Principles of effective communication with patients who have intellectual disability among primary care physicians
Introduction
Intellectual disability (ID) is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18 [1]. Since the 1990s, in line with the social model of disability, individualization, participation, normalization and inclusion have been the main principles of care for people with intellectual disability (ID) [2]. In line with this, article 25 of the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) states that: “Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Parties shall provide persons with disabilities with the same range, quality and standard of free or affordable health care and programs as provided to other persons” [3]. Although people with ID often have more health problems than the general population, [4], [5] these individuals, and their families, face many obstacles in seeking basic health care. Few providers receive specific training for treating this population and the health service systems in many countries offers few incentives to ensure appropriate health care for these patients. Consequently, studies have shown that individuals with ID frequently receive poorer health treatment [6]. In line with this, patients with ID have complained about the quality of communication with their physician, feeling that they are frequently misunderstood [19], [28]. In addition, it has been shown that frequently the ability of an individual with ID to make a healthcare decision is not taken into concern while parents and professionals make these decisions on their behalf [16]. The 2001 report of the US National Institute of Health identified six main goals for improving health care of this population, which included improving the knowledge, understanding and training of health care providers [7].
Many barriers to the provision of primary care for people with ID relate to problems in exchanging health information between the patient and the primary physician. Part of the problem is related to ineffective communication between the patient with ID and the treating physician [8]. This is also true in the general population where negative assessments of physician communication skills are associated with higher general dissatisfaction with the physician [9]. However, the difficulties related to poor communication are more likely when the patient has ID.
Very few attempts have been made to map communication principles with patients with ID. Using relatively small samples and mainly qualitative research techniques, these studies have led to the development of preliminary guidelines for effective communication principles with patients with ID. These include: (1) focusing on the abilities of the individual and not the disability, (2) developing a trusting relationship, (3) keeping eye-contact and speaking directly with the patient using speech that is adequate to the patients’ age, (4) asking for the patient's permission before involving their support figure, (5) as much as possible, gathering the medical history from the patient him/herself, (6) making sure the patient knows that at any stage he can ask his support figure to leave the room, (7) using a variety of communication techniques in order to fit the patient's understanding, (8) making sure the physician has sufficient time for the practice visit, (9) explaining and demonstrating procedures before starting any physical examination [10], [11], [12], [19]. Though these guidelines are very important, little research has examined their actual implementation and utilization by the primary care physician. Further, previous research has not examined how attitudes held by physicians may impact on the implementation of these communication principles. The aim of this study was to examine primary care physicians’ implementation of effective communication principles with patients who have ID and its predictors. The correlates examined in this study are mapped in Fig. 1.
Section snippets
Study design
This was a mixed methods study based on qualitative and quantitative research methods. First, qualitative focus groups (N = 4) and interviews (N = 13) were held with four groups of informants: individuals with ID, parents of individuals with ID, direct care takers and physicians in order to elicit effective communication principles. Adults with ID and direct care takers were a convenience sample recruited from residential settings for persons with ID. Parents of adults with ID were a convenience
Description of study population
Participants in the qualitative phase were six adults with mild to moderate ID, nine parents of adults with ID, three direct care takers and seven primary care physicians who were experienced in the ID field. Participants in the quantitative phase were a representative sample of 440 primary care physicians who work within Maccabi Health Maintenance Organization in Israel (35% of all physicians within Maccabi HMO). Of these physicians, 255 (58.0%) were male, the average age was 52.3 (SD = 11.2).
Discussion
Findings from this study provide additional support and expand upon the effective communication principles that have been mapped in previous studies [10], [11], [12], [19]. Specifically, findings provide support for the importance of simplifying information to the patient by speaking directly to the patient and adapting speech to the patients’ understanding and using a variety of techniques such as gestures and body language. Second, results point to the importance of preparing the patient
Conflict of interest
The authors have no potential conflicts of interest.
Informed consent
I confirm all personal identifiers have been removed so that the persons described are not identifiable and cannot be identified through the details of the story.
Acknowledgment
The research was supported by a grant from the Israel National Institute for Health Policy Research (grant number R/65/2012).
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