Background:

Unpaid carers play a vital role in supporting older adults with dementia during hospital-to-home transitions, but often encounter unclear guidance, inconsistent information, and difficulties navigating health and care services. In an attempt to bridge the gap, many search online for information as a way to seek support, yet the usefulness and accessibility of this information remains unclear. This study aimed to explore carers’ experiences searching online for information, identifying availability, accessibility and relevance to carers.

Method:

Six carers followed a prompt to search online for information to support their needs when someone with dementia was being discharged home after an acute hospital stay. They extracted information into a reference framework, developed from UK statutory guidance on hospital discharge, and content analysis was conducted. Carers also reflected on their lived experiences through detailed narrative accounts and semi-structured interviews. Following a realist approach, data were analysed inductively and deductively to understand how online guidance might better meet carers’ needs.

Result:

Carers searched nine websites, including five national, three local charities, and one NHS. The amount and type of information varied considerably. From the included webpages, five organisations defined ‘hospital discharge’. Most webpages provided information in the domain discharge planning (n=66 excerpts), but rarely on deciding responsibility for care (n=7). Information about support/advice for after leaving hospital appeared on several webpages (n=58), largely focused on signposting (n=15, with fewest references to support for carers (n=8). Communication and information sharing was the least addressed domain (n =31), with few references about sharing information with carers (n=4). Data frequently described a mismatch between website content (e.g., references to case managers or information provision) and lived experiences. Carers felt the guidance did not adequately support their needs. Many were unaware of carers’ rights or available community support. There was a need for clear, segmented information explaining hospital admission and discharge processes, improved website navigation, and content more empathetic to carers’ needs.

Conclusion:

This participatory, co-design study identified substantial gaps between online information and carers’ lived experiences. Co-produced, clearly structured, and accessible, online information is needed to better support unpaid carers during hospital-to-home transitions.