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Survey makes difficulties of IBD caregiving ‘loud and clear’
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People who live with inflammatory bowel disease often require help from someone else to navigate and manage their chronic disease. Whether that is a parent, loved one or someone else, caregivers give a lot of time and make big commitments to lend a hand and guide patients through the process.
A recent survey commissioned by the National Alliance for Caregiving in a partnership with the Crohn’s & Colitis Congress and ImproveCareNow discovered exactly how this relationship impacts the caregiver. C. Grace Whiting, president and CEO of the National Alliance for Caregiving, said the survey painted a clear picture of the kind of struggles caregivers of patients with IBD face on a daily basis.
“It’s different than the caregiving journey of dementia, or the caregiving journey for aging,” she said in a press conference. “It’s something that’s chronic. It’s intermittent. There are flares. It comes and goes, and that intensity came out loud and clear in our report.”
The survey — which was open for responses between Sept. 13 and Oct. 8, 2018 — included questions related to caregiving tasks, caregiver well-being, financial impact and more. The report’s final analysis included data from 728 responders.
The caregivers ranged from age 20 to 82 years (mean 48.82 years), and 82% were women. The majority of the caregivers reported caring for a child (70%), while an additional 25% reported caring for a spouse or partner. Most of these caregivers reported that they provided care for between 10 and 20 hours a week.
Two of the most commonly reported activities were providing meals and attending appointments with health care professionals (> 90%), followed by communicating with health care professionals, providing transportation and grocery shopping (> 80%). Caregivers also reported regularly assisting with medication, housework and managing finances.
More than 80% of the caregivers reported that they worked either full- or part-time jobs while providing care. Many of these individuals reported that their caregiving caused them to miss time at work (94%) or their productivity to suffer (55%).
Providing care also had a deep impact on caregivers’ own lives. Nearly 60% of responders reported that caregiving was emotionally stressful, 49% felt overwhelmed and 44% reported that it affected their mental health. Individuals also reported feeling fatigued (44%) or losing sleep (39%) because of their commitment to care.
However, these caregivers also felt a sense of pride because they had been able to learn more about the individual’s condition and be part of their health care team.
The report also made a few policy recommendations designed to help caregivers and their families:
- Expand research and continue funding to the Centers for Disease Control and Prevention to better understand IBD and its impact on caregivers.
- Ensure caregiver financial security by providing support in the workplace and expanding the reach of health programs.
- Improve delivery of health care, including expanding telemedicine, increase insurance coverage for patients with IBD and provide more training for caregivers.
- Support the mental and physical health of caregivers by expanding respite programs, mental health programs and expand research. – by Alex Young
Reference:
https://www.caregiving.org/ibd/
Disclosures: The report was funded by the David R. Clare and Margaret C. Clare Foundation. Whiting is employed by the National Alliance for Caregiving.