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Background Dementia is a syndrome caused by various diseases or injuries that affect the brain. It causes progressive decline in cognitive function resulting in impaired memory, understanding, learning, language and judgement. This is usually accompanied by increasing decline in the individual's ability to regulate their emotions and behaviour. Systematic review: Current generations of Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) people have lived through marked pathologisation of their minority status. LGBTQ+ people report poorer health outcomes and experience social inequalities that increase modifiable risk factors for developing dementia. They are more likely to require residential care than heterosexual peers as they age. This review sought to identify the experiences and care needs of LGBTQ+ people affected by dementia, and those who care for them, and critically appraise the quality of the current evidence base. Empirical: Behaviours that challenge (BtC) such as physical and verbal aggression are displayed by most people living with dementia (PLwD) to some extent. They are associated with poorer quality of life, caregiver burden, institutionalisation, and distress. The Newcastle Model (TNM) is an intensive formulation driven intervention conceptualising BtC as attempts to meet unmet needs. It posits BtC and distress throughout the system reduce when the PLwD's unmet needs are identified, understood and addressed. There is an emerging evidence base demonstrating the effectiveness of this approach. This study aimed to a) evaluate the effectiveness of the routine clinical implementation of TNM in two behaviour support services (BSS-A and BSS-B) and b) compare the effectiveness of standard and shortened delivery versions of TNM. Methods: Systematic review: A systematic search of electronic databases was conducted to identify papers that explored the experiences and care needs of LGBTQ+ people affected by dementia. All designs were included. The methodological quality of papers was assessed. Findings were synthesised using narrative synthesis. Empirical paper: Retrospective analysis of routinely collected clinical data from two specialist behaviour support services (BSS-A and BSS-B) that use TNM was conducted. The Cohen Mansfield Agitation Inventory (CMAI), a measure of BtC, was administered at baseline and post-intervention. Mixed two-way ANOVAs were used to analyse the difference within participants CMAI scores pre and post intervention, between behaviour support services, and shortened and standard delivery formats of TNM. Results Systematic review: 24 papers were included. The sources were heterogeneous, and quality of the included papers varied considerably. The evidence synthesis was informed by the highest quality qualitative papers (n=8) and cross checked against other evidence sources. Three themes were identified: 'Impact of gender and sexual identity on experiences of dementia'; 'Experiences of navigating health and social care systems' and 'Characteristics of culturally competent dementia care'. Empirical Paper: 210 participants were included: 143 in BSS-A and 67 in BSS-B. There was a significant reduction in CMAI scores post intervention (p < .05) in both services, across shortened and standard delivery formats. There was no difference in patient outcome (p > .05) when BSS-A was following the standard TNM protocol (mean delivery duration 23.2 weeks) or the condensed version (mean delivery duration 11.7 weeks). Conclusion Systematic Review: The current evidence base is small and of varying methodological quality. LGBTQ+ people affected by dementia experience unique challenges and have specific care needs that vary within the LGBTQ+ population. Further research is warranted. Empirical Paper: TNM is an effective intervention for reducing BtC in PLwD. The model has ecological validity, demonstrated by two different behaviour support teams outwith that of the TNM developers. A condensed model protocol may promote fidelity to the model and reduce intervention duration whilst maintaining clinical effectiveness.

Background: Previous studies have suggested that paid and family carers’ practical responses, or helping behaviour, can influence the development and maintenance of behaviours that challenge. Therefore, it is important that we understand how best to support carers to respond in a helpful way at times of difficult to manage behaviour. This thesis portfolio comprises of two main sections. The first section involves a systematic review which utilises Weiner’s Attributional Model of Helping Behaviour (1985) as a framework to explore attributions and emotions. These factors are proposed to influence paid and family carers’ willingness to help a child or adult with an intellectual disability (ID) and behaviours that challenge. The second section involves an empirical study which aims to explore the qualitative experiences of family carers looking after an adult relative with an ID and behaviours that challenge. There is a lack of knowledge relating to the experience of family carers, with existing research focusing primarily on the experiences of paid carers, using quantitative methodology. Method: The review involved a thorough search of online databases and reference lists to identify relevant articles, as defined by predetermined eligibility criteria. Fifteen articles were identified, which were synthesised and evaluated using an adapted quality rating scale. The empirical study involved conducting semi-structured interviews with nine family carers about their lived experience of caring for an adult relative with an ID and behaviours that challenge. Interviews were recorded, transcribed and analysed using interpretive phenomenological analysis (IPA). Results: The systematic review found evidence that emotions were associated with helping behaviour, however evidence that emotions acted as a mediating variable between attributions and helping behaviour was inconclusive. There was evidence of an association between carer’s optimism that the behaviour will change and the likelihood of offering help to a person, however optimism for change was not measured across studies. From the empirical study analysis, five subordinate themes emerged from the interviews; ‘searching for the reason’, ‘negative emotions and behaviours that challenge’, ‘tag-team approach – stronger together, ‘limited support’ and ‘impact of caring’. Included in this were seven subthemes. Discussion: Studies included in the review provided, at best, partial support for Weiner’s model and offered limited understanding of carer’s responses to behaviours that challenge. A number of theoretical and methodological limitations of Weiner’s model and of the studies that have explored the model are described. As a result, these findings are not generalisable to real-life caregiving situations, particularly to those looking after an adult relative with an ID. This review found a lack of studies related to family carers, despite this being a population that also provide a significant amount of care and support at times of behaviours that challenge. Study limitations, implications for clinical practice and recommendations for future research are discussed.

Puberty is associated with a period of psychological change concomitant with structural changes in the brain, particularly that of the prefrontal cortex. Recent evidence suggests an endocrinological relationship. In the context of education, the effect of these biopsychological changes on executive function, particularly social cognitive ability and that of behavioural responses to challenges in the school environment, is of particular interest to teachers, who are required to manage behaviour in the classroom, school leaders who devise behaviour management strategies and those in government who decide on policy. In this dissertation, potential associations were explored between plasma concentrations of cortisol and testosterone, physical development, psychological difficulties, social cognitive function and the behaviour of adolescent boys aged between 11 and 16 in the school context. It was conducted through the quantitative analysis of secondary data taken from the United Kingdom’s Avon Longitudinal Study of Parents and Children (ALSPAC) followed by a case study approach for extreme biopsychological outlier cases in the secondary school setting. The research outcomes were not supportive of hypotheses that associate poor psychosocial outcomes with biological data in the general population. However, strong associations exist between biological measures, psychosocial problems and the behaviour of a small number of individuals with extreme biological and psychological values. It was evident that some schools engage in exclusionary practices that may go against Government policy and may even be illegal. It is hoped that dissemination of the project findings and the recommended behaviour interventions will help schools to improve the inclusion and achievement of boys with challenging behaviour.

Background: Stress and burnout is often reported within the ‘human service’ professions. A systematic review aimed to ascertain the prevalence of stress and burnout within clinical psychologists, and the coping strategies utilised by members of this profession. Specifically, the role of clinical psychologists that work with people with intellectual disabilities and behaviour that challenges may, arguably, be particularly challenging, given the risks inherent in behaviour that challenges. Previous work has found that paid and family carers for this population experience substantial levels of stress. However, little is known about the experiences of clinical psychologists who may play a pivotal role in the multi-disciplinary team supporting individuals and their carers. Methods: The systematic review explores the prevalence of stress, burnout and coping in clinical psychologists. An electronic review and hand search of the literature was completed. The quality of all eligible articles was assessed, and themes within the findings were discussed using a narrative synthesis approach. The subsequent empirical article explores the perspectives of 14 female clinical psychologists. Thematic analysis was utilised to derive themes from their interview transcripts. Results: Eight studies met inclusion criteria for the review; findings suggest that a large proportion of clinical psychologists experience symptoms of stress and burnout. Nevertheless, most psychologists also experience high levels of personal achievement in their role. Within the empirical study, two overarching themes were apparent across participants. These included difficult and positive experiences. Participants reported barriers to influencing change and feelings of stress, worry, anxiety, self-doubt and frustration within the role. However, supervision and support from colleagues appeared to moderate difficult emotions. All conveyed a sense of reward within their role. Conclusions: Comparable to other ‘human service’ professionals, clinical psychologists experience symptoms of stress and burnout. With regard to clinical psychologists working with people with intellectual disabilities and behaviour that challenges, it appears that supervision and support from colleagues is key in managing difficult emotions. Based on the findings, provisions that are believed to improve clinical psychologists’ experiences are considered.

Current government statistics show that the fastest growing ages for exclusion in English schools is in children between five and seven years old (DfE, 2013). This trend of young children being excluded for behaviour difficulties can have long term consequences for the children and their families, and has costs to society (Castle & Parsons, 1997). It has also been found that children with challenging behaviour can attract less sympathy than other areas of difficulty (Ofsted, 2010). There is limited research regarding parents' experiences of engaging with school staff when issues are raised about their child's behaviour, particularly when the children are being referred to external agencies. In the present study, three mothers of young children, whose child had been referred to the Educational Psychology Service for challenging behaviour, were interviewed. The method used to examine the interview data is Interpretative Phenomenological Analysis (IPA) as it aims to explore the experiences of the mothers from their interpretation of the situation. Although the mothers had diverse experiences of working with school staff and external professionals with regard to their child's challenging behaviour they provided evidence for five key superordinate themes, which are: development of shared understanding; the child as an individual; the role of being a parent; finding solutions; and social perceptions of behaviour. Implications for theory are discussed in order to further develop a model of working with parents which challenges some the inherent disempowerment and difficulties of managing within the compulsory education system. Implications for practice are explored to consider how school staff and professionals need to develop their communication strategies to enable parents to have access to information, to actively listen to the views of parents, and for parents to be actively involved and work collaboratively in the child's best interests. Further research to identify the relative influence of themes in the present findings would enable targeting of resources to improve the outcomes for young children with challenging behaviour in school.

This thesis explored attachment in individuals with intellectual disability (ID). It investigated the role attachment may have in presenting difficulties such as challenging behaviour, which is an area much researched within other populations. It also considered parental well-being in the early years following diagnosis and the implications this may have for attachment development. Paper 1 describes a systematic review of the literature on parental response and adaptation to a child’ diagnosis of an ID in the early years. The news of a child’s diagnosis can be met with a range of intense emotions however, existing research reports conflicting outcomes regarding the nature of parental reactions and the psychological impact that may result. 12 studies were reviewed with one study demonstrating a strong methodology. The review found that the comparison groups used within studies had an important bearing on how effectual parental response and adaptation appeared. Due to the limited literature available and the methodological variation within the reviewed studies, no clear conclusions could be drawn. Paper 2 describes an empirical study which investigated the contribution of attachment behaviour to engagement in challenging behaviour, whilst considering other variables, in adults with ID. 22 service staff completed assessment questionnaires which examined service user attachment behaviour, level of adaptive ability, challenging behaviour and other variables. The relationships between particular variables were analysed. Results showed that level of adaptive ability was significantly related to attachment behaviour and challenging behaviour. Attachment behaviour was also significantly related to challenging behaviour, particularly social withdrawal and lethargy. However, when adaptive behaviour was controlled for the significance of these relationships disappeared. Therefore attachment behaviour did appear to contribute to challenging behaviour but less significantly than level of adaptive ability. The nature of the interaction between these three key variables is unclear and requires further research. Findings support the implementation of effective attachment based interventions alongside evidence based behavioural strategies. This would be particularly important for those at high risk of attachment and behavioural difficulties, which current and previous findings suggest may be those with ASD and those with lower levels of ability. Paper 3 describes the strengths and limitations of the systematic review and empirical paper. The research process, findings and clinical implications from each of the previous papers are discussed and reflected upon.

Numerous interventions have been identified by research as being effective in reducing the severity of some of the core impairments and challenging behaviours of young people with autistic spectrum disorders (ASDs) and learning difficulties. However, the literature cites significant disparity between what is demonstrated to be effective in supporting young people with ASD and challenging behaviour and the support young people and families actually receive in practice. Paper 1 examines the extent to which evidence-based practice translates into actual practice in special schools in the UK for young people with ASD, severe learning difficulties (SLD) and challenging behaviour. A questionnaire survey targeting 64 special schools in the Midlands was used in conjunction with a series of follow-up semi-structured interviews of school staff. The findings indicate that: 1) the ideal of eclectic provision is potentially undermined by a limited range of training received by staff in evidence-based approaches; 2) mechanisms for supporting staff emotional reactions are inconsistently implemented; 3) limited mechanisms exist for developing staff understandings of challenging behaviour. Furthermore, staff attributions regarding challenging behaviour are pivotal to the consistency and effectiveness of any support programme. Implications and future research directions are discussed.

Introduction: Knowledge and attributions are frequently cited as variables which may help to understand staff responses to challenging behaviour in people with a learning disability. Previous research has found only partial support for Weiner‟s (1980, 1986) model of helping behaviour within a learning disability context. The study developed a clinical definition of „helping behaviour‟, and examined knowledge of challenging behaviour and the combination of attributions from Weiner‟s (1980, 1986) model in predicting staff helping behaviour. In addition the emotion regulation strategies of cognitive reappraisal and expressive suppression were investigated in moderating the relationship between attributions and helping behaviour, developing an overarching framework between attributions, staff stress and positive staff approaches to challenging behaviour. Method: One hundred and seven support staff completed self-report measures of knowledge of the term and management of challenging behaviour, causal attributions, emotion regulation style and behavioural response to challenging behaviour. Results: Knowledge and helpful attributions were significantly correlated with helping behaviour, however, when regressed onto helping behaviour, only knowledge significantly contributed to the variance. No significant correlations were found between emotion regulation styles and attributions. No moderating or mediating effect was found for emotion regulation styles on the relationship between attributions and helping behaviour.

Background: Psychiatric inpatient staff members work with arguably the most challenging service users. However, reference to these challenges often does not go beyond ‘challenging behaviour’, offering no insight into the actual presentation, thus preventing formulation of the perceived challenges, or subsequent interventions. Moreover, studies have shown that staff responses to challenging presentations can impact on both the staff member and the service user. In particular, staff causal attributions have been shown to impact on their therapeutic response (Apel & Bar-Tal, 1996), as well as being associated with staff emotions (Colson et al., 1987). In turn, the emotional response has been found to be associated with coping, both of which have also been found to effect staff behavioural response, as well as staff members’ psychological well-being (Wykes & Whittington, 1998). However, there have been limited studies assessing these relationships with psychiatric inpatient staff. This may be due to the lack of assessment tools developed for this staff group to measure these particular domains. A specifically designed tool would enable consistent assessment to take place to build on our theoretical knowledge of psychiatric inpatient staff members’ perceived challenges, and their responses to them, as well as highlight specific areas within these domains where further staff training and support is required. Aims: The first aim of the study was to explore psychiatric staff’s views on the challenges they faced when working with service users in inpatient settings, their emotional responses, attributions, and coping strategies about those challenges and then to develop a measure which would accurately capture these (the SEACCS). The second aim was to assess the reliability of the new scale as well as explore relationships within the SEACCS. Finally, the third aim was to assess content and face validity, as well as conduct preliminary psychometric investigations of the construct validity of the newly developed measure. Method: The study was conducted using various methods across three phases. In order to generate items for the SEACCS, a systematic review of the relevant literature and semi-structured interviews took place during the first phase. Secondly, the results of Phase I were combined in order to develop and construct the SEACCS. The third phase involved a postal survey of the SEACCS (including re-test), followed by psychometric investigations to scrutinise the items, explore the reliability, and construct validity of the SEACCS.Results: Twenty three studies were included in the systematic review. The results highlighted inconsistent measurement and findings of the domains concerned. Seven multi-disciplinary staff interviews took place. Thematic analysis was used to conduct four separate analyses focusing on each of the research questions. Several themes and sub-themes were found. Themes such as: ‘Engagement’, ‘Attributions of controllability’, and ‘Behavioural responses’. Findings from the review, thematic analyses, and consultation groups (content and face validity) were combined in order to develop the 64 item SEACCS. A total of 76 multi-disciplinary psychiatric inpatient staff members completed the SEACCS, 15 of which completed re-tests. No items were removed following item scrutiny assessments. Preliminary psychometric investigations indicated good reliability, significant relationships across domains within the SEACCS, and partial construct validity with the GHQ-28.Conclusion: The results of the current study provide the first step in the development and construction of a clinically relevant tool that can be used to assess these domains. The methodological limitations and clinical implications are considered, and future directions for research in this area are suggested.

Objectives: There is body of evidence that suggests parents who have a child with a learning disability experience increased stress levels. In addition, research has found a bidirectional relationship between parental stress and child challenging behaviour. Other investigations in this area have found parental stress to be a significant predictor of intervention outcome, and it has been suggested that it should be targeted prior to any child focused intervention. The aim of the current study is to examine the effectiveness of an intervention that targets both parental stress and child challenging behaviour, in families who have a child with a learning disability Design & Method: The study employed a questionnaire based, quantitative, within and between groups methodology. The design included two groups, both parents of children with learning disabilities. Group one, attended three sessions targeting parental stress and three on child challenging behaviour and completed measures on parental stress, mood, coping and child behaviour. Group two, received ‘treatment as normal’ and completed the same measures. Results: Correlations were conducted to look at the relationship between parental stress, coping, mood and child behaviour. The results partially supported a relationship between parental stress, child challenging behaviour and coping. The ANOVA revealed a significant decrease in anxiety scores for the intervention group over time. The results provide some support the effectiveness of the sessions in reducing parental stress but not child challenging behaviour. Conclusions: The findings provide some support for the use of a brief intervention for parents who have a child with a learning disability. The results indicate high levels of stress and child challenging behaviour, which has been linked to increased risk of mental health problems in both child and parents. The current intervention may be appropriative for families with lower levels of stress and behaviour problems, and alternative approaches may be more suitable to families with chronic difficulties.

Section 1. Literature Review. Methodological limitations in the existing research are discussed and future research ideas are proposed to enable a more holistic understanding of direct care staff's experiences.;Section 2. Research Report. The aim was to explore the experiences of staff who have worked with learning disabled patients who also have a diagnosed borderline personality disorder. A free association narrative interview approach was used to analyse the accounts of eight direct care staff (Hollway and Jefferson, 2000). Working with patients who have a learning disability and a diagnosed borderline personality disorder is emotionally demanding. Participants did not appear comfortable in sharing their personal emotional experiences. It was thought this was because these were very painful and staff were concerned they would be criticised for voicing negative feelings about these patients. Staff appeared to manage their painful emotional experiences of their work by using a number of psychological defence mechanisms. These included projecting and expressing their negative feelings onto the organisation, and/or by trying to forget and repress these negative experiences. Organisational factors can be problematic and need to be addressed to reduce the obstacles staff experience in their work with patients who have a learning disability and also a borderline personality disorder. However, when staff comment upon these organisational factors they may also be indirectly expressing the emotional impact these patients are having upon them. Once the organisational factors have been addressed staff may begin to feel more supported and safe enough to explore the painful emotional reactions they have experienced in their work with their patients without the fear of being criticised by others.

This work addresses the question of how nurses care, on a daily basis for people with learning disabilities who engage in self injurious behaviour. It suggests that the nature of the emotional component of the care work undertaken differs from that which the mainstream literature presents. This difference, it is proposed, lies in the necessary length of the relationship between these carers and their clients and in the intractability of the behaviour - self injury - which forms the focus of nursing care. The work explores the frameworks which have been used in caring for and "treating' those with self injurious behaviour in the past and suggests that some of these models resonate through the current care situation. The history of the professional group who constitute the research participants- nurses for people with learning disabilities - also forms a theme in the consideration of where current defence mechanisms may have originated. A grounded theory approach was taken to illuminate the defences which may be in play in this difficult care situation. Carers from two residential health service homes participated in the study, all of whom have continuing contact with people with learning disabilities and self injurious behaviour. The participant group constituted ; nineteen registered nurses for people with learning disabilities; two registered general nurses; and eighteen care assistants. Their ages ranged from nineteen to mid-fifties and their care experience from a few weeks to over twenty years. The data from the first round of unstructured interviews, which asked the question, "How do you feel about your work with people who self injure?" was analysed to form the themes for a second, semi - structured round of interviews. The transcribed data was analysed by means of coding, constant comparison and memoing, which enabled the emergence of central categories. These were organised into: emotional reactions; behaviour; and belief systems. The analysed data was referred back to the participants following data analysis and after data interpretation for verification. The interpretation of the analysed data flowed from both the epistemological stance of the researcher and the methods adopted. The work proposes that nurses continue to care for their clients by holding together and holding apart conflicting feelings and beliefs about their clients and their work. This is undertaken in the context of the concept of themselves as carers which they receive from the care environment which includes the professional and historical issues above. The tension which is inherent in this situation is formed by the ambivalence carers feel about their work, their clients and their role and these processes together constitute the process by which nurses continue to care for this needy client group.