Exploring how to deliver videoconference-mediated psychological therapy to adults with an intellectual disability during the coronavirus pandemic

Purpose The novel coronavirus and associated restrictions have resulted in mental health services across the UK having to adapt how they deliver psychological assessments and interventions. The purpose of this paper is to explore the accessibility and prospective acceptability of providing telephone and videoconference-mediated psychological interventions in individuals with intellectual disabilities. Design/methodology/approach As part of a service evaluation, a mixed-methods questionnaire was developed and completed by clients who had been referred for psychological therapy at an adult intellectual disabilities’ community health service in the north of England. All clients were assessed using the Red/Amber/Green (RAG) system by a consultant clinical psychologist for risk and potential suitability for indirect service delivery given their ability and needs. Findings Overall, 22 clients were invited to take part, of which, only seven (32%) were accepting of telephone or videoconference-mediated psychological therapy. Most of the clients were unable to engage in video-conference therapy and therefore, only suitable for phone therapy. This paper presents the remaining findings and discusses the clinical implications and unique considerations for intellectual disability services drawing on the existing literature. Originality/value This is the first paper that the authors are aware of, examining videoconference-mediated psychological therapy in this population. It is hoped the data will be used to help inform practice or policy when using such therapeutic approaches in adults with an intellectual disability

Telephone-delivered compassion-focused therapy for adults with intellectual disabilities: a case series

Purpose: Services are increasingly exploring the use of remote conferencing to deliver psychological interventions, which have become particularly important given the COVID-19 pandemic and infection control guidelines. This paper aims to explore the feasibility, acceptability and preliminary effectiveness of delivering psychological therapy remotely to adults with intellectual disabilities (ID). Design/methodology/approach: As part of routine practice within an adult ID community health service, this paper develops a six-session programme based on compassion-focused therapy (CFT) and delivered it to six clients. Clients completed the psychological therapy outcome scale for ID 2nd edition, at assessment, pre- and post-therapy, as well as a feasibility and acceptability measure. Findings: Six clients engaged in telephone therapy; four clients individually, while the remaining two were supported by their caregiver. Most clients found the intervention helpful, enjoyable and were pleased that they received telephone-delivered psychological therapy. A reduction was observed at post-therapy in distress (g = 0.33) and risk (g = 0.69). No difference was reported in psychological well-being. Five clients were subsequently discharged from psychological therapy. Originality/value: To the knowledge, this is the first study examining the use of telephone therapy (including CFT) for individuals with ID. Findings add to the growing evidence suggesting individuals with ID can benefit from receiving adapted psychological therapies. Research is required to further explore the effectiveness of remote-therapies, who would most likely benefit from this approach and how remote treatments could be used within existing pathways

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

Intense connection and love: The experiences of autistic mothers

Knowledge of how parenthood is experienced by autistic women is currently poor. Nine autistic mothers to children aged 5–15 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. All mothers considered at least one of their children to also be autistic. Four superordinate themes emerged: 1. Autism fundamentally impacts parenting; 2. Battle for the right support; 3. Development and acceptance; and 4. The ups and downs of parenting. The themes demonstrate that while motherhood is largely a joyful experience for autistic mothers (Themes 1 and 4), it is associated with specific issues unlikely to be found in neurotypical motherhood (Theme 1), including negotiating misunderstandings from others (Theme 2). The need for self-care and self-acceptance was expressed (Theme 3) with parenting resulting in personal growth and adaptation (Theme 3). Feelings of intense connection and closeness were experienced (Theme 4), though managing children’s needs had a profound personal impact (Themes 2 and 4). The findings demonstrate that service-providers would benefit from training, ideally led by autistic individuals, on how autism presents in adulthood, masking, the potential for mismatching between emotional experience and facial expression, sensory needs (especially in pregnancy), and the double empathy problem (Theme 2). This study represents the first systematic in-depth analysis of the experiences of autistic mothers presented from their own perspectives

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

How service‐users with intellectual disabilities understand challenging behaviour and approaches to managing it

Background This study explored understandings that service‐users with intellectual disabilities and challenging behaviour held around their behaviour, what shaped these understandings, and the relationship between how behaviours are managed and well‐being. Methods Eight participants (three female, five male) partook in individual semi‐structured qualitative interviews. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results Three master themes emerged from this analysis: (a) challenging behaviour can be explained via an internal or external frame of reference, with each framework having different implications for how participants attempted to manage behaviour. (b) Positive relationships provide a long‐term buffer to challenging behaviour, with positive relationships with family, staff and peers operating through different mechanisms to achieve this. (c) A greater ability to exert power and control in day‐to‐day life was perceived to reduce challenging behaviour in the long term. Conclusions Implications for practice are discussed

Views and experiences of people with intellectual disabilities regarding intimate relationships: a qualitative metasynthesis

The aims of this review were to systematically identify, critically appraise and synthesize the results of existing qualitative literature exploring the views and experiences of intimate relationships amongst people with intellectual disabilities. Fourteen peer-reviewed articles were identified through a systematic search of eight databases, reference lists, citations, and relevant journals. The identified articles were appraised for quality, then synthesized using a metaethnography approach. No study met all quality criteria and references to ethical approval were often lacking. Interpretation of the findings suggested three key themes: the meaning of intimate relationships, external constraints and facilitators, and managing external constraints. Though many people with intellectual disabilities desire and benefit from intimate relationships, they experience restrictions that others do not, which can lead to isolation and loneliness. Intimate relationships are not always necessarily linked with sexual behavior; therefore, intimate relationships warrant their own focus in future research, as well as in education and training for people with intellectual disabilities and their caregivers. Within this, a commitment to transparency over research processes is needed, in particular with reference to how ethical approval was obtained, since this has been a shortcoming of research with this focus to date

The impact of Covid-19 on access to psychological services

Purpose The novel coronavirus and associated mitigation efforts have produced barriers to accessing services for adults with intellectual disabilities. This paper aims to evaluate the impact of Covid-19 on access to psychological services. The paper evaluates monthly referral rates and psychological distress scores for service users awaiting therapy. Design/methodology/approach A quantitative service evaluation was completed in a psychology service based in the North of England which specialises in supporting adults with intellectual disabilities. A single case experimental design was used to examine the impact of events in March 2020 on referral rates. Descriptive statistics and effect size calculations were used to examine the impact of prolonged waiting times on psychological distress scores. Findings Referral rates were examined comparing a 5-year rolling average monthly referral rate for the 12 months prior to March 2020 with the 12 months following. Findings demonstrate that events starting in March 2020 have had a considerable impact on referral rates and rates have not recovered. Eight service users were contacted to determine the impact of prolonged waiting times with results demonstrating increases in psychological distress of large effect size. Originality/value This is the only paper the authors are aware of examining the impact of the coronavirus on access to services and psychological distress for adults with intellectual disabilities. It is hoped that these findings will be able to inform both policy and practice as services continue to navigate the pandemic

The treatment of auto-erotic asphyxiation in a man with severe intellectual disabilities: The effectiveness of a behavioural and educational programme

Background  The treatment of individuals with severe intellectual disabilities who engage in self‐injurious sexual practices and are incapable of giving consent poses a significant challenge to health care services. Treatment options can be highly personal and intrusive, and potentially pose a risk of litigation. However, there is also a risk of being prosecuted for negligence if necessary treatment is not pursued. This paper discusses the treatment of an individual engaged in such a behaviour – auto‐erotic asphyxiation. It describes how the legal aspects of the design and implementation of the treatment approach were handled. Methods  The treatment approach involved a behavioural and psycho‐educational programme. A single case study methodology was utilized in order to assess the effectiveness of the intervention. Results  The intervention led to the learning of new adaptive behaviour. Auto‐erotic asphyxiation ceased and the individual's masturbatory behaviour changed sufficiently to reduce the threat of mortality. Qualitatively, a significant reduction in the level of stress experienced by the individual's family was reported. Conclusions  It is concluded that behavioural and educational techniques may be effective in the management of such cases. Further research replicating such techniques with similar cases is required prior to the efficacy of this treatment becoming established