While the connection between physical and emotional changes among patients with chronic kidney disease (CKD) through their disease process may seem obvious, few studies have reported results on the alterations or limitations caused by CKD in the body image of individuals in this patient population. Fewer still report results from the perception of nurses who live daily with patients with this pathology, explains Guillermo Pedreira-Robles, RN, BScN, MSN. He adds that understanding these perceptions provides significant power and a large knowledge base for the profession.
Exploring Nurses’ Perceptions
For a study published in the Journal of Renal Care, Pedreira-Robles and Mariela Patricia Aguayo‐González sought to explore nurses’ perceptions of the changes occurring in the bodies of patients with CKD throughout their disease process. “Using scientific methodology to expose these perceptions strengthens the basis for continuing to improve the care provided to patients with CKD,” says Pedreira-Robles. “Because we sought to expose knowledge based on experience, we conducted a qualitative study that could collect this information with the highest methodological and scientific quality.”
Data were collected by semi-structured, face-to-face, 40-to-60-minute interviews, carried out in a closed office in the workplace, with nurses from the nephrology service of a University hospital between April and May 2018. “Participants were different ages and had a great deal of professional experience caring for patients with CKD,” notes Pedreira-Robles. During the interviews, open questions were asked, based on a literature review conducted prior to the study on the physical symptom and body image impacts of CKD. Interviews were transcribed and analyzed using the seven phases of Colazzi, a process that provides a rigorous analysis and is closely based on the data, resulting in a concise description of the phenomenon under study that is validated by the participants.
Coexistence of Physical & Emotional Pain
With participating nurses believing there was a close relationship between the physical and emotional impacts of CKD—identifying elements intervening and coexisting in patients’ bodies—a central theme of “from physical to emotional pain in the body of persons with CKD” emerged from the data. “This is the most important finding of the study, and the one that best defines the entire content of the study,” explains Pedreira-Robles. “Everything that happens physically on the body (punctures, bruises, surgical wounds, catheters) has an equal impact on the emotional part of the person.
All of the seven subthemes have a special importance to explain the nurses’ perceptions of the changes occurring in the bodies of persons with CKD throughout their disease process:”
- Stigma created by the need for dialysis: Nurses reported that patients with CKD were differentiated from others by their permanent dialysis access, identified as a physical mark, and aesthetic scar, and a mechanical device that was visible and notably marked by the body.
- Dysfunctionality accompanied by pain: Nurses reported that patients with access dysfunction thought constantly about it and the treatment, and thus, pain or physical complications were accompanied by emotional pain outside treatment hours.
- The feeling of slavery: The constant repetition of treatment (daily for peritoneal dialysis or every two days for hemodialysis) and the understanding that it could continue for life could, according to the nurses’ perceptions, lead patients with CKD to have a feeling of slavery.
- Lack of patient information: Nurses reported that patients with CKD were often not informed of certain aspects of the disease and its treatment and, consequently, failed to understand important issues related to their emotional well-being.
- The silence of taboo: Nurses reported a taboo on discussing sexual problems, effects of CKD, treatment impact, and implications for social life, physical appearance, self-esteem, etc.
- Lack of resources: Nurses felt they did not have all the necessary skills and resources needed to address patients’ emotions, mourning, losses, etc., due to the great magnitude that these problems represent.
- Hope for improvement: Abdominal scars left by kidney transplant were experienced positively as signs of a release from the slavery of dialysis, and therefore, hope of getting better.
“Going through the identified problems, nurses are able to dive into them, fully understanding that they must be perceived as opportunities for change and improvement in the care provided,” adds Pedreira-Robles. The solutions come proposed through the identified problems or gaps. We are not just trying to analyze the problems, but to bring changes and describe clear benefits.”
A Complex Whole
Pedreira-Robles suggests that the main evidence derived indirectly from the study is the need to continue understanding the person with chronic pathology as a complex whole: “All its parts are equally affected by the disease and each must have efficient and effective responses,” he says. “While keeping patients alive is crucial, we must consider what life patients lead, their quality of life, and the bodily harm and related problems derived from carrying a catheter, having a scar, being punctured over and over, having problems with the access for dialysis, etc. The need to provide professional emotional support and the need to establish continuous health education routines were identified as key points for improvement. These results must be directed to management systems and governments to achieve a paradigm shift.”
From physical to emotional pain in chronic kidney disease: Nurses’ perceptions