The Psychological, Emotional, and Logistical Challenges Involved in Caring for Loved Ones and How to Reduce Burden Through Design
Today, medical research and innovations are allowing people to live much longer lives. Early diagnosis and the ability to manage chronic medical conditions from home are increasing the demand for effective, intuitive home health devices.
When applying human factors engineering to medical devices, all users who may come into contact with and/or use a device must be considered in the design process. An increase in home health devices can mean an increase in types of users, such as caregivers, who will be interacting with the device. With the growing population of non-professional caregivers in the United States (i.e., family or lay person), it is becoming important to engage this population in the early stages of the design process.
For example, a family caregiver who is responsible for administering medication to an adult dependent can be recruited to interact with the device and provide early feedback. This inclusion is critical to ensuring a device is safe, intuitive, and easy to use. It is also important to consider the psychological, emotional, and logistical challenges that caregivers encounter as part of the healthcare delivery process, and use those insights to develop better medical devices.
The Caregiving Population in the United States
Family caregivers are unpaid, non-medical professionals who care for a loved one or a dependent, as opposed to a professional caregiver, such as a licensed practical nurse hired to take care of a loved one’s primary medical needs in the home. The population of family caregivers is growing in the United States. An increasing number of individuals are providing full-time unpaid medical care to a loved one on a weekly basis, and these caregivers do not fall into a specific age-range. Some are younger and have their own commitments of going to school and raising a family, while others are entering retirement age and spending time with family or taking on their own endeavors. As of 2015, approximately 43.5 million adults had provided unpaid medical care to an adult or child over a year. Approximately 15.7 million caregivers of adults cared for someone who had Alzheimer’s disease or another form of dementia. (1) The average caregiver is 49 years old; 48% of caregivers are between the ages of 18 and 49, and 34% of caregivers are over 65 years of age. The average age of the person receiving this care is 69 years of age. Family caregivers spend an average of 24 hours per week providing care for their loved ones, while 1 in 4 caregivers spend 41 hours or more per week providing care. Family caregivers who live with their dependents provide care approximately 40 hours per week. It is worth noting that there is also an ever-growing financial burden to these caregivers along with the unpaid hours supporting their dependent. For example, as more people are able to treat their chronic conditions at home, there is a cost associated with purchasing medications and medical supplies and in some instances caregivers are covering these costs. Costs of services provided by family caregivers have slowly increased over the last decade.
The Psychological, Emotional, and Logistical Stresses Involved
While family caregiving can be a rewarding experience by allowing a person to spend more time with a loved one, it also presents many challenges. A study done by the Department of Informatics and the Institute for Clinical and Translational Science at the University of California (Irvine) found that “other than the obvious medically-driven tasks, such as attending a patient’s doctor appointment and dispersing a patient’s medication, being a caregiver also implies many non-medical tasks: from the small chores of cleaning the house, cooking meals, and picking up groceries; to providing financial assistance, emotional comfort, and even IT help.”
Along with the emotional burdens of caring for a loved one comes the emotional distress and doubt of potentially not caring for a loved one appropriately or safely. In hopes of gaining a support network and medical information, caregivers may refer to Facebook groups and other online chats for medical information, but caregivers as well as medical professionals have concerns about these resources. One caregiver has explained “Being a caregiver is a job.’ Participating in online support groups raises the question: Is the information exchanged accurate and safe? (2)
The many burdens that come with family caregiving raise the question: How can designers and researchers create devices and other technologies that help mitigate existing challenges?
How to Reduce Burdens Through Design
According to the HE75 AAMI Guidance Document on Human factors engineering - Design of medical devices, there are multiple factors to consider when designing medical devices not only for patients and professional caregivers, but for family caregivers as well. (3)
Learnability and intuitiveness: With an increased amount and range of home care medical devices, devices “should be easily learnable by lay caregivers and patients.” If the design of the device has a similar appearance, feel, and operation to devices users interact with on a daily basis, intuitiveness will increasingly be based on the design of the device and less reliant on the training (which could vary) provided by healthcare professionals before the patient or family caregiver brings their device home.
User guidance and training: Both lay caregivers and patients have a diverse background of literacy, language, and education levels, which could impact their use of home care medical devices. “Documentation, user guidance, and training materials should be provided that can be easily understood by lay caregivers and patients.” These resources should also incorporate multimedia elements to make the documentation easy to digest and accommodate people with different learning styles and capabilities.
According to HE75, “Lay caregivers and patients cannot be expected to master new technology at any cost and do not have the resources available to perform excessive maintenance and calibration or to obtain replacement units easily if a medical device malfunctions…they are not necessarily comfortable with technology and might have little health care knowledge to bring to bear when learning to use medical devices.” In order to account for patients and lay caregivers with a diverse range of backgrounds who have not necessarily been thoroughly trained on instructional materials, HE75 recommends the following design guidelines for device training materials and documentation:
- Write training materials and documentation at the 8th grade level or lower: If a device is so complex that this guideline cannot be met, it is probably not suitable for home use.
- Use large font size and high contrast: With respect to the design of text, 12- to 16-point fonts should be used, and the text-to-background contrast should be high (Hogstel, 2001; Adams and Hoffman, 1994).
- Include illustrations: Documentation should include illustrations that are appropriate to the age range of the target user population (Hogstel, 2001; Weinrich and Boyd, 1992).
According to the FDA’s 2016 Guidance “Applying Human Factors and Usability Engineering to Medical Devices,” an individual’s characteristics should also be considered when designing a medical device. For the family caregiver, these considerations may include the following:
- Mental and emotional state,
- General knowledge of similar types of devices,
- Knowledge of and experience with the particular device,
- Ability to learn and adapt to a new device, and
- Willingness and motivation to learn to use a new device.
In addition to considering the usability of a device, the overall design such as the look and feel must be considered as well. During in-field observations and testing of home healthcare devices with patients and caregivers, it is evident that users often want a device that is differentiated from medical devices found in clinical environments in terms of the size, weight, aesthetics, and ergonomics. For example, many users at home want a portable device that can easily be carried around with them as they go through their normal everyday tasks at home.
Families, professional caregivers, and patients may all be interacting with a device and/or medical equipment in the home and may interact with these products differently. In order to accommodate different styles of use in a home environment, differences between a healthcare facility environment and a home environment should be considered to appropriately design for users. For example, in a home environment that is not designed with regulatory constraints in mind, lighting may vary and could affect how users can interact with their device. Along with lighting, temperature and space can vary as well. For example, cord management should be considered to account for potentially cluttered or messy spaces at home. Conducting home-based research studies can help device manufacturers understand the home use environment and all the different scenarios that a user can encounter on a daily basis in the home. Considering home use environments in this way can help to mitigate the risk of use errors occurring when users interact with medical devices and can help manufacturers design devices that can be used by family caregivers and patients. (4)
When using a device in the home, the resources and expertise provided by healthcare professionals at a medical facility are not present. Colleagues in the field assist healthcare professionals with training, troubleshooting, and new perspectives as needed. While patients and caregivers may receive some formal training before leaving a medical facility, “most home users lack formal training, beyond an hour or two with their doctor or pharmacist.” (5)
According to the article Modern Healthcare: Family caregivers feel unprepared for medical responsibilities, many caregivers struggle when taking on medical and nursing responsibilities. In 2012, an earlier report by the United Hospital Fund and AARP found that nearly half of family caregivers across the U.S. were taking on medical and nursing responsibilities, like changing catheters, often without help. Having an easy pathway to communicate with doctors and other healthcare professionals can reduce anxiety that family caregivers suffer and reduce the possibility of medical errors. (6)
Resources like the AARP Family Caregivers Division often hear the experiences of family caregivers firsthand and suggest the use of telehealth and digital technologies to assist them, such as:
- Mobile applications
- Medication reminders
- Online chats with doctors, pharmacists, or other healthcare professionals
- Mobile family communication hubs
- Task calendars
Research done by the Department of Informatics and the Institute for Clinical and Translational Science at the University of California (Irvine) particularly suggests the creation and use of a digital integrated platform that enables caregivers to have their personal schedules and information as well as their caregiving responsibilities inclusively stored. “The integrated care system may allow a caregiver to set up his/her comfort task zone for a day. It could link with calendars from work, life and caregiving activities, and automatically calculate the daily workload of a caregiver. When the calculation exceeds the threshold set by the caregiver, the system could send warning signals to remind the caregiver that there are more tasks that he/she can do on a particular day, and also send messages asking for help to the caregiver’s friends, family members, and other non-primary caregivers.”
Although not officially healthcare professionals themselves, family caregivers often play a role similar to that of a healthcare professional. As researchers and manufacturers for medical and healthcare devices, we must keep these individuals in mind by considering how their challenges and backgrounds guide their approach to using medical devices and designing to accommodate these approaches.
- Alzheimer's Association. (2015). 2015 Alzheimer's Disease Facts and Figures.
- 2001 Family Caregiver Alliance (Reviewed and updated 2017). National Center on Caregiving. “Hiring In-Home Help.”
- ANSI/AAMI HE75:2009(R)2013. Human factors engineering- Design of medical devices.
- R.J. Branaghan, “Human Factors for Home Use Medical Devices- the Home Is Not the Same as the Hospital,” July 2017. Russell J.
- A. Sutherland and M. Cavanagh (Design Science), “Coming Home: Designing for Medical Device Use Environments,” July 2016.
- E. Whitman, “Family caregivers feel unprepared for medical responsibilities,” Modern Healthcare, Sept. 2016.