Bronwyn Hemsley

Without AAC: The stories of unpaid carers of adults with cerebral palsy and complex communication needs in hospital

Many adults with cerebral palsy and complex communication needs rely upon the support of their unpaid carers when they are in hospital. In this paper, the authors present some of the findings of a larger qualitative study of the experiences of unpaid carers of hospitalized adults with cerebral palsy and complex communication needs who did not have access to their usual augmentative and alternative communication (AAC) systems. Drawing upon the stories of unpaid carers, communication issues associated with cerebral palsy and complex communication needs and the absence of AAC are discussed. Such information can be used to assist AAC specialists, hospital staff, and hospital policy developers to improve care provided to not only people with cerebral palsy and complex communication needs, but also to other people who are unable to speak in hospital.

Professionals’ views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital

Abstract Background The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital. Method We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants. Results Participants highlighted the family carers’ expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care. Conclusions Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised.

'We need to be the centrepiece': adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital.

Purpose. The aim of this study was to explore the perceptions of adults with cerebral palsy and complex communication needs (CCN) on the roles and needs of their family carers in hospital. Method. As part of a larger study we conducted one focus group with six adults with cerebral palsy and CCN who participated in the group using a variety of augmentative and alternative communication methods. Results. Participants explored why and how family carers become involved in care in hospital, what this care involves, and how this impacts upon themselves as patients and on their family carers. Reasons underlying their dependence upon family carers during a hospital stay were outlined, particularly the carers role in communication, information exchange and access to essential daily care. Strategies to improve the experience for family carers in hospital were discussed. Conclusion. Involvement of family carers of people with cerebral palsy and CCN during an inpatient hospital stay is complex. Although they depend upon others for communication support, these individuals with CCN wish to be treated as adults in hospital and included in decisions about their healthcare. They want to be involved in the education of hospital staff, and to communicate directly with hospital staff.

A Metasynthesis of Patient-Provider Communication in Hospital for Patients with Severe Communication Disabilities: Informing New Translational Research

Abstract Poor patient–provider communication in hospital continues to be cited as a possible causal factor in preventable adverse events for patients with severe communication disabilities. Yet to date there are no reports of empirical interventions that investigate or demonstrate an improvement in communication in hospital for these patients. The aim of this review was to synthesize the findings of research into communication in hospital for people with severe communication disabilities arising from lifelong and acquired stable conditions including cerebral palsy, autism, intellectual disability, aphasia following stroke, but excluding progressive conditions and those solely related to sensory impairments of hearing or vision. Results revealed six core strategies suggested to improve communication in hospital: (a) develop services, systems, and policies that support improved communication, (b) devote enough time to communication, (c) ensure adequate access to communication tools (nurse call systems and communication aids), (d) access personally held written health information, (e) collaborate effectively with carers, spouses, and parents, and (f) increase the communicative competence of hospital staff. Currently there are no reports that trial or validate any of these strategies specifically in hospital settings. Observational and evaluative research is needed to investigate the ecological validity of strategies proposed to improve communication.

Aim, fire, aim—Project planning styles in dynamic environments

Rapidly changing environments are a newly recognized and increasing challenge in the field of project management. Traditional prescriptive approaches, oriented around process control, are considered suboptimal in meeting this challenge. In this article, the authors present an exploratory theory-building study aiming to identify the project management approaches used by experienced practitioners to respond to rapidly changing environments. The results of 37 semistructured interviews with 31 participants across 10 industries (i.e., construction, aerospace, international community development, pharmaceutical, defense, film production, start-ups, venture capital, research, and information technology) were analyzed according to the planning styles used. Results are discussed in the light of previous research, and a model for better management in rapidly changing environments is proposed.

Understanding mealtime changes for adults with cerebral palsy and the implications for support services

Abstract Background Changes in the swallowing capabilities of adults with cerebral palsy as they age may impact on their health, safety, and well-being. Method Thirty-two adults with cerebral palsy aged between 30 and 69 years participated in in-depth interviews about their experiences of changes in their swallowing and related management of their mealtimes within the last two years. A constant comparative qualitative analysis of the interviews elucidated the changes they experienced. Results Changes included increased coughing and choking, digestive or gastro-oesophageal symptoms, diet modification, loss of independence with psychosocial consequences. Participants reported unsatisfactory collaboration with service providers over mealtime management decisions and interventions. Conclusions Adults with cerebral palsy may experience gradual changes in their swallowing and mealtime capabilities from as early as 30 years of age. Regular collaborative assessment and involvement of all stakeholders in decisions are important to facilitate compliance with recommendations, ongoing safety, and optimal well-being.

Review of the literature on the use of social media by people with traumatic brain injury (TBI)

Abstract Purpose: To review the literature relating to use of social media by people with a traumatic brain injury (TBI), specifically its use for social engagement, information exchange or rehabilitation. Method: A systematic review with a qualitative meta-synthesis of content themes was conducted. In June 2014, 10 databases were searched for relevant, peer-reviewed research studies in English that related to both TBI and social media. Results: Sixteen studies met the inclusion criteria, with Facebook™ and Twitter™ being the most common social media represented in the included studies. Content analysis identified three major categories of meaning in relation to social media and TBI: (1) risks and benefits; (2) barriers and facilitators; and (3) purposes of use of social media. A greater emphasis was evident regarding potential risks and apparent barriers to social media use, with little focus on facilitators of successful use by people with TBI. Conclusions: Research to date reveals a range of benefits to the use of social media by people with TBI however there is little empirical research investigating its use. Further research focusing on ways to remove the barriers and increase facilitators for the use of social media by people with TBI is needed. Implications for Rehabilitation Communication disabilities following traumatic brain injury (TBI) can be wide-ranging in scope and social isolation with loss of friendships after TBI is common. For many people, social media is rapidly becoming a usual part of everyday communication and its use has the potential to increase communication and social participation for people with TBI. There is emerging evidence and commentary regarding the perceived benefits and risks, barriers and facilitators and purposes of use of social media within the TBI population. Risks associated with using social media, and low accessibility of social media sites, form barriers to its use. Facilitators for social media use in people with TBI include training the person with TBI and their communication partners in ways to enjoy and use social media safely. There is minimal rigorous evaluation of social media use by people with TBI and scant information regarding social media use by people with communication disabilities after TBI. Further investigation is needed into the potential benefits of social media use on communication, social participation and social support with the aim of reducing social isolation in people with TBI.

The “Big 5” and beyond: Nurses, paid carers, and adults with developmental disability discuss communication needs in hospital

Adults with developmental disability and little or no speech need to communicate with nurses in hospital to (a) express physical needs, (b) discuss health, (c) convey intelligence and emotions, (d) connect socially, and (e) control the environment. All stakeholders need access to a variety of communication strategies to support communication of these needs.

Facilitated Communication and Authorship: A Systematic Review

Abstract Facilitated Communication (FC) is a technique whereby individuals with disabilities and communication impairments allegedly select letters by typing on a keyboard while receiving physical support, emotional encouragement, and other communication supports from facilitators. The validity of FC stands or falls on the question of who is authoring the typed messages – the individual with a disability or the facilitator. The International Society for Augmentative and Alternative Communication (ISAAC) formed an Ad Hoc Committee on FC and charged this committee to synthesize the evidence base related to this question in order to develop a position statement. The purpose of this paper is to report this synthesis of the extant peer-reviewed literature on the question of authorship in FC. A multi-faceted search was conducted including electronic database searches, ancestry searches, and contacting selected authors. The authors considered synopses of systematic reviews, and systematic reviews, which were supplemented with individual studies not included in any prior reviews. Additionally, documents submitted by the membership were screened for inclusion. The evidence was classified into articles that provided (a) quantitative experimental data related to the authorship of messages, (b) quantitative descriptive data on the output generated through FC without testing of authorship, (c) qualitative descriptive data on the output generated via FC without testing of authorship, and (d) anecdotal reports in which writers shared their perspectives on FC. Only documents with quantitative experimental data were analyzed for authorship. Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.

Tweet reach: A research protocol for using Twitter to increase information exchange in people with communication disabilities

Abstract Objective: To (a) outline the background to research evaluating Twitter use by people with severe physical and communication disabilities participating actively in online communication forums for increasing information exchange and (b) illustrate a range of potential methods that might be applied in furthering research on the use of social media by people with developmental and acquired communication disabilities. Methods: The literature on communication disabilities, augmentative and alternative communication, and social media research informed the rationale for and design of three studies investigating the use of Twitter by people with communication disabilities. Results: To date, there is little information in the literature about how people with a range of communication disabilities might use Twitter to increase their access to information and help them to feel knowledgeable and in control of their own lives. Conclusion: In this paper, three studies are proposed to investigate the use of Twitter by people with communication disabilities.