Patient-centred primary care of adults with severe and profound intellectual and developmental disabilities: Patient-caregiver-physician relationship.

OBJECTIVE

To explore the process of the development of the patient-physician relationship in adult patients with severe or profound intellectual and developmental disabilities (IDD), from the perspective of the patients' caregivers.

DESIGN

Constructivist grounded theory.

SETTING

St John's, NL.

PARTICIPANTS

Thirteen primary caregivers (5 males, 8 females) of 1 or more adults 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 the caregivers, the core process in the development of the patient-physician relationship was protection. This process began as a result of the caregiver's recognition of the patient's vulnerability and moved through a number of stages before resulting in the development of a dynamic triangular interaction between the patient, caregiver, and family physician. First, the caregiver provides extreme nurturing to the patient, which results in the development of a strong bond between them. The patient and caregiver approached the family physician together as one unit, and then decided together on whether or not to open the patient-caregiver bond to the physician. The resultant dynamic triangular interaction formed the starting point from which 1 of 4 different relationship-development trajectories began. Which trajectory was taken and, therefore, the character of the relationships that developed was determined by how the caregiver and patient experienced their interaction with the family physician.

CONCLUSION

Findings highlight the process of protection and the centrality of the patient-caregiver bond within the development of a triadic relationship involving the patient with IDD, the caregiver, and the family physician. How a physician approaches this bond can influence the trajectory of the resulting relationship.