Quality of Life for Carers Through a Person-Centred Technological Solution
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Informal Caregivers
- Sponsor
- Universidade da Coruña
- Enrollment
- 62
- Locations
- 1
- Primary Endpoint
- Change in care-related QoL from baseline to post-intervention
- Status
- Completed
- Last Updated
- last year
Overview
Brief Summary
This study is entitled Quality of Life for Carers through a Person-Centred Technological Solution, whose acronym is TechQoL4Carers.
The goal of this pilot study is to develop an innovative technological solution (TechQoL4Carers) to improve the Quality of Life (QoL), occupational balance, impact of care, self-management of health, and empowerment of informal caregivers of older people or people with disability. The main question it aims to answer is: Will the routine use of TechQoL4Carers platform have a positive impact on the daily life of informal caregivers? The study will examine these variables in a specific way: QoL, impact of care and burden, occupational balance, health self-management, and empowerment.
Informal caregivers will participate in a participatory process of development, testing and validation of the technological platform TechQoL4Carers. At the beginning and end of the study, participants will be asked to answer questionnaires to capture their perspective on the central variables of the study and on the utility and usability of the technology. Then, for three months, participants will:
- use TechQoL4Carers platform on their mobile phone or computer,
- wear the Xiaomi Smart Band 7/8,
- provide weekly reports of health and care related quality of life,
- and receive personalized recommendations and training materials.
At the end, they will also participate in an in-depth interview on the impact of the project on their daily activities.
Detailed Description
The project was submitted to the 2021 Call for Strategic Projects oriented to the Ecological and Digital Transition of the Spanish Ministry of Science and Innovation, of the State Plan for Scientific, Technical and Innovation Research 2021-2023, which, in turn, is part of the National Recovery, Transformation and Resilience Plan, with funding from Next Generation funds of the European Union. The technological solution will offer training contents for informal caregivers, which will enable them to increase their knowledge and acquire new skills, including digital ones, so that this proposal will also contribute to the promotion of education, lifelong learning and skills development. In this way, the TechQoL4Carers project will break the digital divide and promote digital inclusion, through an inclusive and sustainable service that put people at the centre. The social challenge to which the project responds is the QoL of caregivers. In Spain, 15.3% of the population is in an informal caregiver role. The latest data from 2020 show that 53% of Spanish informal caregivers spend 20 hours or more per week caring, represented by women (58%) and aged between 45 and 64 years (52%). The impact of informal care on people's everyday life is double sided: on the one hand, there is evidence of positive aspects, but on the other hand, negative aspects are reflected on different levels (mental, physical, economic and social). This situation has aggravated due to the global COVID-19 pandemic. Nowadays, health, social and care systems for informal caregivers are needed from a person-centred perspective to promote their health, QoL and empowerment. Technology is a promising tool to provide personalised services for active participation in these processes. TechQoL4Carers is based on a person-centred development, participatory design techniques and an iterative procedure to obtain the final version of the platform. This platform will consist of a website, interconnected with a mobile application and wearable devices, which will offer a set of personalised services that will allow end users to collect and monitor data on their own QoL, occupational balance and healthy lifestyle; to receive personalised warnings; and to access e-training content as additional support in their care tasks and in their own self-care. It is structured in 7 Work Packages (WP), aligned with the objectives and developed in specific tasks and deliverables. Three main research stages are highlighted: analysis of evidence and definition of requirements (WP1 and WP2); development of the platform and its integration with wearable devices, artificial intelligence and cybersecurity (WP3 and WP4); and validation of the platform and knowledge generation (WP5 and WP6). For the design, testing and validation of the platform (WP5) a pilot study will be conducted following a mixed methodology (quantitative and qualitative). Questionnaires and interviews as well as testing of the platform will be conducted with informal caregivers in order to obtain a final product that considers the end-user in the whole process. These results are expected to have a scientific and social impact. Knowledge and evidence will be generated on how to improve the QoL of informal caregivers through technology, providing them with tools that will enable more efficient time management and occupational balance. This can indirectly improve the QoL and wellbeing of the people receiving their care (mainly, older people or people with disability).
Investigators
Betania Groba González
Associate Professor in Occupational Therapy-Nursing, PhD in Health Sciences
Universidade da Coruña
Eligibility Criteria
Inclusion Criteria
- •Be 18 years of age or older.
- •Perform the role of informal caregiver, being the main caregiver.
- •To be living with the person receiving the care.
- •Regularly use a smartphone.
- •Commit to using the activity wristband on a regular basis during the project development period.
Exclusion Criteria
- •Have been an informal caregiver for less than one year.
- •Be the main caregiver of more than one person in a situation of dependency.
- •Have modified legal capacity.
Outcomes
Primary Outcomes
Change in care-related QoL from baseline to post-intervention
Time Frame: Pre-Post: baseline and one-month post-intervention
Care-related QoL will be measured through the dimensions of the Care-related QoL instrument (CarerQol). The seven dimensions (CarerQol-7D) are fulfillment, relational, mental health, social, financial, perceived support, and physical dimension. They are scored on a Likert scale with three values (1 to 3) indicating the level of severity (no, some, and a lot). Score range: 7 to 21. Score interpretation: The higher the score on the dimensions, the worse the impact of care on the life of the caregiver.
Change in perceived well-being from baseline to post-intervention
Time Frame: Pre-Post: baseline and one-month post-intervention
Well-being related to care-related QoL will be measured through the visual analogue scale (VAS) of the Care-related QoL instrument (CarerQol). The CarerQol-VAS allows rating how happy the person feels at that moment as a measure of general well-being. This construct is scored on a range from 0 (completely unhappy) to 10 (completely happy). Score interpretation: The higher the score, the better the situation in terms of the impact of care.
Change in health-related Quality of Life from baseline to post-intervention
Time Frame: Pre-Post: baseline and one-month post-intervention
Health-related Quality of Life (QoL) will be measured through the self-administered tool EuroQol 5 dimensions 5 levels (EQ-5D-5L). Health state is obtained from the EQ-5D-5L, through its descriptive system with five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. The dimensions are scored on a 5-point Likert scale reflecting the level of severity (no problem, slight problems, moderate problems, severe problems, and extreme problems or unable to perform). The health profile or health state describes the level of severity that the person perceives in each dimension and it is represented through an individual code for each dimension scored between 1 and 5 or through a single five-digit code (ranging from 11111 to 55555).
Change in overall health from baseline to post-intervention
Time Frame: Pre-Post: baseline and one-month post-intervention
Health-related QoL will be measured through the self-administered tool EQ-5D-5L. Overall health is derived from a visual analogue scale (VAS) on perceived health, from 0 to 100. In this way, the person scores his or her health on a given day; assigning it a value between 0 (the worst health you can imagine) and 100 (the best health you can imagine).
Secondary Outcomes
- Change in caregiver burden from baseline to post-intervention(Pre-Post: baseline and one-month post-intervention)
- Change in caregiver strain from baseline to post-intervention(Pre-Post: baseline and one-month post-intervention)
- Meaning attributed to participation in the project(One month post-intervention)
- Change in sleep measured by the Xiaomi Smart Band during intervention(3 months wearing the Xiaomi Smart Band)
- TechQoL4Carers Satisfaction Questionnaire(One month post-intervention)
- Change in occupational balance from baseline to post-intervention(Pre-Post: baseline and one-month post-intervention)
- Change in physical activity measured by the Xiaomi Smart Band during intervention(3 months wearing the Xiaomi Smart Band)
- Change in perceived empowerment from baseline to post-intervention(Pre-Post: baseline and one-month post-intervention)
- Change in daily functioning measured by TechQoL4Carers platform during the intervention(Once a week during the intervention (three months))