Informed consent for blood tests in people with a learning disability

Goldsmith, Lesley; Woodward, Val; Jackson, Leigh; Skirton, Heather

doi:10.1111/jan.12057

Cited by 14 publications

(29 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Nineteen articles, published between 2004 and 2017, were included in this group (Table 14). Six of these studies dealt with GP services, 75,79,82,83,91 four dealt with a range of primary services, 74,77,78,84 three dealt with palliative or end-of-life care service, 86,88,90 two dealt with sexual health services, 81,85 two dealt with diabetes services, 73,89 one dealt with dental services 80 and one study dealt with non-specific cancers in this population. 87 The majority of these studies had a qualitative design, [73][74][75][76][77]80,82,83,85,87,89,90 a few had a cross-sectional study design 78,79,81,84,85,88,91 and one was a case study.…”

Section: Interaction During a Consultationmentioning

confidence: 99%

“…Seven papers 74,75,[78][79][80][81]83 discussed the interpersonal skills that were needed during a consultation with someone with ID. People with ID wanted to be treated with dignity and respect 74,78,80 and they wanted to feel that they could trust the person they were talking to.…”

Section: Consultation Skillsmentioning

confidence: 99%

“…People with ID valued clear, verbal information tailored to their cognitive abilities, which included breaking explanations down into simple elements and using short sentences and simple, jargon-free vocabulary to explain concrete terms. 75,78…”

Section: Consultation Skillsmentioning

confidence: 99%

“…Eight papers [73][74][75]80,81,83,89,91 discussed the provision and use of accessible information, tailored to individual abilities, to support verbal communication. In their study of practitioners supporting people with ID who had diabetes, Brown et al 73 found that some practitioners made information about diabetes accessible by using 'Talking Mats' (Talking Mats Ltd, Stirling, UK), easy-read materials, and pictures and symbols, whereas others were not aware that these resources were available.…”

Section: Accessible Informationmentioning

confidence: 99%

“…89 Using accessible information to support verbal communication, including pictures and symbols for those who could not read, was particularly important when information was needed to make a decision about whether or not to give consent, for example for a blood test. 75…”

Section: Accessible Informationmentioning

confidence: 99%

See 4 more Smart Citations

Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review

Cantrell

Croot

Johnson

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

Background In 2015, approximately 2.16% of adults were recorded as having intellectual disabilities. UK government policy is that adults with intellectual disabilities should access mainstream health services. However, people with intellectual disabilities experience challenges when accessing primary and community health services that can lead to inequalities and shorter life expectancy. Objectives To map and review the evidence on access to primary and community health-care services for adults with intellectual disabilities and their carers. To identify influencing factors for gaining access to primary and community health-care services. To determine which actions, interventions or models of service provision improve entry access to these services for people with intellectual disabilities and their carers. Finally, to identify the gaps in evidence and provide implications for health care and recommendations for research. Data sources MEDLINE, The Cochrane Library, Web of Science, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Applied Social Sciences Index and Abstracts (ASSIA) and Education Resources Information Center (ERIC) were searched from 2002 to 2018. Review methods The mapping review methodology included an extensive literature search, article selection and data extraction of relevant abstracts. Findings from the mapping review informed the scope of the targeted systematic review. Methodology for the targeted systematic review included an extensive literature search informed by the mapping review, article selection, data extraction, quality appraisal and narrative synthesis. Results The mapping review included 413 studies with data extraction completed on abstracts. The targeted systematic review synthesised the evidence from 80 studies reported in 82 publications. During the review process, the team identified three key points at which people with intellectual disabilities potentially interacted with primary and community health-care services: identifying needs, accessing services and interaction during a consultation. In addition, there were a number of papers about interventions or innovations to improve access. Evidence from the studies was synthesised within the four clusters. Influencing factors were identified: staff knowledge/skills, joint working with learning disability services, service delivery model, uptake, appointment making, carer/support role, relationship with staff, time, accessible information and communication. The influencing factors were cross-cutting through the literature, with certain factors having more importance in certain clusters. Limitations The main limitation was the weak evidence base. The studies generally had small samples, had study designs that were open to potential biases and measured only short-term outcomes. Conclusions Health checks were found to help identify health needs and improve the care of long-term conditions. Important factors for accessing health services for adults with intellectual disabilities were consistency of care and support, staff training, communication skills and time to communicate, and provision of accessible information. Health professionals need to ensure that there is joint working between different services, clear communication and accurate record-keeping. Future research questions centre on the need to develop and value creative study designs capable of addressing the complex issues identified in the findings of the review for this complex population. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 5. See the NIHR Journals Library website for further project information.

show abstract

Section: Interaction During a Consultationmentioning

confidence: 99%

Section: Consultation Skillsmentioning

confidence: 99%

Section: Consultation Skillsmentioning

confidence: 99%

Section: Accessible Informationmentioning

confidence: 99%

Section: Accessible Informationmentioning

confidence: 99%

See 3 more Smart Citations

Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review

Cantrell

Croot

Johnson

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

Pre‐genetics clinic resource evaluation for adults with intellectual disability: The pre‐genetics clinic aid

Kotwal

Fleming

Barlow‐Stewart

et al. 2020

Journal of Genetic Counseling

View full text Add to dashboard Cite

People with intellectual disability (PWID) consistently identify the importance of health service information that is accessible and relevant. Resources tailored to the information and support needs of PWID can facilitate inclusivity in their health care (including access to genomic medicine) and improve healthcare outcomes. Despite the fact that PWID are commonly referred to genetics services, there is a lack of appropriate resources to help them prepare for their appointments. We therefore aimed to evaluate the feasibility and acceptability of a booklet for PWID to read with their carers prior to their genetics appointment, to help them prepare for what they may experience. With input from Easy to Read experts and PWID who were members of the New South Wales (NSW) Council for Intellectual Disability, the information booklet ‘Getting ready for your visit to the genetics clinic’ was produced. Australian healthcare professionals (HCP) familiar with clinical genetics services were invited to complete an anonymous online survey designed to assess perceived relevance, readability, and utility of the resource. Recruitment of HCPs was pursued via affiliated clinical services and email distribution through clinical genetics organizations. Sixty‐six HCPs completed and submitted the survey. The results demonstrated that HCPs believed the booklet represented a typical clinical genetics service appointment and that the majority would provide a copy of the resource to clients and their carers. They reported that the booklet was easy to understand and entailed appropriate content and images which were presented clearly and simply. Some minor modifications were recommended and incorporated into the resource. A model of customizable booklets such as this could be transferrable across clinical genetics services and guide development of other resources for PWID. This may help to reduce healthcare disparities, improve client satisfaction, and facilitate involvement of PWID in their own healthcare decisions.

show abstract