Source: Aussie Deaf Kids (Adapted and reproduced with permission)
Parents are faced with all kinds of decisions throughout the life of their child. As the parent of a child with microtia & atresia, these decisions may be about choices that are new to you – most families know little about microtia & atresia when their child is born. Knowing you are making the right choices at the right time can often be clouded by stress or by the differing views of professionals, family and friends. The information you receive may be contradictory, vague or overwhelming. How can you make the right choices?
Why is informed choice important?
The issue of informed choice for families with a child with microtia & atresia is an important one. Parents often feel that they may have made different choices if they had been provided with all the relevant information about the options available to them. In the past, the kind of information parents received may have depended on where they lived or the knowledge, opinions and bias of the professionals they visited.
Each of the two words in “informed choice” highlights an essential aspect of the decision-making process. Parents need to be informed about their options, but this is not sufficient. Parents also need choices. The choices may not always be available in your area, state or counbtry but you need to know about them so you can weigh up all your options.
For example, most newborn hearing screening programs subscribe to the principle of informed choice. However, putting this into practice may not always be a reality. Some professionals may have strongly held views about what might be best for your child. Limited funding, low staffing levels, shortage of skills and knowledge can place considerable pressure on service providers. Each of these factors may make professionals reluctant to tell parents about all their options and this can inhibit the parents’ ability to make informed choices.
Understanding informed choice
The purpose of informed choice is to ensure that all parents decide for themselves on the care that best suits the needs of their child and family. Every family is different and the choices you make should reflect your family’s desires, beliefs and values.
This does not mean you need to make these decisions on your own. The relationship you have with the professionals looking after your child is an important one and should be seen as a partnership of two experts. Professionals will have information on treatment options and alternatives and you are the expert on your child and his or her needs. The professional’s role is to present you with your options, focus on key issues and help you think through the decision-making process.
Reliable information is crucial if you are to make an informed choice. There are many ways for you to find the information you need:
- Information from professionals and service providers who have knowledge and experience with microtia and atresia
- Written information and the internet
- Talking to other parents of children with microtia & atresia
- Websites, blogs, online groups
- Discussing your options with family and friends.
Wherever you find information, it must be reliable, up-to-date and should be based on good research. You are best getting information directly from the experts in each separate field (e.g. hearing loss, ear reconstruction, atresia etc). However, there are a number of areas (such as unilateral hearing loss and aiding options) where research is ongoing. Research may not always be conclusive and you may not always be able to find definite answers.
The information you get from other parents may not be based on research but on the “lived experience”. This can provide you with some valuable insights into how a chosen option may affect your child and family. Remember this information may be coloured by the views and experiences of the individual, so do not rely on this information alone. Compare their experiences and information with other sources.
You should feel confident that you understand the information and what each option means for your child and family now and in the future. Don’t be afraid to ask questions. When someone uses a word you don’t understand, ask that person to explain what the word means. Discuss the information with a trusted professional and ask questions. Don’t be afraid to say what you think and know.
- What are the options?
- What would happen if I did nothing?
- What are the possible benefits, risks, advantages and disadvantages of each option?
- How would this decision affect my child?
- How would this decision affect our family?
- How much time do we have to make a decision?
- Have I got enough information to make my decision?
Making decisions is difficult
Making decisions is not always easy and it can be tempting to think the professional knows best. Professionals are experts in their area of speciality and sometimes have strong views about one choice or another. You will find very few professionals who have accurate knowledge of all options available for microtia & atresia patients. You may therefore need to consult with several professionals who have specific knowledge on the specific choices available. This can be confusing and difficult at times. But you know your child and situation better than anyone. The choice should be yours alone. Trust your instincts as a parent and if you feel you need more time or more information, the professionals should help and support you in this.
Decisions are not set in stone. You can change your mind although some decisions are more difficult to change than others. Choices that are right when your child is young may no longer be appropriate as they grow. Don’t blame yourself if a previous decision has not worked out. You made the best decision you could at the time. You might want to look at other options now. A professional can help you to re-evaluate your options and support and guide you in making new decisions for the next stage of your child’s life.
Be an active decision-maker
Parents who participate actively in the decision-making process – by asking questions, giving their opinions and expressing concerns – make better decisions.
You can become an active decision-maker by seeking information about your options from a variety of sources. Prepare your questions before visiting or talking wiith professionals. Ask these questions and expect to receive answers. Some parents are reluctant to ask questions. They worry about appearing ignorant or are concerned about challenging the professional’s authority. Remember there is no such thing as a silly question. Be confident in your knowledge as a parent of your child and your ability to play an active role in the decision-making process.
What to do if your choice is not available
In order for parents to be fully informed of their choices and options, professionals should discuss all choices, even those that are not readily available to your family. It is not appropriate for the professional to filter or censor the information or gently lead you to make decisions that fit comfortably with the available options.
The reality is that the choice or option you decide is best for you may not always be available. There are a number of things you can do in this situation:
- Ask for support from your professionals to see if your choice can be made available.
- You could consider a compromise that you feel is acceptable.
- You could consider travelling to access the option you want or even taking the big step of moving to an area where the service you want is available.
- You could lobby for change. Many services for hearing impaired children in Australia were developed because parents knew about them and then lobbied governments and service providers to offer that service to their children. This is not an easy road and can take a lot of time and energy. You could consider meeting with other parents who want a similar service or product and make a case for it to be introduced in your area.
Before making a decision, ask yourself…
- Have I been told about all the options, not just those that are readily available in my area?
- Have I been told about the pros and cons of all the options, not just the view of the professionals working with my child?
- If some options are not available in my area, have my professionals been open and honest about the reasons for this and considered what we might do about it?
- Have I been given the opportunity to talk to sources of independent advice and support?
- What other support is available to help me fully understand the information and to discuss it and make choices for my family?
You can make informed decisions that reflect your family’s needs, beliefs and values when you have reliable information about all your options. This can be obtained from trusted sources of information and the unbiased support and guidance of the professionals working with your child.
- Adapted and reproduced with permission from Aussie Deaf Kids
- Informed Choice, Families and Deaf Children: Professional Handbook (2006). Retrieved June 4, 2009, from Early Support website: http://www.earlysupport.org.uk/
- Helping you choose: Making Informed Choices for You and your Child (2006). Retrieved June 4, 2009, from Early Support website: http://www.earlysupport.org.uk/
- Informed choice in Family Planning (2001). Retrieved June 4, 2009 from The INFO Project website: http://www.infoforhealth.org/pr/