Support needs of familiar caregivers caring for persons who are minimally responsive : an ecological system approach

Abstract

OBJECTIVE : The main aim of this study was to identify the multidimensional support needs of familiar caregivers and to identify the lessons they had learned throughout the caregiving process. BACKGROUND : Persons who are minimally responsive require continuous medical care—either at home or at a care facility. The home context is often preferred as it facilitates the care process in a familiar environment and reduces adverse health outcomes, such as mortality. Home care of the person who is minimally responsive is often managed by familiar caregivers who support these individuals in all aspects of daily living. This caregiving experience may be burdensome for the familiar caregiver as increased physical, psychological, emotional, social, and financial requirements, and responsibilities could cause multidimensional stressors. METHODS : A qualitative descriptive design using 7 semistructured in-depth interviews was used with 7 familiar caregivers of persons who were/are minimally responsive. These participants were obtained from a private care facility and thematic analysis was used to analyze the in-depth interviews. RESULTS : The ecological systems theory was used to identify and link 11 themes with subthemes to the support needs reported by the caregivers. In addition, the results included the lessons learned by these caregivers from their caregiving journey. CONCLUSIONS : From the findings of this study, it is clear that caregivers mostly experience challenges within the microsystem and mesosystem with limited challenges in other systems. These systems are, however, integrated and can impact the individual caregiver substantially. Health care practitioners, in particular, should be aware of caregivers’ support needs and give them adequate support at home.