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  • Psychodynamic psychotherapy in severe and profound intellectual disability

    Purpose: Psychodynamic psychotherapy is increasingly adapted and used with individuals with intellectual disability (ID) and mental health difficulties. However, the evidence base is still small and largely based on case studies and small trials whose participants mainly have mild to moderate ID. This paper aims to review and critique the literature in regards to the adaptations; and the effectiveness of psychodynamic psychotherapy for those with severe and profound ID. Design/methodology/approach: A systematic literature search of PsycINFO, Social Policy and Practice, Medline, Cumulative Index to nursing and allied health literature and applied social sciences index and abstracts was conducted. Six studies met inclusion criteria and underwent a quality evaluation and critical review. Findings: Six papers (all case studies) met inclusion criteria and underwent a quality evaluation and critical review. Some adaptations to therapy were reported, such as a more flexible therapeutic frame and increased use of the physical environment as a therapeutic tool. Due to significant methodological weaknesses of the included studies, it is yet unclear whether psychodynamic psychotherapy is an effective intervention for individuals with severe and profound ID. Research limitations/implications: Only a small number of case studies met the inclusion criteria. Further research should use more robust outcome measures, larger samples and compare psychodynamic psychotherapy to alternative interventions. Originality/value: This paper is the first to review the psychodynamic psychotherapy literature with regard to its effectiveness as a treatment specifically for individuals with severe and profound ID and mental health difficulties.

  • DBT and intellectual disabilities: the relationship between treatment fidelity and therapeutic adaptation

    Purpose: There is growing literature on the application of Dialectical Behaviour Therapy (DBT) with adults with intellectual disabilities (IDs). To draw upon the evidence-base from mainstream approaches, adapted interventions must remain true to their theoretical foundations and retain key components. The purpose of this paper was to establish the extent to which DBT has been adapted for adults with ID, and whether existing adapted protocols can still be considered DBT. Design/methodology/approach: The theoretical underpinnings and key components of DBT were identified. Six DBT studies were critiqued according to these criteria. Findings: In terms of content, only one intervention comprised all necessary elements. All of the remaining interventions included a skills group; two included individual therapy and another two included group consultation. None of the remaining interventions provided 24-h telephone support. Furthermore, none of the studies explicitly described using dialectical strategies. Originality/value: To the best of the authors’ knowledge, this is the first paper to critically examine the evidence-base for the use of DBT in ID, particularly its fidelity.

  • Does training adequately equip psychiatrists for intellectual disability?

    Purpose: People with intellectual disability (ID) experience significant health and social inequality compared to their non-disabled peers. Individuals with ID who access mental health services can have complex comorbidities and presentations. In the UK, a significant proportion of individuals with ID are supported within general adult mental health services not by specialist ID teams. The purpose of this study is to explore whether psychiatry trainees in the Maudsley Training Programme (MTP) feel adequately skilled to support individuals with ID. Design/methodology/approach: An online survey of trainee psychiatrists in the MTP was completed to evaluate self-perceived skills and knowledge in the care of individuals with ID in mental health services. Statistical analysis of the results was completed. Findings: Experience of working in specialist ID teams is positively associated with greater confidence and skills among trainees in the care of people with ID; this is beyond what would be expected based on seniority alone. Research limitations/implications: The response rate was 16.7 per cent; a larger sample size would add strength to the study. Like all online surveys, there exists the risk of selection bias. Practical implications: UK Policy states that people with ID should be supported to access mainstream services where possible, including psychiatric care. Practical experience for all psychiatry trainees involving specialist ID services and people with ID could improve the care given to that particularly disadvantaged group. Originality/value: This is the only paper known to the authors that has focused specifically on the skills and knowledge of psychiatry trainees in the UK with regards to ID.

  • Dynamic support database clinical support tool: inter-rater reliability

    Purpose: The dynamic support database (DSD) clinical support tool structures the risk of admission rating for individuals with intellectual disabilities. This study aims to investigate inter-rater reliability between multi-disciplinary health care professionals within the North West of England. Design/methodology/approach: A small-scale quantitative study investigated reliability between raters on the DSD clinical support tool. A data set of 60 rating tools for 30 individuals was used. Descriptive statistics and Kappa coefficient explored agreement. Findings: The DSD clinical support tool was found to have strong inter-rater reliability between individual items and the differences between individual scores were spread suggesting variance found could not be attributed to specific questions. Strong inter-rater reliability was found in the overall ratings. Research limitations/implications: Results suggest the DSD clinical support tool provides stratification for risk of admission ratings independent of who completes it. Future studies could investigate inter-rater reliability between organisations, i.e. health and social care professionals, and use a larger data sample to ensure generalisability. Replication of the study within child and adolescent services using the children’s DSD clinical support tool is also recommended. Originality/value: The DSD clinical support tool has been implemented within the child and adult intellectual disability services across the North West. As more teams across England consider its implementation, the study provides reassurance that coding agreement is high, allowing for stratification for risk of admission independent of the rater.

  • An exploratory factor analysis of HONOS-LD scales

    Purpose: The purpose of this study is to identify clinically meaningful groups of Health of the Nation Scales Learning Disabilities (HONOS-LD) single-item scales that might be used as short scales that are more reliable than single-item scale scores and more focused than the sum of scale scores. The single-item scales are likely to be unreliable in many applications. The sum of scale scores is a heterogeneous measure that is not a good representative of any specific difficulties that people who have intellectual disabilities may have and the effects of interventions on any specific difficulties may be masked by fluctuations in the ratings of other scales. Design/methodology/approach: A total of 2,109 pseudonymised complete HONOS-LD ratings were factor-analysed using principal factor extraction and oblimin rotation. Three-, four- and five-factor rotated patterns were examined. Findings: Three factors that each have three or more strong loadings (≥|0.50|) were identified that jointly included 11 single-item scales: one representing problems with cognitive competencies, one representing depressive phenomena or other mood problems and one representing problems with social competencies. A weaker factor that represents behaviour that challenges services is indicated; it includes five single-item scales. Both the cognitive competencies and social competencies groups of items were also reported in a previous study by Skelly and D’Antonio (2008) and may be stable. The present study’s factor representing behavioural difficulty has some similarity to Skelly and D’Antonio’s “functional behaviour and attachment disturbance” group. In other respects, the present study and the previous study differ. Research limitations/implications: The outcomes of these factor analyses indicate that some of the single-item scales can be combined into groups. However, the specific groups found in this study must be regarded as possibly unstable because of the likelihood of weak inter-rater reliability in HONOS-LD data and differences between this analysis and Skelly and D’Antonio’s. Further research is needed to support or modify them. Practical implications: The cognitive competence and social competence groups of items may be used as subscales if they are convenient. The groups representing mood and behavioural problems should be supported by further research before being used. Originality/value: This is the second published factor analysis of the HONOS-LD and includes a much larger data set than the first. It has some similarities to and differences from the first and is a further step in the process of identifying useful groupings of HONOS-LD single-item scales.

  • Knowledge of mental capacity assessment in staff working with people with learning disabilities

    Purpose: The purpose of this paper is to evaluate staff knowledge of Mental Capacity Act (MCA) capacity assessments within the Learning Disabilities division of a Mental Health and Learning Disabilities Trust. The limited research available suggests staff knowledge tends to be poor, particularly concerning who is the decision maker. Design/methodology/approach: A 12-item multiple choice questionnaire, which reflects the five core principles of MCA (2005), was developed. Questionnaires were completed by 262 health and social staff members who support people with LD. Findings: Results show high variability of MCA capacity assessment knowledge within the LD division. However, qualified staff and those from health services scored significantly higher across all categories on the questionnaire compared to non-qualified and social care staff, respectively. On average, all staff scored poorly when asked to identify “who is the decision maker?” in a case scenario question. Research limitations/implications: The main limitation is that we did not collect data on how many previous capacity assessments and discussions each person had been involved with. The findings clearly suggest current methods of training lack efficacy in helping staff apply MCA knowledge to their clinical work. Originality/value: Compared to past literature, this study utilised a novel and more comprehensive questionnaire. This focused on case scenario questions to assess staff situational judgement. In addition, the findings add to a sparse evidence base that provides a foundation for future research.

  • Self-reported experiences of intimate partner violence in a female forensic intellectual disability population

    Purpose: Intimate partner violence (IPV) is a complex public health and social issue. Women with an intellectual disability (ID) are at greater risk of experiencing IPV. However, little is known about the IPV experiences of women with an ID and forensic care needs. The purpose of this paper is to explore the history of experienced and perpetrated IPV in women detained to secure specialist ID forensic service. Design/methodology/approach: Participants completed the Conflict Tactics Scale-2 (CTS-2, Straus et al., 1996). The CTS-2 measures experienced and perpetrated relationship tactics of common forms of IPV. Findings: Participants reported high levels of experiencing and perpetrating IPV across all relationship tactics measured by the CTS-2. Participants reported they engaged in similar levels of experiencing and perpetrating positive and negative relationship tactics. The only significant difference was “minor sexual coercive behavior” where participants were significantly more likely to experience than perpetrate this behaviour. Research limitations/implications: Further research exploring the risk factors that contribute to IPV is needed. Shortcomings in the current study are acknowledged. Practical implications: Women with an ID and forensic profiles may present with treatment needs as victims and perpetrators of IPV. Clinical activities of women in Forensic ID services should include possible IPV care needs. The importance of developing national guidance and interventions to prevent and manage IPV are discussed. Originality/value: This is the first paper, to the authors’ knowledge, to explore experiences of IPV in women with an ID and forensic care needs.

  • A case to ruminate on: vomiting and weight loss in intellectual disability and autism

    Purpose: The purpose of this paper is to review a case of a man with intellectual disability, autism and challenging behaviour who presented with vomiting, regurgitations and significant weight loss. Design/methodology/approach: The paper examines the case history and identifies challenges contributing to symptom classification and management of a patient with intractable vomiting, regurgitations and significant weight loss. Findings: This case illustrates the importance of the multidisciplinary team working required to reduce morbidity and risk of mortality, as well as highlighting some of the challenges associated with coordinating different approaches from different agencies. Pharmacological management did not result in lasting symptom resolution in this case. Difficulties in establishing diagnostic certainty and consideration of whether symptoms could be consistent with rumination syndrome are also discussed. The value of consistent implementation of positive behavioural support is also demonstrated. Originality/value: The rapid and dangerous weight loss described in this case is associated with adverse physical health outcomes and has generated significant anxiety resulting in extensive liaison between primary and secondary mental and physical health services. Additionally, it considers whether the symptoms could be attributed to the relatively rare diagnosis of rumination syndrome which is historically underdiagnosed.

  • Current evidence for the identification and management of premenstrual syndrome in women with intellectual disabilities: a systematic review

    Purpose: Intellectual disability (ID) is prevalent in 1 per cent of the population. Premenstrual syndrome (PMS) affects up to 5 per cent of the general population of adult women. Identification of PMS is challenging in women with ID due to differences in communication. Management of PMS in the ID population requires careful consideration of baseline function, co-existing mental and physical health problems, drug interactions as well as complex ethical considerations. The paper aims to discuss this issue. Design/methodology/approach: Prospero-registered systematic review (CRD42019119398) of papers exploring the diagnosis and management of patients with PMS and ID (n=414). In total, 35 relevant titles were identified and 27 full text papers were assessed for eligibility, resulting in 10 studies for final qualitative analysis. Findings: Ten original research papers were included. There are no standardised symptom criteria for diagnosis of PMS in women with ID. Studies relied on observer-reported data. All papers demonstrated higher rates of PMS in women with ID compared with the general adult population. Management was not standardised and varied between centres. Mainstays of treatment included non-steroidal anti-inflammatories, combined oral contraceptive pills and intramuscular progesterone. Newer evidence suggests levonorgestrel intrauterine systems may be appropriate. There was no quantitative method of establishing success of management. Practical implications: A modified symptom diary should be used for diagnosis in this population. Differentiation between cyclical behavioural change due to pain vs mood disturbance remains challenging. Conservative, psychological and medical management should be the mainstay of treatment, with surgery considered in exceptional cases. Originality/value: This paper demonstrates the current limited evidence for the management of PMS in women with a diagnosis of ID and offers an overview of the current options for managing these patients’ symptoms.

  • Enhancing care: simplified clinic letters

    Purpose: The purpose of this paper is to examine the content and style of clinic letters written by psychiatrists and to compare these with national guidelines and standards. To then consider the impact that writing directly to patients and carers has on their feeling of inclusion and understanding via a questionnaire. Design/methodology/approach: Two audits were completed, the first was carried out in 2012 and the second during 2014 with both being over a three-month period. The first 50 clinic letters sent out during these periods were examined using an audit tool that was developed using national standards from the Department of Health and the Royal College of Psychiatrists. A questionnaire was then devised in 2016 and sent to patients and carers regarding their views on the simplified clinic letters that were written directly to them. Findings: In the original audit none of the letters were simplified and written to the patient whereas in the re-audit 66 per cent were simplified. The questionnaire sent out to patients and carers revealed that 50 per cent of patients felt that the simplified letter helped them to feel more included and gave them a better understanding of their care. Originality/value: This paper highlights the potentially positive impact of writing simplified clinic letters directly to patients with intellectual disability and their carers. It also includes a clinic letter format designed so that medical information is not lost in the written communication and so that the service’s workload is not impacted on by having to write two separate letters to the patient and to their GP.

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