Making sense and finding meaning: comparing narratives of older people with dementia and carers about the quality of an ordinary life

This research examines narratives about the quality of everyday life with dementia. The aim of the study is to compare and contrast differing perspectives about the impact of ageing and dementia upon the lives of older people with dementia. A total of 50 interviews with six older people with dementia and ten family and paid carers were conducted over a two-year period. Narrative analysis was used to examine the content and structure of their accounts to understand their perspectives on what matters most to people living with dementia. This in-depth analysis enabled an exploration of different social concepts and narrative constructions that people draw upon in making sense of their experiences of caring and living with dementia. The analysis demonstrated that older people incorporate ageing and dementia into a continuing sense of self. Positive constructions of living with dementia involve the ability to lead a meaningful life that supports pre-existing social roles and relationships and active engagement within the family and community. The emphasis is on living an ordinary life while responding to the challenges associated with cognitive impairment and social stigma. For family and paid carers, perceptions of a meaningful life depend on how the identity of the older person with dementia is positioned relative to past social roles and relationships. Positive constructions assume continuity as opposed to focusing on disruption in the person’s identity and life. Carer perspectives are also influenced by how the person is perceived to conform to social standards of normality. The narratives of older people with dementia reflect their active struggle to find meaning in terms of realising their sense of self within a social world that largely defines them as different and out of the ordinary. The narratives of carers resonate with emotional difficulty, reflecting their struggle to make sense of a life that is not represented as essentially normal. These findings show that, for all, finding meaning in everyday life depends upon making sense of that life as normal and ordinary

Facilitating creativity in dementia care: the co-construction of arts-based engagement

This paper seeks to understand the engagement of people with dementia in creative and arts-based activities by applying a relational model of citizenship and incorporating concepts of contextual and embodied learning from adult learning theory. A theoretically-driven secondary analysis of observational and interview data focuses on the engagement of staff, volunteers and people with dementia during an arts-based intervention in a day centre and care home. The processes through which learning is co-constructed between the person with dementia, staff/volunteer facilitators and peers in the group to co-produce a creative engaged experience involves: increasing confidence for learning, facilitating social and physical connections, and affirming creative self-expression. The role of facilitator is central to the process of creative engagement to reinforce a sense of agency amongst participants and recognise people’s prior experiences of learning and engagement in creative activities. People with dementia continue to learn and grow through engagement in creative activities to produce positive outcomes for the individual participants and for the care staff who observe and participate in this creativity. Facilitating creativity requires attention to lifelong experiences of learning in addition to the immediate interactional context to successfully integrate arts-based interventions in dementia care

Exploring the feasibility and acceptability of couple-based psychosexual support following prostate cancer surgery: Study protocol for a pilot randomised controlled trial

Background: Men who undergo surgery for prostate cancer frequently experience significant side-effects including urinary and sexual dysfunction. These difficulties can lead to anxiety, depression and reduced quality of life. Many partners also experience psychological distress. An additional impact can be on the couple relationship, with changes to intimacy, and unmet psychosexual supportive needs in relation to sexual recovery and rehabilitation. The aim of this exploratory randomised controlled trial pilot study is to determine the feasibility and acceptability of a novel family-relational-psychosexual intervention to support intimacy and reduce distress among couples following prostate cancer surgery and to estimate the efficacy of this intervention. Methods/Design: The intervention will comprise six sessions of psychosexual and relationship support delivered by experienced couple-support practitioners. Specialist training in delivering the intervention will be provided to practitioners and they will be guided by a detailed treatment manual based on systemic principles. Sixty-eight couples will be randomised to receive either the intervention or standard care (comprising usual follow-up hospital appointments). A pre-test, post-test design will be used to test the feasibility of the intervention (baseline, end of intervention and six-month follow-up) and its acceptability to couples and healthcare professionals (qualitative interviews). Both individual and relational outcome measures will assess sexual functioning, anxiety and depression, couple relationship, use of health services and erectile dysfunction medication/technologies. An economic analysis will estimate population costs of the intervention, compared to usual care, using simple modelling to evaluate the affordability of the intervention. Discussion: Given the increasing incidence and survival of post-operative men with prostate cancer, it is timely and appropriate to determine the feasibility of a definitive trial through a pilot randomised controlled trial of a family-relational-psychosexual intervention for couples. The study will provide evidence about the components of a couple-based intervention, its acceptability to patients and healthcare professionals, and its influence on sexual and relational functioning. Data from this study will be used to calculate sample sizes required for any definitive trial. Trial registration: ClinicalTrials.gov Identifier: NCT01842438. Registration date: 24 April 2013; Randomisation of first patient: 13 May 201

Making sense and finding meaning : comparing narratives of older people with dementia and carers about the quality of an ordinary life

This research examines narratives about the quality of everyday life with dementia. The aim of the study is to compare and contrast differing perspectives about the impact of ageing and dementia upon the lives of older people with dementia. A total of 50 interviews with six older people with dementia and ten family and paid carers were conducted over a two-year period. Narrative analysis was used to examine the content and structure of their accounts to understand their perspectives on what matters most to people living with dementia. This in-depth analysis enabled an exploration of different social concepts and narrative constructions that people draw upon in making sense of their experiences of caring and living with dementia. The analysis demonstrated that older people incorporate ageing and dementia into a continuing sense of self. Positive constructions of living with dementia involve the ability to lead a meaningful life that supports pre-existing social roles and relationships and active engagement within the family and community. The emphasis is on living an ordinary life while responding to the challenges associated with cognitive impairment and social stigma. For family and paid carers, perceptions of a meaningful life depend on how the identity of the older person with dementia is positioned relative to past social roles and relationships. Positive constructions assume continuity as opposed to focusing on disruption in the person’s identity and life. Carer perspectives are also influenced by how the person is perceived to conform to social standards of normality. The narratives of older people with dementia reflect their active struggle to find meaning in terms of realising their sense of self within a social world that largely defines them as different and out of the ordinary. The narratives of carers resonate with emotional difficulty, reflecting their struggle to make sense of a life that is not represented as essentially normal. These findings show that, for all, finding meaning in everyday life depends upon making sense of that life as normal and ordinary.EThOS - Electronic Theses Online ServiceEconomic and Social Research Council : Department of Applied Social Science, University of StirlingGBUnited Kingdo

Day care for people with dementia: A qualitative study comparing experiences from Norway and Scotland

Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway’s national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers

Differing instructional needs for children of similar reading achievement grades two, four, and six

Thesis (Ed.M.)--Boston Universit

Eliciting the dynamics of leading a sustainable event: Key informant responses

Within the event management literature relating to network development and festival sustainability there is a paucity of research that analyzes the perception of festival sustainability by festival leaders. After an initial review of the context of sustainability, network theory, and an identification of the changing set of competencies for effective leadership, an exploratory and explanatory investigation is made to elicit and identify the critical factors that key informant festival leaders associate with sustainable festivals. The main purpose of this study is to attain a greater depth of understanding of festival leaders' attitudes towards the dynamics of creating and directing sustainable festivals. Indepth interviews with five elite festival leaders helped to generate the elements of a repertory grid from which a "triading" method was used to elicit constructs. Of the constructs identified, the most significant relate to four areas: the event subject focus; the leadership; the funding; and the organizational culture. The research also revealed that festival leaders conceive sustainability not as an environmental concern, but as a matter of festival survival. Suggestions are then drawn as to the future role of the repertory grid method in identifying and managing stakeholder visions, and future lines of research investigation and application. © 2011 Cognizant Comm. Corp

Quantifying full phenological event distributions reveals simultaneous advances, temporal stability and delays in spring and autumn migration timing in long-distance migratory birds

Acknowledgements We thank all Fair Isle Bird Observatory staff and volunteers for help with data collection and acknowledge the foresight of George Waterston and Ken Williamson in instigating the observatory and census methodology. We thank all current and previous directors of Fair Isle Bird Observatory Trust for their contributions, particularly Dave Okill and Mike Wood for their stalwart support for the long-term data collection and for the current analyses. Dawn Balmer and Ian Newton provided helpful guidance on manuscript drafts. We thank Ally Phillimore and two anonymous referees for helpful comments. This study would have been impossible without the Fair Isle community's invaluable support and patience over many decades, which is very gratefully acknowledged. WTSM and JMR designed and undertook analyses, wrote the paper and contributed to data collection and compilation, MB contributed to analysis and editing, all other authors oversaw and undertook data collection and compilation and contributed to editing.Peer reviewedPostprin

The treatment of booking gestational diabetes mellitus (TOBOGM) pilot randomised controlled trial

Background: We piloted a randomised controlled trial (RCT) comparing pregnancy outcomes among women with booking gestational diabetes (GDM) receiving immediate or deferred treatment. Methods: Consecutive, consenting women < 20 weeks gestation, with GDM risk factors attending the hospital book-in clinic, completed an oral glucose tolerance test (OGTT). Clinicians were blinded to OGTT results. Women fulfilling World Health Organisation GDM criteria were randomised to either clinic referral /ongoing treatment (Treated Group n = 11), or no treatment (No Treatment Group n = 10). Women without ‘Booking GDM’ (‘Decoys’ n = 58) and those in the No Treatment Group had a repeat OGTT at 24–28 weeks (with GDM treated if diagnosed). Midwives and mothers were asked to complete surveys and attend focus groups before and after the study respectively regarding their experiences and expectations of the study protocol. Results: Sufficient women completed each step of the RCT. Gestation at OGTT was late at 18 ± 2 weeks with Treated and No Treatment groups largely similar. At 24–28 weeks gestation, GDM was present in 8/9 (89%) in the No Treatment group and 11/56 (20%) Decoys. NICU admission was highest in the Treated group (36% vs 0% p = 0.043), largely due to small for gestational age, and Large for Gestational Age babies greatest in the No Treatment group (0% vs 33% p = 0.030). Conclusion: An RCT deferring ‘Booking GDM’ treatment is feasible. Most women with untreated ‘Booking GDM’ in mid 2nd trimester had GDM at 24–28 weeks. Early treatment may have both benefits and harms. A full RCT is needed