Emotional processing and communication in people with Huntington's disease:a mixed methods inquiry

Huntington's disease (HD) is a progressive neurodegenerative disorder caused by the inheritance of the mutation of a protein called Huntingtin. Its typical symptoms include motor impairments, cognitive deterioration, and significant psychological difficulties. All these impairments can have a significant effect on the communication of affected individuals, including nonverbal components such as emotional processing. However, the current literature on HD appears to be particularly characterised by a medical approach to the topic, with little evidence from studies adopting a psychological perspective. Thus, the overarching aim of the current thesis was to investigate the impact of Huntington's disease on the emotional processing and communication of affected individuals from a health psychology perspective and with the adoption of a mixed-methods approach. After an initial scoping review of the literature, a qualitative study was conducted in the first phase of the research project, with the aim of exploring the perspectives on communication of people with symptomatic HD. In the second phase, two quantitative investigations were carried out, specifically addressing how HD affects emotional processing - in particular emotion regulation and recognition - in symptomatic and presymptomatic individuals. The results showed that, although emotional processing and communication are affected by HD, the achievement of feelings of control, better emotion regulation, effective medication regimes, and close interpersonal relationships can play a pivotal role in alleviating the burden of the disease. In addition, emotion regulation and emotional body language (EBL) recognition abilities were both impaired in symptomatic individuals, while evidence with presymptomatic people suggested a relative preservation of these skills. In both cases, no significant relationship was found between these abilities. However, the relationship between depressive symptoms and specific elements of emotion regulation such as emotional awareness should be further explored in presymptomatic participants, as it may play a potential precursory role in the development of emotion recognition impairments in fully symptomatic individuals. The implications of the findings for theory and practice are discussed, and possible directions for future research are provided

The relationship between perceived control, depression, and medication adherence in people with Parkinson’s Disease

Background: Parkinson’s is an incurable neurodegenerative condition typically treated with highly complex medication regimens. However, medication adherence in people with Parkinson’s (PwP) is problematic, with up to 70% of PwP reported non-adherent to prescribed medication regimens. Research suggests medication adherence in PwP may be influenced by psychological factors, such as depression and subconstructs of perceived control. Methods: This thesis portfolio aimed to address some of the gaps in the current literature around perceived control, depression, and medication adherence in PwP. First, a scoping review was carried out to identify types of psychosocial interventions for PwP which measured perceptions of control as an outcome. Second, an online cross-sectional survey was conducted to investigate the role of perceived control as a predictor of medication adherence in 1210 PwP from 15 English-speaking countries. Results: The scoping review identified 12 eligible studies investigating four categories of psychosocial interventions. Mixed findings were found for cognitive, educational, and physical interventions, while positive evidence was observed for a mindfulness-based lifestyle programme. In the survey, perceived control accounted for slightly greater variance in medication adherence than medication variables, and internal and external dimensions of locus of control emerged as independent predictors. Unexpectedly, depression shared no significant relationship with medication adherence. Conclusions: In PwP, perceived control may exert a more significant impact on medication adherence than depression or medication-related factors. However, the literature on psychosocial interventions affecting perceived control in this population is still in its infancy. Directions for future research and implications for clinical psychology practice are discussed

'I have a feeling I can't speak to anybody':A thematic analysis of communication perspectives in people with Huntington's disease

Objectives: This study explored the perspectives of people affected by Huntington’s disease (HD) on their own communicative abilities. Methods: Qualitative semi-structured interviews were carried out with eight people with early HD. The data were analysed through thematic analysis. Results: Four themes were constructed from the data, characterised by the following core topics: How HD directs and mediates communication; Regaining control to improve communication; Emotional outflows into communication and the struggle for separation; Sheltering as a way to boost confidence in communication. Discussion: Separating patients’ identity as individuals from that of a person with a disease can help increase communicative control. Consistent with the general theory and model of self-regulation, patients should be allowed a wider range of choices to regain control over communication. Achieving better emotion regulation is of paramount importance for communication, and factors such as medication regimes, relationships and existing coping strategies should be strengthened. Consistent with previous research, feelings of safety and the idea of a safe place (‘sheltering’) represent an effective coping mechanism. Practical implications include the refinement of communication and relationships among clinicians, caregivers, and patients with HD by considering a wider range of medical, psychological and socio-environmental factors

Perceived control as a predictor of medication adherence in people with Parkinson’s: A large-scale cross-sectional study

Purpose Medication adherence is a multi-faceted construct associated with several positive consequences in people with chronic conditions. However, non-adherence currently represents a major issue in Parkinson’s, potentially due to low perceptions of control. This study investigated the predictive ability of several aspects of perceived control on adherence in people with Parkinson’s, while accounting for previously established predictors such as depression and medication variables. Materials and Methods An online cross-sectional survey was carried out with 1210 adults with Parkinson’s from 15 English-speaking countries. Demographic and clinical questions, as well as measures of depression, aspects of perceived control, and medication adherence were included. Pearson’s correlations and a 4-block hierarchical regression analysis were performed to assess the relationship between the variables. Results Perceived control explained a slightly higher amount of variance in medication adherence compared to medication variables when entered in the last block. Unexpectedly, depression was not significantly related with adherence. Internal locus of control was an independent negative predictor of adherence, while external dimensions of locus of control emerged as independent positive predictors. Conclusions In people with Parkinson’s, perceptions of control may have a larger impact on adherence compared to medication variables. Implications for clinical practice and future research are discussed. Implications for Rehabilitation - Perceived control and depression are considered important constructs for medication adherence in Parkinson’s, which in turn is often problematic for affected individuals. - The specific predictive value of different aspects of perceived control on medication adherence in Parkinson’s is currently unclear. - This large-scale study found that perceptions of control may have a larger impact on adherence compared to medication variables, while depression was unrelated to it. - A need for psychologically-informed interventions, person-centred approaches to medication management, and Parkinson-specific measures of adherence are highlighted

The impact of clinical training changes on self-rated competency and confidence in neuropsychology: a survey of UEA-trained clinical psychologists in East Anglia

A Competency Framework, produced by the British Psychological Society Division of Neuropsychology, specifies the underpinning neuropsychological knowledge and skills required for different levels of practice. In 2016, the Doctoral Programme in Clinical Psychology at the University of East Anglia (UEA) introduced changes to align its neuropsychology teaching to the Competency Framework. This report illustrates a pilot evaluation of the impact of such changes on the self-rated neuropsychological competency and confidence of UEA-trained clinical psychologists in East Anglia using a bespoke online survey. Based on 76 respondents, the results highlighted promising effects of the changes, with post-2016 participants showing higher levels of self-rated competency and confidence in neuropsychology than pre-2016 participants. However, the discrepancy in sample size between pre- and post-2016 groups and a number of other caveats and limitations should be considered. Additional iterations of the survey, involving future cohorts following qualification, are needed to confirm these preliminary findings

Online emotion regulation for an adolescent with misophonia: A case study

Misophonia is a novel diagnosis characterised by extreme and uncontrollable autonomic reactions and emotional responses to selective auditory stimuli, which can significantly impair an individual’s daily life. No agreed diagnostic criteria are currently available for misophonia, and any therapeutic guidance is yet to be formalised. In this case study, a tailored psychological intervention based on the cognitive model and developed around emotion regulation principles and techniques was adopted to treat misophonia in a 16-year-old female from the United Kingdom. The treatment lasted for 15 weeks and was delivered online due to the ongoing COVID-19 social distancing regulations. The results showed that the intervention was feasible and acceptable, and effective at reducing levels of misophonic symptoms from severe to moderate/mild while also improving emotion dysregulation and overall anxiety and depression. Particular improvements were observed for specific skills such as acceptance and awareness of emotional responses and increased access to emotion regulation strategies. These findings also translated into a number of reported daily life improvements in the client’s psychological and social well-being. As the current evidence base on misophonia continues to develop, more methodologically rigorous research is warranted to build on the present findings and inform the adoption of further psychotherapeutic approaches to treat this new condition

Psychosocial interventions affecting global perceptions of control in people with Parkinson’s disease: a scoping review

Perceived control is an important construct for the psychological well-being of people affected by chronic conditions, and higher perceived control is associated with better outcomes. Psychosocial interventions have been trialled in these populations to improve both global and specific perceptions of control. However, most interventions involving people with Parkinson's have focused on single-domain forms of control, while those addressing global perceived control are yet to be reviewed. This study aimed to identify and map the types of psychosocial interventions in individuals with Parkinson's which have included forms of global perceived control as an outcome. Scoping review based on a search across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate. From an initial return of 4388 citations, 12 citations were eventually included. These consisted of 8 quantitative and 4 qualitative studies, and covered 4 overarching categories of psychosocial interventions. Mixed results were found for cognitive, educational, and physical interventions, while a randomised controlled trial on mindfulness-based lifestyle programme showed more preliminary positive evidence. Further rigorous research is required on the topic to build on these preliminary findings. In the meantime, clinicians may need to consider programmes which proved effective with populations similar to people with Parkinson's.IMPLICATIONS FOR REHABILITATIONPerceived control is a psychological construct important for people with chronic illnesses, which can be targeted by psychosocial interventions.This article reviewed psychosocial interventions targeting global forms of perceived control in Parkinson's.Mixed results were reported for the cognitive, educational, and physical interventions identified, while a randomised controlled trial on a mindfulness-based lifestyle programme showed more promising evidence.In the meantime, clinicians may need to consider programmes found to be effective with people with similar conditions to Parkinson's

“It’s working together with what you’ve got”: Healthcare professionals’ experiences of working with people with combined intellectual disability and personality disorder diagnoses

Background: People with intellectual disability often receive diagnoses which may complicate their clinical care. Among these, personality disorder diagnoses are still considered contentious. Little is also known on the perspectives of staff caring for people with intellectual disability who have also received a personality disorder diagnosis. Methods: Three focus groups were carried out to explore 15 healthcare professionals’ subjective experiences of working with people with intellectual disability who also have a recorded additional diagnosis of personality disorder. Data were analysed through thematic analysis. Findings: Four overarching themes were identified: a) diagnostic issues and the need for person-centred approaches; b) challenges and adjustments to working with combined intellectual disability and PD diagnoses; c) the importance of multidisciplinary team training, support, and cohesion; d) provision issues and barriers to service access. Conclusions: The themes are outlined in depth and a number of implications for clinical management and service improvement are discussed

H33 A novel biopsychosocial formulation model to conceptualise psychological distress among people with Huntington’s disease

Background Psychological distress is common among people with Huntington’s disease (HD), including gene expansion carriers who have not yet received a clinical diagnosis. In later stages, people with HD (pwHD) can sometimes express their psychological distress with aggressive, risky, or disinhibited behaviours which others might find challenging. Clinical formulation is an approach used by mental health professionals to help understand the various factors that contribute to psychological distress. While formulations have been previously applied to other neurodegenerative diseases, a specific framework has not yet been developed for HD. Aims The aim was to develop a new clinical formulation model for understanding distress among pwHD based on a biopsychosocial framework. The theoretical rationale for the model, and potential practical applications to HD care, will be discussed. Methods/Technique The formulation model was conceptualised by UK-based clinical psychologists specialising in HD. It uses a temporal approach and draws upon several biological, psychological, and social/environmental factors that can contribute to distress. These include key elements regarding life story, HD experience and narratives, current presentations (e.g., triad of symptoms, social circumstances), as well as anticipatory cognitions and emotions about the future. Results/Outcome Following its development, the model has been successfully implemented at a specialist UK HD service, both in multi-disciplinary team meetings and in clinical sessions with pwHD and/or caregivers. Conclusions This clinical formulation model offers an individualised, evidence-based framework to help enhance the psychological understanding of distress in HD. Its successful implementation shows the potential to improve person-centred care approaches for affected individuals worldwide.</p