Psychologists' perspectives on supported decision making in Ireland.

BACKGROUND: A new legal capacity act was introduced in Ireland in 2015. This study aimed to identify and critically examine key issues in the area of decision-making capacity from the perspective of psychologists working with adults with an intellectual disability. METHODS: A qualitative exploratory approach was employed, and the study was positioned in a social constructionist framework. Purposive and snowballing sampling methods were used to recruit 15 clinical psychologists working with adults with an intellectual disability. Data were collected with the use of individual semistructured interviews. Interview transcripts were analysed using a model of thematic analysis. RESULTS: Six themes were identified: (1) a presumption of capacity but a culture of incapacity, (2) supporting decision making as a process, (3) authenticity of decision making, (4) need for support and training, (5) contributions of psychology and (6) the way forward. CONCLUSIONS: Participants described that people with intellectual disabilities were often excluded from decision-making processes. They welcomed the functional approach to decision making, considered substituted decision making to be necessary within a support framework and described supporting decision making as a process. Systemic, resource and attitudinal challenges were identified.

The effectiveness of psychological interventions for fatigue in cancer survivors: systematic review of randomised controlled trials.

BACKGROUND: Fatigue is a common symptom in cancer patients that can persist beyond the curative treatment phase. This systematic review evaluated the effectiveness of psychological interventions for cancer-related fatigue in post-treatment cancer survivors. METHODS: We searched relevant online databases and sources of grey literature. Randomised controlled trials (RCTs) evaluating psychological interventions in adult cancer patients after the completion of treatment, with fatigue as an outcome measure, were included. Two review authors extracted data independently from the selected studies and assessed the methodological quality using the Cochrane Collaboration Risk of Bias Tool. RESULTS: Thirty-three psychological interventions were identified. The sample size of the included studies varied between 28 and 409, with 4525 participants overall. Twenty-three of the included studies reported a significant effect of the interventions on reducing fatigue in cancer survivors. Most interventions focused on psychoeducation, mindfulness, cognitive or behaviour therapy-oriented strategies. However, studies differed widely in terms of measurement tools used to assess fatigue, mode, duration and frequency of the intervention delivery. CONCLUSIONS: This review showed some tentative support for psychological interventions for fatigue after cancer treatment. However, as the RCTs were heterogeneous in nature and the number of high-quality studies was limited, definitive conclusions are not yet possible. With the growing need for stage-specific research in cancer, this review sought to inform current practice and to summarise the existing evidence base of randomised controlled trials in the area. SYSTEMATIC REVIEW REGISTRATION: PROSPERO registration number: CRD42014015219.

Diabetes in pregnancy: worse medical outcomes in type 1 diabetes but worse psychological outcomes in gestational diabetes.

BACKGROUND: Women with diabetes experience an increased risk of adverse pregnancy outcomes. AIM: We aim to describe and quantify the psychological impact of the diagnosis of diabetes in pregnant women with type 1 diabetes and gestational diabetes mellitus (GDM) compared to each other and to their counterparts without diabetes. DESIGN: This is a survey-based study with prospective collection of pregnancy outcome data. METHODS: A total of 218 pregnant women (50% with diabetes) were administered questionnaires relating to psychological health. Maternal and neonatal characteristics and pregnancy outcomes were collected. Associations between key psychometric and health outcome variables were examined. RESULTS: At least 25% of women in all three pregnancy groups had scores indicating affective distress in at least one domain. Compared to those with type 1 diabetes, women with GDM evidenced a greater number of uplifts in pregnancy (U = 94, P = 0.041), but also higher levels of overall anxiety (U = 92, P = 0.03) and stress (U = 82, P < 0.01). Women with GDM also had significantly elevated overall depression scores, compared with the control group (U = 34, P = 0.02). Both groups of women with diabetes had clinically elevated levels of diabetes-related distress. There were no associations between maternal psychological variables and pregnancy outcomes. CONCLUSIONS: This work highlights a potential role for targeted psychological interventions to address and relieve symptoms of anxiety and depression among pregnant women with diabetes.

A randomised cross-over trial comparing the McGrath(®) Series 5 videolaryngoscope with the Macintosh laryngoscope in patients with cervical spine immobilisation.

We compared the performance of the McGrath® Series 5 videolaryngoscope with the Macintosh laryngoscope in 49 patients without suspected cervical spine pathology, whose cervical spine was immobilised using a semi-rigid collar. The primary outcome was the view obtained at laryngoscopy. Secondary outcomes included time to tracheal intubation, rates of successful intubation and incidence of complications. In all patients, the view was better (92%) or the same (8%) in the McGrath group versus the Macintosh group (p < 0.01). There were no failed intubations in the McGrath group and seven (28%) in the Macintosh group (p < 0.02). There was no statistical difference in time taken to intubate or incidence of complications. We conclude that the McGrath® Series 5 is a superior laryngoscope when cervical spine immobilisation is maintained during tracheal intubation.

The impact of sharing personalised clinical information with people with type 2 diabetes prior to their consultation: A pilot randomised controlled trial.

AIM: To assess the impact of sharing personalised clinical information with people with type 2 diabetes prior to their out-patient consultation on patient involvement during the consultation, diabetes self-management self-efficacy and glycaemic control. METHODS: A pilot three-arm randomised controlled trial. The 'intervention booklet' group received a booklet including personalised clinical information, a 'general information booklet' control group received a booklet with no personalised clinical information and a 'usual care' control group received no written information. RESULTS: 136 people took part. The intervention group were significantly more likely to have shown the booklet to a 'significant other', (48% V 23%, p<0.05), brought the booklet with them to the clinic (85% V 35%, p<0.005) and to refer to the booklet during the consultation (45% V 13%, p<0.005). No significant differences in patient involvement during the consultation, diabetes management self-efficacy or glycaemic control were found between the three groups. CONCLUSIONS: Although participants found it useful to receive their clinical results, no differences were found in the patient outcomes measured. PRACTICE IMPLICATIONS: Further pilot work on the timing of the intervention, who it is targeted at and what outcomes are measured is warranted before proceeding to a full-scale RCT.

A comparison of the ease of tracheal intubation using a McGrath MAC(®) laryngoscope and a standard Macintosh laryngoscope.

We compared the McGrath MAC(®) videolaryngoscope when used as both a direct and an indirect laryngoscope with a standard Macintosh laryngoscope in patients without predictors of a difficult tracheal intubation. We found higher median Intubation Difficulty Scores with the McGrath MAC as a direct laryngoscope, 1 (0-3 [0-5]) than when using it as an indirect videolaryngoscope, 0 (0-1 [0-5]) or when using the Macintosh laryngoscope, 0 (0-1 [0-5]), p = 0.04. This was mirrored in the subjective user reporting, scored out of 10, of difficulty for each method 3.0 (2.0-3.4 [0.5-80]); 2.0 (1.0-3.9 [0-70]) and 2.0 (1.0-3.3 [0-70]), respectively (p = 0.01). This difficulty is in part explained by the poorer laryngeal views recorded using the Cormack and Lehane classification system (p < 0.001) and reflected in the higher than normal operator force required (25%, 4%, 8% for each method, respectively, p < 0.001) and the increased use of rigid intubation aids (21%, 6%, 2%, respectively, p < 0.001). There was no difference between the groups in time taken to intubate or incidence of complications. There was no statistical difference in the performances as measured between the McGrath MAC used as an indirect videolaryngoscope and the Macintosh laryngoscope. We cannot recommend that the McGrath videolaryngoscope be used as a direct laryngscopic device in place of the Macintosh.

Cognitive behavioural therapy for chronic pain in people with an intellectual disability: a case series using components of the Feeling Better programme.

BACKGROUND: Cognitive behavioural therapy (CBT) has been shown to be effective in assisting people to cope with chronic pain. However, this approach has not been systematically evaluated with people with an intellectual disability (ID). This pilot study sought to examine the feasibility and clinical utility of CBT for people with an ID, using elements of a manualised CBT pain management programme called Feeling Better. METHOD: Five people with chronic pain who were functioning within the mild range of ID received a modified, individual eight-session cognitive behavioural intervention aimed at development of pain management skills. The participants' scores on a range of measures (pain management knowledge, pain self-efficacy, use of pain coping strategies and effectiveness of coping strategies) were compared pre-intervention, post-intervention and at 1-month follow-up. RESULTS: The results indicated that participant scores on pain management knowledge, wellness-focused coping and effectiveness of coping increased following the intervention. However, these gains were generally not maintained at follow-up. CONCLUSION: We concluded that CBT has potential utility for pain management in people with an ID, but that it requires a trial of a more intensive and prolonged intervention with the systematic involvement of care givers.

Barriers and facilitators to attending pre-pregnancy care services: the ATLANTIC-DIP experience.

AIMS: Pre-pregnancy care programmes can help to reduce morbidity and mortality associated with pregnancy in women with diabetes. However, uptake of a free pre-pregnancy care programme along the Irish Atlantic seaboard was only 30%. This study sought to better understand why women with diabetes mellitus (Type 1 and Type 2) choose to attend pre-pregnancy care services and to identify perceived barriers to attendance. METHODS: A participative health research method called the participative research process was used to facilitate 14 women with diabetes mellitus to create 'webs of ideas' on the reasons for attendance and non-attendance at a pre-pregnancy care programme, and potential solutions for each obstacle. RESULTS: The participants identified information on the risks of pregnancy as crucial for all childbearing women with diabetes, as lack of information was a major obstacle to attendance at pre-pregnancy care programmes. Practical constraints such as childcare difficulties and work commitments were also identified. Participants stressed that health practitioners need to focus on positive aspects of pregnancy and childbearing rather than focusing solely on the problematic aspects for women with diabetes mellitus. CONCLUSIONS: Women with diabetes need support and reassurance about their ability to control blood glucose and have a successful pregnancy while coping with the multiple challenges inherent in diabetes management and pregnancy. To increase uptake of pre-pregnancy care, a norm needs to be established that situates pre-pregnancy care as something every woman with diabetes will do, whether or not she is actively contemplating becoming a mother at the time. Active use of social media and facilitating peer support should be encouraged in pre-pregnancy services to facilitate attendance. The time has come to incorporate the skills of a clinical psychologist in the delivery of a pre-pregnancy service.

Psychological stress associated with diabetes during pregnancy: a pilot study.

Gestational Diabetes Mellitus (GDM) affects approximately 12% of women. The impact of a diagnosis of GDM may lead to increased stress in pregnancy due to the demands of adherence to a treatment regimen and maternal concern about adverse outcomes for the mother and baby. We examined the psychosocial profile of 25 women with gestational diabetes mellitus (GDM) and compared them to 25 non-diabetic pregnant women. Measures administered included the Pregnancy Experiences Scale (PES), the Depression, Anxiety Stress Scale (DASS), the Problem Areas in Diabetes Scale (PAID-5) and the Perceived Social Support Scale (PSSS). The GDM group reported a significantly greater ratio of pregnancy 'hassles' to pregnancy 'uplifts'. The GDM group also had a significantly higher Depression score and were twice as likely to score above the cut-off for possible depression. Elevated levels of diabetes-related distress were found in 40% of women with GDM. In addition, the GDM group reported less social support from outside the family. Our preliminary study indicates that the experience of GDM appears to be associated with increased psychological distress in comparison to the experience of non-diabetic pregnant women. This may indicate the need for psychological screening in GDM and the provision of psychological support in some cases.

Chronic pain in people with an intellectual disability: under-recognised and under-treated?

AIM: To examine the nature, prevalence and impact of chronic pain in adults with an intellectual disability (ID) based on carer report. METHODS: Postal questionnaires were sent to 250 care-givers and 157 responses were received (63%). RESULTS: Chronic pain was reported in 13% of the sample (n = 21), 6.3% had pain in two sites and 2% had pain in three or more sites. Of those with chronic pain, 19 experienced mild chronic pain, while severe pain was reported for two service users. Pain problems were more prevalent in those with a Mild ID than in those with more severe disability, perhaps reflecting the ability of the Mild group to communicate about their pain. Non-prescription medication was the most common form of treatment and there was a notable absence of involvement of specialist pain services. CONCLUSIONS: Given their increased risk for chronic pain, we concluded that pain in the ID population may be under-recognised and under-treated, especially in those with impaired capacity to communicate about their pain.

Short-form measures of diabetes-related emotional distress: the Problem Areas in Diabetes Scale (PAID)-5 and PAID-1.

AIMS/HYPOTHESIS: We wanted to identify a five-item short form of the Problem Areas in Diabetes Scale and a single-item measure for rapid screening of diabetes-related emotional distress. METHODS: Using an existing database of 1,153 patients with diabetes, we conducted a principal-components analysis to identify a set of five items and then conducted a reliability analysis and validity checks. From those five items, we identified the item with the strongest psychometric properties as a one-item screening tool. RESULTS: We identified a reliable and valid short version of the Problem Areas in Diabetes Scale (PAID) comprising five of the emotional-distress questions of the full PAID items (PAID-5, with items 3, 6, 12, 16, 19). The PAID-5 has satisfactory sensitivity (94%) and specificity (89%) for recognition of diabetes-related emotional distress. We also identified a one-item screening tool, the PAID-1 (Question 12: Worrying about the future and the possibility of serious complications), which has concurrent sensitivity and specificity of about 80% for the recognition of diabetes-related emotional distress. CONCLUSIONS/INTERPRETATION: The PAID-5 and PAID-1 appear to be psychometrically robust short-form measures of diabetes-related emotional distress.

Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives.

BACKGROUND: Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID. METHOD: A questionnaire survey which included case scenarios was carried out with family (n = 155) and staff carers (n = 153) of people with an ID in the west of Ireland. RESULTS: In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships. CONCLUSION: When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives.

BACKGROUND: Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy. METHOD: Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13-17 years; 18-30 years; 31+ years). RESULTS: Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years. CONCLUSION: Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.

Use of the McGrath video laryngoscope in awake patients.

Reported are three cases of successful tracheal intubation using the McGrath Video Laryngoscope in awake patients. All three patients had predicted difficult direct laryngoscopy and signs of upper airway obstruction.

Enhancing capacity to make sexuality-related decisions in people with an intellectual disability.

AIM: The aim of the study was to apply an intervention to the area of sexual knowledge in order to determine if capacity to make sexuality-related decisions could be improved. METHOD: The study adopted a single subject design using multiple baseline method with four adults with a moderate intellectual disability. The intervention consisted of individually tailored sex education adapted from Living Your Life (Bustard 2003). Treatment was offered to each participant twice weekly for a 10-week period on a one-to-one basis. The Sexual Consent and Education Assessment (SCEA, Kennedy 1993) was used for measurement purposes. The SCEA K-Scale (knowledge) and the S-Scale (safety practices) were administered weekly throughout the baseline, treatment and post-treatment phases of the study. Staff concerns were also assessed using the SCEA Inappropriate Sexual Behaviour Scale. RESULTS: All four participants improved their decision-making capacity in all targeted areas as measured by improvements in K-Scale and S-Scale scores. Staff concerns were not increased as indicated by results on the Inappropriate Sexual Behaviour Scale. Six-month follow-up data for three of the participants showed maintenance of scores on the S-Scale and some decay in scores on the K-Scale from post-intervention performance. CONCLUSION: The results demonstrate that tailored sexuality education can improve capacity to make sexuality-related decisions.

Lifestyle and health behaviours of adults with an intellectual disability.

BACKGROUND: There is currently no published research in Ireland on the health behaviours of adults with an intellectual disability (ID). With an increasing age profile and similar patterns of morbidity to the general population, the ID population would benefit from baseline data from which to establish risk factors. METHODS: A questionnaire survey was carried out with 157 carers of people with an ID in the west of Ireland. RESULTS: The results of this survey were compared with results of a health survey for the general population in the same region. The present survey found that 68% of the ID sample was overweight or obese. Levels of smoking (2.6%) and regular alcohol consumption (10.3%) were relatively low in comparison with the general population. However, participation in exercise and adherence to a healthy diet were poor. The level of resident choice and decision-making did not have any relationship to health behaviours nor did residential setting. Finally, there were no gender differences in health and lifestyle profiles. CONCLUSION: The results of this study have important implications for health promotion interventions for people with an ID.

Simulated pain on the Symptom Checklist 90-Revised.

This study investigated whether a pain clinical sample and pain simulators could be distinguished by their responses on the Symptom Checklist 90-Revised (SCL-90-R). Fifty patients with a pain condition completed the SCL-90-R under normal instructions while 20 students responded under instructions to feign a pain disorder to obtain compensation but to attempt to avoid detection. Pain patients obtained generalized elevations, with the highest scores on Depression, Obsessive-Compulsive, and Somatization. The simulators exceeded the pain group on all clinical scales of the SCL-90-R, tending to greatly overestimate the degree of psychological distress in pain patients. Simulators had extreme elevations and were more likely to obtain a T score greater than 70 on each of the clinical scales. Sensitivity, specificity, positive and negative predictive power values, and optimal diagnostic cutoff scores for the clinical scales are reported. The recommended Positive Symptom Total (PST) cutoff score for "faking bad" in the SCL manual had poor specificity. The SCL-90-R warrants further study as an aid to identifying pain simulation.

Simulated malingering in pain patients: a study with the Pain Patient Profile.

OBJECTIVE: To investigate the utility of the Pain Patient Profile (P3) in detecting those who are faking or exaggerating complaints of pain while attempting to avoid detection. METHOD: A control group of pain patients ('Pain Controls'; PC; N = 62) was compared with a general clinical group who did not report pain but were instructed to simulate malingered pain ('General Rehabilitation Simulators', GR, N = 34); and a group whose primary problem was chronic pain who were instructed to exaggerate the extent of their pain and related problems ('Pain Simulators' PS; N = 26). RESULTS: Both groups of simulating participants reported significantly higher scores on all clinical scales (anxiety, depression, somatization) compared with non-simulating control participants and were more likely to obtain an abnormal T-score on the clinical scales. The validity scale was able to differentiate the PS group from the PC group, but the GR group was not differentiated from the PC group by the validity scale. CONCLUSIONS: The results indicate that with further study, the P3 may be a useful adjunct to the clinical assessment of symptom magnification in pain claimants.