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Can Fam Physician. 2019 Apr;65(Suppl 1):S47-S52.

What adults with intellectual and developmental disabilities say they need to access annual health examinations: System navigation support and person-centred care.

Author information

1
Doctoral student in clinical psychology at the University of Ottawa in Ontario and is also a doula.
2
Doctoral student in clinical psychology at the University of Ottawa.
3
Epidemiologist and Professor in the Department of Public Health Sciences and the Department of Psychiatry at Queen's University in Kingston, Ont, Director of the National Epidemiologic Database for the Study of Autism in Canada and the Multidimensional Assessment of Providers and Systems, a project lead within the Health Care Access Research and Developmental Disabilities research program, and Secretary to the International Association for the Scientific Study of Intellectual and Developmental Disabilities.
4
Clinical psychologist and Associate Professor in the School of Psychology at the University of Ottawa. Virginie.Cobigo@uottawa.ca.

Abstract

OBJECTIVE:

To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs).

DESIGN:

Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD.

SETTING:

Ontario.

PARTICIPANTS:

A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs.

METHODS:

Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs.

MAIN FINDINGS:

Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this support were also identified (lack of rapport, perception of unfriendliness, perception that the physician is too busy to tend to needs, and perception that the physician did not want to perform AHEs).

CONCLUSION:

For adults with IDD, system navigation support and person-centred care were central to accessing AHEs. In collaboration with informal caregivers, physicians have an important role in reducing barriers to patients accessing this valuable preventive care opportunity. Physicians can fulfil some of the needs disclosed by adults with IDD related to attending AHEs by offering support for scheduling appointments, by linking patients with IDD to resources that facilitate appointment attendance, and by increasing consultation duration.

PMID:
31023781
PMCID:
PMC6501723

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