Do they agree? How parents and professionals perceive the support provided to persons with profound intellectual and multiple disabilities

ABSTRACT

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration.

Method: An adapted version of the Dutch Measure of Processes of Care was completed by 109 parents, and an adapted version of the Dutch Measure of Processes of Care for service providers was completed by 144 professionals. Agreements between parents and professionals were analysed using multilevel analysis.

Results: In general, the parents and the professionals disagreed on occurrence and importance of both the Enabling and Partnership scale and the Respectful and Supportive Care scale.

Conclusion: In order to deliver family-centred support, service providers should be aware that there are disagreements between the parents’ perception of what is important in the support provided and the perception of the professional.

KEYWORDS:

• multiple disabilities
• profound intellectual disability
• parents
• professionals
• collaboration
• Measure of Processes of Care
• family-centredness

Acknowledgements

We gratefully acknowledge the participation of the parents and professionals who completed the questionnaire for this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 In the Netherlands, parents of a person with PIMD have access to an extensive system of professional services, such as different types of schools for special education, with or without therapy services, day care centres, or various small- or large-scale housing projects.

2 Directly involved professionals are professionals that are involved in the support of persons with PIMD on a daily basis. In the Dutch context, these are professionals with a social or educational background. Indirectly involved professionals are professionals that are involved in the support of persons with PIMD, but not on a structural daily basis, such as psychologists, physicians and therapists (speech therapists, occupational therapists, physical therapists, dieticians).