TANG J1,2, ROGER S4, HOWELL M1,2, WONG G1,2,3, TONG A1,2
1Sydney School of Public Health, The University of Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Australia, 3Centre for Transplant and Renal Research, Westmead Hospital, Australia, 4Renal research , Gosford, Australia
Aim: To describe the perspectives and experiences of eHealth among kidney transplant recipients and their caregivers.
Background: eHealth has become a valuable tool to support self-management and provisions in healthcare. However, there is limited understanding of the impact of eHealth on transplant recipients and their caregivers.
Methods: Face-to-face semi-structured interviews were conducted with 35 participants (30 kidney transplant recipients 5 caregivers) from August 2019 to August 2020. Participants were aged between 22 – 77 years and recruited from 2 centres in NSW (metropolitan and regional). Transcripts were analysed thematically.
Results: Six themes were identified: seeking access to quality care (prioritising and trusting clinician advice, better safety and timeliness, enabled by user-friendly content); supporting self-management (responsive to individualised informational need, empowerment through practical knowledge, encouraging connectedness); assessing reliability and trustworthiness (discerning information integrity, applying to own context, apprehensive about privacy and confidentiality); enhancing health system capabilities (synergy with routine consultations, essential to coordination, achieving goals by real-time monitoring); technology burden and limitation (uncertainty with navigation and comprehension, challenged by technical difficulties, requiring additional preparation, confrontation and distress); and lacking applicable value (diminished assurance of medical provisions, existing practice and systems, hampered by low expectations and disinterest).
Conclusions: Kidney transplant recipients and their caregivers felt eHealth could support healthcare delivery and self-care activities. However, encountered challenges in navigating technology and acknowledged risks of privacy and confidentiality, and misinformation. Our findings support the recipients’ and caregivers’ ability to integrate eHealth into their care by understanding their expectations of eHealth and individualised needs to improve patient and caregiver satisfaction and outcomes.
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