If you are an anxious family caregiver for a patient with chronic kidney disease (CKD), you’re not alone. Research shows that caregivers do not feel adequately informed about CKD, including the available treatments and the expected course of the disease. This can cause many to feel uncertain of their ability to care for a CKD patient at home. Learn more about what researchers have discovered about caregiver needs and how their healthcare team can help.* 

What the Researchers Did

Multiple authors worked together to conduct a qualitative literature review of available studies on topics related to family members who take care of a patient with kidney failure receiving comprehensive conservative care (CCC). CCC is a holistic, patient-centered type of care that includes interventions to slow the progression of kidney disease and minimize complications. 

What They Found

Of the five studies selected by the authors, two were from the United Kingdom, one was from the United States, one was from Canada, and one was from Thailand. In total, 70 caregivers participated, most of whom were spouses/partners or daughters of the family member with CKD receiving CCC. 

The five studies all indicated that the main need of families was education and knowledge. Family caregivers admitted to having difficulty understanding the initial diagnosis, and needed more information on the disease symptoms, management, and the expected evolution. 

In addition to knowledge, another deficit was regarding family caregivers’ psychological health. Many of them expressed frustration, disappointment, and panic regarding their ability to manage the disease over an extended period. Moreover, family members admitted feeling guilt about knowing that the end of their loved one’s life was near. 

Family caregivers also reported disappointment in social service discussions, and their ability to receive aid. Advanced care planning with CKD patients was another area of concern. Many caregivers felt that healthcare professionals did not do enough to facilitate these conversations, and that financial and home service aid to patients and caregivers were inadequate.

In the Thailand study, specifically, spirituality was reported as a necessary source of support for both patients and caregivers.  

What The Findings Mean

Unmet needs result in many caregivers feeling abandoned by their healthcare teams. The authors of the review recommend the family nursing assessment using the Calgary model, in which “the nurse guides and assists the family in adapting to chronicity, dependency, or the end of life and promoting health.”

They concluded that a society-wide paradigm shift in healthcare for both patients and their family members is imperative. “It is necessary to stop seeing the family as a mere patient care resource,” they wrote, “and incorporate them into health processes.”

*Bonavitacola, J. (2022, March 2). Families Need Knowledge, Health Care Support When Caring for Patients With Kidney Failure, Review Finds. AJMC. https://www.ajmc.com/view/families-need-knowledge-health-care-support-when-caring-for-patients-with-kidney-failure-review-finds