Anxiety related to discharge from inpatient neurorehabilitation: exploring the role of self-efficacy and internal health control beliefs

The study aimed to determine the prevalence of anxiety related to discharge, among a group of 42 participants who were likely to have sustaineaan at least moderate to severe ABI and who were due to be discharged home following a period of inpatient neurorehabilitation. Differential relationships between psychological factors (self-efficacy and internal health control beliefs) were examined, alongside the relative influence of demographic and clinical characteristics on discharge anxiety. Data were obtained via self-report measures and retrospective reviews of participant’s inpatient medical records. While relatively few participants (n ¼ 6; 14%) reported markedly elevated trait anxiety, almost half the sample (n ¼ 19; 45%) reported clinically significant levels of transient state-anxiety. Notably, state-anxiety was strongly associated with discharge anxiety. Multivariate analyses revealed that age, self-efficacy and internal health control beliefs made independent contributions to self reported discharge anxiety, with perceived self-efficacy alone explaining 69% of the variance and mediating the effects of age and internal health control beliefs. None of the other demographic or clinical characteristics examined was significantly associated with discharge anxiety. While causality cannot be inferred, findings suggest that anxiety related to discharge from rehabilitation might be best predicted by poor perceptions of self-efficacy. Implications for clinical practice and future research are discussed

What factors influence healthcare professionals to refer children and families to paediatric psychology?

Objectives: This study aimed to investigate factors influencing referral of children with physical illness to paediatric psychology. Due to high rates of mental health problems within this population, studies have shown that referral to paediatric psychology should be increased. However, few studies have examined factors shaping healthcare professionals’ referral behaviour. Methods: The current study used the theory of planned behaviour to develop a questionnaire which explores factors influencing the referral of children and families to paediatric psychology. Psychometric properties of the questionnaire were examined. Results: The questionnaire was found to have good reliability and validity. The main constructs of the theory of planned behaviour were useful in predicting intention to refer to paediatric psychology. Specific beliefs about referral were shown to influence intention to refer. Conclusions: Findings suggest that individual attitudes and beliefs can impact healthcare professionals’ referral behaviour, indicating that multidisciplinary interventions and inter-professional education relating to the psychological aspects of illness are required

Video conferencing peer support and rarer forms of dementia: An exploration of family carers’ positive experiences

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD’s positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others’ responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD’s positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers’ positive caring experiences and resources within healthcare and supportive settings

Talking lines: A research protocol integrating verbal and visual narratives to understand the experiences of people affected by rarer forms of dementia

People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies

Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their carers

Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities

Developing poetry as a research methodology with rarer forms of dementia: Four research protocols

People living with rarer forms of dementia tend to have progressive cognitive symptoms affecting skills other than memory and/ or onset before the age of 65 years. They are often misdiagnosed and due to symptom profile or age of onset, do not usually fit well with care pathways designed for older people with typical Alzheimer’s disease or vascular dementia. Although the arts have been increasingly used as interventions to support people with dementia, there is very little attention given to rarer dementia forms in arts and health research or practice. The objective of the present international study seeks to systematically explore four diverse forms of poetry writing within this population through virtual and in-person small and large group formats. Our approach includes investigating poetic processes as methodology through the lens of an arts-based methodological approach in order to explore how poems construct knowledge and a felt experience. We will also use more traditional qualitative approaches to understand the experience of writing, reading and listening to poetry as an intervention that can be used with different rarer forms of dementia. To the best of our knowledge, this will be the first study to explore poetry using multiple research protocols. The results will have implications for methodology development, co-constructed poetic inquiry and multiple opportunities for involving poetry in supporting people with dementia and family members

Better living with non-memory led dementia: Protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

Background Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme. Methods A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. Discussion Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia. Trial registration This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377

Communities and patterns of scientific collaboration in Business and Management

This is the author's accepted version of this article deposited at arXiv (arXiv:1006.1788v2 [physics.soc-ph]) and subsequently published in Scientometrics October 2011, Volume 89, Issue 1, pp 381-396. The final publication is available at link.springer.com http://link.springer.com/article/10.1007%2Fs11192-011-0439-1Author's note: 17 pages. To appear in special edition of Scientometrics. Abstract on arXiv meta-data a shorter version of abstract on actual paper (both in journal and arXiv full pape

Community structure and patterns of scientific collaboration in Business and Management

This is the author's accepted version of this article deposited at arXiv (arXiv:1006.1788v2 [physics.soc-ph]) and subsequently published in Scientometrics October 2011, Volume 89, Issue 1, pp 381-396. The final publication is available at link.springer.com http://link.springer.com/article/10.1007%2Fs11192-011-0439-1Author's note: 17 pages. To appear in special edition of Scientometrics. Abstract on arXiv meta-data a shorter version of abstract on actual paper (both in journal and arXiv full pape

Museum activities in dementia care: using visual analog scales to measure subjective wellbeing

Introduction: Previous research has shown that people with dementia and caregivers derive wellbeing-related benefits from viewing art in a group, and that facilitated museum object handling is effective in increasing subjective wellbeing for people with a range of health conditions. The present study quantitatively compared the impact of two museum-based activities and a social activity on the subjective wellbeing of people with dementia and their caregivers. Methods: A quasi-experimental crossover design was used. People with early to middle stage dementia and caregivers (N = 66) participated in museum object handling, a refreshment break and art-viewing in small groups. Visual analogue scales were used to rate subjective wellbeing pre and post each activity. Results: Mixed-design ANOVAs indicated wellbeing significantly increased during the session, irrespective of the order in which the activities were presented. Wellbeing significantly increased from object-handling and art-viewing for those with dementia and caregivers across pooled orders, but did not in the social activity of a refreshment break. An end-of-intervention questionnaire indicated that experiences of the session were positive. Conclusion: Results provide a rationale for considering museum activities as part of a broader psychosocial, relational approach to dementia care and support the use of easy to administer visual analogue scales as a quantitative outcome measure. Further partnership working is also supported between museums and healthcare professionals in the development of non-clinical, community-based programmes for this population