Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers' views and experiences in the UK.

BACKGROUND: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. METHODS: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi-structured interviews with two family carers, eight paid carers and eight healthcare professionals. FINDINGS: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. CONCLUSIONS: Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post-diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.

Constructions of Decision Making for Risk-Reducing Mastectomy.

This research article explores constructions of the decision-making process for risk-reducing mastectomy and considers the consequent role and responsibility of clinical psychologists. Using a Foucauldian discourse analysis approach, three online newspaper articles, five online forums, and four semi-structured interviews were analyzed. Seven discursive constructions are identified and discussed within three broader discourses of mental illness, risk, and embodied selves. Primary conclusions highlight the role for clinical psychologists and health professionals to incorporate the multiple social and political factors involved in discourses that shape decision making. The role of power is critically considered and there is a need for further analysis of "talk" among health professionals.

Tolerating Uncertainty: Perceptions of the Future for Ageing Parent Carers and Their Adult Children with Intellectual Disabilities.

BACKGROUND: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. METHODS: Semi-structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework. RESULTS: 'Tolerating uncertainty' was the major theme in participants' attempts to manage anxieties about the future, encompassing sub-themes of 'accepting the parenting role', 'facing challenges', 'being supported/isolated', 'positive meaning making', 're-evaluating as time moves on' and 'managing future thinking'. Some participants expressed preferences for their future which were in contrast to their parents' views, and provide a unique perspective that has often been neglected in prior research. CONCLUSIONS: This research has found commonalities in how families tolerate the uncertainty of the future, but also unique differences that require tailored interventions and prospective action by services.

Use of reflexivity in a mixed-methods study.

AIM: To present a novice researcher's use of a reflective research diary in the quantitive measure of a mixed methods study and to recommend resulting changes to practice. BACKGROUND: Reflexivity is often regarded as a useful tool for ensuring the standard of qualitative research. Reflexivity provides transparent information about the positionality and personal values of the researcher that could affect data collection and analysis; this research process is deemed to be best practice. A reflective research diary also allows researchers to record observations about the research process. However, such diaries are rarely used in quantitative research and are even contraindicated. DATA SOURCES: A reflective research diary maintained while conducting a retrospective audit of 150 hospice casenotes. REVIEW METHODS: A reflective research diary was written at the end of every research session to keep a detailed history of the research process and to critically reflect on the researcher's thoughts, feelings and observations on the day's work. DISCUSSION: This paper raises questions about whether reflexivity is appropriate in quantitative research, whether it has the capacity to add something of value or whether it endangers the robustness of the method. The authors consider the place of grounded theory's commitment to reflexivity in this mixed-methods study and discuss whether reflexivity offers any benefits to researcher development. CONCLUSION: Use of reflexivity had a positive impact on the progress of the quantitative measure of this study: it enabled work to be reviewed efficiently and served to inform future research practice. Reflexivity stimulated the acquisition of researcher skills and contributed positively to the development of confidence in the novice researcher. IMPLICATIONS FOR RESEARCH/PRACTICE: Reflexivity in quantitative research practice can be an effective, ongoing means of critically reviewing work, process and researcher development. Reflexivity is recommended to other quantitative researchers.

Adolescents who self-harm: professional staff knowledge, attitudes and training needs.

This study aimed to investigate professional staff attitudes and knowledge about adolescents who engage in self-harming behaviour and to identify training needs. Previous research has suggested that medical and health care staff perceptions may reinforce the stigma associated with such behaviour and therefore jeopardise the effectiveness of interventions. To date, no available research exists on the views of school teachers. Participants recruited for the study were 120 qualified professionals working within an Accident and Emergency Department (A&E), Child & Adolescent Mental Health Services (CAMHS) and a Secondary School, based within the West Midlands, United Kingdom. Results demonstrated statistically significant differences between the groups. CAMHS staff were more knowledgeable and felt more effective than either A&E staff or teachers, whereas A&E staff expressed more negative attitudes. 95% of all staff reported that they would benefit from further training. These findings are discussed in relation to practice issues.

Recovery, place and community mental health services.

BACKGROUND: While some studies have examined recovery in relation to specific contexts (e.g. housing and work), few have looked in detail at the social and environmental conditions in which recovery occurs. AIMS: To explore the relationship between the recovery of people receiving community mental health services and the places in which they live; to generate knowledge concerning aspects of locality which impact on recovery. METHOD: Grounded theory methodology was employed as a framework for collecting and analysing qualitative data. The study incorporated aspects of Photovoice ( Lopez et al., 2005 ) and ethnography. RESULTS: Four overlapping theoretical accounts are presented. These are: housing, space and agency; representations of social identity; natural environments; and replacement communities. CONCLUSIONS: Recovery can be understood as a variety of interacting ecological processes occurring in the context of the social, economic and physical environment. This offers new ways of thinking about recovery-orientated services.

A literature review of interprofessional working and intermediate care in the UK.

AIMS AND OBJECTIVES: This systematic literature review aimed at addressing two questions: first, what evidence exists regarding intermediate care in the UK; and what interventions have been used to develop interprofessional working in intermediate care in the UK? A systematic review of the literature from 2000-2006 resulted in a total of 104 full-text articles describing research into intermediate care in the UK. BACKGROUND: The review was the first stage of a large, national project evaluating and developing interprofessional working among health and social care staff, particularly in relation to the intermediate care of older people. DESIGN: Systematic literature review. METHODS: All the literature was reviewed by one reviewer, and a second review was carried out by a team of reviewers to ensure each article was reviewed twice, independently. One article was reviewed by all the reviewers to ensure inter-rater reliability; finally, all the reviews were amalgamated, which resulted in one summary per article. RESULTS: The main findings drawn from this systematic literature review are that research carried out on intermediate care in the UK has a diverse set of aims, for example economic evaluations, delivery of intermediate care and exploring the views and perceptions of those involved in intermediate care. CONCLUSIONS: Although several articles include discussions about the importance of interprofessional working in intermediate care, no article specifically focused on the interprofessional focus of intermediate care, and there was no research about interventions used to develop interprofessional working. RELEVANCE TO CLINICAL PRACTICE: Intermediate care as a policy has been interpreted very differently across the four countries of the UK; there is no one preferred or consistent interpretation to its delivery.

Identifying, documenting, and reviewing preferred place of death: an audit of one UK hospice.

BACKGROUND: Current UK health-care policy suggests that good end-of-life care includes choosing a place for death. This paper examines the extent to which patients' preferred place of death (PPD) is identified, documented, and reviewed in one UK hospice. METHOD: A total of 150 case notes were audited using a data capture form. Case notes of patients who died in January 2008 (n=50), January 2009 (n=50), and January 2010 (n=50) were accessed during September-November 2010. The data are presented using descriptive statistics. RESULTS: PPD was documented in 28 cases (18.6%), conversations about end-of-life preferences were documented in 16 cases (10.6%), and preferences were reviewed in 6 cases (4%). Of the 28 patients whose preferences were documented, 25 (89.2%) died in their stated place of choice. CONCLUSIONS: Rates of PPD identification, documentation, and review were low at this hospice. This raises further research questions about how and why end-of-life choices are being made.

Inclusion of lay people in the pre-registration selection process.

The Nursing and Midwifery Council recommends that pre-registration nurse education programme providers involve lay people in the student selection process. The School of Nursing and Midwifery at Keele University undertook a project to develop and evaluate the inclusion of lay people in the pre-registration recruitment and selection process. This article discusses the development and evaluation of the project and provides recommendations for practice.

Interprofessional education and working in mental health: in search of the evidence base.

AIM: To explore interprofessional attitudes arising from shared learning in mental health. BACKGROUND: Inter-professional education in healthcare is a priority area for improving team-working and communication. Many studies have attempted to evaluate its benefits and challenges, although few emanate from the mental health arena. However, producing evidence to link educational input with clinical outcomes is notoriously difficult. This project attempted to produce evidence for changes in interprofessional attitudes and stereotypes. METHOD(S): Mental health nursing students and clinical psychology trainees participated in inter-professional education. An evaluation tool was designed to evaluate the experience and outcomes, and to consider implications for interprofessional working. RESULTS: There was an increase in clarity regarding roles, approaches and resources, and how to collaborate in practice. There was no significant change in professional identity. Many challenges were identified, including differences in academic level, previous experience, expectations, assessment, motivation and effort. CONCLUSION: Despite the challenges, it remains important to offer collaboration with future mental health colleagues as a foundation for effective team-working. Recommendations are made for creating inter-professional education opportunities for diverse student groups. IMPLICATIONS FOR NURSING MANAGEMENT: Mental health professionals need to work effectively in multidisciplinary teams. Drawing on available guidance, managers should encourage and support team members to undertake shared learning where possible, both within clinical settings and through more formal educational provision. In this way, managers can facilitate collaborative relationships which will pay dividends for the provision of effective mental health care. This project adds to the limited knowledge currently available on interprofessional learning and attitudes within a mental health context.

Experiences of user involvement in mental health settings: User motivations and benefits.

WHAT IS KNOWN ON THE SUBJECT?: User involvement, when people who have accessed services become actively involved in aspects of mental health care, can sometimes be "tokenistic" and not well thought through. Users are often involved in their own care, and asked for feedback, but are less likely to be meaningfully involved in developing services and training staff. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: To implement meaningful involvement, it is important to know why some users choose to devote time to such activities. User representatives in this study, involved in a UK mental health service, wanted to help people in a similar position and give something back to those that helped them. As people started involvement activities, such as interviewing staff, they gained confidence and felt part of something that was making a difference. After being supported by staff to explore opportunities, representatives become more independent and some moved to different, sometimes salaried, roles. Some representatives did not feel valued or supported. Staff often controlled opportunities, and many users missed out on being involved. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Staff need to understand and receive training on involvement. The definition of involvement should be agreed by users and staff together, and outcomes of involvement activities must be fed-back to users on a regular basis. There should be dedicated involvement workers in services, to support individuals and integrate involvement into the system. It is important to consider how to make involvement accessible to more mental health service users. ABSTRACT: Introduction Despite guidance promoting user involvement, meaningful involvement continues to be debated within services. To effectively implement involvement, it is important to acknowledge why users devote time to such activities. Aim This study explores user representatives' experiences of involvement, including motivations and personal benefits. Method Thirteen user representatives involved in activities such as staff training and interviews were recruited from a UK National Health Service mental health Trust during 2015. Themes within semi-structured interviews were developed using constructivist grounded theory analysis. Memo-writing, process and focused coding, and core categories supported development of the conceptual framework of being a user representative. Findings Being a user representative was inextricably linked to wellness, yet staff governed opportunities. Making a difference to others and giving back were initial motivating factors. Experiences depended on feeling valued, and the theme of transition captured shifts in identity. Discussion User representatives reported increased confidence and well-being when supported by staff. However, involvement triggered mental health difficulties and identified the need for regular monitoring and reflection of involvement activities and practice. Implications for practice Services should consider coproduction, where users and staff agree together on involvement definitions. Dedicated involvement workers are crucial to supporting individual well-being and monitoring involvement.

Harnessing collaboration to build nursing research capacity: a research team journey.

This paper discusses a qualitative evaluation study, designed to explore nursing lecturers' research capability development through their engagement as co-researchers in a larger case study project (referred to as the 'main project'). It explores the justification for supporting research capacity development using this collaborative approach, the process and experience of undertaking collaborative research, and the effectiveness of this model of collaboration in developing new researchers. The paper also makes connections between the process of undertaking the research (designed to offer opportunities for inexperienced researchers to be involved) and the main project findings (which explored the ways in which academic schools develop research capacity). We first set the main project in its wider context and map key issues relating to research capacity development and collaboration in the literature, before outlining how we involved neophyte and 'midiphyte' researchers. The evaluative study, which is the focus of this paper, discusses the experiences of the neophyte researchers, and explores the synergies between the main project's key findings and the process of undertaking it. We conclude with some principles for using collaboration to build research capacity, visualised through a conceptual model. While this project was located within two universities in the UK, the development of research skills amongst nurses is likely to have broad international relevance. NB1 References to 'nursing', 'nursing research', and 'nursing education' are taken throughout to apply equally to midwifery, midwifery research, and midwifery education. NB2 For the purpose of this project, neophyte researchers are defined as staff needing formal training in research and involvement in others' research, and 'midiphyte' researchers as those with some training but needing support to develop research ideas.

Education: improving quality through service enhancement.

The quality of service provision in educational contexts is becoming increasingly important. There is a need to demonstrate value for money and convey a positive image to retain and attract students and other stakeholders. This article examines the concept of service and its relevance to nurse education in the UK.

Helping student nurses to identify and respond to the psychological needs of physically ill patients: implications for curriculum design.

It is universally accepted that nursing practice is predicated upon the notion of holistic care, in that nurses need to address not only the physical needs of ill patients but also their psychological, social, spiritual, and environmental needs. However, there is considerable evidence to suggest that nurses often inadequately identify and respond to patients' psychological needs, sometimes with adverse consequences for physical health and recovery. This may be because they do not fully understand the concept of psychological care, or have been inadequately prepared or educated to deliver it in practice. Following a summary of relevant literature and an overview of findings from a larger study of the nature and experience of psychological caregiving, this paper discusses specific findings on preparing nurses for their psychological caregiving role. The paper proposes a curriculum framework designed to enhance awareness, knowledge, and skill in effective psychological caregiving in nursing practice, to the ultimate benefit of physically ill patients. For the purposes of this paper, psychological care is taken to mean one element of the broader concept of care, rather than being synonymous with it.

Reliability and validity in research.

This article examines reliability and validity as ways to demonstrate the rigour and trustworthiness of quantitative and qualitative research. The authors discuss the basic principles of reliability and validity for readers who are new to research.

Examining experiences of transition, instability and coping for young offenders in the community: A qualitative analysis.

This article explores experiences of transition, instability and coping using a qualitative approach with young offenders within a specialist forensic child and adolescent mental health service (CAMHS). Participants were four young people (aged 14-17 years) on community orders under the supervision of local youth offending teams (YOTs). Semi-structured interviews were conducted and data analysed using an inductive thematic analysis approach. Three main themes were identified: (i) people and places; (ii) growth; and (iii) managing difficult experiences. Findings suggest that young offenders are exposed to a wide range of challenging contextual factors including unpredictable or inadequate home environments, numerous transitions (between family members/foster placements and schools), limited engagement with educational settings and a lack of social support, supporting the findings of Paton et al. Findings also portrayed a sense of participants' 'psychological growth' with development along a trajectory from a young child 'acting out' in response to the environments in which they were living; through a more reflective stage, in which they were able to begin to consider the situations they found themselves in; before reaching a position in which they were able to look beyond their day-to-day circumstances with some hope that their lives could be different in the future. Furthermore, accounts revealed that these young people had a limited range of functional coping strategies and had largely negative experiences of services. Clinical implications and the need for further research developing professionals' understanding of the influence of early experiences on young offenders' behaviour are discussed.

Making the most of opportunities..

When asked to contribute to the Making My Mark series, my immediate response was to agree. Once I had done so, I began to wonder what sort of mark I have actually made. For inspiration, I looked back at previous papers in the series, to establish where, in the grand scheme of things, my contribution to nursing and healthcare research might lie. I found papers written by both highly experienced and internationally known researchers and by those just starting out on a research career. My position lies somewhere between these two, and if I can borrow a term coined by a research collaborator, Dr Jeremy Segrott, University of Wales Swansea School of Health Care, I would describe myself as a 'midiphyte' (someone with postgraduate training and hands-on research experience, but who has yet to become a totally independent and self-supporting researcher). To borrow a term from another colleague, I also see myself as something of a 'butterfly'; someone who is still defining a clear research niche and who has engaged with a number of different projects as the need or opportunity has arisen.

An approach to the phenomenological analysis of data.

In this paper, Helena Priest describes and justifies a phenomenological research method that may be used to explore complex and nebulous concepts relevant to nursing and health care, for example, the concept of 'caring'. The history and development of Husserlian phenomenology are outlined, followed by an account of the use of phenomenology within nursing research. Tensions inherent in the use of Husserlian phenomenology in nursing research are noted. A phenomenological approach to data analysis, designed to address some of these tensions, is described and compared with several well-established phenomenological analysis strategies. Issues of reliability, validity and generalisability are discussed, as are limitations in the use of the approach, before conclusions relevant to healthcare researchers are drawn.

An approach to the phenomenological analysis of data.

In this paper, Helena Priest describes and justifies a phenomenological research method that may be used to explore complex and nebulous concepts relevant to nursing and health care, for example, the concept of 'caring'. The history and development of Husserlian phenomenology are outlined, followed by an account of the use of phenomenology within nursing research. Tensions inherent in the use of Husserlian phenomenology in nursing research are noted. A phenomenological approach to data analysis, designed to address some of these tensions, is described and compared with several well-established phenomenological analysis strategies. Issues of reliability, validity and generalisability are discussed, as are limitations in the use of the approach, before conclusions relevant to healthcare researchers are drawn.

An overview of three different approaches to the interpretation of qualitative data. Part 1: Theoretical issues.

In this paper, the first of two, Helena Priest, Paula Roberts and Leslie Woods discuss the essential features and methods inherent within three approaches to the interpretation of qualitative data. An overview of three methodologies commonly used in nursing and healthcare research is presented: grounded theory, qualitative content analysis and narrative analysis. The paper considers the philosophical bases of the three methods and the principles inherent within each analytical approach. Key stages and steps are presented and described.