When diabetic wounds threaten a limb, patients aren’t the only ones who suffer pain and anxiety. Their family caregivers share the burden—and lack of information about limb loss ranks as a major source of stress.
That’s one of the key findings from a paper published this fall in the Western Journal of Nursing Research. Titled “Informal Family Caregiving of Patients with Diabetic Extremity Wounds,” the study found that “increased caregiver burden and decreased quality of life were associated with higher patient amputation level.”
The paper documents the specific factors that weigh heaviest on caregivers. We’ve enumerated those below. Since November is National Family Caregivers Month and National Diabetes Month, we also have listed some resources you can use to ease your own stress, advocate most effectively for your loved one (and yourself), and maximize the odds of a favorable outcome for the patient in your care.
Key Findings from the Study
The paper defines “informal family caregivers” as anyone who provides uncompensated support to a relative with a limb-threatening diabetic foot wound. The majority of the caregivers in the study set are women, most commonly between 50 and 69 years old, and typically retired, unemployed, or working from home. “These caregivers have a vital role in wound care, assisting the patient with activities of daily living, medication adherence, psychosocial support, and obtaining follow-up services,” the authors note. Most important, informal family caregivers “bridge the divide between patients and multiple points of care.”
Unfortunately, that bridge rests on a rickety foundation. As the paper notes, two of the main obstacles to effective diabetic wound care are 1) poor communication with doctors and other healthcare providers, and 2) lack of access to reliable information sources. “Many caregivers reported minimal communication with clinicians regarding appropriate wound care, what to expect with wound progression, and feeling as though they had no ‘backup’ from professional health care,” the authors write. This dynamic leaves caregivers feeling helpless, anxious, and ineffective.
It also amplifies the number-one source of stress that caregivers report: the possibility of amputation. This is particularly acute in cases where limb loss would significantly impact the income level of the patient and/or household. “Poor or inconsistent communication with the health care team, perceived helplessness, and anxiety contributed to attempts of families to ‘bargain’ with providers over holding off on amputation,” the paper notes. If the patient does end up losing a limb, caregivers often feel as though it’s their fault and become overwhelmed with guilt—which, in turn, makes them less confident and less effective in supporting the new amputee.
How to Break the Negative Spiral
The paper’s authors call on clinicians to take the lead in removing obstacles to effective informal caregiving. “Health care providers should provide clear, consistent, and continuous education to informal caregivers to reduce their psychological stress,” they write, “while also positively impacting the informal care received by the patient.” For example, health teams can improve communication with caregivers by:
- Improving communication by providing multiple points of contact for patients, including telehealth portals
- Creating an online knowledge base where caregivers can access resources and pose questions
- Maintaining routine contact with caregivers, rather than waiting for emergencies to arise
- Scheduling appointments that accommodate other demands on the caregiver’s time (such as work, family, or self-care)
In addition to whatever support their health providers offer, caregivers and patients can and should equip themselves with information. A starter list of resources includes:
- American Diabetes Association
- Association for the Advancement of Wound Care
- American Podiatric Medical Association
- Mayo Clinic
- National Alliance for Caregiving
- Amplitude’s Guide to Living With Limb Loss
“Further research is warranted to elaborate on the caregiver experience and identify intervention targets that will positively impact patients with diabetic wounds and informal caregiver as a family unit,” the Western Journal of Nursing paper concludes. “Given the millions of patients affected every year by diabetic extremity wounds, the relatively small number of reports identified by this review, as well as the lack of any intervention studies represents an opportunity to positively affect an overlooked caregiver group.”