Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool: a mixed-method study

Abstract

Abstract Background Young adult caregivers (YACs, aged 18–25) who take care of a loved one may juggle between caregiving responsibilities and other life areas such as education and social life, leading to an imbalance in their lives. The web-based tool ‘MantelzorgBalans’ aims to support informal caregivers (ICGs) in balancing caregiving tasks and activities in other life areas. However, this tool was designed to support ICGs of loved ones receiving palliative care and is not yet tailored to the needs of YACs. In order to do so, in this study we aim to explore (i) challenges and support needs of YACs in caregiving, (ii) their needs towards the content of the ‘MantelzorgBalans’ tool, and (iii) issues they encountered in using the tool and their preferences for adaptation of the tool. Method We conducted semi-structured interviews and usability testing with 13 student YACs in the Netherlands. Within usability testing, we used three approaches: (i) a thinking-aloud approach (verbalizing thoughts while using the tool), (ii) a task-based performance approach (scoring task completion rate), and (iii) questionnaires. We used thematic analysis to synthesize the qualitative data. For the quantitative data, we calculated frequencies and mean scores. Results Our findings suggest that the majority of YACs faced challenges in balancing caregiving with life areas such as education and social life. They needed support from healthcare professionals who could listen to them without judging them. With respect to the MantelzorgBalans tool, YACs needed more information on how to provide emotional support to their loved one and the emotional support that is available for them. In regards to the aesthetics, they preferred bright colours and more visuals in the tool. Overall, they were satisfied with the information presented in the tool, but they were neutral in their willingness to use it in the future. Conclusion From this study, we learn that YACs may experience specific challenges and needs in general, and towards a web-based tool in specific. In the near future, it will be important to develop digital tools to support YACs that match their specific needs. This may enable healthcare professionals to offer targeted and personalized digital support to YACs in future.