Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Deformation twinning and plastic recovery in Cu/Ag nanolayers under uniaxial tensile straining

Molecular dynamics simulations of nanoscale multilayered Cu/Ag metals have been conducted under uniaxial tensile straining to elucidate the out-of-plane deformation behaviour relevant to tensile spallation experiments. In nanolayers with pristine architectures, plastic dissipation prior to crack nucleation is suppressed owing to the high hydrostatic tensile stress state. The presence of sources for micro-twinning partials, such as micro-cracks or columnar grain boundaries, result in abundant deformation twin lamellae across multiple Cu/Ag interlayers. Plastic recovery is observed during unloading of the nanolayers.     

Predictors of quality of life enjoyment and satisfaction in individuals living with HIV and AIDS in a resource-constrained setting in South Africa

The burden of HIV disease is concentrated in sub-Saharan Africa, particularly in South Africa (SA). Whilst there have been many studies conducted on the biomedical and socio-psychological aspects of HIV and AIDS, insufficient attention has been paid to the quality of life of those infected with the virus. The primary purpose of the study was to determine the predictors of quality of life enjoyment and satisfaction (Q-LES) among individuals infected with HIV. A battery of questionnaires, which included the Hospital Anxiety and Depression Scale (HADS) and the Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q), were administered to 121 participants. Data was analysed using SPSS. Of the total sample (n = 121), 74% were females. The study found that a large proportion (49.5%) of the sample within the age group 25–49 years old experienced psychological distress. Those who were not on antiretroviral treatment (ART) were significantly affected (66%). Psychological distress was significantly prevalent among HIV positive individuals and also the strongest predictor of Q-LES among these individuals.     

Development and Initial Validation of a General Psychological Well-being Scale (GPWS) in an African Context

This study aimed to develop and validate the General Psychological Well-being Scale (GPWS) in an African sample, based on the empirical overlap between hedonic and eudaimonic facets of well-being as found in previous research. The quantitative cross-sectional study was conducted in three phases: secondary data analysis (n = 2005), pilot study (n = 296) and main study (n = 459). The pilot and main study included the GPWS as well as other psychological well-being measures for criterion-related validity. The pilot study yielded satisfactory psychometric properties. The main study yielded a high, reliable Cronbach alpha of.89 and evidence of construct validity. The GPWS appears to be a unidimensional scale suitable for research use with Setswana-speaking people.     

A psychobiographical analysis of Dambudzo Marechera's personal development through his writings

This study applied psychobiography to explore the personal development of Zimbabwean novelist Dambudzo Marechera – and particularly focus on psychological disintegration. For the evidence, we examined primary and secondary works on his life history with special attention to his literary works. Findings indicate that his early writings were autobiographical in nature, chronicling lived poverty, war and violence experiences. Later writings were somehow surrealistic and unstructured, marking a culmination of significant personal disintegration that started in early childhood. Other ancillary biographical evidence suggests self-perceptions as a cult-like figure, and what appears to be a limited social interest.     

The Design and Evaluation of a Hope Enhancement Programme for Adults

The study evaluated the effectiveness of a hope enhancement programme for a group of adults and its impact on general psychological well-being. The intervention programme focused on participants' abilities to set feasible goals, planning ways to reach those goals (pathways) and increase determination and motivation (agency) to reach these goals. The workshop-format programme, consisted of six two-hour sessions conducted over five days. A pre and post-test design included an experimental group (n = 8), control group (n = 8) and ‘chat group’ (n = 8). Findings indicated that the programme increased hope levels of the experimental group as indicated by the Hope Scale and the Hopefulness Subscale of the Hunter Opinions and Personal Expectations Scale. Well-being also improved as indicated by a significant increase in sense of coherence along with a positive change in satisfaction with life. Recommendations for future research were made.     

Psychometric Properties of the Short Self-Regulation Questionnaire (SSRQ) in a South African Context

Self-regulation (SR), an important construct within the psychological well-being context, involves the ability to monitor behaviour, to contrast it with reference values and to introduce adjustments where necessary. A lack of validated measures of SR in the South African context has contributed to the current caveat in our knowledge of the potential importance of this construct. This investigation aimed to establish the utility of the Short Self-Regulation Questionnaire (SSRQ; Carey, Neal & Collins, 2004) in a South African context. This short version of the original Self-Regulation Questionnaire (SRQ; Brown, Miller & Lawendowski, 1999) was completed by a group of 385 undergraduate psychology students. Factor analysis produced 7 factors, all of which showed significant positive correlations with other measures of psychological well-being. This first step toward establishing the importance of SR in non-Western cultures reflected positively on the potential use of the SSRQ in large epidemiological studies.     

Psychological Empowerment,Work Engagement and Turnover Intention: The Role of Leader Relations and Role Clarity in a Financial Institution

This study investigated the relationship between leader-member exchange, role clarity, psychological empowerment, engagement and turnover intention within a financial institution in South Africa. A cross-sectional survey design was used. A convenience sample (N = 278) was taken (males =31%, females =60%; 88% younger than 35 years; 57% with 2–5 years service) from the total population (N = 889). They completed the Leader-Member Exchange Questionnaire (Liden, Wayne, & Stilwell, 1993) Role Conflict and Ambiguity Questionnaire (Rizzo, House, & Lirtzman, 1970), Measuring Empowerment Questionnaire (Spreitzer, 1995), Engagement Questionnaire (May, Gilson, & Harter, 2004) and Intention-to-leave Scale (Sjöberg & Sverke, 2000). A path model was tested with SPSS to determine the relationships of the variables. Furthermore, a theoretical model was tested through the use of structural equation modelling (Arbuckle, 2008). The latent variables included LMX (consisting of two parcels), role clarity (consisting of two parcels), psychological empowerment (consisting of four variables, namely meaning, competence, impact, and self-determination), work engagement (consisting of two parcels), and turnover intention (a manifest variable). Role clarity mediated the relationship between leader-member exchange and psychological empowerment, while psychological empowerment mediated the relationship between role clarity and work engagement as well as turnover intention. Leader-member relations lead to better understanding of roles, while role clarity empowers and engages employees.     

Therapeutic outcomes in the Welsh Government's school‐based counselling strategy: An evaluation

Aims: The purpose of this study was to evaluate the outcomes of school‐based counselling, as delivered in the Welsh Government's School‐based Counselling Strategy, for reducing psychological distress in young people aged 11–18. Method: The study used a quantitative cohort design, comparing levels of distress on either the Young Person's CORE (YP‐CORE) or the Strengths and Difficulties Questionnaire (SDQ) from baseline to endpoint. Data were available on 3613 episodes of counselling, across 42 datasets. Meta‐analytical procedures were used to identify the mean effect size and predictors of outcomes. Results: Within each dataset, counselling was associated with significant reductions in psychological distress, with a mean effect size (d) of 0.93(95% CI = 0.89–0.97) using a fixed effects model and 1.09 (95% CI = 0.97–1.22) using a random effects model. Datasets using the YP‐CORE had larger effect sizes than those using the SDQ, and datasets with more complete response rates had lower outcomes than those with poorer response rates. Conclusion: The results confirm that school‐based counselling, as delivered in the UK, is associated with significant reductions in psychological distress, comparable to adult counselling and psychotherapy services.