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.

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.

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.

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.

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.

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.

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.

The education and training needs of learning disability staff in relation to mental health issues.

Evidence suggests that people with a learning disability experience mental health problems, and thus many health and social care workers in the field of learning disabilities will come into regular contact with clients with such complex needs. Despite this, many care workers remain unsure about how to recognise or respond to service users' mental health problems. The primary aim of this study was to explore and identify the current level of knowledge, skill and confidence of learning disability care staff in responding to the mental health needs of the users of their services, in order to be able, subsequently, to design and deliver appropriate educational programmes. Findings suggest that care staff had received little or no training and few had access to screening or assessment tools. As a large number of staff who work with people with a learning disability are nurses, the issues discussed in this paper have important implications for Higher Education Institutions who provide education and training for nurses, particularly in the post-registration arena. However, the challenge for all education providers is to devise programmes that can be of mutual benefit to staff from a range of professional backgrounds and care settings, ultimately to the benefit of service users and their carers.