Support Groups for Parents of Children with Hypoxic-Ischemic Encephalopathy
Babies born who develop hypoxic-ischemic encephalopathy (HIE) usually spend their early hours, days, or weeks in the neonatal intensive care unit (NICU). Childbirth is a very stressful occasion even with uncomplicated deliveries. Most normal babies go to the regular nursery and are released to their parents within 24- 48 hours. The NICU is a very intimidating place with all the technology, equipment, and scary procedures. Instead of bottle or breastfeeding, the parents will see their child undergo gavage which is a feeding tube placed directly down the esophagus in order to feed an infant who is too ill or premature to suck or swallow. Bilirubin lights, little-covered bassinettes, oxygen therapy, and complicated monitoring systems are very confusing to the worried parents. The baby-parent bond is limited to brief encounters if at all. It became apparent that additional emotional and educational support was needed for these parents. Hospitals offer psychological and educational support. However, there is increasing evidence that peer-to-peer support groups are very helpful in reducing stress and improving understanding of the HIE experience in the NICU.
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There are multiple types of these groups. Some are in-person, or via telephone, others are veteran parent systems where a parent who has experience with HIE and the NICU develop a relationship for mutual support and understanding. Internet parent and veteran support groups are additional ways to learn, stay connected, share stories, ask non-medical advice, and receive emotional support. These groups minimize the isolation from family and friends who might not know what to do or say in such grave circumstances. Parents can help other parents to be advocates for their child and be proactive in learning everything possible about HIE and its treatment and prognosis.
Parents who receive peer support benefit in many ways. Confidence, self-esteem, and acceptance are increased. Parents who cope better are better able to nurture their sick child which decreases the chance of failure to thrive and shortens hospitalizations. There is a decrease in stress, anxiety, depression, and post-traumatic stress disorder in those parents who participate in a parent or veteran support groups. Professional help is offered in all cases and having a support group can lessen the fear or embarrassment of needing to seek professional help. Groups such as these are more likely to encourage professional help. Our resource database will help you find Peer-to-Peer groups in Ohio.