The Role of Specialised Medical ID Expertise in Care Consultations for People With Intellectual Disabilities: Experiences of Caregivers and Patients

IF 2.2 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-25 DOI:10.1111/jar.70042

Marian E. J. Breuer, Esther J. Bakker-van Gijssel, Tim Pelle, Jenneken Naaldenberg, Geraline L. Leusink

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Abstract

Background

This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice.

Methods

Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned (1) ID physician's knowledge and skills, (2) communication between participants and the ID physician and (3) coordination between the ID physician and other professionals.

Results

Seven themes addressing the roles of the ID physician were identified. Five roles relate to actions and attributes during medical consultations: clinician, patient-centred doctor, holistic physician, human and sparring partner for the patient's network. Two roles relate to actions and attributes around medical consultations: coordinator and advocate.

Conclusions

Patients with intellectual disabilities and their caregivers value ID physicians' roles beyond clinical skills during consultations, including roles related to care coordination, having a professional network and advocating in a broader context around medical consultations.

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专业医疗ID专业知识在智障人士护理咨询中的作用：护理人员和患者的经验

研究背景本研究旨在探讨患者及其护理人员在门诊ID诊所与ID专科医生进行医疗咨询的经历和期望。方法对患者及其护理人员进行了 15 次半结构式访谈。访谈主题涉及：（1）ID 医生的知识和技能；（2）参与者与 ID 医生之间的沟通；（3）ID 医生与其他专业人员之间的协调。结果确定了七个涉及 ID 医生角色的主题。五种角色与医疗咨询过程中的行为和属性有关：临床医生、以患者为中心的医生、全科医生、人和患者网络的伙伴。两个角色与医疗咨询前后的行动和属性有关：协调者和倡导者。结论智障患者及其照护者重视智障医生在会诊过程中临床技能以外的角色，包括与护理协调、拥有专业网络和在更广泛的医疗会诊背景下进行宣传有关的角色。

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.