Down syndrome: exploring the knowledge, attitudes and practice of GPs

Jones, Jill; Kemp, Kim

doi:10.7748/ldp2007.10.10.8.18.c4280

Cited by 3 publications

(8 citation statements)

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“…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 studies 73,[78][79][80]82,83 raised the issue of extra time to consult with people with ID. This caused problems for some during busy clinics, 73 whereas others routinely offered double appointments for people with ID.…”

Section: Time Neededmentioning

confidence: 99%

“…This caused problems for some during busy clinics, 73 whereas others routinely offered double appointments for people with ID. 79,82 Lees et al 80 highlighted the importance of not rushing people with ID and Perry et al 83 found that long waiting times increased anxiety for some people, which had an impact on the consultation. Williamson et al 91 suggested that people with ID could be offered the first appointment of the clinic if waiting was difficult for them, whereas Perry et al 83 highlighted the importance of offering flexible appointment times so that people did not miss day services that they might be paying to attend.…”

Section: Time Neededmentioning

confidence: 99%

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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

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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.

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Section: Interaction During a Consultationmentioning

confidence: 99%

Section: Time Neededmentioning

confidence: 99%

Section: Time Neededmentioning

confidence: 99%

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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

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“…The review of literature yielded four quantitative studies (Henderson et al, 2007;Jones & Kemp, 2007;Piachaud, Rohde, & Pasupathy, 1998;Van Allen, Fung, & Jurenka, 1999) and one ongoing clinical trial (Cincinnati Children's Hospital Medical Center, 2014), which will be addressed separately. The four earlier studies were conducted in Scotland, England, and British Columbia.…”

Section: Quantitative Research Overviewmentioning

confidence: 99%

“…The study includes adults with DS, both male and female; no outcomes have been reported at this time. Jones and Kemp (2007) surveyed GPs in Scotland. The decision to study GPs and DS care was made to determine if the needs of patients with DS were being met in the general practice area, the first point of contact for health care in the United Kingdom.…”

Section: Quantitative Research Overviewmentioning

confidence: 99%

Females with Down syndrome: Lost opportunities in primary care

Toler

2015

Journal of the American Association of Nurse Practitioners

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Purpose Nurse practitioners (NPs) need to be aware of the health disparities that exist between adult females with and without Down syndrome (DS). It is essential that necessary primary and preventive healthcare services are available to women with DS to maintain adequate health and quality of life, and reduce the occurrence of misdiagnosed or underdiagnosed treatable diseases. Data sources Review of published literature, DS society reports, and U.S. government reports. Conclusions A lack of agreed guidelines for the screening of adult females with DS contributes to unmet health needs in primary care for this population. Adequate promotion of health in all persons with disabilities, including the specific needs of women with DS, will help prevent the development of preventable secondary disabilities. Research shows that health promotion, screenings, and preventive care are overlooked or ignored in the female population with DS. Barriers to this care were consistent with misconceived attitudes and beliefs about adults with DS and a lack of training for primary care providers in caring for persons with disabilities. Implications for practice Although much research is needed, there are some resources for NPs who provide care for this vulnerable population. Screening for preventable conditions, such as obesity, sexually transmitted infections, and sexual exploitation, can improve the quality of life for adult women with DS.

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Postrzeganie społeczne osób z zespołem Downa

Pokorska¹

2015

Kulturowe I Społeczne Aspekty Niepełnosprawności

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Down syndrome: exploring the knowledge, attitudes and practice of GPs

Cited by 3 publications

References 0 publications

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

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

Females with Down syndrome: Lost opportunities in primary care

Postrzeganie społeczne osób z zespołem Downa

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