Informational and educational needs of caregivers of neurologic inpatients in rehabilitation treatment: A qualitative exploratory study.

Abstract

Introduction: The aim of the present study was to identify information and educational needs of neurological inpatients during residential rehabilitation from the caregivers' perspective. On top of that, it was important to acknowledge the conceptual framework underlying the complexity of needs, for the development in future research of an early identification of caregiver's information needs assessment tool. This preliminary study will allow to define the dimensions on which to measure caregiver needs and the quality of care provided to the patients and their families.

Material and methods: Focus groups of family caregivers of inpatients admitted to the Neurorehabilitation Units by the ICS Maugeri Institutes were conducted to explore the caregivers needs. All focus groups were tape-recorded and contemporaneous notes made. The tapes were transcribed and thematic analysis was used to develop categories of needs. To ensure consistency between groups, a semi-structured schedule was used to guide the focus groups.

Results: In the analysis of the statements extracted from the transcripts we defined five main themes of information needs expressed from caregivers: education, hospital care organization, legal and social care management and emotional or psychological support.

Conclusion: The results provided the identification of the domains essential for the development of a questionnaire that measures the complexity of the caregiver's information needs during residential rehabilitation. The caregivers' statements expressed in the focus groups allowed to identify five main kinds of needs. Moreover, some suggestions and ideas to improve the information and education materials to satisfy these needs emerged from caregivers and health professionals during team meetings.