3 Different Forms Of Respite Care For Pediatric Patient Caregivers

Caregivers who are providing in home care for pediatric patients know firsthand that this is a mixed bag. There is a lot of stress and anxiety in meeting the needs of a child who suffers from a disability or perhaps terminal illness. In addition, the constant monitoring of medical equipment, meeting of deadlines with respect to the administration of medications and medical treatments, and of course the transportation needs associated with keeping doctors’ appointments, therapy sessions, and other office visits is sure to wear down even the most dedicated caregiver.

Sometimes the caregiver is a natural parent while at other times it may be a foster parent or a relative of the child. Respite care for pediatric patient caregivers takes into account the mixed emotions that go into the care of such a young person in addition to the close psychological bonds that exist between caregiver and patient. To this end, there are currently three different forms of respite care available in such situations for residents of both the UK and the US:

1. Day care centers specifically set up for the admission of ill children with a plethora of medical needs and disabilities are becoming part and parcel of the childcare landscape. In such settings there are highly trained personnel who will offer their services on a limited time basis. Sometimes they span only the time between one parent getting off work and the other one going to work. In other cases they may make up for the time that one parent spends putting in a full eight hours at a job. These kinds of pediatric patient caregiver respite care centers are found in hospitals, nursing homes, and also as part of some faith communities.


2. Respite care of pediatric patient caregivers that takes place inside the home may span a few hours – to allow mom and dad a night out on the town -- or just a few minutes to permit one caregiver to leave while awaiting the other caregiver to come home. In cases of emergencies that require the sudden absence of a parent, such short term respite care is also available at a moment’s notice.


3. Planned periodic respite care for pediatric patient caregivers is frequently spearheaded by the organization funding the cost for such care. In some cases it may take the form of a specially outfitted summer camp that allow the kids to experience a summer at camp while it gives the family a chance to vacation from the daily care giving duties. Usually this is done during the summer months, although there are also some winter camps available.

Because of the cost involved in respite care for pediatric patient caregivers, not all families in deserving situations are able to make use of the opportunities offered. While it is true that there is some governmental funding for various programs, respite care is one of the most underfunded programs currently on the books within the framework of the social services network and parents must depend on the kindness of donors to get the breaks they need.

Make Respite Care As Part Of Your Hospice Care Arrangements

Hospice care is defined generally as in home care to a terminally ill patient whose disease has progressed to such an extent that it is likely to have her or him succumb to its ravages within six months or less. The goal of hospice care is to permit the patient to die in the comforts of home, surrounded by loved ones, and away from the often times impersonal and constantly changing environs of the traditional hospital setting. Hospice care is a program that involves a team of professionals who not only see to the patient’s medical needs but also to the emotional wellbeing as well as any pain management issues.

When respite care becomes part of your hospice arrangements, you have probably already noticed that there is a lot more to this arrangement than even the most consideration definitions and generally speaking, a big chunk of care is still provided by loved ones and kinship caregivers. In the same vein, this is often the time that the family must come to terms with the fact that you will leave them soon and for some this is a harder pill to swallow than they might have initially assumed.

To this end respite care provides the opportunity for your kinship caregiver to get some alone time to just recharge and deal with something other than death, dying, and the sadness associated with the thought. In addition, since your caregiver most likely also has a family to look after, it only makes sense to enlist the help of a trained respite caregiver to take over for a while so she or he may devote the time needed to the care of the family. This kind of respite care is usually paid for my Medicare and administered in an actual hospice facility.

Transportation may be arranged with one of the contracted patient transporting agencies or you may enlist the help of your loved one to be taken to the hospice home. It is a little known fact that respite care in a hospice is covered by Medicare at 95% for up to five days at a time. After these five days you need to leave the hospice and your caregiver needs to once again take over being the primary care facilitator for you in your home. It is interesting to note that number of times that you may give your caregiver a break by checking into the hospice facility is unlimited.

When respite care becomes part of your hospice arrangements, your loved ones will usually breathe a bit easier. This is not at all a reflection of their unwillingness to care for you but instead it is simply a sign that they are as apprehensive as you may be about the turn your health has taken and how to cope with the implication of the diagnosis. Although terminal illness in context is often intellectually understood, dealing with it and actually embracing it as part of the natural process are two very different things indeed.

7 Procedural Questions Your Respite Care Agency Must Answer

Contracting with a respite care agency is a somewhat time consuming process, but by doing the homework ahead of time, you are certain not to have regrets and worries later on. Additionally, knowing exactly what kind of care is provided during a normal respite care visit and what kind of care is not included also will enable you to make financial decisions when it comes to planning for additional care that you or your loved one may require. These are the procedural questions any respite care agency needs to answer up front:

1. Identify the kinds of respite caregivers who will be sent out by the agency. Are these individuals who have extensive schooling in geriatrics or childhood development, are they holders of advanced degrees, or are these individuals who are primarily choosing respite care as a profession after having already schooled for different disciplines?


2. What agency training process is chosen to prepare the respite workers for their duties? In some cases this may be a college level class while in other cases this is training provided in house. Knowing ahead of time the level of training the workers have received can greatly increase your level of confidence in them.


3. What are the qualifications of the trainers? Are these trainers who have advanced degrees or are they respite care providers who have worked their ways up to the training and management area of the agency?


4. What is the emergency preparedness the respite care workers have received? While anyone is required to know CPR, is this a skill that is reinforced during agency training or is this something that is left to the individual worker to obtain from outside agencies? If the latter is the case, who is in charge of verifying that an appropriate course was chosen?


5. What background checks are conducted with new workers and how often are these checks repeated? The majority of agencies will check once upon hiring on a new respite worker and usually a basic criminal background check along with employment verification and also education or training verification is conducted. Rarely is a background check repeated at regular intervals. Drug testing is becoming more common, but once again it usually only takes place upon a new hire situation and rarely during the course of the employment situation.


6. What kind of experience does the respite worker assigned to your family have with the kind of care you loved one requires? This is especially vital in a case when a child suffers from a special kind of condition that also requires special care or background knowledge. If symptoms are subtle, the experience of the respite care worker makes all the difference in the kind of care your loved one will receive.


7. Finally, how will the respite care agency act when in case of an emergency you cannot be reached and neither can the next family caregiver on the list? Is there a definite progression of contact and also an agency protocol that will be followed in such a situation?