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Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. Methods: Forty‐six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home. Key points: Neighbourhoods begin within homes and are interconnected. This relationship has important implications for the discourse of ageing in place.'Home' for people living with dementia holds the same meanings for those without dementia, but with some notable differences. It is important to recognise the shifting dynamics of home and to recognise the complexity of home in the context of dementia. There is not a fixed solution to the challenges of ageing at home with dementia, but support and understanding need to evolve alongside people with lived experience.Homes are a site of renegotiation where new meanings are created to reflect the changing nature of home and the lived experience of home for those with dementia.The study has provided findings through innovation in the research design. The employment of creative methods enabled people living with dementia to participate in sharing their own narratives of home.The work provides evidence where there is a current gap in understanding 'what matters' about home for people living with dementia. [ABSTRACT FROM AUTHOR]

Purpose The perspectives of people with dementia and their care partners regarding “extra care” housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners.Design/methodology/approach Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically.Findings Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care.Research limitations/implications The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner.Practical implications The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia.Social implications The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be “home”, for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia.Originality/value This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia. [ABSTRACT FROM AUTHOR]

This paper reports on an action-oriented research study providing decision support to three local authorities in England on the prioritisation of public health investment and disinvestment decisions. We adopted a political science perspective, using the multiple streams framework to investigate the use of prioritisation tools in public health spending decisions at a time of severe financial constraints. The challenges and implications of their potential use in everyday practice were explored. Twenty-nine interviews were conducted before the targeted decision support occurred and 19 interviews after the decision support had been delivered. Interviews were held with locally elected politicians, officers and public health professionals based within local government, NHS commissioners and the local independent consumer watchdog for health and social care. Targeted workshops with local stakeholders were facilitated in each site by health economist members of the project team. Structured observational notes were recorded during these workshops and integrated with the interview data. Many respondents expressed an interest in prioritisation tools although some scepticism was expressed about their value and impact on decision-making. This paper analyses the enablers and barriers to adopting priority-setting tools in a local government environment that by definition is political. The findings suggest that the adoption of priority-setting tools in decision-making processes in public health poses some significant challenges within local government and that certain enabling factors have to be present. [ABSTRACT FROM PUBLISHER]

Background: Patient and public involvement (PPI) is a requirement for UK health and social care research funding. Evidence for how best to implement PPI in research programmes, such as National Institute for Health Research (NIHR) Collaborations for Applied Health Research and Care (CLAHRCs), remains limited. This paper reports findings from an action research (AR) project called IMPRESS, which aims to strengthen PPI within CLAHRC East of England (EoE). IMPRESS combines AR with Normalisation Process Theory (NPT) to explore PPI within diverse case study projects, identifying actions to implement, test and refine to further embed PPI. Methods: We purposively selected CLAHRC EoE case study projects for in-depth analysis of PPI using NPT. Data were generated from project PPI documentation, semi-structured qualitative interviews with researchers and PPI contributors and focus groups. Transcripts and documents were subjected to abductive thematic analysis and triangulation within case. Systematic across case comparison of themes was undertaken with findings and implications refined through stakeholder consultation. Results: We interviewed 24 researchers and 13 PPI contributors and analysed 28 documents from 10 case studies. Three focus groups were held: two with researchers (n = 4 and n = 6) and one with PPI contributors (n = 5). Findings detail to what extent projects made sense of PPI, bought in to PPI, operationalised PPI and appraised it, thus identifying barriers and enablers to fully embedded PPI. Conclusion: Combining NPT with AR allows us to assess the embeddedness of PPI within projects and programme, to inform specific local action and report broader conceptual lessons for PPI knowledge and practice informing the development of an action framework for embedding PPI in research programmes. To embed PPI within similar programmes teams, professionals, disciplines and institutions should be recognised as variably networked into existing PPI support. Further focus and research is needed on sharing PPI learning and supporting innovation in PPI. [ABSTRACT FROM AUTHOR]

Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. Setting: Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69-89 years (mean 79 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. Findings: For community-dwelling older adults, family carers are conceptualised as 'conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of 'second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults. [ABSTRACT FROM AUTHOR]

Aim: To investigate how vision relates to early development by studying vision and cognition in a national cohort of 1-year-old infants with congenital disorders of the peripheral visual system and visual impairment.Method: This was a cross-sectional observational investigation of a nationally recruited cohort of infants with 'simple' and 'complex' congenital disorders of the peripheral visual system. Entry age was 8 to 16 months. Vision level (Near Detection Scale) and non-verbal cognition (sensorimotor understanding, Reynell Zinkin Scales) were assessed. Parents completed demographic questionnaires.Results: Of 90 infants (49 males, 41 females; mean 13mo, standard deviation [SD] 2.5mo; range 7-17mo); 25 (28%) had profound visual impairment (light perception at best) and 65 (72%) had severe visual impairment (basic 'form' vision). The Near Detection Scale correlated significantly with sensorimotor understanding developmental quotients in the 'total', 'simple', and 'complex' groups (all p<0.001). Age and vision accounted for 48% of sensorimotor understanding variance. Infants with profound visual impairment, especially in the 'complex' group with congenital disorders of the peripheral visual system with known brain involvement, showed the greatest cognitive delay.Interpretation: Lack of vision is associated with delayed early-object manipulative abilities and concepts; 'form' vision appeared to support early developmental advance. This paper provides baseline characteristics for cross-sectional and longitudinal follow-up investigations in progress. A methodological strength of the study was the representativeness of the cohort according to national epidemiological and population census data. [ABSTRACT FROM AUTHOR]

Gypsies, Roma and Travellers (GRT) experience a significantly high number of measles cases and have low levels of measles, mumps and rubella (MMR) immunisation. There is little evidence on: why immunisation levels are low; beliefs and practices surrounding the MMR vaccine; or the factors that promote or hinder uptake. This paper presents data from five focus groups with 16 GRT mothers in Kent, South East England. Between them, they had 35 children of whom just under half had not received the course of vaccinations. Focus groups explored the issues GRT parents consider when making vaccination decisions in the context of wider social, ideological, material and practical considerations. Four interrelated themes were identified: way of life and access; engaging with health care staff; perceptions and evaluations of risk; and strategies to minimise MMR-related risks. Our findings provide little support for explanations that emphasise cultural values or practices in shaping immunisation behaviour. Poor service provision, situational constraints related to living circumstances, and multifaceted and severe health issues, which precede and inform decisions over childhood immunisation, were more significant in explaining low uptake. [ABSTRACT FROM PUBLISHER]

cook c. (2012) Email interviewing: generating data with a vulnerable population. Journal of Advanced Nursing 68(6), 1330-1339. Abstract Aims. This paper describes online recruitment and the email interviewing data collection method with women diagnosed with a viral sexually transmitted infection. The paper highlights the advantages of the method to researchers and participants when conducting research where face-to-face participation may difficult. Background. Online recruitment and in-depth email interviewing have been used by only a small number of nurses internationally. The method enables inclusion of people who might otherwise be excluded from research, for reasons such as geographical distance, incompatible time frames, clinicians''gate-keeping' and participants' desire for anonymity for physical or emotional reasons. Methods. In-depth email interviews were conducted with 26 women in New Zealand, United States of America, Canada and England who had a diagnosis of either human papilloma virus or genital herpes simplex virus. Data were collected during 2007-2008 and analysed using a poststructuralist, feminist thematic analysis. Results. Participant retention was high. Women emphasized satisfaction with the process. Asynchronous interviews allowed for additional reflexivity in the researcher's responses and rich data generation. Conclusion. This method has the potential to enable nurses to include vulnerable and relatively inaccessible participants in 'sensitive' research. In-depth email interviews may generate rich data through a process participants deem to be of personal value. [ABSTRACT FROM AUTHOR]

Disabled men have traditionally been seen as incomplete men or as entirely gender-less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogeneous group with little reference to, for example, impairment-related differences. The ongoing move towards self-directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy in England in 2013 explored the men's experiences of the organisation and delivery of social care as it pertained to their sense of being men. Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de-gendered or emasculated many of the men who took part in the study. Our paper speaks to the need to explore impairment-specific issues for disabled men; to deliver a more person-centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty. [ABSTRACT FROM AUTHOR]

This paper focuses on the diversity in patients' experience of biomedicine and contrasts it with the normative view characteristic of health professionals. Ethnographic fieldwork among Polish migrant women in London, Barcelona and Berlin included interviews about their experiences with local healthcare and health professionals. Themes drawn from the narratives are differences between the cities in terms of communication between patients and health professionals, respect for patients' choices and dignity, attitudes to pregnancy and birth (different levels of medicalization), and paediatric care. It is argued that patients continuously negotiate among their own views and expectations based on previous experiences and knowledge from personal communication; internet forums and publications; and the offer of medical services in the countries of their settlement. Patients experience pluralism of therapeutic traditions within and outside bio-medicine. In turn, representatives of bio-medicine are rarely aware of other medical practices and beliefs and this leads to various misunderstandings. By highlighting the pluralism of medical practices in European countries and the increasing mobility of patients, this case study has useful implications for medical anthropologists and health professionals in a broader Western context, such as raising sensitivity to different communication strategies and a diversity of curing traditions and expectations. [ABSTRACT FROM AUTHOR]

Background: Increasingly, it is being suggested that translational gaps might be eradicated or narrowed by bringing research users and producers closer together, a theory that is largely untested. This paper reports a national study to fill a gap in the evidence about the conditions, processes and outcomes related to collaboration and implementation.Methods: A longitudinal realist evaluation using multiple qualitative methods case studies was conducted with three Collaborations for Leadership in Applied Health Research in Care (England). Data were collected over four rounds of theory development, refinement and testing. Over 200 participants were involved in semi-structured interviews, non-participant observations of events and meetings, and stakeholder engagement. A combined inductive and deductive data analysis process was focused on proposition refinement and testing iteratively over data collection rounds.Results: The quality of existing relationships between higher education and local health service, and views about whether implementation was a collaborative act, created a path dependency. Where implementation was perceived to be removed from service and there was a lack of organisational connections, this resulted in a focus on knowledge production and transfer, rather than co-production. The collaborations' architectures were counterproductive because they did not facilitate connectivity and had emphasised professional and epistemic boundaries. More distributed leadership was associated with greater potential for engagement. The creation of boundary spanning roles was the most visible investment in implementation, and credible individuals in these roles resulted in cross-boundary work, in facilitation and in direct impacts. The academic-practice divide played out strongly as a context for motivation to engage, in that 'what's in it for me' resulted in variable levels of engagement along a co-operation-collaboration continuum. Learning within and across collaborations was patchy depending on attention to evaluation.Conclusions: These collaborations did not emerge from a vacuum, and they needed time to learn and develop. Their life cycle started with their position on collaboration, knowledge and implementation. More impactful attempts at collective action in implementation might be determined by the deliberate alignment of a number of features, including foundational relationships, vision, values, structures and processes and views about the nature of the collaboration and implementation. [ABSTRACT FROM AUTHOR]

Background.Depression and anxiety persist within and across diagnostic boundaries. The manner in which common v. disorder-specific genetic and environmental influences operate across development to maintain internalizing disorders and their co-morbidity is unclear. This paper investigates the stability and change of etiological influences on depression, panic, generalized, separation and social anxiety symptoms, and their co-occurrence, across adolescence and young adulthood.Method.A total of 2619 twins/siblings prospectively reported symptoms of depression and anxiety at mean ages 15, 17 and 20 years.Results.Each symptom scale showed a similar pattern of moderate continuity across development, largely underpinned by genetic stability. New genetic influences contributing to change in the developmental course of the symptoms emerged at each time point. All symptom scales correlated moderately with one another over time. Genetic influences, both stable and time-specific, overlapped considerably between the scales. Non-shared environmental influences were largely time- and symptom-specific, but some contributed moderately to the stability of depression and anxiety symptom scales. These stable, longitudinal environmental influences were highly correlated between the symptoms.Conclusions.The results highlight both stable and dynamic etiology of depression and anxiety symptom scales. They provide preliminary evidence that stable as well as newly emerging genes contribute to the co-morbidity between depression and anxiety across adolescence and young adulthood. Conversely, environmental influences are largely time-specific and contribute to change in symptoms over time. The results inform molecular genetics research and transdiagnostic treatment and prevention approaches. [ABSTRACT FROM PUBLISHER]

Despite media and political rhetoric to the contrary, there is persuasive evidence to suggest an association between deprivation and those involved in the English riots of 2011, which continues to be downplayed when developing responses to crime and crime prevention policy. This study explores empirical evidence from two major cities in the North West of England, which highlights an association between deprivation and rioting in both criminal charge and sentencing data allowing further exploration of some of these issues. The paper argues that to mask the rioting as ‘mindless criminality’ is to ignore wider social-structural inequalities and to silence important messages contained in the rioting behaviour from disenfranchised youth and communities about the inequalities they suffer. [ABSTRACT FROM PUBLISHER]

Since 1977 homelessness legislation in England has offered limited statutory accommodation rights to unintentionally homeless people who are judged to be in priority need and able to demonstrate a local connection. Using data generated in interviews with homeless people and staff working to support them, this paper considers the impact of current homelessness policy and practice and explores how decisions about intentionality, priority need and local connection serve to exacerbate the social exclusion experienced by single homeless people with multiple support needs. It is concluded that a more genuinely inclusive welfare state will only emerge when, and if, policymakers and wider society are able to abandon their current fixation with using welfare policy to punish ‘irresponsible’ behaviour and refocus instead on providing services to adequately meet the basic needs of marginalised people. [ABSTRACT FROM PUBLISHER]

The context of this article is the use of employer sanctions, in the form of raids and fines on businesses found to be employing people who do not have permission to work in the UK, as a method of in-border immigration control. Drawing on qualitative interviews with undocumented migrants and ethnic enclave employers in London, this article examines the impact of sanctions from the perspectives of those who have been or are most likely to be affected. More specifically the article sheds light on individual experiences of and strategies against immigration enforcement raids, and the effect of raids on the labour market, conditions of work and more widely, on local community relations. The paper concludes that there is a disjuncture between the real impact of sanctions and at least some of the stated policy aims. [ABSTRACT FROM PUBLISHER]

Background A 'blended' (e-learning and facilitated workshops) training course for Group C staff (i.e. staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes. This paper evaluates the impact of the course on participants' understandings of and confidence in delivering end of life care in one nursing home, while also considering barriers to change in practice. Methods A mixed-methods case study approach, incorporating pre- and post-course questionnaires (SHA East of England End of Life Care Education Programme 'ABC' Project Work Force C or Non Nurse Workforce B Pre and Post Course Questionnaire; E-Learning in End of Life Care Study Pre and Post Course Questionnaire), documentary analysis, semi-structured interviews, and observation of course workshops. Participants were 20 members of staff at a nursing home in a city in the East of England, including 14 Health Care Assistants (carers) and 6 others (administrative, activities, hosting, and catering staff). The questionnaires and interviews assessed understandings of and confidence towards end of life care delivery. Results Improvements in participants' confidence in delivering end of life care were observed, particularly in the core competency areas of symptom management, communication, and advance care planning. A shift towards more detailed and more holistic understandings of end of life care was in evidence; some participants also championed end of life care in the home as a result of the course. Several barriers to changes in practice were encountered, including uneven participation, the absence of mechanisms for disseminating new insights and knowledge within the home, and a widespread perception that nurses' professional dominance in the home made sustainable change difficult to enact. Conclusions While blended e-learning courses have the potential to generate positive change in participants' understandings of and confidence about End of Life Care, organizational and inter-professional obstacles must be overcome in order to translate these changes into improved end of life care delivery in nursing (and residential) homes. [ABSTRACT FROM AUTHOR]

Background: We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods: Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results: Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions: With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. [ABSTRACT FROM AUTHOR]

kennedy f., harcourt d. & rumsey n. (2011) The shifting nature of women's experiences and perceptions of ductal carcinoma in situ. Journal of Advanced Nursing 68(4), 856-867. Abstract Aim. This paper is a report of a descriptive qualitative study of the evolution of women's perceptions and experiences of ductal carcinoma in situ from the period near to diagnosis to 1 year later. Background. Ductal carcinoma in situ is a non-invasive breast condition where cancer cells are detected but confined to the ducts of the breast. With treatment, the condition has a positive prognosis but ironically patients undergo treatment similar to that for invasive breast cancer. There is a lack of longitudinal qualitative research studying women's experiences of ductal carcinoma in situ, especially among newly diagnosed patients, and how experiences change over time. Methods. Forty-five women took part in an initial interview following a diagnosis of ductal carcinoma in situ and 27 took part in a follow-up interview 9-13 months later. Data were collected between January 2007 and October 2008. Transcripts were analysed using a hybrid approach to thematic analysis. Findings. Women's early perceptions of ductal carcinoma in situ merged and sometimes conflicted with their lay beliefs of breast cancer. Perceptions and experiences of the condition shifted over time. These overriding aspects were evident in four themes identified across the interviews: (i) perceptions of ductal carcinoma in situ vs. breast cancer, (ii) from paradox to acceptance, (iii) personal impact, and (iv) support and interactions with others. Conclusion. This study represents one of the few longitudinal qualitative studies with newly diagnosed patients, capturing women's initial and shifting experiences and perceptions of the condition. The issues identified need to be recognized in clinical practice and supported appropriately. [ABSTRACT FROM AUTHOR]