Recovery Colleges and Dementia Courses – A Scoping Survey

Purpose: This project aimed to understand how dementia is represented within current UK Recovery College courses and how people with dementia are involved with such courses. Design: A scoping survey was developed with seven multiple choice questions. Information was collected to find out: How many Colleges are currently offering dementia courses; have previously offered courses or plan to start offering courses; how they have developed their courses; who delivers them; who can attend; and how long they have courses been running. Individual Recovery Colleges could leave contact details if they were interested in collaborating on future research projects. UK Recovery Colleges were identified using a published list (Anfossi, 2017) supplemented with internet searching. 86 email messages were sent to Recovery Colleges inviting Leads/Managers to complete the survey through an electronic link. Findings: Of the 28 (32.6%) Recovery Colleges who completed the survey, eleven reported to be currently offering dementia courses, with eight planned to start doing so. Six Recovery Colleges stated they were not currently offering dementia courses, have not done so previously and have no current plans to. Research Implications: The survey results indicate variability in provision of UK Recovery College courses for people with dementia, and raise further questions about the way the courses are used, their acceptability and usefulness. Originality: This service evaluation highlights the variability in what is offered, which is an important step in understanding the current service provision

Embedding patient and public involvement: managing tacit and explicit expectations

Background: Evidencing well-planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematised and unchallenged. Objective: To critically evaluate the implementation of PPI activity, including co-research in a programme of research exploring ways to enhance the independence of people with dementia. Design: Using critical cases we make visible and explicate theoretical and moral challenges of PPI. Results: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co-applicant, PPI advisory member and a co-researcher. Case 2 explores tensions which arose when working with carer co-researchers during data collection; here the co-researcher’s wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co-research data coding and interpretation activities undertaken with people with dementia; reporting the theoretical outputs of the activity and questioning whether this was co-researcher analysis or PPI validation. Conclusion: PPI activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public

‘It’s my own fault’: Accounts and consequences of falling when living with rheumatoid arthritis

Introduction: Rheumatoid Arthritis (RA) leads to biomechanical joint changes which increases risk of falling. The consequence of falling may be physical injury. However, as important can be the psychological consequences including fear of falling. Methods: Participants were recruited from a larger prospective study which explored the incidence of falls in people with RA. Purposive sampling considered age, sex, time since diagnosis and fall history. The recruitment site was a regional hospital. Data from semi-structured qualitative interviews and, after each fall, brief telephone interviews. Thematic analysis methods were used to investigate the psychological and social impact of falling in people with RA. Results: Twelve participants were interviewed (aged 64-85, mean 74 years: 6 had fallen between 1-23 times: 6 had no reported fall in last 12 months). Data was supplemented with telephone notes from 287 post-fall telephone calls. Three themes were developed: 1) The falls Imaginary illustrates that fear of falling is not dependent on experience; 2) Agentic risk management reports on the ways people self-manage and display resilience when at risk of falling; 3) The absence of the health professional explores the ways in which people reported being unsupported by health care services. Conclusion: Fear of falling when living with RA is tangible in those who have and have not fallen. This fear may limit opportunities for full participation in life. However some people display personal resourcefulness continuing to live purposeful lives. Understanding personal responses to falling will support the development of community interventions specific to this high risk group

An occupational therapy intervention for residents with stroke living in care homes in the United Kingdom: A content analysis of occupational therapy records from the OTCH trial

Introduction: This study aimed to describe the content of occupational therapy delivered in a randomized controlled trial of United Kingdom care home residents with stroke (The Occupational Therapy in Care Homes (OTCH) trial). The trial intervention aimed to maintain or improve residents’ activity levels in relation to personal activities of daily living and mobility. Method: A qualitative design was adopted using content analysis to thematically code and analyse the occupational therapy notes of residents in the intervention arm of the trial. Treatment notes comprised of an initial assessment, a goal and treatment plan and a description of activities at each visit. A purposive sample of 50 sets of therapy notes was selected reflecting the geographical locations, care home types and resident characteristics observed in the OTCH trial intervention group. Findings: Occupational therapists individually assessed residents’ function and goals. Planning was sometimes client-centred, but not all residents were able to share personal goals. Carers impacted on the success of the intervention. Treatment outcomes in relation to increasing functional activity were noted in some cases, but not always fully realized in this frail population. Conclusion: Increasing functional activity is challenging in care home populations; future studies should assess occupational therapy for residents in relation to leisure or social activities

Pandemic policy making: The health and wellbeing effects of the cessation of volunteering on older adults during the COVID-19 pandemic

Purpose: This policy-orientated commentary aims to provide a perspective on the effects of policy changes designed to reduce the risk of infection as a result of COVID-19. The example of the abrupt cessation of volunteering activities is used to consider the policy and practice implications that need to be acknowledged in new public service research to deal with the on-going implications of the COVID-19 pandemic and for future preparedness. Design/methodology/approach: The paper will provide a critical challenge to English pandemic health policy making, in particular, the national instruction “to stop non-essential contact with others” without a strategy on how to remedy the serious side effects of this instruction, in particular on older adults. Findings: The abrupt cessation of volunteering activities of and for older people because of the COVID-19 pandemic is highly likely to have negative health and wellbeing effects on older adults with long-term and far-reaching policy implications. Originality/value: The paper combines existing knowledge volunteering of and for older adults with early pandemic practice evidence to situate an emerging health and wellbeing crisis for older adults. It emphasises the importance of immediate further detailed research to provide evidence for policy and practice following the lifting of COVID-19 related restrictions and in preparation for future crises

Maintaining social connections in dementia: A qualitative synthesis

The clinical symptoms of dementia include difficulty with speech, poor short-term memory and changes in behavior. These symptoms can affect how the person with dementia understands and performs in social interactions. This qualitative review investigated how people with mild to moderate dementia managed social connections. A systematic search of social science databases retrieved 13 articles; data were synthesized using thematic analysis. Results established the work undertaken by people with dementia to maintain and present a social persona seen as socially acceptable. Interpretations are contextualized within Goffman and Sabat's theories on 'self'. People with dementia were agentic in impression management: undertaking work to maintain recognized social roles, while being aware of when their illness led to others discrediting them. Wider recognition of strategies used to maintain a social self could inform interventions designed to increase capability and confidence in co-managing social connections following dementia diagnosis

'The dynamic nature of being a person': An ethnographic study of people living with dementia in their communities

BACKGROUND AND OBJECTIVES: A dementia diagnosis can impact on social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities. RESEARCH DESIGN AND METHODS: Focused ethnography informed by Spradley's approach to data collection and analysis. Observations in community spaces. RESULTS: Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hours of observation, and researcher fieldnotes. The overarching theme 'The dynamic nature of being a person' encapsulates participants' exhibited experiences in negotiating to attain and sustain an acknowledged place in their communities. Two sub-themes characterized contexts and actions: 1 'Being me - not dementia': participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. 2 'Resisting or acquiescing to 'being absent in place'': Participants were often able to resist being absent to the gaze of others, but some social structures and behaviors led to a person being 'in place', yet not having their presence confirmed. DISCUSSION AND IMPLICATIONS: People living with dementia can actively draw on personal attributes, familiar rituals, objects, and social roles to continue to present themselves as social beings. Identifying how post-diagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia enabling them to have a continued social presence

Responding to symptoms suggestive of lung cancer: a qualitative interview study.

BACKGROUND: Late diagnosis of lung cancer can impact on survival rates. Patients delay seeking help for a number of reasons. This study explored symptom appraisal and help-seeking decisions among patients referred to specialist respiratory services with symptoms suggestive of lung cancer. METHODS: In-depth qualitative interviews with patients as soon as possible after referral, ideally before diagnosis and mainly within 10 weeks, explored factors impacting on their pathways prior to referral. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients' beliefs and experiences, disease factors and healthcare professional influences. RESULTS: 35 patients were interviewed (aged 41-88 years, 15 women, 17 with lung cancer). All described similar presenting symptoms and triggers to seek help. Appraisal of symptoms was influenced by whether they had a lung comorbidity; seriousness of symptoms was interpreted within the context of previous illness experiences. Help-seeking was triggered when: symptoms failed to respond as expected; there was an increased awareness of symptoms of lung cancer; the public nature of a cough meant others were able to endorse help-seeking. Almost half visited the general practitioner (GP) two or more times before referral; during this period they reinterpreted initial symptoms and appraised new symptoms. The meaning given to symptoms changed over time and many became increasingly concerned they may have lung cancer. The GP played a role in ensuring timely further help-seeking but often there was little guidance on how to monitor symptoms or when to reconsult. CONCLUSIONS: Patients diagnosed with and without lung cancer had similar symptom pathways. Findings provide guidance for lung cancer awareness campaigns on the importance of social networks in endorsing patient help-seeking. The importance of appropriate advice, monitoring and safety-netting procedures by GPs for people presenting with symptoms suggestive of lung cancer is also highlighted.This report presents independent research funded by the National Institute for Health Research Programme Grants for Applied Research programme (RP-PG-0608-10045).This is the final version. It was first published by BMJ Group at http://bmjopenrespres.bmj.com/content/1/1/e00006