Categories
Journal of Adult Protection, The

informing the protection of people with learning disabilities from abuse

Evidencing good practice in adult protection: informing the protection of people with learning disabilities from abuse

Northway, Ruth

abstract

The importance and challenges in providing a good practice evidence base for adult protection are outlined. The literature search, review and mapping exercise that formed part of the Abuse of Adults with Learning Disabilities: Policy, Practice and Educational Implications in Wales research study is detailed. The article presents examples from this evidence mapping exercise and considers the importance of adult protection research to the future development of policy and practice.

key words

good practice adult protection learning disabilities abuse policy practice

The challenge of evidencing good practice

The growing field of adult protection deserves to have high quality research and theoretical underpinning to inform its policy development and practice. Policy makers and practitioners should feel confident that their activities are the most appropriate for the circumstances and that they are well informed. Unfortunately adult protection policy and practice, to date, has not been developed from a strong and substantive research basis. There are several reasons why this is the case and these need to be considered in order to understand the context in which the field of adult protection has developed.

First, adult protection does not have a history of research interest. The vast majority of adult protection research was conducted from the late f 98Os onwards at the same time as the momentum began for policy and practice initiatives. Adult protection spans so many areas of health and social care activity that there was clearly earlier research that had relevance to adult protection (for example, research into physical restraint or sexuality). However, this dispersed evidence was not pulled together in any cohesive way to provide a historical context of adult protection research.

The lack of visibility of adult protection amongst the academic community reflects the fact that much adult protection research has its origins in the difficulties, dilemmas and observations of practitioners. Co-authoring of adult protection papers between practitioners and academics appears more common-place than in many other areas. In many ways this is a positive facet of adult protection research and one that can be maximised upon. However, the lack of academic ‘research communities’ with a common interest in aspects of adult protection has contributed to the lack of historical grounding of the field.

Second, adult protection research has tended to focus on relatively small-scale studies, undertaken across small areas and with a narrow focus (for example, sexual assaults amongst people with challenging behaviour in one local authority area). The irony is that to receive substantial research funding researchers need to justify the extent and nature of the abuse problem. Yet without larger scale research studies the prevalence and incidence issues are still being grappled with. The problem with these smaller studies is that they are often not widely known about or there is a failure to extrapolate lessons from them for other populations or areas. In particular, there is a lack of dissemination of research output in this area beyond national boundaries. For example, a trawl through the UK adult protection literature uncovers few references to the adult protection training activity that exists in parts of the USA (Abrams et al, 1984; Miltenberger, 1999).

Third, the consideration of adult protection as an umbrella term to cover the protection of all vulnerable adults from abuse is relatively new. Indeed the term vulnerable adult itself only became popular in the 1990s. Our recent research found that the majority of adult protection policies that covered all vulnerable adults were developed between 1998-2001 (Northway et al, 2004). Previously, aspects of adult protection were found within either the client groups or service settings categories. For example, a body of evidence exists related to adult protection issues for older adults under the heading ‘elder abuse’, or research into the problems of long-term care institutions. These divisions are not surprising as they represent the divisions that have existed across services. Yet, as with small scale studies, the problem of divisive research is that awareness of studies outside a distinct area is minimal and attempts are not made to consider what lessons can be learnt in other contexts.

The exception to this lack of extrapolation has occurred with research into child protection. It has been acknowledged for several years that as the ‘forefather’ of adult protection there are likely to be lessons that can be carried from the experience of child protection across to the adult domain (Brown & Stein, 1998; White et al, 2003). This is evident at different stages of the investigative process from the conducting of joint police/ social services investigations through to the provision of special measures for vulnerable witnesses giving evidence in court. Equally vocal are those who urge caution on the use of child protection to provide a template for good practice in adult protection (Williams, 2002). Indeed, the inquiries that have resulted from failures in the child protection system (eg The Victoria Climbiè Inquiry, Home Office, 2003) suggest that a wholesale duplicating of this system could have detrimental effects for vulnerable adults.

Ultimately, vulnerable adults are not children and they bring their own unique challenges to the task of how best to protect them. It seems likely, as with most things, that the most sensible position is a balance between an acknowledgement of similarities and differences between child and adult protection.

The reasons behind the lack of a definitive body of adult protection literature in no way diminish the need for such a resource. It is likely that within this fast moving field this resource will become available over the next 10 to 15 years. Yet, it is at the current time of rapid movement in both policy development and practice initiatives that this resource could be utilised. This paper reports on an attempt to collate the evidence for good practice within the context of a wider project into the abuse of people with learning disabilities (Northway et al, 2004). By itself this research cannot redress the absence of a collation of international resources that inform adult protection. Nevertheless, what it has highlighted is common themes, examples of good practice or recommendations for practice, and the extent and nature of research that can inform adult protection.

Conducting the search and review

In 2002 the Unit for Development in Intellectual Disabilities (UDID) at the University of Glamorgan received funding from the Wales Office for Research and Development (WORD), part of the Welsh Assembly Government. This funding was for a two-year research project entitled ‘Abuse of Adults with Learning Disabilities: Policy, Practice and Educational Implications in Wales’. This project sought to examine the extent to which good practice in preventing, identifying and responding to abuse of people with learning disabilities was evident within Wales. The first stage of this project was to identify the benchmarks of good practice against which practice and policy activity could be measured. It is this activity, which was undertaken to identify good practice, that resulted in a literature search and review.

The diversity and disparity of literature with relevance to adult protection (discussed above) necessitated a ‘broad-sweep’ approach to the initial literature search both in terms of search process and content. The search process involved electronic searching of databases that span medical, nursing and social science subject areas (for example, CINAHL, Medline and ASSIA). In addition, references cited in collected articles were collected if relevant. Searches were conducted without date restrictions although more recent sources were given precedence in the review. The origin of sources was also not restricted as it was believed that evidence for good practice could emerge from any country. Search terms used were kept broad both to ensure that all sources were identified and to account for international variations. For example, the terms of preference in the UK learning disability’ or learning difficulty’ have different interpretations in the USA where the terms ‘mental retardation’ or ‘developmental disabilities’ are more commonplace.

The subject of how to define abuse is contentious and is a source of academic debate in itself. Therefore, many search terms were used for the different facets of abuse (physical, sexual, psychological, financial, material, neglect, exploitation, emotional, verbal, mistreatment, institutional, chemical, medication, restraint, bullying, oppression, aggression, violence, discrimination, human rights). In addition, supplementary terms were used which were perceived to have strong links to the adult protection area (rights, advocacy, empowerment, crime, offending, victims, survivors, witnesses, police, assault, protection, identification, prevention, response, management, law, policy, training, whistle blowing, and inquiries).

The literature review did not include ‘grey literature’, the numerous policy or guidance documents or legislation that has relevance to adult protection (for example, Achieving Best Evidence, Home Office, 2002; National Service Framework for Older People, Department of Health, 2001).

Articles were read by a researcher working in the field of adult protection and, in cases where articles were particularly involved, consistency was checked by a second reviewer reading the article. Reviewers sought to identify two main aspects to research papers: the identification of key concerns (the problem) and examples or recommendations of good practice (the solution). These were then grouped into common themes that arise repeatedly in the adult protection literature.

Structure of the review

The structure of the review evolved from the prevalence of certain recurrent issues in the literature. These issues were grouped into broad themes that together can be used to catalogue the diversity of literature that has relevance to adult protection. The first theme relates to aspects of prevention and protection. This area is very broad and is the subject of policy discussion/comment papers, empirical studies as well as discussion pieces on practice issues. Although it could be expected that the focus would be on the avoidance of abuse BEFORE it happens, many articles address prevention and protection as a result of abuse investigations, service level inquiries, or the raising of general concerns. This means that these sources frequently share a ‘what went wrong and what can be learnt’ perspective.

The second theme covers all aspects of abuse reporting. This area receives a great deal of attention as it is the first stage in an abuse investigation (ie when an incident or suspected incident becomes the matter of a formal investigation). If incidents or suspicions are not reported abuse can continue unchecked and vulnerable adults remain at risk. Reporting is also important as it requires clarity and consistency in order that potential evidence is preserved, a police inquiry is not compromised and that a chance of justice or redress is ensured. The procedures for reporting are usually clearly defined; however the literature on reporting is less clear-cut. Reporting appears to raise many practical, moral and ethical challenges, which has led to many opinion pieces being written that explore these.

The third theme covers literature on joint investigations. These are the collaborative inquiries of police and social services, who act as the lead agency for adult protection (in England and Wales). As with reporting, although a clear process is laid out in policy documents, the issue of joint investigations raises many practical and ethical challenges.

The fourth theme relates to justice issues. The current reality that people with learning disabilities often do not achieve redress following abuse has complex causes although recent policy initiatives have been dedicated to improving access to justice (Home Office, 1998; Home Office, 2002). Literature explores the issues involved in achieving justice, the extent to which these initiatives help and their limitations. What makes this area particularly challenging is that it involves engaging with agencies outside the health and social care domains. For example, papers written in collaboration with the police or members of the criminal justice system. Different policy frameworks, methods of practice, language and culture make this area of collaborative work a subject of much debate in the literature.

The fifth theme covers aspects of aftercare and monitoring. This theme spans post-abuse issues for the victims and perpetrators of abuse as well as service-level issues regarding the auditing of abuse incidents and the collation of monitoring data. In this regard monitoring goes full circle back to becoming a future abuse prevention issue. Issues that seemed to be important but were not covered by these main themes were added to a miscellaneous category.

Summary of the review

What is immediately apparent when reviewing the adult protection literature is that there is a lack of ‘mapping’ across from identified problems to potential solutions. Many papers highlight key concerns or make recommendations but few stand alone in detailing the nature of concerns, why they matter and then give detail to their proposed solutions. While this could be indicative of the infancy of the research area it requires effort on the part of the casual enquirer who hopes to gain an overview of the key concerns and good practice examples.

In cataloguing the collected sources a system of adult protection keywords were used. This provides a shorthand method for retrieving research of relevance and is an indicator of the attention paid in the literature to different aspects of adult protection (see Table 1). Two points need to be made about the interpretation of these figures. Firstly, not all articles that have a keyword assigned to them necessarily refer to the keyword verbatim. The concept may be assigned another name in the article or may be eluded to but not named. For example, lack of access to basic rights and choices within a long-stay institution would generally be viewed as a form of human rights abuse. secondly the review did not include all papers that made reference to a subject but rather those that had a clear relevance to the subject of the wider project, Abuse of People with Learning Disabilities. So, for example there is a substantial body of literature on the subject of elder abuse (especially originating in the USA); however only selections are used here.

The detailed analysis of key concerns and good practice can be found in Northway et al (2004). Table 2 highlights examples of key concerns and good practice from each of the six thematic areas. What is interesting is that extensive mapping has to take place from the identified problem to the proposed solution.

The development of evidence to inform policy and practice

The focus on certain aspects of adult protection to the exclusion of others appears to reflect trends in practice. For example, the relatively recent appearance of articles covering financial abuse (for example, Bond et al, 1999; Manthorpe & Bradley, 1998) mirrors the appearance of this form of abuse in definitions within policies. Some gaps do exist in the literature that can leave areas of adult protection lacking an evidence base for practice. For example, the challenge of ensuring that a policy is implemented in such a way as to significantly impact upon practice remains largely un-addressed.

Some of the limitations of applying research output to practice have already been discussed. However, perhaps the most significant obstacle was the need for research results or well-informed opinion to be translated into the language’ of policy makers or practitioners. This is most likely to be achieved through a promotion of the collaborative research/practice initiatives. This way the adult protection research agenda can be closely aligned to the current challenges faced by policy makers and practitioners.

Researchers can inform adult protection not only by looking forward and making recommendations for policy and practice, they can also add to the debate lessons from the past that can inform what is done today. Reports into the inquiries of abuse (for example, Buckinghamshire County Council, 1998; Committee of Inquiry, 1969; Committee of Inquiry into Normansfield Hospital, 1978) and other sources detailing abusive regimes (for example, Tsiantis et al, 2000) provide rich sources of data that have relevance today. Another important contribution researchers can make is ensuring that new initiatives undergo systematic evaluation. Applying scientific rigour to the assessment of the impact of a new development, for example an adult protection training programme, enables the ‘active ingredients’ of such a programme to be identified and to be replicated in other contexts.

Conclusion

Providing an evidence base for health and social care practice is a requirement of modern service provision. The new field of adult protection is some way off from a definitive guide to good practice. However, the pace of policy development coupled with the embracing of a broad sweep of research evidence presents opportunities for good practice to be identified, reported and acted upon. Collaborative working between all stakeholders and including researchers is key to ensuring that this evidence base continues to grow and is given the priority deserving of protecting vulnerable adults.

References

Abrams HA, Nuehring E & Zuckerman M (1984) Preventing Abuse and Neglect A Staff Training Curriculum for Facilities Serving Developmental!)/ Disabled Persons. Miami Shores, Florida: Barry University

Action on Elder Abuse (1999) Where’s the Harm. Elder abuse or Not? London: Action on Elder Abuse.

Ahern K (2002) The beliefs of nurses who were involved in a whistleblowing event. Journal of Advanced Nursing 38 (3) 303-309.

Alien D & Harris] (2000) Abuse by any other name: a critique of some current approaches to behaviour management. Mental Health Care 31 (6) 188-189.

Bailey A & Barr O (2000) Police policies on the investigation of sexual crimes committed against adults who have a learning disability. Journal of Learning Disutilities 4 (2) 129-139.

Baladerian NJ (1997) Recognising abuse and neglect in people with severe cognitive and/ or communication impairments. Journal of Elder Abuse and Neglect 9 (2) 93-104.

Bond JB, Cuddy R, Drxon GL, Duncan KA & Smith DL (1999) The financial abuse of mentally incompetent older adults: a Canadian study Journal of Elder Abuse and Neglect 11 (4) 23-28.

Boniface J & Fraser G (1994) Supporting a survivor: Lessons to be learned. In: Harris J & Craft A (Eds) People with Learning Disabilities at Risk of Physical or Sexual Abuse. Kidderminster: BILD.

Boniface J & Boniface I (1992) VOICE. Mental Handicap Bulletin 86 8.

Brammer A (1999) Whistle-blowing. Tizard Learning Liability Review 4 (3) 23-25.

Brown H, Egan-Sage E, Barry G & McKay C (1996) Towards Better Interviewing: A Handbook for Police Officers and Social Workers on the Sexual Abuse of Adults with Learning Disabilities. Brighton: Pavilion.

Brown H & Keating F (1998) We’re doing it already., adult protection in mental health services. Journal of Psychiatrie and Mental Health Nursing 5 273-280.

Brown H & Stein J (1997) Sexual Abuse Perpetrated by Men with Intellectual Disabilities: a Comparative Study Journal of Intellectual Disability Research 41 (3) 215-224.

Brown H & Stein J (1998) Implementing Adult Protection Policies in Kent and East Sussex. Journal of Social Policy 27 (3) 371-396.

Brownsey D (2001) Nurses and their right to whistleblow AORN (Association of penOperative Registered Nurses) Journal 73 (3) 693-697.

Buckinghamshire County Council (1998) Independent Longcare Inquiry. Buckingham Buckinghamshire County Council.

Carlisle D (1995) Criminal negligence. Nursing Times 91 (36) 20-21.

Chenoweth L (1996) Violence and women with disabilities. Violence Against Women 2 (4) 391-411.

Clare ICH & Gudjonsson GH (1993) Interrogative suggestibility, confabulation and acquiescence in people with mild learning disabilities (mental handicap): Implications for reliability during police interrogations. British Journal of Clinical Psychology 32 295-301.

Collins M (2002) In safe hands: Progress in Wales. Journal of Aault Protection 4 (4) 42-43.

Committee of Inquiry (1969) Report of the Committee of Inquiry into Allegations of ill-treatment of Patients and Other irregularities at the Ely Hospital, Cardiff. Cmd 3975. London: HMSO.

Committee of Inquiry into Normansfield Hospital (1978) Report of the Committee of Inquiry into Normansfield Hospital. Cmd 7357. London: HMSO.

Conway RNF (1994) Abuse and intellectual disability: A potential link or an inescapable reality. Australia and New Zealand journal of Developmental Disutilities 19 (3) 165-171.

Cooke LB (2003) Treating the sequelae of abuse in adults with learning disabilities. British Journal of Developmental Disabilities 49 (96) 23-28.

Cooke P & Davies G (2001) Achieving best evidence from witnesses with learning disabilities: New guidance. British Journal of Learning Disabilities 29 84-87.

Department of Health (2000) No secrets: Guidance on Developing and Implementing Multi-agency Policies and Procedures to Protect Vulnerable Adults from Abuse. London: The Stationery Office.

Department of Health (2001) National Service Frameworkfor Older People. London: The Stationery Office.

Harper G, Hopkmson P & McAfee JG (2002) Protective behaviours: a useful approach in working with people with learning disabilities. British Journal of Learning Disabilities 30 (4)149-152.

Home Office (1998) Speaking up for Justice. Report of the Interdepartmental Working Group on the Treatment of Vulnerable or Intimidated Witnesses in the Criminal Justice System. London: The Stationery Office

Home Office (2002) AchievingBestEvidencein Criminal Proceedings – Guidance for Vulnerable or Intimidated Witnesses including Children. London: The Stationery Office.

Home Office (2003) The Victoria Climbie Inquiry. Norwich: HMSO.

Hunt G (1995) Whistleblowingin the Health Service: Accountability, Law and Professional Practice. London: Arnold.

Joyce TA (2003) An audit of investigations into allegations of abuse involving adults with intellectual disability Journal of Intellectual Disability Research 47 (8) 606-616.

Kebbell MR, Hatton C, Johnson SD & O’Kelly CME (2001) People with learning disabilities as witnesses in court: What questions should lawyers ask? British Journal of Learning Disabilities 29 98-102.

Keilty J & Connelly G (2001) Making a statement: An exploratory study of barriers facing women with an intellectual disability when making a statement about sexual assault to police. Disability & Society 16 (2) 273-291.

Kitson D & Livingstone J (1998) The Day we Found Her Crying…. Chesterfield: ARC.

Manthorpe J & Bradley G (1998) Under protection and over protection: Managing the risk of financial abuse. Breakthrough 1 (1) 35-43

McPherson C (1990) Concerns around the gaps in legislation re the assault and sexual assault of people with disabilities. Victims of Violence Report 1 (2) 40-42.

Milne R & Bull R (2001) Interviewing witnesses with learning disabilities for legal purposes. British Journal of Learning Disabilities 29 93-97.

Miltenberger RG, Roberts JA, Ellingson S, Galensky T, Rapp JT, Long ES & Lumley VA (1999) Training and generalization of sexual abuse prevention skills for women with mental retardation. Journal of Applied Behavior Analysis 32 (3) 385-388.

National Assembly for Wales (2000) In Safe Hands. Protection of Vulnerable Adults in Wales. Cardiff: NafW

Northway R, Davies R, Jenkins R, Mansell I & Fairbairn G (2004) Abuse of People with Learning Disabilities: An Examination of Policy, Practice and Educational Implications in Wales. Pontypridd: School of Care Sciences, University of Glamorgan.

O’Callaghan AC, Murphy G & Clare ICH (2003) The impact of abuse on men and women with severe learning disabilities and their families. British Journal of Learning Disabilities 31 (4) 175-180.

ParrishA& MarkwickA (1998) Equity and access to health care for women with learning disabilities. British Journal of Nursing 7 (2) 92-96.

Pillemer K & Hudson B (1993) A model abuse prevention program for nursing assistants. The Gercntologist 33 (1) 128-132.

Pring J (2003) Silent Victims: The Continuing Failure to Protect Society’s Most Vulnerable ana The Longcare Scandal. London: Gibson Square.

Pritchard J (2001) Neglect: Not grasping the nettle and hiding behind choice. In: Pritchard J (Ed) Good Practice with Vulnerable Adults. London: Jessica Kings ley

Quinn AB (2001) Communication, consent and the duty to care. Clinical Risk 2 (5) 147-148.

Ryan R, Salbenblatt J, Schiappacasse J & MaIy B (2001) Physician unwitting participation in abuse and neglect of persons with developmental disabilities. Community Mental Healthjoumal 37 (6) 499-509.

Sharp H (2001) Steps towards justice for people with learning disabilities as victims of crime: the important role for the police. British Journal of Learning Disabilities 29 88-92.

Sobsey D (1994) Sexual abuse of individuals with intellectual disability In: Craft A (Ed) Practice Issues in Sexuality and Learning Disabilities. London: Routledge.

SteinJ & Brown H (1995) All in this together’: an evaluation of joint training on the abuse of adults with learning disabilities. Health and Social Care in the Community 3 (4) 205-214.

Thornton C (1996) A Focus Group Inquiry into the Perceptions of Primary Health Care Teams and the Provision of Health Care for Adults with a Learning Disability Living in the Community Journal o/Aovanced Nursing 23 (6) 1168-1176.

Tsiantis J, Diareme SP & Kolaitis G (2000) The Leros PIKPA Asylum Deinstitutionalization and Rehabilitation Project: A follow-up study on care staff fears and attitudes. Journal of teaming Disabilities 4 (4)281-292.

Voice UK (2000) No More Abuse. Derby: Voice UK.

Ward L (1999) No Empowerment, No Comment. Community Care 3 June: 26-27.

White C, Holland E, Marsland D & Oakes P (2003) The identification of environments and cultures that promote the abuse of people with intellectual disabilities: a review of the literature. Journal of Applied Research in Intellectual Disabilities 16 (1) 1-9.

Wilgosh L (1990) Sexual assault and abuse of people with disabilities: Parents’ concerns. Developmental Disabilities Bulletin 18 (2) 44-50.

Williams C (1995) Invisible Victims. Crime and Abuse Against People with Learning Difficulties. London: Jessica Kings ley

Williams J (2002) Public law protection of vulnerable adults: the debate continues, so does the abuse. Journal of Social Work 2(3)293-316.

Wilson C, Seaman L & NettlebeckT (1996) Vulnerability to criminal exploitation: influence of interpersonal competence differences among people with mental retardation. Journal of Intellectual Disability Research 40 (1) 8-16.

Professor Ruth Northway

Head of Unit for Development in Intellectual Disabilities (UDID)

Dr Rachel Davies

Research Fellow

Robert Jenkins

Principal Lecturer

Ian Mansell

Principal Lecturer

School of Care Sdences, University of Glamorgan

Correspondence address

Professor Ruth Northway

Head of UDID

School of Care Sciences

University of Glamorgan

Pontypridd

CF37IDL

Email: rnorthwa@glam.ac.uk

Copyright Pavilion Publishing (Brighton) Ltd. Aug 2005

Provided by ProQuest Information and Learning Company. All rights Reserved