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Patient and Family Support
These suggestions are given by health care providers and parents for the needs of children and adolescents with gynecologic cancers while in the hospital, during recovery and for long term follow-up.
A Positive Atmosphere
- Provide and encourage access to the outdoors through a sundeck, tranquility garden, and big open windows.
- Decorate rooms with bright colors.
- Allow blankets, pillow and pajamas from home.
- Anticipate and provide for the food preferences of children and adolescents.
- Allow family and friends to visit 24/7 if medical status allows.
- Never leave these patients alone during acute illness.
- Find reasons to “celebrate” something every day…i.e. finished therapies, IV’s out, going home or back to school.
- Arrange group meetings with other children and adolescent survivors.
- Anticipate the child’s need for extra attention throughout their illness.
- Provide a “safe area” where there are no procedures, no talk of illness, no needles allowed and encourage “normal play”.
- Decorate room with photographs from home.
- Children and adolescents are used to being active and busy, mentally and physically.
- Provide television, video games, DVD’s, and computers while hospitalized.
- Allow adolescents to use their own personal phones and “electronic gadgets”.
- Encourage “staying connected” with friends via social Medias as well as in person.
- Provide board games, puzzle and reading books, cards, and age appropriate magazines.
- Provide illustrations and pictures that help children better understand procedures and disease process
- Visualization and imagery techniques may be useful to help decrease fear and anxiety.
- Offer holistic therapies i.e. play, touch, massage, aroma, music, art, pet, and dance.
- Allow “pet visits” from home. Kids often talk to their animals when they can’t talk to adults.
- Encourage friends, teachers, and family to mail cards and letters regularly.
- Encourage day trips and visit camps for children with other cancers.
- Encourage exercise and continuing normal daily activities as much as possible.
- Yoga may be helpful to older children and adolescents.
- Provide hospital visits from Disney characters, celebrities, and sports figures that children/adolescents can identify with.
- Encourage children to keep/make a coloring book or log.
- Have a party with balloons, bubbles and clowns as a diversion from being ill.
- Use anatomically correct dolls to demonstrate and explain procedures
- Use words that children can understand
- Answer questions honestly
- Reward patients after procedures
- Provide consistent staff for the patient and their families
- Avoid isolation unless medically indicated
- Provide as much care as possible at home rather than in the hospital
- Hypnosis may help some children to cope and cooperate with uncomfortable procedures.
- Make sure children as well as parents are aware of long term needs i.e. hormone replacement therapy
- Provide distraction tools for pain management. See www.buzzy4shots.com
- Encourage expression of feelings through words and drawings.
- Provide support groups for both patients and their families
- May need to involve social work, psychologist and or psychiatrist
- Be compassionate.
- Allow patients to feel empowered and in control.
- Give them permission and acknowledge the right to be angry
- Be sensitive to the fatigue that cancer patients develop after surgery and treatments.
- Create space for privacy especially with teenagers.
- Be aware of cultural differences regarding illness and disease
- Create a sense of hope and focus on day to day recovery
- Remind patients that they are not alone and there are others with the same cancer
- Provide help with the transition to home from the hospital. Fear is normal.
- Utilize pastoral care.
- Provide information to the patient and her family about her diagnosis, treatment plan and prognosis.
- Talk to parents about her level of understanding and reinforce information in age appropriate terms
- Be honest about why surgery is necessary and that it is not her fault that she is sick
- Speak in a soft voice
- Encourage her to continue with her school work and provide tutoring if possible
- Involve the patient’s school in tutoring so they will be understanding and supportive
- Keep the sense of “Hope” alive
- Focus on positive outcomes
- Discuss life after cancer
- Provide continued encouragement for both the patient and her family