Developing a dementia friendly approach to consent in dementia research.

OBJECTIVES: This paper explores the process of gaining consent from the perspectives of people living with dementia, their relatives/carers, and service providers. This is developed based on new primary qualitative research and addresses a gap in critical reflection on the practice and ethical process of research consent. METHODS: A qualitative approach was used to conduct this research through the implementation of four focus groups run with people living with dementia (n = 12), two focus groups with family members (n = 6), two focus groups with service staff (n = 5). RESULTS: Data was analysed thematically, to identify two core themes: consent as a journey and the flexible consent approach. These identified concerns with autonomy, decision making and placing people living with dementia at the centre of the consent process. The journey of consent emerged as central to supporting participation and enhancing the consent process. CONCLUSION: The paper presents new evidence about the lived experience of research consent in the field of dementia, presenting the process of collecting consent in research as a flexible process that is best supported through a growing knowledge of participants and participation sites.

Leaving it at the gate: A phenomenological exploration of resilience in mental health nursing staff in a high-secure personality disorder unit.

AIMS AND DESIGN: This study reports a qualitative phenomenological investigation of resilience in nursing staff working in a high-secure personality disorder service. METHOD: Interviews were carried out with six nursing staff, and these captured the richness and complexity of the lived experience of nursing staff. RESULTS: Four superordinate themes emerged from the analysis: Management of emotions: participants showed an awareness that their job is about giving care to patients who may present with very challenging behaviours. The care that they offered was conceptualized as something that needed to be provided in a measured way, with boundaries. A clear distinction was drawn between 'caring personally' for patients, and 'providing care'. Teamwork: teamwork was cited as a major influencing factor by all participants. This was seen as directly impacting the smooth running of the ward, and therefore on the well-being of nursing staff, but also of patients. Understanding: nursing staff were acutely aware that they were working in an environment where everyday interactions would be open to intense scrutiny and possible misinterpretation by patients. Work-life balance: All the participants spoke of making a conscious effort to have a separate work and home life, which was influenced by a number of factors. CONCLUSION: The article has discussed the themes of managing emotion, team understanding and work-life balance, illustrating how each contributes to the resilience of nursing staff in this challenging environment. New insights - applicable in both national and international contexts - have been produced. IMPACT: In secure environments, mental health nursing staff need organizational support and assistance to develop ways of managing difficult experiences with patients, systems that promote recovery, and educational and supervisory support to help understand and process the effects on them. This article provides evidence to support the work of managers and clinicians in these environments. No Patient or Public Contribution.

The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research.

Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.

Promoting prompt help-seeking for symptoms - assessing the impact of a gynaecological cancer leaflet on presentations to primary care: a record-based randomised control trial.

BACKGROUND: Information leaflets have been shown to significantly improve awareness of the symptoms of gynaecological cancers and to reduce perceived barriers to seeking medical help. This record-based, parallel, randomised control trial study aimed to assess whether receipt of a leaflet would change the behaviour of women experiencing symptoms indicative of gynaecological cancers by prompting them to visit their general practitioner (GP). METHODS: 15,538 women aged 40 years or over registered with five general practices in Northamptonshire, UK were randomised to two groups using the SystmOne randomise facility. Those in the intervention group received an educational leaflet from their general practice explaining the symptoms of gynaecological cancers and advising symptomatic women to visit their GP. The control group were not contacted. Electronic records were interrogated to extract sociodemographic data and details of GP consultations for symptoms, tests, referrals and diagnoses relating to gynaecological cancers in the 4-month period following the mail-out of the leaflets. RESULTS: 7739 records were extracted from the intervention group and 7799 from the control group. 231 (3.0%) of the women in the intervention group, and 207 (2.7%) of the controls, presented to their GP with a relevant symptom during the 4-month period following leaflet distribution. The slightly higher rate in the intervention group did not reach statistical significance at the 5% level (RR = 1.11; 95% CI 0.92-1.33; z = 1.08; p = 0.28). There was a significantly lower mean time to first presentation in the symptomatic intervention group (57.2 days, sd = 36.5) compared to the control group (65.2 days, sd = 35.0) (t = - 2.415; p = 0.016). Survival analysis did not reveal a difference between the patterns of presentation in the two cohorts (Log Rank (Mantel-Cox) χ2 = 1.42; p = 0.23). CONCLUSION: There was no difference between intervention and control groups in the proportion of women presenting with symptoms identified in the leaflet in the four months following leaflet distribution, although the women who had been sent a leaflet presented earlier than those in the control group. A larger study is needed to test for a modest effect of leaflet distribution. TRIAL REGISTRATION: Listed on the ISRCTN registry with study ID ISRCTN61738692 on 23-8-2017 (retrospectively registered).

"Am I a student or a Healthcare Assistant?" A qualitative evaluation of a programme of prenursing care experience.

AIM: To examine the experiences of prenursing healthcare assistants (HCA) during a 6-month programme of prenursing care experience. BACKGROUND: Care experience prior to commencing programmes of nurse education is broadly considered to be advantageous. However, it is not clear how formal care experience prior to nurse education has an impact on the values and behaviours of the aspirant nurse. DESIGN: A longitudinal prospective qualitative study using focus group discussions. METHODS: Data were collected from 23 prenursing HCA during September 2013-February 2014. Three focus groups were held at the beginning, middle, and end of the programme of care experience at each of the participating hospitals. A thematic analysis was used to analyse data sets from each hospital. Findings from each hospital were then compared to reach final themes. RESULTS: Five major themes were identified in the analysis of qualitative data: personal development; positioning of role in the healthcare team; support and supervision; perceived benefits; and advice and recommendations. These themes were underpinned by deep aspirations for better care and better nurses in the future. CONCLUSIONS: Prenursing care experience can positively prepare aspirant nurses for programmes of nurse education. The benefits identified were confirmation of aspiration (or otherwise) to pursue nursing, learning opportunities, and aspiration to improve patient experience. Risks for the programme included poor supervision, role ambiguity or confusion, demotivation through a deteriorating view of nursing, and poor treatment by others. The longer term impact on values and behaviours of this cohort requires further evaluation.

'Going into the unknown': experiences of male patients in secure settings during environmental transition.

Little is known about the experiences of male patients in secure mental health and intellectual disability units during environmental transition. We interviewed patients before (n = 9) and after (n = 8) a side-to-side security transition from medium-secure wards in an older building to new wards in a purpose-built building. We inquired about transitional experiences in general and about this transition specifically. We examined interview transcripts and field notes using thematic analysis, and collated routine outcome data to gauge whether transition had obvious positive or negative effects. Qualitative analysis indicated three major themes (information, transition, and behaviour) and five overlapping subthemes (positive information sharing and consultation, concerns and anxieties about lack of information, life change and opportunity, home and sense of belonging, and potential conflict). Outcome data indicated little obvious change between first and second interviews. Expressed concerns of patients about transition were largely about tangible and practical issues, including changes to rules, including smoking and prohibited items. The results highlight the need for the development of supportive patient-inclusion strategies, consistent and transparent communication processes, and a published timeframe during the planning and implementation phases of all types of transitional moves, including the side-to-side transfer of residents between accommodation buildings.

Partners in projects: preparing for public involvement in health and social care research.

In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design.

Enabling patients with respiratory symptoms to access chest X-rays on demand: the experience of the walk-in service in Corby, UK.

BACKGROUND: UK clinical guidance for lung cancer (NICE 141) includes pathways for chest X-rays (CXRs). Many patients fulfilling the criteria do not receive one, either because they do not consult their doctor or because their doctor does not refer them. The town of Corby, UK, has particularly high incidence and mortality rates for lung cancer and was chosen as a pilot site for a new, patient-requested X-ray service. METHODS: The number of community-initiated CXRs were compared before and after the introduction of the service and between similar geographical areas. Clinical data and patient questionnaires were analysed for those attending the service. RESULTS: There was a 63% increase in the total number of community-initiated CXRs in Corby for the year following the introduction of the service, compared with the year before. This was statistically greater than in surrounding geographical areas. Corby General Practitioners also requested 47% more CXRs than in the previous year. CONCLUSIONS: The implementation of the service was associated with a significant increase in the numbers of clinically indicated CXRs in an area of high lung cancer incidence and mortality. The service attracted a clinically appropriate population. The numbers of cancers detected were in line with statistical expectations.

Exploring attitudes and behaviour towards teenage pregnancy.

This article illustrates a methodological approach, which actively engaged 14 to 19 year olds in the research process. This two phase study explored the attitudes and behaviours of young people towards teenage pregnancy in Northamptonshire, UK. The first phase involved training young mothers to lead six focus groups with three specifically targeted 'at-risk' groups; other teenage mothers, young offenders and looked after children (from 14 to 19 years of age). An open question began each focus group but the young women or peer researchers were aware of the topics they wished to explore and provided prompts as necessary. Seven topics are presented under the headings of: alcohol and drugs; planned pregnancy; professionals' treatment; need for love; support by family, friends and partners; labelling and the reality for teenage mothers; and future aspirations. The reasons for pregnancy or consequences of pregnancy are discussed under the implications and recommendations.