The circular paradox of including people with severe brain injuries and reduced decisional capacity in research: A feasibility study exploring randomized research, consent-based recruitment biases, and the resultant health inequities.
Background: People with severe brain injuries (PSBI) and reduced capacity to consent (CTC) frequently develop muscle contractures. Standard care includes prolonged stretch (PS) but there is limited condition-specific evidence from randomized controlled trials (RCTs). Purpose: Identify factors affect...
| Publicado en: | Physiotherapy Theory & Practice Vol. 40; no. 10; pp. 2196 - 2213 |
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| Autores principales: | , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Oct2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=180116174&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 180116174 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09593985 BCJ jtl: Physiotherapy Theory & Practice issn: 09593985 maglogo: Y pubinfo: dt: Oct2024 vid: 40 iid: 10 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 180116174 165102032 180116174 180116174 10.1080/09593985.2023.2236194 180116174 ppf: 2196 ppct: 17 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: The circular paradox of including people with severe brain injuries and reduced decisional capacity in research: A feasibility study exploring randomized research, consent-based recruitment biases, and the resultant health inequities. aug: au: Clark, Teresa Lewko, Agnieszka Calestani, Melania affil: Physiotherapy, Royal Hospital for Neurodisability, London, UK sug: subj: Brain Injuries Severity of Injury Randomized Controlled Trials Decision Making Competence (Legal) Research Subject Recruitment Consent Human Adult Middle Age Multimethod Studies Pilot Studies Focus Groups Interviews Thematic Analysis Safety Purposive Sample Scales Adult: 19-44 years Middle Aged: 45-64 years ab: Background: People with severe brain injuries (PSBI) and reduced capacity to consent (CTC) frequently develop muscle contractures. Standard care includes prolonged stretch (PS) but there is limited condition-specific evidence from randomized controlled trials (RCTs). Purpose: Identify factors affecting the inclusion of PSBI and reduced CTC in a PS RCT and methodologies more capable of generating condition-specific outcomes. Methods: Mixed-method feasibility studies, including a pilot RCT (PSBI, adults with reduced CTC) comparing PS treatments (serial casting and splinting) and focus groups/interviews with physiotherapists involved in PS treatment. Reflexive thematic analysis developed themes. Results: Two PSBI were included in the pilot RCT with no significant safety concerns or adverse effects. Twelve physiotherapists participated in two focus groups and two interviews. Four themes were identified: 1) complexity of contracture management; 2) burden of decision making; 3) lack of evidence and uncertainty; and 4) challenges to RCT acceptability and feasibility. Conclusions: Reduced CTC contributes to the exclusion of PSBI from experimental research, and a circular paradox where poor research inclusion contributes to generalized healthcare and "evidence-biased medicine." Due to the complexity of their condition, simply including PSBI in randomized research is unlikely to create meaningful health outcomes. Improving their care requires a paradigm shift toward pluralistic methods of knowledge generation. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Unknown language: English refInfo: holdings: @attributes: islocal: N |
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