Carers Milton Keynes

Perspective of carers on the role of activity trackers in their caring role

Photos from one of our project's workshops with carers, manufacturers of activity trackers and related apps, researchers, and colleagues from Age UK Milton Keynes (photos taken by Dr Duncan Banks, The Open University, UK)

Blog-author

Dr. Ana-Despina Tudor on behalf of the project team.

Project details

In our digital health wearables research programme funded by Sir Halley Stewart Trust and the ESRC Impact Acceleration Award, we have been investigating the role of wearable activity monitoring technologies in the health and well-being of people - aged 55 years and over, carers, and the people being cared for.

Example technologies include activity trackers from Fitbit, Garmin and Samsung, and smart watches. Typically, these devices record steps walked, floors climbed, sleep patterns, calories expended and heart rate.

Carers and people being cared for

We have conducted a survey with 38 carers and interviewed ten carers who had participated in the survey and had agreed to be interviewed.

Interviews with carers

Three of the carers we have interviewed are between 45-54, three are between 55-64, four are between 65-74 and one was above 85 years old. Eight out of 10 are female. The ages of the people they care for range from 18 years old to 86.

All the carers that we interviewed were family carers who care part-time for family members- in the evenings/night, or live in the neighbourhood, or visit the family member who they are caring for every day or over the weekend.

Four carers care for their partners (86, 60, 65 and 70 years old), six carers care for family members – one carer looks after his father (89 years old), two carers look for their mother (75 and 86 respectively), and three carers look after their children (18, 22, and 40 years old).

The medical conditions of the persons being cared for ranges from post-stroke patients, to chronic conditions, such as ME and Alzheimer’s.

In the interviews, carers discussed:

  • how they would integrate activity trackers in their caring activities; and
  • their expectations from these devices.

Results

For each of the themes from our data, we have included some quotes from the carers.

Being informed about the well-being of the person they care for

Carers would like that the person they care for wears an activity tracker which informs carers about the status of the wearer. For instance, they would like to know about the well-being of the person they care for when they are not around or to know if the person being cared for is generally active during the day.

“I think to see that she's moving around would be helpful. Because I'm always worried, when I'm not in the house with her, that if something had happened to her, I might not know. So, I could see if she was in bed and didn't get up.” [part-time carer who cares for her mother]

Further carers are interested to know if the tracker recorded that the person they care for had a good night sleep, if the tracker recorded that their vital signs are within the normal range.

“It would also be useful to see his sleep patterns, because I know his medication affects his sleep quite a lot.” [part-time carer who cares for her son]

Being informed in case of emergency, if something happens to the person they care for

Many carers shared their concerns of knowing what happens to the person they care for when they are not around. They believe that a way to monitor remotely the well-being of the person they care for is to receive alerts in case of emergency: such as if the person they care for is having a heart-related problem, gets lost (in case of dementia) or is unable to move after a fall:

“If things go outside of those [set] parameters, like his heart rate drops below a certain level, or his temperature drops below a certain level, or he has been inactive for a set amount of time then I would get a call saying, “Check on Dad”. That’s the sort of alert I would need.” [part-time carer who cares for his father and lives in the neighbouhood]

In some cases, carers would also like activity trackers to be able to record the mood of the person being cared for and be alerted in case the mood is very low, so that they can contact them during the day.

“I guess I might want it to alert me, you know, if he had a really frowny face, you know, I might want an alert to that” [part-time carer who cares for her husband]

Data sharing with medical professionals

One aspect that has come in all our conversations with carers is having access to the data recorded by the activity tracker worn by the people they care for. Carers would like to be able to inform medical professionals on the general health status of the people they care for, in between visits.

One such example comes from a carer who would like to use the monitored sleep patterns to inform the medical professionals about how medication affects the sleep of her son. In this case, the data could serve as an “objective proof” of how a certain treatment is working for the person being cared for:

“A particular drug affects his sleep at the moment. I would like to suggest to his consultant that they reduce it, or change it. This would help to show what his sleep pattern is like on that drug.” [part-time carer who cares for her son]

Data sharing brings ethical concerns: carers mentioned that they will need to ask for permission from the persons they care for to view their recorded data, and to be able to share it with the medical professionals, if required. 

Concerns of carers 

Among the concerns expressed by carers is that the people being cared for might feel demotivated to use the device if their well-being is not improving or if they don’t see any visible progress in their condition.

Other concerns were forgetting to wear the tracker, ease of charging it, of putting the strap on for older people and their understanding of the device and the data.

Project team

Academics: Dr. Duncan Banks (OU), Dr. Kate Hamblin (Oxford University) Dr. Caroline Holland (OU), Dr. George Leeson (Oxford University) Ms. Catherine McNulty (OU), Professor Shailey Minocha (OU) and Dr. Ana-Despina Tudor (OU)

Collaborators: Age UK MK (Jane Palmer), Carers MK (Sue Bowering and Robert Benn) and Samsung UK (Rohit Ail and Qian Shen)

Research Managers: Louise Thomas (OU) and Katia Padvalkava (Oxford University)

Wearable Activity Trackers for Carers and those they care for

Photos from the workshop at Carers Milton Keynes offices in Central Milton Keynes (photos taken by Dr. Duncan Banks), February 2017

Wearable activity trackers (e.g. wrist-bands from Fitbit or Jawbone, or smart watches from Apple or Samsung), track daily fitness levels such as heart rate, sleep patterns, or calories expended. We have been exploring the potential of this kind of device for carers and the people they care for.

Project details

As a part of a project funded by the Sir Halley Stewart Trust, The Open University has worked with Carers MK (Milton Keynes) to run a survey and subsequently a workshop with some of the participants from the survey. Our aim was to ask the opinions of carers about using digital health wearables (whether or not they already use them). Their inputs will help us to understand whether and how wearables could be effectively used if they became a part of healthcare: caring, monitoring and self-management of health.

Observations from the data

From a preliminary analysis of the data we have made some initial observations:

For carers: Carers may not sleep well or may not get the chance to go out for a walk or a run, but may not realise that they haven’t had a lot of physical activity during the day. Walking has been shown to improve mental performance and reduce cognitive decline as we age, and our previous research showed that walking with others can help reduce social isolation and loneliness. Carers in this study said they would find devices useful to monitor their own health and activity – specifically, their sleep patterns and level of activity.

For people they care for: Carers felt that activity monitors could also be useful for the people that they care for. In the survey, carers mentioned interest in data about the person they cared for including: sleep patterns, calories expended, a map of the area walked and distance and steps walked, activity data over a period of time, heart rate, UV exposure, data that shows some movement has taken place, and warning that a condition is deteriorating for some reason. A carer in the workshop mentioned concern about monitoring the weight of her daughter because of her health condition. 

The carers felt that people who are being cared for could feel in control of their health and well-being through using such devices to monitor: exercise levels, dietary needs, sleep patterns, reminders for medications, and reminders to move. They might also get a sense of safety and confidence from being able to track the whereabouts of their carer; and a sense of security (‘security knowing that [their] condition was monitored for deterioration so that they didn’t have to remember or make contact’).

Caring or monitoring at a distance: Carers discussed the advantage of being able to monitor well-being from a distance, e.g. if they don’t live together, if the carer or the person being cared for has gone out for an errand or a walk - ‘to monitor health in a low-key way that is not intrusive and give them independence to cope when they are doing well’.

Concerns about these devices: However, carers expressed concerns about the use of such devices. These devices seldom cater for accessibility and age-related impairments, such as those associated with memory, vision, dexterity. They generally require interfacing with Tablets or smart-phones for transfer and display of data and some need charging every day. So, there are technical requirements and usability barriers for optimal use of these devices. Carers were also concerned about the people being cared for and themselves not knowing how to make sense of the data from these devices – and whether this data may ‘create confusion and unnecessary worry’

Carers were concerned that if the person being cared for is very old, there might be issues about their ability to use such devices, to remember to wear them and to make use of them for self-monitoring. Motivation to use a wearable might be a problem.

The data from these devices, although not always accurate, provides useful trends on the activity levels and sleep patterns which may influence people to change their life styles. The data collected over a period of time may provide useful insights to healthcare professionals.

Participation in the survey

If you are a carer and are interested in contributing to this research, please visit this link https://www.surveymonkey.co.uk/r/health-wearables-for-the-person-being-cared-for or http://bit.ly/2iN4YSd to participate in this survey. The survey will take 6-8 minutes to complete.

The university’s Human Research Ethics Committee has approved this research. If you have any questions about the project or the survey, please contact Professor Shailey Minocha: shailey.minocha@open.ac.uk

Contributors to this strand of research on carers

Mrs. Sue Bowering and Mr. Robert Benn, Carers MK (Milton Keynes)

Professor Shailey Minocha, Dr Caroline Holland, Dr Duncan Banks, Ms. Catherine McNulty and Dr. Ana-Despina Tudor, The Open University, UK

This project (May 2016 - April 2017) has been funded by the Sir Halley Stewart Trust. The views expressed in this article are those of the project team and not necessarily those of the Trust.