AHCPR's urinary incontinence caregiver guide.

Finally, a practical guide that front-line staff can actually use

When was the last time you actually used one of your Agency for Health Care Policy and Research (AHCPR) clinical practice guidelines - actually took it out onto the floor to help you understand and manage a resident's problem?

More likely than not, your AHCPR guidelines are sitting on a shelf - next to your computer manual. Both the guidelines and the manual are comprehensive, must-have references. But to actually use them - well, that's a different story.

By the time you wade through all the background, theory and technical jargon to find that one piece of practical information you need, the problem will probably have already been solved by someone else. The truth is, just as most computer manuals aren't written for the everyday keyboarder, clinical practice guidelines aren't written for staff that actually provide day-to-day care.

Fortunately, that's about to change (at least for the guidelines, if not the computer manuals). AHCPR has made it a point to listen to the concerns of people working in long-term care and has responded with the new Caregiver Guide: Helping People With Incontinence.

This "user-friendly" booklet was developed as a companion piece to AHCPR's revised Urinary Incontinence Clinical Practice Guideline, published last March. The Guide targets the front-line nursing home staff (CNAs) with the basic information all LTC caregivers should have about managing urinary incontinence, boiled down into six pages of easy-to-read, easy-to-understand material in an attention-holding format.

A "sneak peek" at the contents, under such headings as:

* What is Urinary Incontinence? This very basic, two-paragraph definition truly begins at the beginning - with the correct pronunciation of "urinary incontinence" and an introduction to its acronym, UI. This section stresses that "UI is not the resident's fault. It is not a normal part of aging...He or she has a health problem. And you can help."

* You Are the Key. This brief section validates the CNA as an important member of the team working to improve and/or cure the resident's incontinence.

* Causes of UI. Nine bulleted items outline the common causes of UI in lay language.

* Finding UI. This section again underscores the important role of nursing assistants, this time by pointing out that they might well be the first people to notice a resident's incontinence. A short checklist of signs and symptoms is included.

* Finding Out More About UI. This section outlines the ways in which CNAs can help residents with incontinence by observing behaviors, keeping bladder records and passing information on to nurses and/or physicians.

* Bladder Record. One page that is set up as an actual bladder record shows CNAs the types of information they'll be expected to gather and record.

* Treating UI. This section is made up of brief, easily understood explanations of the different approaches to UI treatment: behavioral treatments (e.g., scheduled toileting, prompted voiding, habit training); a paragraph explaining the availability of medical and surgical treatment, and stressing the CNA's role in caring for the resident during and after these treatments; and a section describing Kegal exercises for strengthening of key muscles and the CNA's role in helping residents perform them.

* Other Ways to Help Residents with UI. This sections outlines the ways in which CNAs can assist particularly needy residents: those who are bedfast, those who require assistance getting to the bathroom, and those who "wet the bed" at night. It also addresses skin care concerns, as well as protective pads and clothing. A paragraph on catheters defines and describes both indwelling and external devices, and even includes a reminder to CNAs to wash their hands before and after emptying catheter bags.

* For More Information. The last page of the booklet provides the addresses and phone numbers of related associations and foundations that can provide information, as well as a list of relevant AHCPR publications with instructions for obtaining them.

Even though we couldn't operate nursing homes without them, CNAs are sometimes undervalued or made to feel as if they're not an important part of the health care team. The Caregiver Guide does just the opposite; it lets CNAs know that they are important enough to have their own manual. This goes a long way toward improving morale and motivating the CNA's active participation in continence care, not the most pleasant of tasks.

A companion piece to the Guide, a two-page Alert for Directors of Nursing, provides tips for implementing a continence program along with much of the same information covered in the Caregiver Guide but written at the level of comprehension expected of a DON. This piece was a joint production of AHCPR, the American Medical Directors Association (AMDA) and the American Health Care Association (AHCA).

At the end of the Alert, an address is provided for DONs to write to AHCPR with their "UI Success Stories." While it is too early to have analyzed any impact of the Caregiver Guide, the results of this call for UI success stories will be interesting to monitor.

A third piece, Understanding Incontinence, is aimed at the resident experiencing the problem (or the resident's family), again providing basic, easy-to-understand information about everything from how the body makes, stores and releases urine, to incontinence treatments and their relative risks and benefits. This pamphlet will most likely directly benefit individuals in independent and assisted living settings. The important message they receive is that incontinence is not a normal part of aging, but rather is a treatable and often reversible condition for which medical care should be sought.

For more information about AHCPR's Caregiver Guide (Publication No. 96-0683), call 800-358-9295. All of AHCPR's guideline publications are available free of charge.

RELATED ARTICLE: Birth of a Caregiver Guide

A look at how AHCPR's Caregiver Guide was developed shows how a government agency can relate with those whom it is charged to serve. How it came to be is a study in an agency's responsiveness to those it serves. It illustrates how long-term care practitioners "out in the field" can have a tangible impact on practice guidelines designed for their use, simply by voicing their concerns and making recommendations directly to the agency.

AHCPR is known for a series of in-depth, comprehensive clinical practice guidelines, developed by top experts in their fields and based on the most accepted research. The urinary incontinence Clinical Practice Guideline, designed (as the others) for professionals, was no exception. The Guideline is a 154-page, 1/4-inch thick reference, replete with research data, detailed recommendations and management algorithms. It is an excellent reference for physicians - and, as such, usually ends up sitting on the shelf in the nursing home because it simply isn't written for the people actually providing most of the care in that setting, i.e., nurses and CNAs.

AHCPR has even produced a shorter, "Cliff's Notes"-type version, the Clinical Practice Guideline Quick Reference Guide for Clinicians, which is a distillate of the material presented in the full Guideline. While useful for doctors and some nurses, it is, again, not targeted at front-line staff or written in a way they're likely to understand.

Prior to the March, 1996 revision and release of the Guideline, there was a movement afoot among agency staffers and consultants to make the guidelines more "user-friendly" and practical for front-line staff. In fact, in a separate initiative, the AMDA developed and published its own UI guideline aimed at providing practical information for the nursing home caregiving staff.

In response, AHCPR actively solicited input from the long-term care industry and called together a group that included a physician, a nurse practitioner and representatives from the American Health Care Association. My position with AHCA at that time afforded me a place in that group and allowed me to watch and participate in the process as it unfolded.

We felt strongly that the revised Guideline, as constituted, would be used little if at all in the nursing home (ironically, one of the institutions in which it is most needed). We determined that those who would most benefit in this setting from a guideline approach were the DONs and CNAs. With this input, the transformation was achieved - a testament to government agency responsiveness at its best.

Our firm, ContinenceCare, has begun distributing the Caregiver Guide to nursing assistants during our incontinence inservices. The response has been overwhelmingly positive, with CNAs staying after the inservice to take additional copies for themselves and for coworkers who weren't able to attend. The new guides have evidently achieved their goal: making the caregiving team complete.

Perhaps the greatest benefit to be derived from having a practical, usable, comprehensible UI guide for staff is its potential for changing caregiver attitudes - from the physician to the DON to the RN to the CNA. Even in this "enlightened" era, the point still needs to be driven home that urinary incontinence is not an inevitability of aging and a caregiver's "cross to bear." It is a treatable and often curable medical condition that responds to caring and informed management. Residents' quality of life often depends, sometimes completely, on caregivers' realization of this.

Alicejean Leigh Dodson, RN, MN, is Director of Nursing for Continence Care, Inc., a Vienna, VA and Baltimore, MD-based company specializing in physician consultative services for incontinent LTC residents. Diagnostic and treatment recommendation consultations are conducted by board-certified urologists and nurses.