A grounded theory analysis of the occupational impact of caring for a partner who has multiple sclerosis

Chronic progressive conditions such as multiple sclerosis impact engagement in and orchestration of daily occupations by people with the condition, and their family members. This qualitative study addressed the way in which multiple sclerosis can affect family life, particularly exploring how it affects the occupations of the partner of a person with the condition. The study involved in-depth interviewing and grounded theory analysis to explore the occupational nature of being a partner of someone who has multiple sclerosis. Findings reveal how partners’ occupations are affected over time, with occupational opportunities inspired by multiple sclerosis and occupational constraints provoked by the disorder, including nostalgia for an multiple sclerosis free existence, the transition to being a carer and an occupationally uncertain future

In their words: how television and visual media can raise awareness of dementia and other health conditions that carry stigma, including disabilities.

This article explores the mutual contribution of television and disability studies, focusing on the role of television and visual media in raising awareness and challenging gaps in understanding of dementia, a health condition that carries stigma and is framed as a disability. The Living Well with Dementia, Dorset: Video project, demonstrates the duality of how creating and disseminating a video featuring people with dementia and carers talking about what it means to live well with the condition, provides a way to use media to raise awareness of dementia. Portraying real-life experiences of people affected by dementia was crucial, and enabled these often marginalized voices to be heard. Participants discussed experiences of diagnosis, post-diagnostic support, adjustments to lifestyle, social activities and family relationships. The video was disseminated through YouTube, and the impact on understandings of dementia was established through a questionnaire. Findings indicate personal stories are a powerful way to raise awareness of dementia, an approach that could improve awareness of other health conditions that carry stigma, including disabilities. Video provides researchers with novel ways to disseminate findings that extend to new and wide- ranging audiences. The fields of television and disability studies can therefore make a valuable mutual contribution

Momentum-space engineering of gaseous Bose-Einstein condensates

We show how the momentum distribution of gaseous Bose--Einstein condensates can be shaped by applying a sequence of standing-wave laser pulses. We present a theory, whose validity for was demonstrated in an earlier experiment [L.\ Deng, et al., \prl {\bf 83}, 5407 (1999)], of the effect of a two-pulse sequence on the condensate wavefunction in momentum space. We generalize the previous result to the case of $N$ pulses of arbitrary intensity separated by arbitrary intervals and show how these parameters can be engineered to produce a desired final momentum distribution. We find that several momentum distributions, important in atom-interferometry applications, can be engineered with high fidelity with two or three pulses.Comment: 13 pages, 4 figure

Social care and support needs of community-dwelling people with dementia and concurrent visual impairment

Objectives: Little is known about the needs of people who have both dementia and visual impairment. This study explored the social care and support needs of people with dementia and concurrent visual impairment, and the barriers and facilitators for meeting these needs. Method: Twenty-six semi-structured interviews were conducted: 21 joint interviews with the person with dementia and visual impairment and their family member / paid carer; and 5 individual interviews with either the person with dementia and visual impairment (n=4) or their family member (n=1). Interviews were audio recorded, transcribed verbatim, and analysed thematically. Results: Three themes are presented. (1) Social care needs: having dementia can reduce an individual’s ability to cope with their visual impairment, and in turn make the person more dependent and prone to lack of daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported in learning to use unfamiliar technology, and for some, the presence of dementia made visual impairment aids unusable and vice versa. Visual impairment aids were also perceived as expensive. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home environment facilitated retention of independence, and continuity of paid carers / volunteers facilitated the caring relationship between the individual and staff / volunteer. Conclusion: Dementia and visual impairment often coexist and care workers will better serve older people if they are aware of the social care and support needs that arise from having both conditions

Effect of dual pulmonary vasodilator therapy in pulmonary arterial hypertension associated with congenital heart disease: a retrospective analysis

Background: Patients with pulmonary arterial hypertension (PAH) are managed according to evidence-based treatment guidelines. Methods and results: In this single-centre retrospective analysis, we examined outcomes of patients with PAH caused by congenital heart disease (PAH-CHD) with respect to exercise capacity and survival of adults treated with either bosentan or sildenafil monotherapy or bosentan-sildenafil dual therapy between January 2007 and January 2014. Of the 82 patients analysed, 29 had Down syndrome; 54 (65.8%) received bosentan monotherapy, 16 (19.5%) sildenafil monotherapy and 12 (14.6%) dual therapy. Mean treatment duration was 2.5 years for all patients and 4.1 years for 38 patients treated for ≥2 years. Pooled patient and treatment data showed initial improvement followed by stabilisation in mean 6 min walk distance (6MWD). For Down and non-Down patients, mean 6MWD increased and then stabilised on bosentan monotherapy. Mean 6MWD of patients on dual therapy at the time of analysis was 246.3 m before PAH-specific therapy initiation, 211.9 m immediately prior to addition of a second therapy and 214.4 m at last visit while on dual therapy. 1, 2 and 3- year survival rates for all patients from time of treatment initiation were 96%, 87% and 80%, respectively. Conclusions: For the majority of patients, monotherapy with a PAH-specific medication provided improved and sustained exercise benefits. For the small percentage of patients who required it, add-on therapy appeared to prevent further deterioration in exercise capacity but did not improve 6MWD

A protocol for co-creating research project lay summaries with stakeholders:Guideline development for Canada's AGE-WELL Network

Background: Funding bodies increasingly require researchers to write lay summaries to communicate projects’ real-world relevance to the public in an accessible way. However, research proposals and findings are generally not easily readable or understandable by non-specialist readers. Many researchers find writing lay summaries difficult because they typically write for fellow subject specialists or academics rather than the general public or a non-specialist audience. The primary objective of our project is to develop guidelines for researchers in Canada’s AGE-WELL Network of Centres of Excellence, and ultimately various other disciplines, sectors, and institutions, to co-create lay summaries of research projects with stakeholders. To begin, we produced a protocol for co-creating a lay summary based on workshops we organized and facilitated for an AGE-WELL researcher. This paper presents the lay summary co-creation protocol that AGE-WELL researchers will be invited to use.Methods: Eligible participants in this project will be 24 AgeTech project researchers who are funded by the AGE-WELL network in its Core Research Program 2020. If they agree to participate in this project, we will invite them to use our protocol to co-produce a lay summary of their respective projects with stakeholders. The protocol comprises six steps: Investigate principles of writing a good lay summary, identify the target readership, identify stakeholders to collaborate with, recruit the identified stakeholders to work on a lay summary, prepare for workshop sessions, and execute the sessions. To help participants through the process, we will provide them with a guide to developing an accessible, readable research lay summary, help them make decisions, and host, and facilitate if needed, their lay summary co-creation workshops.Discussion: Public-facing research outputs, including lay summaries, are increasingly important knowledge translation strategies to promote the impact of research on real-world issues. To produce lay summaries that include information that will interest a non-specialist readership and that are written in accessible language, stakeholder engagement is key. Furthermore, both researchers and stakeholders benefit by participating in the co-creation process. We hope the protocol helps researchers collaborate with stakeholders effectively to co-produce lay summaries that meet the needs of both the public and project funders

Alien Registration- Heward, Angeline (Westbrook, Cumberland County)

https://digitalmaine.com/alien_docs/20107/thumbnail.jp