Exploratory and confirmatory factor analysis of emPHasis-10: The health-related quality-of-life measure in pulmonary hypertension.

The emPHasis-10 is a health-related quality of life (HRQoL) unidimensional measure developed specifically for adults with pulmonary hypertension. The tool has excellent psychometric properties and is well used in research and clinical settings. Its factor structure has not been examined, which may help to identity a complimentary approach to using the measure to examine patient functioning. We performed an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on a data set collected from 263 adults with PH recruited from a community setting. The EFA suggested the emPHasis-10 consists of three underlying latent variables, which based on the loading of items, were termed "fatigue" (Items 3, 4, and 5), "independence" (Items 7, 8, 9, and 10), and "breathlessness" (Items 1, 2, and 6). All factors were found to have good internal consistency. "Independence" accounted for most of the variance (29%), followed by "breathlessness" (22%) and "fatigue" (19%). The CFA looked to confirm the fit of a three-factor model. A higher-order model was found to be the best fit consisting of HRQoL as a superordinate factor, for which the association between this factor and the 10 items was mediated through the three latent factors. Further analyses were performed testing the validity of the latent variables revealing all were significantly correlated with self-reported measures of depression, anxiety, health-anxiety, and dyspnea. Our analyses support the emPHasis-10 as a measure of HRQoL, while also proposing the clinical utility of examining the three emergent factors, which could be used to glean additional insight into the respondent's functioning and inform care.

Cognitive and behavioral processes predict anxiety and depression in patients with pulmonary hypertension.

Emotional and psychological difficulties cannot fully be explained by disease-related factors in people with pulmonary hypertension (PH). This study examined the relationship between anxiety, depression, demographic, objective and subjective PH factors, and self-reported cognitive and behavioral processes, which have been associated with mood in clinical and nonclinical samples. This is a secondary analysis of baseline data from 77 adults with PH who took part in a randomized controlled trial of a self-help intervention targeting anxiety in PH. Participants completed self-report measures including: demographic (age, gender, ethnicity, education, employment) and clinical questionnaire (PH diagnosis, functional class, years since diagnosis), depression (PHQ-9), anxiety (GAD-7), health-related quality of life (emPHAsis-10), dyspnea (D12), and cognitive and behavioral processes (CBP-Q) scale. Data were analyzed using correlational and regression analyses. Overall, 70% and 63% of participants scored above the clinical cut off for anxiety and depression, respectively. Demographics were not associated with anxiety or depression. PH-related factors were correlated with depression but not anxiety. A multiple regression analysis suggested dyspnea and cognitive processes significantly predicted anxiety whereas behavioral processes were not a unique predictor. In contrast, dyspnea and behavioral processes predicted depression whereas cognitive processes did not. While a body of evidence exists demonstrating people with PH are more likely to experience anxiety and depression, less is known about factors that cause and maintain these disorders. Findings highlight the significance of subjective factors that could be a target for screening and psychological treatments for emotional difficulties, such as cognitive behavioral therapy.

Long-COVID in people with intellectual disabilities: A call for research of a neglected area.

Background: Long-COVID (also known as post-coronavirus-19 syndrome) is a term used to describe symptoms that people experience following their recovery from the COVID-19 virus. The severity of long-COVID is well recognised, with healthcare providers commissioning services to diagnose and treat those affected, as well as funded research into the condition. Methods: We performed a systematic search for relevant articles but were unable to find any research on long-COVID in people with intellectual disabilities. Due to the lack of data, we have only been able to make extrapolations from what is known about the condition within the general population. Findings: We provide an overview of long-COVID and its potential relevance to people with an intellectual disability. We have focused specifically on symptoms or signs, prevalence, risk factors and treatments of the condition in this group, highlighting areas for clinical practice and future research from a psychosocial perspective. We raise serious questions about our current understanding and the availability of the evidence-based to inform treatments tailored towards this population. Conclusion: This is the first report that we are aware of on the topic of long-COVID in people with an intellectual disability. The lack of research is preventing us from gaining a greater understanding of how the condition impacts people with an intellectual disability.

Coping styles associated with depression, health anxiety and health-related quality of life in pulmonary hypertension: cross-sectional analysis.

OBJECTIVES: Pulmonary hypertension (PH) is a life-shortening disease associated with early mortality and high morbidity. With advancements in medical treatment, people are living longer with the disease, and research is now needed to explore variables that help to enhance patient-reported outcomes. This study investigated the coping strategies of individuals with PH and examined the relationship between coping, depression, health anxiety and health-related quality of life (HRQoL). DESIGN: A cross-sectional survey design was used. PARTICIPANTS: Participants (n=121) were recruited from membership of Pulmonary Hypertension Association (PHA) UK. OUTCOME MEASURES: Participants completed a series of questionnaires assessing depression (Patient Health Questionnaire-9), health anxiety (Short Health Anxiety Inventory), HRQoL (emPHasis-10) and coping (Brief COPE). A principal component analysis was used to identify participants' coping profile. A series of correlational, linear and moderated multiple regression analyses were performed to examine the relationship between coping and health-related outcomes. RESULTS: Overall, 43% participants met criteria for potential clinical depression. Depression and health anxiety were strongly associated with HRQoL, explaining 37% and 30% of variance respectively (p<0.001). A principal component analysis identified a four-component model of coping. Dimensions were named based on construct items: 'cognitive and affirmation coping' (seven items), 'passive coping' (four items), 'external coping' (seven items) and 'substance use coping' (two items). Cognitive and affirmation and external coping moderated the relationship between depression and HRQoL, with high use of these coping strategies reducing the impact of depression on HRQoL. External coping also moderated the effect of health anxiety on HRQoL. CONCLUSIONS: The results uniquely highlight the importance of coping styles and psychological distress in predicting HRQoL in PH. Our findings indicate the importance to assess for psychological distress in this population and suggest the need to offer psychological interventions that take into account coping resources and strategies.

Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review.

Pulmonary hypertension (PH) is a heterogeneous condition, associated with a high symptom burden and high rates of disability. While nonprofessional caregivers are essential in helping patients live better, little is known about the impact on caregivers and support that is currently available. This review has synthesised evidence examining experiences of caregivers of adults with PH. Web of Science, PubMed, PsycINFO, and Cochrane Library were searched for all types of study design. Articles were evaluated and analysed using a Joanna Briggs Institute approach. Eight articles primarily focussed on pulmonary arterial hypertension and chronic thromboembolic PH were identified investigating 456 caregivers from at least 10 countries. Four categories were identified describing caregiver demographics, responsibilities, impact, and support. Four integrated themes emerged identifying possible unmet needs and therapeutic targets: (1) Change, reflecting the various demands caring had on people as they attempted to balance the needs of the patient and their own; (2) Preparedness, discussing how caregivers could feel uncertain and unskilled for their duties and unsupported; (3) Isolation, with caregivers often encountering challenges to gaining information on PH turning to PH organisations and others affected for support and connection; and (4) Physical and mental demands, reflecting the multifaceted impact of caring. Findings add to the evidence demonstrating that PH can have a considerable impact on patients' support network. Providing support for caregivers of people with PH is an unmet need and may have a positive impact on patients and is an area that requires further research.

Self-help cognitive behavioural therapy for anxiety in pulmonary hypertension: pilot randomised controlled trial.

Objective: People with pulmonary hypertension (PH) are at an increased risk of experiencing anxiety disorders. This study developed and tested the acceptability, feasibility and preliminary effectiveness of a cognitive behavioural self-help intervention for anxiety in adults with PH using a pilot randomised control trial design. Methods: Individuals with PH recruited from pulmonary hypertension associations were randomised to either receive a newly developed self-help intervention (n=37) or a wait-list condition (n=40). Acceptability was explored using mixed-methods questionnaires. A 2×3 repeated-measures analysis of variance was used to explore anxiety (GAD-7), depression (PHQ-9), health-related quality of life (emPHAsis-10), dyspnoea (D-12), self-mastery (Self-Mastery Scale) and mood-related cognitions and behaviours (CBP-Q) at baseline, post-intervention and 1-month follow up. A mediation analysis was performed to examine potential mechanisms of change. Results: Dropout was low at 15.6%. All participants would recommend the intervention to another person with PH and felt it had helped with their anxiety. Participants in the intervention group reported a reduction in anxiety, depression and cognitive and behavioural processes linked with mood disorders, compared to the control group. Change in unhelpful cognitions and behaviours mediated the relationship between intervention condition and change in anxiety and depression. Discussion: The intervention was found to be acceptable, feasible and safe. Anxiety at baseline was higher than previously observed, which could be associated with the additional burden caused by COVID-19 as the intervention was trialled during the pandemic. Findings add to the growing evidence supporting the use of psychological therapies, including cognitive behavioural therapy, in this clinical group.

What do we know about non-epileptic seizures in adults with intellectual disability: A narrative review.

Psychogenic non-epileptic seizures (PNES) superficially resemble epileptic seizures, but are not associated with abnormal electrical activity in the brain. PNES are a heterogeneous entity and while there is increasing interest in the characterisation of PNES sub-groups, little is known about individuals with PNES who have an intellectual disability (ID). ID is a lifelong condition characterised by significant limitations in cognitive, social and practical skills. ID (commonly with comorbid epilepsy) has been identified as a risk factor for developing PNES. However, people with ID are often excluded from research in PNES. This has unfortunately resulted in a lack of evidence to help inform practice and policy for this population. This narrative review synthesises the currently available evidence in terms of the epidemiology, demographic and clinical profile of adults with PNES and ID. There is a particular focus on demographics, aetiological factors, PNES characteristics, diagnosis and treatment of the condition in this population. Throughout this article, we critique the existing evidence, discuss implications for clinical practice and highlight the need for further research and enquiry. What emerges from the evidence is that, even within the sub-group of those with ID, PNES are a heterogeneous condition. Individuals with ID and PNES are likely to present with diverse and complex needs requiring multidisciplinary care. This review is aimed at the broad range of healthcare professionals who may encounter this group. We hope that it will stimulate further discussion and research initiatives.

Intense connection and love: The experiences of autistic mothers.

LAY ABSTRACT: For many women, adulthood involves becoming a mother. Knowledge of how motherhood is experienced by autistic women is currently poor. Poor knowledge has a range of negative consequences and can lead to inappropriate support. In this study, nine autistic women were interviewed about their experiences of motherhood. Seven of the nine mothers had an officially diagnosed autistic child, the final two mothers also suspected at least one of their children to be autistic. Systematic in-depth analysis of interview transcripts identified a range of common themes. Participants largely experienced motherhood as joyful, rewarding, and enjoyable, though managing children's needs had a profound personal impact. Participants reflected on the need for self-care and self-acceptance, resulting in personal growth and adaptation. Participants also spoke of strong bonds, feelings of intense connection, and a range of shared experiences with their children. It was also clear that autistic motherhood is associated with a series of challenges unlikely to be experienced by non-autistic mothers, including the necessity of negotiating misunderstandings from others. The findings demonstrate that, generally, professionals need to be better educated on how autism presents in adulthood, including the fact that autistic women often engage in behaviour to mask their true self. Professionals need to know that there is potential for mismatching between emotional experience and facial expression, that autistic women have sensory needs (especially in pregnancy). Professionals frequently struggle to effectively take the needs and perspectives of autistic mothers into account, resulting in profoundly negative consequences for the mother.

Adults' experiences of living with pulmonary hypertension: a thematic synthesis of qualitative studies.

OBJECTIVES: Pulmonary hypertension is a life-shortening disease that has a considerable impact on quality of life. Improving our understanding of how individuals are affected and cope with the disease will help to improve services and outcomes. This review synthesises the published qualitative research that has listened to adults discuss their experiences of living with the disease. DESIGN: A comprehensive systematic search of four databases was conducted in May 2020: Web of Science, PubMed, PsycINFO and Cochrane Library. Suitable studies were evaluated using the Critical Appraisal Skills programme. Findings from the studies were extracted and subjected to a thematic synthesis. RESULTS: Nineteen articles were identified reflecting the experiences of over 1900 individuals impacted by pulmonary hypertension from Europe, North and South America and Asia. Ten studies did not report participant's WHO functional class of pulmonary hypertension, which resulted in comparing experiences between different severity difficult. All studies met the majority of the quality assessment items. Six descriptive themes emerged discussing participant's experiences of diagnosis, treatment, prognosis, healthcare professionals, impact and coping with pulmonary hypertension. Four higher order analytical themes were developed from the descriptive themes, reflecting: (i) uncertainties and anxiety that participants encountered related to pulmonary hypertension; (ii) lack of recognition of the impact of the condition; (iii) frustration at the paucity of awareness of pulmonary hypertension in society and healthcare settings and (iv) participant's accounts of transitioning through different stages of living with the disease. CONCLUSIONS: These findings form the first synthesis of experiences of life in individuals impacted by pulmonary hypertension and illustrate the multifaceted impact of the condition. The voices of numerous groups are missing from the literature highlighting the need for additional research. The results have implications for clinical practice emphasising the role of educational and psychological therapies to support those with the disease.

The relationship between cognitive variables and offending behaviour in adults with intellectual disabilities: A systematic review.

BACKGROUND: Interventions for offenders with intellectual disabilities (ID) have used cognitive variables as measures of treatment outcome. However, the relevance of cognitive variables to offending in people with intellectual disabilities is unclear. This review aimed to evaluate the evidence for a relationship between cognitive variables and offending in people with intellectual disabilities. METHOD: A systematic search identified studies comparing offenders and non-offenders with intellectual disabilities on an aspect of cognition. Seven cognitive variables were found and compared across 15 studies. These were appraised for their quality using an adapted quality appraisal checklist. The reliability and validity of cognitive measures were also considered. RESULTS AND CONCLUSIONS: Other than for cognitive distortions, the evidence for a relationship between cognitive variables and offending in people with intellectual disabilities is currently limited due to methodological weaknesses and the small number of studies assessing each variable. Clinicians are advised to focus on cognitive distortions until better evidence is available.

The views of service users on the accessibility, acceptability, and effectiveness of psychodynamic psychotherapy.

PURPOSE: This study aimed to assess how accessible, acceptable, and effective psychodynamic psychotherapy (PP) is perceived to be by service users. METHOD: Interviews were conducted with 10 participants, who had finished, or were attending, PP. Transcripts were analyzed using thematic analysis. RESULTS: Most participants understood how they had accessed PP. However, a minority were unsure. Some found traveling to sessions anxiety-provoking and appreciated a friendly greeting upon arrival. Participants highlighted feeling listened to. However, many participants were unhappy about therapy ending and struggled to share what they had learned. Some were surprised by the content of sessions. Finally, most participants highlighted problems that had improved because of therapy. IMPLICATIONS: Clinicians should ensure that service users understand the nature of PP before starting sessions and identify clear goals. Support traveling to sessions may improve attendance, Finally, the importance of planning the ending of therapy was highlighted. ORIGINALITY VALUE: The paper captures the views of those with ID on the accessibility, acceptability, and effectiveness of PP.

Attitudes towards people with intellectual disability in the UK and Libya: A cross-cultural comparison.

BACKGROUND: The attitude of the general population towards people with intellectual disability (ID) provides important background for policy development. Furthermore, because of changes in attitudes across cultures, it is vital to ground policy development for each country in data from that country. AIMS: This paper aimed to undertake a cross-cultural study, investigating attitudes to people with ID in Libya in the year 2011, and to compare the Libyan data with those for the UK. METHODS AND PROCEDURES: This paper provides a cross-cultural analysis of attitudes to people with ID, using a questionnaire study of three groups in Libya and in the UK: science students, psychology students and professionals in ID support. The questionnaire used was the established Community Living Attitude Scales for Mental Retardation (CLAS-MR). OUTCOMES AND RESULTS: In terms of the four CLAS-MR sub-scales, the Libyan sample showed significantly less favourable scores on Empowerment, Similarity and Exclusion than the UK sample, but no significant difference on the Sheltering sub-scale. Within-country analysis indicated no main effects of gender on all four sub-scales in Libya and the UK. CONCLUSIONS: This study is the first to undertake quantitative analysis of attitudes to people with ID in Libya. The attitudes were in general less favourable than in the UK and other Western countries, but showed similarities with studies of attitudes to people with ID in Pakistan.

Using qualitative methods in research with people who have intellectual disabilities.

BACKGROUND: JARID has a long and positive association with qualitative research dating back to its first issue. This paper looks at the development of qualitative methods and their application in the field of intellectual disability (ID). METHOD: When invited to make a contribution on qualitative research for the 25th Anniversary of JARID, the present authors considered the options. We examined the frequency with which qualitative studies have been published in three major intellectual disability journals over a decade, and we considered attempting a systematic review or a meta-synthesis. RESULTS: The volume of published studies has increased, but there were too many across a diverse range of topics for a systematic review of qualitative research in general; but not enough for a systematic review or meta-synthesis with a particular focus. However, there were many issues that needed to be aired. This paper therefore contains some critical reflections on the use of qualitative methods. CONCLUSION: If we want to hear the voices of people who have ID then we need appropriate ways to do this. Qualitative methods are playing an increasing role in bringing the unknown about people who have ID into the known. The approach plays a valuable role in informing us about the experiences and lives of people who have ID. However, we have identified many methodological issues which will need to be further explored. At the same time, we need to develop methods to enable increased participation of people who have ID in some aspects of research. The participatory paradigm is more established in qualitative approaches as it lends itself to participation in generating research questions, developing interview questions, conducting interviews and even stages of the analysis. There are clearly areas that need to be addressed by trained researchers and the whole process will need some facilitation and support. Writing up for journals is one aspect that could be very problematic: so other forms of dissemination need to be explored.

Why do some people with intellectual disability engage in offending behaviour and what can we do about it? Editorial.

BACKGROUND: The field of forensic intellectual disabilities has been developing rapidly over the last 15 years. Much of the work has been built on research in mainstream criminality but more recently studies have emerged that reveal issues specific to offenders with intellectual disability. METHOD: Research on pathways into offending is reviewed with reference to its relevance to the field of intellectual disability. We also summarize some findings on pathways into and through services for offenders with intellectual disability. FINDINGS: Studies reveal that developmental adversity is an important risk variable. Previous and recent aggression are potent risk factors. New evidence suggests that immediate, proximal risk factors may be more important in this client group. The studies in this issue add to the knowledge on pathways into offending, important areas for assessment and effective treatments as well as advancing knowledge in the academic literature on general criminality.

A comparison of anger in offenders and non-offenders who have intellectual disabilities.

BACKGROUND: There is growing evidence of the effectiveness of cognitive behavioural therapy to treat anger in offenders with intellectual disabilities. The aim is to lower anger levels; the rationale is that this will reduce recidivism. However, the hypothesis that anger levels amongst offenders are higher than non-offenders has not been tested. METHOD: The study utilizes a case-comparison design to examine whether levels of anger are higher amongst people with intellectual disabilities who have offended in comparison with those who have not offended. Anger levels are compared for 29 offenders with intellectual disabilities and 27 non-offenders with intellectual disabilities (all male). RESULTS: No differences were found between offenders and non-offenders on measures of anger. The offending group was shown to have higher levels of aggression. CONCLUSIONS: Results suggest that there is no difference in levels of anger between offender and non-offenders to begin with. The limitations of the study are discussed, but the implication of the study questions the legitimacy of the rationale to utilize anger treatment to reduce recidivism in offenders with intellectual disabilities.

What things make people with a learning disability happy and satisfied with their lives: an inclusive research project.

BACKGROUND: We looked at the research that other people have done about what makes people with a learning disability happy and satisfied with their lives. Researchers call being happy and satisfied with your life 'subjective well-being'. They found out that having things like money and good health does not always mean people are happy. They also found that some people are really happy, even if there are things in their lives they would like to change. None of the people who have done research about 'subjective well-being' have interviewed people with a learning disability about what makes them happy with their lives. MATERIALS AND METHODS: We have carried out a study about what makes people with a learning disability happy and satisfied with their lives. This report talks about the research that we did, and what we found out. We interviewed 20 people with a learning disability who said they were very happy and satisfied. We asked them about what things helped them feel like this. RESULTS: The people we spoke to said things like relationships, choice and independence, activities and valuable social roles made them feel satisfied with their lives. They told us about the things that enable them to lead happy lives, and the things that disable them. We also found out about the importance of personal characteristics. These are things like looking on the bright side of life or having ways to manage difficult emotions like sadness or anger. CONCLUSIONS: We found out that it is important for people with a learning disability to have good things in their lives, but it is also important to be enabled to access these good things.

Cognitive behavioural treatment for anger in adults with intellectual disabilities: a systematic review and meta-analysis.

BACKGROUND: The cognitive behavioural treatment for anger in adults with intellectual disabilities has received increasing interest. The current study aims to review the current literature and provide a meta-analysis. METHOD: A literature search found 12 studies eligible for the quality appraisal. The studies examined cognitive behavioural treatment for anger in adults with intellectual disabilities published since 1999. Nine studies were eligible to be included in the meta-analysis. RESULTS: The meta-analysis revealed large uncontrolled effect sizes for the treatment for anger in adults with intellectual disabilities, but is viewed with caution due to low sample sizes. The narrative review showed improved methodological quality of the literature. CONCLUSIONS: The emerging literature is encouraging. However, it is limited through concatenated data, a lack of comparative control groups and small study samples.

Assessing components of empathy in sex-offenders with intellectual disabilities.

BACKGROUND: Because of a lack of research investigating empathy in sex offenders with intellectual disabilities, this study explored empathy in sex offenders and non-offenders with intellectual disabilities. Specific aims were to explore differences between these groups on measures of the components of empathy. METHODS: The scores of 21 sex-offenders and 21 non-offenders with intellectual disabilities, matched by age, gender and IQ, were compared on the Test of Emotional Perception. RESULTS: No differences were found between the two groups across the components of empathy. However, sex offenders who had received treatment performed better on tasks of emotion recognition, emotion replication and response decision than the non-offenders. CONCLUSIONS: Further research is needed to understand empathy in sex offenders with intellectual disabilities before any recommendations can be made regarding treatment programmes.