The information on this page will help you understand the parents role as an advocate for their child and what works best when advocating.

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What is advocacy…

What is advocacy in a medical setting?

Advocating means being a voice for your child. Being an advocate is about promoting your child’s rights, needs and interests.

You know and understand your child better than anyone else and can help make sure the best decisions are made for your child.

By improving advocacy skills, parents can learn to speak confidently on their child’s behalf  and will be better able to:

  • Develop a mutual understanding with the medical team of what life is like for the child and family at home.

  • Develop and maintain a focused medical plan.

  • Create a more supportive pathway and open channels of communication following discharge.

  • Have consistent communication with local community supports

  • Experience less stress and frustration.

What works well in advocacy…

There are some things you can do to be a strong and confident advocate for your child. Keep reading to learn more.

 

Making sure you understand your child’s disability or diagnosis helps you understand the options for care or medical treatment for a child with the condition.

Making sure you understand your child’s disability or diagnosis helps you ask educated, informed questions. To help with this you could request medical papers, reports and recommended readings from your medical team)

 

Tip: Join organisations , peer support groups or organizations which are specific to your child’s illness.

  • To advocate for your child you need to know who to talk to in the hospital.
  • Ask for people’s names and roles, ask for phone numbers and clarify the best way to contact them.
  • Try to meet members of the team during outpatient admissions and and admissions

Knowing who to talk to is sometimes not enough. Parents need to know the rules that govern practice within the hospital setting. The hospital has guidelines, policies and procedures in place.

  • You can ask the care team about formal policies and practice within the hospital.
  • Access the hospital website for hospital policies.
  • Join parent and patient groups and forum’s
  • Access your child’s medical information if you feel it would help

  • Keep written records of appointments, and phone-calls
  • Keep written correspondence such as consultant reports.
  • Keep a list of contact details and names.
  • Keep a copy of emails you send and receive
  • Keep a meeting notebook or notebook during admission.
  • Keep a phone log with dates, times and notes on important conversations.

The way you speak to others has a direct relationship to how they will interact with you. Some tips for good communication:

  • Keep the focus on your child and your child’s diagnosis and needs – Give examples where possible.
  • Listen and Ask questions – don’t be afraid to ask for clarification.
  • Be open to problem solving together.
  • Don’t be afraid to discuss timelines and expectations.
  • Don’t be afraid to ask for a review date or follow-up appointments.

Know your rights

When advocating for your child, it is useful to know what is the standard of care that you should expect when you and your child are in hospital.  There are many guidelines which can support you in this regard. 

We highlight here three of the most relevant sources of information for parents on rights and standards relating to healthcare for children.

Probably the most important and high level statement is taken from the United Nations Convention on the Rights of the Child (UNCRC). Article 24 of the Convention says: States Parties recognise the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.

Read more here: United Nations Convention on the Rights of the Child

At a European level there is a European Charter developed by the European Association for Children in Hospital (EACH), which lays out in 10 points, the rights of sick children and their families before, during and after a stay in hospital and in other healthcare services.

Read more here: EACH Charter

In Ireland, the HSE has developed a specific charter relating to children’s healthcare. The National Healthcare Charter for Children is a Statement of Commitment by health services on healthcare, rights, expectations and responsibilities. It describes ten key principles in relation to the provision of healthcare for children in Ireland. The Charter aims to ensure that children receive high quality healthcare which is both appropriate to their needs and circumstances and acceptable to them and their families.

Read more here: HSE National Healthcare Charter for Children

Resolving disagreements…

Most decisions about your child’s care will be decided together by you and your child’s team, but occasionally you may find that you disagree with the decisions made.

When parents and agencies or service providers disagree, there are things you can do or say that will help the disagreement be solved more quickly and amicably, no matter which process is used.

Tips during a disagreement

  • Try to remain calm and respectful. The way you speak to others has a direct relationship to how they will interact with you

  • Try to separate the person from the problem.

  • Confide in someone, for example a medical social worker, psychology, clinical nurse manager (CNM), clinical nurse specialist (CNS).

  • Ask for medical social worker support – they can help to navigate the situation, to advocate for the child and family, to arrange meetings and help resolve a disagreement,

  • Don’t let feelings, incidents, experiences fester – you have to tell someone how you are feeling – a situation can’t be resolved if you don’t share how you are feeling.

  • Ask for a 2nd opinion. In complex situations these are normal things to ask for as long as delays will not be detrimental to your child. You should never be scared to discuss this with your consultant – open communication is key!

Resolving disagreements – hospital feedback and complaints

  • Hospitals welcome your views on the service and care they provide to children and families. At times, challenges, stresses and frustration can arise. It is important to share problems and concerns so issues can be addressed and to avoid similar issues for future families.

  • What can you do to share concerns

    • Share your concern with Nurse Manager on the ward, or consultant or other supervisor. You may be able to solve a concern without making a formal complaint.
    • Make a formal complaint to the hospital feedback and complaints officer or to HSE Your Service Your Say.

  • See our complaints and feedback section to learn more about how to make a complaint.