Retinoblastoma Family Caregivers

Retinoblastoma is a type of cancer that affects the retina of the eye, typically in children under the age of five. For families that have had a child diagnosed with retinoblastoma, child care can become difficult. Family caregivers of retinoblastoma patients are often emotional about the diagnosis and treatment. Decisions such as which foods to feed the child and how to assist with aspects of development often take on increased significance and add uncertainty to daily care.

Family Caregivers Support Programs

Many hospitals offer group support programs for families of children that have been diagnosed with pediatric retinoblastoma and other cancers. These support programs can supply helpful information about daily care for retinoblastoma patients, and can introduce family caregivers to others in the area that are enduring similar situations. Support programs often offer an emotional respite for family caregivers and can be more helpful than other types of individual therapy or counseling. Support programs are also available online for families that are traveling to the administering hospital or that do not wish to take part in the hospital’s programs.

Retinoblastoma Physician Advice

The physicians that treat retinoblastoma patients are typically knowledgeable about the specific patient’s condition and will be able to provide more helpful advice concerning care than generic sources. Physicians may also be able to recommend programs that aid in childhood development or specialists that will be able to help with certain aspects of care. Family caregivers should inquire about daily care needs when speaking to physicians regarding retinoblastoma treatment and diagnosis.

Caregiver Emotional Counseling

It may be helpful for family caregivers to seek individual emotional counseling in addition to group support. Family caregivers may face emotional burdens regarding the pediatric retinoblastoma diagnosis, concerns about daily care, and other aspects of caring for a child with special needs. Family caregivers may also suffer from feelings of guilt for taking care of personal needs or other complex emotions. Emotional counseling may allow family caregivers to vent frustrations and overcome emotional difficulties.

Family Caregiver Assistance

Family caregivers may be able to find programs in the area that provide assistance with daily care for retinoblastoma patients, sometimes at a reduced cost. One of the major difficulties that family caregivers face is burnout and an inability to find time for self-care. Assistance programs may be able to provide valuable respite for overwhelmed family caregivers. Professional caregivers may also provide helpful advice for daily care of children that have been diagnosed with retinoblastoma.

Sources:

http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Retinoblastoma.aspx

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/retinoblastoma/education-resources/index.html

http://www.mskcc.org/pediatrics/childhood/retinoblastoma/survivorship