Family Medicine Publications

Primary care of adults with severe and profound intellectual and developmental disabilities: Family physicians' perspectives on patient-physician relationships

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Canadian family physician Medecin de famille canadien



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OBJECTIVE: To explore family physicians' perspectives on the development of the patient-physician relationship with adult patients living with severe or profound intellectual and developmental disabilities (IDD). DESIGN: Constructivist grounded theory. SETTING: St John's, NL, and across Canada. PARTICIPANTS: Fifteen family physicians currently caring for patients with severe or profound IDD. METHODS: Data were collected via in-depth, semistructured interviews conducted in-person or by telephone. Interviews were audiorecorded and transcribed verbatim. Field notes were documented immediately by the interviewer and discussed with the research team. Memos in the form of reflective notes served as additional sources of data. MAIN FINDINGS: From the perspective of family physicians, the core process in the development of the patient-physician relationship was acceptance. This acceptance was bidirectional. With respect to family physicians accepting patients, family physicians had to accept that their patients with severe and profound IDD were as equally deserving of their respect as any other patient-as unique individuals with their own goals and potential. With respect to patients accepting their family physicians, family physicians had to seek out signs of acceptance from their patients to fully appreciate and develop a trusting relationship. This bidirectional process of acceptance required family physicians to adapt the way they practised (eg, by spending more time with the patient and finding alternate forms of communication). It also required family physicians to define their role (eg, building trust and being an advocate) in a relationship that had the patient as the primary focus but simultaneously acknowledged the important involvement of the caregiver. CONCLUSION: For family physicians, the process of acceptance seems to underpin the development of the patient-physician relationship with adult patients with severe or profound IDD. Findings highlight the need for family physicians to adapt the way they deliver care to these patients and define their role in these complex relationships. Ultimately, this study highlights family physicians' acceptance of their patients' humanity regardless of the nature of the relationship that was created between them.

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