Enabling public, patient and practitioner involvement in co-designing frailty pathways in the acute care setting.

BACKGROUND: Although not an inevitable part of ageing, frailty is an increasingly common condition in older people. Frail older patients are particularly vulnerable to the adverse effects of hospitalisation, including deconditioning, immobility and loss of independence (Chong et al, J Am Med Dir Assoc 18:638.e7-638.e11, 2017). The 'Systematic Approach to improving care for Frail older patients' (SAFE) study co-designed, with public and patient representatives, quality improvement initiatives aimed at enhancing the delivery of care to frail older patients within an acute hospital setting. This paper describes quality improvement initiatives which resulted from a co-design process aiming to improve service delivery in the acute setting for frail older people. These improvement initiatives were aligned to five priority areas identified by patients and public representatives. METHODS: The co-design work was supported by four pillars of effective and meaningful public and patient representative (PPR) involvement in health research (Bombard et al, Implement Sci 13:98, 2018; Black et al, J Health Serv Res Policy 23:158-67, 2018). These pillars were: research environment and receptive contexts; expectations and role clarity; support for participation and inclusive representation and; commitment to the value of co-learning involving institutional leadership. RESULTS: Five priority areas were identified by the co-design team for targeted quality improvement initiatives: Collaboration along the integrated care continuum; continence care; improved mobility; access to food and hydration and improved patient information. These priority areas and the responding quality improvement initiatives are discussed in relation to patient-centred outcomes for enhanced care delivery for frail older people in an acute hospital setting. CONCLUSIONS: The co-design approach to quality improvement places patient-centred outcomes such as dignity, identity, respectful communication as well as independence as key drivers for implementation. Enhanced inter-personal communication was consistently emphasised by the co-design team and much of the quality improvement initiatives target more effective, respectful and clear communication between healthcare personnel and patients. Measurement and evaluation of these patient-centred outcomes, while challenging, should be prioritised in the implementation of quality improvement initiatives. Adequate resourcing and administrative commitment pose the greatest challenges to the sustainability of the interventions developed along the SAFE pathways. The inclusion of organisational leadership in the co-design and implementation teams is a critical factor in the success of interventions targeting service delivery and quality improvement.

Supportive Relationships in Autism Spectrum Disorder: Perspectives of Individuals with ASD and Supporters.

This study explored 17 dyads of academically successful people with Autism Spectrum Disorder (ASD) and individuals who they identified as supportive. Qualitative methods, including in-depth interviews, participant observations, and document analysis, were used to study these supportive relationships. The purpose of the study was to develop a substantive grounded theory regarding supportive relationships within the lives of individuals with ASD. A dynamic model of supportive relationships emerged, with trust, unity, and support as the three core categories of these relationships. The data suggest that the quality of the relationship between an individual with ASD and the support provider can be a critical factor within effective support. These findings suggest that there is much yet to be learned about the social world of individuals with ASD.

An exploration of sensory and movement differences from the perspective of individuals with autism.

Parents, teachers, and people who themselves experience sensory and movement differences have consistently reported disturbances of sensation and movement associated with autism. Our review of the literature has revealed both historical and recent references to and research about sensory and movement difference characteristics and symptoms for individuals with autism. What is notably infrequent in this literature, however, is research that highlights the perspective of the individual with autism. If we wish to truly understand the experience of sensory and movement differences for individuals with autism, we must explore their experiences and perspectives. This study presents a qualitative analysis of more than 40 h in-depth inquiry into the lives of five individuals with the autism label. Data were sorted into six categories: perception, action, posture, emotion, communication, and cognition. The insights into sensory and movement differences and autism offered by these individuals was illuminating. We found that the data strongly supported the presence of disruption of organization and regulation of sensory and movement differences in the lived experience of these participants with autism. The present data suggests that in autism this disruption of organization and regulation is amplified in terms of quantity, quality, intensity, and may affect everyday life. These data contribute to a more expansive view of autism that incorporates the possibility that autism is a disorder that affects motor planning, behavior, communication, the sensory motor system, and the dynamic interaction of all of these.

Rethinking autism: implications of sensory and movement differences for understanding and support.

For decades autism has been defined as a triad of deficits in social interaction, communication, and imaginative play. Though there is now broad acknowledgment of the neurological basis of autism, there is little attention paid to the contribution of such neurological differences to a person's development and functioning. Communication, relationship, and participation require neurological systems to coordinate and synchronize the organization and regulation of sensory information and movement. Developmental differences in these abilities are likely to result in differences in the way a person behaves and expresses intention and meaning. The present paper shares our emerging awareness that people may struggle with difficulties that are not immediately evident to an outsider. This paper explores the symptoms of sensory and movement differences and the possible implications for autistic people. It provides a review of the history and literature that describes the neurological basis for many of the socalled behavioral differences that people experience. The paper emphasizes the importance of our acknowledgment that a social interpretation of differences in behavior, relationship, and communication can lead us far away from the lived experience of individuals with the autism label and those who support them. We suggest alternative ways to address the challenges faced by people with autism.

Properties of supportive relationships from the perspective of academically successful individuals with autism.

This qualitative study explored supportive relationships from the perspective of 5 academically successful individuals with autism. To ensure that data were rich and based on personal experience, participants with autism identified between 2 and 4 people with whom they had a successful supportive relationship. The participants in this study identified and described properties within these relationships. Analysis of in-depth interviews and documents using the constant comparative method revealed 6 properties of the successful supportive relationships: trust, intimacy, the presumption of competence, understanding, shared vision of independence, and good communication. Implications for research and practice are discussed.