Navigating a new normal: A qualitative look at long-term care planning for children with intellectual disabilities post-COVID-19

Abstract

Background: Family caregivers of individuals with intellectual disabilities (ID) face numerous challenges in long-term planning, which have been exacerbated amidst the COVID-19 pandemic. Specific triggers raise awareness of future planning needs, but barriers like painful emotions and exhaustion often impede the process. This study aimed to explore Hong Kong (HK) caregivers’ perspectives on long-term planning for family members with ID at the later period of the pandemic. Methods: A qualitative phenomenological approach was utilized. In-depth interviews regarding experiences with long-term care preparation during COVID-19 were conducted with 12 purposively sampled HK caregivers of adults with ID. Data were analyzed using Colaizzi’s method. Results: Four key themes emerged: planning a loved one’s future alone, the burden of arranging care for disabled loved ones, planning a child’s future care amid family tensions, and the pandemic worsening future caregiving worries. Conclusion: Caregivers urgently require encouragement and support from policymakers and professionals to build confidence in long-term strategy and access robust assistance. Implications include identifying caregiver concerns, aiding gradual planning implementation, increasing respite options, and facilitating discussions regarding future residential care homes. This study provides initial valuable insights into an overlooked population during an unprecedented crisis.