Pediatric providers face uphill battle

Tips for overcoming family control, staffing issues

Pediatric providers may rightfully argue they have one of the toughest private duty assignments around. Chronically ill children with intense care needs, overwhelmed families, and continually limited staff resources can create a boiling cauldron of family control issues, staff unrest, and clinical care challenges. Meeting demanding care regimens and keeping family and staff happy without overtaxing organizational resources requires continual effort, but is possible, according to providers, by applying these techniques:

1. Understand family stresses.

Success in pediatrics starts with understanding the difficulties the family faces. The burden of caring for a chronically ill child with nonstop care needs creates enormous financial, emotional, and physical stress, according to sources. The child’s care dominates family life, is isolating, and often disrupts relationships both within and outside the family.

"You have to recognize that parents have difficulty dealing with [the child’s] multiple disabilities. They experience chronic sorrow, anger, and frustration," says Melody O’Neal, RN, BHA, president and chief executive officer of Melmedica Children’s Healthcare, a pediatric private duty company based in Country Club Hills, IL. Such stress exacts a toll; divorce among parents of chronically ill children is common. "For relationships that even survive, [there is] a tremendous impact," she adds.

With so many factors — their child’s health, their finances, their relationships — out of their control, parents take charge where they can. They may create stringent house rules and care regimens, expect staff perfection, and demand 100% shift coverage. "It’s all about control. Parents can be very, very picky — unreasonably so," says Dana Berger, RN, manager of Houston-based VNA Private Duty Services.

"What really is the issue is that the mom wants the kid to be well and that isn’t going to happen," says Peggy Gilmour, RN, MS, president and chief executive officer of Home Health and Hospice Care based in Nashua, NH.

2. Put parents in the driver’s seat as much as possible.

Providers can still be effective by accommodating parental control needs as much as possible and acknowledging parents’ care knowledge and skills. "Parents are probably the most skilled in providing chronic care, but they may be doing some things not quite by the book. You need to evaluate the outlook and potential for harm and be realistic. If the parents are doing it their way 16 hours [a day] and you’re only there for eight, [then] unless they’re asking you to do something that’s a safety issue or blatantly illegal, [you should adopt their care regimen]. Put [them] in control of the care plan as much as possible," Gilmour advises.

"Don’t go in and tell the family [how to care for the child]," O’Neal adds. "They are the experts; they know [their child] better than anyone and [they] live it day in and day out. There’s no way you can be the expert. But you do have a lot of knowledge and expertise and can offer experiences and share your insight, [so that you and the family] can share and work together."

3. Clearly designate parent-provider responsibilities.

While emphasizing a collaborative relationship, forestall misunderstandings and help manage control issues by carefully delineating both parties’ responsibilities at case opening. Have parents sign a responsibility statement, advises Marilyn Lynch, RN, CNCU, director of the Pediatric Services of America’s Nashville and Knoxville, TN branches. "Parents must understand that the child is their responsibility. [That means] if I send someone that you’re unhappy with, that’s your choice, but you’re responsible until I find someone who can staff the case," she explains.

4. Communicate extensively.

Continue the thorough and honest start of care communication as long as you provide services, sources advise. "You should have constant communication with the family. Urge them to call if they have a problem," says Berger. When problems arise, "keep them updated, even minute to minute if necessary," Lynch suggests.

5. Consistently involve managers.

While the entire care team, including administrative staff such as schedulers and billers, should do their part to promote good communication, clinical managers in particular should keep their finger on the case pulse. "Managers must have more involvement. [They should] call often and go by. [They shouldn’t ] just rely on the clinical staff," Berger recommends.

Consistent relationships are also important. It helps to have "one person that tries to sort through issues. The biggest mistake is to try to send 18 people to fix it," says Gilmour.

6. Be prepared for challenging staffing issues.

Chronic pediatric cases present special staffing challenges. Parents seeking control in a world in which they often otherwise feel powerless may quickly run through an agency’s limited pediatric staff resources. Qualified professionals may not meet parents’ exacting care, conduct, and appearance standards. Staff may also remove themselves from the case because of tensions within the home. Combating parents’ uncompromising position, as well as the rapid-fire pediatric private duty grapevine that quickly broadcasts "problem cases," can present real challenges for providers.

7. Determine family staffing preferences.

Make your way through this obstacle course by first meeting with parents to understand their needs and perception of what it takes to make a good relationship, O’Neal suggests. For example, while they may highly value clinical expertise, they may also feel strongly about having staff who are very personable and interact well with the patient and siblings. Or, they may emphasize neatness and punctuality over personality.

8. Be honest with staff.

When recruiting staff for a case, "bring out the positives of the situation," but don’t sugarcoat the challenges, O’Neal advises. Talk about the child first, and then discuss the case dynamics.

Hire only nurses with pediatric experience, assess their competency and inservice them in front of the parents, Lynch suggests. Maturity and experience are particularly important, according to Gilmour. "A seasoned home care nurse has a large repertoire of responses. [They] don’t know what [they’re] walking into when they open the door. Some people need you to be in control; others, you are absolutely under their control and [seasoned nurses can] recognize the difference and react to it," she adds.

9. Maintain professional relationships.

Counsel staff nurses, both before they start on a case and in the midst of any conflicts, not to take criticisms personally, sources advise. Remind staff, as well, about maintaining professional boundaries. "If a nurse goes beyond [her] limitations and becomes part of the family,’ and starts commenting on things that don’t have anything to do with care, you’re headed for trouble," Lynch cautions.

"Don’t become unprofessional or [forget you’re] a guest," O’Neal concurs. "Ask where to put things — you can’t take over their home or space — and be as considerate as possible when utilizing supplies, electricity, paper towels, and toilet paper," she adds.

10. Give families space.

Also, encourage nurses, whenever possible, to carry out their nursing regimen flexibly, allowing family members to interact with the patient, O’Neal suggests. For example, if the family is together when a noncritical treatment or feeding is scheduled, nurses can postpone that intervention, she explains. O’Neal also recommends not passing judgment on different parenting styles and beliefs that do not impact care.

Remember your case’ is a child

Despite providers’ best efforts, conflicts are bound to arise. When facing a difficult staffing situation, "speak in terms of the child," Lynch suggests. "Instead of saying we’re trying to staff the case as best we can,’ say we’re doing everything for Joey we can do,’" she explains.

If staffing difficulties or other conflicts persist, "sit down with the family. Get both parents together and be honest with the family. [Let them know] the stress they encounter flows over to the staff. Outline a plan so that [you] can continue working together," O’Neal advises. Include a deadline in the plan and make it clear that if the situation does not improve, you will not be able to continue providing services, Lynch adds.

11. Terminate when you can’t make it better.

Cases go through cycles, and there’s no pat answer about when case dynamics irrevocably change for the worse. Time and human resources are factors, explains Lynch. "When you’re spending a certain amount of time on this case and it’s way out of proportion with your case load — for example, the care coordinator [devotes] 20 hours per week on the case — [then termination is probably justified]," she explains.

"When issues continue to surface and it doesn’t matter what you try, it just doesn’t work, and every day or week there are new challenges and you are tense with the family," you probably need to remove yourself from the case, O’Neal advises. "You need to be honest with the family and say I’m not able to meet your needs,’" she adds.

Once it terminates services, Melmedica allows nurses who have a good relationship with parents to continue working with the successor home care company, says O’Neal. However, most nurses choose to leave "because it’s the support of the agency that allows them to stay," she adds.

Providers working through such thorny issues may find some days easier than others. "It’s a delicate situation," Berger acknowledges. "You have to work hard to please these moms and go the extra mile," she adds. Satisfaction, not to mention praise, from overwrought family members may be scarce at best. Rewards often come from making a difference in the life of a chronically ill child. "Most of the time nurses stay in because they really care about the child," she says.


• Dana Berger, RN, Manager, VNA Private Duty Services, 8066 El Rio, Houston, TX 77054-4186. Telephone: (713) 796-1166.

• Peggy Gilmour, RN, MS, President and Chief Executive Officer, Home Health and Hospice Care, 22 Prospect Street, Nashua, NH 03060-3924. Telephone: (603) 882-2941.

• Marilyn Lynch, RN, CNCU, Director of Nashville and Knoxville Branches, Pediatric Services of America, 1112 Weisgarber, Suite 201, Knoxville, TN 37909. Telephone: (423) 584-5844.

• Melody O’Neal, RN, BHA, President and Chief Executive Officer, Melmedica Children’s Healthcare Inc., 17600 South Pulaski, Country Club Hills, IL 60478. Telephone: (708) 335-3331.