Developing an empowerment program for informal caregivers to care for the elderly at the end of their lives at home

Abstract

Introduction: Considering the increasing trend of the elderly population in Iran, supporting and caring for the elderly with end-of-life diseases has created many problems for informal caregivers, which include family members, friends, and relatives. Informal caregivers of the elderly are hidden patients who are susceptible to many physical, mental and social problems, therefore maintaining their independence, empowering, training and supporting them can provide comprehensive support and quality of care.

Method: The present study, with a review of non-systematic literature, programs for empowering informal caregivers in developed countries were summarized, it was designed according to the data collected from the Likert questionnaire. In the next phase, specialists and experts entered the Delphi study with a designed questionnaire. Based on the designed questionnaire, a semi-structured interview was conducted with informal caregivers.

Findings: In the non-systematic literature review, five programs, laws and executive policies were found in England, Australia, Canada, and Hong Kong. By holding focused group discussion sessions using the opinions of experts from the results of the previous stages, a program was designed with 64 standards, including executive responsibility, how to present the program, the place of the program, the forces used, the rights and rights of caregivers, educational content, and how to finance. In the following, the results of qualitative interview content analysis were divided into four main categories, including the effects of caregiving on family caregivers, the perceived needs of caregivers, challenges related to informal caregivers without a license, and the requirements for empowering informal caregivers and 17 subcategories.

Conclusion: The standard model compiled from the results of this study can be useful for improving the ability of informal caregivers in the field of care and protection of their rights and death in peace for the elderly with terminal illness, as well as improving service delivery and quality.