The positive effect of employment

by Gary Peterson

Pre-dialysis patients' perceived autonomy, self-esteem and labor participation: Associations with illness perceptions and treatment perceptions. A cross-sectional study

In my opinion, this paper from The Netherlands in BMC Nephrology addresses the most essential component of dialysis care that is being largely ignored in the U.S. today — the positive effect of employment. An excerpt:

"Because of the small number of patients (in the study) aged 18-64 years, we could not investigate the relationships between patients' perceptions of their illness and current treatment on one hand and employment on the other hand more thoroughly. These findings, however, do show some trends: employed patients perceive their treatment as less disruptive and their illness as better controllable by self care and medical care than unemployed patients."

The paper speaks of how employment instills a sense of empowerment, self-esteem, and autonomy in their working-age patients. It speaks of the need for caregivers to address the negative and maladaptive beliefs of pre-dialysis patients regarding employment. It speaks of the need to stimulate positive and realistic beliefs, as well as to challenge negative beliefs. The paper calls for patients with severe CKD to be educated by a multi-professional team consisting of nephrologists, nurses, employment experts, psychologists, and social workers.

The authors also reinforce an observance that patient advocates have shared with me, which is that once dialysis patients stop working, it is almost impossible to get them working again.

While I read the article, I found myself continually questioning why nephrologists and dialysis providers are not targeting employment for working-age patients. Is this not a basic human need that is also essential for greater health and long-term survival? What dialysis professional would not insist on employment as a treatment goal for themselves?

Frankly, it raises basic questions as to whether the problem in the US is not with the patients — as is often stated privately — but instead with the negative and maladaptive beliefs and policies of both the nephrology establishment and the largest dialysis providers. It is hard to accept providers' claims that they deliver patient-centered care when they neither have in-house employment experts nor target employment and/or rehabilitation as a treatment goal.

Instead of waiting for the nephrologists and providers to change, dialysis patient groups should be insisting that employment is an essential treatment goal for long-term survival and a basic human right for all working-age patients.

Comments

[roberta mikles]

As I read the above, I am reminded of how many patients I have communicated with who could no longer do the job they were trained for, however, had a great desire to work. Many of these patients, with retraining, or assistance, could have found another job that would have supported their self-esteen and made them feel more productive as well as supporting a positive emotional status. This leads further to yet another problem. Many of these patients, who have lost their ability to work develop various emotional problems as they enter into a new way of living. Often, these feelings can be transferred on to other situations, they can become depressed, become concerned about things they normally would not, etc etc etc. These behaviors are often misinterpreted by staff and the patient is labeled as a 'problem', disruptive, etc... Therefore, even more important for staff to fully understand that which the patient experiences. Being able to work, for those that have the desire is critical and providers must become more alert to such and take action.
Roberta Mikles
Director, Advocates 4 Quality Safe Patient Care
www.qualitysafepatientcare.com

[David O. Stapel]

I have been an hemodialysis patient for 27 years.
For 17 of those years, I worked 30-40 hours per week. Maintaining a dialysis schedule and working full time was not easy. But the feelings of normalcy and accomplishment are priceless!

When I started dialysis in 1983 I just "assumed" I would continue to work. No one told me any different. (And anyway, I needed the money!)

Back in those days quite a few dialysis patients in my unit worked. This is not so true today. A very small percentage, if any, work.

I think back in the 80's, dialysis facilities accommodated working patients. My center would run patients till 10PM. (I ran from 6PM to 10PM, Tues.,Thurs. and Sat.)

Working gives dialysis patients meaning and purpose in their lives, not to mention much needed cash!