Pamela Inglis

Ten top tips for effectively involving people with a learning disability in research

Purpose – Historically, people with learning disabilities have been the subjects of research, rather than true participants or contributors. Common approaches used to inform people with learning disabilities about research include simplifying information sheets and reading out the information. Literature to date suggests that little is known about what people with learning disabilities understand about research. This paper aims to address this issue.Design/methodology/approach – A total of seven men and ten staff members were invited to become co‐researchers with two academic researchers from Northumbria University, over 20 months. Lessons learned can now be used to: educate other adults; show how it can be helpful; and how it can make a difference in the lives of people with learning disabilities. This study used a facilitated collaborative action research approach involving participants becoming researchers in their own right, enabling collaborative discussions, and using multiple ways of engaging with,...

The impact of research governance in the United Kingdom on research involving a national survey.

PURPOSE The purpose of this paper is to examine the impact that research governance processes in the National Health Service (NHS) are having on the conduct of research that involves a national survey and to point to ways that existing processes may develop to facilitate such research. DESIGN/METHODOLOGY/APPROACH The paper describes the experiences of a research team of seeking approval in 357 NHS organisations to carry out a national postal survey to investigate specialist services and specialist staffing for older people in England in the wake of recent policy developments. Through reflection on this experience, the team propose approaches for the development of existing research governance processes. The national survey was the first stage of the study, which was followed by a detailed investigation of the development of specialist service provision for older people in six case study sites across England. The national survey aimed to map specialist service provision for older people by identifying the range of service models, agency and professional involvements, and nature of the case load in statutory services (health and social care), independent and voluntary sector organisations. FINDINGS Of the 357 NHS organisations approached for approval to carry out the survey within the organisation, this was achieved only in 247 organisations over 12 months. Many organisations were facilitative of the process; however, protracted and extensive approval processes in others led to long delays and redesigning of the research that was commissioned by the Department of Health. ORIGINALITY/VALUE The paper is of value in that it highlights processes and practices that hinder research and builds on those that work well.

Participatory research with men with learning disability: informed consent

Purpose – The purpose of this paper is: to add to current understandings of how people with learning disability make informed choices in relation to participation in research; and to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research.Design/methodology/approach – A participatory/collaborative approach, designed to engage participants in both developing processes for data generation and participating in the analysis of that data, was employed.Findings – The complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. Participation in the research approach by people with learning disabilities enabled the generation of new understandings.Research limitations/implications – The small sample size means the collaborative, recursive approach, whilst researched in depth, has not been wi...

Making our own decisions: researching the process of ‘being informed’ with people with learning difficulties

Historically people with learning difficulties1 have been either included in research without their consent or excluded from research that affects their treatment and care. Over the last 20 years, however, it has been recognised that to exclude the voice of people with learning difficulties (and other so called vulnerable groups) in research that reflects their lived experiences challenges our notion of ethical practice. Cognitive ability has traditionally been one of the key factors in determining ability to consent. This paper identifies, through work with a group of men with learning difficulties, the impact of different ways of presenting information to prospective participants on their ability to understand key issues in relation to participation in research and hence their ability to give informed consent2.

De-escalation: The evidence, policy and practice

Purpose – The management of violence and aggression is an important aspect of any service in the NHS and has been rightly tackled as a whole organisational approach. De-escalation is one such aspect of the organisation approach relating foremost to the safety of people and as such is a central part of relational security, personal safety and the therapeutic relationship. Design/methodology/approach – The paper explores the evidence and policies around de-escalation. Findings – The paper recommends that a randomised-controlled trial be designed, comparing different de-escalation techniques to establish an evidence base for this routine practice. Research limitations/implications – The paper is limited to discussing de-escalation as an approach and the policy that directs it, and does not consider individual theories on aggression and management. It makes recommendations for policy, research and practice. Practical implications – There is a lack of high-quality evidence around de-escalation policy and principles which staff may believe is evidence-based practice because training is often mandatory. This obviously impacts upon the patient experience and aspects of safety. The paper is valuable to practitioners working in secure environments, or with offenders that may require management of violence and aggression. Originality/value – There are many policies and guidelines from the government and from professional bodies that seems to have tailored off since 2005 (Muralidharan and Fenton, 2006; UKCC, 2002). Forensic staff are constrained by such guidance which is further complicated by debates concerning care/coercion and forensic environments, some of which is alluded to here.

Reinterpreting learning difficulty: a professional and personal challenge?

I want to explore in this article the ways in which people with a learning difficulty are constructed in a number of ways as disabled, as limited, as being special, and so on. Constructions can also be utilised for different purposes – to ensure that they have effective levels of support and to elevate the status of people with a learning difficulty. Positive constructs may articulate an ‘accentuation of the positive’ as Goodley and Armstrong prescribed. However, whilst I agree with this sentiment, one echoed in Swain and French’s important formulation of an affirmative model of disability, and one that I have also espoused, professionally I also feel that my experience of working with people with learning difficulties makes me suspicious of generalised statements about people, even those deemed positive. This may be especially true in a period of financial rationalisation, where such constructs may seem inevitable in the fight for effective support for people with a learning difficulty.

Specialist services for older people: issues of negative and positive ageism

This paper reports findings of a study in 2004 of the development of specialist services for older people in the National Health Service (NHS) in England, as recommended in the Department of Health’s National Service Framework for Older People (NSF-OP). The study was funded by the Department of Health as part of a programme of research to explore the Framework’s implementation. Information was collected through a questionnaire survey about the nature of specialist developments at three levels of the NHS: strategic health authorities (SHAs), provider Trusts, and service units. This produced an overview of developments and a frame from which to select detailed case studies. Analysis of the survey data showed that there were variations in the way that the NSF-OP was being interpreted and implemented. In particular, there was inconsistency in the interpretation of the NSF-OP’s anti-ageism standard ; some concluded that the strategy discouraged services exclusively for older people, others that it encouraged dedicated provision for them. The tension between creating ageblind and age-defined services was played out in the context of existing service structures, which had been shaped over decades by many local and national influences. These conceptual and historical factors need to be taken into account if services are to change, as developments are shaped by ‘ bottom-up ’ local processes as well as ‘ top-down ’ policy initiatives. In particular, the tension inherent in the NSF-OP between negative and positive ageism, and its varied interpretations at local levels needs to be taken into account when evaluating progress in implementation.

Men with learning difficulties doing research: challenging views of learning difficulties

Abstract This paper explores the views of men with learning difficulties living in a secure environment. Reflecting findings from a doctoral thesis based upon a research project where the participants looked at the processes and concepts of research, the dialogues within the study were analysed using critical discourse analysis. Thesis aims relevant here include investigating given ‘truths’ about the positives of having a learning disability. The men are not only categorised as having a learning difficulty, but also have the added stigma of being offenders, and commonly having mental health issues which expose them to the worst of myths surrounding learning difficulty. Despite this, the findings suggest that the men are very positive about their lives – reporting that they have many attributes and talents – and view having a learning difficulty as an advantage at times. This affirms Foucauldian ideas on the way that dominant knowledge may be challenged.