Navigating uncertainty: Long-term care planning for individuals with intellectual disabilities in pandemic-stricken Hong Kong

Abstract

<b>Background:</b> The COVID-19 pandemic has exacerbated the challenges faced by caregivers of individuals with intellectual disabilities (ID) in Hong Kong, particularly regarding long-term care planning.

<b>Objectives:</b> This study explores the lived experiences and perspectives of these caregivers during this unprecedented crisis.

<b>Methods:</b> Employing a qualitative phenomenological approach, in-depth interviews were conducted with seven caregivers of adults with ID in Hong Kong. Participants were purposely selected based having experienced significant challenges related to long-term care during the pandemic. Data analysis was performed using Colaizzi’s method of descriptive phenomenology.

<b>Results:</b> Four key themes emerged, illustrating the complexities of long-term care planning during the pandemic: 1) a sense of isolation and burden in navigating future planning alone, 2) difficulties in accessing and coordinating appropriate care services for their loved ones, 3) heightened family tensions surrounding future caregiving responsibilities, and 4) increased anxiety and uncertainty regarding the long-term well-being of their loved ones.

<b>Conclusion:</b> This study provides valuable insights into the experiences of an often-overlooked population during a time of heightened vulnerability. Findings suggest a critical need for increased support for caregivers, including respited care options, accessible information hubs. Further research with a large sample size is recommended to enhance the generalizability of these findings.