Participant characteristics
Ninety potential participants were contacted for the study and 15 care-recipients and their caregivers agreed to participate. Due to health and transportation problems, one care-recipient and three caregivers were unable to participate. The mean age for care recipients was 76 (standard deviation (sd) = 7). Most were Caucasian (71%), female (64%), and reported being in good or better health (43%). Similarly, caregivers were mostly Caucasian (75%) and female (67%), with a mean age of 68 (sd = 8). Assistance provided by caregivers included cooking, shopping, physical support (e.g. walking), household chores and driving to doctors’ visits. Additional participant characteristics are provided in Table 1. Medical providers were mostly female, nurse practitioners, registered nurses, or licensed practical nurses (n = 6), followed by physical and occupational therapists and support staff (n = 5), and geriatricians (n = 3). All were involved with the care of older adults.
Participant characteristics
Item
|
Care Recipient
|
Caregiver
|
|
Overall
n=14
|
Non Frail/Pre-frail
n=8
|
Frail
n=6
|
n=12
|
Age: mean (sd)
|
76.1 (6.5)
|
73.9 (5.5)
|
79.2 (6.9)
|
68.2 (8.0)
|
Gender: % female
|
64.3%
|
62.5%
|
66.7%
|
66.7%
|
Race: % Caucasian
|
71.4%
|
80%
|
20%
|
75%
|
Education: %
|
|
|
|
|
High School/Equivalent
|
21.4%
|
25.0%
|
16.7%
|
41.7%
|
College
|
28.6%
|
37.5%
|
16.7%
|
33.3%
|
Post graduate
|
50.0%
|
37.5%
|
66.7%
|
25.0%
|
Living Status: %
|
|
|
|
66.7%#
|
Alone
|
35.7%
|
12.5%
|
66.7%
|
|
Spouse/partner
|
50.0%
|
62.5%
|
33.3%
|
|
Son/daughter(s)
|
14.3%
|
25.0%
|
0%
|
|
Care Recipient Health Status: %
|
|
|
|
|
Excellent
|
14.3%
|
25.0%
|
0%
|
8.3%
|
Very good
|
21.4%
|
37.5%
|
0%
|
25.0%
|
Good
|
42.9%
|
25.0%
|
66.7%
|
25.0%
|
Fair
|
0%
|
0%
|
0%
|
33.3%
|
Poor
|
21.4%
|
12.5%
|
33.3%
|
8.3%
|
#Living with care-recipient
Three key themes emerged from the focus groups common to all three types of participants, including perspectives on frailty, acceptance of home-based sensors, and data management concerns. A summary of theme contribution by type of participant is provided in Table 2.
1. Perspectives on frailty
Generally, focus group participants (care recipients, caregivers, and providers) had similar perspectives and understanding of frailty as a decline in an older adult’s physical function over an extended period of time, as distinct from their level of physical ability (or disability). All three groups identified attributes of physical decline in frail older adults, as well as declines in their ability to recover or respond to life events.
Subtheme 1: Frailty is declining physical function, not disability
Care-recipients, caregivers, and providers all identified physical attributes of frailty in older adults including unintentional weight loss, loss of muscle mass and strength, loss of agility, loss of mobility, decreased gait speed, and loss of resiliency.
A frail care recipient noted that “I'm tired a lot in general, things like that. So I never really thought of myself as being frail to whatever that description and it's like, oh, no, that's me…”
A provider defined a frail individual as“… someone who's lost weight and is just very, very thin; in the physical context would be, you know, people thin, weaker, things like that” whereas an example of a disabled person is “an athlete who's in a wheelchair who plays basketball, that person's disabled but certainly far from my imagination of being frail.”
Subtheme 2: Knowing Frailty Status Is Important and Useful
Caregivers and care-recipients both felt that knowing the older adult’s frailty status would facilitate making lifestyle and home life changes, such as making plans about how to handle their declining health. For care-recipients and caregivers, this meant changes in lifestyle and avoidance of risky behaviors and situations. As explained by a care recipient, knowledge of their frailty status could mean: “[c]hang[ing] your lifestyle, adapt to -if you have – if you live in a house with lots of stairs maybe move to a one-floor house or something … lowering the risk[s] that come with frailty.”
There was a consensus among participants that safety and harm reduction are important factors for appropriately managing frailty, although their perspectives were somewhat different based on their different roles. Providers indicated that knowing a patient’s frailty status was useful in developing an appropriate treatment plan and in making care decisions that affect quality of life, as well as reducing the negative consequences associated with treatment. For example, one provider explained “harm reduction … becomes really important, too. So whether that [would] be … watching whatever medications we’re prescribing or making sure they have appropriate equipment [so] that if they fall they don’t hurt themselves.”
2. Perceptions of Home-Based Sensors
Providers, care recipients, and caregivers expressed both positive and negative views of home-based sensors.
Subtheme 1: Benefits of Home-Based Sensors
Providers, care-recipients and caregivers felt that sensors would be useful to provide objective data and would be helpful and cost-effective way to track changes associated with frailty and declining health. They also anticipated that sensors could reduce health-care costs, which would be good for the patient, caregiver and provider, and would enhance the independence of older adults. As one care recipient stated, “the reason this is being done is that it saves … money. … So the more independent we are the happier everybody is, and the cheaper it is for everybody else.” A provider indicated that home sensors could be useful because “sometimes we'll admit people to facilities to see if they're having behaviors or, you know, they'll describe being up all night going to the bathroom.”
Subtheme 2: Concerns about Home-Based Sensors
Providers identified concerns about affordability and access for some of their patients. As one provider explained, “If it involves an Internet connection, a number of our participants do not have Internet and can't afford it. “A main concern for care recipients was care quality rather than access. Care recipients worried that the use of sensors would tend to replace or reduce in-person visits. One care recipient stated “My concern about these kinds of systems are “that you don't lose the personal contact.” Caregivers focused on the potential for loss of autonomy of care recipients. One caregiver stated that “…it sounds like big brother looking at you.”
3. Data Management Concerns
Care-recipients, caregivers, and providers shared concerns about the large volume of data generated and whether the data could be interpreted and reported in a timely and useful manner. Additionally, providers had unique concerns regarding responsibility for data administration and reporting (including to whom the data would be reported), and how such data could be useful in preparing overall care plans for older adults.
Subtheme 1: Concerns about data interpretation, reporting and responsibility
Care-recipients and caregivers had common concerns about the large volume of data generated, and whether that amount of data could be interpreted in a timely and useful manner. As one care-recipient asked: “… aren’t physicians already totally overwhelmed?”
Providers were focused on how the sensor data would be collected and reported. As one provider asked “… would there be a way to easily pull it or, you know, present it in a meaningful way to the team?” Providers had related concerns regarding who would be responsible for collecting and managing all of the information provided by sensors: “Well I don't know who's going to be responsible for getting all of that information and then figuring out who that gets reported to and how … ”
Subtheme 2: Data security
Care-recipients, caregivers, and providers had concerns regarding data security, and how the data would be transmitted. Older adults and caregivers felt that digital data is vulnerable to hacking and release to the public. They expressed specific concerns about particular kinds of sensitive information. A caregiver stated, “as long as it doesn't have my social security number on it, I don't care.” This suggests that data security should be an important concern in developing sensor technology, and that extra care be taken to protect particular kinds of information such as social security numbers, lab results, or other information that can be abused.
Table 2
Theme contribution by type of participant
Themes
|
Non-Frail (N=10)
|
Pre-Frail (N=9)
|
Frail (N=7)
|
|
|
CR (N=5)
|
CG (N=5)
|
CR (N=5)
|
CG (N=4)
|
CR (N=4)
|
CG (N=3)
|
Providers (N=14)
|
Theme 1: Perspectives on frailty
|
Subtheme 1: Frailty is declining physical function, not disability
|
80% (4)
|
60% (3)
|
40% (2)
|
75% (3)
|
100% (4)
|
100% (3)
|
79% (11)
|
Subtheme 2: Knowing Frailty Status Is Important and Useful
|
60% (3)
|
100% (5)
|
80% (4)
|
100% (4)
|
75% (3)
|
67% (2)
|
64% (9)
|
Theme 2: Perceptions of Home-Based Sensors
|
Subtheme 1: Benefits of Home-Based Sensors
|
60% (3)
|
60% (3)
|
40% (2)
|
100% (4)
|
100% (4)
|
67% (2)
|
57% (8)
|
Subtheme 2: Concerns about Home-Based Sensors
|
60% (3)
|
80% (4)
|
80% (4)
|
75% (3)
|
75% (3)
|
67% (2)
|
50% (7)
|
Theme 3: Data Management Concerns
|
Subtheme 1: Concerns about data interpretation, reporting and responsibility
|
60% (3)
|
40% (2)
|
80% (4)
|
75% (3)
|
75% (3)
|
100% (3)
|
50% (7)
|
Subtheme 2: Data security
|
40% (2)
|
60% (3)
|
80% (4)
|
50% (2)
|
75% (3)
|
67% (2)
|
36% (5)
|
CR: Care Recipient; CG: Caregiver