📒Cystic Fibrosis Policy (QA2) (video needed)

National Quality Standard (NQS) - Quality Area 2: Children's health and safety

Implementation

Woodlands will ensure all educators are aware of the enrolment of a child with Cystic Fibrosis (CF) and have an understanding of the condition and the additional requirements of the individual child. The service will adhere to privacy and confidentiality procedures when dealing with individual health needs.

 

Confidentiality, privacy, dignity and safety

Young children often enjoy sharing the news and their experiences of living with CF with their classmates. The degree and nature of this sharing should be discussed with parents so that they can support their child in this process.

Information exchange between the family and health professionals and the service is essential to support the child’s learning and enhance peer support. The sharing of information needs to be assessed and negotiated for each child with CF, with due consideration to their needs. Educators need information about routine and predictable emergency care as it affects the child’s access to the curriculum, and their safety.

 

Health Support Plan

For each individual child enrolled in the service with CF, a Health Support Plan will be developed by the Nominated Supervisor in conjunction with the child’s family. It will be based on the child’s health support needs as identified in their CF care plan and other care information (for example if the child also has asthma or diabetes).

A Health Support Plan for a child with cystic fibrosis should address the following components:

• overall wellness
• diet
• therapy and care
• internal body temperature control
• curriculum participation issues and
• potential emergency/first aid situations.

The information should focus on what educators need to know to provide routine and emergency care. It will be used by educators in planning support for the child.

In addition, a health support plan documents individualised support which educators have agreed to provide in the areas of:

• first aid
• supervision for safety
• personal care, including infection control 
• behaviour support and
• additional curriculum support to enable continuity of education and care.

 

Overall Wellness

• The service and educators need to know if recent/frequent hospitalisation and/or general unwellness mean additional care and consideration. They also need to know of any infection control issues in addition to standard precautions. 
• It is important to the future health of a child with CF, as with all children, to minimise the risk of cross-infection of bacteria and viruses from others. This must be balanced with efforts to encourage children with CF to lead as normal lives as possible.
• Educators will alert the family of a child with CF when a particularly virulent strain of virus is present in the service, as parents may wish to keep their child with CF at home.
• All children in the service should be encouraged to maintain hygienic practices. If possible, a child with CF should, discreetly, not be partnered or sit next to another child with an obvious cold or cough.

Diet

• Children with CF have difficulty maintaining their weight and growth patterns as they cannot absorb essential vitamins, minerals, fat and proteins. For this reason, educators need to be aware of each individual child’s dietary requirements as prescribed by a medical professional.
• Children who need additional food supplements may receive them through a gastrostomy button located in their stomach. There are no routine care issues associated with a gastrostomy button for educators however if the area becomes red or inflamed, parents should be informed as soon as possible
• Children with CF will often have non-prescription medication such as enzyme tablets, as well as prescription medication such as antibiotics, which the service and educators need to be aware of. 

 

Therapy and Care

• Some children with CF may require complex/invasive health support, such as physiotherapy while attending the service. This support should be provided by a visiting nurse or therapist.
• Some children with CF require nebulised medication prior to physiotherapy. While educators can supervise nebulised medication, this will generally be managed by a visiting health worker. Educators need training before supervising the administration of medication via a nebuliser.

 

Body Temperature Control

• Children may need to be reminded to adjust their clothing to help maintain their internal body temperature control.
• A child with CF will have problems with internal temperature control and should be kept at a steady temperature in winter and summer. It is beneficial to place the child with CF in rooms that have heating and cooling where practical. 
• Salt tablets may be required during warm weather. Educators should be informed about the required timing and amount of salt tablets and ensure the child has access to fluids at all times. Medical advice will be considered. 

 

Participation in Education and Care Experiences 

• An increase in fatigue or feeling tired is common for a child with CF. A lot of effort is required of a person with CF, on top of normal childhood activities, to maintain their health. Educators will be aware of this and provide adequate opportunities for rest.
• During the onset of infections, children with CF may experience difficulty breathing or catching breath. Educators should be aware that, as with other children, breathing difficulties also can be asthma-related.
• Children with CF are continually battling infections or recovering from them, thus resulting in low energy levels and reduced concentration. Educators will be mindful of this when planning daily activities.
• A regular exercise program is very beneficial to children with CF as it helps loosen mucus, stimulates coughing and helps build up strength and endurance of the breathing muscles. Children with CF will be encouraged to take part in physical activity and exercise, following guidelines from the child’s medical practitioner.
• Children with CF can become dehydrated much more quickly than other children. In relation to this educators will:
  1. encourage frequent drinks during and after exercise, and on warm days
  2. ensure salt tablets are taken either before or after exercise on warm days with consideration of medical advice
  3. avoid scheduling physical activity during temperature extremes
  4. ensure children with CF remain, as far as is practical, in a fairly constant temperature, neither too hot nor too cold.

 

Potential Emergency Situations

Emergency situations associated with CF are rare.

If children have an intravenous line for medication, there are specific standard first aid responses which may be anticipated:

• Child reports discomfort, nausea, rashes or general unwellness.

Call family emergency contact. If they cannot be reached, call the nominated cystic fibrosis nurse for advice.

• Child reports redness, pain, inflammation or swelling at the site.

Call nominated cystic fibrosis nurse for advice, and then advise family emergency contact.

• There is a leakage of some sort from the site.

Call nominated cystic fibrosis nurse for advice, and then advise family emergency contact.

• A needle or line falls out.

Use standard first aid and apply pressure to stop any bleeding, call nominated cystic fibrosis nurse for advice, then advise family emergency contact.

 

Supervision for Safety

The child's Health Support Plan may include a range of routine accommodations so they can continue to access learning programs while effectively managing their health care. Accommodations could include:

• provision of additional time to support children managing their dietary requirements
• access to fluids and food, and the toilet, as needed
• rescheduling of physical activity to support body temperature control
• supportive and sensitive encouragement to participate in physical activity
• targeted social skills programs: frequent absences mean that some children with cystic fibrosis have difficulty making and retaining friends
• modification of the program and activities in response to the demands of therapy and treatment

 

 Infection Control Consideration

Educators should be aware that, where there is more than one family in the service with CF, cross-infection is a serious health risk. For this reason, our service will only accept the enrolment of one child with CF at any given time. This is based on guidelines developed under the Cystic Fibrosis in Education and Children’s Services Planning and Support Guide for Education and Children’s Services 2008.

 

Behaviour Support

As for all children, behaviour expectations for children with CF should be consistent and predictable, and also sufficiently flexible to accommodate periods of stress and other potential mental health issues.