Accepted for/Published in: JMIR mHealth and uHealth
Date Submitted: Nov 8, 2019
Open Peer Review Period: Nov 8, 2019 - Jan 3, 2020
Date Accepted: May 14, 2020
Date Submitted to PubMed: May 15, 2020
(closed for review but you can still tweet)
SUpport for older adultS to STAy INdependent at home (SUSTAIN): a qualitative study for improving an online tool
Older adults desire to stay independent at home for as long as possible. We developed an interactive website that informed older adults and caregivers about ways to achieve this. In preparation for scaling up, the website needed modifying to better meet the needs of its target population.
We aimed to consult potential end-users (older adults and caregivers) about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home.
We conducted a qualitative descriptive study. Using multiple recruitment strategies, we enrolled a purposeful sample of older adults 65+ and caregivers of older adults struggling to stay independent at home. Older adults were eligible to participate if they were 65+ years old and cognitively capable of indicating their informed consent to participate. Formal or informal caregivers were eligible if they cared for an older adult struggling to remain independent at home. Both older adults and caregivers had to be available to consult the existing website before the interview. We conducted face-to-face or telephone interviews, in either English or French, which were audio-recorded and transcribed verbatim. Interviews were thematically analyzed. We collected three kinds of information: sociodemographic characteristics, other characteristics of participants (e.g. health, digital profile, perception of retirement homes), and experience of the website (factors facilitating their use of the website, barriers to its use, and proposals for its improvement).
We recruited 15 participants, including 5 older adults and 10 caregivers from eastern Canada (n=9), western Canada (n=4) and France (n=2). Most older adults (n=9) were women, around 75 years old, educated, and living at home. Most caregivers were women (n=6), around 57 years old, highly educated (n=10), and informal caregivers (n=9) taking care of a parent (n=8). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for getting information. However, participants found barriers related to navigation, relevance, realism, understandability, comprehensiveness and accessibility. Their proposals for improvement included: a needs assessment section to direct users to support appropriate to their needs; information relevant to moving into residential care; a section for caregivers; distinction between state-provided and private support services; simpler language; expansion of content to be relevant to all of Canada; and video subtitles for the hearing-impaired.
Users provided a wealth of information on the needs of older adults facing loss of autonomy and on what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that eHealth innovations such as this need to address. After integrating the changes suggested, a scalability assessment could be performed to prepare it for expansion to more regions.
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