Family members’ experiences of their treatment and feelings of exclusion when caring for people with complex care needs in different care contexts: a methodological and empirical study

A population study conducted by the Swedish National Board of Health and Welfare revealed that almost every fifth adult person in Sweden has given care in some way to a close person who is of older age, has a long-term illness or has a disability. Studies show that family members often feel that they are inadequately prepared to manage the role of caregiver and are in need of information and support from, and collaboration with, the healthcare staff.

The project aims partly to further develop and evaluate the measuring instrument FIAQ’s validity and reliability for use in psychiatric care, the care of older people, palliative care, and the care of people with complicated diabetic disease, and partly to describe and compare the experiences of family members concerning their treatment and feelings of exclusion both within and between these care contexts. Three hundred and fifty family members within the four areas of care are included in the data collection.

Research questions in the study include:

  • How do the participants experience their treatment by the care staff and how important is this for them?
  • Have they felt any feelings of exclusion in relation to the care that the patient is receiving?
  • What is the connection between the experience of how they are treated and the feelings of exclusion?
  • Are there differences in the above questions between participants in the contexts of psychiatric care, the care of older people, palliative care, and the care of people with complicated diabetic disease?

Ongoing studies

Specific focus: Family members of people in diabetes care

Specific focus: Family members of people in care for the older person

Scientific articles in the project can be found under the names of the respective researchers conducting the project.

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U.N's global goals: Good health and well-beingU.N's global goals: Gender equalityU.N's global goals: Reduced inequalities

About the project:

Contact:
Project group/collaborators:
Time period: 2015 -
Research area: Department of Health Care Sciences - Research in the main field of healthcare science
Project status: Ongoing

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Last updated:
4 January 2022