Beliefs about sharing illness experiences: Development of a scale and relationship with symptoms of fibromyalgia.

OBJECTIVES: The aim of the current research was to evaluate, in people with fibromyalgia, the extent to which beliefs about sharing illness experiences are associated with functioning and distress, and to explore the mediating role of illness behaviours. A new scale was designed to address this. DESIGN: The Beliefs about Sharing Illness Experiences (BASIE) scale was developed, and initial tests of reliability and validity were conducted. A cross-sectional design was used to determine relationships, including mediation analyses. METHODS: Individuals with fibromyalgia (n = 147) and a comparison group of individuals without fibromyalgia (n = 47) completed questionnaires online. Construct validity was assessed by comparing these two groups. Convergent validity was assessed through correlations with the BASIE and measures of support-seeking and self-sacrifice. Correlation analyses were used to determine relationships with illness behaviours and outcome measures (distress and global impact). Mediation analyses were used to test the indirect effects of illness behaviours. RESULTS: The BASIE was correlated with expected convergent measures and had good internal consistency (Cronbach's alpha = .939). Individuals with fibromyalgia had significantly higher scores than the comparison group. There was a direct relationship between BASIE scores and outcomes, in terms of functioning and distress. The relationship between BASIE scores and functioning was partially mediated by personal/emotional support-seeking and all-or-nothing behaviours, and not by symptom-related support-seeking or limiting behaviours. CONCLUSION: Beliefs about sharing illness experiences may be a key factor in maintaining cycles of distress and symptoms in people with fibromyalgia, together with all-or-nothing behaviours and personal/emotional support-seeking. Statement of contribution What is already known on this subject? Maintenance of fibromyalgia is likely to be a complex autopoietic relationship including symptoms, beliefs, behaviours, and emotions. Research suggests possible roles of beliefs about unacceptability of emotions and beliefs around interpersonal situations, and behaviours in social situations as well as limiting and all-or-nothing behaviours. People with fibromyalgia may experience stigma, sometimes resulting in secrecy around their condition and symptoms. What does this study add? The BASIE is a 21-item questionnaire that measures beliefs around sharing illness experiences. Individuals with fibromyalgia hold stronger beliefs around unacceptability of sharing illness experiences. These beliefs are related to functioning and distress, partially mediated by illness behaviours.

Investigating the role of beliefs about emotions, emotional suppression and distress within a pain management programme for fibromyalgia.

INTRODUCTION: This study aims to explore the relationships between beliefs about emotions, emotional suppression, distress and global impact (i.e. the extent to which a patient's symptoms impact their life) in a longitudinal design with patients who are taking part in a pain management programme. METHODS: A total of 40 participants with fibromyalgia took part in pain management programmes at multiple sites as part of their usual care in the National Health Service. Measures of beliefs about the unacceptability of experiencing and expressing emotions, emotional suppression, distress and global impact were completed before and after the programmes. RESULTS: Beliefs about emotions significantly reduced following treatment, but emotional suppression did not. Changes in beliefs about emotion correlated with changes in emotional suppression. Changes in distress were related to changes in suppression and the relationship between global impact and beliefs about emotions was approaching significance. CONCLUSION: Emotional suppression and beliefs about emotions may play a role in the improvement in distress following treatment. However, future research should examine these variables as mediators of the effect of treatment compared to waitlist controls in a larger sample.

Is Cognitive Behavioural Therapy focusing on Depression and Anxiety Effective for People with Long-Term Physical Health Conditions? A Controlled Trial in the Context of Type 2 Diabetes Mellitus.

BACKGROUND: It is unclear as to the extent to which psychological interventions focusing specifically on depression and anxiety are helpful for people with physical health conditions, with respect to mood and condition management. AIMS: To evaluate the effectiveness of a modified evidence-based psychological intervention focusing on depression and anxiety for people with type 2 diabetes mellitus (T2DM), compared with a control intervention. METHOD: Clients (n = 140) who experienced mild to moderate depression and/or anxiety and had a diagnosis of T2DM were allocated to either diabetes specific treatment condition (n = 52) or standard intervention (control condition, n = 63), which were run in parallel. Each condition received a group intervention offering evidence-based psychological interventions for people with depression and anxiety. Those running the diabetes specific treatment group received additional training and supervision on working with people with T2DM from a clinical health psychologist and a general practitioner. The diabetes specific treatment intervention helped patients to link mood with management of T2DM. RESULTS: Both conditions demonstrated improvements in primary outcomes of mood and secondary outcome of adjustment [95% confidence interval (CI) between 0.25 and 5.06; p < 0.05 in all cases]. The diabetes specific treatment condition also demonstrated improvements in secondary outcomes of self-report management of T2DM for diet, checking blood and checking feet, compared with the control condition (95% CIs between 0.04 and 2.05; p < 0.05 in all cases) and in glycaemic control (95% CI: 0.67 to 8.22). The findings also suggested a non-significant reduction in NHS resources in the diabetes specific treatment condition. These changes appeared to be maintained in the diabetes specific treatment condition. CONCLUSIONS: It is concluded that a modified intervention, with input from specialist services, may offer additional benefits in terms of improved diabetic self-management and tighter glycaemic control.

A systematic review of psychological correlates of HIV testing intention.

Undiagnosed HIV infection is associated with onward HIV transmission and delays in accessing HIV care and treatment. As a significant proportion of HIV tests are self-initiated, it is important to assess correlates of the intention to test for HIV. Psychological correlates of HIV testing intention are more likely to be the feasible target of interventions than structural determinants. A systematic review of psychological correlates of HIV testing intention was conducted. Twenty studies were included in the review, covering a range of populations and geographical regions. The most commonly assessed variables were HIV risk perception and HIV knowledge rather than HIV test-specific psychological factors. There was evidence that HIV risk perception and pro-testing attitudes were consistently associated with HIV testing intention across a number of studies. There is a need for longitudinal designs, including experimental studies, allowing for more confident casual inferences to be made. Theoretical, research and practice implications are outlined.

'Isn't it ironic?' Beliefs about the unacceptability of emotions and emotional suppression relate to worse outcomes in fibromyalgia.

Beliefs about the unacceptability of experiencing and expressing emotions have been found to be related to worse outcomes in people with persistent physical symptoms. The current study tested mediation models regarding emotional suppression, beliefs about emotions, support-seeking and global impact in fibromyalgia. One hundred eighty-two participants took part in an online questionnaire testing potential mechanisms of this relationship using mediation analysis. The model tested emotional suppression and affective distress as serial mediators of the relationship between beliefs about emotions and global impact. In parallel paths, two forms of support-seeking were tested (personal/emotional and symptom-related support-seeking) as mediators. Emotional suppression and affective distress significantly serially mediated the relationship between beliefs about emotions and global impact. Neither support-seeking variable significantly mediated this relationship. Results indicate a potential mechanism through which beliefs about emotions and global impact might relate which might provide a theoretical basis for future research on treatments for fibromyalgia.

HIV Disclosure Anxiety: A Systematic Review and Theoretical Synthesis.

HIV disclosure can help people living with HIV to access social support, enhance antiretroviral adherence, facilitate engagement in care and reduce unprotected sex. Given interpersonal risks associated with HIV disclosure, however, anxiety about sharing one's status is common. To investigate anxiety about HIV disclosure in HIV-positive populations, we conducted a systematic review of qualitative and quantitative studies, with 119 studies included. The review demonstrated that perceived interpersonal risks are associated with HIV disclosure and outlined evidence of associations with anxiety, fear and worry. We present a new cognitive model of HIV disclosure anxiety adapted from clinical theories of health and social anxiety, consistent with evidence from the review. The model attempts to explain the development and maintenance of anxiety in individuals whose functioning is most affected by concerns about sharing their status. Implications for helping people living with HIV struggling with significant levels of anxiety about HIV disclosure are discussed.

What leads some people to think they are HIV-positive before knowing their diagnosis? A systematic review of psychological and behavioural correlates of HIV-risk perception.

Current HIV-risk perception refers to the extent to which individuals think they might be HIV-positive. This belief, distinct from the perceived risk about being infected with HIV in the future, is likely to have a range of important consequences. These consequences may include both psychological effects (e.g., impacts on well-being) and behavioural effects (e.g., HIV testing uptake). Given these possible outcomes, and the suggested importance of risk perception in health behaviour models, understanding the behavioural and psychological antecedents of current HIV-risk perception is crucial. This systematic review investigates the relationship between behavioural and psychological factors and current HIV-risk perception (in individuals who are unaware of their actual HIV status). Eight studies were eligible for inclusion in the review (five quantitative and three qualitative studies). Drug risk behaviour and sexual risk behaviour (both self and partner) were often associated with current HIV-risk perception, although other studies failed to show a relationship between one's own sexual risk behaviour and risk perception. Psychological factors were only rarely assessed in relation to current HIV-risk perception. Where these variables were included, there was evidence that experiencing symptoms perceived to be consistent with HIV and prompts to test were associated with increased current HIV-risk perception. These findings are consistent with the Common-Sense Model (CSM) of illness representation and self-regulation. Methodological quality criteria were rarely met for the included studies. In addition, it was often difficult to ascertain whether potentially includable studies were eligible due to imprecise definitions of HIV-risk perception. Research and practice implications are discussed, with particular emphasis on the role of risk appraisals as a potential mediator of the relationship between HIV-risk behaviour, symptoms and current HIV-risk perception.

Which Psychological Factors are Related to HIV Testing? A Quantitative Systematic Review of Global Studies.

Deciding to test for HIV is necessary for receiving HIV treatment and care among those who are HIV-positive. This article presents a systematic review of quantitative studies on relationships between psychological (cognitive and affective) variables and HIV testing. Sixty two studies were included (fifty six cross sectional). Most measured lifetime testing. HIV knowledge, risk perception and stigma were the most commonly measured psychological variables. Meta-analysis was carried out on the relationships between HIV knowledge and testing, and HIV risk perception and testing. Both relationships were positive and significant, representing small effects (HIV knowledge, d = 0.22, 95 % CI 0.14-0.31, p < 0.001; HIV risk perception, OR 1.47, 95 % CI 1.26-1.67, p < 0.001). Other variables with a majority of studies showing a relationship with HIV testing included: perceived testing benefits, testing fear, perceived behavioural control/self-efficacy, knowledge of testing sites, prejudiced attitudes towards people living with HIV, and knowing someone with HIV. Research and practice implications are outlined.

Context is Everything: An Investigation of Responsibility Beliefs and Interpretations and the Relationship with Obsessive-Compulsive Symptomatology across the Perinatal Period.

BACKGROUND: The cognitive-behavioural model of perinatal OCD suggests the role of increased sense of responsibility during the perinatal period in the development and maintenance of obsessive-compulsive symptoms. However, the idiosyncratic nature of responsibility attitudes and interpretations of intrusions is not fully understood. AIMS: To investigate how responsibility interpretations regarding intrusions vary across the perinatal period and how this relates to obsessive-compulsive symptomatology. METHOD: 94 women (26 antenatal, 35 postpartum and 33 non-childbearing controls) completed measures of responsibility attitudes and interpretations regarding specific intrusions (either general or baby-related), as well as obsessive-compulsive symptomatology, anxiety and depression. RESULTS: Postpartum ratings of responsibility interpretations regarding baby-related intrusions were significantly higher than: i) postpartum ratings of responsibility interpretations regarding non-baby intrusions; and ii) control group responsibility interpretations. The groups were not significantly different regarding general responsibility ratings. Ratings of baby-related responsibility interpretations predicted variance in obsessive-compulsive symptomatology. CONCLUSION: The postpartum group showed significant differences in responsibility interpretations regarding baby-related intrusions. These responsibility interpretations were shown to predict obsessive-compulsive symptomatology.

IAPT and Long Term Medical Conditions: What Can We Offer?

BACKGROUND: The proposal of a 4-year plan to integrate treatment of people with long term medical conditions (LTCs) into the IAPT service (Department of Health, 2011) seeks for research to understand the effectiveness of IAPT interventions for this patient group. AIM: The aim of this service development pilot work was to develop an intervention that is effective for people with Type 2 Diabetes Mellitus (T2DM). It was hypothesized that the standard IAPT intervention would not be effective, but that it can be adapted so that it is effective both in terms of mood and self-management of T2DM. METHOD: Clients (n = 95) who experienced mild to moderate depression and/or anxiety and had a diagnosis of T2DM opted to attend. The intervention was adapted over a series of cohorts from a standard Step 2 intervention. A team of Psychological Wellbeing Practitioners (PWPs), a Clinical Health Psychologist and a General Practitioner worked in collaboration, using outcomes measures and feedback from service users and facilitators. RESULTS: The standard IAPT Step 2 intervention met with challenges when specifically targeting this client group. Using paired t-tests, the modified Step 2 intervention demonstrated significant improvements from pre- to postintervention measures both in terms of psychological (n = 17) and physical (n = 9) outcomes. CONCLUSION: It is concluded that it may be possible to modify a generic Step 2 IAPT intervention to demonstrate improvements both in terms of psychological wellbeing and self-management of T2DM. The main adaptations were related to more targeted recruitment and linking of diabetes specifically into the CBT model.

Parental symptoms of posttraumatic stress after pediatric extracorporeal membrane oxygenation*.

OBJECTIVE: To investigate the prevalence of posttraumatic stress symptoms in parents of children who have been supported on extracorporeal membrane oxygenation and to explore associated factors. DESIGN: Descriptive cross-sectional study. SETTING: A specialist pediatric tertiary center in the United Kingdom. SUBJECTS: Parents (n = 52) of children who had been supported with extracorporeal membrane oxygenation at least 6 months previously. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Self-reported questionnaires were completed measuring posttraumatic stress symptom, family functioning, depression, anxiety, and demographic variables. Approximately 20% of parents experienced posttraumatic stress symptoms at levels suggestive of a diagnosis of posttraumatic stress disorder, irrespective of the time that had elapsed since extracorporeal membrane oxygenation. Although having a child who had ongoing illness before extracorporeal membrane oxygenation was associated with avoidance posttraumatic stress symptoms, results suggest that other previously identified risk factors, such as gender and family functioning, may not be risk factors for posttraumatic stress symptom in this population. CONCLUSIONS: A substantial number of parents in this population experience posttraumatic stress symptom. Psychological interventions may be targeted toward those whose child has had ongoing illness before extracorporeal membrane oxygenation.

Information giving and involvement in treatment decisions: is more really better? Psychological effects and relation with adherence.

OBJECTIVES: The aim of this study is to improve our understanding of the ways in which a medical consultation style relates to satisfaction and adherence. DESIGN: Participants completed questionnaires about preferred and perceived consultation styles; psychological variables such as satisfaction, anxiety and depression; and questions about taking medication. Questionnaires were completed prior to the consultation, immediately after, three months later and one year later. Doctors also completed a scale on completion of the consultation. The decisions in question related to women seeking advice about Hormone Replacement Therapy (HRT) and decisions about pain management. RESULTS: Patients expressed preferences for information about the treatment options and for active involvement in the decision process. The extent to which patients perceived themselves as having received information about the treatment options was a particularly consistent predictor of satisfaction. The extent to which patients perceived themselves as having been prepared for the side effects of HRT was a consistent predictor of anxiety. CONCLUSIONS: Perceptions of the amount of information received about medical options, including information preparing individuals for potential side effects of medication, appears to be more important to satisfaction and anxiety, than actual involvement in the decision.

Improving the selective neonatal BCG program.

OBJECTIVES: The aim of the work was to develop and implement an improved selective neonatal Bacille-Calmette-Guerin (BCG) vaccine program in which neonates are systematically assessed, and those identified as at "high risk of being exposed to tuberculosis" are given neonatal BCG. DESIGN: Service models used in other parts of the country were assessed and their limitations and difficulties were carefully considered. Possible service models for local use were then considered. A selective neonatal BCG program involving universal neonatal screening was implemented. SAMPLE: A program was implemented offering BCG to high-risk neonates. RESULTS: As has been the case with other health trusts, developing a new neonatal BCG service met with obstacles and hurdles. Means of overcoming some of the difficulties are presented. Preliminary findings regarding the service model, including neonatal BCG uptake rates, were positive. CONCLUSION: A successful neonatal BCG program was implemented.

Evaluation of a decision-making aid for parents regarding childhood immunizations.

This intervention study evaluates a decision-making aid for parents considering childhood immunizations. Participants (women in 3rd trimester of pregnancy, n = 100) rated likelihood of immunizing their child, anxiety, and perceptions of risk of the diseases and immunizations. Individuals were allocated to intervention group (received a decision aid) or control group (received standard care). Ratings were then repeated, and further ratings were obtained when the infant was 10 weeks old. The intervention compared with the comparison condition was associated with significant increase in likelihood of immunizing the infant on time, decreased perceptions of risks of immunizations, increased perceptions of risk of the diseases, reduced anxiety, and increased satisfaction. This intervention may form a useful basis for decision aids in health care settings.

Feeling bad about immunising our children.

Uptake of MMR vaccinations is as low as 60% in some parts of the UK. This poses a serious public health issue. This longitudinal study investigates parental decisions about MMR and single vaccinations. Parents (n=114) rated their perceptions of the benefits and risks of immunisation, and emotion-related variables; and were followed up to ask their final immunisation decision. Analyses demonstrated that parental decisions were explained by emotion-related variables, specifically anticipated responsibility and regret. It was concluded that parents' decisions about MMR are strongly influenced by the idea than harm that occurs as a result of deciding to immunise (commission) is less acceptable than harm that occurs as a result of deciding not to immunise (omission) (known as 'omission bias').

Shared decision-making, health choices and the menopause.

The growing influence of the mass media on public understanding of health care matters has increased both information and misinformation in patients seeking help with menopausal symptoms. The use of shared decision-making strategies provides the opportunity to engage the patient in taking some responsibility for their own treatment. It also allows the identification and correction of any distortions in the perceived balance of evidence for and against any particular treatment. Shared decision-making balances the need to respect patients' values and autonomy with the drive towards evidence-based medicine and clinical cost-effectiveness. Although ways of achieving such a balance are much discussed, the current need is for research which can identify effective strategies that allow the principles of "shared decision-making" and "evidence-based patient choice" to be validated and applied in clinical practice. Previous research focused on hormone replacement therapy indicates that the patient's decision is the outcome of the way they balance the pros and cons of taking (or not taking) it, and that their satisfaction with the decision is strongly associated with the perception that they have been given information about the full range of treatment available. It therefore seems likely that patients will respond more positively to consultations which include discussion of hormone replacement therapy alongside alternative strategies such as natural remedies and dietary/lifestyle changes. Psychological factors influencing treatment choice and the decision making process are discussed, and clinical and research implications for clinical practice in the menopause clinic examined.

Understanding and predicting parental decisions about early childhood immunizations.

This research investigated the factors that influence decisions about immunizations. Women in the third trimester of pregnancy (N=195) rated their likelihood of immunizing their child; stated their reasons for and against immunizing; and rated their perceptions of the benefits and risks of immunization, feelings of responsibility, and anticipated regret if harm occurred. Immunization status was determined at follow-up. Stepwise regression analyses demonstrated that immunization decisions are strongly influenced by omission bias factors such as anticipated responsibility and regret variance (which explained more than 50% of variance). It is suggested that parents may benefit from antenatal decision aids that address omission bias and encourage them to assess benefits and risks of immunizations on the basis of scientific evidence.

Intentional and unintentional nonadherence: a study of decision making.

Nonadherence to medical regimens is a major problem in health care. Distinguishing between intentional nonadherence (missing/altering doses to suit one's needs) and unintentional nonadherence (forgetting to take medication) may help in understanding nonadherence. Participants with respiratory conditions completed an anonymous questionnaire about (i) nonadherence; (ii) reasons for and against taking medications; and (iii) perceived style of the consultation in which their medication was first prescribed, as well as demographic and clinical variables. Consistent with the hypotheses, intentional nonadherence is predicted by the balance of individuals' reasons for and against taking medication as suggested by the Utility Theory, where these reasons include only those which the individual considers relevant and on which he/she focuses. Unintentional nonadherence is less strongly associated with decision balance, and more so with demographics. The research highlights the importance of (a) treating intentional and unintentional nonadherence as separate entities and (b) assessing individuals' idiosyncratic beliefs when considering intentional nonadherence.