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Primary healthcare teams - an optimal health service for persons with intellectual disabilities?

Author:

Olga Espegren

Centre for Development of Institutional and Home Care Services, NO
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Abstract

Introduction

Background: Persons with intellectual disabilities (ID) have had persistent inferior health status, shorter life expectancy and poorer access to health services compared to the general population. People with ID and their caregivers have often experienced difficulties in communication with health service providers like general practitioners and emergency room personnel. Despite increased health risk, people with ID less frequently see their general practitioner (GP) than others. This may negatively affect the health status and the health-related quality of life of people with ID. In Norway, Primary Healthcare Teams (PHT) are being piloted in an attempt to improve primary healthcare services to these and other underprivileged groups.

Aim

In the present study, we will explore the feasibility of PHT for persons with ID living in community shared housing facilities; also possible benefits and disadvantages of the different organisational models.

Method

We will apply a qualitative research design, world café, in November 2019, to explore how different stakeholders experience the PHT model with respect to patient health status, patient safety and health-related quality of life. Participants include community workers and managers in shared housing facilities, and family members and other caregivers of the residents’ with ID living in the shared housing, divided into small groups, according to whether they have received services from PHT or not. Questions include experiences regarding received health care when it comes to number of consultations; use of medication; use of force; patient compliance; experienced health and quality of life; and also increased/decreased need for other services (e.g. hospital visits, visits to regular general practitioner). Every group will have an instructed individual referrer that collects data. Anonymized data will be analysed and interpreted individually by three researchers.

Expected outcomes

Further insight regarding health service, and needs, for people with ID in shared housing facilities, as observed by community workers, managers, family members and other caregivers. Differences in health care service through PHT services compared to standard healthcare, with focus on areas such as health, patient safety and quality of life. 

Workshop as a research method may be a useful tool to determine caregivers and relatives’ experience with health care. Good discussions and honest testimonials are dependent on a feeling of psychological safety in the group. The various groupings (e.g. parents, community workers and managers) to ensure anonymity, may limit different viewpoints of attendants. The referent will be instructed to encourage answers from the whole group, ensuring that every opinion is brought forth. When interpreting the results, anonymity may limit detailed descriptions of individual differences and parameters that affect experienced improved patient safety, quality of life; Ethical reflection describes the dilemma of producing valid detailed research versus securing anonymity.

Suggestions for future research

Support findings with quantitative research.

Previous review identified health checks as the only identified intervention that increases health promotion and disease prevention in people with ID; if this is the case it is vital to research into how regular health checks are performed; how we organize them; and what health checks include for persons with ID. 

How to Cite: Espegren O. Primary healthcare teams - an optimal health service for persons with intellectual disabilities?. International Journal of Integrated Care. 2021;21(S1):88. DOI: http://doi.org/10.5334/ijic.ICIC20476
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Published on 01 Sep 2021.

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