The legal, governance and ethical implications of involving service users and carers in research

2019 ◽  
Vol 32 (5) ◽  
pp. 818-831
Author(s):  
Virginia Minogue ◽  
Mary Cooke ◽  
Anne-Laure Donskoy ◽  
Penny Vicary
Keyword(s):  
Service User ◽  
Research Study ◽  
Ethical Issues ◽  
Research Process ◽  
Project Team ◽  
Research Management ◽  
Service Users ◽  
Content Type ◽  
Team Members ◽  
Ethical Implications

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions. Design/methodology/approach Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community. Findings Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective. Practical implications The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved. Originality/value The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

scholarly journals The state of the responsible research and innovation programme

2019 ◽  
Vol 17 (2) ◽  
pp. 145-166
Author(s):  
George Inyila Ogoh ◽  
N. Ben Fairweather
Keyword(s):  
Intellectual Property ◽  
Ethical Issues ◽  
Social Science Research ◽  
Research Process ◽  
Responsible Research And Innovation ◽  
Content Type ◽  
Ethical Implications ◽  
Research And Innovation ◽  
Horizon Scanning ◽  
Responsible Research

Purpose Many of the ethical issues of additive manufacturing (AM) are not well known or understood, and there remains a policy vacuum that needs to be addressed. This paper aims to describe an approach that has been applied successfully to other emerging technologies, referred to as the responsible research and innovation (RRI) framework programme. A case is then made for the application of this approach in the AM industry with an illustration of how it might be used. Design/methodology/approach The research uses an RRI approach referred to as AREA, an acronym for Anticipate, Reflect, Engage and Act, to assess the ethical implications of AM. For the anticipation phase, horizon scanning was done to explore the ethical issues of AM based on extant literature, while reflective analysis was carried out all through the work to reflect on the data being collected and the research process. The engage phase involved interviews with five participants from small- and medium-sized enterprises (SMEs) involved in 3D printing. Findings The findings indicate that although AM appears to pose a threat to intellectual property rights, many in the industry do not care about this issue. As AM becomes mainstream, intellectual property will likely become a big problem. Also, very little is known about the health impacts of AM. This study shows that AM can be hazardous. Research limitations/implications Only users at SME level were sampled. Other researchers might test the usefulness of AREA at the enterprise level. Practical implications The research demonstrates how the AREA framework may be useful in information systems and social science research by enabling a more anticipatory and reflective research process. Originality/value The paper responds to the need for a novel approach to identifying ethical issues of AM.

Now they’re listening: involvement in clinical psychology training

2019 ◽  
Vol 23 (1) ◽  
pp. 23-29
Author(s):  
Laura Lea ◽  
Sue Holttum ◽  
Victoria Butters ◽  
Diana Byrne ◽  
Helen Cable ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Professionals ◽  
Clinical Psychology ◽  
Health Professionals ◽  
Service User ◽  
Health Workers ◽  
Psychology Training ◽  
Service Users ◽  
Clinical Psychology Training ◽  
Content Type

PurposeThe 2014/2015 UK requirement for involvement of service users and carers in training mental health professionals has prompted the authors to review the work of involvement in clinical psychology training in the university programme. Have the voices of service users and carers been heard? The paper aims to discuss this issue.Design/methodology/approachThe authors update the paper of 2011 in which the authors described the challenges of inclusion and the specific approaches the authors take to involvement. The authors do this in the context of the recent change to UK standards for service user and carer involvement, and recent developments in relation to partnership working and co-production in mental healthcare. The authors describe the work carried out by the authors – members of a service user involvement group at a UK university – to ensure the voices of people affected by mental health difficulties are included in all aspects of training.FindingsCareful work and the need for dedicated time is required to enable inclusive, effective and comprehensive participation in a mental health training programme. It is apparent that there is a group of service users whose voice is less heard: those who are training to be mental health workers.Social implicationsFor some people, involvement has increased. Trainee mental health professionals’ own experience of distress may need more recognition and valuing.Originality/valueThe authors are in a unique position to review a service-user-led project, which has run for 12 years, whose aim has been to embed involvement in training. The authors can identify both achievements and challenges.

scholarly journals Mental health nurses’ perceptions of attachment style as a construct in a medium secure hospital: a thematic analysis

2015 ◽  
Vol 10 (4) ◽  
pp. 218-233 ◽  
Author(s):  
Nikki Boniwell ◽  
Leanne Etheridge ◽  
Ruth Bagshaw ◽  
Joanne Sullivan ◽  
Andrew Watt
Keyword(s):  
Attachment Theory ◽  
Attachment Style ◽  
Thematic Analysis ◽  
Service User ◽  
Attachment Styles ◽  
Personality Development ◽  
Educational Interventions ◽  
Service Users ◽  
Structured Interviews ◽  
Content Type

Purpose – Attachment Theory can be regarded as central to the concept of relational security. There is a paucity of research examining the coherence of this construct for ward-based staff. The paper aims to discuss these issues. Design/methodology/approach – Five female nurses from the acute admission and assessment ward of a UK medium secure unit acted as participants. Semi-structured interviews were conducted, and inductive thematic analysis was applied. Findings – Six themes; “staff-service user relationships”, “staff diversities”, “service user backgrounds”, “variability in service users’ presentations”, “service users with personality disorder are problematic” and “nurses do not use attachment” emerged from the data. The nurses used heuristic models of attachment-related behaviour and they lacked knowledge of constructs associated with Attachment Theory. Research limitations/implications – Acute admissions may not be representative of all treatment contexts. Traditional models of attachment style may have only limited relevance in forensic services. Practical implications – Limited knowledge and confidence in the nurses regarding how Attachment Theory might apply to service users is interesting because it may limit the extent to which care, treatment and risk management might be informed by an understanding of service user representations of therapeutic relationships. Training and educational interventions for nurses that enhance understanding of personality development and attachment styles are warranted. Originality/value – The importance of nurses for achieving relational security is emphasised and the adequacy of their training is questioned.

Developing a training package

2017 ◽  
Vol 30 (5) ◽  
pp. 458-466
Author(s):  
Virginia Minogue ◽  
Anne-Laure Donskoy
Keyword(s):  
Service User ◽  
Research Training ◽  
Production Model ◽  
Working Relationships ◽  
Service Users ◽  
Research Experience ◽  
Content Type ◽  
Training Package ◽  
Health And Social Care ◽  
And Training

Purpose The purpose of this paper is to outline the development of a training package for service users and carers with an interest in NHS health and social care research. It demonstrates how the developers used their unique experience and expertise as service users and carers to inform their work. Design/methodology/approach Service users and carers, NHS Research and Development Forum working group members, supported by health professionals, identified a need for research training that was tailored to other service user and carer needs. After reviewing existing provision and drawing on their training and support experience, they developed a training package. Sessions from the training package were piloted, which evaluated positively. In trying to achieve programme accreditation and training roll-out beyond the pilots, the group encountered several challenges. Findings The training package development group formed good working relationships and a co-production model that proved sustainable. However, challenges were difficult to overcome owing to external factors and financial constraints. Practical implications Lessons learnt by the team are useful for other service users and carer groups working with health service professionals. Training for service users and carers should be designed to meet their needs; quality and consistency are also important. The relationships between service user and carer groups, and professionals are important to understanding joint working. Recognising and addressing challenges at the outset can help develop strategies to overcome challenges and ensure project success. Originality/value The training package was developed by service users and carers for other service users and carers. Their unique health research experience underpinned the group’s values and training development.

Organizational anonymity and the negotiation of research access

2014 ◽  
Vol 9 (2) ◽  
pp. 98-109 ◽  
Author(s):  
Scott Taylor ◽  
Christopher Land
Keyword(s):  
Data Collection ◽  
Continuous Process ◽  
Work Organization ◽  
Research Process ◽  
Public Debate ◽  
Unintended Consequences ◽  
Organizational Research ◽  
Content Type ◽  
Ethical Implications ◽  
Organization And Management

Purpose – The purpose of this paper is to examine the part of the organizational research process, access negotiation, through reflexive analysis of the participation in a recent data collection process. The paper aims is to question two emergent norms in this area: first, that organizational anonymity be granted in exchange for organizational access; and second, that access negotiation be seen as a bounded activity at the start of data collection. Design/methodology/approach – Through the reflexive account and with reference to published accounts of practice in other research projects, the authors explore the reasons why researchers offer organizational anonymity, and note the unintended consequences of this practice. The authors locate the discussion in relation to increased expectations on social researchers to contribute to public debate about managing and organizing. Findings – The author suggests that the negotiation of access without promising anonymity may generate more situated accounts of organization, and greater participation in political or ethical debates surrounding work, organization, and management. By facilitating a clearer line of impact stemming from qualitative research, this would also aid researchers in demonstrating the value of their work in informing public debate. Social implications – The authors conclude by reiterating the potential for organizational researchers to achieve greater social and ethical impact, especially if the authors frame access negotiation as a continuous process rather simply as than a moment at the start of a project. Originality/value – The authors argue that the paper raises a key, but neglected, issue in conducting empirical organizational research, that has political and ethical implications as well as a methodological significance. Through the analysis, the authors encourage themselves and the research community to be clearer about the potential value of scholarship in debates happening outside the academy, and to see access negotiation as more complex than simply a transaction in which organizational anonymity is promised in return for data.

A knowledge sharing approach for R&D project team formation

2017 ◽  
Vol 47 (2) ◽  
pp. 154-171 ◽  
Author(s):  
Seyyed Mahdi Hosseini ◽  
Peyman Akhavan ◽  
Morteza Abbasi
Keyword(s):  
Knowledge Sharing ◽  
Project Managers ◽  
Project Team ◽  
Mixed Integer ◽  
Measurement Scales ◽  
Content Type ◽  
Team Members ◽  
Global Criterion ◽  
Global Criterion Method ◽  
Project Objectives

Purpose This paper intends to propose an approach for formation of the R&D project teams, so that in addition to the selection of the most expert individuals, facilitates the knowledge sharing among people. Design/methodology/approach Mathematical modeling was used to formulate the problem of selecting appropriate members for the project team. As the problem was formulated as a bi-objective mixed integer nonlinear programming problem, it was initially transformed from nonlinear to linear problem, and then, the global criterion method was applied to convert the problem into a single-objective problem. To collect the data for exogenous variables, the measurement scales (their validity had been verified in previous research) were adopted. Findings The results of various tests for evaluating the proposed approach in the case study confirmed its effectiveness in selecting the appropriate members of the project team. Practical implications Using the proposed approach, R&D project managers will be able to select the most appropriate members for the project team and, while ensuring the achievement of project objectives, prevent the loss of knowledge gained in the project lifecycle. Originality/value This paper is the first attempt to provide an approach for sharing the knowledge gained by the project team members in the R&D projects.

Tame clients: an evaluation of service users’ and trainee clinical psychologists’ perspective of service user involvement in teaching

2019 ◽  
Vol 14 (5) ◽  
pp. 327-338
Author(s):  
Carl Norwood ◽  
Anna Tickle ◽  
Danielle De Boos ◽  
Roberta Dewa
Keyword(s):  
Clinical Psychology ◽  
Service User ◽  
User Involvement ◽  
Clinical Psychologists ◽  
Psychology Training ◽  
Service Users ◽  
Service User Involvement ◽  
Clinical Psychology Training ◽  
Content Type ◽  
Competency Frameworks

Purpose The involvement of service users within clinical psychology training is written into policy. However, the practice of evaluating involvement from both trainees’ and service users’ viewpoint is minimal. The purpose of this paper is to evaluate recent service user involvement in psychometrics and formulation teaching on a clinical psychology training programme, from both service user and trainee perspectives. Design/methodology/approach Focus groups were held with service users (n=3) involved in the teaching, as well as trainees (n=3). Additional questionnaire data were captured from trainees (n=11). Service user and trainee data were analysed separately using thematic analysis. Themes generated for trainees were also mapped on to a competency framework for clinical psychologists. Findings Both parties found the teaching beneficial. Service users enjoyed supporting trainees and engaged positively in their roles. They identified relational aspects and reflections on their own therapy as other benefits. Trainees reported enhanced clinical preparedness, critical and personal reflection. Trainee anxiety was evident. Learning mapped well to competency frameworks. Research limitations/implications The samples were small and some data truncated. Findings speak to broader issues and may transfer to other involvement contexts. Practical implications A good degree of meaningful involvement can be achieved through such initiatives, to mutual benefit and enhanced learning. Originality/value Nature of the exercise and dual-aspect approach to evaluation described here helps to minimise tokenism. The mapping of findings to competency frameworks supports evaluative processes and helps to legitimise involvement initiatives that challenge the boundaries of existing practice.

From the service user association's perspective

2020 ◽  
Vol 28 (2) ◽  
pp. 53-63
Author(s):  
Charlotte Klinga ◽  
Johan Hansson ◽  
Henna Hasson ◽  
Magna Andreen Sachs ◽  
Carolina Wannheden
Keyword(s):  
Mental Health ◽  
Service User ◽  
Social Care ◽  
Service Users ◽  
Content Type ◽  
Care Services ◽  
Care And Support ◽  
Health And Social Care ◽  
The Individual ◽  
Integrated Mental Health

PurposeThe aim of this study was to identify key components of integrated mental health and social care services that contribute to value for service users in Sweden.Design/methodology/approachAn explorative research study design was used, based on data from four group interviews conducted in June and August 2017 with service user representatives.FindingsThe analysis resulted in eight subcategories reflecting components that were reported to contribute to value for service users. These subcategories were grouped into three main categories: (1) professionals who see and support the whole person, (2) organizational commitment to holistic care and (3) support for equal opportunities and active participation in society.Research limitations/implicationsThe findings are primarily transferable to integrated mental health and social care services, as they emphasize key components that contribute to value for service users in these specific settings.Practical implicationsThe complexity of integrated mental health and social care services requires coordination across the individual and organizational levels as well as ongoing dialogue and partnerships between service users, service user associations and health and social care organizations. In this integration, it is important that service users and service user associations not only are invited but also keen to participate in the design of care and support efforts.Originality/valueService User Associations (SUAs) can act as a bridge between county and municipal services through their participation in the development of local activities; at the regional and national levels, SUAs can help achieve more equitable integrated services. It is important that SUAs are not only invited but encouraged to actively participate in the design of such care and support efforts.

scholarly journals Assignment of project team members to projects

2019 ◽  
Vol 13 (6) ◽  
pp. 1381-1402
Author(s):  
Shankar Sankaran ◽  
Anne Live Vaagaasar ◽  
Michiel Christian Bekker
Keyword(s):  
Critical Realism ◽  
Project Managers ◽  
Project Team ◽  
Influence Strategies ◽  
Structured Interviews ◽  
Senior Managers ◽  
Content Type ◽  
Team Members ◽  
Balanced Leadership ◽  
The Right

Purpose The purpose of this paper is to investigate how project managers, influence the assignment of project team members by directly assigning or specifying who they want or by indirectly using lateral influence strategies to secure the appropriate resources. This study is part of a wider study investigating the balance between vertical and horizontal leadership in projects in which nomination (or assignment) was identified as a key event contributing to balancing the leadership. It focuses specifically on the nomination or assignment event at the start of a project. Design/methodology/approach Based on the philosophy of critical realism, case studies were used to collect data through 70 semi-structured interviews in Australia, Scandinavia and South Africa. Interviews were conducted with senior managers, project managers and project team members. Two project team members who worked with the same project manager were interviewed to gather diverse views. The data were analyzed individually by researchers from each location using a coding method proposed by Miles et al. (2014). The researchers then jointly analyzed the findings to arrive at five common themes from that explained how team members were assigned in practice. Findings Despite the recognized need for project managers to form their own teams, this study found that project team members were often assigned by others. This was because project managers lacked authority to secure their resources. Therefore, they used lateral influence strategies to help with assigning project team members. The study identified five lateral influencing strategies adopted by project managers to assign team members: creating an image of competence; creating coalitions; taking a gamble; waiting for the right moment; and reasoning with facts. Two of these lateral influencing strategies were not identified in the previous literature on influencing strategies used in organizations. Research limitations/implications The findings should not be viewed as representative of the respective continents where the cases were studied. However, this study contributes to the literature on project management, illuminating how project teams are assigned and by whom and, specifically, the role that influence plays during this event of the balanced leadership theory. It also identifies the types of lateral influence strategies used by project managers when assigning team members to their projects. It provides a pathway to explore the use of lateral influencing strategies by project managers beyond the assignment process. Practical implications This study will help project managers to become aware of influencing strategies that they can use in practice while assigning team members to their projects. It will also highlight the importance of assigning the right resources to projects with a view to achieving balanced leadership. Originality/value This research is of value to organizations using projects to successfully deliver their strategies by assigning suitable resources to their projects.

When policy fails try something different integrated practice improve outcomes for dual diagnosis co-occurring service users accessing mental health services

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Lois Dugmore ◽  
Saskia Bauweraerts
Keyword(s):  
Mental Health ◽  
Health Services ◽  
Dual Diagnosis ◽  
Service User ◽  
Substance Misuse ◽  
Service Users ◽  
User Group ◽  
Access To Services ◽  
Content Type ◽  
Drug And Alcohol

Purpose This paper aims to discuss an initiative developed between, Leicestershire Partnership National Health Service Trust and Turning Point, which is the locally commissioned drug and alcohol service in Leicester, Leicestershire and Rutland. The aim was to improve outcomes for clients with dual diagnosis (co-occurring mental health and substance misuse) issues. The purpose of the change in working practice was to engage with local substance misuse agencies more effectively to improve clinical outcomes within this service user group. This was achieved through four interrelated approaches. This comprising providing an integrated service. It included building relationships with substance misuse services, providing specialist dual diagnosis clinics and the introduction of substance misuse workers onto mental health wards and group work specific to substance misuse. The outcomes included easier access to services for service users and greater uptake of service users who were moving onto substance misuse services. This led to a reduction in risk related to prescribing and fewer incidents related to prescribing changes and greater engagement in services. When service users were moving between services better communication led to prescriptions being transferred with no delay and to reduced dropout rates in service. There was improved access to substance misuse services, more referrals and take up of service taking place. There was a greater understanding by staff of co-occurring substance misuse and how to work with this client group. Closer working relationship with substance misuse services and shared skills led to greater confidence in managing this service user group. This demonstrates a cost effective service that can be replicated within similar settings. Design/methodology/approach In clinical practice, shared treatment has proved challenging in light of different service models (Laker, 2006). Substance misuse works on the premise of change comes from the individual, where recovery models in mental health offer a formalised approach. One of the challenges faced by services has been the inability for mental health services to recruit and services become overstretched (Rimmer, 2018); this gave an opportunity for a new method of working to be considered. This led to the development of a new service model. These changes were: • Improving the interface with substance misuse services to improve access to community substance misuse services for mental health clients. • To provide specialist staff within the dual diagnosis field to provide a clinic jointly with local drug and alcohol services. • Introduction of substance misuse workers as team members on acute mental health and rehab wards. • Group Substance Misuse programmes. Findings Working within an integrated model, yet maintaining separate organisations, by offering joint training and clinics has led to a greater understanding of each organisation’s work and increased engagement within the service user group.The introduction of substance misuse workers to acute and rehab mental health inpatient services encouraged service users to engage at the point of admission and to be referred into locally commissioned substance misuse services prior to the point of discharge. Engagement with staff has demonstrated better engagement with substance service by service users following discharge.For clients able to take leave assessment could take place prior to discharge. This led to an increased uptake in services. Due to no opiate substitution given on discharge decreased risk of prescribed medication overdose at point of discharge and led to increase in returning straight to substance misuse services. This meant that service users received medication quicker and the right dose and on discharge ensured reduced risk. The prescribing of Naloxone at discharge is yet to be assessed, but the risk of an overdose within seven days is well-documented and Naloxone is key in reversing this trend. This change in practice can be replicated in any mental health setting and has increased access to services for those using substances. Originality/value Is original no other services have substance workers or joint clinics across the UK. First inpatient unit to welcome patients back post-discharge to attend groups.

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