| Literature DB >> 31518272 |
Amadea Turk1, Emma Fairclough1, Gillian Grason Smith2, Benjamin Lond1, Veronica Nanton1, Jeremy Dale1.
Abstract
BACKGROUND: Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers' resilience. It aims to provide personalized access to information and resources that are responsive to individuals' caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation.Entities:
Keywords: caregivers; information technology; internet
Year: 2019 PMID: 31518272 PMCID: PMC6816311 DOI: 10.2196/13875
Source DB: PubMed Journal: JMIR Aging ISSN: 2561-7605
Figure 1The Care Companion intervention framework.
Figure 2Features of Care Companion: home screen (top) and demonstration of the guided walkthrough available on the site (bottom).
Figure 3Features of Care Companion: resources.
Figure 4Features of Care Companion: journal.
Figure 5Features of Care Companion: address book, populated with pre-existing contacts of local support groups and with functionality to add own entries.
Demonstrating rigor in exploring the usefulness and ease of use of Care Companion.
| Criteria | Definition of criterion | Examples of how criterion is addressed |
| Credibility | The confidence in the truth of the research findings. Credible and plausible research findings must be drawn from the participants’ original data and need to be correct interpretations of these data. |
Trusting relationships between participants and the research team may increase participants’ willingness to share their experiences. A number of steps were taken to build trust: Relationships between the research team and the support groups were developed through past exchange of emails and telephone conversations; The team made use of the Medical School, National Health Service, local authority, and Age UK logos on all communications about the study and on the platform; Furthermore, leading (and trusted) members of the support groups helped arrange focus groups and thus facilitated recruitment; During the focus groups and interviews, the researcher discussed the importance of supporting informal carers, expressing compassion and empathy for those in caring roles Findings from the interviews and focus groups were shared and discussed with the study’s panel of carers that helped verify the findings. Member checking occurred with 1 participant who was interested in being involved in the project long-term. All findings from the study were shared and discussed with its carer advisory panel Data were collected through a variety of methods from people with a range of caring experience. Data analysis was discussed among the members of the research team. These steps aided triangulation Participants were invited to remain engaged by continuing their use of the Care Companion and provided with contact details should they wish to share more feedback with the research team. Some were invited to being involved through membership of the study’s carer panel |
| Confirmability | The extent to which findings can be confirmed to be real. The extent to which it can be shown that the interpretation of the findings is clearly derived from the data. |
Interviews were audio recorded and transcribed verbatim. Transcripts were stored securely on protected computers Notes were taken during focus group discussions and think-aloud interviews An audit trail capturing participant interest, data collection, and the research path was kept Data analysis was conducted in NVivo Direct quotations are used to illustrate the findings and to show that the findings represent the gathered data and are not biased by researchers |
| Dependability | Establishes whether the study's findings are consistent and repeatable |
An audit trail was established describing the study's procedures and progress, including changes that needed to be made during the study |
| Transferability | The extent to which the findings can be applied to other contexts |
The study used purposeful sampling Notes were kept by the researchers during data collection. Researchers were reflexive about their potential impact on the data collection process and other contextual factors |
Summary of participants in user acceptability testing.
| Identifier | Recruitment strategy | Gender | Participants, n | Details about caring responsibilities | ||
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| P1-1 | Rural café for supporting older people and their carers | Female | 1 | Lived separately from person needing care |
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| P1-2 | Rural café for supporting older people and their carers | Female | 1 | Lived with person needing care |
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| P1-3 | Rural café for supporting older people and their carers | Male | 1 | Lived with person needing care |
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| P1-4 | Rural café for supporting older people and their carers | Female | 1 | Lived with person needing care |
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| FG 1 | Rural café for supporting older people and their carers | 3 females | 3 | All 3 participants were carers for somebody they lived with (parent or spouse). |
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| FG 2 | Local Parkinson disease charity | Large group — mixture of males and females | 37 | The group was a mixture of people in care and their carers |
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| FG 3 | Local Parkinson disease charity | 3 males and 4 females | 7 | The group was predominantly made up of carers, 1 participant identified as caring for himself |
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| FG 4 | South Asian carer network | 1 male and 2 females | 3 | All lived with person needing care |
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| P2-1 | Referred by carer panel member | Male | 1 | Living with and caring for spouse for 2 years at the time of the interview |
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| P2-2 | Rural café for supporting older people and their carers | Female | 1 | Caring for 4 years, providing daily care at the time of the interview |
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| P2-3 | Recruited through invitation sent to dementia support group | Male | 1 | Living with and caring for spouse for 4 months at the time of the interview |
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| P2-4 | Rural café for supporting older people and their carers | Female | 1 | Living with and caring for parent for 7 months at the time of the interview |
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| P2-5 | Local Parkinson disease charity | Female | 1 | Living with and caring for spouse for 6 years at the time of the interview |
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| P2-6 | Local Parkinson disease charity | Male | 1 | Living with a condition, care for self and support their carer to care for them |
Summary of suggestions for improvement of Care Companion.
| Feature | Suggested improvement |
| Journal | Add tagging options or subsections that allow users to categorize their entries, and thus enable easier retrieval of information; Improve the ability to search for entries by displaying a calendar; Add the ability to enter events that will occur in the future |
| Mood monitor | Increase the number of “moods” available, in particular a “stressed” option |
| Address book | Enhance the personalization of relevant contacts. (In its test format, the contacts list was not as profile-driven as the resources) |
| Resources | Inclusion of additional links in the resources section to websites that they knew about and thought might be valuable to others |
| Profile questions | Inclusion of additional profile questions to drive further personalization, such as age categories |
| Search functionality | In earlier stages of development, the platform’s searching function was limited and often had errors |