Meaning, Value and Purpose of AACAACNCT02931669
Meaning, Value and Purpose of Augmentative and Alternative Communication (AAC)
An observational study of Meaning, Value and Purpose of AAC, run by University of Dublin, Trinity College at 1 site in Ireland.
Trial summary
The perception of disability has changed throughout history, and today, people who previously did not have a way to communicate are able to express themselves through Augmentative and Alternative Communication (AAC). However, the potential of AAC is not being fully realised and devices are often abandoned. Read more about this study
- Who is it for?
- Ages Up to 100 yearsHealthy volunteers can take part
- Conditions the study is for
- Meaning, Value and Purpose of AAC
- What is being tested?
- Qualitative Descriptive Study
- How many people
- 189 participants
- Where
- 1 siteIreland
- Study dates
- Oct 2016to 17 Sep 2017
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Up to 100 years
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Study population: There are 5 potential groups as previously outlined: Adults who use AAC, children who use AAC, family members, teachers, and health professionals. Most will receive the online survey link through professional groups and online forums. The children who use AAC and some teachers and family members will be accessed through local special schools.
Who may be able to join
- Those who use AAC (both children and adults), their family members and carers, and health professionals and teaching staff who work with AAC users.
- Children who use AAC will be aged between 4 and 18 years of age. There is no age limit on other participants
Who cannot join
- Those who do not meet the inclusion criteria. No other exclusion criteria have been applied.
Trial locations and contacts
1 site in 1 country.
About this study
Official title: What Does AAC Mean to You?: An Exploration of the Meaning and Value of AAC to Users and Stakeholders.(AAC: Augmentative and Alternative Communication)
The perception of disability has changed throughout history, and today, people who previously did not have a way to communicate are able to express themselves through Augmentative and Alternative Communication (AAC). However, the potential of AAC is not being fully realised and devices are often abandoned. It is therefore essential to hear the voice of those who use it and those who interact with them on a daily basis, in order to find out what the meaning, value and purpose of AAC is for them. This will support SLTs in directing intervention and establishing priorities, as well as in advocating for funding and acknowledging the voice of AAC users. The study uses a qualitative descriptive approach, using thematic analysis to establish emerging themes from surveys completed by AAC users, family members, health professionals, teachers, and face to face interviews with children who use AAC.
Read the detailed description
Research indicates that AAC (Augmentative and Alternative Communication) has the potential to change the lives of many people with complex communication needs, but is often under-utilised and/or abandoned. Therefore, the research aims to investigate the meaning, value, and purpose of AAC for different stakeholder groups, as well as to what extent these are shared or unique? This information will support Speech and Language Therapists to understand the meaning, value, and purpose of AAC for key stakeholders, and therefore adapt intervention to meet these needs. It can also support families considering AAC in decision making. Participants can also benefit through reflecting on what AAC means to them. It is also an important part of evidence based practice to listen to the voice of the client and family.
A qualitative descriptive study is proposed, utilising thematic analysis. The study will be implemented using a survey which will be presented in different formats (paper/online/face-to-face) depending on the stakeholder. It will investigate the perceptions of people who use AAC, family members, teaching staff and health professionals who work with AAC users. Family members, adult AAC users, teachers and health professionals will receive a link to an online survey, distributed by professional groups and charities. Parents of children attending local special schools will be given paper copies of the survey. Face to face interviews with up to 5 children who use AAC will also be carried out at local special schools, following consent from the parents. Interviews will be conducted by a trained Speech and Language Therapist using symbols to support communication via a Talking Mats style approach,and children will be accompanied by an adult. It is estimated that interviews will last between 20 and 30 minutes.
Participants filling in the paper or online survey are encouraged to write as much or as little as they like; it is estimated that it will take around 10 minutes to complete, although others may spend longer.
- Conditions
- Meaning, Value and Purpose of AAC
- Being tested
- Qualitative Descriptive Study
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Qualitative Descriptive StudyOther
| Study group | Role | What they receive |
|---|---|---|
| Adult AAC users | Will be accessed via online forums to fill in online anonymous survey link Receives: Other: Qualitative Descriptive Study | |
| Children who use AAC | Parents at local special schools will be given the opportunity for their child to participate in a face to face symbol based interview. They will give written consent and children's assent will also be obtained. Receives: Other: Qualitative Descriptive Study | |
| Family members | The paper version of the survey will be distributed among parents at local special schools for them to fill in at home with their families. Online groups of families will also be sent the online survey link. Receives: Other: Qualitative Descriptive Study | |
| Teachers | Teachers at local special schools will be given the paper survey forms. Online groups of teachers will receive the online link. Receives: Other: Qualitative Descriptive Study | |
| Health Professionals | Online groups of health professionals will receive the online link Receives: Other: Qualitative Descriptive Study |
What is being measured
The primary outcome is the main question the study is designed to answer.
Thematic Analysis of Survey Data
Measured: 08/2017
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted13 Oct 2016 (estimated)
- Study startOct 2016
- Primary completion17 Sep 2017
- Study completion17 Sep 2017
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Meaning, Value and Purpose of AACStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 189 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Dublin, Trinity College
- Sponsor type
- University, hospital or other
- Collaborators
- National Health Service, United Kingdom
- Responsible party
- Principal investigator, Denise Abraham, University of Dublin, Trinity College
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02931669
- Sponsor's protocol ID
- U Dublin TC
- Other IDs
- 200453
- Acronym
- AAC
- Status last verified
- Oct 2017
- First submitted
- 11 Oct 2016
- Last updated
- 27 Oct 2017
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 27 Oct 2017. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- What Does AAC Mean to You?: An Exploration of the Meaning and Value of AAC to Users and Stakeholders.(AAC: Augmentative and Alternative Communication)
- ClinicalTrials.gov ID
- NCT02931669
- Acronym / sponsor ID
- AAC / U Dublin TC
- Conditions
- Meaning, Value and Purpose of AAC
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 189 participants (actual)
- Lead sponsor
- University of Dublin, Trinity CollegeUniversity, hospital or other
- Collaborators
- National Health Service, United Kingdom
- Study start
- Oct 2016
- Primary completion
- 17 Sep 2017 (actual)
- Study completion
- 17 Sep 2017 (actual)
- First posted
- 13 Oct 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The perception of disability has changed throughout history, and today, people who previously did not have a way to communicate are able to express themselves through Augmentative and Alternative Communication (AAC). However, the potential of AAC is not being fully realised and devices are often abandoned. It is therefore essential to hear the voice of those who use it and those who interact with them on a daily basis, in order to find out what the meaning, value and purpose of AAC is for them. This will support SLTs in directing intervention and establishing priorities, as well as in advocating for funding and acknowledging the voice of AAC users. The study uses a qualitative descriptive approach, using thematic analysis to establish emerging themes from surveys completed by AAC users, family members, health professionals, teachers, and face to face interviews with children who use AAC.
Detailed description
Research indicates that AAC (Augmentative and Alternative Communication) has the potential to change the lives of many people with complex communication needs, but is often under-utilised and/or abandoned. Therefore, the research aims to investigate the meaning, value, and purpose of AAC for different stakeholder groups, as well as to what extent these are shared or unique? This information will support Speech and Language Therapists to understand the meaning, value, and purpose of AAC for key stakeholders, and therefore adapt intervention to meet these needs. It can also support families considering AAC in decision making. Participants can also benefit through reflecting on what AAC means to them. It is also an important part of evidence based practice to listen to the voice of the client and family.
A qualitative descriptive study is proposed, utilising thematic analysis. The study will be implemented using a survey which will be presented in different formats (paper/online/face-to-face) depending on the stakeholder. It will investigate the perceptions of people who use AAC, family members, teaching staff and health professionals who work with AAC users. Family members, adult AAC users, teachers and health professionals will receive a link to an online survey, distributed by professional groups and charities. Parents of children attending local special schools will be given paper copies of the survey. Face to face interviews with up to 5 children who use AAC will also be carried out at local special schools, following consent from the parents. Interviews will be conducted by a trained Speech and Language Therapist using symbols to support communication via a Talking Mats style approach,and children will be accompanied by an adult. It is estimated that interviews will last between 20 and 30 minutes.
Participants filling in the paper or online survey are encouraged to write as much or as little as they like; it is estimated that it will take around 10 minutes to complete, although others may spend longer.
Study design
- Observational model
- Other
- Time perspective
- Prospective
- Number of arms
- 5
| Arm | Type | Receives |
|---|---|---|
| Adult AAC users | – | Other: Qualitative Descriptive StudyWill be accessed via online forums to fill in online anonymous survey link |
| Children who use AAC | – | Other: Qualitative Descriptive StudyParents at local special schools will be given the opportunity for their child to participate in a face to face symbol based interview. They will give written consent and children's assent will also be obtained. |
| Family members | – | Other: Qualitative Descriptive StudyThe paper version of the survey will be distributed among parents at local special schools for them to fill in at home with their families. Online groups of families will also be sent the online survey link. |
| Teachers | – | Other: Qualitative Descriptive StudyTeachers at local special schools will be given the paper survey forms. Online groups of teachers will receive the online link. |
| Health Professionals | – | Other: Qualitative Descriptive StudyOnline groups of health professionals will receive the online link |
Who may qualify
- Ages
- Up to 100 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
- Study population
- There are 5 potential groups as previously outlined: Adults who use AAC, children who use AAC, family members, teachers, and health professionals. Most will receive the online survey link through professional groups and online forums. The children who use AAC and some teachers and family members will be accessed through local special schools.
Key inclusion criteria (2 listed)
- Those who use AAC (both children and adults), their family members and carers, and health professionals and teaching staff who work with AAC users.
- Children who use AAC will be aged between 4 and 18 years of age. There is no age limit on other participants
Key exclusion criteria (1 listed)
- Those who do not meet the inclusion criteria. No other exclusion criteria have been applied.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Qualitative Descriptive Study | Other | Adult AAC users, Children who use AAC, Family members, Health Professionals, Teachers |
Primary outcome
Thematic Analysis of Survey Data
Time frame: 08/2017
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 27 Oct 2017.
- Individual participant dataSharing planned: No
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Meaning, Value and Purpose of AAC, run by University of Dublin, Trinity College at 1 site in Ireland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 27 Oct 2017. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Ireland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Thematic Analysis of Survey Data (time frame: 08/2017). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 27 Oct 2017.