS, Wardlaw JM. Cognitive impairment after lacunar stroke: systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2013;84:893–900. PMID 23457225. — Demonstrates cognitive burden after small infarcts; patient-voice implications are inferred cautiously.

D. Organization sites fetched successfully

Publisher / page URL HTTP What it can support
World Stroke Organization — homepage https://www.world-stroke.org/ 200 global advocacy, awareness, policy, research and World Stroke Campaign presence
SAFE — homepage https://www.safestroke.eu/ 200 European umbrella advocacy/research/rehabilitation presence
Different Strokes — homepage https://differentstrokes.co.uk/ 200 younger-stroke focus, peer/support groups, helpline, research and story hub link
Heart & Stroke Foundation — Stroke https://www.heartandstroke.ca/stroke 200 Canadian stroke information, caregiver/survivor, research and advocacy functions
Heart & Stroke Foundation — Stories https://www.heartandstroke.ca/women/stories 200 existence of public selected-story hub; no individual content used
Stroke Foundation Australia — homepage https://strokefoundation.org.au/ 200 prevention, recovery, research, advocacy and young-stroke content
Stroke Aotearoa New Zealand — homepage https://www.stroke.org.nz/ 200 survivor/loved-one support, advocacy and awareness
Singapore National Stroke Association — homepage https://snsa.org.sg/ 200 support groups, survivor/caregiver and aphasia-aware resources
Stroke Support Station — homepage https://s3.org.sg/ 200 rehabilitation, caregiver, aphasia, advocacy and research functions
Stroke Support Station — Stories & Impact https://s3.org.sg/resource-hub/?e-filter-7559a84-category=s3-stories 200 existence of public story/impact hub; aggregate genre only
Stroke Survivors Foundation — homepage https://strokesurvivors.org.za/ 200 South African peer/support groups, rehabilitation, caregiver, aphasia and work resources
Fundación Freno al ICTUS — homepage https://www.frenoalictus.org/ 200 Spanish-language information, research and inclusion focus
Associação Brasil AVC — homepage https://www.abavc.org.br/ 200 Portuguese-language survivor/emergency-awareness presence
Rede Brasil AVC — homepage https://redebrasilavc.org.br/ 200 Brazilian network and public awareness presence

All web access dates: 2026-08-30.

E. Fetch failures and excluded sources

Attempt Result Handling
American Stroke Association help/support HTTP 403 Cloudflare organization not used for claims in this build
Stroke Association UK homepage HTTP 403 not used
National Aphasia Association homepage HTTP 403 not used
Aphasia Recovery Connection homepage HTTP 403 not used
SAFE legacy domain DNS failure replaced with verified current SAFE domain
attempted India patient-organization domains DNS failure no Indian organization included
attempted legacy South African domains DNS failure not included
Different Strokes deep story URL HTTP 403 homepage link noted; stories not read
guessed Stroke Foundation Australia / South Africa story URLs HTTP 404 excluded

F. Search record

PubMed searches run live in this session included:

  1. stroke lived experience qualitative systematic review
  2. stroke survivor patient experience qualitative synthesis
  3. stroke caregiver experience qualitative systematic review
  4. aphasia patient experience communication healthcare qualitative stroke
  5. post stroke fatigue lived experience qualitative
  6. return to work after stroke qualitative experience
  7. young stroke lived experience qualitative
  8. stroke survivor unmet needs patient reported priorities
  9. stroke rehabilitation patient experience qualitative review
  10. stroke survivor identity qualitative meta synthesis
  11. peer support after stroke systematic review qualitative
  12. stroke caregiver burden qualitative meta synthesis
  13. aphasia healthcare communication patient experience systematic review

Coverage limits

  • Language/geography: PubMed searching was English-language in formulation; retrieved evidence is dominated by high-income settings. Organization coverage does not correct research-language bias.
  • Communication exclusion: people with severe aphasia, cognitive impairment or limited digital access are often absent from interview and survey samples.
  • Setting: community-dwelling survivors dominate unmet-needs research; institutionalized people and those without informal carers are underrepresented.
  • Stroke type: many studies pool ischemic and hemorrhagic stroke and do not report aSAH-specific experience.
  • Time: older syntheses may describe services before modern thrombectomy and early supported discharge, while identity/relationship findings may remain transferable.
  • Organization selection: stable websites are easier to verify. A fetch failure is a technical result, not evidence that an organization is inactive.
  • Public stories: only two story hubs were fetched; individual pages were not sampled. Story curation creates positive/negative selection and cannot estimate frequency.
  • No social-media sampling: no comments, closed groups, hashtags or private forums were accessed.
  • No prevalence from qualitative work: counts of themes are not population rates; quantitative companion estimates are clearly labeled.
  • Regional gaps: India, most of Africa, the Middle East, Central/East Asia, Latin America outside Brazil and Spain, and Indigenous communities need dedicated multilingual sweeps.