Results from a national survey highlight the heavy burden inflammatory bowel disease (IBD) places on patients’ family and friends, and the need for new strategies to provide better support to IBD caregivers.
The study, funded by a grant from the David R. Clare and Margaret C. Clare Foundation, was the result of a collaboration between the National Alliance for Caregiving (NAC), the Crohn’s & Colitis Foundation, ImproveCareNow, and researchers from Crimson Research at New Mexico State University (NMSU).
The survey gathered the opinions of more than 700 caregivers of IBD patients who were asked to share their experiences and the biggest challenges they face every day.
On average, respondents said they had been caregivers for approximately eight years and spent about 20 hours every week caring for people living with IBD. Most of them (81%) also said they had a part-time or full-time job and that being caregivers affected their working hours (94%) and productivity (55%).
Eight in every 10 said their tasks as caregivers ranged from assisting patients in communicating with their healthcare providers, to providing transportation, or helping them in grocery shopping. Six in every 10 caregivers also reported helping patients managing their routine medications, doing house chores, and helping manage their finances.
Almost all respondents (92%) said they also had to prepare meals for patients, including specialty foods, which, according to them, was one of the most difficult tasks.
Approximately a third of the respondents also mentioned they had to help patients manage their basic hygiene, including toileting (30%), bathing (28%), or dealing with incontinence (28%).
“Caregiving is not just an aging issue and that’s a message that came across loud and clear in this report,” C. Grace Whiting, president and CEO of the National Alliance for Caregiving, said in a press release. “Our research shows that IBD caregivers as multi-tasking superheroes. And it uncovered gaps that must be addressed, such as engaging medical professionals to provide training to friends and family members who provide care.”
The survey also found that caregiving took a large physical and emotional toll on respondents’ overall health. Indeed, many carers admitted they often felt emotionally stressed (59%), overwhelmed (49%), and sometimes depressed (16%).
Some said they felt guilty for believing they were not doing their best at supporting patients (35%), and six of every 10 admitted to struggling with a sense of loss when they thought about what the life of the person they were caring for could be like without IBD.
Almost half the respondents (44%) said they often felt fatigued, and 39% said they were not getting enough sleep.
The study also found that many caregivers were actively pursuing the best possible care to patients, with 28% reporting they have sought access to clinical trials.
“Caregivers are key members of the care team, providing physical, emotional, and financial support to people living with IBD,” said Laura Wingate, senior vice president of Education, Support, & Advocacy for the Crohn’s & Colitis Foundation.
“While focusing on their loved one, the caregiver’s own needs are often overlooked. Many experience stress, anxiety, guilt, and a variety of other emotions while providing care. They often don’t have time to decompress or take care of themselves. We need to do more to ensure that caregivers have the resources and time for respite care to ensure they can best advocate for their loved ones.”
Full data from the national survey can be found here.