Parenting a child who needs AAC - Marshall, J., & Goldbart, J. (2008)

Summary of the paper

Apart from having a key role in supporting the use of AAC systems in the community, parents also have extensive knowledge and understanding of their children, which professionals in educational or healthcare setting might not be aware of e.g. their personality, communication barriers outside of educational (/healthcare) settings, main communication partners and topics in the community etc. These are important factors to take into account when deciding the most suitable AAC system as well as its content i.e. vocabularies/ phrases included. Therefore, it is important to understand parents' views and experience of supporting their children to use AAC system.

Marshall and Goldbart (2008) used semi-structured interviews to explore parents', whose children are currently using/ will be using AAC, experiences on how the use of AAC system has impacted on family life and communication, in the UK.

Factors affecting parents' involvement includes:

• Already carrying/ facing heavy burden that comes with living with & supporting children with communication (and additional) needs;

• Financial burden e.g. purchasing the suitable device

• Having an additional responsibility to act as an interpreter when their children communicate with other, less familiar, people;

• Difficulties accessing SALT and other services - meaning that support to implement the use of AAC might not be well-established.

Other significant information that parents mentioned:

• Some parents felt that the importance of communication and AAC intervention need to be made more explicit. This may help parents to understand and be more likely to follow professionals' advice, instead of choosing speed and simplicity and compromising communication opportunities/ opportunities for practising using AAC system for communication. With better understanding of the use of AAC systems, parents can also feed back to clinicians about what vocabularies might be more relevant to the young person's life.

• Parents have varied opinions on both how much they were involved in making decisions about their children's communication and how much they wished to be involved.

• Some parents wished for professionals to acknowledge and show awareness of other burdens that they might be facing in living with and supporting children with communication (and additional) needs. Supporting the young person's communication might not always be of top priority and their engagement with intervention might vary over time because of this reason.

Key take-aways

1. As professionals, we should take more time to get to know the families so that we can know more about the factors affecting their involvement of supporting their children's use of AAC systems. We can then problem-solve with families e.g. signpost them to different support groups for them to meet people who are having similar experiences.

2. We should also acknowledge and respect parents'/ the family's capacity to support the young person as they might not be ready to take on all the responsibilities or devote a huge amount of time and energy in developing expertise in one go/ at that particular point in life.

3. The importance of communication and use of AAC should be communicated to parents clearly and repeatedly. Parents might not be ready to take in all the information at once. However, by repeatedly providing the information, we can increase the chance getting all the important information across.

Linking research to practice

• Professionals should understand and acknowledge that sometimes supporting communication will not be the family's priority and this should be discussed with the family. It would be beneficial to also discuss with the family as to what therapy format would best suit the family e.g. meeting once a month or once every three months or a block of intervention followed by a few months break to allow time for the family to try out the strategies and intervention. This should be communicated clearly with the family so that they know that support is available and clinicians not contacting the family for a period of time does not necessarily mean that clinicians have 'forgotten' about their children.

• Important information (e.g. what is communication, importance of communication, what is AAC etc.) should be delivered repeatedly at the parents' level of understanding e.g. explaining technical terms, using real-life examples that's related to their children etc. Professionals should always first gauge parents' level of understanding on these information in order to ensure that we are supporting parents to gain more insights without sounding too repetitive and patronising.

Research paper:

Marshall, J., & Goldbart, J. (2008). ‘Communication is everything I think. ’Parenting a child who needs Augmentative and Alternative Communication (AAC). International journal of language & communication disorders, 43(1), 77-98.