Making a voice heard: evaluation of a new service delivery in augmentative and alternative communication through qualitative interviews with people without natural speech.

OBJECTIVE: Due to communication barriers, people without natural speech who use augmentative and alternative communication (AAC) are rarely interviewed about their healthcare needs, expectations, and experiences. This qualitative interview study aims to investigate how AAC users evaluate a new service delivery (nSD) in AAC care in Germany. RESULTS: We conducted 8 semi-structured qualitative interviews with 8 AAC users. The results of the performed qualitative content analysis show a positive evaluation of the nSD among AAC users. Contextual factors were identified that seem to hinder the achievement of the intervention goals. These include caregivers' prejudice and inexperience with AAC and an unfavourable environment in which AAC is used.

Burden of informal caregivers of people without natural speech: a mixed-methods intervention study.

BACKGROUND: People with disabilities and without natural speech often rely on care provided by informal caregivers. The caregiving situation of these informal caregivers has been poorly researched. The objectives of the study are 1) to identify stressors, resources, and coping strategies among informal caregivers of people without natural speech and 2) to examine whether a complex intervention in augmentative and alternative communication (AAC) that is not primarily tailored to the needs of informal caregivers can reduce care-related burden. METHODS: The main components of the AAC intervention were (1) initial counselling session, (2) 4 AAC training sessions, (3) 20 AAC therapy sessions and (4) accompanying case management. The control group received only the initial counselling session. Within a quasi-experimental intervention study, survey data on self-perceived burden (Burden Scale for Family Caregivers, BSFC-s) from n = 154 informal caregivers of people without natural speech were collected at three time points between June 2018 and April 2021 from a postal survey. Qualitative interviews with n = 16 informal caregivers were conducted. RESULTS: Caregivers reported various stressors such as limited communication with the cared-for person and concerns about the living situation in adulthood. Diverse resources and effective coping strategies, which the caregivers refer to when dealing with stressors, could also be identified. Burden was significantly reduced in the intervention group compared to the control group. According to the results of the qualitative study, AAC use led to better communication skills and a reduction in behavioural problems and thus a decreased burden. CONCLUSIONS: The AAC intervention seems to have a positive impact on self-perceived burden. Linkages between intervention components and burden reduction as well as stressors and coping strategies could be identified and provide an evidence-based foundation for developing future holistic interventions for families with individuals without natural speech. TRIAL REGISTRATION: German Clinical Trials Register (DRKS); ID: DRKS00013628 (registered on 05/02/2018).

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

OBJECTIVE: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. DESIGN: A cross-sectional survey. SETTING: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. PARTICIPANTS: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. MAIN OUTCOME MEASURES: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). RESULTS: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=-0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). CONCLUSIONS: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech. TRIAL REGISTRATION NUMBER: DRKS00013628.

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

INTRODUCTION: The 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 ANALYSIS: In 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 DISSEMINATION: Data 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 NUMBER: DRKS00013628.