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

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dc.contributor.author Kuyler, Arine
dc.contributor.author Johnson, Ensa
dc.contributor.author Bornman, Juan
dc.date.accessioned 2024-08-14T11:38:17Z
dc.date.available 2024-08-14T11:38:17Z
dc.date.issued 2023-12-04
dc.description DATA AVAILABILITY : Data described in the manuscript, code book, and analytic code will not be made available due to ethical considerations and the confidentiality of participants. en_US
dc.description.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. en_US
dc.description.department Centre for Augmentative and Alternative Communication (CAAC) en_US
dc.description.librarian am2024 en_US
dc.description.sdg SDG-03:Good heatlh and well-being en_US
dc.description.uri https://journals.lww.com/jisprm/pages/default.aspx en_US
dc.identifier.citation Kuyler, A., Johnson, E., Bornman, J. 2023, 'Support needs of familiar caregivers caring for persons who are minimally responsive : an ecological system approach', Journal of the International Society of Physical and Rehabilitation Medicine, vol. 6, pp. 102–111. http://dx.DOI.org/10.1097/ph9.0000000000000025. en_US
dc.identifier.issn 2589-9457
dc.identifier.other 10.1097/ph9.0000000000000025
dc.identifier.uri http://hdl.handle.net/2263/97634
dc.language.iso en en_US
dc.publisher Lippincott, Williams & Wilkins en_US
dc.rights © 2023 The Author(s). This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY). en_US
dc.subject Caregivers en_US
dc.subject Family en_US
dc.subject Health care en_US
dc.subject Needs en_US
dc.subject Support en_US
dc.subject SDG-03: Good health and well-being en_US
dc.title Support needs of familiar caregivers caring for persons who are minimally responsive : an ecological system approach en_US
dc.type Article en_US


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