Primary health care provision for adults with a learning disability

Powrie, Elaine

doi:10.1046/j.1365-2648.2003.02633.x

Cited by 27 publications

(12 citation statements)

References 46 publications

(54 reference 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%

“…Ten papers discussed issues around capacity for people with ID to give consent or make other decisions about their health care, 75,84,89 cervical screening, 78,84 sexual health, 85 contraception 81 and end-of-life care. [86][87][88]90 An ethnographic study 75 in which six people with ID were observed having a routine blood test in general practice found that information was not provided in an accessible format to support decisionmaking and that inconsistent levels of explanation were given for the procedure without checking for understanding.…”

Section: Support Capacity To Give Consentmentioning

confidence: 99%

“…Turner 89 highlighted the importance of providing accessible information to support consent to blood tests and listening and responding to any fears in advance of any procedure. A survey of practice nurses 84 found that nurses were concerned about medical decision-making and consent in relation to invasive procedures such as cervical screening. A study 78 using focus groups with adults with ID to explore issues of autonomy and consent identified that adults with ID who are capable of giving informed consent are legally entitled to make their own decisions; however, they may not have the same agency and ability to choose as someone without ID because they may be unduly influenced by the views and preferences of carers or family members.…”

Section: Support Capacity To Give Consentmentioning

confidence: 99%

“…120 Two further studies identified the problems caused by the high turnover of staff. Powrie 84 found that the high turnover of social care staff contributed to poor communication between primary and social care services and Tuffrey-Wijne 86 found that a reliance on agency staff put more pressure on permanent staff to provide consistency of care and meant that training for care staff was of limited value because of the constant turnover of staff.…”

Section: Joint Workingmentioning

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: Support Capacity To Give Consentmentioning

confidence: 99%

Section: Support Capacity To Give Consentmentioning

confidence: 99%

Section: Joint Workingmentioning

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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“…Reasons for the neglect include lack of knowledge, misperceptions, and fear on the part of the provider (Krogman, ). Limited education concerning the needs of DS females contributes to neglect of health care (Elaine, ; Keywood & Flynn, ; Krogman, ). Social inclusion has implemented change in education and living arrangements for individuals with IDs but has done little for the problem of health care.…”

Section: Issue Of Concernmentioning

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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A cascade of disparities: Health and health care access for people with intellectual disabilities

Krahn

Hammond

Turner

2006

Ment. Retard. Dev. Disabil. Res. Rev.

628

539

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People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.

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Primary health care provision for adults with a learning disability

Cited by 27 publications

References 46 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

A cascade of disparities: Health and health care access for people with intellectual disabilities

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