Could Ethical Tensions in Oral Healthcare Management Revealed by Adults with Intellectual Disabilities and Caregivers Explain Unmet Oral Health Needs? Participatory Research with Focus Groups

Blaizot, Alessandra; Hamel, Olivier; Folliguet, Marysette; Hervé, Christian; Méningaud, Jean-Paul; Trentesaux, Thomas

doi:10.1111/jar.12231

Cited by 7 publications

(27 citation statements)

References 29 publications

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“…Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review’s identified studies. 22 , 31 – 33 A warm, friendly, and caring attitude from healthcare providers enables service users to access healthcare facilities and discuss sensitive health concerns. 22 , 34 – 37 …”

Section: Resultsmentioning

confidence: 99%

“…Fear and embarrassment is a barrier to accessing health care for individuals with intellectual disabilities and/or autism. 57 – 59 These include fears of being judged over lifestyle choices, of blood tests and vaccinations, 38 of medical instruments, 31 and fears associated with a lack of understanding about screening procedures. 59 Physical examinations can also be a source of embarrassment and/or discomfort for individuals with intellectual disabilities.…”

Section: Resultsmentioning

confidence: 99%

“… 38 , 60 – 63 Some people with intellectual disabilities and/or autism find the clinical environment daunting, 63 , 64 owing to unpleasant or alarming noises, odours, and bright lights. 31 , 65 The waiting room may induce anxiety, especially if the individual is unsure of why they are there. 32 Facilitators, in terms of reasonable adjustments in the clinical environment, may include easy-read information, coloured pictures, models, photos, videos, symbols, and demonstration dolls.…”

Section: Resultsmentioning

confidence: 99%

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

Doherty¹,

Atherton

Boland³

et al. 2020

BJGP Open

110

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BackgroundGlobally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice.AimTo investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs.Design & settingAn integrative review was undertaken, which used systematic review methodology.MethodElectronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies.ResultsSixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes.ConclusionAdolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

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

Doherty¹,

Atherton

Boland³

et al. 2020

BJGP Open

110

View full text Add to dashboard Cite

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“…Conversely, discussion of the difficulties in these therapies should be introduced with attention and tact so as not to strengthen a feeling of inequality or injustice in the patient/caregiver. In a previous study among patients with intellectual disabilities and caregivers, all of the participants stressed the importance of developing information appropriate to each situation . The whole issue, in this context of difficult decisions, is how the health‐care teams and caregivers can accompany patients in their exercise of a form of autonomy – a relational autonomy – according to their needs, possibilities, and expectations.…”

Section: Discussionmentioning

confidence: 99%

“…The study was conducted between 01 June 2014 and 30 September 2015 at the Laboratory of Medical Ethics and Forensic Medicine of Paris Descartes University (France). The choice of method and the research questions were built from two previous studies in which patients and caregivers helped in an advisory capacity .…”

Section: Methodsmentioning

confidence: 99%

Obstacles to comprehensive dental care in patients with sustained limitations of their decision‐making abilities: findings from a Delphi study

Blaizot

Catteau

Delfosse

et al. 2018

European J Oral Sciences

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The objective of this study was to explore the therapeutic limitations experienced by a panel of special-care dentists in France when treating patients with sustained limitations of their decision-making abilities. We used a Delphi technique conducted in three rounds from 01 June 2014 to 30 September 2015. A first questionnaire comprising open-ended questions was addressed to 72 panellists. A content analysis of the returned questionnaires served to draft a second questionnaire comprising closed-ended questions; this was sent to the 28 panellists who responded in the first round. A third questionnaire was sent to the 20 panellists who responded in the second round to give them an opportunity to reconsider their response in the context of the second-round response group. Sixteen panellists answered the last round. A large majority agreed on the importance of providing comprehensive care, but they encountered obstacles at two time points: (i) when proposing the care; and (ii) when setting it up. The panel put forward recommendations in two main areas: (i) the training of those involved in oral health decisions; and (ii) dental care management and organization of the care system. The study provided a foundation for building future orientations in health care for patients with limited decision-making abilities.

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Does oral care knowledge amongst UK nurses effectively support people with intellectual disabilities across their lifespan?

Thurston

2021

BDJ Team

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Purpose Poor oral health can negatively impact on the overall health of an individual. Evidence highlights nurses' misgivings about providing oral care. Method Several articles were sourced across three clinical databases and four 'core' papers were critiqued using CASP. Findings A literature review identified two areas which require service improvement: 1) Co-presented oral care training should be delivered to staff teams, incorporating material which is developed in collaboration with allied health and social care professionals; 2) Dental teams should be included in the production of care plans for people with a learning disability. Conclusions Indications of ritualistic practice remain in UK nurses' approach to oral care. Daily issues faced by staff teams and the voices of people with a learning disability are underrepresented. Training and integrated care planning could significantly improve oral health outcomes for people with a learning disability.Editor's note: 'Nurse' and 'nurses' refers to general (medical) nurses in this article rather than dental nurses. AimA learning disability is a reduced ability to learn and understand new concepts or Mark Thurston, a former dental care professional who is currently a third year learning disabilities nursing student, summarises the findings of his dissertation -a literature review and proposed service improvement -undertaken as part of his degree in Nursing (Learning Disabilities) at the University of the West of England, Bristol.

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Could Ethical Tensions in Oral Healthcare Management Revealed by Adults with Intellectual Disabilities and Caregivers Explain Unmet Oral Health Needs? Participatory Research with Focus Groups

Abstract: These discrepancies could partly explain multiple attempts to find the 'right' dentist or the fact that care was abandoned, and could at least contribute to oral health needs being unmet.

Cited by 7 publications

References 29 publications

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

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

Obstacles to comprehensive dental care in patients with sustained limitations of their decision‐making abilities: findings from a Delphi study

Does oral care knowledge amongst UK nurses effectively support people with intellectual disabilities across their lifespan?

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