This small-scale qualitative study explores how children participate in their own child protection/child in need planning within a statutory setting in England. Their experience of participation and the impact that voicing their wishes and feelings had on outcomes are highlighted and discussed against a background of conflicting discourses of statutory safeguarding and empowering participation, barriers to engagement and hearing the child's voice.
This article focuses on two small groups of adult cystic fibrosis patients (from a larger sample) who, for very different reasons, do not self-care. These two distinct counter-narratives may be located at the extreme margins of a continuum of responses to the demands of body and society. They are described and contrasted here as controlled and chaotic and are dominated by ‘supportive’ and ‘unsupportive’ voices respectively. The patient’s own voice, by way of contrast, is often silent or silenced by these dominant others. Despite the loss of self that becomes evident in these narratives, limited sites of resistance remain as both sets of participants sought to disrupt, parody and subvert expectations to self-care with stories of ‘malingering’ and ‘self-neglect’. Finally, some practical suggestions are provided for social workers to engage patients whom might otherwise be regarded as ‘difficult’.
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.
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.
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.
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