An evaluation of the clinical interactions relating to psychological wellbeing and distress between teenagers and young adults (TYAs) diagnosed with cancer and non-psychologist TYA staff

Background: Recently an integrated care model was proposed for the management of psychological distress in adults living with cancer, involving a key worker who was a nurse managing higher levels of psychological distress, under the supervision of a liaison psychiatrist. Our research is focussing on whether a similar model would be feasible and effective for teenagers and young adults living with cancer. Aim: The aim of this study was to describe the competencies related specifically to communication, psychological support and psychological care, that are currently implemented in the care specifically of TYA patients with cancer by TYA-specialised non-psychologist professionals. This enables an understanding of the skills and suitability of TYA professionals to manage psychological distress. Method: Clinical interactions between clinical nurse specialists, youth workers and social workers and TYAs with cancer were audiotaped in two TYA principal treatment centres, with detailed consent, and subjected to a qualitative framework analysis to categorise and evaluate the skills in use and their delivery. Results: Excellent communication skills and specific psychological care skills in use by non-psychologist TYA healthcare professionals were identified. Skills included showing a holistic interest in the patient; Informal screening / assessment of the patient; formal screening for distress; empathic responses to disclosures of distress and integrated resolution of psychological, practical and physical concerns. However, there was no evidence of a holistic assessment of the patient’s distress using a formal assessment tool. Conclusion: A description of a range of skills present (and absent) in practice in a group of specialist professionals working with TYAs with cancer are presented. These will be considered in the development of an integrated model of care for TYA with cancer and distress, including training programmes and supervision structures to support that model

Listening with your eyes: Using pictures and words to explore self-harm

Background: Why do people harm themselves intentionally and sometimes painfully and repeatedly even when they do not wish to die? This thesis explores that question using traditional and non-traditional research approaches. Methods: Firstly, a systematic review was undertaken to identify and undertake a qualitative synthesis of the existing empirical evidence on functions of self-harm, and explore whether particular research approaches concentrate on and identify particular functions of self-harm. Based on those findings, a second study employed a qualitative approach using photo elicitation, a method in which photographs were used as a stimulus and guide within the interview. An adapted polytextual thematic analysis was employed to identify themes within eight participants’ narratives, which consisted of text and images. Finally, a third study also employed a qualitative visual methods approach to explore the content of images posted on blogs tagged as self-harm from two blog management sites, over a five month period. A polytextual analysis of 230 images was conducted. Results: In addition to empirical evidence to support existing functional models of self-harm, the systematic review also found evidence of other functions which have received less attention in the theoretical literature. Findings suggested particular research approaches might be restricting our knowledge of some of the different and nuanced functions self-harm, and might account for the apparent gap between the empirical evidence and extant theoretical models of self-harm. A visual methods approach in the second study also confirmed evidence of some functions which have received less attention in the literature. For example, how people used self-harm positively, as a way of protection and as a language. Similarly, the visual content from the third study portrayed a trajectory of self-harm which was largely experienced by females who used it as a means of escape, self-expression, and as a language to communicate with noncorporeal others. Strengths and limitations of using a visual methods approach are also presented. Conclusions: Employing a novel research approach based on visual methods to access the complex and sometimes ineffable experiences of self-harm proved useful in broadening our understanding of some of the reasons why people self-harm

Give a little RESPECT: Patient and Public Involvement in Research

There are many reasons why patient and public involvement (PPI) is important for health research. This interactive workshop will discuss the value of PPI along with the hurdles and (more importantly) solutions. Examples will be drawn from our experiences of PPI involvement in the RESPECT study, which aims to improve the sexual health of people with serious mental illness

Non-suicidal reasons for self-harm: a systematic review of self-reported accounts

Background: Self-harm is a major public health problem yet current healthcare provision is widely regarded as inadequate. One of the barriers to effective healthcare is the lack of a clear understanding of the functions self-harm may serve for the individual. The aim of this review is to identify first-hand accounts of the reasons for self-harm from the individual's perspective. Method: A systematic review of the literature reporting first-hand accounts of the reasons for self-harm other than intent to die. A thematic analysis and ‘best fit' framework synthesis was undertaken to classify the responses. Results: The most widely researched non-suicidal reasons for self-harm were dealing with distress and exerting interpersonal influence. However, many first-hand accounts included reasons such as self-validation, and self-harm to achieve a personal sense of mastery, which suggests individuals thought there were positive or adaptive functions of the act not based only on its social effects. Limitations: Associations with different sub-population characteristics or with the method of harm were not available from most studies included in the analysis. Conclusions: Our review identified a number of themes that are relatively neglected in discussions about self-harm, which we summarised as self-harm as a positive experience and defining the self. These self-reported “positive” reasons may be important in understanding and responding especially to repeated acts of self-harm

Using photo-elicitation to understand reasons for repeated self-harm: a qualitative study

Background: Reasons for self-harm are not well understood. One of the reasons for this is that first-hand accounts are usually elicited using traditional interview and questionnaire methods. This study aims to explore the acceptability of using an approach (photo-elicitation) that does not rely on solely verbal or written techniques, and to make a preliminary assessment of whether people can usefully employ images to support a discussion about the reasons why they self-harm. Method: Interviews with eight participants using photo elicitation, a method in which photographs produced by the participant are used as a stimulus and guide within the interview. Results: Participants responded positively to using images to support a discussion about their self-harm and readily incorporated images in the interview. Four main themes were identified representing negative and positive or adaptive purposes of self-harm: self-harm as a response to distress, self-harm to achieve mastery, self-harm as protective and self-harm as a language or form of communication. Conclusions: Employing this novel approach was useful in broadening our understanding of self-harm

Effect of Deutetrabenazine on Chorea Among Patients With Huntington Disease A Randomized Clinical Trial

Importance Deutetrabenazine is a novel molecule containing deuterium, which attenuates CYP2D6 metabolism and increases active metabolite half-lives and may therefore lead to stable systemic exposure while preserving key pharmacological activity. Objective To evaluate efficacy and safety of deutetrabenazine treatment to control chorea associated with Huntington disease. Design, Setting, and Participants Ninety ambulatory adults diagnosed with manifest Huntington disease and a baseline total maximal chorea score of 8 or higher (range, 0-28; lower score indicates less chorea) were enrolled from August 2013 to August 2014 and randomized to receive deutetrabenazine (n = 45) or placebo (n = 45) in a double-blind fashion at 34 Huntington Study Group sites. Interventions Deutetrabenazine or placebo was titrated to optimal dose level over 8 weeks and maintained for 4 weeks, followed by a 1-week washout. Main Outcomes and Measures Primary end point was the total maximal chorea score change from baseline (the average of values from the screening and day-0 visits) to maintenance therapy (the average of values from the week 9 and 12 visits) obtained by in-person visits. This study was designed to detect a 2.7-unit treatment difference in scores. The secondary end points, assessed hierarchically, were the proportion of patients who achieved treatment success on the Patient Global Impression of Change (PGIC) and on the Clinical Global Impression of Change (CGIC), the change in 36-Item Short Form– physical functioning subscale score (SF-36), and the change in the Berg Balance Test. Results Ninety patients with Huntington disease (mean age, 53.7 years; 40 women [44.4%]) were enrolled. In the deutetrabenazine group, the mean total maximal chorea scores improved from 12.1 (95% CI, 11.2-12.9) to 7.7 (95% CI, 6.5-8.9), whereas in the placebo group, scores improved from 13.2 (95% CI, 12.2-14.3) to 11.3 (95% CI, 10.0-12.5); the mean between-group difference was –2.5 units (95% CI, –3.7 to –1.3) (P < .001). Treatment success, as measured by the PGIC, occurred in 23 patients (51%) in the deutetrabenazine group vs 9 (20%) in the placebo group (P = .002). As measured by the CGIC, treatment success occurred in 19 patients (42%) in the deutetrabenazine group vs 6 (13%) in the placebo group (P = .002). In the deutetrabenazine group, the mean SF-36 physical functioning subscale scores decreased from 47.5 (95% CI, 44.3-50.8) to 47.4 (44.3-50.5), whereas in the placebo group, scores decreased from 43.2 (95% CI, 40.2-46.3) to 39.9 (95% CI, 36.2-43.6), for a treatment benefit of 4.3 (95% CI, 0.4 to 8.3) (P = .03). There was no difference between groups (mean difference of 1.0 unit; 95% CI, –0.3 to 2.3; P = .14), for improvement in the Berg Balance Test, which improved by 2.2 units (95% CI, 1.3-3.1) in the deutetrabenazine group and by 1.3 units (95% CI, 0.4-2.2) in the placebo group. Adverse event rates were similar for deutetrabenazine and placebo, including depression, anxiety, and akathisia. Conclusions and Relevance Among patients with chorea associated with Huntington disease, the use of deutetrabenazine compared with placebo resulted in improved motor signs at 12 weeks. Further research is needed to assess the clinical importance of the effect size and to determine longer-term efficacy and safety

Using a Camera to Explore Self-harm

A participant with personal experience of self-harm took a photograph of stinging nettles to help describe their motivation(s) to self-harm. The image depicts the physical sensations experienced prior to self-harm, and how self-harm can serve as a form of physical pain relief