Talk: Me, My Family And Liver Disorders

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Elizabeth Nolan

Senior Psychologist
Our Lady’s Children’s Hospital,Crumlin.

Acknowledging and addressing the impact of Liver Disease on families at the various developmental stages.

 

Toddlers

  • Unable to consider long term consequences

  • Utterly dependent on parents

  • Effects after diagnosis such as grieving, increased worrying

  • Child manipulates the parent which creates a deterioration in behavior

  • Children take their cues from their parents, they cope how you cope.

Young Children

  • Are adaptable, flexible and assimilate to new situations

  • Childhood curiosity can lead to difficult questions arising

  • When a child begins to ask questions it is then time to answer

    • answer honestly

    • with an understandable explanation

    • keep up with routine

    • give information in advance e.g. inform about doctors appointment 1/2 days in advance

    • Firm but fair

Adolescents

  • Desire for independence conflicting with the demands of a chronic illness which requires adolescents to be more dependent on their parents

  • Necessary to be supportive and acknowledge difficulties

  • The fear of being different from their peers is a main concern

  • What may seem trivial to us can be a huge concern for a young person

  • Praise their good moments

  • Gradually increase their responsibility for personal health

  • Reinforce the idea that illness is not all encompassing – more in their life than liver disease

  • As a family focus on how to get Liver Disease into balance with your everyday routine

  • Requires teamwork, communication and collaboration as a family

  • Balance your health with your child’s and don’t neglect your needs.

 

 What happens after diagnosis?

  • Parents go through a process of grieving

  • Significant increase in parental anxiety

  • Parents worry about the child’s future

  • This can lead to a less consistent approach in behavior management

  • Parenting and discipline should be the same for children with a liver condition as for their siblings and peers without.

 

COMMUNICATION

  • Talk to child, teacher,  principle, medical team.

  • Working together to help meet your child’s needs

  • One shoe does not fit all.

 

Parental study

The study was conducted interviewing parents of children with Liver Disease.2 main themes emerged in the study.

  • Liver Disorders impacts the entire family

  • It is a process that requires constant adaptation

  • From these personal experiences it was observed that

    • the child and family are extremely resilient

    • the need to focus on your health as a parent

    • this allows you to put into place necessary supports for your child

Questions

Addressed the need of medical professionals to assist families with their jargon and communications between family and child

Necessary to acknowledge family life and be aware of it in medical practice in order to move forward in a family friendly manner