Capturing health-related quality of life in adults withCharcot-Marie-Tooth disease: A digital photovoice investigation

AbstractRationale: CMT is a progressive and debilitating neuromuscular condition which has previously been linked with reduced HRQoL. However, little is known about what adults with CMT think about their HRQoL and the various factors that influence it. An in-depth understanding of experience is essential for valid assessment of HRQoL and appropriate intervention. Aim: The aim of this study was to explore how adults living with CMT understand HRQoL and the factors which influence this. Method: A digital photovoice study was conducted. Eleven participants with varying types of CMT completed an online journal over a 2-week period. Participant were asked to photograph anything which they felt influenced their quality of life (positively, negatively, or neutrally) and to write an accompanying reflective narrative. On average, participants posted 8.36 journal entries (including at least one photo and a narrative reflection) during the 2-week study duration. Findings: Thematic analysis of the textual and visual data identified 6 main themes: “The challenge of the every-day”, “Maintaining independence: adaption, adjustment and support”, “Loss of control and future-orientated anxiety”, “CMT Awareness”, “Threats to identity and self-esteem” and “Resilience and positive growth”. Overall, HRQoL emerged as a complex, individual and multi-faceted construct which is influenced by a range of internal and external factors.Conclusions: Whilst the physical aspects of CMT are inherently challenging, threats to HRQoL also arise from the physical and social environment and the psychological impact of living with a progressive, hereditary condition. Despite much adversity, all participants demonstrated substantial resilience and positive growth which helped them to manage the condition and enhanced their HRQoL. A CMT-specific measure of HRQoL and targeted interventions are now urgently required

Stress and Coping in IAPT Staff: A Mixed Methods Study

Background: Research indicates National Health Service (NHS) mental health workers have particularly high levels of stress. Improving Access to Psychological Therapies (IAPT) is an NHS mental health service with new ways of working. Aims: This exploratory study sought to investigate whether IAPT staff experience high levels of stress and, moreover, identify sources of stress and ways of coping. Method: A mixed methods design was utilised. Forty four IAPT workers completed a quantitative survey in which prevalence of stress (GHQ-12) and dispositional coping styles (COPE) were measured. Qualitative interviews were conducted with 6 staff and analysed using thematic analysis. Results: Almost 30% of IAPT staff reached criteria for minor psychiatric morbidity. Identified stressors included high volume and target orientated work, constant change, resource issues, team dynamics, demands of high stakes in-service training, managing and holding distress and risk, and home-work conflict. Greater engagement in acceptance and active coping styles related to lower stress, whereas focusing on and venting emotions related to higher stress. Conclusions: Stress is an issue for IAPT staff, with newly reported stressors including emphasis on targets and high stakes in-service training. Interventions aimed at promoting acceptance and active coping may be beneficial

The Impact of Student Response Systems on the Learning Experience of Undergraduate Psychology Students

Student response systems (SRS) are hand-held devices or mobile phone polling systems which collate real-time, individual responses to on-screen questions. Previous research examining their role in higher education has highlighted both advantages and disadvantages of their use. This paper explores how different SRS influence the learning experience of psychology students across different levels of their programme. Across two studies, first year students’ experience of using Turningpoint clickers and second year students’ experience of using Poll Everywhere was investigated. Evaluations of both studies revealed that SRS has a number of positive impacts on learning, including enhanced engagement, active learning, peer interaction, and formative feedback. Technical and practical issues emerged as consistent barriers to the use of SRS. Discussion of these findings and the authors’ collective experiences of these technologies are used to provide insight into the way in which SRS can be effectively integrated within undergraduate psychology programmes

Technology Enhanced Learning in Psychology: Current Direction and Perspectives

Contemporary use of digital technologies has rapidly transformed the learning and teaching environment within higher education (Beetham and White, 2013; Jordan, 2013). When used effectively, technology can improve the usefulness and quality of feedback to support learning and create unique opportunities for active, independent learning (Trapp et al., 2011; Higher Education Academy, 2012; UoW, 2015). However, identifying appropriate technology and effectively embedding this within teaching practices can be challenging. Here we outline the way in which Psychology staff at the University of Worcester have used technology to enhance the student learning experience in four key areas: promoting engagement in large groups, enhancing participation in research, teaching via blended learning and fostering a learning community. We hope that sharing our experiences will be of value to colleagues interested in using technology for similar purposes

Cognitive Behavioural Therapy and Acceptance and Commitment Therapy as management strategies for chronic pain

Background: Chronic pain is a debilitating condition that affects the individual in complex ways. However, it is a subjective experience that can be unresponsive to medical treatment, requiring psychological interventions to address its complex and multidimensional nature. CBT and ACT are recommended, yet there is a need to further our understanding on how these management strategies are effective. The present review aims to improve our understanding of the role of CBT and ACT in the management of chronic pain. Method: A literature search was conducted using PsycInfo, Medline, and CINAHL complete, followed by a narrative synthesis and critical appraisal. Findings: CBT and ACT have beneficial effects across several domains of chronic pain, but methodological issues limit our understanding of how this is achieved. Discussion: Future research should focus more on how CBT and ACT lead to positive changes for people with chronic pain. Specifically, there is a need for more detailed explanations of how the interventions are designed. Also, a wider consideration of individual preferences (treatment goals and preferred outcomes) as a desired outcome, and the impact of therapist and group effects

A Phenomenological Approach to Understanding the Impact of Chronic Ear Disease on Wellbeing in Young People: Patient and Carer Perspectives.

Background: Chronic Suppurative Otitis Media (CSOM) is a chronic inflammation of the middle ear which usually occurs in childhood. Symptoms of CSOM include ear pain, an odorous discharge and hearing loss, necessitating significant medical intervention. Previous research has largely focused on functional outcomes of CSOM using quantitative methods. Consequently, the lived experience of this condition from patient and carer perspectives is relatively unknown. The aim of the current study is to qualitatively explore the psychological impact of CSOM on young people. Methods: A qualitative semi-structured interview design is proposed. Up to 10 young people aged 12-18 and their primary caregivers will be recruited from local ENT clinics and interviewed individually. Interviews will consider participants’ experience of the meaning of CSOM, its impact on identity and social and emotional aspects of daily life. Interviewing both patients and primary caregivers about the same phenomena will enable triangulation of the data. All interviews will be audio recorded and transcribed verbatim. Data will be analysed using Interpretative Phenomenological Analysis (IPA). Findings: IPA will be conducted on patient and primary caregiver interview data according to the process outlined in Smith, Larkin and Flowers (2009). Initial findings will be shared with the young people and their primary caregivers. Discussion: The findings from the current study will lead to a greater understanding of CSOM on young people’s wellbeing and quality of life. This knowledge will enable ENT clinics and other medical teams to address the psychosocial support needs of this group and ultimately improve patient care

Improving Adrenaline Autoinjector Adherence: a Psychologically-informed Training for Healthcare Professionals

Background: Clinicians draw on instructional approaches when training patients with anaphylaxis to use adrenaline auto-injectors, but patient use is poor. Psychological barriers to these behaviours exist but are not considered routinely when training patients to use auto-injectors. Health Psychology principles suggest exploring these factors with patients could improve their auto-injector use. Objective: To evaluate the impact of a 90 - minute workshop training clinicians in strategies and techniques for exploring and responding to psychological barriers to auto-injector use with patients. Attendees’ knowledge, confidence and likelihood of using the strategies were expected to improve. Methods: Impact was evaluated using a longitudinal mixed-method design. Twenty-nine clinicians (general and specialist nurses, general practitioners, pharmacists) supporting patients with anaphylaxis in UK hospitals and general practice attended. Self-rated knowledge, confidence and likelihood of using the strategies taught were evaluated online one week before, 1–3 and 6–8 weeks after the workshop. Clinicians were invited for telephone interview after attending to explore qualitatively the workshop impact. Results: Chi-square analyses were significant in most cases (p <.05), with sustained (6–8 weeks) improvements in knowledge, confidence and likelihood of using the strategies taught. Thematic analysis of interview data showed the workshop enhanced attendees’ knowledge of the care pathway, understanding of patient’s experience of anaphylaxis as psychological not purely physical, and altered their communication with this and other patient groups. However, interviewees perceived lack of time and organisational factors as barriers to using the strategies and techniques taught in clinical contexts. Conclusion: Training clinicians in psychologically- informed strategies produce sustained improvements in their confidence and knowledge around patient auto-injector education, and their likelihood of using strategies in clinical practice. Clinical Relevance: Exploring psychological barriers should be part of training patients with anaphylaxis in auto - injector use

Clinical Psychologists Training and Supervising IAPT Therapists to Work with Long-term Conditions and Medically Unexplained Symptoms: A Service Development Project

An IAPT service and a clinical health psychology team piloted a service development providing Step 2 and Step 3 services for individuals with long-term health conditions. Results indicate that such services may be offered with access to specialist training and supervision

‘I haven’t said goodbye to my kids’

People diagnosed with anaphylaxis in adulthood face unique, but largely ignored, psychological challenges. Psychology offers insights for understanding their needs, and the development of interventions to help this growing group live with severe allergies

Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis

Background: Quality of life and well-being are frequently restricted in adults with neuromuscular disorders. As such, identification of appropriate interventions is imperative. Objective: The objective of this paper was to systematically review and critically appraise quantitative studies (RCTs, controlled trials and cohort studies) of psychosocial interventions designed to improve quality of life and well-being in adults with neuromuscular disorders. Method: A systematic review of the published and unpublished literature was conducted. Studies meeting inclusion criteria were appraised using a validated quality assessment tool and results presented in a narrative synthesis. Results: Out of 3,136 studies identified, ten studies met criteria for inclusion within the review. Included studies comprised a range of interventions including: cognitive behavioural therapy, dignity therapy, hypnosis, expressive disclosure, gratitude lists, group psychoeducation and psychologically informed rehabilitation. Five of the interventions were for patients with Amyotrophic Lateral Sclerosis (ALS). The remainder were for patients with post-polio syndrome, muscular dystrophies and mixed disorders, such as Charcot-Marie-Tooth disease, myasthenia gravis and myotonic dystrophy. Across varied interventions and neuromuscular disorders, seven studies reported a short-term beneficial effect of intervention on quality of life and well-being. Whilst such findings are encouraging, widespread issues with the methodological quality of these studies significantly compromised the results. Conclusion: There is no strong evidence that psychosocial interventions improve quality of life and well-being in adults with neuromuscular disorders, due to a paucity of high quality research in this field. Multi-site, randomised controlled trials with active controls, standardised outcome measurement and longer term follow-ups are urgently required