Design for the Illiterate: A Scoping Review of Tools for Improving the Health Literacy of Electronic Health Resources

Barclay, Paul; Bowers, Clint A.

doi:10.1177/1541931213601620

Cited by 8 publications

(4 citation statements)

References 41 publications

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“…It is therefore highly important to adapt information to cultural contexts, local languages, and low-literate populations. Specific tools such as audio video tools or visual aids have successfully been used to communicate health information ( Barclay & Bowers, 2017 ).…”

Section: Discussionmentioning

confidence: 99%

Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco

Jonge

Boutjdir

Korchi

et al. 2023

Autism

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Understanding caregivers’ needs is crucial for service planning and empowering caregivers around the world. Although research on autism from Arab countries is emerging, many countries are still unrepresented. Moreover, within-country disparities are understudied. This study investigated differences in needs, service use, and satisfaction between urban or rural living caregivers of autistic children in Morocco. The “Andersen Behavioral Model of Health Services Use” served as a conceptual framework to investigate factors associated with receiving intervention and service satisfaction. Results from a survey among 131 Moroccan caregivers of autistic children revealed similarities and differences in urban and rural living caregivers’ challenges and needs. Children from urban communities had 12 times higher odds of receiving intervention despite similar age and verbal ability. Significantly, fewer children from rural communities attended school as compared with urban communities. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to reflect regional needs, resources, and practices. Addressing enabling factors such as costs, information barriers, or stigma may help reduce both global and within-country disparities in autism care. Lay Abstract It is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers’ challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care.

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Section: Discussionmentioning

confidence: 99%

Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco

Jonge

Boutjdir

Korchi

et al. 2023

Autism

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“…Digital DAs allow integration of videos to reach lower-literacy surrogates. 40,41 We are currently converting our DA into a digital DA for future use. We did not track how many surrogates required reminders by research staff to complete the worksheet and did not audio-record the clinician-family meetings, limiting us from further exploring how well the DA content was directly integrated into family meetings.…”

Section: Discussionmentioning

confidence: 99%

Pilot Randomized Clinical Trial of a Goals-of-Care Decision Aid for Surrogates of Patients With Severe Acute Brain Injury

et al. 2022

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Background and Objectives:Breakdowns in clinician-family communication in neurologic intensive care units (neuroICUs) are common, particularly for goals-of-care decisions to continue or withdraw life-sustaining treatments while considering long-term prognoses. Shared decision-making interventions (decision aids [DAs]) may prevent this problem and increase patient-centered care, yet none are currently available. We assessed the feasibility, acceptability, and perceived usefulness of a DA for goals-of-care communication with surrogate decision-makers for critically ill severe acute brain injury (SABI) patients after hemispheric acute ischemic stroke, intracerebral hemorrhage, or traumatic brain injury.Methods:We conducted a parallel-arm, unblinded, patient-level randomized, controlled pilot trial at two tertiary-care U.S. neuroICUs and randomized surrogate participants 1:1 to a tailored paper-based DA provided to surrogates prior to clinician-family goals-of-care meetings or usual care (no intervention prior to clinician-family meetings). The primary outcomes were feasibility of deploying the DA (recruitment, participation, retention), acceptability, and perceived usefulness of the DA among surrogates. Exploratory outcomes included outcome of surrogate goals-of-care decision, code-status changes during admission, patients’ 3-month functional outcome, and surrogates’ 3-month validated psychological outcomes.Results:We approached 83 surrogates of 58 patients and enrolled 66 surrogates of 41 patients (80% consent rate). Of 66 surrogates, 45 remained in the study at 3 months (68% retention). Of the 33 surrogates randomized to intervention, 27 were able to receive the DA, and 25 subsequently read the DA (93% participation). 82% rated the DA’s acceptability as good or excellent (median Acceptability score 2 [IQR 2;3]); 96% found it useful for goals-of-care decision-making. In the DA group, there was a trend towards fewer comfort-care decisions (27% vs. 56%, p=0.1) and fewer code-status changes (no change, 73% vs. 44%, p=0.02). At 3 months, fewer patients in the DA group had died (33% vs. 69%, p=0.05; median GOS 3 vs.1, p=0.05). Regardless of intervention, 3-month psychological outcomes were significantly worse among surrogates who had chosen continuation-of-care.Discussion:A goals-of-care DA to support ICU shared decision-making for patients with SABI is feasible to deploy and well-perceived by surrogates. A larger trial is feasible to conduct, although surrogates who select continuation-of-care deserve additional psychosocial support.Clinical Trials registration:Clinicaltrials.gov NCT03833375Classification of Evidence:This study provides Class IV evidence that the use of a DA explaining the goals-of-care decision and the treatment options is acceptable and useful to surrogates of incapacitated critically ill patients with ischemic stroke, intracerebral hemorrhage, or traumatic brain injury.

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“…Generally, a lower grade level for readability results in a more approachable and understandable online environment which is more conducive to engaging in and attaining knowledge. This is an important consideration for mental health consumers given that the experience of mental illness often interrupts people's participation in education (Esch et al, 2014), with improved readability scores facilitating independence, agency, empowerment and equity in accessing important information (Barclay & Bowers, 2017).…”

Section: Discussionmentioning

confidence: 99%

Help or hinder? An assessment of the accessibility, usability, reliability and readability of disability funding website information for Australian mental health consumers

Visser

Slattery

Stewart

2020

Health Soc Care Community

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This study aimed to assess the accessibility, usability, reliability and readability of those websites most likely encountered by Australian mental health consumers when using the internet to find information regarding the National Disability Insurance Scheme (NDIS). Websites were systematically identified with 127 deemed relevant for assessment in 2018. The LIDA instrument, the Simple Measure of Gobbledygook and Flesch-Kincaid Grade Level were used to evaluate the quality of information provided to mental health consumers. The study identified mediocre results for the accessibility, usability, reliability and readability of websites as they pertain to the needs of mental health consumers. Furthermore, it was identified that mental health support websites did not provide a more appropriate online experience for mental health consumers than general information websites, despite their focus on this demographic. These findings suggest a lack of understanding regarding the needs of mental health consumers and their experience of the online environment, which may in turn affect their access to information, agency and, ultimately, their uptake of the NDIS. The establishment of guidelines around enhancements to the online environment for mental health consumers would provide an experience that instils confidence, returns dignity and aids this group in realising their personal recovery journey.

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Design for the Illiterate: A Scoping Review of Tools for Improving the Health Literacy of Electronic Health Resources

Cited by 8 publications

References 41 publications

Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco

Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco

Pilot Randomized Clinical Trial of a Goals-of-Care Decision Aid for Surrogates of Patients With Severe Acute Brain Injury

Help or hinder? An assessment of the accessibility, usability, reliability and readability of disability funding website information for Australian mental health consumers

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