67 research outputs found

    Sexual expression in persons living with dementia in a nursing home context: A phenomenological inquiry

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    Introduction: Research shows that sexual expression provides emotional and physical benefits throughout life and does not diminish with age or loss of capacity (Rennie et al. 2017). Older persons, living in care home, including people living with dementia see themselves as sexual beings and with a continuous need and desire to embody sexual expression. However, evidence demonstrates that sexual needs of ‘residents’ living in nursing or care homes are not viewed as an important part of nursing care (Bauer et al. 2013). Sexual expression is often overlooked as an important part of life in persons with dementia and is still considered the most difficult ‘symptom’ of the behavioural and psychological symptoms of dementia (BPSD) model to manage by nurses (Tucker 2010). Aims and Objectives: This study aimed to generate new knowledge on the meaning of sexual expression in persons living with dementia for person-centred nursing practice and theory. This study also aimed to understand more about how sexual expression effects nurses working in care homes and how sexual expression influences the care of persons with dementia. Methodology: Drawing on existential phenomenology, and person-centred theory as well as new principles drawn from the sensuous literature, I had conversations with four persons living with dementia to explore the nature and meaning of sexual expression. I was able to explore this sensitive topic in a dignified and respectful way by working with a rigorous process consent framework that enabled inclusion of adults with incapacity. I observed eleven nurses and carers and had dialogues with them at work to find out about their experiences of sexual expression within caring. Drawing on four existential principles, I was able to produce rich contextualised descriptions of the participant’s experiences of sexual expression. Findings: Findings show that for persons living with dementia, three topics were unconcealed within the phenomena of sexual expression. They were: (1) embodied sensuous-sexuality; (2) meaningful sexual relationships and (3) sexuality and nursing home culture. For the nurses, findings show that the following topics were significant in nurses experiences of caring for persons living with dementia who express themselves sexually: (1) personal values and beliefs on older persons sexuality; (2) cultural norms around sensuous-sexual expression; (3) the ageing body and (4) lack of awareness and education. Finally, I have developed a ‘Sensuous-Sexual Expression Framework’, which is a new practice framework, and an alternative to BPSD, to view sensuous-sexual in persons living with dementia. Conclusions: This is the first study to explore sexual expression which included persons living with dementia living in nursing homes and to gain valuable insights to their experiences of sexual expression. Practically, this study generates new principles for how nurses can provide better person-centred care for persons living with dementia. Academically, this research adds to existing research that challenges the BPSD model and its underpinning ideas and reframes sexual expression as sensuous-sexual expression. Key words: Sexual expression; Persons living with dementia; Person-centredness; Sensuousness; Existential phenomenology; Participatory principle

    Supporting transformational learning processes for person-centred healthcare research in doctoral education: A critical creative reflection

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    Background: When becoming person-centred researchers, doctoral students are expected to learn to negotiate new identities and reconceptualise themselves both as people and professionals so they can engage in values-driven research. Therefore, doctoral studies require students to engage in transformational learning for the purpose of contributing to knowledge about healthcare practice and healthcare culture. During this time, there is potential for the learning process to be lonely and overly challenging, which can hinder the development of self required for transformational learning. It is proposed that doctoral supervisors and universities should have an understanding of conditions that facilitate transformational learning, such that students can be supported to develop self and become person-centred researchers.Aim: The aim of this article is to share the continuing story of the doctoral journey of two early career researchers and explore the learning processes through which transformation of understanding and of self has occurred.Conclusions and implications for practice: Recognition of the uniqueness of each doctoral learning process is required for the development of self that enables person-centred research and practice. The principles identified in this article can be drawn on to inform ways of working and learning with doctoral supervisors and within the learning environment that allow human flourishing to occur during the doctoral process. These principles include: Facilitation of self-exploration Engagement in multiple ways of learning and diverse learning experiences Facilitative, person-centred supervisory processes Freedom to learn and engage curiosity Experience of challenge in supportive, social learning environments Sense of belonging in the research environment and processhttps://doi.org/10.19043/ipdj.101.01010pubpub

    Developing facilitation skills amongst undergraduate nursing students to promote dementia awareness with children in a higher education institution (innovative practice)

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    Final year students on a BSc Hons Nursing programme in Scotland were supported to become Dementia Friends facilitators and develop interactive dementia awareness sessions for children from local schools. The children were invited to indicate phrases and images they associated with ‘dementia’ at the outset and end of the session. Analysis of the responses suggested that there were positive changes in the children’s values and beliefs when thinking about a person living with dementia during the sessions. We suggest that peer learning is a valuable strategy to increase public and professional awareness about dementia and supports the development of graduate attributes.</p

    Phenotypic Plasticity in Uveal Melanoma Is Not Restricted to a Tumor Subpopulation and Is Unrelated to Cancer Stem Cell Characteristics

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    Purpose: Uveal melanoma (UM) is the most common primary intraocular malignancy in adults and approximately half of those diagnosed will die of metastasis. This study investigates whether UM progression is driven by a subpopulation of stem-like cells, termed “cancer stem cells” (CSCs). Methods: Expression of postulated stem cell markers aldehyde dehydrogenase (ALDH), CD44, and CD133 was analyzed in UM cell lines and primary UM short-term cultures (STCs) established from tumor samples. Additionally, the notion of a “cellular hierarchy” within UM was investigated. Finally, the phenomenon of phenotypic plasticity in response to environmental factors was explored. Results: We demonstrate that expression of ALDH, CD44, and CD133 does not select for a subpopulation of stem-like cells in either UM cell lines or UM STCs. Furthermore, there is an absence of a cellular hierarchy in cell lines and all cells in culture are able to drive tumor progression. Last, we show that established UM cell lines and UM STCs are plastic in nature and switch their phenotype in response to environmental stimuli. Conclusions: We hypothesize that this capacity to undergo phenotypic plasticity may be a consequence of neural crest lineage and renders the exploration of the CSC hypothesis extremely challenging in UM

    Computer literacy, skills and knowledge among dentists and dental care professionals (DCPs) within primary care in Scotland

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    Objective To gain a better understanding of the level of literacy in information technology (IT) across the dental team working within primary care in Scotland, thus allowing appropriate planning of education and training for effective use of IT. Design A postal questionnaire survey of all dentists and dental care professionals (DCPs) within primary care in Scotland; online reply was also an option. Setting General dental practice and the salaried dental service, May 2004. Subjects and methods 2679 dentists and 2861 DCPs were surveyed. Results Forty-three percent of respondents considered their IT skills to be 'moderate', with a further one-third reporting 'nil' or 'low' skill level. Only a quarter of respondents had accessed a learning programme by computer.The majority of IT competence was self-acquired. Conclusions 'Upskilling' the dental team in IT may be required in order to take advantage of e-learning opportunities available now and in the future

    The Student International Community of Practice: A critical reflection on the shared experience of being a member, using creative hermeneutics

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    Background: The Student International Community of Practice is a global network of more than 30 doctoral candidates affiliated with the Centre for Person-centred Practice Research, at Queen Margaret University, Edinburgh. An ongoing challenge the community faces is its changing and growing membership; as members progress and complete their doctoral studies they leave the group, and as the centre grows new community members (doctoral candidates) join.Aim: To explore and describe the experience of being a member of the Student International Community of Practice, using a creative process of reflection and collaborative analysis, and to identify the implications for the future of the community and the integration of new members.Conclusion: The Student International Community of Practice is a valuable social learning experience for those who are members. It will continue to be a flourishing safe space if, despite its changing membership, we pay explicit attention to our agreed purpose, ways of working and values.Implications for practice/academic research: Belonging to a sustainable and flourishing community of practice enhances learning, and decreases isolation and loneliness on the doctoral journey A community of practice is sustainable when it is underpinned by a clear purpose, agreed ways of working and values, to which all members consistently pay explicit attentionhttps://doi.org/10.19043/ipdj.101.01110pubpub

    What Should Be Done To Tackle Ghostwriting in the Medical Literature?

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    Background to the debate: Ghostwriting occurs when someone makes substantial contributions to a manuscript without attribution or disclosure. It is considered bad publication practice in the medical sciences, and some argue it is scientific misconduct. At its extreme, medical ghostwriting involves pharmaceutical companies hiring professional writers to produce papers promoting their products but hiding those contributions and instead naming academic physicians or scientists as the authors. To improve transparency, many editors' associations and journals allow professional medical writers to contribute to the writing of papers without being listed as authors provided their role is acknowledged. This debate examines how best to tackle ghostwriting in the medical literature from the perspectives of a researcher, an editor, and the professional medical writer

    Microstructural white matter changes mediated age- related cognitive decline in the Montreal Cognitive Assessment (MoCA)

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    Although the relationship between aging and cognitive decline is well established, there is substantial individual variability in the degree of cognitive decline in older adults. The present study investigates whether variability in cognitive performance in community-dwelling older adults is related to the presence of whole brain or tract-specific changes in white matter microstructure. Specifically, we examine whether age-related decline in performance on the Montreal Cognitive Assessment (MoCA), a cognitive screening tool, is mediated by the white matter microstructural decline. We also examine if this relationship is driven by the presence of cardiovascular risk factors or variability in cerebral arterial pulsatility, an index of cardiovascular risk. Sixty-nine participants (aged 43–87) completed behavioral and MRI testing including T1 structural, T2-weighted FLAIR, and diffusion-weighted imaging (DWI) sequences. Measures of white matter microstructure were calculated using diffusion tensor imaging analyses on the DWI sequence. Multiple linear regression revealed that MoCA scores were predicted by radial diffusivity (RaD) of white matter beyond age or other cerebral measures. While increasing age and arterial pulsatility were associated with increasing RaD, these factors did not mediate the relationship between total white matter RaD and MoCA. Further, the relationship between MoCA and RaD was specific to participants who reported at least one cardiovascular risk factor. These findings highlight the importance of cardiovascular risk factors in the presentation of cognitive decline in old age. Further work is needed to establish whether medical or lifestyle management of these risk factors can prevent or reverse cognitive decline in old age

    A systematic review of the effectiveness and cost-effectiveness of peer education and peer support in prisons.

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    BACKGROUND: Prisoners experience significantly worse health than the general population. This review examines the effectiveness and cost-effectiveness of peer interventions in prison settings. METHODS: A mixed methods systematic review of effectiveness and cost-effectiveness studies, including qualitative and quantitative synthesis was conducted. In addition to grey literature identified and searches of websites, nineteen electronic databases were searched from 1985 to 2012. Study selection criteria were: Population: Prisoners resident in adult prisons and children resident in Young Offender Institutions (YOIs). INTERVENTION: Peer-based interventions Comparators: Review questions 3 and 4 compared peer and professionally led approaches. OUTCOMES: Prisoner health or determinants of health; organisational/ process outcomes; views of prison populations. STUDY DESIGNS: Quantitative, qualitative and mixed method evaluations. RESULTS: Fifty-seven studies were included in the effectiveness review and one study in the cost-effectiveness review; most were of poor methodological quality. Evidence suggested that peer education interventions are effective at reducing risky behaviours, and that peer support services are acceptable within the prison environment and have a positive effect on recipients, practically or emotionally. Consistent evidence from many, predominantly qualitative, studies, suggested that being a peer deliverer was associated with positive effects. There was little evidence on cost-effectiveness of peer-based interventions. CONCLUSIONS: There is consistent evidence from a large number of studies that being a peer worker is associated with positive health; peer support services are also an acceptable source of help within the prison environment and can have a positive effect on recipients. Research into cost-effectiveness is sparse. SYSTEMATIC REVIEW REGISTRATION: PROSPERO ref: CRD42012002349

    USP27X variants underlying X-linked intellectual disability disrupt protein function via distinct mechanisms

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    Neurodevelopmental disorders with intellectual disability (ND/ID) are a heterogeneous group of diseases driving lifelong deficits in cognition and behavior with no definitive cure. X-linked intellectual disability disorder 105 (XLID105, #300984; OMIM) is a ND/ID driven by hemizygous variants in the USP27X gene encoding a protein deubiquitylase with a role in cell proliferation and neural development. Currently, only four genetically diagnosed individuals from two unrelated families have been described with limited clinical data. Furthermore, the mechanisms underlying the disorder are unknown. Here, we report 10 new XLID105 individuals from nine families and determine the impact of gene variants on USP27X protein function. Using a combination of clinical genetics, bioinformatics, biochemical, and cell biology approaches, we determined that XLID105 variants alter USP27X protein biology via distinct mechanisms including changes in developmentally relevant protein-protein interactions and deubiquitylating activity. Our data better define the phenotypic spectrum of XLID105 and suggest that XLID105 is driven by USP27X functional disruption. Understanding the pathogenic mechanisms of XLID105 variants will provide molecular insight into USP27X biology and may create the potential for therapy development.</p
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