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A Complex Web: Family Caregiving and Healthcare

June 7, 2016

[Editor’s note: This blog was originally posted on the the Atlas of Caregiving website on June 2, 2016. The Atlas of Caregiving Pilot is a partner project of Family Caregiver Alliance. FCA Executive Director Kathleen Kelly wrote in the foreword to the Atlas of Caregiving Pilot Study Report: “This project tests the boundaries of collecting data about the lived experiences of family caregivers across the spectrum of ages, health conditions, and family configurations.”]

“It is tough to be the caregiver for someone else when you have your own significant health issues to monitor and treatments to do throughout the day. The hardest thing has always been when I’ve been in the hospital or on home IV’s round-the-clock. It brings the stark reality of my illness into undeniable territory and that is hard for the kids.”

Julie1. Mother of two. Retired pathologist. Wellness coach for those living with chronic illness. Family caregiver.

Each of the family caregivers who participated in the Atlas of Caregiving Pilot Study manages a distinct set of challenges and responsibilities. Some caregivers, like Fernando, care for a parent and are managing a care network that includes ten clinical professionals, three paid caregivers, and several long-distance relatives. Others, like Ana, have a tighter network — she has had cystic fibrosis since birth, and cares for herself as well as her son who has depression. She provides much of the their care directly, with the support of many friends:

At first glance, their experiences might seem quite different. Yet with a deeper look across their day-to-day lives, their shared experience, and important lessons on family caregiving, begin to emerge.
One of their greatest shared experiences is complexity. Think, for a moment, just how complicated care networks are, and how many people — family, friends, and medical providers — are involved. Then, imagine how it must be to coordinate them, juggling activities and schedules, people and institutions — knowing that mistakes can be dangerous and that there is always an unexpected event around the corner. Finally, add all this to the general demands of life and work.
Family caregivers are at the center of these complex webs of family, social groups, and medical, service, and support professionals — each with their own requests and requirements. Negotiating these networks while providing care effectively can be one of the most challenging aspects of family caregiving, and the stress can be intense. Making this easier for the family caregiver not only supports their efforts, but their own health and well-being.
In the Atlas of Caregiving Pilot Study, we explored new ways to research family caregiving. Our research offered a deep look at the day-to-day lives of family caregivers, and yielded findings for groups and institutions working in family caregiving. Here’s how health, service, and support professionals can help:
Help family caregivers develop self-knowledge. Many social service and support organizations view educating family caregivers to be a key part of their mission. This can be expanded to include guiding family caregivers on how to become better experts on their own caregiving experiences and situations. Our study found that participants learned a lot about their own lives from answering our interview questions and reviewing their data from activity logs and sensors. Given this finding, caregiver support organizations might consider how they can empower family caregivers by helping them conduct and benefit from self-observation.
Know each family caregiver’s care network. Discussions about family caregivers in professional health settings often focus on a primary family caregiver and single care recipient. This can blind providers to other key people in the care network and the implications of network dynamics, especially with regard to authority, communication, and decision-making. In addition, by focusing on single family members, a professional provider misses not only the opportunity to educate others who might be directly involved, but also the chance to learn important social context about the care recipient or their environment.
Understanding the family caregiver’s day-to-day reality. Caregiving requires managing a constantly changing set of activities, and it can be influenced by a myriad of different factors in each family. Understanding these factors, and tailoring requests and treatment appropriately, is critical to enabling follow through and sought-after outcomes. Further, within the home environment, family caregivers are called upon to navigate between managing non-medical tasks and administering complex medical care, often without training. Easing unnecessary burdens that can be caused by bureaucratic systems or lack of clear communication directly supports the family caregiver’s efforts and well-being, to the long-term benefit of everyone involved.
About the Atlas of Caregiving Pilot Study
The Atlas of Caregiving seeks to understand the lived experience of family caregivers in order to learn how we can make their lives easier. This series of blogs shares the study’s lessons for caregivers, employers, the tech community, service providers, and researchers. You can read the initial post here.
The Atlas of Caregiving Pilot utilized cutting edge tools and analysis to study and map family caregiving.  Our 14 pilot study participant families all live within two hours of San Francisco. Caregivers ranged in age from 30 to 73, and the care recipients from 3 to 101. They are managing a diverse set of conditions including Alzheimer’s, cancer, cerebral palsy, cystic fibrosis, diabetes, and Parkinson’s.
The study combined emerging technology with traditional ethnographic interviewing to enable a comprehensive look at family caregivers’ lives. Each participant took part in some or all of the following:

  • One-on-one interviews
  • Logging their caregiving and non-caregiving activities, including how stressed they felt
  • Wearing a Narrative Clip a small, wearable camera, which took photos roughly every 30 seconds
  • Wearing an Empatica E4, a wrist sensor, which collected data on movement, heart rate, and electrodermal activity
  • Having a Netatmo Weather Station placed in their home to collect data on noise and CO2 levels, temperature and humidity
  • Having SmartThings Motion Sensors placed throughout the home, these collected data on movement

The Atlas of Caregiving Pilot Study was supported by a grant from the Robert Wood Johnson Foundation in collaboration with the Family Caregiver Alliance. You can download the Pilot Study Report here, and view case studies of all the families here.

1 In the published pilot study, pseudonyms were used for all participants to protect each family’s confidentiality and privacy. Julie has provided permission to use her real name here; however, she is represented in our report and care network diagrams as Ana.