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User participation

Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

Thu, 07/20/2017 - 15:22

User and carer involvement in social work education - a university case study: manipulation or citizen control?

This paper provides an account of one university's experience of involving service users and carers in the delivery of the new undergraduate and postgraduate social work degrees. It poses the question as to whether user and carer involvement in social work education can be viewed as a means of promoting citizen participation or whether it is a case of manipulating relatively powerless groups. In addressing this question, service users and carers and social work tutors describe, from their own distinct perspectives, the processes in which they were both involved.

Thu, 07/20/2017 - 15:21

In-patient psychiatric care for individuals with intellectual disabilities: the service users' and carers' perspectives

Background: Little is known about the experiences of individuals with intellectual disabilities and additional mental health problems who are admitted for inpatient psychiatric care. In the UK such care is delivered in both generic psychiatric and specialised treatment settings.

Aims: The present study explored service users' and carers' views on in-patient psychiatric treatment received across these two settings.

Thu, 07/20/2017 - 15:21

User involvement in social work education: Macedonian perspective

Involving service users and carers in the education and training of social workers is higher on the agenda in developed countries than ever before. Higher education institutions that run these programmes are required to involve service users and carers at all levels of the design and delivery of the programmes. The experiences of user involvement in social work education in the countries of transition, such as Macedonia, are however lacking.

Thu, 07/20/2017 - 15:21

The carer's role in planning care for people with dementia

For the past 15 years a central theme of government health-care policy has been to encourage the health service to change the way it relates to those who use it. Recent health policy documents such as Our National Health: A plan for action, a plan for change (Scottish Executive, 2000) emphasise a more integrated way of working that reflects co-operative partnerships.

Thu, 07/20/2017 - 15:21

The caring experience: learning about community care through spending 24 hours with people who use services and family carers

This paper describes a teaching and learning initiative developed in a UK social work programme that has involved carers, service users, academic social work staff and practitioners. Post‐graduate student social workers spend 24 hours in agreed periods with family carers or people who use social work services. The paper explains the origins of this initiative, rooted in a model of service user and carer involvement established over a number of years within the social work programme at the University of Dundee, Scotland.

Thu, 07/20/2017 - 15:21

Enhancing working partnerships with carers and families: a strategy and associated training programme

This paper describes the increased national focus on including families and carers in all aspects of mainstream mental health services. It proposes that the specific recommendations included in the National Service Framework for Mental Health be brought together in the form of a strategy to enhance working partnerships with families and carers. It advocates that the implementation of the NSF requires a comprehensive awareness and basic skills training in order that the consideration of families and carers becomes a routine part of mainstream services. 

Thu, 07/20/2017 - 15:21

Training in partnership: role of service users with intellectual disability and carers

The participation of service users with intellectual disability and carers is essential in medical and psychiatric training at all levels.

Thu, 07/20/2017 - 15:21

A participatory action research project evaluating a carers' representation group : Carers Against Stigma

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective.

Thu, 07/20/2017 - 15:20

Bipolar disorder in adults: QS95

This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes.

Thu, 07/20/2017 - 15:20