Submitted for the Degree Of

An exploration of how the variety of nursing roles in services for adults with learning disabilities may impact on maintaining professional boundaries

Naomi Jane Page Submitted for the Degree of Doctor of Psychology (Clinical Psychology)

School of Psychology Faculty of Health and Medical Sciences University of Surrey Guildford, Surrey United Kingdom

January 2017

Statement of Originality This thesis and the work to which it refers are the results of my own efforts. Any ideas, data, images, or text resulting from the work of others (whether published or unpublished) are fully identified as such within the work and attributed to their originator in the text. This thesis has not been submitted in whole or in part for any other academic degree or professional qualification. Name: Naomi Jane Page

of 181 Overview

The present research portfolio includes a literature review and empirical paper. The literature review focused specifically on the factors associated with the sexual abuse of people with learning disabilities in residential settings (Harris, 2013). However, it became evident that there is a lack of distinction between types of abuse in the literature. An up to date literature review which looked at the more global term ‘abuse’ rather than specifically focusing on sexual abuse was therefore carried out. This review highlighted that existing research into this area often focuses on characteristics of the victim, perpetrator and settings in which the abuse takes place. This review also highlighted important gaps in the literature and areas which warranted further exploration, this included findings which suggested that nurses in learning disabilities services occupy multiple roles

(Golding, 2001). The lack of consideration of the impact of managing multiple roles on staffs’ management of boundaries therefore informed the subsequent research proposal.

Interpretative Phenomenological Analysis was used to explore the experiences of five nurses working in residential services for people with learning disabilities. Participants appeared to lack a clear conceptualisation of boundaries instead focusing more on their relationships with service users, likening these to personal relationships. Additionally, findings indicated that instead of multiple roles participants tended to focus on the challenges of balancing client needs within service limitations and the lack of appropriate guidance and supervision to do this. Service level changes such as supervision were recommended to support staff in managing the pressures and complexity of their roles.

of 181 Acknowledgements I would like to thank my supervisors, Dr Kate Gleeson, Dr Nan Holmes and Dr Karen Dodd for all their help, guidance and support in completing this research.

I would like to thank the participants who gave up their valuable time, as without them this research would not have been possible.

of 181 Finally, I would like to thank my husband, family and friends for their incredible and unwavering support throughout my training and their continued encouragement and belief in me, I could not have done it without you.

Table of Contents

of 181 Part One: Major Research Project Literature Review

(Year 1, 2013)

Factors Associated with the Sexual Abuse of Adults with Learning Disabilities by Staff in Service Settings

Word Count: 7,807

Abstract Background: Adults with learning disabilities (AWLD) are at an increased risk of sexual abuse in a number of settings (Sobsey & Mansell, 1997). Abuse as perpetrated by staff was largely attributed to the social isolation of institutions which allowed abuse to flourish unchallenged (Sobsey, 1994).

A subsequent move to community integrated facilities has not prevented sexual abuse (Turk and

Brown, 1992) suggesting a need to explore factors associated with the abuse of AWLD by staff in service settings with a view to minimising future risk. Page 5 of 181 Methods: Relevant publications were identified through computerised searches of the following databases: PsycInfo, PsychArticles, MedLine, Criminal Justice Abstracts, British Nursing Index

(BNI), Applied Social Sciences Index and Abstracts (ASSIA), Psychology and Behavioural

Sciences Collection. Manual and fingertip searches were also completed. Date, language, publication type and peer reviewed journal restrictions were applied throughout. Identified articles were screened for eligibility in line with inclusion/exclusion criteria.

Results: Thirteen studies were identified including three qualitative; eight quantitative studies and two articles which lacked methodological process.

Conclusions: Preliminary evidence suggests that despite a wealth of information on the sexual vulnerability of AWLD there is a lack of literature identifying and investigating it as perpetrated by staff in service settings. An over emphasis is placed on individual factors in accounting for vulnerability, resulting in a lack of qualitative studies examining staff and client attitudes and constructs. This review acknowledges that due to communication and understanding difficulties in clients and the sensitivity of this area for staff these might be difficult to access.

of 181 Introduction Adults with Learning Disabilities (AWLD) are characterised by a significantly reduced or impaired level of intellectual functioning, ability to understand or learn new and complex information and impaired social functioning (Diagnostic & Statistical Manual of mental disorders, DSM-IV;

American Psychiatric Association, 2000). It has been reported that as a population, AWLD are more vulnerable to sexual abuse than the non-disabled population (Sobsey & Mansell, 1997), with prevalence rates of sexual abuse of AWLD ranging between 25%-50% (Horner-Johnson & Drum,

2006). The large variation of prevalence seen in this population has been attributed in part, to the use of varying definitions of abuse in this area (McCarthy & Thompson, 1997).

The term sexual abuse has been widely debated in learning disability literature as it is suggested to reflect a vulnerability seen in those without an adult status and to mask and minimise what in other

‘adult’ contexts would be called ‘sexual assault’ or ‘rape’ (Williams, 1995). These views may be reflected in the ways in which abuse is responded to with the reliability of the individual’s disclosure being questioned and a lack of definitive proof resulting in as many as 75% of offences

of 181 not being reported to the authorities (Sobsey & Varnhagen, 1989). Additional communication difficulties in this population result in trauma responses being misinterpreted as challenging behaviour (Sequeria, Howlin and Hollins, 2003) and appropriate investigations are therefore not instigated. The experience of a long history of repeated failures such as these, may lead AWLD to have a lack of trust in their own abilities and in the support of other people to act in the face of abusive treatment (Sin, Hedges, Cook, Mguni, & Comber, 2009). An underreporting of abuse in this population may be reflected in the large prevalence variance and suggest any figures identified may only be representative of the tip of the iceberg.

A widely accepted and used definition of sexual abuse was provided by Brown and Turk (1992).

They define sexual abuse as ‘where sexual acts are performed on or with somebody who is unwilling or unable to consent to those acts’. In order to provide consent an individual is required to have a general knowledge about sex. Many AWLD have not received sex education (Cambridge and Mellan, 2000) and therefore have a limited understanding as to sexual relationships (Charman and Clare, 1992). This lack of knowledge impedes an individual’s ability to provide informed consent to engage in a sexual activity and increase vulnerability to victimisation. The very definition of a LD encompassing as it does significant limitations in intellectual functioning and adaptive behaviour, means that AWLD have difficulty coping independently and need to rely on friends, family members or paid carers for support. A relationship in which one party is relied upon creates an unequal distribution of power between individuals, which is considered to be a primary factor in all forms of interpersonal violence and abuse (Roher, 1997). Adults with LD may therefore not refuse or may unwillingly engage in sexual activity due to an inherent imbalance of power or dependency in their relationship with the perpetrator (McCarthy and Thompson, 1997).

of 181 Adults with learning disabilities, until recently, were viewed as the vulnerable, eternal child in need of protection (Ward, Bosek & Trimble, 2010). Historically this was addressed with the use of large institutions where the main emphasis was on care and segregation (Lindsey, 2002). Society’s paternalistic attitude reduced the control and power AWLD had over their lives, which reinforced dependency, over compliance and the institutionalisation of many individuals (Sobsey, 1994;

Wardhaugh & Wilding, 1993). Preventing AWLD from being able to make decisions and take risks resulted in limited social expertise and experience which in turn increased social vulnerability to abuse (Ward, Bosek & Trimble, 2010). With attention drawn to the systematic abuse in large institutions there was public outcry. The social segregation of institutions was blamed for allowing abuse to flourish unchallenged (Sobsey, 1994) and as a result a move towards community integrated living was undertaken.

The move towards community integrated living was hoped to foster independence and social inclusion for AWLD however, many people continue to experience limited social opportunities and a lack of control over care arrangements (Northway, 1997). Community integrated living has focused on the use of group homes and supported living but private hospital facilities and units have continued to be used for people with specific needs (Mackenzie-Davies & Mansell, 2007). Abuse in community integrated environments has continued to occur (Turk and Brown, 1992) and scandals, the most recent of these being Winterbourne View private hospital continue to draw public attention

(Department of Health, 2012). This suggests that factors associated with the sexual abuse of AWLD go beyond the size or function of the institution and that these factors need to be identified and their interactions taken into account.

With research suggesting that AWLD experience a range of similar psychopathologies to the non- disabled population following sexual abuse (Sequeira, Howlin & Hollins, 2003) in line with a post-

of 181 traumatic stress disorder criteria (O’Callaghan, Murphy and Clare, 2003) the social importance of further developing our understanding of this area with a view to preventing future abuses is highlighted. This literature aims to investigate the factors associated with the sexual abuse of

AWLD by staff in service settings.

Method

Search Strategy A literature search in peer reviewed Nursing, Psychiatry, Social Care and Psychology journals was conducted. The computerised search was performed using Applied Social Sciences

Index (ASSIA), Medline, British Nursing Index (BNI), PsychInfo, Cumulative Index to Nursing and Allied Health (CINAHL), Criminal Justice Abstracts, PsychArcticles, Psychology and

Behavioural Sciences Collection. The search was restricted by English only language, date range from 1990-present and by the journal which was required to be peer reviewed. Articles were included based on their own definitions of both learning disability and sexual abuse.

Searches of the literature were conducted using the following terms: Sexual* abuse OR sexual* exploit*OR sexual* manipulat*OR sexual* OR sexual* inappropriate OR neglect* OR inappropriate OR exploit* OR manipulat*OR abuse OR slippery slope OR boundar* OR boundary crossing* OR boundary violation* OR exploit* OR manipulate* OR mistreat*OR victim*OR vulnerab* OR relationship* AND

Inpatient OR caregiver* OR nursing home OR worker* OR institution* OR resident* OR secure

OR hospital OR patient OR supported living OR group home OR care*OR staff*OR support*Or day centre OR unit OR day service OR care*AND

of 181 Learning disab* OR learning difficult* OR mental* handicap* OR mental* retard* OR mental* impair* OR cognitive* impair* OR cognitive* retard* OR intellectual* disab* OR developmental* disab*.

Articles gathered from these searches along with a number of supervisor recommended articles references were fingertip searched for additional relevant papers.

Exclusion and Inclusion Criteria Inclusion Criteria:

 Articles were included if they discussed, reviewed or assessed participants who had a

recognised learning disability and who were accessing service settings including

residential and day services.

 Where participants or respondents were staff they were required to work in some

capacity with adults with a learning disability in a service setting.

 Articles were required to mention sexual abuse, knowledge of sexual abuse, attitudes

towards sexual abuse or risks associated with sexual abuse in AWLD as perpetrated

by members of staff in service settings.

 Articles were required to have been carried out in either the United Kingdom or the

United States of America.

Exclusion Criteria:

 Articles were excluded if they were book chapters or dissertations.

 Articles were excluded if they were in relation to children with learning disabilities,

or staff that worked with children with learning disabilities/difficulties as it was

considered the factors associated with the abuse of children may differ from the

of 181 AWLD. In articles were participants were of varying ages, these were excluded if

they did not clearly separate the findings between child and adult samples.

 Articles were excluded from the review if they were solely concerning other

vulnerable adult populations including people with physical disabilities, older

people, and people with dementia or traumatic head injury. Where articles reported

on a number of vulnerable populations these were excluded if findings were not

clearly identifiable as being related to the learning disability group.

 Articles were excluded if they were set in community, field environments or the

family home as it was considered the dynamics of abuse in these settings may differ

to those of service related abuse. Studies which used mixed settings were excluded if

they did not clearly discriminate findings between the different environments.

 As it was considered that factors associated with sexual abuse may differ from

factors associated with other abuse types articles were excluded if they discussed

other or unspecified types of abuse and did not discriminate findings in relation to

sexual abuse.

Results All searches resulted in the identification of 185 articles. After screening the literature cited therein for relevant publications 13 studies matching the inclusion and exclusion criteria were identified. A breakdown of article numbers identified at each stage of the process are presented in a PRISMA flow diagram in figure 1 (Moher, Liberati, Tetzlaff & Altman, 2009). The 13 articles comprised of three qualitative studies including one case study and two focus groups/semi structured interviews.

Of the eight quantitative studies identified four were investigating staff attitudes of the sexual abuse of AWLD. A further three studies were investigating sexual abuse knowledge or the effectiveness

of 181 of sexual abuse prevention training with AWLD from service settings. One paper investigated staff and AWLD reactions to physical contact. The remaining two articles identified lacked methodological process.

With the aim of providing a holistic view of factors associated with the abuse of AWLD in service settings identified by this literature review, these will be split into client factors, staff factors and setting factors.

Figure 1:PRISMA flow Diagram (Moher et al., 2009) showing article numbers for identified steps of literature review search process.

of 181 Client Factors Table 1 shows the studies identified in the review and the client factors identified therein.

Participants Sampling Design Assessment Findings/Factors Methodological Methodological Strategy identified Strengths Limitations

Brown, Hunt and N=94 Participants Questionnaire assessments. Questionnaire information not Staff suggested: Administering the No information is provided as Staff from health attended a group included. Some question Client communication questionnaire in the context of to how questions were service districts providing an items are provided throughout difficulties as a main reason the group increased the devised, all items working across a introduction to a the course of the article. for sexual abuse. likelihood of returns. administered or the reliability number of settings Sexual Abuse AWLD would not recognise Data were gathered from a and validity of the including domiciliary Project. sexual abuse as inappropriate. range of employees. questionnaire. and residential services A lack of sexual education ill Staff may have felt for AWLD. prepared clients to understand uncomfortable giving honest abuse. responses and real life case AWLD may be fearful of the examples in front of perpetrator or lack colleagues. This may have assertiveness which may act increased concerns around as a barrier to disclosure. confidentiality. AWLD may experience No data is provided as to the prolonged abuse and therefore overall response rate. view it as part of everyday Administering questionnaire life. in the context of a special interest group could have resulted in selection bias.

N=7 Participants were Evaluation of a behavioural skills training programme Sexual abuse prevention skills Post training participants Use of in situ assessment has Ethical considerations of Women with mild to referred to the using pre and post assessment of sexual abuse prevention target behaviours were became skilled at saying “no”. increased ecological validity. exposing vulnerable women moderate LD living in study by their case skills. assessed with self-report, role During in situ assessments Use of two observers to score to sexual solicitation and the Finstrom, Jostad group homes or managers play and in situ assessment. once the perpetrator had left responses in assessment long term impact this could supported living Skills were assessed in the room and therefore the conditions provided inter- have had on the participant. apartments. response to randomly drawn threat had been neutralised rater reliability. Three women dropped out, sexual or safe scenarios at participants were less likely to Case managers and one because she became upset base line, during training and follow through with the participants completed side with the in situ assessment. at follow up one and three remaining steps of informing effects of training Reliability and validity data is months later. a member of staff what questionnaires. not provided on the side Participants and their case happened. effects questionnaires used. managers completed pre and Participants were less likely post side effects of training to find a member of staff and questionnaires. inform them following a sexual lure when high levels of response effort were required such as disengaging from a preferred task or if the staff member was in another part of the building. Following a sexual lure and finding a member of staff participants were unlikely to interrupt them if they identified the member of staff as busy i.e. if they were on the phone. N=1 An investigation Case study. Information with regards to It was difficult to determine Gathered detailed information Difficult to generalise from 17 year old young man into the possibility ‘normal’ behaviour and whether individual had been on individual’s previous findings as limited sample. with severe LD, who of residential reaction to stress was sexually abused due to his behaviour, sexualised The author postulated that the was unable to verbally sexual abuse was gathered from the family. A level of LD and behaviour and reactions to individual’s behavioural communicate. initiated following list of behaviours indicative communication difficulties. stress allowing for a changes might have been a He had been in a his return home of post-traumatic stress comparison between pre and reaction to change in his residential facility for a when a marked disorder were devised and post placement behaviour. environment. The six week respite and unusual recorded at hourly intervals observations were carried out period. He usually increase in throughout the day. They when the individual was resided with his sexually were also recorded at night. staying in a further hospital family. inappropriate Sexually inappropriate facility, it was therefore behaviour was behaviours were recorded. difficult to hypothesise noticed. The young man completed whether these were linked to several individual sessions the residential experience and which aimed to explore his any trauma that may have experiences during the occurred there or whether placement. they were due to a further change in his environment. Method does not specify how behavioural disturbances at night were recorded. Page 14 of 181 Participants Sampling Design Assessment Findings/Factors Methodological Methodological Strategy identified Strengths Limitations N=6 Participants were Evaluation of a behavioural skills training programme Sexual abuse prevention skills Post training participants Increased ecological validity Ethical concerns of using a Women with mild to recruited through using pre and post assessment of sexual abuse prevention target behaviours were showed an increase in sexual through the use of naturalistic naturalistic probe of an Long, Rapp and moderate level of LD a local community skills. assessed with self-report, role abuse knowledge and probes. unknown member of staff living in group homes. agency which play and in naturalistic prevention skills. Two observers scored all administering a sexual probe. provided observations. Participants In the follow-up participants responses in each assessment Side effects of training were residential knowledge of appropriate did not respond as trained to condition; reliability for all not measured with the services to actions to engage in with staff naturalistic probes. probes was 100%. participants. AWLD. were assessed pre and one Generalisation from training Case managers completed a Reliability and validity data is week post training. to real life situations was not pre and post training not provided on the side Case managers completed observed. questionnaire examining the effects questionnaires used. side effects of training possible side effects of questionnaires pre and post training. training. McCarthy and - - Unspecified - AWLD may fail to report Paper is based on ideas sexual abuse as they may see developed through experience it as an inevitable price for working in the area of their continuing in a sexuality and sexual abuse of relationship which they value. people in LD settings. Lack of sex education for No description as to study AWLD places them at an design or method used. increased vulnerability of Lack of evidence for claims. abuse. Mainly focuses on client-to- Socially isolated individuals client sexual abuse. are at greater risk of sexual abuse as there is limited opportunity to discuss appropriateness of interaction or disclose abuse. O’Callaghan and N=120 Participants were Questionnaire assessment Questionnaire developed by AWLD had limited AWLD were asked these No reliability and validity 60 AWLD from day recruited from a the researchers assessing knowledge about the law with questions in interview form. information provided for the and residential settings range of LD and understanding of sexual regards to sexual offences, Non-disabled participants questionnaire and a control group of non-disabled consent, abuses and the law age of consent completed a questionnaire Different data gathering 60 non-disabled people settings. Control surrounding these. Half AWLD knew there were containing same items. method with control sample from comprehensive and study group some special laws to protect could influence results. schools. were matched on them from staff sexual abuse Unclear how participants gender. All but were not sure what these were recruited from services participants were were. above16 years old. Higher IQ significantly correlated with increased scores (amount of knowledge on area). Owen, Griffiths, N=32 Voluntary Questionnaire assessment using likert scale format. Questionnaire was developed Consumers were positively Provides details of Participants had been Feldman, Sales and 14 members of staff participation with participant population inclined to face-to-face questionnaire development interviewed previously for the and 18 consumers through thematic analysis of hugging and kissing. These and content. development of the from community semi structured interviews. were perceived to be more Both genders were questionnaire potentially residential services for Questionnaire assessed acceptable if they have known represented in consumer leading to demand AWLD. consumers and staff the member of staff for a long sample. characteristics. judgements of time. Data was excluded as it was Does not clearly describe appropriateness of social Some consumers reported questionable whether sampling strategy and behaviours towards either not caring or accepting consumer participants participant recruitment. him/herself by different social approaches regardless understood. individuals. of the nature of their relationship with the person approaching them. Thompson, Clare N=5 Unspecified Pilot study using structured interviews to look at Unspecified People with severe - Female staff not Female support boundaries between male client and female staff member. impairments are more likely representative of those who workers working with to experience touch from staff abuse. men with LD. members as they are Does not include sampling perceived as asexual. strategy. Does not include structured interview questions, reliability or validity information.

N=5 Unspecified Pilot study using structured interviews to look Unspecified Staff appraise - Female Clare and Female support at boundaries between male client and female appropriateness of representative. Does not workers working staff member. forms of touching include sampling with men with including kissing, strategy. LD. holding hands, hugging Does not include and sitting on laps by interview questions, making a judgement reliability or validity about which men are formation. potentially sexual.

of 181 Lack of Generalization of Sexual Abuse Prevention Skills

Lumley (et al., 1998) assessed the success of a sexual abuse prevention programme with five women with mild level of LD living in residential facilities. Target behaviours were described as a) verbally refusing the request, b) leaving the situation and reporting the incident to a trusted adult.

Participants were scored on their completion of these steps in response to sexual abuse lures randomly selected from a pool of scenarios. Following training the participants showed an increase in sexual abuse knowledge and prevention skills but did not respond as trained when presented with a follow up naturalistic probe, where a sexual lure was presented by an unknown member of staff. The use of naturalistic observations could be considered to have increased ecological validity but this raises ethical concerns as it could have been traumatic as the participants were unaware they were being assessed. The suggested difficulty of the generalisation of abuse prevention skills could place AWLD at an increased risk of sexual abuse as despite training they may be unable to defend themselves against abuse.

Lack of Sexuality Knowledge and Knowledge of Sexual Abuse

O’Callaghan and Murphy (2007) demonstrated that AWLD had less sexual knowledge than non-disabled young people, with over half of AWLD displaying no awareness of laws to protect them from sexual relationships with professionals. A failure of the authors to adequately describe their recruitment process makes it difficult eliminate any biases that may have

of 181 occurred as a result of the selection methods used. Results suggest that

AWLD rarely receive adequate sexuality education and where they do there is a lack of emphasis placed on understanding sexual abuse and the laws in place to protect them. If AWLD are not provided with the adequate knowledge and information this places them at a distinct disadvantage in becoming victims of sexual abuse.

Brown (et al., 1994) assessed LD staff knowledge of the risks, patterns of sexual abuse, and guidance and support mechanisms with the use of an unspecified questionnaire. In keeping with O’Callaghan and Murphy

(2007), staff suggested a failure to recognise an incident as sexually abusive was a primary concern in vulnerability of AWLD. Staff who completed the survey were recruited from two heath service districts who had volunteered to work on policy issues around sexual abuse. This service level drive in addition to completing the questionnaire in a group may have put pressure on staff and resulted in answers that were not indicative of the participants’ true thoughts.

McCarthy and Thompson’s (1996) commentary supports these findings and suggests that AWLD have limited knowledge to enable them to identify sexual abuse which may place them at an increased vulnerability of sexual abuse (O’Callaghan and Murphy, 2007; Brown et al., 1994). It is of note that the factors identified in this paper are based upon “ideas developed by

of 181 the authors during the past 6 years work on the issue of sexuality and sexual abuse in a wide variety of learning disability settings”. It fails to describe a method and so consequently appears mainly anecdotally based.

Egemo-Helm (et al., 2007) assessed the sexual abuse prevention skills of seven women with mild to moderate level of LD who were residing in service settings using Lumley (et al’s., 1998) target behaviour criteria. As with Lumley (et al., 1998) this study shows good ecological validity through the use of in situ training and assessments nevertheless this still could have been traumatising, which was confirmed by the drop-out of three participants who found this aspect too distressing. Post training the participants demonstrated an increased ability to say ‘no’ but once the threat was neutralised, i.e. the member of staff left the room the participant did not follow through with subsequent steps which involved leaving the situation and locating and disclosing to a member of staff. In particular an increased amount of response effort required by the participant was identified as a barrier to disclosure. In situations where the participant was engrossed in a task, the nearest member of staff was not located in the immediate proximity or if staff were perceived as unavailable i.e. on the phone, participants were less likely to disclose. It is of concern if AWLD are not informing staff in the wake of sexual lures. It could be speculated that the amount of response effort required may be linked a lack of understanding of the severity of the incident.

of 181 Social Isolation

McCarthy and Thompson (1996) suggested anecdotally that the social isolation of AWLD places them at greater risk of sexual abuse due to limited opportunity for discovery or disclosure.

Lack of or Reduced Communication Abilities

Fenwick (1991) completed a case study of a 17 year old male with sever learning disabilities who was suspected of being the victim of sexual abuse whilst he had been in respite residential care. Through behavioural observation the authors were able to conclude the individual was expressing behaviour consistent with a traumatic experience but were unable to determine whether the young man had been sexually abuse or not. This was attributed in part to his communication and expressive difficulties. By its nature this study uses a very limited sample and it is difficult to generalise from its findings to other people, particularly to those with differing communicative abilities. Lack of, or reduced communication abilities increases the difficulty in establishing whether someone has been the victim of sexual abuse (Brown at al., 1994) as it limits opportunity for discovery and can therefore be suggested to be a factor associated with the failure of on-going sexual abuse being disclosed.

of 181 Level of disability, functioning and sexuality

Thomspon (et al., 1997) interviewed female support staff and suggested that the more disabled a client is the more likely they were to be perceived as asexual. Because of this staff described feeling more comfortable in crossing boundaries and engaging in physical contact with these individuals.

Staff felt less able to engage in physical contact with those perceived as more sexualised. These findings suggest a link between the level of disability and perceived sexuality as a risk factor for the abuse of AWLD.

The authors fail to provide details as to sampling strategy, interview schedule and analysis; as a result findings from this study must be interpreted with caution. O’Callaghan and Murphy (2007) identified that an increased level of IQ was correlated with an increased amount of knowledge on sexuality, sexual abuse and protective laws. Similarly to Thompson (et al., 1997) these findings could suggest that increased knowledge could be related to increased sexuality which may act as a protective factor against the boundary crossings of members of staff who do not wish for their inappropriate actions to be misinterpreted.

Powerlessness, Dependence and Acceptance

Lumley (et al., 1998) and Egemo-Helm (et al., 2007) both use an unknown member of staff as a naturalistic/in situ assessments of sexual prevention skills in AWLD. This fails to take into account the value placed on the relationship or the perceived authority of the professional party has on the power differential that exist within caring relationships. For example

of 181 AWLD may be more likely to tolerate abuse when they have increased reliance on or place more value in a relationship. Similarly these individuals may show increased tolerance to abuse when they perceive the abuser as in a position of authority.

Owen (et al., 2000) assessed staff and service user judgements of the appropriateness of various touching behaviours by different individuals.

Results showed that AWLD were positively inclined to view face-to-face hugging and kissing as acceptable with a known member of staff. Some

AWLD reported either not caring or accepting social approaches regardless of the nature of their relationship with the person approaching them. This could support the notion that AWLD are vulnerable to the potential advances of known support staff as they may fail to identify these actions as exploitative. It may also suggest that the abuse is an accepted part of the caregiving relationship and that a lack of assertiveness enables abuse to continue (Brown et al., 1994). This suggestion was supported by anecdotal evidence from McCarthy and Thompson (1996) and through the use of staff questionnaires by Brown (et al., 1994). This evidence is suggestive of the influence of the unequal power dynamic and relationship expectations in

AWLD which may increase the risk of victimisation.

Staff Factors Table 2 shows the studies identified in the review and the staff factors identified therein.

of 181 Authors/Year Participants Sampling Strategy Design Assessment Findings/Factors identified Methodological Strengths Methodological Limitations Staff Factors

Allington, 1992 N=107 Staff working in residential and day facilities for AWLD. Returns from postal survey. Questionnaire assessments. Questions provided in appendices. 14% of staff reported not knowing what to do in a sexual abuse situation. One third of staff would like teaching on sexual abuse. Large sample. No questionnaire validity or reliability information provided. Sample represented one third of questionnaires sent. Bowman, Scotti and Morris, 2010 N= 124 Direct care staff or supervisors from day centres or residential group home settings for AWLD. Participants were recruited through attendance in voluntary sexual abuse awareness training. Pre and post training questionnaire assessments. Participants completed a variety of demographic information questions, the Sexual Abuse Attitudes and Knowledge Questionnaire (SAAKQ) and the Global Perceptions Scale (GPS). Post training: Staff showed significant increase in sexual abuse awareness however, scores remained low. Staff rated themselves as only having an ‘average amount of knowledge’ of sexual abuse in AWLD. There was no significant change post training with regards to staff attitudes about AWLD as measured by the GPS. Large sample. Participants were mainly young females and therefore not representative of population most likely to abuse. Study did not report GPS pre or post test scores; it is therefore difficult to make assumptions about staff general attitudes towards AWLD. Study experienced participant drop out before post workshop measures could be completed. Brown, Hunt and Stein, 1994 N=94 Staff from health service districts working across a number of settings including domiciliary and residential services for AWLD. Participants attended a group providing an introduction to a Sexual Abuse Project. Questionnaire assessments. Questionnaire information not included. Some questions are provided throughout the course of the article. 70% of staff could remember almost nothing of their employee’s sexuality guidelines. Staff respondents identified irregular or temporary staff as more likely to abuse AWLD. Administering the questionnaire in the context of the group increased the likelihood of returns. Data were gathered from a range of employees. Large sample.

Staff may have felt uncomfortable giving honest responses and real life case examples in front of colleagues. This may have increased concerns around confidentiality. No data is provided as to the overall response rate. Administering questionnaire in the context of a special interest group could have resulted in selection bias. Crossmaker, 1991 - - Discussion/Commentary - Staff may rationalise boundaries between care giving and sexual abuse. A staff view of residents as objects, dehumanises and increases victimisation. Paper references the works of others to support ideas. Does not describe method. Hames, 1996

N=105 Staff working across 3 LD day centre sites. Opportunity sample of staff who attended sexual abuse training. Staff completed a questionnaire pre and post.

The questionnaire measured staff attitudes to sexual abuse and the vulnerability of AWLD. Staff showed a lack of realistic understanding of the vulnerabilities and potential risks of sexual abuse in AWLD before training particularly in relation to risk posed by known individuals. Training failed to increase perceived risk posed by known individuals. Questionnaires surveyed a range of direct care professionals. Opportunity sample may not be representative of all staff. Social pressure of completing questionnaire as part of training and group may have impacted on results. The proportion of staff who attended the training and the response rate for completing the questionnaire is not included. No information provided on the authors, design, validity or reliability of the questionnaire used. Not all participants completed the questionnaire before and after training. A description of the management and analysis of subject attrition is not provided. Jenkins, Davies and Northway, 2008 N=70 LD direct care staff Participants that had an interest in the protection of AWLD from different types of abuse were invited to participate in the study. A stratified sampling technique was used. Focus groups on staff attitudes towards practice issues. Thematic analysis of transcripts was undertaken. Staff expressed ambivalence and uncertainty as to best course of action and use of procedures in abuse situation The thresholds at which people decide to take action to abuse varies between staff. Stratified sampling technique. Transcript coding was reviewed by research team to ensure coding consistency. Selection bias, all participants had expressed interest in the prevention of abuse of AWLD. The paper does not discuss response rates. McCarthy and Thompson, 1996 - - Discussion/Commentary - Sexual abuse training for staff is short and there is little follow up. - Paper is based on ideas developed through experience working in the area of sexuality and sexual abuse of AW LD settings. No evidence. Mainly focuses on client-to-client sexual abuse. Owen, Griffiths, Feldman, Sales and Richards, 2000

N=32 14 members of staff and 18 consumers from community residential services for AWLD. Voluntary participation Questionnaire assessment using likert scale format. Questionnaire was developed with participant population through thematic analysis of semi structured interviews. Questionnaire assessed consumers and staff judgements of appropriateness of social behaviours towards him/herself by different individuals. Staff considered face-to-face hugging acceptable when there had been a long association with the consumer. Half of the staff interviewed did not mind being patted on the leg by a consumer. Provides details of questionnaire development and content. Participants were representative of both genders of staff.

Participants had been interviewed previously for the development of the questionnaire potentially leading to demand characteristics. Does not clearly describe sampling strategy and participant recruitment.

Thompson, Clare and Brown, 1997 N=5 Female support workers working with men with LD. Unspecified Pilot study using structured interviews to look at boundaries between male client and female staff member. Unspecified Staff appraise appropriateness of forms of touching including kissing, holding hands, hugging and sitting on laps by making a judgement about which men are potentially sexual. - Female sample not representative. Does not include sampling strategy. Does not include interview questions, reliability or validity formation. Staff Belief That ‘It Doesn’t Happen Here’

Brown (et al., 1994) found regular staff identified unknown agency staff at a higher risk of institutional abuse, suggesting a disbelief in the risk posed by known staff. This was similarly seen by Hames (1996) who assessed the knowledge pre and post sexual abuse training at three day centres for

AWLD. There was an increase in the perceptions of risk posed by other service users and strangers but the perception of risk posed by individuals known to the client did not increase despite the training presenting evidence to suggest this. Findings suggest that staff find it difficult to accept that abuse can happen where they work and can be perpetrated by people they know. A factor associated with sexual abuse in service settings may be lack of staff realism, denial and difficulty in accepting that it happens. No validity or reliability information was provided for the questionnaires used in this study, interpretations need to be made in light of this.

Inadequacy of Staff Training

Bowman (et al, 2010) assessed the attitudes of LD staff following a sexual abuse awareness workshop using the Sexual Abuse Attitude and Knowledge

Questionnaire (SAAKQ) and the Global Perceptions Scale (GPS). The voluntary training consisted of a half a day workshop. Results showed a significant increase in sexual abuse knowledge and awareness post training but that scores remained low with an average of 60% correct. This finding was in keeping with staff self-rating as having an average amount of knowledge of the area. This could suggest that despite a half days training on sexual abuse staff may still be lacking in the skills and confidence to identify and respond to the sexual abuse. Bowman (et al 2010) recruited participants by their volunteering to attend a sexual abuse awareness workshop; the sample is therefore subject to selection bias. It is not unreasonable to assume that those who volunteer for a workshop do so because they have limited existing knowledge of an area. Lower knowledge base pre training could offer one possible explanation for the lack of correct sexual abuse awareness scores post training. The study also experienced participant drop out, it is therefore difficult to make assumptions about characteristics of this group as a separate analysis was not carried out on the pre workshop data. Other research similarly identified that the majority of staff can remember almost nothing of employee sexuality guidelines (Brown et al., 1994) and would like additional teaching on the area (Allington,

1992). Staff reaction to abuse was determined by the perceived seriousness of the abuse as staff expressed ambivalence and uncertainty as to the recommended procedures (Jenkins et al., 2008). Failure to identify and respond appropriately may place AWLD at an increased risk of victimisation and may therefore be a factor associated with abuse by staff in service settings.

Boundaries, the Acceptance of Physical Contact and Appraisal of Sexuality

Owen (et al., 2000) identified that staff considered face-to-face hugging and certain physical contact such as leg patting by clients as acceptable when there had been a long association. Thompson (et al., 1997) suggested that staff appraise the appropriateness of forms of touching including kissing, holding hands, hugging and sitting on client laps based on the perceived sexuality of the AWLD. Those perceived by staff as the most asexual are deemed the least threatening which leads to an increased acceptability of physical contact. These results suggests that that staff in this population are more accepting of a range of physical contact which in other contexts may be deemed inappropriate, and that a decision as to the appropriateness of physical contact is based on the staff perception of their sexuality.

Crossmaker (1991) similarly suggested that the boundaries between caring and sexual abuse may become rationalised by staff that may slip between one and the other. It is of note that this article is not based on an experimental design and takes a discussion/commentary format and so suggest should be interpreted with caution.

General Attitudes of Staff towards AWLD

Bowman (et al., 2010) made suggestion of a link between general attitudes towards AWLD held by staff and sexual abuse awareness and reported no significant overall attitude changes as measured by the GPS. The authors suggest that this could reflect a need for more training to addressing staff attitudes towards AWLD in addition to staff awareness and knowledge of sexual abuse. The study describes the “erroneous beliefs” about AWLD but fails to state what these may be. Scores pre or post workshop were not provided for the GPS it is therefore difficult to make assumptions about the relationship between sexual abuse awareness and general attitudes towards

AWLD or what these attitudes might be. Crossmaker (1991) suggested that staff views of AWLD as objects dehumanises them and places them at an increased risk of sexual abuse. However, as this article is a discussion/commentary there is a lack of evidence to support this claim.

Se tting Factors

Table 3 shows the studies identified in the review and the setting factors identified therein.

Authors/Year Participants Sampling Strategy Design Assessment Findings/Factors identified Methodological Strengths Methodological Limitations Setting Factors

Crossmaker, 1991 - - Discussion/Commentary - Institutions impinge on people’s privacy and dignity which may contribute to the occurrence of sexual abuse. Paper references the works of others to support ideas. Does not describe method. Jenkins, Davies and Northway, 2008 N=70 LD direct care staff Participants that had an interest in the protection of AWLD from different types of abuse were invited to participate in the study. A stratified sampling technique was used. Focus groups on staff attitudes towards practice issues. Thematic analysis of transcripts was undertaken. Attitudes towards abuse can go unchallenged when organisations become isolated.

Stratified sampling technique. Transcripts coding was reviewed by research team to ensure coding consistency. Selection bias, all participants had expressed interest in the prevention of abuse of AWLD. The paper does not discuss response rates. McCarthy and Thompson, 1996 - - Discussion/Commentary - The bigger the service the more chance of an abuser working there. Large dehumanising settings provide the space for abuse dynamics to flourish.

- Paper is based on ideas developed through experience working in the area of sexuality and sexual abuse of people in LD settings. No evidence. Mainly focuses on client-to-client sexual abuse. Thompson, Clare and Brown, 1997 N=5 Female support workers working with men with LD. Unspecified Pilot study using structured interviews to look at boundaries between male client and female staff member. Unspecified Sexual abuse training is viewed as a special interest area. .

- Female staff not representative of those who abuse. Does not include sampling strategy. More women went of sexual abuse training than men Large and Dehumanising and Isolated Setting

McCarthy and Thompson (1996) suggest that the larger the service the more likely an abuser is to be employed there statistically and that these large dehumanising, socially isolated settings provide limited opportunity for outside parties to identify a problem and provide a space for abuse to flourish (Jenkins et al, 2008). Crossmaker (1991) suggests that a lack privacy and dignity may increase an AWLD vulnerability to sexual abuse by effecting staff perception of clients, however; these claims are not supported with clear evidence.

Unclear Sexual Abuse Guidelines

A number of studies have highlighted the uncertainty and confusion staff feel towards sexual abuse guidelines in their place of work (Brown et al.,

1994; Jenkins et al., 2008) suggesting that this could be a setting factor for the sexual abuse of AWLD.

Discussion

During the literature search and review process it became clear that numerous articles do not differentiate the factors specified by this review, and that abuse types (Marsland, Oakes & White, 2007; Bollman & Davis,

2009; Marachetti & McCartney, 1990; Singer, 1996), adults with different vulnerabilities (Ramsey-Klawsnik et al., 2007), adults and children with LD

(Elvik, Berkowitz, Nicholas, Lipman & Inkelis, 1990), various settings

(Thornberry & Olson, 2005; Peckham, 2007) and participant role (Buchanan

& Wilkins, 1991; Hogg, Campbell, Cullen & Hudson, 2001) tend not to be discussed separately. The stringent search and inclusion/exclusion criteria used in this literature review could therefore have been a contributing factor to the limited number of studies identified. The lack of research in this area could also be due to the difficulties in obtaining specific data on resident maltreatment (Machetti and McCartney, 1990) and may also be indicative of a sensitive topic.

Despite sexual abuse by staff identified as a problem (Joyce & Oakes, 2004) and prevalence studies in the area of sexual abuse of AWLD (Beail &

Warden, 1995) this literature review was unable to identify any that examined the prevalence of sexual abuse towards AWLD as perpetrated by staff in service settings. Future research in this area may benefit from the completion of a prevalence study to establish the size of the problem. This may also enable the characteristics of those who access service settings, particularly residential or secure units to be explored.

The majority of studies using staff respondents were pre-post training investigations which used questionnaires to gather data on knowledge and attitudes. The training was attended by mainly women (Bowman et al.,

2010; Thompson et al., 1997) and recruitment was obtained through the use of voluntary and special interest workshops (Hames, 1996; Brown et al.,

1994; Bowman et al., 2010; Jenkins et al,., 2008) which could have resulted in selection and gender biases. Males are suggested to be more likely to be perpetrators of sexual abuses (Marachetti & McCartney, 1990) and as they are underrepresented in these samples this raises concern as to the limited generalizability of these findings. The majority of client studies identified used case studies and pre-post self-protection training designs. As evidence suggests that both men and women with LD are equally likely to be victims of sexual abuse (Dunne & Power, 1990; Buchanan & Wilkins, 1991) the use of small and limited samples, mainly consisting of women again, lacks generalizability. Research using samples with equal gender distribution may provide additional information and perspectives on the abuse of this population.

Most of the literature reviewed fails to adequately describe sampling procedures, reliability and validity scores for questionnaires and assessments. Research in this area is therefore unable to be replicated and lacks scientific rigor. The use of questionnaire, likert scales and scored observation assessments has resulted in predominantly quantitative information. The factors identified in this review had to be interpreted from studies using semi structured interviews, unsubstantiated claims or those investigating alternative questions. This review suggests that there is a lack of qualitative studies examining staff and client attitudes and constructs in this specific area but acknowledges that that these might be difficult to access due to communication and understanding difficulties in clients and the sensitivity of this area for staff .

The majority of factors identified from this review focus on client vulnerability characteristics including lack of protection skills, lack of sexual knowledge, reduced communication and powerlessness. These tend to focus on the individuals vulnerability as a causal link between AWLD and the likelihood of experiencing sexual violence (Fairbairn, Rowley &

Bowen, 1995). However, acknowledging the extent of risk associated with service settings suggests the need for a wider explanation of abuse. The Ecological Model of Abuse (Sobsey, 1991) suggests that abuse is caused by interactions between macrosystems (cultural and social beliefs), exosystems

(communities, institutions and environments) and the microsystem

(interpersonal relationships). This model suggests it is important to take into account environment and cultural beliefs when identifying causes of abuse.

With other populations who reside in institutional facilities there is evidence suggesting that sexual offences against clients or vulnerable people do not occur in isolation and that there is a “slippery slope” of inappropriate behaviours over a period of time culminating in the sexual abuse (Stromm-

Gottfried, 1999). It has been acknowledged in other populations that there is a balancing act between the dual roles of maintaining security and being therapeutic (Sawyer and Prescott, 2010). This is similarly seen in LD staff who are required to shift between the role of being a carer and a professional. Given the intimate nature of care provided in LD residential settings it is possible interactions may become confused or distorted leading to ambiguity around intimacy boundaries (Owen et al., 2000). Due to the care requirement and the physical contact behaviour accepted by staff it may be interesting to investigate staff attitudes to boundary crossings and violations given the increased blurring of boundaries found in AWLD

Moving away from a culture of individual blame to think about contexts and constructs which allow abuse to occur is important in continuing to develop our understanding of why such abuses happen. Therefore research that goes beyond individual psychopathology into the exploration and recognition of cultures and environments may help to explain some of the underlying reasons why staff commit abuse or fail to challenge the abusive practices of others. It would be interesting to examine the staff perception and constructs of AWLD and what relationship their perceptions have on sexual abuse. References

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of 181 Part Two: Major Research Project Empirical Paper

(Year 3, 2015)

An exploration of how the variety of nursing roles in services for adults with

learning disabilities may impact on maintaining professional boundaries

Empirical paper word count: 9996

of 181 Abstract Recent scandals, such as the abuse at Winterbourne View, continue to draw public attention to the issue of the abuse of people with learning disabilities

(Department of Health, 2012). Existing research into this area is often too simplistic, focusing on characteristics of the victim, perpetrator and settings in which the abuse takes place. Nurses in learning disabilities services have been suggested to occupy multiple roles (Golding, 2001); however, there appears to be a lack of consideration given to the impact this has on staff management of boundaries. Interpretative Phenomenological Analysis was used to explore the experiences of five nurses working in residential services for people with learning disabilities. Three superordinate themes were identified: (i) investment and enmeshment of one’s self in the role, (ii) unique setting and population and (iii) staff understanding and management of boundary crossings. Findings indicated that multiple roles, for these participants were irrelevant, and instead concerns around balancing client needs within service limitations and pressures were more salient.

Additionally, participants appeared to lack a clear conceptualisation of boundaries instead focusing more on their relationships with service users and their understanding of what it means to provide good care, likening these to personal relationships. In addition, guidance and supervision was insufficient in meeting staff needs leaving service users vulnerable to abuse.

Service level changes including supervision facilitated by an outside agent, and experiential training to challenge axiomatic thinking may support staff in managing the pressures and complexity of their roles.

Introduction

of 181 Adults with learning disabilities have been found to be at an increased risk of abuse (Sobsey & Mansell, 1997) with reported prevalence rates as high as

53 percent (Sullivan & Knutson, 2000). Staff and services intended to support and safeguard vulnerable people are most often implicated in occurrences of abuse (Beadle-Brown, Mansell, Cambridge, Milne &

Whelton, 2010; Horner-Johnson & Drum 2006; Sobsey, 1988; Sobsey,

1994). Despite the move away from large scale institutions, community based care in smaller hospitals, homes and hostels seem to be just as likely an environment for abuse (Cambridge, 1998; Fyson & Kitson, 2010). With recent scandals, such as the abuse at Winterbourne View, public attention continues to be drawn to this issue (Department of Health, 2012), reigniting the debate about the care of adults with learning disabilities and the prevention of abuse in residential settings.

An up-to-date review of the literature was completed for the purpose of this research. It identified prevalence data along with factors that contributed to abuse, these primarily included: vulnerabilities of the person with a learning disability, staff characteristics and settings factors.

Vulnerabilities of the person with a learning disability

Literature suggests that people with learning disabilities are more likely to be abused than the general population (Horner-Johnson & Drum, 2006).

Research has identified communication difficulties as a risk factor for abuse in those with learning disabilities, suggesting there was a link between the

of 181 level of impairment and risk of abuse (Brown, Hunt & Stein, 1994; Turk &

Brown, 1993). This is in contrast to Marchetti & McCartney’s (1990) finding that those ‘in the upper IQ and adaptive behaviour levels’ were more likely to be victims of abuse in comparison to those with more profound difficulties due to the more serious behavioural difficulties associated with higher functioning residents, which may frustrate and provoke staff leading to increased incidents of abuse.

The majority of the above research used a retrospective design (Marchetti &

McCartney’s, 1990; Turk & Brown, 1993), which relied on abuse information gathered from historic records. It is unclear how included cases were confirmed and due to under- and miss-reporting of incidents of abuse, these hypotheses may not be a true representation and may reflect only our understanding of the ‘tip of the iceberg’ (Turk and Brown, 1993). In contrast Brown et al’s., (1994) questionnaire design with staff lacks clarification of the sampling strategy, resulting in limited methodological robustness.

Whilst data provides an insight into abuse experienced by people with learning disabilities caution needs to be exercised due to potential limitations, including missing data (Cambridge, Beadle-Brown, Milne,

Mansell & Whelton, 2011) resulting from the withdrawal of allegations for fear of the consequences (Joyce, 2003), which can lead to underreporting of incidents. However, even with concerns around methodological robustness of research in this area there exists a consensus in the literature that

of 181 indicates that people with learning disabilities are at a significant risk of abuse (Sullivan & Knutson, 2000) from staff (Horner-Johnson & Drum

2006).

Staff characteristics

Staff and carers were identified as one of the most likely parties to commit abuse (Cambridge, Beadle-Brown, Milne, Mansell & Whelton, 2006).

Despite evidence suggesting a link between increased level of impairment and abuse (Brown et al., 1994; Turk & Brown 1993), research suggests that staff failed to recognise people with learning disabilities as generally more vulnerable and found it hard to define vulnerability (Parley, 2011). This could be in part due to the interpretation of the definitions of abuse provided within policies resulting in different understandings (Collins, 2010).

Jenkins, Davies & Northway (2008) found staff were unsure about how to proceed in abuse situations. By focusing and reporting ‘severe’ abuse only, staff failed to recognise lesser, but still unacceptable forms of abuse. Hames

(1996) similarly identified that staff found it difficult to accept that abuse can happen, suggesting that a lack of acceptance and staff knowledge as to what constitutes vulnerability and abuse may impede staff ability to identify risks and therefore protect the person with learning disabilities.

The majority of the aforementioned research relied on participant self- nomination, which could have led to response biases (Hames 1996; Jenkins et al., 2008; Parley, 2011). Additionally, given the sensitivity of the subject,

of 181 research carried out using questionnaires as part of a training- or focus- groups may have resulted in staff responding in a socially appropriate way

(Hames, 1996; Jenkins et al., 2008). However, as participants expressed uncertainty in terms of practices and policy, it could be suggested that they are responding honestly and therefore demand characteristics may not have had the impact one might expect.

Personality characteristics of staff such as low self-esteem and impulsiveness have been shown to negatively impact on the treatment of people with learning disabilities (Bromley & Emerson, 1995; Jenkins, Rose

& Lovell, 1997). Strand, Benzein, & Saveman (2004) highlighted the frequency with which staff in learning disability settings are themselves victims of violence and the associated increased feelings of powerlessness.

The aforementioned research used questionnaire designs. These relied upon staff members admitting to participating in and/or being a victim of abuse

(Strand et al., 2004). Due to the sensitivity of the area under investigation results may therefore have been influenced by demand characteristics.

Research attempting to identify personality characteristics suggests a leaning towards the concept of a perpetrator of abuse, as a “bad apple”, who deliberately targets and abuses vulnerable people (Manthorpe & Stanley,

1999; Martin, 1984). However, research in social psychology suggests that most people are capable of acting abusively in certain contexts (Zimbardo,

Maslach & Haney, 2000), implying that this notion of a few “bad apples” is

of 181 over simplistic (White et al., 2003) and therefore additional factors, such as setting, need to be considered.

Setting factors

A person with a learning disability is more likely to be abused in a residential setting by someone who is known to them than in the community by a stranger (Beadle-Brown et al., 2010). Research into contributory factors suggests that larger services foster dehumanising attitudes

(McCarthy & Thompson, 1996). Additionally social isolation was suggested to be a factor in abuse by limiting the opportunity for outside parties to identify a problem (Jenkins et al., 2008). However, even with the move away from large scale institutions to community based care in smaller facilities, abuses such as those seen at Winterbourne View private hospital have continued to occur (Cambridge, 1998; Fyson & Kitson, 2010). This suggests that factors associated with abuse of people with learning disabilities goes beyond simply the size or function of the institution.

The Slippery Slope

The model of a “slippery slope” (Simon, 1995) suggests that abuse does not happen in isolation and instead there is a gradual “slippery slope” of deteriorating behaviour between the more subtle boundary crossings (acts which involve stepping out of the usual framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client; Gutheil and Gabbard, 1993). Investigations into the mechanism behind the “slippery slope” phenomena suggests a process

of 181 of ‘gradualistic moral disengagement’, in which individuals rationalise questionable conduct, minimise their personal responsibility, and dehumanise potential victims (Bandura, 1999). This leads to a reduction in ethical practice over a series of gradually increasing misdemeanours (Welsh,

Ordóñez, Snyder & Christian 2015).

This model has been applied to psychotherapeutic (Stromm-Gottfried,

1999), medical (Galletly, 2004) and forensic inpatient populations

(Marquart, Barnhill & Balshaw-Biddle, 2006). The existing literature has focused predominantly on boundary violations and in particular sexual violations, rather than more subtle boundary crossings (Gabbard & Lester,

2002; Simon, 1998). This may be due to the recognition of the harm caused by violations as opposed to crossings (Gutheil & Brodsky, 2008), increasing a sense of obligation to reactively research this area. However, as the model implies the more serious violations are as a result of multiple and increasing boundary crossings, it is both important and appropriate to identify any preceding processes to avoid further escalation.

No research, only speculative literature was identifiable in terms of the application of the “slippery Slope” to people with learning disabilities in residential services (McDonnell, 2011). It is therefore unclear as to what extent the model applies to this population. However, due to the potential for proactive management of abuse this is an important area for consideration.

of 181 Multiplicity of Roles

The practices observed at Winterbourne View (Department of Health, 2012) were easily identifiable as abuse. However, less clear-cut and harder to identify abusive behaviour can occur when interpersonal boundaries between staff and clients become blurred. Sawyer and Prescott’s (2010) research with a mental health population suggested that engaging in multiple roles with a client can have a potentially harmful impact on the client because the therapeutic relationship becomes viewed as a mutual exchange in which the needs of both parties are paramount, thus demonstrating the need to maintain clear and professional boundaries. This may be of particular concern in learning disability services given the theoretical proposition that nursing for adults with learning disabilities requires staff to adopt many different roles including: ‘nurse’ administering medication, a ‘carer’ providing personal care, a ‘cook’ preparing meals, a

‘friend’ engaging in social activities such as going to the cinema, a

‘counsellor’ listening to the client and ‘parent’ or coach responding to and motivating the client (Golding, 2001). Owen et al., (2000) similarly suggest that given the intimate nature of care provided in residential settings and the need to manage multiple roles, it is possible that appropriate boundaries may become confused; however, it is of note that the aforementioned suggestion is only anecdotal and speculative. A recent review identified no literature which addressed the issue of multiple roles of staff in learning disability services and the challenges this may create in terms of the management of boundaries.

of 181 Theoretical Rationale

The existing literature provides a good basis from which to identify some of the factors and characteristics associated with the abuse of people with learning disabilities, however the majority of this research is potentially out of date and lacks methodological clarity. A lack of qualitative studies has resulted in a lack of understanding as to the attitudes of staff and people with learning disabilities in this area and it is therefore suggested that more exploration of the constructs and mechanisms that operate behind abuse needs to take place.

An inductive qualitative methodology is best positioned to develop an idiographic understanding of what these constructs mean to staff within their social reality (Bryman, 1988). Of particular interest is the lack of consideration given to the multiplicity of staff roles and its impact on staff relationships with the people who use residential learning disability services. This is of particular importance given that, as Simon (1995) suggests, there may be a ‘slippery slope’ on which boundary crossings may lead to violations. A better understanding of how staff manage their boundaries with people with learning disabilities is vital to the future development of preventative strategies (Cambridge, 1999).

Aim of the study and research question

The purpose of this study is therefore to provide an in-depth exploration of how boundary crossings are understood and develop within the context of managing multiple roles given the complexity of nursing in residential

of 181 facilities for people with learning disabilities. This research therefore aims to answer the following research question:

How do the variety of nursing roles in services for adults with

learning disabilities impact on maintaining professional boundaries?

Method

Design

This study used in-depth face to face individual interviews within an

Interpretative Phenomenological framework to explore participants’ experiences and understanding of the multiplicity of nursing roles in residential settings for people with learning disabilities and the relationship with boundary crossings.

Following a review of qualitative methodology1, Interpretative

Phenomenological Analysis (IPA) was deemed the most suitable approach for the purpose of this research2.

Sampling and Criteria

Smith, Flowers and Larkin (2009), recommend a sample of between four and ten participants for IPA research carried out as part of a professional doctorate. This study therefore aimed to recruit five participants from a

1 See Appendix 1: Review of Qualitative Methodology

2 See Appendix 2: Interpretative Phenomenological Analysis Suitability Information

of 181 large NHS trust in the South of England (for participant recruitment procedure see Appendix 33).

Within IPA research the emphasis is on obtaining a fairly homogeneous sample through the use of purposive sampling techniques. This produces a more closely defined group for whom the research question is significant

(Smith, Flowers & Larkin, 2009).

The following criteria were used to screen for inclusion in the study:

 Nurses registered with the Nursing and Midwifery Council (NMC)

 Currently working in a residential service for adults with learning

disabilities

 Working a minimum of half time (18.75 hours a week) or more

 With a minimum of 12 months experience working with people with

a learning disability

 Qualified for one year or more

Participants

To protect participants’ anonymity, demographic information is presented for the group rather than on an individual case basis. The sample consisted of one male and four females, ranging between 40-69 years of age. All participants identified as White British, had worked as a registered nurse for

3 See Appendix 3: Participant Recruitment Procedure

of 181 more than 15 years with three of the participants having worked as a registered nurse for more than 25 years. All participants had completed the

Registered Nurse for the Mentally Handicapped (RNMH) qualification and had been working in services for adults with learning disabilities their entire nursing career, with some participants’ experience pre-dating their nursing qualification.

In addition to working in residential care settings for between 10 and 31 years, participants described having worked in a range of services for people with learning disabilities which included: ‘Challenging Behaviour’,

‘Community’, ‘Inpatient’, ‘Autism’ and ‘Respite’ services’. Participants all reported working a variety of hours including day, night shifts and ‘9-5’ hours. All participants were currently acting as managers in a variety of residential settings for people with learning disabilities.

All names used in this paper are pseudonyms and any identifying details have been removed or amended to protect participants’ anonymity.

Procedure and Materials

Upon meeting, participants were initially given a copy of the Participant

Information Sheet4 to read to ensure they had a clear understanding of the project. Once any questions had been answered the Consent Form5 was completed. In addition, participants were required to complete a

4 See Appendix 4: Initial Participant Information Sheet

5 See Appendix 5: Initial Consent Form

of 181 Demographic Questionnaire6. This consisted of nine questions which covered age, gender, ethnicity, the title of the nursing qualification individuals completed and the length of time they had worked in services for adults with learning disabilities.

To explore flexibly and in detail the area of interest, a semi-structured interview, as recommended by Smith & Osborn (2003), was used. In order to develop the interview schedule7 a review of the literature allowed for the identification of key areas which were then used to develop a set of open- ended questions. These were discussed with the researcher’s supervisors, who had experience of working with people with learning disabilities and a newly qualified nurse working in learning disability residential services.

Questions included participants’ understanding of the ‘roles’ they undertook in the care they provided for people with learning disabilities and how they managed the different boundaries between such ‘roles’. In order to manage potential methodological challenges, such as the participant struggling to spontaneously generate stories about their experience, quotes were used to act as a springboard for conversation (see Appendices 88 & 99). Following the interview participants were provided with a Debrief Sheet10 and given the opportunity to ask questions.

6 See Appendix 6: Demographic Questionnaire

7 See Appendix 7: Initial Indicative Interview Schedule

8 See Appendix 8: Quote 1: UKCC (1999)

9 See Appendix 9: Quote 2: Gutheil and Gabbard (1993)

10 See Appendix 10: Debrief Sheet

of 181 Ethical Considerations

Ethical approval was gained from the Faculty of Arts and Human Science

Ethics Committee11, followed by University of Surrey Ethics Committee12.

Concern had been raised by both the University of Surrey Ethics Committee and The Service User and Carer Consultation Group (SUCCG) about participants’ understanding and appreciation of confidentiality given the sensitive nature of the issues under discussion. In order to manage this, the limits of confidentiality including the interviewer’s responsibility to report any issues of concern to the local Safeguarding Board were clearly specified in the Participant Information Sheet and Consent Form.

During the first participant interview issues around disclosure of specific examples arose and safeguarding procedures were subsequently initiated by the researcher. Following this, after consultation with research supervisors, changes were made to the interview schedule13. These included the removal of questions that asked for actual examples of boundary crossings in favour of questions requesting theoretical ones. Active discouragement of specific examples was used in questions and throughout the interview. In addition,

11 See Appendix 11: Trust R&D Letter of Ethical Approval

12 See Appendix 12: University of Surrey Letter of Ethical Approval

13 See Appendix 13: Revised Indicative Interview Schedule

of 181 changes were made to the Participant Information Sheet14 and Consent

Form15 in which the limits of confidentiality and circumstances under which safeguarding procedures may be initiated were made even more explicit and these were further reinforced verbally at the beginning of the interview.

Following changes made to the study materials, revised approval was gained from the Faculty of Arts and Human Science Ethics Committee16 and R&D were informed.

Data Analysis

The analysis consisted of several stage process as set out by Smith, Flowers and Larkin (2009), a detailed description of which can be found in

Appendix 1817. Examples of an extract from a coded participant transcript18, an extract from a table of themes19 and a table of super- and sub-ordinate themes with relevant participant quotes20 can be found in the appendices.

Elliot, Fischer and Rennie (1999) suggest seven methods for checking the credibility of qualitative research which the current research has aimed to address throughout. A detailed explanation of this can be found in Appendix

14 See Appendix 14: Revised Participant Information Sheet

15 See Appendix 15: Revised Consent Form

16 See Appendix 16: Email demonstrating revised ethical approval

17 See Appendix 17: Data Analysis Procedure

18 See Appendix 18: Extract from a coded participant transcript

19 See Appendix 20: Extract from a table of themes

20 See Appendix 20: Table of super- and sub-ordinate themes with participant quotes

of 181 2121. One such method includes a diary which encourages the researcher to

reflect on the process22.

Results Table 1 provides a summary of the super- and subordinate themes which

were identified as most relevant and novel, taking into account the gap in

the existing literature in relation to the issues around the multiplicity of staff

roles in this particular setting and the impact this has on boundary crossings.

Each superordinate theme will be identified along with the subsequent

comprising subordinate themes which will be supported by the use of

representative quotes.

Table 1 Summary of Themes

Superordinate Themes Subordinate Themes Investment and enmeshment of -Enmeshment of one’s self and the role one’s self in the role -We’re close like a family - I know them therefore, I know best Unique setting and population -Pressures of the environment: tasks vs. roles -A different kind of nursing -Communication and vulnerability Staff understanding and -Speaking about the unspoken: the risks, the realisation and the management of boundary crossings benefits - How useful are policies, training and guidelines?

In order to manage space restrictions some quotes were edited to remove

words and utterances such as “erm” that were not crucial to exposing the

meaning. Missing words are graphically represented by ellipses. Square

brackets have been used where the author added words to provide context or

to facilitate flow for the reader.

21 See Appendix 22: Credibility Information

22 See Appendix 23: Reflective Statement

of 181 Investment and enmeshment of one’s self in the role

Participants described a deep emotional attachment to their role as a nurse, and described the role as an extension of themselves. They described an enmeshment between the self and the role that may potentially impact on their ability to make appropriate decisions about their management of boundaries. This perceived emotional investment sometimes appeared to create a sense that staff relationships with the people who use learning disability services were like other non-work, social relationships and that social boundaries instead of professional boundaries applied to their relationships. In addition participants positioned themselves as doing the right thing in the way they manage the boundaries. They perceived that they knew the person best, and that they held their best interests at heart.

Enmeshment of one’s self and the role

All the participants except Sarah reflected on the investment of themselves in their role which extended beyond their professional boundaries. Andrew said ‘you get so familiar, it’s almost not a job’, potentially indicating the merging of the job role with one’s sense of identity. This view point was shared by Mary who said ‘you’ve got some people that just think of it as a job, but there’s many of us that think of it much more’. Given the level of emotional investment participants displayed, it could be suggested that this enmeshment of their role and identity may impact on their ability to make decisions about the appropriateness of their management of boundaries.

of 181 Sarah however presented a more disconnected perspective saying ‘I have a, sort of an operational role… [and] I have a clinical role’.

Sarah goes on to describe the motivations for her clinical involvement from a more detached and less emotionally invested standpoint ‘what you’re looking at is, is why is that person not doing it on their own? You know, where is the deficit that someone needs to step in and support that person to do it’. This contrasts with other participants who described their motivations as the happiness of those they care for, for example Claire said ‘at the end of the day it’s a-, has everybody here had a good day? Have they had a good day? You know, and do people smile? Do people laugh?...It keeps me coming back’.

We’re close like a family

All except Sarah reflected on the merging of the professional and social role and the impact this had on making decisions and managing boundaries. This was demonstrated by Andrew who said ‘sometimes it’s quite difficult because sometimes it’s difficult to stand back…sometimes you get so sort of a, familiar and so relaxed and all that’…I mean it is difficult isn’t it really because, it’s almost sometimes like your family, when you’re residential care, but you’ve got to know somewhere that it’s not your family, you know what I mean, and different rules apply’.

The participants who shared their perception of complexity around disentangling their professional and personal feelings, used constructs that

of 181 imply more intimate relationships such as family and friends to illustrate the depth of their familiarity. This was demonstrated by Mary who said with the closeness you know, maybe I am like a Mother figure to some of them…

I don’t think they, the people don’t see us as nurses. They see us as, as family’. This was similarly described by Anna who added ‘I think it’s hard sometimes when if you’re what I call a touchy feely person you know, I can go up to my friends…And put your arm round them…But it can be deemed not the thing you should do here with the people that you look after…I suppose that is the hardest part is that you have to, do that switch, you know, to who you are as a person, to who I am as a person, to when you’re coming in to work’. These perspectives are in comparison to that of Sarah who outlined a clearly defined professional role within her position, saying

‘You’re working in an environment and you need to be really clear, because as a friend you might make one decision, as a clinician you might make a different decision’.

With staff relationships with the people who use learning disability services being likened to social relationships, some participants made links between the ways in which they may act in their non-work relationships and applied these to their relationships with the people who use their services. This is evident where Mary says ‘sometimes you do feel like a parent because you say, actually, you know, please don’t behave like that’. Claire added ‘I know they’re not children here but I, often feel that, what we do here or…I would be more than happy for, my children to be, treated like that if need be…Not that I’m treating them as children, you know, as I would want my re-, my,

of 181 family to be looked after’. This is suggestive of a link between the boundaries held in their social relationships being inadvertently applied to service-user relationships which may increase the likelihood of challenges in managing appropriate boundaries. In addition some participants demonstrated judging interactions by the standard of care they would wish to receive for themselves, or would want for their loved ones. Anna said

‘What would my expectations be? What would I want? How would I want someone to look after me?’ While Claire said, ‘I would never do anything that I wouldn’t want somebody to do one of my, to do to one of my relatives’.

I know them therefore, I know best

An important aspect of managing boundaries as described by all participants was knowing the person with a learning disability. This knowledge of personal histories and preferences of people with learning disabilities was used as a way of judging the appropriateness of interpersonal behaviour.

This was highlighted by Claire who said ‘I do think I know where the bou-, where the boundaries are, and the boundaries are appropriate to that individual person’. This view was also seen in Sarah’s account ‘each person’s individual, so it’s about how they, they like you to interact, so it’s about different communication styles’. Andrew similarly highlighted the importance of knowing how the person with a learning disability may prefer to interact by saying ‘the behaviour you will, undertake with one client is different from the behaviour you’ll undertake with another’.

of 181 Mary and Andrew were additionally able to reflect on the added complexity of their own individual differences in relation to their personalities and personal preferences. This was illustrated by Mary who said ‘it’s the same like us, that we might get on with some people better than with others and I think it’s the same, for them’ and Andrew who said ‘one of the worst things, people say is, ‘you should treat everybody equally…but you can’t, it’s impossible. You’re bound to be drawn, more to other client than others, you just are, that’s the nature of- you know. Some clients, over the years, you’ll try your best with but you just can’t get on with them, yeah? Some clients, you hit it off instant, ah your friends you know, and all the rest of it’.

Some participants adopted an axiomatic standpoint assuming that knowledge of person inevitably led to knowledge of how they wanted to be treated. Andrew said ‘it’s knowing peoples...you’ve got to look in the person’s mind as well as your own’. This led participants to believe they knew what was best for the person with a learning disability and that their actions were therefore justified, as demonstrated by Claire who described ‘I know the people…somebody may like a-, like I say, and like a rude song, they’ll be getting up in the morning or, if I say, ‘Oh come on a-, lazy devil’ today-, you’ve got to get up and do some work today… I know that person and I know that he likes, a-, yeah-, he’d like me to say, he likes that banter cause he banters back’, She demonstrates that she justifies a particular style of interaction by claiming knowledge of the individual and a particular understanding of their response. Claire went on to describe‘[working with somebody who] loves banter, he loves a bit of banter, so if you said to him,

of 181 and most probably going over a professional boundary actually like, ‘Oh yeah, you silly old sod!’ or something like that…but for somebody else I wouldn’t say that because they wouldn’t understand that or they wouldn’t that or they don’t enjoy that banter’. This suggests that even though Claire thinks that she may be stepping out of her professional boundaries she feels justified in doing so because of her perceived relationship with the person with a learning disability. This was additionally seen in Mary’s interview when she said ‘if you’re going out with someone and they’re quite anxious and that when you’re going out, they will often, you know, put their hand in and want a link your arm or something like that, you know…Is that crossing the boundary?...To me it isn’t’.

Unique setting and population

The perception of professional relationships as social relationships and associated boundaries were often attributed to the unique setting in which they existed, the impact of the pressures of the environment and the many faceted roles that a nurse plays.

Participants noted that the people who use their services were often life-long residents resulting in a particular quality of relationship unlike those that may be found in other more transient nursing settings. Participants suggested that this created a different quality of nurse-patient relationship and with it a perception of different boundaries. Participants identified the importance of communication and how the lack of a voice can leave people vulnerable to abuse. Related to this, participants noted the dilemmas Page 65 of 181 inherent in using physical touch when this may be an individual’s primary mode of communication.

Pressures of the Environment: Tasks vs Roles

A number of participants described the challenges of coping with the multiple pressures in their services, as demonstrated by Claire who said ‘it’s a bit like putting out fires and then but sometimes the bonfires get a little bit bigger and then you feel like you’re struggling to put the bonfires out a little bit’, suggesting an experience of juggling many demands.

This analysis suggests an indiscernible difference between the management of ‘roles’ and ‘tasks’ to be performed, with some participants using these terms interchangeably. The consensus among participants was around the challenges associated with managing the pressures of working in residential settings. This was demonstrated by Claire who said ‘I think [managing boundaries is] more to do with the pressures. I don’t think it’s nothing to do with the chopping and changing of the roles, it might be a case of how many of those roles, you’re being asked to do’. Mary added ‘I think you know, because, you know, you have so many different roles, that you fulfil now that I think it’s a lot easier, for boundaries to get crossed’. This could suggest that the many facets within the role were not conducive to the management of appropriate boundaries.

Participants acknowledged the challenges associated with managing the multiple pressures associated within their role. Andrew described how ‘it’s

of 181 all about tasks and it’s the role- where that role changes from, from being somebody’s friend or mentor to, somebody’s, I don’t know, what’s the word, to that person becoming a task you’ve got to fulfil that’s where things get stressed out really’. This identified that it is when the person with a learning disability get objectified as a task, suggesting a lack of an emotional relationship, that staff humanity and humility dissipates and boundaries can get crossed. This view point is in contradiction with a statement made earlier in Andrew’s interview where he reflects that it is easier to maintain professional boundaries when he perceives those relationships as professional ‘It’s sometimes easier, to be more professional with the clients you’ve not got a great relationship with, because you do everything by the book yeah? With the clients you’ve got a brilliant and you bend over backwards, and you might, you know…I think your professional boundaries cross more of the lines with the client’s you know really well, actually than the clients you don’t know really well’. This contemplation of the impact of staff relationships with the people who use learning disability services on the ability to maintain boundaries was not something identified by the other participants.

A different kind of nursing

Some participants highlighted differences between other nursing settings and residential care for adults with learning disabilities, the main difference being the intensity and longevity of relationships formed and the roles performed within those relationships. Andrew said ‘I mean in residential care...we worked with the same plans for 10 years, I did two sleep ins a

of 181 week so I was the …I worked 60 hours a week… for quite a while I was seeing more of, residential care than, people, than I was my wife and kids you know?...And so you have a, it’s like a second family’. Mary added ‘I think the way that, our roles are and the way that we work, is different than a general nurse…it’s most probably different, than a mental health nurse, when people come in, they’re ill, then they go back out…we’re supporting these people day in and day out, you know for, many, many years, and it is different. I don’t think they, they, the people don’t see us as nurses’. This different kind of nurse relationship with the person with a learning disability, which appeared to be a product of this unique environment, seemed to give rise to difficulties in disentangling the professional from the social relationships. Andrew commented ‘The role- you’d be a mentor for some of the clients you’d be a role model. You would-, you would, in a way be a brotherly figure sometimes to a client, or you would be a fatherly figure sometimes to the client depending on advice etc. Other times you’d just be a-, another, I suppose a peer’. This shifting of role is seen to lead to complexity in managing appropriate boundaries.

Vulnerability and communication

All the participants referred to the unique vulnerability of the learning disability population who either metaphorically do not have their own voice or actually have limited verbal communication. This was demonstrated by

Sarah who, when asked what makes people with learning disabilities more vulnerable to boundary crossings, responded ‘It can be around um, their support networks. Whether or not they’ve got a good support network.

of 181 Whether or not they’ve got an advocate. Whether or not they’ve got family involvement. Their level of understanding. Their level of communication.

You know, are they able to tell somebody else? Would they tell somebody else?’. Claire also added ‘we’ve got to be very aware, you know that we don’t make decisions for people…because I think it could be quite easy for some people, you know, that are you know unable to talk, that people would, just say, this, this, this, this this and they might get it completely wrong’, demonstrating the vulnerability of those with limited communication. Andrew also developed this idea saying, ‘if somebody’s got their own voice, it’s a lot easier, for them to say, you know i-, he tried putting a rope around me. But if you’ve not got your own voice then you’re always, other people especially the more, the more handicapped you are physically, intellectually, you’re relying on others all the time for every personal aspect of your life’.

Mary went on to draw links between the overstepping of boundaries such as physical touch when it is often the only means of communication saying

‘they can’t communicate verbally, they’re showing you a bit of infect-, affectio-, you know, or they want that, you know. You wouldn’t just turn your back on that, cause they’re-, they’re communicating with you’ …

Otherwise y-, you would not have any, any communication with that person would you?’. This suggested that it is not easy to manage boundaries around physical touch when this may be the primary form of communication for a person with a learning disability.

of 181 Staff understanding and management of boundary crossings

When discussing the staff’s understanding and management of boundary crossings it became apparent that for some participants there was a lot of uncertainty or a lack of awareness about this subject area, particularly in relation to the more subtle boundary crossings. This was exacerbated by the complexities around the unique population and setting, making the maintenance of appropriate relationships more difficult. This lack of awareness was reflected in staff views on policy and guidelines such as the

Mental Capacity Act and Safeguarding procedures which were perceived as useful in protecting the person with a learning disability from the more significant boundary violations. However, in terms of subtle boundary crossings this did not provide enough support or do justice to the intricacies of working in this environment.

Speaking about the unspoken: the risks, the realisation, and the benefits

Overarching themes throughout the participant interviews suggested some anxiety about discussing the sensitive topic of boundary crossings. This was manifested in the expression of feeling uncomfortable illustrated for example by Anna’s stammering and hesitance when asked about the differences and similarities in the boundaries between identified roles,

‘would that be, then I would say, tha-, um, I don’t know if I-’. Uncertainty was similarly seen in Claire’s account when asked about her thoughts on whether the changing of role may impact on the maintenance of boundaries

‘Um, (long pause) I don’t know, is the answer to that question, cause most of the things that I’m thinking of could be um, um, how can I put it, um’.

of 181 This anxiety and uncertainty could be suggestive of a lack of understanding of the issues of boundary crossings or may simply reflect some anxiety involved in engaging in a formal interview or in discussing this potentially sensitive topic because of the risk that this may pose to their professional and therefore enmeshed personal identity.

There appeared to be a realisation amongst some participants that this is an area that is simply not spoken about amongst their peers and professionals with Claire saying ‘maybe we don’t even talk about them probably…I’ve not really, I don’t think I’ve ever really talked about it’. The discussion of boundaries for a number of participants appeared genuinely thought provoking. Claire said that the interview ‘made me think, made me think of some que-, you know, for myself’ and Anna said ‘I shall be thinking about this all day today now (laughs) It’s got me actually. Yeah when, it’s not when you start thinking about it you know’. This could potentially give further weight to the notion that this is not a subject area regularly discussed and reflected upon by staff. However, participants appeared to be genuinely interested in the subject.

For some, the benefits of talking about boundaries were connected with the protective and restorative nature of supervision. This was seen as a space to bring complex clients and ethical dilemmas and that supervisory discussions were helpful in the management of boundaries. For example Sarah said ‘I think we’re, we’re very fortunate, I think we get, we get opportunities, you know we get opportunities to meet clinically, at least once a week and talk

of 181 through people, and to raise, issues that, you know, we’ve also got, we’ve got an ethics committee, so if there are issues that we’re concerned about we can take that to ethics and talk about’. The importance of supervision was also identified in Mary’s account, when reflecting on how she managed multiple roles she said ‘I mean, we have good support from above…I know that if I’m struggling I can just pick up the phone and say, ‘Oh god, I’m really struggling’. I think that makes a lot of difference’. Claire additionally discussed the value of peer supervision and reflected that in pressurised environments supervision can often be a neglected aspect of one’s practice

‘I think talking to my peers, like going to, cause you don’t, cause you’re quite isolated…we did used to meet up a lot more. And that-, and that helps you a bit…have a bit of a rant…somebody’s doing your head in…Does make a big difference, but we do do that, a-, um but probably not as much as we probably should’.

How useful are Policies, Training and Guidelines?

The interview schedule used did not contain a direct question about policies such as Safeguarding, Deprivation of Liberty (DOLS) or the Mental

Capacity Act and their use in managing boundaries. Participants used terms such as policy, training and guidelines without specifying what was meant by each. As the differences between these were not examined as part of the interview they will all henceforth be referred to as guidance. The use of guidance was a recurring theme for all participants with the exception of

Andrew.

of 181 The positive impacts of guidance were seen in Anna’s interview who said

‘you have the mental capacity act and best interest in and I have to say that is a really…you see the difference, the things that have come in now which is the-, only better for the person’. However, for others there appeared to be a number of relational perspectives, some of which felt contradictory such as the benefit yet the fallibility of such guidance due to its inability to reflect the complications of real life in residential services. Mary said ‘I mean we all know about safeguarding, what safeguarding is, what abuse is and whatever, we have all the training and everything like that so, yes that’s, you know, quite clear I think, it’s, it’s, quite clear, black and white to say, right if this happens, that’s, abuse and whatever…it’s not straight as-, forward as what’s written in black and white but you, could do for people, say with learning disability, I th-, I think, each case has to be done on its own, like-, like for the person, looking at that person’. Claire said ‘you go by your code of practice, but what’s in your code of practice, could be very different that how you would manage it in the, in this type of, home’.

Furthermore, guidance was recognised as being helpful specifically in relation to boundary violations, which were considered to be the more severe and easily recognisable incidents. This can be seen in Claire’s interview, in which she stated ‘boundary violations, I think that’s something that, you know like exploits a client. I don’t, or harms a client no I can’t think, because to me will all come under safeguarding and whistle blowing and all that shenanigans’. Sarah said ‘we have safeguarding, we have training, we have whistle blowing, we have situations in place…abuse, is

of 181 clear, you know, it’s very clear about, about the process that’s followed… but that very sort of subtle, trying to, persuade people to, do things that maybe the member of staff wants to do, is the bit that really needs to be picked up on, and that’s, that’s where boundaries are becoming blurred so that, you know that’s the bit that’s, sometimes a bit harder to spot’. This suggests that whilst guidance is useful in relation to the recognisable boundary violations, guidance may be actively unhelpful in response to boundary crossings and does not therefore meet the need of all of the participants.

Discussion Findings

This study aimed to explore how the variety of nursing roles in services for adults with learning disabilities impact on maintaining professional boundaries. The research literature suggested that given the intimate nature of care provided in residential settings and the need to manage multiple roles, boundaries may become confused (Owen et al., 2000). Boundary management may exist on a ‘slippery slope’ (Simon, 1995), where minor boundary crossings can escalate over time to more significant boundary violations (Welsh, Ordóñez, Snyder & Christian, 2015). These concerns made it necessary to try and understand the processes involved in boundary maintenance further. This research provided the opportunity for this however; it seemed that multiple roles and maintaining boundaries were not the key issue for these participants.

of 181 Investment and enmeshment of one’s self in the role

Rather than making sense of their relationships with the people they provide care for in terms of managing boundaries, participants focused more on their emotional connection with their nurse status, identifying it as ‘more than a job’, suggesting an enmeshment of the professional identity within their non-professional personal identity. This shifted their attention away from what might be problematic in the caring relationship towards idealising the relationship as on a par with other relationships in non-professional aspects of their lives. The entangling of personal and professional roles could be seen as affecting the participants’ ability to reflect on practice and make appropriate judgements about the care they are providing. These judgements were evidenced in some interviews by participants indicating that they felt assured that they knew the client well, and so were unreservedly acting in their best interest.

Recent initiatives aiming to transform the care of people with learning disabilities have focused on working with the individuals through adopting a person-centred approach (Department of Health, 2009). Whilst some participants mentioned person-centred care in the interviews, for the most part, there appears to be a lack of understanding as to how care should be offered to people with a learning disability. There appears to be confusion between the concepts of person-centeredness, which keeps the individual at the centre of their care arrangements by taking into account their preferences and strengths, with the assumption that staff feel they know the individual and therefore will inevitably act in their best interest.

of 181 In believing they know best, staff appeared to be making the assumption that the people they were caring for were implicitly agreeing to, or were encouraging staff practices or care decisions. One cannot necessarily take participants’ accounts that assume this agreement given the extensive literature on the ‘acquiescence bias’ (Sigelman, Budd, Spanhel &

Schoenrock, 1981a, 1981b) and ‘handicapped smile’ (Sinason, 1992), which suggests that staff tend to assume the person with a learning disability is enjoying or agreeing to certain interactions when this may not be the case

(Hollins & Sinason, 2000).

In other cases, instead of focusing on boundaries in their client relationships participants often spoke about ‘good care’ and likened this to interactions with family and friends. These ideas are in line with the concept of

‘Intelligent Kindness’ (Ballat and Campling, 2011). Campling suggests that the word kindness has historical roots in the word ‘cynd’, which means family or kin. Kindness therefore implies ‘the recognition of being of the same nature as others, being of a kind, in kinship’ (Campling, 2015, p. 3).

‘Intelligent Kindness’ relates to the care of those with a physical illness however, its ideas could be applied to the care of people with learning disabilities. ‘Intelligent Kindness’ proposes that kindness lies at the centre of effective front line healthcare and that staff are motivated to treat others as members of the family, creating a virtuous cycle which supports a better therapeutic alliance, better outcomes and a subsequent reduction in staff anxiety and increase in satisfaction (Ballat and Campling, 2011).

of 181 Whilst the suggestion that nurses treating patients as family member in many ways may sound idyllic, it is important to note that this raises issues for client care. Given the differences in family values and relationships, it could be suggested that each staff may apply the concept of caring for ones’ patient as a family member in differing ways. This raises issues for continuity of care and could be confusing for individuals who have interactions with multiple staff who all approach their role from a slightly different perspective. Having staff-client relationships that are similar to family relationships may also blur the emotional boundaries leaving potentially vulnerable patients open to abuse, particularly when paired with an ‘I know them, therefore I know best’ assumption by staff.

Unique setting and population

The construction of the caring role as being more like a relationship with family and friends was suggested by participants to be due to the differences in nursing people with learning disabilities, both in terms of length and intensity of relationships.

The majority of participants failed to identify with the concept of holding multiple roles and the impact this may have on the relationships with service users. However, one participant did identify himself as having multiple roles as a ‘mentor… a role model…a brotherly figure…a fatherly figure…(and at) other times a peer’. One can assume that there may be challenges in balancing the requirements of each of these roles, and that such challenges

of 181 may lead to role conflict (Matteson & Ivancevich, 1982; Chang & Hancock,

2003) and contribute to staff burnout (Lambert & Lambert, 2001; Zammuer,

Lotto & Galli et al. 2003).

Instead the focus for the majority of participant interviews was the effect of managing work place demands and the impact this had on their caring relationships. Participant interviews emphasised concerns around balancing client needs within service limitations and the occupational stress that arises from this. One participant suggested under pressure ‘that (the) role changes from, from being somebody’s friend or mentor to… that person becoming a task’ which could be indicative of the objectification of the individual.

Objectification and depersonalisation of service users in order to preserve one’s emotional resources is a suggested consequence of burnout (Maslach,

Jackson & Leiter, 1996). This in turn could lead to a deterioration in quality of care (Prosser, et al. 1996; Rowe & Sherlock 2005) as emotionally exhausted staff in learning disability services have been shown to display negative, cynical attitudes and feelings towards those they care for and negative responses to behaviour (Rose, Horne, Rose & Hastings, 2004).

Staff understanding and management of boundary crossings

In addition to not identifying with the concept of multiple roles, participants also did not readily identify with the concept of boundaries. They appeared to lack confidence in discussing their understanding of the issues relating to boundaries and in particular, the more subtle boundary crossings. While this anxiety could be suggested to reflect a lack of understanding, alternatively

of 181 this may be because they did not see the applicability of this concept to their everyday practice (Collins, 2010; Hames, 2006; Jenkins et al., 2008).

However, study limitations and subsequent difficulties in interpretation must be considered. These will be discussed below. As the application of the

‘slippery slope’ model is contingent on varying identifiable degrees of boundary mismanagement that start small and incrementally become more problematic, the fact that participants did not identify with these concepts ruled out the applicability of this framework. The utilisation of these concepts may have been influenced by my own professional background, the impact of which is discussed further when considering methodological limitations of this research below.

Participants highlighted the value of supervision in providing support but that it doesn’t happen as much as it ‘probably should’. Some participants claimed that they did not have time to attend regular supervision, nor were provisions made for this purpose, with ad hoc meetings and telephone calls being used to attempt to fulfil the need. A lack of supervision may promote cultures of abuse through enabling ‘un-noticing environments’ (Green,

2013) which may be isolated and lack transparency as to their practices.

Additionally, where there is a lack of supervision, difficult conversations about one’s lack of understanding, issues within caring relationships, or challenges in one’s practice can be easily avoided, something which increased supervision may counteract.

of 181 Finally, participants identified ambivalence towards policy and guidance and noted that they were insufficient in managing the complexity of their roles and client relationships. On the one hand, some participants regarded it in principle, as helpful in supporting and protecting people with learning disabilities from the more serious boundary violations. On the other hand, participants appeared to find guidance confusing or were unable to relate it to the subtler intricacies of working with this population. The implication from participants was that current guidance was insufficient to equip them with the skills and knowledge to deal with the complexities of their roles.

Methodological Limitations

While this study aimed to investigate the impact of the multiplicity of nursing roles on boundary crossings in residential services for people with learning disabilities, some limitations impacted on the effectiveness with which this aim was achieved.

One such limitation is the constraints placed upon the interview. The initial interview requested examples from participants of boundary crossings from their own experience and those the participant might have observed in other people. However, changes had to be made to the interview schedule following issues around disclosure. These actively discouraged participants from providing concrete examples to think through and explore, which may have limited the opportunity to express genuine opinions. One might have anticipated that in preventing the discussion of examples during the

of 181 interview that there would be a difference between the themes emerging from the first participant interview in which examples were requested and those of the remaining participants where examples were actively discouraged, however, no difference was seen. It is possible that participants’ experiences of feeling constrained may have increased their anxiety in talking about this difficult subject area, reinforcing the

‘unspoken’ nature of boundaries (Allington, 1992). Additionally, these constraints may have led to the conceptual difficulties in recognising the issues around boundary management. These uncertainties about the data potentially impact upon the transferability of the findings to nurses and other settings.

Regardless of the warning to stay away from examples of real boundary crossings, this topic is likely to have been viewed as potentially socially sensitive. This may have resulted in participants responding in a way they deemed to be socially desirable (King & Brunner, 2000), which could have influenced the authenticity of the data. To minimise this, confidentiality and anonymity were emphasised by the interviewer and participants were verbally reassured there was no right or wrong way to answer questions.

From analysis of the transcripts it appears that the majority of participants were open throughout the interview as evidenced by their descriptions of uncertainties, confusion and ethical dilemmas. This could however, indicate the lack of self-reflection on practice described above where participants thought they were right and therefore saw no threat in exposing such dilemmas.

of 181 As previously mentioned, all participants in this sample were managers. The existing literature on boundaries and abuses with people with learning disabilities fails to identify the position held by members of nursing staff. It is therefore possible that the lack of focus on multiplicity of roles and their associated boundaries (Golding, 2001) could be associated with some kind of self-selection bias (Dallos & Vetere, 2005) associated with participants all being managers. In this study this bias could be attributed to the dissemination of information with regards to the recruitment of research participants, which may not have effectively extended beyond service managers to other qualified nurses. However, this is only conjecture.

Similarly, this apparent bias could be attributed to interest and investment in research and in the subject matter, time available to engage in activities outside of one’s day to day role or the technicalities of scheduling in such activities around unsociable shift patterns.

Given my professional background in Psychology, the concept of boundary crossings was something I was familiar with professionally. I regularly reflect on the management of professional boundaries in my clinical practice and view this as inherent to my understanding of what it is to be a good practitioner. Engaging with this research made me aware of the discrepancies between my understanding and the understanding of other professions. The impact of my views on analysis and interpretation were reflected upon regularly in supervision and I initially felt concern at the apparent absence of the construct of boundaries from nursing care with this

of 181 population. Immersion in the data has enabled me to adopt a less egocentric and more curious position to hear the stories of the participants and understand how closed cultures and increasingly pressurised environments can draw attention away from issues such as boundaries by reducing and devaluing thinking spaces like supervision.

Recommendations

Recommendations for clinical practice

As the conclusions drawn are a co-creation between the researcher’s and participants’ understanding, caution must be taken when applying these findings to a wider context. Despite this, it is suggested that themes may be relevant to those from comparable samples (Smith & Osborn, 2003) highlighting the importance of generalisations in the broader, theoretical context (Smith & Osborn 2008). As the participants in this study were all managers it is difficult to transfer their experiences to other staff members in these settings however, it is not an unrealistic assumption to assume that other staff, and in particular, managers working in learning disability services may experience similar pressures and challenges.

Findings from interviews indicated that there appears to be a lack of consensus amongst participants as to models of care for people with learning disabilities. Participants displayed a tendency to view good care within their client relationships as being similar to those in personal relationships. Findings additionally suggested that due to setting factors

of 181 such as the longevity and intensity of these caring relationships, staff may be inclined to adopt a position in which they unequivocally feel they are acting in the clients’ best interest, implying a lack of self-reflection in terms of their practice. Staff may therefore benefit from further training as to models of care and further exploration of its component concepts such as person-centeredness to ensure they are keeping the client at the centre of care provisions.

Supervision was highlighted in participant interviews and in the literature and as a contributory factor to good residential care (Stanley, Manthorpe &

Penhale, 1999). However, it was suggested by participants that does not happen as much as it should. It could be suggested that perceiving one knows best, paired with participants’ apparent uncertainty around boundary issues, occupational stress and a lack of supervision space may leave clients vulnerable to abuse. Time and space for regular supervision in a secure and safe environment needs to be made in order for staff to feel able to explore any complex issues or emotions they may be experiencing. This may in turn increase reflection and practice transparency, reducing potential occupational stress and its associated negative implications for client care

(Coffey & Coleman 2001; Happell, Martin & Pinikahana, 2003).

In order for supervision and reflective thinking to be encouraged at a grass roots level, its value needs to be highlighted organisationally with scheduled time and allocated resources. Due to the sensitivity of discussing boundaries

of 181 and the anxieties highlighted by participants, this research suggests supervision from an outside agent might be beneficial in enabling staff to share information free from the concerns of reproach and without pressures to conform. This may in turn support nurses in considering the impact of their relationships with clients and managing their occupational stress, which may in turn be helpful in preventing abuse.

Recommendations for future research

To further explore the issue of boundary maintenance and whether it is applicable more globally to nursing experience it would be beneficial to try and engage with staff with different training and experiences, working at a number of levels. Additionally, given the current lack of clarity on this issue, it would be helpful for future research to explore in depth staffs’ experience of training and policy, with a view to modifying guidance so that it is best able to meet nurses’ needs and reflect the complexity of their roles.

Finally, due to the sensitive nature of this topic area, findings suggest that future research may benefit from additional exploration as to data collection practices that better deal with issues around disclosure of poor practice in order to further investigate the issue of boundary maintenance in the nursing population.

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List of Empirical Paper Appendices

Appendix 1: Review of Qualitative Methodology Appendix 2: Interpretative Phenomenological Analysis Suitability Information

of 181 Appendix 3: Participant Recruitment Procedure Appendix 4: Initial Participant Information Sheet Appendix 5: Initial Consent form Appendix 6: Demographic Questionnaire Appendix 7: Initial Indicative interview Schedule Appendix 8: Quote 1: UKCC (1999) Appendix 9: Quote 2: Gutheil and Gabbard (1993) Appendix 10: Participant Debrief Sheet Appendix 11: Trust R&D Letter of Ethical Approval Appendix 12: University of Surrey letter of Ethical Approval Appendix 13: Revised Indicative interview Schedule Appendix 14: Email from University of Surrey granting approval of revision to project paperwork Appendix 15: Revised Participant Information Sheet Appendix 16: Revised Consent form Appendix 17: Data Analysis Procedure Appendix 18: Extract from coded participant transcript demonstrating process of initial note taking and development of emerging themes Appendix 19: Extract of table of themes Appendix 20: Table of relevant super- and sub-ordinate themes with relevant participant quotes Appendix 21: Credibility Information Appendix 22: Reflective Statement

Appendix 1 Review of Qualitative Methodology

of 181 A qualitative methodology was used as the research was primarily interested in individual staff member’s understanding of the interplay between their management of multiple roles and boundary crossing behaviour, and the

“meanings” they make of this. Qualitative research enables the researcher to adopt an exploratory position which is appropriate for this study where there is a dearth of existing literature and no clear theory or hypotheses to be tested (Silverman, 2006).

of 181 Qualitative research aims to comprehend and represent the actions and experiences of people in context-specific settings (Elliot et al., 1999).

Qualitative approaches contain the same empirical elements as quantitative approaches such as the collection, analysis and interpretation of observations or data (Ponterotto, 2005). The main difference between qualitative and quantitative methodology lies in their ontological positions with the former taking a constructionist-interpretivist view that reality is subjective and influenced by an individual’s experience (Ponterotto, 2005) and is committed to understanding the subjective experiences and actions of the individual (Marecek, 2003).

A range of qualitative methodologies were considered for the purpose of this study. Thematic analysis tends to be used with large numbers of participants to generate an overall perspective of a particular phenomenon rather than an in depth exploration of individuals’ experiences. This is in contrast to the two levels of theme development present in interpretative phenomenological analysis (IPA) procedure. The development of

‘emergent’ themes from each data set, enables the researcher to stay very close to the individual’s phenomenology and maintain a more idiographic focus, and then subsequent ‘superordinate’ themes are developed across all the data. This is in contrast to Grounded Theory which aims to generate a comprehensive theoretical framework for the topic under discussion and therefore lends itself more readily to instances where the idiographic or phenomenological aspects of the topic have already been researched. Due to the limited nature of research in this area a Grounded Theory approach was

of 181 considered to be inappropriate. It was also considered that it would have been difficult to manage the necessary sampling strategy within the confines of a professional doctorate.

Appendix 2 Interpretative Phenomenological Analysis Suitability Information

of 181 Interpretative phenomenological anabasis was deemed as the most appropriate method for this research as it adopts a phenomenological stance that is concerned with the participant’s personal account which allows for detailed exploration of the participant’s view of the topic under discussion rather than concerning itself with the production of an objective statement

(Smith, 1996; Smith, Jarman & Osborn, 1999). Additionally, it is considered to be applicable to social, health and clinical psychology as well as being suitable for the exploration of topics with health care professionals (Fade,

2004; Smith & Eatough, 2007).

The interactionist stance held by this methodology acknowledges the existence of the dynamic created by the research interview whereby the researcher, in attempting to access the participant’s world of meaning, may complicate this through their own conceptions. IPA acknowledges that co- construction of meaning is an essential part of the process of interpretative activity (Shaw, 2001; Smith et al., 1999). This creates a two stage interpretation/double hermeneutic where the participant is trying to make sense of their world, whilst the researcher is trying to make sense of the participant trying to make sense of their world (Smith & Osborn, 2003).

of 181 Appendix 3 Participant Recruitment Procedure

of 181 Staff were informed about the project through an email which was cascaded down from senior to local service managers and staff were encouraged to contact the primary researcher if they were interested in taking part.

Additionally awareness was raised as to the research project through local

NHS trust staff meetings where staff were given access to a copy of the

Participant Information Sheet and similarly staff were encouraged to contact if they wished to take part. Following making contact, eligibility was established, a further copy of the Participant Information Sheet was provided and any questions about the project were discussed with the interested party.

An interview time and space was arranged at the individual’s place of work at their request. A gap of at least one week between initial contact and the interview was provided to allow the participant sufficient time to read the

Participant Information Sheet and make an informed decision as to whether they wished to take part.

All except one individual who made contact went on to complete the study.

Despite attempts to make contact via telephone and email, the remaining individual did not make contact with the researcher again. Due to the lack of subsequent communication it is unclear why this individual, having expressed an interest, chose not to take part in the study.

of 181 Appendix 4 Initial Participant Information Sheet

31.03.14 Version 1 Participant Information Sheet

Introduction My name is Naomi Harris and I am a trainee clinical psychologist based in the Psychology Department at the University of Surrey, Guildford. This means that I already have a university degree in psychology, and am taking my studies further by now studying on a post-graduate training programme called a PsychD which is a doctorate level qualification. In order for me to study at this post-graduate level, I need to have relevant experience too. I have worked as a research assistant and assistant psychologist alongside people with a variety of needs including adults with learning disabilities.

of 181 As part of my training on this PsychD programme to become a clinical psychologist, I have to conduct research.

Having worked with people with learning disabilities I am aware of the multiple pressures and roles facing the staff who support them. I am therefore researching whether the perceived different roles and responsibilities that nursing staff may have affect the way in which they provide care and maintain their professional boundaries.

I would like to invite you to take part in my study. To help you decide, please read this Information Sheet so that you know what you will be asked to do.

What is the study about? There has been a suggested distinction between the more subtle boundary crossings (acts which involve stepping out of the usual professional framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client; Gutheil and Gabbard, 1993). I am interested in the minor boundary crossings and what may lead to these. One theory is that nursing adults with learning disabilities can be complicated by the fact that providing direct care requires staff to adopt many different roles including; ‘nurse’ administering medication, a ‘carer’ providing personal care, a ‘cook’ preparing meals, a ‘friend’ engaging in social activities such as shopping, a ‘counsellor’ listening to the client and ‘parent’ responding to and motivating the client (Golding, 2001). It has been suggested that switching between and maintaining these different roles may make it difficult to preserve appropriate boundaries and may therefore affect the care provided to the client.

Why have I been invited? The study is open to all nurses registered with the Nursing and Midwifery Council (NMC), currently working in a residential service for adults with learning disabilities half time (18.75 hours a week) or more, with at least 12 months’ experience of this kind of work who have been qualified for one year or more.

Do I have to take part? No, taking part in this study is entirely up to you. To help you decide whether or not to take part, you can talk it over with friends, family, colleagues, etc. You can also contact me for further information and I will be happy to answer any queries. My contact details are at the end.

Even if you agree to take part, you can choose not to answer all of the questions in the interview and you can also stop the interview at any time without giving a reason. You are able to withdraw your data from the study up until the point of analysis, please contact me by Monday 2nd March 2015 if you would wish to do this.

of 181 What will I have to do? If you decide to take part you will be asked to sign a Consent Form. You would then be asked some demographic questions including when you qualified and how long you have been working with people with learning disabilities. You will then be asked to complete an interview which will last approximately 1 hour. In order to cause minimum disruption to your day this usually takes place in a quiet location at your place of work. I will ask you about your thoughts on the different roles you may have with clients. I will also ask you to think of some examples of when you and your colleagues may have stepped out of your professional role or crossed your perceived professional boundaries when caring for a client and what factors you think may have contributed to this. The interviews will be recorded, but will only be accessed by me and my research supervisors. You will not have to give any names or identifying details about the individuals you are discussing, and all personal information will be kept confidential. How do I agree to take part? You will be asked to sign a Consent Form, to say that you have understood what the research is all about and that you have had the chance to ask me any questions first. The Consent Form also says that all information about you is kept confidential in accordance with the Data Protection Act 1998.

Does what I say get shared with anyone else? Information is shared with my research supervisors. Your name and all personal details about you will be kept anonymous in the study.

Research is always supervised by someone senior, so my research supervisors may have access to the information about you during the research study. As supervision is to help me ensure I am conducting the research properly and according to ethical guidelines, your real name would not be used during these sessions and I would use a fictitious name to identify you. My research supervisors’ names and contact details are at the end.

All audio recordings and information gathered during this research study will be stored securely in a locked filing cabinet at the researcher’s home or at the University of Surrey, in accordance with the Data Protection Act 1998 and will be destroyed after ten years.

Are there any reasons why you may breach confidentiality? If you share information during the interview which leads to sufficient concern about your safety or the safety of others I will discuss these concerns with my research supervisors. I have the same responsibility as any other NHS employee to safeguard people and local multi-agency safeguarding procedures will be followed if necessary.

What happens when the research study is completed? Research takes time, often years, to complete. By then you may have forgotten about it! Researchers usually like to have their research findings

of 181 published in relevant journals so that others working in the same field can learn more. I can send you a copy of the final research study if you would like, plus copies of any articles in which the research is published. This piece of research will be completed by December 2016.

Sometimes we present our research findings at meetings (for instance, at service users’ and carers’ support groups or conferences). Again, all personal details about you will be kept confidential (your real name, your age, gender, where you live, etc), and no-one will be able to identify who you are.

What are the benefits of taking part in this research? We cannot promise that the study will help you. However, the research project will allow you to have time and space to reflect on your practice and identify any potential difficulties with your role which may be helpful to go on and discuss with supervisors.

Potentially this research may help to influence future training and the support of staff who work in settings which can be complex and demanding. This research may also help to identify client and staff characteristics in managing these complex relationships. This could lead to an increased understanding of vulnerability factors and how these could be addressed, helping to improve the services offered by the NHS.

Changes to health services are based on the findings of research studies. It is only by researching real people and real issues, can we discover what’s working and what needs improving. Your input to this research into the challenges facing nursing staff who care for adults with learning disabilities is therefore vital.

Are there any downsides of taking part? You may find some of the questions difficult. I am not being intrusive or judgemental by asking these questions as they are needed for my research.

If you find a question too upsetting in any way, you don’t have to answer it. We can also take a break at any time during the interview or decide not to carry on with it. Many people find talking about challenging professional experiences can be helpful, but others may find it brings up difficult emotions. If this happens and you would like some support afterwards, then I can spend some time with you or you may wish to discuss your concerns with your manager, supervisor, or GP. Alternatively you may wish to contact SABP’s confidential Employee Assistance Programme on 0800 919 709. You may also wish to contact the Stress Management Society (http://www.stress.org.uk/) for support in managing stress in the workplace. If you have concerns about a risk, malpractice or any other serious concern, you should raise it by telephoning SABP’s Whistleblowing Service on 0800 197 2814.

of 181 What if there is a problem? If you have any concerns or complaints about the way you have been dealt with during the study or any aspect of this study you can discuss these with me and I will do my best to answer your questions. If you remain unhappy and wish to complain formally you can do so by contacting my research supervisors.

Has the research been approved by any committee? This study has been reviewed and approved by the IRAS R&D Committee and the Faculty of Arts & Human Sciences at the University of Surrey Ethics Committee to protect your safety, rights, dignity and well-being.

~~~~~~~~~~

I hope I have answered all of your questions about the research study, but please feel free to ask me anything else that I have not covered. My contact details and those of my supervisor are below.

Thank you for taking the time to read this Information Sheet.

Research conducted by: Supervised by Supervised by: Supervised by: Naomi Harris Dr Nan Holmes Dr Karen Dodd Dr Kate Gleeson Trainee Clinical Psychologist Research Supervisor Field Superviso Department of Psychology Department of Psychology Ramsay House Department University of Surrey University of Surrey West Park University of Guildford Guildford Horton Lane Guildford GU2 7X GU2 7XH Epsom 01483 689441 01483 689433 01372 205767 01483689815

of 181 Appendix 5 Initial Consent form

31.03.14 Version 1 Participant Consent Form An exploration of how the variety of nursing roles in services for adults with learning disabilities may impact on maintaining professional boundaries

Name of Researcher: Naomi Harris, Trainee Clinical Psychologist. Please initial box I confirm that I have read and understand the information sheet for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. I understand that I do not have to take part and I am able to leave the study at any time without giving a reason.

of 181 I understand that my interview will be recorded. I understand that only the researcher and research supervisors will have access to this recording and it will be stored in a secure location.

I understand that after the interview has finished I am still able to withdraw my data, if I wish to do this I will contact a member of the research team before Monday 2nd March 2015.

I understand that if I disclose information that involves concerns about my immediate safety or the immediate safety of others, the researcher will have to break confidentiality and inform their research supervisors or my manager and this may be without my consent.

I understand that the data collected by this research will be looked at by authorised persons from the University of Surrey; this will include supervisors, other researchers and examiners. All will have a duty of confidentiality to me as a research participant. I understand that all audio recordings and information gathered during this research study will be stored securely in a locked filing cabinet at the researcher’s home or at the University of Surrey, in accordance with the Data Protection Act 1998 and will be destroyed after ten years.

I am aware that the findings from this study will be written up for a Doctoral Thesis and may be considered for publication. This may include direct quotes from my interview. All my data will be anonymised and no identifiable data about me or individuals I know will be used. I agree to take part in the above study. Participant Signature: Date: ………………………………………………………….. Researcher Signature: Date: …………………………………………………………..

of 181 Appendix 6 Demographic Questionnaire

of 181 31.03.14 Version 1 Demographic Information Questionnaire

Please tick to indicate your response.

1. What is your gender? Male Female

2. How old are you? 20-29 years 30-39 years 40-49 years 50-59 years 60-69 years 70-79 years

3. What is your ethnicity? White: British White: Irish

White: Other White: Please Describe White: Gypsy or Irish Traveller …………………………………………………. Mixed: White and Black Caribbean Mixed: White and Black African Mixed: Other Mixed: Please Describe Mixed: White and Asian …………………………………………………... Asian: Indian Asian: Pakistani

Asian: Bangladeshi Asian: Chinese Asian: Other: Please Describe …………………………………………. Black: African …. Black: Other: Please Describe Black: Caribbean ……………………………………………… Other: Please Describe Other: Arab ………………………………………………

4. How many years have you been working as a registered nurse? Up to 5 years 5-10 years 10-15 years 15-20 years 20-25 years More than 25 years

of 181 5. What was the title of the nursing qualification you completed?

6. How long have you worked in services for adults with learning disabilities?

7. What kind of services for adults with learning disabilities have you worked in? Community Services Forensic Services Day Services Residential Services Other: Please describe……......

8. How long have you worked in residential services for adults with learning disabilities (if applicable)?

9. Have you had experience of working the following shifts (tick as appropriate)? Day Shifts Night Shifts Other: Please describe……......

Appendix 7 Initial Indicative interview Schedule

of 181 31.03.14 Version 1 Indicative Interview Schedule

Section 1: Your understanding of the role of a nurse in services for adults with learning disabilities

Question (Q-to be used during interview): I would like to understand more about the way you understand the role you play in caring for people with learning disabilities, and how professional boundaries are dealt with in many different aspects of your role. Perhaps we can start by you telling me something about your role, and the different kinds of things you do with people with learning disabilities? Prompt Question (PQ-to be used if needed during interview): Can you tell what you think about the different roles within your role? PQ: Any difficulties? PQ: How do you respond?

Section 2: What is your understanding of boundaries?

of 181 The following information will be presented to the participant on a piece of card: The NMC website defines boundaries as ‘the limits of behaviour which allow a nurse to have a professional relationship with a person in their care. The relationship between a nurse and the person in their care is a professional relationship based on trust, respect and the appropriate use of power. The focus of the relationship is based on meeting the health needs of the person in their care. A nurse crosses a professional boundary when they behave in any way that oversteps their professional role with a person in their care.’

Q: What are your thoughts about this statement? Q; How do you make sense of this? Q: As a nurse what do you think is meant by the term professional boundaries?’

Section 3: What is your understanding of the difference between boundary crossings and boundary violations?

The following information will be presented to the participant on a piece of card: ‘Gutheil and Gabbard, (1993) identified a distinction between the more subtle boundary crossings (acts which involve stepping out of the usual framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client).’

Q: What do you make of this? Q: Can you think of some examples of what you consider to be boundary violations? Prompt if needed: For example some people may consider inappropriate physical contact, use of abusive language and becoming overly affectionate as boundary violations. Q (may need to be repeated after prompt): Can you think of some examples of what you consider to be boundary violations? PQ: What makes you consider these a boundary violation? PQ: How would you recognise a boundary violation?

Q: Can you think of some examples of what you consider to be boundary crossings? Prompt if needed: For example some people may consider providing personal information about themselves to clients, the sharing of food or giving preferential attention to a particular client as boundary crossings. Q (may need to be repeated after prompt): Can you think of some examples of what you consider to be boundary crossings? PQ: What makes you consider these a boundary crossing? PQ: How would you recognise a boundary crossing?

Statement to be read out by interviewer: For the next part of the interview I would like us to focus specifically on boundary crossings and not boundary violations.

of 181 Section 4: What is your experience of observed of personal boundary crossings?

Q: I wonder if in your work you have ever noticed situations where nurses have crossed boundaries or were about to cross boundaries with a client? Can you tell me about this? (Interviewer will initially use open ended prompts e.g. PQ: Is there anything else? PQ: Can you tell me anymore?) PQ: How did you recognise it as a boundary crossing? PQ: Was there anything about that particular situation that you think may have influenced what happened? PQ: Was there anything particular about that nurse that you think may have influenced what happened? PQ: Was there anything particular about that environment that you think may have influenced what happened? PQ: Was there anything particular about that client that you think may have influenced what happened? PQ: Do you think what happened was influenced by the nurse’s multiple or changing roles?

Request any additional examples from participant and repeat.

Q: Can you remember a time when you crossed a boundary with a client or noticed that you were about to cross a boundary? Can you tell me about this? (Interviewer will initially use open ended prompts e.g. PQ: Is there anything else? PQ: Can you tell me anymore?) PQ: I wonder if you can tell me a bit more about what stopped you? (if applicable) PQ: Was there anything about that particular situation that you think may have influenced what happened? PQ: Was there anything particular about you or your characteristics that you think may have influenced what happened? PQ: Was there anything particular about that environment that you think may have influenced what happened? PQ: Was there anything particular about that client that you think may have influenced what happened? PQ: Do you think what happened was influenced by your multiple or changing roles? PQ: Did you learn anything about yourself or your role as a nurse?

Request any additional examples from participant and repeat.

Q: Can you think of any other experience that may have informed your opinions of what we have talked about today? PQ: This may be a personal or professional experience, membership of a union etc…

of 181 Appendix 8 Quote 1: UKCC (1999)

of 181 The UKCC defines boundaries as ‘the limits of behaviour which allow a nurse to have a professional relationship with a person in their care. The relationship between a nurse and the person in their care is a professional relationship based on trust, respect and the appropriate use of power. The focus of the relationship is based on meeting the health needs of the person in their care. A nurse crosses a professional boundary when they behave in any way that oversteps their professional role with a person in their care’ (1999).

of 181 Appendix 9 Quote 2: Gutheil and Gabbard (1993)

of 181 ‘Gutheil and Gabbard, (1993) identified a distinction between the more subtle boundary crossings (acts which involve stepping out of the usual framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client).’

Appendix 10 Participant Debrief Sheet

of 181 31.03.14 Version 1 Participant Debrief Sheet An exploration of how the variety of nursing roles in services for adults with learning disabilities may impact on maintaining professional boundaries

A distinction has been made between the more subtle boundary crossings which involve stepping out of the usual framework, but not harming or exploiting the client, and easily identifiable boundary violations which exploit or harm the client (Gutheil and Gabbard, 1993). It has been suggested that offences may occur as the professional’s neutrality is eroded away over time, which may culminate in serious boundary violations (Stromm-Gottfried, 1999). Nursing staff have a number of professional roles which may make it difficult to maintain appropriate boundaries including; a ‘nurse’ administering medication, a ‘carer’ providing personal care, a ‘cook’ preparing meals, a ‘friend’ engaging in social activities such as shopping, a ‘counsellor’ listening to the client and a ‘parent’ responding to and motivating the client (Golding, 2001). There is a lack of detailed understanding of the relationship between staff roles, and the factors associated with boundary crossings in residential settings with adults with learning disabilities. This study aimed to explore this relationship by gathering information on perceived multiple roles of nursing staff, the impact of these roles on examples of innocuous boundary crossings and the contributory factors surrounding any boundary crossings described. It is anticipated that environmental/situational features, client characteristics and the multiplicity of nursing staff roles may be perceived as contributory factors to boundary crossings. If you have found that talking about challenging professional experiences has brought up difficult emotions and you would like some support you may wish to discuss your concerns with your manager, supervisor, or GP. Alternatively you may wish to contact SABP’s confidential Employee Assistance Programme on 0800 919 709. You may also wish to contact the Stress Management Society (http://www.stress.org.uk/) for support in managing stress in the workplace. If you have concerns about a risk, malpractice or any other serious concern, you should raise it by telephoning SABP’s Whistleblowing Service on 0800 197 2814.

of 181 Please contact Naomi Harris or her research supervisor Dr Nan Holmes and Dr Karen Dodd if you have any questions regarding this study. THANK YOU AGAIN FOR YOUR COOPERATION

Appendix 11 Trust R&D Letter of Ethical Approval

of 181 Page 123 of 181 Page 124 of 181 Page 125 of 181 Appendix 12 University of Surrey letter of Ethical Approval

of 181 Page 127 of 181 Appendix 13 Revised Indicative interview Schedule

of 181 13.04.15 Version 2 Indicative Interview Schedule

Before Interview • Welcome and thank you • Introduce myself I am a Trainee Clinical Psychologist, completing Doctoral research thinking about why boundaries get crossed; as such I may need to discuss interviews with my research supervisors • Comfort (toilets, breaks, temperature, timings) • Plan: Info, consent, demographic, interview • Interview I do not want specific examples, you may think about examples but I do not want details of these. If I think you are describing a specific example I will stop you • Client will be given a copy of the Participant Information sheet. Interviews will last about 1 hour they will be thinking about relationships, roles and boundaries with clients with LD. Interviews will be recorded by Dictaphone so they can be transcribed (typed up).

Confidentiality • As a Trainee Clinical Psychologist I may need to share content of interviews with research supervisors • When discussing interviews with others I will do so in a way which as far as possible protects your anonymity. • Anonymised-confidential information will be removed. • If I believe the information shared poses a risk to self or others. I may need to tell: • My supervisor • Your manager/supervisor • Initiate safeguarding procedures • Interviews will be recorded and stored confidentially for access by the research team. • Transcribed (typed up) by myself or another professional who’ll follow confidentiality procedures. • Audio recordings and transcripts will be stored on an encrypted memory stick. Hard copies of transcripts required for analysis will be stored in a locked storage cabinet at the researcher’s home or at university. • Data destroyed after 10 years in accordance with data protection. • When using quotes, every effort will be made to anonymise the information and protect confidentiality

Section 1: Your understanding of the role of a nurse in services for adults with learning disabilities

of 181 Question (Q-to be used during interview): I would like to understand more about the way you understand the role you play in caring for people with learning disabilities, and how professional boundaries are dealt with in many different aspects of your role. Perhaps we can start by you telling me something about your role, and the different kinds of things you do with people with learning disabilities? PQ: Prompt Question (PQ-to be used if needed during interview): Can you tell me about how you manage professional boundaries and how you manage these within the things you do? PQ: Kind of issues that come up in one role and not in another? PQ: Switching activities? Is it easy to swap tasks? PQ: The different aspects of your role? PQ: Any difficulties? PQ: How do you respond?

Section 2: What is your understanding of boundaries?

The following information will be presented to the participant on a piece of card: The NMC website defines boundaries as ‘the limits of behaviour which allow a nurse to have a professional relationship with a person in their care. The relationship between a nurse and the person in their care is a professional relationship based on trust, respect and the appropriate use of power. The focus of the relationship is based on meeting the health needs of the person in their care. A nurse crosses a professional boundary when they behave in any way that oversteps their professional role with a person in their care.’

Q: Remember I do not want specific examples. What are your thoughts about this statement? Q: How do you make sense of this? Q: As a nurse what do you think is meant by the term professional boundaries?’

Section 3: What is your understanding of the difference between boundary crossings and boundary violations?

The following information will be presented to the participant on a piece of card: ‘Gutheil and Gabbard, (1993) identified a distinction between the more subtle boundary crossings (acts which involve stepping out of the usual framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client).’

Q: What do you make of this? Q: Without giving examples from your own practice, if you were trying to write it down, theoretically what kind of things do you think would be a boundary crossing?

of 181 Prompt if needed: For example some people may consider providing personal information about themselves to clients, the sharing of food or giving preferential attention to a particular client as boundary crossings. Q (may need to be repeated after prompt): Can you think of some ideas of what theoretically you consider to be boundary crossings? PQ: What makes you consider these a boundary crossing? PQ: How would you recognise a boundary crossing?

Q: Without giving examples from your own practice, if you were trying to write it down, theoretically what kind of things do you think would be a boundary violation? Prompt if needed: For example some people may consider inappropriate physical contact, use of abusive language and becoming overly affectionate as boundary violations. Q (may need to be repeated after prompt): Can you think of some ideas of what theoretically you consider to be boundary violations? PQ: What makes you consider these a boundary violation? PQ: How would you recognise a boundary violation?

Statement to be read out by interviewer: For the next part of the interview I would like us to focus specifically on boundary crossings and not boundary violations. These are considered to be the more subtle, non-exploitative, less serious, or less harmful incidents. Again I do not want you to give me specific examples.

Section 4: What factors do you think may contribute to boundary crossings?

Without giving me details of any incidents, what do you think are the kind of factors that might lead to a boundary crossing? (Interviewer will initially use open ended prompts e.g. PQ: Is there anything else? PQ: Can you tell me anymore?) PQ: Do you think factors to do with the situation might be implicated in a boundary crossing? PQ: Do you think factors to do with the nurse might be implicated in a boundary crossing? PQ: Do you think factors to do with the environment might be implicated in a boundary crossing? PQ: Do you think factors to do with the client might be implicated in a boundary crossing? PQ: Do you think the multiple or changing roles of a nurse might be implicated in a boundary crossing? PQ: What would you do if you believed someone might be likely to/have crossed a boundary? PQ: What would you do if you believed you might be likely to cross a boundary?

of 181 PQ: What would you do if you believed you might have crossed a boundary?

Q: Can you think of anything else that may have informed your opinions of what we have talked about today? PQ: This may be a personal or professional experience, membership of a union etc…

Appendix 14 Email from University of Surrey granting approval of revision to project paperwork

of 181 From: Earl JE Mrs (FAHS Faculty Admin) Sent: 11 May 2015 21:47 To: Harris NJ Ms (PG/R - Psychology) Subject: RE: Revised MRP Paperwork for Ethical Approval

Dear Naomi

Professor Opitz has looked at your amendments and is happy with them. I can therefore confirm that your project can now commence.

Many thanks

Best wishes

Appendix 15 Revised Participant Information Sheet

of 181 13.04.15 Version 2

Participant Information Sheet

Introduction My name is Naomi Harris and I am a trainee clinical psychologist based in the Psychology Department at the University of Surrey, Guildford. This means that I already have a university degree in psychology, and am taking my studies further by now studying on a post-graduate training programme called a PsychD which is a doctorate level qualification. In order for me to study at this post-graduate level, I need to have relevant experience too. I have worked as a research assistant and assistant psychologist alongside people with a variety of needs including adults with learning disabilities.

As part of my training on this PsychD programme to become a clinical psychologist, I have to conduct research.

of 181 Having worked with people with learning disabilities I am aware of the multiple pressures and roles facing the staff who support them. I am therefore researching whether the perceived different roles and responsibilities that nursing staff may have affect the way in which they provide care and maintain their professional boundaries.

I would like to invite you to take part in my study. To help you decide, please read this Information Sheet so that you know what you will be asked to do.

What is the study about? There has been a suggested distinction between the more subtle boundary crossings (acts which involve stepping out of the usual professional framework, but not harming or exploiting the client) and easily identifiable boundary violations (acts which exploit or harm the client; Gutheil and Gabbard, 1993). I am interested in the minor boundary crossings and what may lead to these. One theory is that nursing adults with learning disabilities can be complicated by the fact that providing direct care requires staff to adopt many different roles including; ‘nurse’ administering medication, a ‘carer’ providing personal care, a ‘cook’ preparing meals, a ‘friend’ engaging in social activities such as shopping, a ‘counsellor’ listening to the client and ‘parent’ responding to and motivating the client (Golding, 2001). It has been suggested that switching between and maintaining these different roles may make it difficult to preserve appropriate boundaries and may therefore affect the care provided to the client.

Why have I been invited? The study is open to all nurses registered with the Nursing and Midwifery Council (NMC), currently working in a residential service for adults with learning disabilities half time (18.75 hours a week) or more, with at least 12 months’ experience of this kind of work who have been qualified for one year or more.

Do I have to take part? No, taking part in this study is entirely up to you. To help you decide whether or not to take part, you can talk it over with friends, family, colleagues, etc. You can also contact me for further information and I will be happy to answer any queries. My contact details are at the end.

Even if you agree to take part, you can choose not to answer all of the questions in the interview and you can also stop the interview at any time without giving a reason. You are able to withdraw your data from the study up until the point of analysis, please contact me by Monday 6th July 2015 if you would wish to do this.

What will I have to do? If you decide to take part you will be asked to sign a Consent Form. You would then be asked some demographic questions including when you

of 181 qualified and how long you have been working with people with learning disabilities. You will then be asked to complete an interview which will last approximately 1 hour. In order to cause minimum disruption to your day this usually takes place in a quiet location at your place of work. I will ask you about the things you may do on a day to day basis as a nurse and your thoughts on the different roles you may have with clients. I will also ask what factors you think may contribute to boundary crossings in services for people with learning disabilities however; I do not want you to give me any specific examples or details of actual events or personal experiences. I am interested in understanding your views about why boundaries are crossed rather than knowing about real-life examples of boundary crossings. The interviews will be recorded, but will only be accessed by me and my research supervisors. However, if you tell me something that makes me concerned for your or someone else’s wellbeing I may have to break confidentiality without your consent, and follow local multiagency safeguarding procedures. You will not have to give any names or identifying details about the individuals you are discussing, and all personal information will be kept confidential. How do I agree to take part? You will be asked to sign a Consent Form, to say that you have understood what the research is all about and that you have had the chance to ask me any questions first. The Consent Form also says that all information about you is kept confidential in accordance with the Data Protection Act 1998.

Does what I say get shared with anyone else? Information is shared with my research supervisors. Your name and all personal details about you will be kept anonymous in the report of the study.

Research is always supervised by someone senior, so my research supervisors may have access to the information about you during the research study. As supervision is to help me ensure I am conducting the research properly and according to ethical guidelines, your real name would not be used during these sessions and I would use a fictitious name to identify you. My research supervisors’ names and contact details are at the end.

All audio recordings and information gathered during this research study will be stored securely in a locked filing cabinet at the researcher’s home or at the University of Surrey, in accordance with the Data Protection Act (1998) and will be destroyed after ten years.

Are there any reasons why you may breach confidentiality? If you share information during the interview which leads to sufficient concern about your safety or the safety of others I will discuss these concerns with my research supervisors. I have the same responsibility as any other NHS employee to safeguard people and local multi-agency safeguarding procedures will be followed if necessary.

of 181 What happens when the research study is completed? Research takes time, often years, to complete. By then you may have forgotten about it! Researchers usually like to have their research findings published in relevant journals so that others working in the same field can learn more. I can send you a copy of the final research study if you would like, plus copies of any articles in which the research is published. This piece of research will be completed by December 2016.

Sometimes we present our research findings at meetings (for instance, at service users’ and carers’ support groups or conferences). Again, all personal details about you will be kept confidential (your real name, your age, gender, where you live, etc), and no-one will be able to identify who you are.

What are the benefits of taking part in this research? We cannot promise that the study will help you. However, the research project will allow you to have time and space to reflect on your practice and identify any potential difficulties with your role which may be helpful to go on and discuss with supervisors.

Potentially this research may help to influence future training and the support of staff who work in settings which can be complex and demanding. This research may also help to identify client and staff characteristics in managing these complex relationships. This could lead to an increased understanding of vulnerability factors and how these could be addressed, helping to improve the services offered by the NHS.

Changes to health services are based on the findings of research studies. It is only by researching real people and real issues, can we discover what’s working and what needs improving. Your input to this research into the challenges facing nursing staff who care for adults with learning disabilities is therefore vital.

Are there any downsides of taking part? You may find some of the questions difficult. I am not being intrusive or judgemental by asking these questions as they are needed for my research.

If you find a question too upsetting in any way, you don’t have to answer it. We can also take a break at any time during the interview or decide not to carry on with it. Many people find talking about challenging professional experiences can be helpful, but others may find it brings up difficult emotions. If this happens and you would like some support afterwards, then I can spend some time with you or you may wish to discuss your concerns with your manager, supervisor, or GP. Alternatively you may wish to contact SABP’s confidential Employee Assistance Programme on 0800 919 709. You may also wish to contact the Stress Management Society (http://www.stress.org.uk/) for support in managing stress in the workplace.

of 181 If you have concerns about a risk, malpractice or any other serious concern, you should raise it by telephoning SABP’s Whistleblowing Service on 0800 197 2814.

What if there is a problem? If you have any concerns or complaints about the way you have been dealt with during the study or any aspect of this study you can discuss these with me and I will do my best to answer your questions. If you remain unhappy and wish to complain formally you can do so by contacting my research supervisors.

Has the research been approved by any committee? This study has been reviewed and approved by the IRAS R&D Committee and the Faculty of Arts & Human Sciences at the University of Surrey Ethics Committee to protect your safety, rights, dignity and well-being.

~~~~~~~~~~

I hope I have answered all of your questions about the research study, but please feel free to ask me anything else that I have not covered. My contact details and those of my supervisor are below.

Thank you for taking the time to read this Information Sheet.

of 181 Appendix 16 Revised Consent form

13.04.15 Version 2

Participant Consent Form An exploration of how the variety of nursing roles in services for adults with learning disabilities may impact on maintaining professional boundaries

Name of Researcher: Naomi Harris, Trainee Clinical Psychologist. Please initial box I confirm that I have read and understand the information sheet for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. I understand that I do not have to take part and I am able to leave the study at any time without giving a reason.

of 181 I understand that my interview will be recorded. I understand that only the researcher and research supervisors will have access to this recording, unless a safeguarding issue is identified, and it will be stored in a secure location. I understand that after the interview has finished I am still able to withdraw my data from the research project, if I wish to do this I will contact a member of the research team before Monday 6th July 2015. I understand that if I disclose information that involves concerns about my safety or the safety of others, the researcher will have to break confidentiality, inform their research supervisors or my manager and follow local multiagency safeguarding procedures. This may be without my consent. I understand that the data collected by this research will be looked at by authorised persons from the University of Surrey; this will include supervisors, other researchers and examiners. All will have a duty of confidentiality to me as a research participant. I understand that all audio recordings and information gathered during this research study will be stored securely in a locked filing cabinet at the researcher’s home or at the University of Surrey, in accordance with the Data Protection Act 1998 and will be destroyed after ten years.

I am aware that the findings from this study will be written up for a Doctoral Thesis and may be considered for publication. This may include direct quotes from my interview. All my data will be anonymised and no identifiable data about me or individuals I know will be used. I agree to take part in the above study. Participant Signature: Date:

………………………………………………………….. Researcher Signature: Date:

…………………………………………………………..

of 181 Appendix 17 Data Analysis Procedure

The act of transcribing some of the interviews was part of the process of immersion in the data. Two of the audio recordings were transcribed by the primary researcher, the remaining three were transcribed by a third party who worked in accordance with data protection guidelines. However, all transcripts were read several times to enable the primary researcher to become familiar with the data. This process facilitates the researcher in making sure the participant becomes the focus of the analysis and enter into the participants’ world of understanding and meaning. Following that, initial notes were made on the participants’ transcripts. These notes were

of 181 descriptive, linguistic or conceptual comments made by the reader whilst maintaining a non-judgemental, open position in order to begin to understand how the individual talks about and understands the issue (Hale,

Treharne & Kitas, 2007). The subsequent process of developing emergent themes shifted away from working primarily with the transcript itself and focused more on the notes made by the reader in a process of mapping the notes and looking for interconnections and relationships23. This process was repeated on each transcript in isolation to retain phenomenological focus and to avoid the reader placing preconceptions or anticipating emergent themes in the data which were not there or excluding particular nuances of that individual’s experience. Finally, emergent themes from each case were compared to look for connections across cases and establish common superordinate themes24.

Appendix 18 Extract from coded participant transcript demonstrating process of initial note taking and development of emerging themes

23 See Appendix 14

24 See Appendix 15

of 181 Page 143 of 181 Page 144 of 181 Page 145 of 181 Page 146 of 181 Page 147 of 181 Appendix 19 Extract of table of themes

Superordinate Theme Emerging Quotes (line number) themes I know them therefore I know best Knowing the ‘I used to know all the clients, inside out, [yeah] what likes, dislikes (.) a, clients attitudes, behaviours more to theirs? I don’t know that I can cause I don’t have individual that hands on care’ (21-24) preferences and ‘from an outside perspective you’d think that wasn’t very professional because differences (.) I wasn’t the nurse, he wasn’t the patient but it was because that’s how we’re-, that’s how we built up these relationships, [yeah] you know. And then Participant sometimes at meetings you’ve got to step back and be the formal’ (74-80) feeling they know what ‘it’s knowing peoples, you know, you don’t want-, it’s knowing peoples-, is best for what-, you’ve got to look in the person’s mind as well as your own, you know the service what I mean like, all the time. So it’s that sort of thing’ (342-345) user and that is therefore ‘there’s various ways of being professional. You know, I could come (.) and I acceptable could say, ‘good morning N, we’re going to go out this morning, and you’re all professional and standoffish’. And that would be very professional. ‘I’ve come

of 181 here, give you a hug, I can say come here’, and that, is also professional, dependant on your relationship with that client. So you have your boundaries but, bec-, what-, the behaviour you’ll a, the behaviour you will , undertake with one client is different from the behaviour you’ll undertake with another’ (269- 279)

‘one of the worst things, people say is, ‘you should treat everybody equally’ but you can’t, it’s impossible. You’re bound to be drawn, more to other client than others, you just are, that’s the nature of- you know. [mm] Some clients, over the years, you’ll try your best with but you just can’t get on with them, yeah? Some clients, you hit it off instant, ah your friends you know, and all the rest of it’ (line 495-505). Impact of staff ‘professional ‘It’s (.) sometimes easier, to be more professional with the personality clients you’ve not got a great relationship with, because (.) you do everything by and the book yeah? With the clients you’ve got a brilliant and you- you bend over preferences backwards, and you might, you know…I think your professional boundaries on cross more of the lines with the client’s you know really well, actually than the relationships clients you don’t know really well’ (line 505-515). with service users ‘I mean it is difficult isn’t it really because, it’s almost sometimes like your family, when you’re residential care, but you’ve got to know somewhere that it’s not your family, you know what I mean, and different rules apply’ (366-370) Impact of ‘Just things you’d do with your family, really’ (35-36) staff-service user relationship ‘Sometimes it’s quite difficult because sometimes it’s difficult to stand back I on mean, and you know, I mean (.) sometimes y-, you-, you get so inv- so- so- so- boundaries sort of a, familiar and so relaxed and all that’ (66-69)

‘it’s like a second family. And sometimes, you know, you wonder if you could have done things different, if you’ve been objective enough’ (93-95)

Role ‘sometimes you don’t-, you can’t step back sometimes, it’s very difficult’ extending (111-112) beyond clinical to ‘the main thing I always think with this job, if you, if you put yourself in the social other persons shoes you can’t go wrong’ (994-996) (family and friends)

of 181 Impact of ‘social’ relationship on boundaries

Staff belief that they should treat others how they wish to be treated: ‘friends and family test’

Unique setting and population Roles with The role- you’d be a mentor (pause) for some of the clients you’d be a role learning model (pause). You would-, you would, in a way be a brotherly figure [mm] disability sometimes to a client, or you would be a Fatherly figure sometimes to the client nursing depending on advice etc. Other times you’d just be a-, another, I suppose (pause) a peer, you know what I mean, [mm] just normal really. Depends on the role you were undertaking, the advice you were giving, sometimes it can be very (.) pure care, you know [mm] you’re bathing somebody, shaving somebody and, I mean, you might have to give somebody an- an enema which puts you in a lot of power and there’s a lot of vulnerability so you- [mm] your roles change (46- 59)

‘we always, we were always told in 24/7 services. It’s not about tasks, it’s The about the person, but no matter what way you look at it, it’s still about tasks challenges during certain times of the day’ (786-790) of managing pressures ‘it’s all about tasks and it- it’s the role- where that role changes from, from within being somebody’s friend or mentor to, somebody’s, I don’t know, what’s the learning word, to that person becoming a task you’ve got to [yeah] fulfil that’s where disability things get stressed out really’ (801-806) services ‘it’s frustration, from staff, [mm] you know. It’s always about (.) the client, not, doing, invariably it’s like the client not doing what the staff member wants Under them to do, it’s about that, power relationship’ (613-616) pressure staff’s ‘you get so familiar, it’s- it’s almost not a job, you see as much, I mean in objectificati residential care, especially, every [inaudible] different. Residential care, and we on of service worked with the same plans for 10 years, I did two sleep ins a week so I was the users could (.) I worked 60 hours a week, so I was seeing more of, I mean f- for quite a lead to while I was seeing more of, residential care than, people, than I was my wife boundary and kids’ (84-91) crossings

of 181 The impact ‘it’s different from a, general nursing or whatever because, (pause) unless on staff you’re in residential care generally it might be the same, you know, I only came managing out the same where you’re building up relationships [yeah]. In, in a ward multiple situation or in respite you-, people come in they go home, people come in they roles on go home. And you might know them for many, many years, I ran a respite boundaries service before this for years, but you’ve not got them continuously’ (116-124)

‘you want people to, m-, intermingle, an-, and a home to function as a home, Longevity of but then, your rules suggesting, they can’t intermingle and function as a home’ relationships (190-193) and setting leading to ‘Because the staff who worked in a villa, an institution, they were doing blurring of certain work practices which, were institutionalised, regimented, you know’ professional (638-640) and social relationships with service ‘if somebody’s got their own voice, it’s a lot easier, for them to say, you know users i-, he tried putting a rope around me. But if you’ve not got your own voice then [mm] you’re always, other people especially the more, the more handicapped you are physically, intellectually, you’re relying on others all the time for every personal aspect of your life’ (723-729) Learning disability nursing is ‘I think most boundary crossings would occur, (.) when nobody can, say different what’s happened, I think that’s when people are vulnerable’ (750-752) from other nursing

Managing competing boundaries of a staff work place and service user home

Institutionali sation of staff and the impact this has on interactions with service users

The impact

of 181 of lack of communicati on skills in people with learning disabilities on their vulnerability Staff understanding and management of Use of ‘then you’ve got to tell people to step back (pause) move away, supervision, boundary crossings supervision what’s going on?’ (607-608) to manage difficult ‘you’ve no set protocol in your head of how to go about it sometimes. In situations theory you know what to do but in practice you’ve not done it for so long’ (936- 939) Lack of identificatio n with the usefulness of guidance in managing boundaries

of 181 Appendix 20 Table of relevant super- and sub-ordinate themes with relevant participant quotes

Superordinate Themes Subordinate Themes Quotes Investment and Enmeshment of one’s self and the role Andrew enmeshment of one’s ‘you get so familiar, it’s- it’s almost not a job, you see as much, I mean in residential care, especially, every [inaudible] different. Residential care, and we worked with the same plans for 10 years, I did two sleep ins a week so I was the (.) I worked 60 hours a week, so I was seeing more of, I mean f- for quite a while I was seeing more of, residential care than, people, than I was my wife and kids’ (line 84-91)

Mary ‘people can say, ‘oh your job, you’re so good at it’ but i-, it’s not just a job it’s more than that. We mean more to them than a member of staff’ (line 173-175)

‘you’ve got some people that just think of it as a job, but there’s many of us that think of it much more’ (line 188-190)

‘one persons says um, to me, um, they don’t think that we’re, paid to look after them, you know, so that’s really interesting that in their mind’ (line 158-160)

‘I hear them say that you know they’re happy for their son or for their daughter or their relative to be here because they know that they’re, so much cared for’ (line 142-145)

‘somebody’s Dad said in one meeting, you know, you know, ‘our son most probably shows more affection to J, and some of the team than what he now does for, his Mum and Dad’, because he spends so much time with us’ (line 245-249)

Sarah ‘I have a, sort of an operational role, which is about, the service and keeping people safe, and, quality and moving the services on… I have a clinical role, which is about understanding the

of 181 individuals, it’s understanding things like capacity’ (line 159-164)

‘‘what you’re looking at is, is why is that person not doing it on their own? You know, where is the deficit that someone needs to s-, step in and support that person to do it’ (line 190-194)

Claire ‘I like my job I think that helps a lot and I like the people I work with, I really like the people I work with’ (line 919-921)

‘if I leave here, like five o clock or whatever time, nine tenths I can drive up the road and I feel quite satisfied. I’ve done a good job today’ (line 933-936)

‘at the end of the day it’s a-, has everybody here had a good day? Have they had a good day? You know, and do people smile? Do people laugh?...It keeps me coming back’ (line 942-947).

‘Um, my aim, is to, what do I do honestly…to ensure they have a good quality of life. That’s my aim. As a manager or as a nurse or as a-, a member of staff. It’s to make sure that people have a good quality of life, and that would, um, focus in on, or their health issues cause it’s difficult, to enjoy a social life if you’re not feeling very well, here um, we do focus quite a bit on, or I focus quite a bit on, um, peoples health needs, and having a variety of activities for people to do [mm] and having a good social life and a-, you know, seeing people smile’ (line 4 11-21)

Anna ‘for someone to actually go ahead and do that? Well, they’re not here to do (bubbling laughter) the job that they-. They’re not, you know, they’re not in that job, in the job for the right, purpose, quite frankly’ (line 517-521)

‘is only for the good of the people that you’re supporting at the end of the day and to help them’ (line 634-636)

We’re close like a family Andrew ‘sometimes it’s quite difficult because

of 181 sometimes it’s difficult to stand back I mean, and you know, I mean (.) sometimes y-, you-, you get so inv- so- so- so- sort of a, familiar and so relaxed and all that’ (line 66-69) ’I mean it is difficult isn’t it really because, it’s almost sometimes like your family, when you’re residential care, but you’ve got to know somewhere that it’s not your family, you know what I mean, and different rules apply (line 366- 370)’

‘the main thing I always think with this job, if you, if you put yourself in the other persons shoes you can’t go wrong’ (line 994-996)

‘it’s like a second family. And sometimes, you know, you wonder if you could have done things different, if you’ve been objective enough’ (line 93-95)

‘I mean it is difficult isn’t it really because, it’s almost sometimes like your family, when you’re residential care, but you’ve got to know somewhere that it’s not your family, you know what I mean, and different rules apply’ (line 366- 370)

Mary ‘with the closeness you know, u-, maybe I am like a Mother figure to some of them’ (line 164- 165)

I don’t think they, they, the people don’t see us as nurses. They see us as, as family’ (line 337-338).

‘sometimes you do feel like a parent because you say, actually, you know, please don’t behave like that’ (line 895-897)

Sarah ‘You’re working in an environment and you need to be really clear, because as a friend you might make one decision, as a clinician you might make a different decision’ (line 199-202)

‘I don’t feel I have a parental role because I’m not their parent, and actually, we’re not here to, to judge people, we’re here to support people and enable them’ (line 167-169)

of 181 ‘So, for me, a friend is somebody who does something because they want to spend time with somebody, but that person could so-, practically do it on their own. But in this situation what you’re looking at is, is why is that person not doing it on their own? You know, where is the deficit that someone needs to s-, step in and support that’ (line 187-193)

Claire ‘wouldn’t ever do anything that I wouldn’t expect somebody to do, to one of my relatives’ (line 316-318)

‘I would never do anything that I wouldn’t want somebody to do one of my, to do to one of my relatives’ (line 514-516)

‘I think yeah, and it is morally and I think it’s um, (pause) dare I say it being a Mum as well (line 526-528)

I know they’re not children here but I, often feel that, um, what we do here or, I mean as a manager, I would be more than happy for, my children to be, treated like that [yeah] if need be, m-, an-, id I didn’t then I would do something about it and ne-, a-, straight away’ (line 531-536) …Not that I’m treating them as a-, as children, you know, as I would want my re-, my, family to be looked after (line 539-540).

‘There has to be boundaries, (.) but when we’re talking about human beings I think there’s a lot-, it’s a difficult thing, to, like, it would be-, maybe professional for people to say put your arm round somebody. But if somebody’s upset, or a-, they’ve been in pain, to me i-, that would be, totally appropriate’ (line 307-312)

‘I’ve known those eight people for many, many, many years, even when they lived at the institution, when they were small children, twelve year olds to thirteen years olds, so I wasn’t much older than, some of the people so I’ve know them a long long long time. So for me it’s like, it’s human nature that I’m gonna, have some sort of emotional, although professionally I am nurse and

of 181 I’m here to, care for their health needs and everything else. A-, I’m, my hand on my heart, I couldn’t honestly say that I don’t have any emotional contact’ (line 270-280)

‘somebody being unwell, so physical contact, could be deemed as a boundary crossing. Um, if you’re sitting there and you’ve got your arm round somebody, cause they’re upset, or they’re unwell or something, other people could I feel, could see that as, m-, not appropriate’ (line 552-557)

Anna ‘How would you, you know, if someone was looking after me. What would my expectations be? What would I want? How would I want someone to look after me?’ (line 129-132

‘And I-, and I think that’s when you’re doing anything with anybody, you think, how-, how would you like things to be done, you know?’ (line 122-124)

I think it’s hard sometimes when if you’re what I call, um, a touchy feely person you know, I can go up to my friends…And put your arm round them…But it can be deemed not the thing you should do here with the people that you look after…I suppose that is the hardest part is that you have to, do that switch, you know, to who you are as a person, to who I am as a person, to when you’re coming in to work (line 328-338)’.

‘Someone’s upset, if, i-, you know you have um, maybe someone whooo, is upset for some reason, so, you know the, the saying, ‘a shoulder to cry on’, you get some-, think that in some case can be quite difficult because you can at that instant forget because you’re gonna, you know, maybe comfort them’ (line 483-488).

‘when I take people out, people don’t actually know whether, I’m actually, a carer of-, or whether they’re actually part of the family if you see what I mean so [mm] you don’t want to make, a-, you know, the stigma sort’ (line 104-111)

I know them therefore I know best Andrew ‘I could come (.) and I could say, ‘good morning

of 181 N, we’re going to go out this morning, and you’re all professional and standoffish’. And that would be very professional. ‘I’ve come here, give you a hug, I can say come here’, and that, is also professional, dependant on your relationship with that client. So you have your boundaries but, bec-, what-, the behaviour you’ll a, the behaviour you will, undertake with one client is different from the behaviour you’ll undertake with another’ (line 269-279).

‘one of the worst things, people say is, ‘you should treat everybody equally’ but you can’t, it’s impossibleYou’re bound to be drawn, more to other client than others, you just are, that’s the nature of- you know. [mm] Some clients, over the years, you’ll try your best with but you just can’t get on with them, yeah? Some clients, you hit it off instant, ah your friends you know, and all the rest of it’ (line 495-505).

‘I used to know all the clients, inside out, [yeah] what likes, dislikes (.) a, attitudes, behaviours more to theirs? I don’t know that I can cause I don’t have that hands on care’ (line 21-24)

‘it’s knowing peoples, you know, you don’t want-, it’s knowing peoples-, what-, you’ve got to look in the person’s mind as well as your own, you know what I mean like, all the time. So it’s that sort of thing’ (line 342-345)

I was jumping on [Mr X] and trying to lick his face like a dog and he was fighting me, you’d think what’s going on? But that’s the relationship you build up, and there’s nothing wrong with that, and, in-, in a way you’d say that’s not professional but-, but it is because that’s the relationship you establish with a person it’s different’ (line 295- 302).

‘I mean in residential care...we worked with the same plans for 10 years, I did two sleep ins a week so I was the …I worked 60 hours a week, so I was seeing more of, I mean f- for quite a while I was seeing more of, residential care than, people, than I was my wife and kids you know?...And so you have a, it’s like a second family (line 85-93)’.

of 181 Mary ‘it’s the same like us, that we might get on with some people better than with others and I think it’s the same, for them, you know, um, I think you’d have to be very aware of that’ (line 753-756) if you’re going out with someone and they’re, they’re, they’re quite um, anxious and that when you’re going out, they will often, you know, put their hand in and want a link your arm or something like that, you know…Is that crossing the boundary?...To me it isn’t’ (line 624-632).

Sarah ‘each person’s individual, so it’s about how they, they like you to interact, so it’s about different communication styles’ (line 33-35).

‘when you work in a very person centred way, you get used to working, with individuals, so y-, you know you need to switch, um, and especially with people that are very sort of complex and challenging, you need to be able to switch very quickly’ (line 136-140)

Claire ‘I do think I know where the bou-, where the boundaries are, and the boundaries are appropriate to that individual person’ (line 508-510),

‘necessarily is a professional boundary is, g-, is knowing a person, and knowing then [yeah] what that person, what’s appropriate for that person and what’s not’ (line 353-356)

‘I do think I know where the bou-, where the boundaries are, and the boundaries are appropriate to that individual person’ (line 508-510)

‘I know the people…somebody may like a-, like I say, and like a rude song, they’ll be getting up in the morning or, if I say, ‘Oh come on a-, lazy devil’ today-, you’ve got to get up and do some work today… I know that person and I know that he likes, a-, yeah-, he’d like me to say, he likes that banter cause he banters back’ (line 494-503)

‘[working with somebody who] loves banter, he loves a bit of banter, so if you said to him, and

of 181 most probably going over a professional boundary actually like, ‘Oh yeah, you silly old sod!’ or something like that…but for somebody else I wouldn’t say that because they wouldn’t understand that or they wouldn’t that or they don’t enjoy that banter (line 358-350).

Anna ‘people have preferences whether they’re, you know, I’ve got-, I’ve got preferences how I like things done or-, [mm] you know and it’s kind of you having to know, that’s where the person centred plans coming in so you actually get to know exactly what they prefer’ (line 134-139)

‘It’s to know everything, to actually know as much as you can about that person to, e-, ensure that you know, they’re individuality is actually’ (line 144-146)

Unique setting and Pressures of the environment: tasks vs roles Andrew ‘A lot of people come into- came into residential from institutional settings… you sometimes start-, had to, do things (.) not horribly but you had to shout and, and raise-, just to get things that many people bathed and all that’ (line 623-630)

‘it’s all about tasks and it- it’s the role- where that role changes from, from being somebody’s friend or mentor to, somebody’s, I don’t know, what’s the word, to that person becoming a task you’ve got to [yeah] fulfil that’s where things get stressed out really’ (line 801-806)

‘professional ‘It’s (.) sometimes easier, to be more professional with the clients you’ve not got a great relationship with, because (.) you do everything by the book yeah? With the clients you’ve got a brilliant and you- you bend over backwards, and you might, you know…I think your professional boundaries cross more of the lines with the client’s you know really well, actually than the clients you don’t know really well’ (line 505-515).

‘we always, we were always told in 24/7 services. It’s not about tasks, it’s about the person, but no matter what way you look at it, it’s still about tasks during certain times of the day’ (line

of 181 786-790)

Mary ‘you know, many years ago how we dealt with things is very different [yes] than how we do now’ (line 945-946)

‘staff could be institutionalised’ (line 234)

‘a couple of them like to sit with me in the office, but sometimes I have to say, ‘No’, I need you to go out because I’ve really got to do this paperwork you know, cause you can’t have them like talking to you and that, cause that’s when you could make mistakes’ (line 290-295).

‘I think you know, because, you know, you have so many different roles, that you fulfil now [mm] that I think it’s a lot easier um, for boundaries to get, um, crossed… Um, because even though you’ve got a job description it says this, this, this, well you do, do way more than what’s in your, job description, I mean you know, if you wrote down every single thing, there’d be pages and pages and pages’ (line 991-1000)

‘I’m using this bit as an example but just to show that, how diverse the role, you know could be, you know, one day you might be having to deal with, you know, a-, a-, staff management, you know, there’s been a problem or whatever and then the next minute you’re, you could just be cooking roast dinner in a role as a, a manager’ (line 35-41)

‘I think my role as a manager has changed, drastically, even in the last five to six years it’s changed [mm], you know, we’ve had to take on doing a lot more things that we didn’t have to do before’ (line 50-54)

‘Cause we’ve got a lot of, you know, pressures that we need to finish stuff, you know, but but because you’re in the service and whatever you know, obviously if something happens out there, that’s more important than what your, your paperwork is is dealing with it’ (line 139-144)

Claire ‘sometimes I think, ‘Oh god one day I’m gonna

of 181 make a mistake’. That-, that is one of my big concerns that I do feel sometimes I might make a mistake, not an intentional mistake but a mistake because I’m, jumping into different roles’ (line 123-127)

‘Nobody’s gonna go, ‘Oh never mind T, (whispers) you haven’t had time) [no]. They’re gonna be going, ‘No, we want it…And we want it today’ (line 188-192)

‘it’s a bit like putting out fires [yeah], and then but sometimes the bonfires get a little bit bigger [yeah] and then you feel like you’re struggling to put the bonfires out a little bit’ (line 211-214)

‘I think it’s more to do with the pressures. I don’t think it’s nothing to do with the chopping and changing of the roles, it might be a case of um, how many of those roles, you’re being asked to do. So if you’re asked to do the cooking, washing, cleaning, ironing, polishing, then yes, you’re gonna, aren’t you, be under a lot of pressure ‘(line 792-798)

A different kind of nursing Andrew ‘The role- you’d be a mentor (pause) for some of the clients you’d be a role model (pause). You would-, you would, in a way be a brotherly figure [mm] sometimes to a client, or you would be a Fatherly figure sometimes to the client depending on advice etc. Other times you’d just be a-, another, I suppose (pause) a peer, you know what I mean, [mm] just normal really’ (line 46-53).

‘it’s different from a, general nursing or whatever because, (pause) unless you’re in residential care generally it might be the same, you know, I only came out the same where you’re building up relationships [yeah]. In, in a ward situation or in respite you-, people come in they go home, people come in they go home. And you might know them for many, many years, I ran a respite service before this for years, but you’ve not got them continuously’ (line 116-124)

Mary ‘I think the way that, our roles are and the way that we work um, is different than a general

of 181 nurse…it’s most probably different, than a mental health nurse, when people come in, they’re ill, then they go, back out, say someone with a drug addiction and that. Um, we’re supporting these people day in and day out, you know for, many, many years, [mm] and it is different. I don’t think they, they, the people don’t see us as nurses’ (line 330-338)

‘somebody comes and wants a hug, some days that other person might want a hug and other days, they may not want a hug and, you know, ho-, how hav-, you’ve got to make sure that that’s um, respected you know’ (line 1011-1015).

‘I mean say like if you’re in, um, t-, (pause) somebody comes to you with a learning disability even if they’ve got severe learning disability, they’re unable to communicate and that, they put their hand out to you, you touch them and you hold it, but you could be sitting with them they might want to hold you hand for half an hour. (Pause) But in a general hospital would that happen?’ (line 439-446)

‘I think the way that, our roles are and the way that we work um, is different than a general nurse’ (line 330-331)

‘it’s most probably different, than a mental health nurse, when people come in, they’re ill, then they go, back out, say someone with a drug addiction and that. Um, we’re supporting these people day in and day out, you know for, many, many years, [mm] and it is different. I don’t think they, they, the people don’t see us as nurses. They see us as,as family’ (332-338).

Claire ‘it’s an impossible job I have to say. It’s an impossible job to do within your a-, allocated hours’ (line 888-890)

‘just the pressures and demands of things [mm] expectations, and maybe sometimes I think we expect a lot out of, our band 2’s. We expect them to know a lot [mm] and without maybe some-, sometimes providing the right training’ (line 587- 591)

of 181 ‘I think it’s more to do with the pressures. I don’t think it’s nothing to do with the chopping and changing of the roles, it might be a case of um, how many of those roles, you’re being asked to do. So if you’re asked to do the cooking, washing, cleaning, ironing, polishing, then yes, you’re gonna, aren’t you, be under a lot of pressure’ (line 792-798).

Vulnerability and communication Andrew ‘if somebody’s got their own voice, it’s a lot easier, for them to say, you know i-, he tried putting a rope around me. But if you’ve not got your own voice then you’re always, other people especially the more, the more handicapped you are physically, intellectually, you’re relying on others all the time for every personal aspect of your life’ (line 723-729).

Mary ‘they can’t communicate verbally, they’re showing you a bit of infect-, affectio-, you know, or they want that, you know. You wouldn’t just turn your back on that, cause they’re-, they’re communicating with you’ (line 653-657)… Otherwise y-, you would not have any, any communication with that person would you? (line 662-663)

Sarah ‘It can be around um, their support networks. Whether or not they’ve got a good support network. Whether or not they’ve got an advocate. Whether or not they’ve got family involvement. Their level of understanding. Their level of communication. You know, are they able to tell somebody else? Would they tell somebody else?’ (573-579).

Claire ‘we’ve got to be very aware, you know that we don’t make decisions for people…because I think it could be quite easy for some people, you know, that are you know unable to talk, that people would, just say, this, this, this, this this and they might get it completely wrong’ (342-351),

of 181 Staff understanding Speaking about the unspoken: the risks, the realisation, and the benefits Andrew and management of ‘then you’ve got to tell people to step back boundary crossings (pause) move away, supervision, what’s going on?’ (line 607-608)

Mary ‘What is overstepping the boundary?’ (line 411)

‘It’s a very grey area isn’t it, [yeah] it is really, really, a grey’ (line 502-503)

‘I know that if I’m struggling I can just pick up the phone and say, ‘Oh god, I’m really struggling’. I think that makes a lot of difference’ (line 272- 275)

Sarah ‘I think we’re, we’re very fortunate, I think we get um, we get opportunities, you know we get opportunities to meet clinically, at least once a week and talk through people, [mm] um, and to raise, issues that, you know, we’ve also got um, we’ve got an ethics committee, so if there are issues that we’re concerned about we can take that to ethics and talk about’ (line 749-755).

‘we have supervision, we have s-, you know I have support from um-, senior manager, we have multidisciplinary teamworking. It’s about having those conversations, you know i-, as a nurse if you ever feel that, you’re compromised, that’s what needs to happen’ (line 213-218)

‘I mean, we-, we have good support from above…I know that if I’m struggling I can just pick up the phone and say, ‘Oh god, I’m really struggling’. I think that makes a lot of difference’ (line 269-275).

Claire ‘Um, when you say boundaries, I don’t think I have a boundary’ (line 140-141)

‘I don’t think I had a distinction between the more subtle boundary crossings’ (line 366-367)

‘maybe we don’t even talk about them probably…I’ve not really, I don’t think I’ve ever really talked about it’ (640-655).

of 181 ‘made me think, made me think of some que-, you know, for myself’ (line 966-967)

‘we go on safeguarding training and we talk about safeguarding issues, and the safeguarding issues always seem to be quite, big and the-, don’t ever mention like the subtle, like these-, like what we’re talking about now, like the subtler side of it. Is it appropriate to out your arm round somebody? Is it appropriate to, (.) give somebody a, peck on the cheek or, bear hug them or whatever’ (line 631-638)

‘maybe we don’t even talk about them probably’ (line 640-641)

‘I’ve not really, I don’t think I’ve ever really talked about it’ (line 654-655)

‘I think talking to m-, m-, my peers, like going to, cause you don’t, cause you’re quite isolated… we did used to meet up a lot more. And that-, and that helps you a bit…have a bit of a rant… somebody’s doing your head in…Does make a big difference, but we-, we do do that, a-, um but probably not as much as we probably should’ (line 216-231).

Anna ‘yeah that’s one to think about actually’ (line 203-204)

‘I’m just saying that they’re, they’re both in the same, uh, same lines I think’ (line 432-434)

‘I’m not sure what you mean with a-, with-, with boundaries, you know’ (line 44-45)

‘would that be, then I would say, tha-, um, I don’t know if I-’ (line 25-26),

‘I shall be thinking about this all day today now (laughs) It’s got me thinking [got your cogs turning] actually. Yeah when, it’s not when you start thinking about it [yeah] you know’ (565-568)

‘I think you said what might make people cross boundaries and stuff like that. You know I think,

of 181 you could say sometimes that work pressures could do that’ (line 651-653).

How useful are policies, training and guidelines? Andrew ‘you’ve no set protocol in your head of how to go about it sometimes. In theory you know what to do but in practice you’ve not done it for so long’ (line 936-939)

Mary ‘There’s nothing to say what’s right and wrong. You’ve got your standards that you go by. Obviously you’ve got your professional code of conduct, say like me managing, a service I got the CQC standards [yeah] that I need to meet as a service and that, but nobody tells you how you’re going to meet them [mm]. You know you have to make those decisions and decide in your service, th-, this is what’s applicable to the people that, that, that live here, um, this is their home and this is what’s applicable to them.’ (line 532-541)

‘I mean we all know about safeguarding, what safeguarding is, what abuse is and whatever, we have all the training and everything like that so, yes that’s, you know, quite clear I think, it’s, it’s, quite clear, black and white to say, right if this happens, that’s, abuse and whatever’ (line 576- 581)

‘the mental capacity act [yes] is good, and any decisions that they, they make you know, ummmm, we do go thr-, and use that’ (line 345- 348)

‘it’s not straight as-, forward as what’s written in black and white but you, could do for people, say with learning disability, I th-, I think, each case has to be done on it’s own, um, like-, like for the-, p-, person, looking at that person. Why you might have to do it this way, and not the way, theoretically, it should be done’ (line 1071-1077),

‘you go by your code of practice, but what’s in your code of practice, could be very different that how you would manage it in the, i-, i-, in this type of [yeah] um, home’ (line 457-460).

of 181 Sarah ‘it makes things a little bit more, (.) ,more confused possibly, for people (clears throat) because, it’s, it’s down to individuals definition isn’t it? If you’re stepping out of the usual framework but not harming or exploiting, then, what are you actually doing? So where is that boundary crossing? So-, so what are they actually, inferring to?’ (line 294-300)

‘we have safeguarding, we have training, we have whistle blowing, we have situations in place, um, (pause) any, (coughs) abuse, is clear, you know, it’s very clear about, about the process that’s followed, you know if you witness any abuse or you’re told of any abuse, what you do, so that’s a very clear process, but that very sort of subtle, trying to, persuade people to, do things that maybe the member of staff wants to do, is the bit that really needs to be picked up on, and that’s, that’s where boundaries are becoming blurred so that, you know that’s the bit that’s, sometimes a bit harder to spot’(line 362-374).

‘sometimes people do things because they think they’re doing the right thing for somebody. It’s not always that the intention is bad. It might just be that people are just, unsure about what they should be doing’ (line 394-398)

Claire ‘boundary violations, I think that’s something that, you know like exploits a client. I don’t, (pause) or harms a client (pause) no I can’t think, because to me will all come under safeguarding [yeah] and whistle blowing and all that shenanigans’ (line 480-485).

‘It doesn’t have any, (pause) feeling, don’t know how to put it. It doesn’t have any feeling about it, it feels like a statement that says, aaa-, like a policy [Mhmm] and I think when we’re dealing with people, and individual people, u-, it’s OK to say that, and I understand by going over profesh-, profesh-, professional boundaries, um’ line (260- 266) you go by your code of practice, but what’s in your code of practice, could be very different that

of 181 how you would manage it in the, i-, i-, in this type of um, home’ (line 457-460).

Anna ‘you have the mental capacity act and best interest in [yes, yeah] and I have to say that is a really, yum, you know I-, I’ve worked for years, um, in-, in the house service for the trust and, you see the difference, the-, the things that have come in now which is the-, only better for the person’ (line 215-220).

‘I mean from when you do your training onwards, you know, you know you’ve got the um, you’ve got your code of conduct as well for the (bubbling laughter) NMC for starters, so that, that always uh, you know, um, (pause) that shows you’re professional you know, what’s expected of you as a nurse [mm] as a professional’ (line 197- 203)

of 181 Appendix 21 Credibility Information

of 181 Elliot et al. (1999) suggests seven methods for checking the credibility of qualitative research, the majority of which were incorporated throughout the course of this research. The use of a reflective journal was key in helping the researcher to ‘Own one’s perspective’, demographic information was provided in order to help the reader to ‘Situate the sample’, and quotes were identified and used to illustrate themes as ‘Grounded in examples’.

Elliott et al. (1999) emphasised the importance of the researcher disclosing their own assumptions and values. For me this was an important part of IPA and has been facilitated through regular meetings with peers, supervisors and the use of a reflective journal.

Throughout the process of conducting the interviews and completing the analysis regular meetings were held with academic supervisors to discuss both the process and the content. In addition, qualitative research meetings facilitated by an experienced member of research staff at the university were attended, these meetings provided space for discussion as to the rationale for analysis. Informal supervision was also undertaken with a small group of peers where transcripts and emerging themes were read and discussed, ‘Providing credibility checks’ as suggested by Elliot et al. (1999).

of 181 Appendix 22

Reflective Statement

of 181 In order to reflect on the co-production of knowledge which is inherent in IPA and to reflect on the impact the researcher can have on process I used a reflective diary throughout to maintain a position of reflexivity and acknowledge my subjectivity (Marecek, 2003).

Having worked in community settings for people with learning disabilities as an assistant psychologist, I had regularly spent time in a number of local residential facilities. I experienced the challenges involved in managing my own boundaries with this client group. I had reflected on the increased pressure nursing staff experience both in their physically and emotionally demanding roles but also on the challenges that come with providing care for people with learning disabilities.

I had previously worked as an assistant psychologist in forensic and child services prior to this post and was acutely aware of the importance of boundaries in psychology. Upon taking up my position in this service I often found myself shocked and slightly bemused at the interactions I witnessed between some staff and service users. However, I found these perceptions challenged and my initial clear standing on boundaries called into question as my time in this role progressed. I became more sympathetic and less disapproving of how some staff chose to manage their boundaries with service users and could understand why they were interacting the way they were in offering someone in distress physical comfort through a hug or physical touch.

Throughout this process I was mindful of my status as a Trainee Clinical Psychologist, and the dual position of my role as both a clinician and a researcher. I was conscious during the interviews of responding to the participants in a sensitive way so as to facilitate rapport however, I was aware that these were not therapy sessions.

of 181 I was appreciative of the differences between myself and the participants in this study and attuned to the fact that the majority of participants were older and potentially more experienced than I was. This insecurity of being inexperienced in comparison to the participants may have inhibited me from probing as much as other researchers may have.

Furthermore, I experienced the interview process as uncomfortable at times due to the sensitive nature of the questions, which I was concerned may be perceived as undermining.

However, I adopted a warm, friendly, non-judgemental position and this seemed to help participants to feel at ease, with most reporting they enjoyed the process.

During the interviews and subsequent analysis I was aware of my frustration with participants who either presented as experiencing no or very few challenges in negotiating and managing boundaries with this client group. This at times tested my ability to remain curious and non- judgemental and I wondered whether participants were not revealing their own views and were attempting to present the “party line” as identified by the trust. In discussing my frustration with my supervisors I was able to think about possible motivations for this which enabled me to maintain a non-blaming approach.

I was interested in my reaction to the participants who I felt shared this more empathic position to working with this client group, acknowledging that boundaries can be difficult to navigate. I therefore found it more challenging when trying to immerse myself within the world of a participant who I perceived as holding a “clinical” and sometimes cold standpoint.

I acknowledge my previous experiences with this client group and clinical role as a Trainee

Clinical Psychologist most likely influenced my views in this respect. I was therefore mindful to engage deeply with the data in order challenge these assumptions and was able to use supervision to reflect on these processes.

of 181 Part Three: Summary of Clinical Experience

Clinical Experience: October 2012 – January 2017

The following is a brief overview of the range of clinical experienced whilst completing the clinical psychology training programme.

i) Adult Community Mental Health Team: October 2012 – September 2013

 Clinical assessment and formulation of adults with a range of mental health

presentations including mood disorders, anxiety, complex trauma, OCD and

personality disorder.

of 181  Individual therapy using CBT, Acceptance and Commitment Therapy and Narrative

approaches

 Involvement in therapeutic groups including an Anxiety group and Mindfulness

programme for people with a diagnosis of a mood disorder.

 Working within a multi-disciplinary team through involvement in meetings and

consultation about clinical work.

 Writing clinical letters and clinical reports for families and other professionals.

 Neuropsychological assessments with people of a range of different ages.

ii) Community Mental Health Team for Older People: Sept 2013– March 2014

 Development and facilitation of therapeutic groups for older people including a

cognitive stimulation group for people with a diagnosis of dementia and their carers.

 Assessment and treatment of a range of mental health presentations in older people

within a range of settings including residential settings.

 Neuropsychological assessment of older people with memory difficulties.

 Working within a multi-disciplinary team through involvement in meetings and

consultation about clinical work.

iii) Community Learning Disability Team: March 2014– March 2015 (June-January 2014

Maternity Leave)

 Clinical assessment of people with learning disabilities within a range of settings

including residential settings and day centres.

of 181  Using the Positive Behaviour Support (PBS) model to develop team formulations in

collaboration with staff teams working with clients with a learning disability that

presented with challenging behaviour.

 Individual therapy using CBT approaches adapted for people with learning

disabilities.

 Involvement in multi-disciplinary team meetings.

 Writing clinical letters and clinical reports for families and other professionals.

 Neuropsychological assessment with people with a range of intellectual ability.

iv) Specialist Health Psychology Placement: March– September 2015

 Clinical assessment of clients who have complex health needs which are impacting on

their psychological wellbeing.

 Individual therapy with clients with a range of health and psychological presentations

using Cognitive Behavioural therapy, Mindfulness, Compassion Focused Therapy and

Acceptance and Commitment Therapy.

 Adapting psychological approaches to effectively work with clients from a range of

cultural backgrounds.

 Developing and facilitating therapeutic groups using a Cognitive Behavioural Model

for people living with chronic pain.

 Facilitating psychoeducational workshop as part of the cardiac rehabilitation pathway.

 Offering consultation to staff in relation to psychological approaches.

 Providing supervision to non-clinical client facing staff and volunteers.

v) Tier 3 Child and Adolescent Mental Health Service (CAMHS) Community Team:

August 2016-January 2017 Page 177 of 181  Clinical assessment of children and families with a range of complex presentations

including anxiety, depression, behavioural difficulties, Obsessive Compulsive

Disorder (OCD) and Autism Spectrum Condition (ASC).

 Developing formulations in collaboration with children through the use of creative

approaches to enable engagement and understanding.

 Individual therapy with children using a range of approaches including CBT and

narrative approaches.

 Worked as a member of a family therapy reflecting team.

 Working with interpreters to offer individual and family therapy services.

 Working in collaboration with other professionals within multi-disciplinary team and

schools through involvement in meetings and consultation about clinical work.

 Writing clinical letters and clinical reports for families and other professionals

 Neuropsychological assessments with children of a range of ages.

 Developing and facilitating a workshop for parents for young people with anxiety.

 Service related project developing leaflets for assessment pathway.

Part Four: Table of Assessments Completed During Training

of 181 Year I Assessments

PROGRAMME TITLE OF ASSIGNMENT COMPONENT Fundamentals of Theory Short report of WAIS-IV data and practice and Practice in Clinical administration Psychology (FTPCP) Research –SRRP (Completed in year 3) Practice Case Report Assessment and cognitive behavioural formulation with Page 179 of 181 PROGRAMME TITLE OF ASSIGNMENT COMPONENT a female in her late forties presenting with severe depression and anxiety. Problem Based Learning A reflective account of the problem based learning – Reflective Account exercise “the relationship to change”. Research – Literature Factors associated with the sexual abuse of adults with Review learning disabilities by staff in service settings Adult – Case Report One Cognitive behavioural therapy with a young man in his late teens with developmental difficulties presenting with panic disorder with agoraphobia. Adult – Case Report Two Cognitive behavioural therapy for low self-esteem with a woman in her forties presenting with depression and anxiety. Research – Qualitative Heterosexual males’ attitudes towards same sex Research Project parenting. Research – Major How does the multiplicity of nursing roles in residential Research Project services for adults with learning disabilities impact on Proposal boundary crossings?

Year II Assessments

PROGRAMME TITLE OF ASSESSMENT COMPONENT Research - SRRP (Completed in year 3) Research Research Methods and Statistics test Professional Issues Critically explore the statement that clinical psychology Essay should “move away from psychiatric diagnoses….which have significant conceptual and empirical limitations, and develop alternative approaches which recognise the centrality of the complex range of life experiences…” (Position Statement on the Classification of Behaviour and Experience in Relation to Functional Psychiatric Diagnoses: Time for a Paradigm Shift, BPS, 2013). Problem Based Reflective account of the problem based exercise ‘The Learning – Reflective Stride Family’. Account /Older People – Case A neuropsychological assessment for a gentleman in later Report Three life who is presenting with a deterioration in memory abilities.

of 181 Personal and PPLDG Process Account. Professional Learning Discussion Groups – Process Account People with Learning Supervision of an assistant psychologist completing a Disabilities– Oral joint autism assessment with a gentleman in his late Presentation of Clinical twenties in services for adults’ with learning disabilities. Activity (Case Report Four)

Year III Assessments

PROGRAMME TITLE OF ASSESSMENT COMPONENT Research - SRRP Pituitary patients’ satisfaction with the multidisciplinary pituitary clinic as measured by the Patient Satisfaction Survey

Research – MRP An exploration of how the variety of nursing roles in Portfolio services for adults with learning disabilities may impact on maintaining professional boundaries

Personal and On becoming a clinical psychologist: A retrospective, Professional Learning – developmental, reflective account of the experience of Final Reflective training Account Specialist Health Acceptance and commitment therapy with a man in his Psychology– Case forties with multiple sclerosis presenting with low mood Report Five and anxiety

of 181