Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Doherty, Alison Jayne; Atherton, Helen; Boland, Paul; Hastings, Richard P.; Hives, Lucy; Hood, Kerenza; James-Jenkinson, Lynn; Leavey, Ralph; Randell, Elizabeth; Reed, Janet; Taggart, Laurence; Wilson, Neil; Chauhan, Umesh

doi:10.3399/bjgpopen20x101030

Cited by 129 publications

(120 citation statements)

References 78 publications

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“…People with intellectual disabilities are also more likely to experience inequalities and inequities in healthcare including: communication challenges, a lack of support, discriminatory attitudes by healthcare staff, and a failure by service providers to make ‘reasonable adjustments’ to meet this population's needs (Ali et al, 2013; Carey et al, 2016; Doherty et al, 2020; Emerson & Hatton, 2014; Hatton et al, 2011; Michael, 2008). Whilst some factors (such as genetic/chromosomal conditions) cannot be directly targeted at least for now, lifestyle programmes (i.e.…”

Section: Introductionmentioning

confidence: 99%

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a ‘context, mechanism and outcome’ evaluation

Taggart

Doherty

Chauhan

et al. 2020

Research Intellect Disabil

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Background Obesity is higher in people with intellectual disabilities. Aims There are two aims of this explorative paper. Firstly, using a realist lens, to go beyond ‘what works’ and examine the ‘context, mechanisms and outcomes’ (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice. Method We explored six‐review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework. Results There were few theoretically underpinned, multi‐component programmes that were effective in the short to long‐term and many failed to explore the ‘context and mechanisms’. We developed a logic model and engaged in two co‐production workshops to refine this model. Discussion Using a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi‐component, have a closer understanding of the interplay of the ‘context and mechanisms’, and co‐designed using a logic model framework.

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Section: Introductionmentioning

confidence: 99%

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a ‘context, mechanism and outcome’ evaluation

Taggart

Doherty

Chauhan

et al. 2020

Research Intellect Disabil

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“…Pharmacists must promote safety at the individual patient level [ 30 ].To address their medication-related needs, pharmacists need to accept greater responsibility for the outcomes of medicines use and should evolve their practices to provide their high-risk patients with intellectual disabilities, with individualized services. It is recognized that, healthcare providers (both primary and acute health care) may lack specialist training in this field [ 63 ]. During hospital stays and at discharge, it is critical pharmacists educate patients on how to take their medicines and to provide pertinent information on things such as drug-drug-interactions and drug-food-interactions in patient-friendly language [ 64 ].…”

Section: Discussionmentioning

confidence: 99%

“…They include: medical (i.e., discordant conditions, chronic pain, medication intolerance, unexplained symptoms, and cognitive issues); socioeconomic (e.g., the unaffordability of medication, family stressors, and low levels of health literacy); mental health (e.g., depression or addictions resulting in poor medication adherence); and behavioural issues (e.g., anxiety about one’s symptoms). People with intellectual disabilities may be at increased risk of poor medication knowledge as they often experience additional challenges in health-related communication due to factors including lack of accessible information, poor communication skills of healthcare professionals and communication, and adaptive and cognitive difficulties associated with intellectual disabilities [ 63 ]. Keelan reported never having received any advice from his pharmacist.…”

Section: Discussionmentioning

confidence: 99%

Experiences of the Medication Use Process by People with Intellectual Disabilities. What a Pharmacist Should Know!

Flood

Henman

2021

Pharmacy

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There is a scarcity of information about the experience of people with intellectual disabilities in the medication use process. Six people with intellectual disabilities consented to be interviewed by a pharmacist to determine their knowledge and views of medication use. Data from semi-structured interviews were analysed using a grounded theory approach. Self-determination and risk to the quality of the medication use process were identified as theories. Literature review provided two explanations—vulnerabilities of people with intellectual disabilities in healthcare and pharmacists have a role to play in ensuring a quality medication use process for people with intellectual disabilities. People with intellectual disabilities may be ‘expert patients’ and can provide valuable insights into their experience of medication use. They may be ‘high risk’ patients but may not be recognized as such by pharmacists.

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“…Australia has a similar health care system to Sweden in that primary health care and the GP are the first contact for the population for non-emergency health care [29]. Another study from Australia reports that people with ID are getting fewer referrals to specialist care compared to people without ID from their GPs in primary health care [30,31]. Weise and colleagues identified from previous research several barriers of access to the health care system [29] for people with ID.…”

Section: Discussionmentioning

confidence: 99%

“…The limitation that our data did not include common uncomplicated health conditions needs to be kept in mind when interpreting the result from this study. The scarce knowledge available highlight a need for representative studies of primary health care use in people with intellectual disabilities [31]. Future research also needs to identify potential inequalities caused by specific barriers for people with intellectual disabilities to access health care [63].…”

Section: Strength and Limitations Of The Studymentioning

confidence: 99%

Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study

Ahlström

Axmon

Sandberg

et al. 2020

BMC Health Serv Res

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Background Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. Methods This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002–2012. Results A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia. Conclusions Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.

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Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Cited by 129 publications

References 78 publications

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a ‘context, mechanism and outcome’ evaluation

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a ‘context, mechanism and outcome’ evaluation

Experiences of the Medication Use Process by People with Intellectual Disabilities. What a Pharmacist Should Know!

Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study

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