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Communication partners experiences of communicating with adults with severe/profound intellectual disability through augmentative and alternative communication: A mixed methods systematic review.

ABSTRACT: People with severe/profound intellectual disability experience challenges in communicating and require their communication partners to adapt to their means of communication. Augmentative and Alternative Communication (AAC) is recognised as a potential means to meet their communication needs. Interventions need to be aimed at both the individual and their communication partners. We conducted a mixed methods systematic review of the literature to synthesise evidence on communication partners experience of communicating with adults with severe/profound intellectual disability through AAC. Eight publications met the inclusion criteria, they underwent thematic synthesis where four themes emerged. A shared commitment to communication partnership is fundamental for the effective and efficient use of AAC. However, there was a disconnect between communication partners perceptions of their roles and responsibilities. This review prompts further research to explore communication partners perceptions of their roles and responsibilities in the use of AAC with people with severe/profound intellectual disabilities.

SUBMITTER: Hanley E

PROVIDER: S-EPMC10647903 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

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Communication partners experiences of communicating with adults with severe/profound intellectual disability through augmentative and alternative communication: A mixed methods systematic review.

Hanley Edina E Martin Anne-Marie AM Dalton Caroline C Lehane Elaine E

Journal of intellectual disabilities : JOID 20220718 4

People with severe/profound intellectual disability experience challenges in communicating and require their communication partners to adapt to their means of communication. Augmentative and Alternative Communication (AAC) is recognised as a potential means to meet their communication needs. Interventions need to be aimed at both the individual and their communication partners. We conducted a mixed methods systematic review of the literature to synthesise evidence on communication partners exper ...[more]

PMID: 35850628

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Project description:BackgroundPeople with intellectual disabilities (IDs) face significant communication barriers when accessing health care services; they find it difficult to identify and describe conditions clearly enough to support practitioners in making an accurate diagnosis. In addition, medical professionals generally have little knowledge and understanding of the needs of people with ID, which may result in the use of consultation techniques that do not cater to their patients' skills.ObjectiveThis review aims to identify and synthesize the literature on alternative and augmentative communication technologies that are used to support adults with mild ID during the exchange of information with medical practitioners.MethodsWe performed a scoping review of studies published in English that describe the technologies that are used to promote communication with patients with mild ID during medical consultations. The databases searched were PubMed, ACM Digital Library, and Google Scholar. A qualitative framework-based approach was used to synthesize the data and discern key recurring themes across the identified literature.ResultsOf the 1557 articles screened, 15 (0.96%) met our inclusion criteria. The bulk of the communication aids used focused on low-tech solutions, including patient passports, note-based prompts, Talking Mats, health diaries, and easy-read information sheets. Their influence on current practice ranged from advancing medical professionals' knowledge of the health and communication needs of people with ID to increasing interagency collaboration, patient advocacy skills, and health promotion activities. The major barriers to the implementation of low-tech aids were a lack of portability and increased maintenance efforts. Only 3 studies explored the use of mobile apps to promote communication. Their findings indicated that high-tech solutions offer greater customization with regard to the accessibility and health care needs of people with ID.ConclusionsAlternative and augmentative communication technologies have the potential to increase the quality of care provided to patients with mild ID; however, little work has been carried out in this area. Greater emphasis must be placed on (high-tech) two-way communication aids that empower patients to become involved in decisions regarding their care. Quantitative evaluation methods should be used to discern the true benefits of such aids, and researchers should describe their study protocols in depth to promote replication and generalizability.

Project description:BackgroundIn Germany, clear care pathways for people without natural speech who require augmentative and alternative communication (AAC) are currently lacking. Therefore, AAC is often not sustainably implemented in everyday life. For this reason, a complex intervention was developed that supplements existing AAC consultation with additional AAC training, AAC therapy, and case management. This article presents the results of the process evaluation of the complex intervention. It examines (1) how caregivers and AAC consultants rate the intervention (2), which contextual factors influence its implementation, and (3) the acceptance, use competence, and use of the new AAC system.MethodsThe process evaluation used a mixed methods design. Quantitative data were collected with a longitudinal survey of caregivers of AAC users in the intervention and comparison groups at three time points (T0: after AAC consultation; T1: 4 weeks after AAC system receipt; T2: 4 months after AAC system receipt). Semi-structured focus group interviews were conducted with caregivers of AAC users and with AAC consultants. The quantitative data were analysed descriptively and with nonparametric mean value comparisons. The qualitative results were analysed using structured qualitative content analysis.ResultsThe evaluation and presentation of results were based on the Medical Research Council process evaluation guidance by Moore et al. The intervention elements were rated positively. AAC training and therapy enabled the participants to use the AAC system effectively in different contexts. Case management provided support, particularly in the event of problems in the care process. However, the results also show the heterogeneity of the intervention, as it depended on various contextual factors. Overall, acceptance, use competence, and use of the AAC system were rated higher in the intervention group than in the comparison group.ConclusionsThe process evaluation illustrates various contextual factors that can influence the implementation of the AAC intervention. The results highlight the potential of the intervention to improve AAC care and establish a sustainable use of AAC systems in everyday life. In addition, the process evaluation provides indications of how AAC interventions can be adapted for successful implementation.Trial registrationGrant number 01NVF17019.

Project description:Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs.Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved.Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an 'opening up' of communication that recognized the child's strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention.Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers' experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale.

Dataset Information

Communication partners experiences of communicating with adults with severe/profound intellectual disability through augmentative and alternative communication: A mixed methods systematic review.

Publications

Communication partners experiences of communicating with adults with severe/profound intellectual disability through augmentative and alternative communication: A mixed methods systematic review.

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