The present study ventured the investigation and identification of both formal and informal caregivers’ profiles through the process of personas’ development. As most studies so far have focused on exploring informal caregivers’ reality and daily living [33], this study attempted to fill a gap by attempting to conceptualize both formal and informal caregivers’ needs and outline their profiles. Our findings bring a different perspective following a UCD approach to tackle adversities with regards to formal and informal caregivers’ burn-out syndrome and psychological burden.
Upon the analysis of the Persona Perception Scale, findings revealed high reliability scores, indicating that the formal caregiver persona could adequately represent the actual user target group. In particular, participants with higher educational levels were more willing to exploit the formal caregiver persona. This is in line with the findings from literature [23], demonstrating that user personas were developed, in order to gain a deeper understanding of the user target group and apprehend user expectations, experiences and anticipated behaviors beyond demographics, and, therefore, build empathy patterns among end-users. User personas offer the potential to ‘’humanize’’ and replace quantitative data with people-based data reflections that individuals inherently empathize with [34]. More specifically, articulate personas form useful, rounded and realistic representations of the underlying target group that exist in real life and provide empathetic and expansive benefits [35].
In addition, participants with higher job anxiety appeared to reflect greater resemblance with the persona and those with greater scores of time stress revealed higher scores of empathy and similarity with the persona. In accordance with these results, the formal caregiver persona ‘’Daphne’’ was presented as a highly stressed individual, due to the extreme workload, long shifts and other factors related to job stress and burnout syndrome. Our findings suggest that participants strongly related with the persona outline, indicating that the persona resembled participants’ stressful reality deriving from their everyday job related experiences and circumstances. Therefore, in the present study, participants highly empathized with ‘’Daphne’’, emulating the key behavioural patterns, experiences, habits, concerns, interests and needs, which derive from their reality and everyday living.
In continuation to the aforementioned findings, the informal caregiver persona’s profile was also outlined, aiming to address informal caregivers’ moderate quality of life and moderate to severe psychological burden. Results analysis showed that parameters including caregivers’ age, relationship with patients, education, job status, duration of assisting and supporting patients strongly influence the lifestyle of the informal caregiver. Furthermore, the psychological burden and quality of life of informal caregivers were higher in females, while general health status was better in males. These findings are in accordance with the results from a meta-analysis conducted in the United Kingdom [36], which involved British, German, and Polish caregivers of Alzheimer's disease patients with an average age of 50–60 years, through the exploitation of the same research evaluation measures, revealed that informal caregivers’ poor sleep quality, high rates of depression along with heart and metabolic diseases. Additionally, our results indicate that there is no significant difference in the degree of burden and quality of life between informal caregivers, who sought support from a healthcare professional and those who did not. Lastly, most of the informal caregivers acknowledged that their family income was decreased, since the onset of the patient’s chronic disease occurred and highlighted that the monthly cost of providing medications and treatments was a high expenditure. These findings are in accordance with another study [37] and confirmed by the informal caregiver persona ‘’Elle’’.
Potential limitations of the study relate to the recruitment and retention of informal older adults’ caregivers in research studies, which is often a complex and challenging process that requires careful and adequate planning of necessary steps for recruitment and consideration of the essential resources. Additionally, further limitations refer to the low levels of digital literacy detected among older adults living in Greek regional locations and the lack of anterior familiarization with the venture of personas’ design and development. Furthermore, to comply with pandemic-related containment measures during COVID-19 pandemic, data collection methods were adapted to these unique circumstances. Therefore, a focus group with formal caregivers was conducted online and a limited sample size was detected with regards to the informal caregivers’ participation in the conduction of interviews.
Future directions may focus on multicomponent technology-based interventions that offer a combination of different approaches such as psychoeducation, supportive approaches, and skills training in a cost-effective way. These interventions could act as an enhancement of efficiently alleviating caregivers’ psychological burden and burn-out syndrome among healthcare professionals [38]. This venture could be promoted by programs carried out in collaboration with local health units, local authorities and patient associations, which aim to help caregivers understand the disease, its symptoms and its progression and to acquire knowledge, skills and abilities that will not only help patients but will also lead to the improvement of their own well-being [39]. It is important to advocate integrated care, which incorporates the collaborative interaction of healthcare system stakeholders with informal caregivers, aiming to achieve person-centered medical and behavioral care among older adults with different needs [17]. Such activities will ease the way forward for a digitally enabled, integrated, and person-centred healthcare, elements of which are currently studied within a Europe-wide joint action, called JADECARE [40]. Consequently, the promising benefits stemming from the exploitation of AT, promoting integrated care that focus on the sufficient communication among formal and informal caregivers and coherent transfer of essential information for the management of the patients’ disease.
Conclusions
The act of caregiving might generate a number of negative financial, social, psychological and health life consequences for the caregiver, which highly increase caregivers’ burden and, therefore, affect both caregivers’ and care recipients’ quality of life. It is important to identify the unique needs and concerns of formal and informal caregivers, in order to adequately outline their profile and meet their behavioural patterns, expectations and experiences. The efficient and adequate development of integrated assistive technologies and their implementation in the act of caregiving could act as an enhancer for improving caregivers’ overall quality of life. Essential insights on healthcare providers’ and informal caregivers’ health and well-being are outlined in the two developed user personas that can be exploited as artifacts to promote effective and sufficient public health policies, key strategies and practices and successfully liaise with local agencies, policy-makers and care providers, in an effort to ultimately improve quality of life for both care recipients and caregivers.