David Rea

Involving service users in trials: developing a standard operating procedure

BackgroundMany funding bodies require researchers to actively involve service users in research to improve relevance, accountability and quality. Current guidance to researchers mainly discusses general principles. Formal guidance about how to involve service users operationally in the conduct of trials is lacking. We aimed to develop a standard operating procedure (SOP) to support researchers to involve service users in trials and rigorous studies.MethodsResearchers with experience of involving service users and service users who were contributing to trials collaborated with the West Wales Organisation for Rigorous Trials in Health, a registered clinical trials unit, to develop the SOP. Drafts were prepared in a Task and Finish Group, reviewed by all co-authors and amendments made.ResultsWe articulated core principles, which defined equality of service users with all other research team members and collaborative processes underpinning the SOP, plus guidance on how to achieve these. We developed a framework for involving service users in research that defined minimum levels of collaboration plus additional consultation and decision-making opportunities. We recommended service users be involved throughout the life of a trial, including planning and development, data collection, analysis and dissemination, and listed tasks for collaboration. We listed people responsible for involving service users in studies and promoting an inclusive culture. We advocate actively involving service users as early as possible in the research process, with a minimum of two on all formal trial groups and committees. We propose that researchers protect at least 1% of their total research budget as a minimum resource to involve service users and allow enough time to facilitate active involvement.ConclusionsThis SOP provides guidance to researchers to involve service users successfully in developing and conducting clinical trials and creating a culture of actively involving service users in research at all stages. The UK Clinical Research Collaboration should encourage clinical trials units actively to involve service users and research funders should provide sufficient funds and time for this in research grants.

Managing performance and performance management: Information strategy and service user involvement

The involvement of service users is extolled in National Service Frameworks and, in Wales, is one of seven standards set out in the National Service Framework for mental health services. National Service Frameworks have an important role in the UK governments performance management strategies. The strategies are retrospective in effect and offer insufficient help for service managers and others seeking to change and improve service performance. Draws on research conducted at intervals over the past four years in Swansea. In todays devolved UK, the details will be different in Wales from elsewhere but the focus is on how a number of organisations with differing responsibilities can work together to manage performance improvement. Demonstrates that change requires leadership to be dispersed across organisational boundaries. Accountability and responsibility must be horizontal and even downwards, not just upwards to government Service users can b e involved in their own care. Surveys that involve service users in their planning stages can gather information about the service issues that matter to them. Managing performance is different from performance management. It can ultimately enable services users to initiate and direct some of the improvements they want to see and to take part in the processes of change. The information systems must be locally useful for all involved, and must offer information about performance in time to affect improvement and change.

Towards routine user assessment of mental health service quality performance

The need to incorporate mental health service users in routine measurement of service effectiveness is included among recent policy proposals. However, mental health services pose particular problems of measurement and may prevent the acceptance of measures that are both comparable and meaningful. This paper outlines some of the major difficulties to be faced in routinely measuring quality of mental health services and taking users’ views into account. It then proposes a minimum specification for any measure of quality that places mental health service users at the centre of the process.

Including service users in trials and rigorous studies in health and social care: developing a standard operating procedure for researchers

Background Involving service users in research is encouraged as a way to improve research quality, relevance and accountability and is a pre-requisite for many funding bodies. Existing guidance for researchers on how to do this mainly discusses general principles. Some researchers may question the value, feasibility and impact of including service users and limit the scope of involvement. We defined service users as patients, carers, people eligible for a service or anyone relevant to the trial inclusion criteria.

Changing practice: involving mental health service users in planning service provision.

Abstract Changes to professional work now ensure that social care and health care workers should be accountable to service users, and not only to their professional colleagues. This paper seeks to explore how this may eventually be realised in new working relationships that will profoundly affect mental health social work. These changes are driven by factors that are external to the social work profession-in policy initiatives that introduce measures of performance that incorporate the service user in both evaluating and planning services, in efforts to build new relationships, and in a breakdown of barriers between social work practitioners and service managers. While these changes are sometimes likely to be resisted by practitioners and service users alike, the demands of policy makers for a new professional accountability to service users can be used to pave the way for effective dialogue. The paper outlines the steps necessary to build confidence among both service users and service providers. This requires sensitive management and leadership. It also requires that action demonstrably follows from such dialogue. The paper uses evidence from Community Mental Health Teams in Swansea, over a three-year period, to demonstrate how the policy and management imperatives faced by service providers can be reconciled with the expressed desires of mental health service users.

Significant differences in maternal child-feeding style between ethnic groups in the UK: the role of deprivation and parenting styles

BACKGROUND Nonresponsive maternal child-feeding interactions, such as restricting, pressurising and emotional feeding, can affect the ability of a child to self-regulate intake and increase the risk of becoming overweight. However, despite findings that South Asian and Black children living in the UK are more likely to be overweight, UK research has not considered how maternal child-feeding style might differ between ethnic groups. The present study aimed to explore variations in maternal child-feeding style between ethnic groups in the UK, taking into account associated factors such as deprivation and parenting style. METHODS Six hundred and fifty-nine UK mothers with a child who was aged 5-11 years old completed a questionnaire. Items included ethnicity and demographic data, as well as copies of the Child Feeding Questionnaire, Parental Feeding Styles Questionnaire and Parenting Styles and Dimensions Questionnaire. RESULTS Significant differences in perceived responsibility (P = 0.002), restriction (P = 0.026), pressure to eat (P = 0.045), instrumental feeding (P = 0.000) and emotional feeding (P = 0.000) were found between the groups. Mothers from South Asian backgrounds reported higher levels of pressure to eat, emotional feeding and indulgent feeding styles, whereas mothers from Chinese backgrounds reported greater perceived responsibility and restriction. Mothers from Black and White British backgrounds were not significantly higher with respect to any behaviour. Maternal child-feeding style was also associated with deprivation and parenting style, although these did not fully explain the data. CONCLUSIONS Understanding cultural factors behind maternal child-feeding style, particularly around pressurising and indulgent feeding behaviours, may play an important part in reducing levels of children who are overweight and obese in the UK.