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.

Renal replacement therapy choices for pre-dialysis renal patients.

With the numbers of patients developing end-stage renal failure predicted to increase over the coming years, more patients than ever will be expected to choose their future form of renal replacement treatment. This study explored the decision-making processes of pre-dialysis patients to elucidate how these choices were made. Nine pre-dialysis patients were interviewed, transcripts of which were analysed using interpretative phenomenological analysis. Four main themes relating to the decision-making process emerged: maintaining one's integrity, forced adaptation, utilizing information, and support and experiencing illness. While making a decision was an individualized process, contextualized within participants' illness experiences, these core themes emerged for the whole group, irrespective of the chosen treatment modality. For renal services, there is a need to tailor information provided to pre-dialysis patients and to become cognizant of the contexts in which they live and operate.

A psychometric evaluation of the Hospital Anxiety and Depression Scale in patients diagnosed with end-stage renal disease.

OBJECTIVES: To determine the psychometric properties of the Hospital Anxiety and Depression Scale (HADS) in patients with end-stage renal disease (ESRD) and determine the suitability of the instrument for use with this clinical group. DESIGN: Between-subjects and cross-sectional design. The independent variable was type of treatment for ESRD. The dependent variables were HADS total (all items) and HADS anxiety and depression subscale scores. METHODS: Group differences in HADS scores were determined using between-subjects one-way analysis of variance (ANOVA). Exploratory and confirmatory factor analyses were conducted on the HADS to determine its psychometric properties in 160 patients with ESRD. Seven models were tested to determine model fit to the data. RESULTS: None of the seven models tested proved to be an adequate fit to the data. Treatment modality was found to have a significant impact on HADS-assessed levels of anxiety and depression. CONCLSIONS: The clinical utility of the HADS in the assessment of anxiety and depression in ESRD patients may be enhanced by using the HADS total (all items) score as an index of psychological distress. Further research is required to establish the appropriateness of using the HADS to screen ESRD patients.