Complex intervention in augmentative and alternative communication (AAC) care in Germany: a study protocol of an evaluation study with a controlled mixed-methods design

Abstract

IntroductionThe current practice of service delivery in Germany for people with complex communication needs (CCN) who are in need of augmentative and alternative communication (AAC) is characterised by diverse problems, including a lack of clarity in the responsibilities of the service providers involved. To address these issues a new service delivery model has been put in place, implemented in three AAC counselling centres for patients with a particular health insurance across Germany. The implementation of a new service delivery model aims to improve individualised service delivery. The model goes beyond standard care by adding case management, counselling, AAC training and, if needed, AAC therapy. This study aims to evaluate the effectiveness of this complex intervention.Methods and analysisIn consideration of the complexity of the new service delivery model, formative and summative evaluation will be conducted. The formative evaluation will provide data based on qualitative and quantitative assessments of the competences and perspectives of all involved stakeholders, including a proxy measurement of persons with CCN. The summative evaluation will include a controlled study design as the new service delivery model will be compared against the service delivery in an existing contract and against data gathered from caregivers of AAC users provided with standard care. With the exception of the individual interviews the data will be collected from proxies—that is, informal and formal caregivers.Ethics and disseminationData collection, storage and evaluation meet the currently valid data protection regulations. Consultation by the responsible data protection officer of the Oldenburg Medical School and a positive vote from its Ethics Committee were obtained prior to the start of the study. Dissemination strategies include the presentation of the obtained data and results in the form of publications and at conferences.Trial registration numberDRKS00013628.

“Finding Common Ground” – Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech

“…All components of the intervention and comparison groups were managed by the three AAC consultation centers participating in the project. 29 The formal caregivers (eg, teachers or speech and language pathologists) and informal caregivers (eg, parents or relatives) of the AAC users in the intervention group and in the comparison group were surveyed at three timepoints (T0=after initial AAC assessment and consultation; T1=4 weeks after AAC system receipt [after AAC training]; and T2=3 months after AAC system receipt [after AAC therapy]). Additionally, focus group interviews were conducted with informal and formal caregivers and AAC consultants of the intervention group.…”

“…In addition, the intervention aimed to standardize AAC care and to improve the implementation of AAC among all stakeholders. 29 The structure of the intervention and the involved active and passive stakeholders are presented in Figure 1 .…”

Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

“…Details on the German AAC and insurance system and the research project design can be found in the published study protocol. 31 …”

“…Practice partners from the cooperating counselling centres 31 with a lot of experience working with people who use aided AAC were involved in the planning, recruitment and instrument development of the study via regular meetings. A person who uses aided AAC is part of the team in one cooperating counselling centre and has also provided advice.…”

Ability-Based Methods for Personalized Keyboard Generation

“…This is because customizing these alternative access methods largely fails to fully address or compensate for the access barriers that individuals with severe motor impairments often face. Poor technical knowledge amongst caregivers and support staff (e.g., due to limited training [ 5 ]) and precise mounting requirements that necessitate manual device adjustments [ 6 ] are among the largest barriers to communication, despite these individuals being matched to a device that best fits their residual motor capabilities and use preferences [ 7 , 8 ]. Because of this, AAC users that require both alternative access and augmentative speech options are often excluded from successful use of AAC devices [ 9 - 11 ], contributing to the nearly one-third of patients who abandon their clinically prescribed AAC device in favor of less-effective dysarthric speech or manual gestures, among other communication methods [ 12 , 13 ].…”