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Parenting a child who needs AAC (summary)

Parent
of
child
who
needs
AAC

What was the aim of the study? This study considers the experiences of British parents whose children have need of AAC. It focuses on how children's need and use of AAC influences family life and communication.

Why was the paper written? Previous findings, based mainly on research performed in the United States, suggest that families are very important to interventions for communication impairment. The relationship between caregivers and professionals of children who use AAC is central to interventions, as professionals must support and communicate with caregivers. Cultural differences between families and professionals can also have an effect on AAC intervention.

Though the perspectives and experiences of parents are a key component of successful AAC intervention, professionals may have difficulty accessing these views. This paper makes this information available to interested parties.

What did the authors do? The authors arranged eleven semi-structured interviews with parents and caregivers of children who use AAC. The interviewer was a school teacher unknown to the participants so that parents could express their ideas about speech and language therapy freely. Interviews began with a discussion of a typical day for a child who uses AAC and could have included information on a child's communication and its importance, AAC and speech and language therapy.

The researchers used a method called thematic analysis to analyse the interview data. This method is a six-stage process that results in Basic Themes that are grouped into Organizing Themes, which are placed under Global Themes. These Global Themes reflect major issues that came across from the interviews.

What did they find? The authors identified three Global Themes from the interviews:

1. CHILD'S COMMUNICATION AND INTERACTION

This theme included parents' ideas about and experiences of their children's communication. It had six Organising Themes:

A. How parents communicate with their children and about what. This sub-theme encompassed findings that children often had many different modes of communication, and some parents were responsible for developing communication systems. Parents often communicated with their children about everyday wants and needs but found it more difficult to cover things that happened outside the home. Parents showed knowledge of communication strategies for their children but some admitted that not all these strategies would be recommended by professionals and were rather used for speed or simplicity. Parents empathized with their children and included them in family conversations.

B. Child's level of communication. This sub-theme showed that parents could describe and evaluate their children's skills and difficulties.

C. Comprehension and intelligibility difficulties. This sub-theme showed that parents were concerned about barriers to communication such as their own understanding.

D. How the child communicates choices. This sub-theme revealed that parents have a system to enable their children to make choices, and this is an important aspect.

E. Impact of the child's personality. This sub-theme demonstrated that all parents described their children's personalities and the impact of personality on communication.

F. Child's social inclusion or exclusion. This sub-theme showed that parents thought communication skills impacted on social inclusion.

2. WIDER SOCIETAL ISSUES

Parents had ideas about wider societal issues that affected them. This theme had two Organizing Themes:

A. Social attitudes toward AAC. This sub-theme demonstrated that adults familiar with the children responded positively and attempted interaction while unfamiliar adults were less positive about AAC.

B. Financing of AAC. Parents often mentioned lack of money as a limiting factor of facilitating AAC and speech and language therapy.

3. PARENTS' VIEWS AND EXPERIENCES

Parents of children who need AAC mentioned pressures and issues, which were grouped into six Organizing Themes:

A. Parent as expert. Parents reported close relationships with their children and high levels of knowledge about their children's conditions. Sometimes they sought out certain knowledge and other times it was offered to them. Some parents wanted to be treated as experts on their children, and some viewed support from other parents as important.

B. Decision-making in AAC. Experiences of the extent and desire to be involved in decisions about communication varied, as did the amount and timeliness of information from professionals.

C. Parents' views on services. Some parents expressed concern about the quality and quantity of speech and language therapy, and some felt that professionals needed a better background in their own experiences.

D. Parents' reflections on communication. Parents reflected on their children's communication and none of them were concerned about introducing their children AAC; some wished it had been available earlier. High-tech communication aids could be difficult to implement, and parents tried to understand their children's feelings about communication impairment.

E. Parents' feelings and emotional responses. Parents expressed feeling isolated, devoting time and energy to their children's needs, feeling guilt and frustration about limits to their time and prioritizing their children's communication.

F. Demands on parents. Many parents felt they were not given sufficient information about AAC and that learning to communication via AAC involved considerable effort. Some parents felt they had to be 'pushy' in order to access services for their children.

Conclusions: The information that parents gave in interviews demonstrated that parents have extensive knowledge and understanding of their children and their children's communication abilities and limitations. The research showed that parents could benefit from professionals' explicit acknowledgement of the unique demands their situation makes on them and consideration of their child as an individual.


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Added to site August 2013


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