Doctor-patient communication with people with intellectual disability - a qualitative study

<p>Abstract</p> <p>Background</p> <p>People with intellectual disability (ID) expressed dissatisfaction with doctor-patient communication and mentioned certain preferences for this communication (our research). Since many people with ID in the Netherlands have recently moved from residential care facilities to supported accommodations in the community, medical care for them was transferred from ID physicians (IDPs) to general practitioners (GPs) in the vicinity of the new accommodation. We addressed the following research question: 'What are the similarities and differences between the communication preferences of people with ID and the professional criteria for doctor-patient communication by GPs?'</p> <p>Methods</p> <p>A focus group meeting and interviews were used to identify the preferences of 12 persons with ID for good communication with their GP; these were compared with communication criteria used to assess trainee GPs, as described in the MAAS-Global manual.</p> <p>Results</p> <p>Eight preferences for doctor-patient communication were formulated by the people with ID. Six of them matched the criteria used for GPs. Improvements are required as regards the time available for consultation, demonstrating physical examinations before applying them and triadic communication.</p> <p>Conclusions</p> <p>People with ID hold strong views on communication with their doctors during consultations. GPs, people with ID and their support workers can further fine-tune their communication skills.</p

Health problems of people with intellectual disabilities: the impact for general practice

This study aimed to analyse the health problems and prescriptions of people with intellectual disabilities registered with GPs. Within the Second Dutch National Survey of General Practice evidence was gathered on the differences in health problems between people with intellectual disabilities and control persons (without intellectual disabilities). In a 1:5 matched sample, people with intellectual disabilities paid 1.7 times more visits to GPs. They presented a different morbidity pattern, and received four times as many repeat prescriptions. People with intellectual disabilities increase a GP's workload

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities : A modified Delphi study

Objective: Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. Methods: We conducted a two-round modified Delphi study with Dutch GPs (n = 22), support workers (n = 18) and ID physicians (n = 20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. Results: Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. Conclusion and practice implications: This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care

Background: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. Method: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20–65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. Results: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). Conclusions: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.</p

End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

Item does not contain fulltextBackground: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. Results: The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other

De convergente validiteit van de ‘Signaleringslijst Verslikken’ bij mensen met (zeer) ernstige verstandelijke en meervoudige beperkingen

Dit artikel is een samenvatting van het artikel: The convergent validity of a Dutch Screening tool for Dysphagia (Signaleringslijst Verslikken) for people with severe or profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 2019, 32, 994–1001.