Navigating a New Normal: A Qualitative Look at Long-Term Care Planning for Children with Intellectual Disabilities...

Area of Science:

• Disability Studies
• Public Health
• Caregiver Support

Background:

• Family caregivers of individuals with intellectual disabilities (ID) encounter substantial obstacles in long-term planning.
• The COVID-19 pandemic has intensified these challenges, highlighting the need for future care strategies.
• Emotional barriers and caregiver exhaustion frequently hinder proactive planning.

Purpose of the Study:

• To explore the perspectives of Hong Kong (HK) caregivers regarding long-term planning for family members with ID.
• To understand the impact of the COVID-19 pandemic on future caregiving considerations for individuals with ID.
• To identify specific challenges and needs of caregivers during the later stages of the pandemic.

Main Methods:

• A qualitative phenomenological approach was employed.
• In-depth interviews were conducted with 12 purposively sampled HK caregivers of adults with ID.
• Colaizzi's method was used for data analysis.

Main Results:

• Four prominent themes emerged: caregivers planning alone, the burden of arranging care, family tensions during planning, and the pandemic exacerbating worries.
• Caregivers reported feelings of isolation and significant emotional strain.
• The pandemic heightened anxieties about future care arrangements and support systems.

Conclusions:

• Caregivers require urgent encouragement and support from policymakers and professionals for long-term planning.
• Implications include addressing caregiver concerns, facilitating gradual planning, increasing respite care, and improving discussions on residential care options.
• This study offers critical insights into the experiences of an often-overlooked population during a global crisis.