How Do We Know Co-Created Solutions Work Effectively within the Real World of People Living with Dementia? Learning Methodological Lessons from a Co-Creation-to-Evaluation Case Study.

Living Labs (LL) are a novel and potentially robust way of addressing real-life health challenges, especially within the dementia field. Generally, LLs focus on co-creating through implementing the quadruple helix partnership as a user-centric approach to co-creating. In the context of this paper, the users were people with dementia and their informal carers. LL are not necessarily environments that evaluate these co-created innovations within the real world. Considering this disconnect between co-creation and real-world evaluation, this paper, as a critical commentary, will reflect on the methodological lessons learnt during the development of an LL model aimed at addressing this discrepancy. The LL at Liverpool John Moores University (LJMU) was commissioned to co-create and then evaluate a new Dementia Reablement Service. The case study findings revealed that the Dementia Reablement Service had a positive impact on the quality of life of people with dementia, suggesting that the service is a catalyst for positive change. In addition, the critical learning from this case study highlights the potential role of LLs in seamlessly co-creating and then evaluating the co-created solution within the real world. A benefit of this way of working is that it provides opportunities for LLs to secure access to traditional research funding.

Factors Affecting the Participation of Physically Disabled Children and Young People in Out-of-School Activities in the United Kingdom: A Qualitative Study.

Physically disabled children and young people (PDC&YP) face many challenges when participating in out-of-school activities. PDC&YP should have the same choices and opportunities as other C&YP: to forge friendships locally and to access out-of-school activities. However, PDC&YP have fewer opportunities than their non-disabled peers due to challenges such as access, support, and suitable provision. This multi-method qualitative study examined the factors affecting participation of PDC&YP in out-of-school activities. The perspectives of PDC&YP and parents were sought using a range of data collection tools. These included interviews, focus groups, and creative focus groups with 13 PDC&YP and 19 parents. Play-based creative focus groups were specifically designed for PDC&YP aged 7 to 17 years. The study demonstrated that PDC&YP enjoy specialist disabled activities to meet others 'like them' but want more local opportunities to do this. Some PDC&YP and parents felt they were not disabled enough for 'disabled' activities but not able enough for mainstream. PDC&YP requiring personal care were a 'hidden' group who are at risk of missing out on experiences that they are entitled to. The study concludes by presenting the need to improve provision through disability awareness training and a co-ordinated partnership approach to be employed by the local authority to raise the profile of disability and 'bridge the gap' between service users and service providers. The social needs of children require the same focus and attention to aid their wellbeing and to enhance out-of-school lives.

Monkey's health service: an evaluation of the implementation of resources designed to support the learning of primary school-aged children in England about healthy lifestyles and NHS services.

The National Health Service Institute for Innovation and Improvement was established to help the NHS to improve healthcare by rapidly developing and disseminating knowledge and evidence about new ways of working. One example is the Emergency and Urgent Care Pathway for Children and Young People which focused on providing high quality and safe healthcare for children and young people requiring urgent or emergency treatment for the most common illnesses and injuries. Monkey's Guide to Healthy Living and NHS Services was developed to increase awareness of acute health services in primary school-aged children. This free resource was posted to every primary school in England. A process and impact evaluation was undertaken to explore how the resource was being utilized during 2013-2014. A small number of in-depth case studies were developed involving classroom-based observations and teacher interviews along with a much larger online survey which was emailed to all primary schools in England. On the whole, the resource was viewed as useful, engaging, and informative; with children, teachers, and other professionals particularly valuing the monkey puppet, video clips, and teacher resources. The National Evaluation highlighted that most respondents integrated the materials into the curriculum, used them as a one-off lesson, or developed their own innovative and strategic approaches to make the best use of the resources; almost two-thirds of schools who responded to the survey felt the resources led to pupils knowing about the available NHS services and healthy lifestyles; over half felt pupils were now more informed about the most appropriate services to use.

Adults with cystic fibrosis - responding to a new ageing population.

Worldwide, the life expectancy of adults with cystic fibrosis has increased substantially over the last two decades and cystic fibrosis can no longer be regarded as a paediatric condition. Adults with cystic fibrosis are becoming a new ageing population and are working, having families of their own and are likely to retire due to old age rather than ill health. Despite this progress, little is known about how people with cystic fibrosis are experiencing ageing with this long-term condition and how prepared they are for older age. This paper highlights the implications that ageing with cystic fibrosis may have for specialist health services and in particular the individual with cystic fibrosis, as well as providing pointers for future research.

Self-care and cystic fibrosis: a review of research with adults.

The issue of self-care is becoming increasingly central to both policy and practice in health and social care in the community. It is imperative therefore that research in this important area is drawn together and presented coherently so as to ensure that change can be informed by evidence and implemented sensitively. As cystic fibrosis (CF) has until recently been regarded as a paediatric condition, there is relatively little research that focuses on the self-care of adults. Although not entirely uncritical of traditional biomedicine, these studies focus on individual patient deficits and are directed primarily at facilitating their 'compliance'. After discussing some important methodological, evidential and theoretical limitations of this research, other recent CF literature will be considered that suggests the possibility of developing a 'social model' for self-care research. The proposed model is more pluralistic and less prescriptive than its predecessors and the resulting 'types' of self-care indicate that both old and new, mainstream and marginal discourses should co-exist. Indeed, recognising the legitimacy of distinct varieties of self-care not only guards against unwarranted moralising and pathologising but may also enable self-care support to be negotiated and tailored more appropriately.