Hidden Heroes: The Struggles of Caregivers

A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Caregivers play a crucial role in maintaining the well-being of their loved ones. Let’s delve into the world of caregiving, exploring the numbers, the challenges, and the impact caregiving can have on our lives.

Germany, 2017:
  • 3.4 million people required care
  • 52% of them were cared for at home by relatives
  • Every 20th person in the age between 70-74 was in need of care1
Austria, 2022:
  • 468,942 individuals received Pflegegelder (care allowance)2
USA, 2015:
  • Approximately 43.5 million caregivers existed in 2015
  • 75% of all caregivers are female
  • 42% of caregivers care for their parent
  • On average, caregivers spent 24.4 hours per week providing care
  • About 60% of caregivers show signs of clinical depression3

Amidst the statistics lies a personal motivation. Having caregivers in my close personal environment, I’ve witnessed firsthand the challenges they endure, grappling with the complexities of healthcare systems, financial arrangements, and legalities that come with providing care. Over the years, I’ve observed the toll it takes on them emotionally, physically, and mentally, as they navigate a challenging landscape to ensure the well-being of their loved ones. It’s not just about emotional support; it’s about being an advocate, a navigator, and often, a voice for those who can’t speak for themselves. While the focus is often on the one receiving care, the mental, emotional, and physical well-being of the caregiver is equally significant.

Caregiving is a profound act of love, but it comes with a heavy emotional toll. Statistics reveal that about 60% of caregivers show signs of clinical depression. The weight of responsibilities, coupled with the intimate nature of caregiving tasks, can lead to feelings of inadequacy, stress, and emotional strain. Caregivers also experience higher levels of stress, anxiety and other mental health effects:

  • A change in eating habits resulting in unwanted weight gain or loss
  • A change in sleep patterns—too much sleep or not enough
  • Feeling tired all the time
  • A loss of interest in people and/or activities that once brought you pleasure
  • Becoming easily agitated or angered
  • Feeling that nothing you do is good enough
  • Thoughts of death or suicide, or attempting suicide4

On the physical front, caregiving takes its toll. One in ten caregivers reports a decline in physical health, with increased levels of obesity, bodily pain, and an elevated risk of heart disease. The demands of caregiving often result in lower levels of self-care, adversely affecting the overall well-being of caregivers. Ongoing physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain are also common symptoms among caregivers.5

  • What influence does taking care of family members have on mental and physical health?
  • How can taking care of family members and personal freetime be coordinated?
  • What is the process of applying for care allowance like?
  • Are families with special needs isolated from society?
  • Do families have to pick up the work of professional caretakers, because there ist a shortage of caretakers?
  • Benchmarking
    • Are there existing solutions?
    • What do these solutions have to offer?
    • What can be done better?
  • In-Depth User Research: Speak to Caregivers and get Insights on their lives
  • Desktop Research: Find research articles related to the topic

1Data Report Germany 2021

2Care Allowance Austria

3Caregiver Statisticts – Family Caregiver Alliance

4A Guide to taking care of yourself – Family Caregiver Alliance

5Caregiver Health – Family Caregiver Alliance

#01 | First Aid Assistance for Chronic Diseases

Chronic diseases, such as diabetes, heart conditions or epilepsy, represent a significant and increasing health problem globally. While some of these diseases can lead to a seizure, providing first aid is very important. As the amount of chronic diseases seem to be infinite, first responders can’t be prepared for all of them when a seizure takes place. This is where a technological solution might come in.

This research project aims to come up with research findings leading to a digital / hardware solution for a certain type of disease using a user-centered approach.

My personal motivation lies in the special context of usage. During a seizure event, immediate actions are required, every minute and every second counts. As chronic diseases are becoming a growing societal challenge, first-aid has high relevance for affected persons and their relatives. In conducting research and coming up with a design solution I hope that I can make a contribution to this topic.

https://avive.life/blog/chain-of-survival/

Research questions and expected challenges

Since the scope of my research topic is still widespread, the following questions could be addressed:

  • How might we support first aid actions through technology? Where is a technical solution necessary?
  • How might we prepare first responders for first aid incidents? Is a preparation needed if technology assists users?
  • What challenges, needs and expectations are first responders confronted with?
  • How must the interface / interaction be equipped for a specific incident?
  • When do medical professionals need to take over?

In the course of research, I expect challenges that need to be overcome:

  • The chosen topic could not provide room for innovation / design solutions due to technological or legal restrictions.
  • There might already be many solutions exisiting with no further necessity for innovation.
  • Recent solutions for different diseases do not differ in their requirements.
  • Appropriate medical and health knowledge is needed to dive into this topic.

Relevance and approaches for the design fields

User requirements and context of usage

Beforehand user needs and situational circumstances need to be researched and analyzed for an appropriate foundation.

User-centered design

Due to the urgency of the situation, the interaction between the affected persons and the first responders must be seamless and user-centered.

Effective communication

Design allows to form communication to be effective and efficient, possibly satisfying. This makes a difference in the event of an emergency or when preparing first responders.

Process design

Since interaction design is not only about designing a virtual or physical product, I also consider process design to benefit existing procedures in first aid, healthcare or education.

Education

Interaction design has the potential to educate people for first aid or chronic diseases in advance through technological possibilities, visualization and storytelling.

Existing solutions

There are already some technological solutions existing with different purposes and use of technology:

PulsePoint Respond (Mobile App)

PulsePoint Respond is a 911-connected app that can instantly notify you of emergencies in your community and request your help when CPR is needed nearby.

PulsePoint helps build an informed and engaged community that drives a „culture of action,“ a key strategy to strengthen the chain of survival for victims of cardiac arrest.

https://www.pulsepoint.org/pulsepoint-respond

GALE (Smart First Aid Kit)

Apple Watch (Emergency call)

Fall detection on the Apple Watch can connect people with emergency services if a serious fall is detected.

4 Help VR (Virtual reality first aid training)

The 4 Help VR program is primarily about gaining practical skills. Due to the carefully selected script, the combination of advanced technology and our proprietary sensor mounted in the phantom, the participant experiences saving the life of the injured person. There are three scenarios available, that form a complete training of 45 minutes.

https://4helpvr.com/en/4-help-vr-innovation-in-first-aid-training/

Next steps

In the next research period the focus will be on the following steps:

  1. Maintain diverging research: On the one hand this contains further research about chronic diseases, on the other hand first aid procedures need to be investigated. Both areas have to be matched.
  2. Trying to find a first higher-level scope (converging): A decision what type of disease I want to focus on and a field of application has to be made. In doing so I specifically want to pay attention to gaps / problems that potentially have to be solved from a user’s perspective.

Relevant institutions