Facilitating transformative endings: Therapists' experience of ending therapy with people with intellectual disabilities-An interpretative phenomenological analysis.

BACKGROUND: Endings in therapy are discussed widely in mainstream literature, however, there is only a small amount of research that considers endings in therapy for people with intellectual disabilities. METHODS: Eight therapists were interviewed about their experience of ending therapy with people with intellectual disabilities. Interviews were analysed using Interpretative Phenomenological Analysis (IPA). RESULTS: Four superordinate themes associated with endings that go well were identified: 'recognising', 'readying', 'reframing' and reflecting', with a fifth theme reflecting endings that were less successful. Participants worked hard to offer transformative experiences of endings and an overarching 'super-superordinate' theme of 'facilitating transformative endings' encompassed the findings. CONCLUSIONS: Endings are a multi-faceted component of psychological therapy with people with intellectual disabilities and are significant for both client and therapist. We discuss implications for therapy adaptations and future research.

How do people with intellectual disabilities understand friendship? A systematic meta-synthesis.

BACKGROUND: Previous systematic reviews of the relationships of people with intellectual disabilities have included consideration of intimate relationships. In this paper, we report a systematic review of papers describing friendship only. METHOD: A systematic qualitative meta-synthesis of the research exploring experiences of friendship as reported by people with intellectual disabilities. RESULTS: Seven papers met the inclusion criteria for analysis. Three superordinate themes were identified. (1) Reciprocity, 'Someone who helps me, and I help them'. (2) The building blocks of friendships, 'I can tell her some secrets'. (3) Managing friendship difficulties, 'In real life it's much harder'. CONCLUSION: People with intellectual disabilities value friendship and actively engage in reciprocal exchanges. We explore the strengths and limitations of current research, clinical implications, and directions for future research.

Adapting psychological interventions for people with severe and profound intellectual disabilities: A behavioural activation exemplar.

BACKGROUND: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. METHOD: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. RESULTS: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities.

Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: Modelling and initial feasibility study.

BACKGROUND: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. METHOD: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. RESULTS: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. CONCLUSION: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted.

The experiences of therapists providing psychological treatment for adults with depression and intellectual disabilities as part of a randomised controlled trial.

BACKGROUND: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. METHOD: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. RESULTS: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. CONCLUSIONS: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Development and psychometric properties of a team formulation measure in intellectual disabilities services.

BACKGROUND: This article describes the development and use of the Formulation Understanding Measure to evaluate team formulation with staff supporting people with intellectual disabilities. METHOD: A quantitative design with an opportunistic sample was used to evaluate the psychometric properties of the Formulation Understanding Measure (FUM) including pre- and post-administration at case formulation workshops. The measure was developed based upon experience of delivering case formulation workshops and was administered alongside case formulation workshops with 347 staff team members. RESULTS: The measure was found to have acceptable psychometric properties with good internal reliability, a single principal component, and associations with training and demographic factors. It was also sensitive to changes resulting from case formulation workshops with the measure showing that staff increased in their understanding of the person with intellectual disability following a formulation workshop. CONCLUSIONS: The FUM will enable routine evaluation of team formulations and further studies in the area.

A review of the frequency and nature of adaptations to cognitive behavioural therapy for adults with Intellectual Disabilities.

BACKGROUND: There is increasing evidence that cognitive behavioural therapy (CBT) can be effective for people with intellectual disabilities. The aim of this review was to report the nature and frequency of adaptations reported in studies of CBT for people with intellectual disabilities. METHOD: This review updated and extended a previous review by (Whitehouse et al. 2006, J Appl Res Intellect Disabil, 19, 55), which used a framework of adaptations developed by (Hurley et al., 1998, J Dev Phys Disabil, 10, 365). Adaptations included simplification, language, activities, developmental level, use of directive style, flexible methods, involve caregivers, transference/countertransference and disability/rehabilitation approaches. A search identified peer-reviewed papers that reported individual CBT informed psychological interventions for people with an Intellectual Disability. RESULTS: The search identified 23 studies which met the inclusion criteria for review. Studies reported the majority of the categories of adaptation described by (Hurley et al., 1998, J Dev Phys Disabil, 10, 365). CONCLUSIONS: The results suggest that the framework of adaptations needs further development to increase sensitivity in identifying and categorizing adaptations of CBT. Increased, systematic reporting of adaptations to studies of CBT with people with intellectual disabilities is recommended.

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.

"Getting into it": People with intellectual disabilities' experiences and views of Behavioural Activation and Guided Self-Help for depression.

BACKGROUND: No studies have explored the acceptability of Behavioural Activation and Guided Self-Help interventions for depression with people who have intellectual disabilities. METHOD: Twenty-five participants were purposively sampled from participants taking part in a trial comparing Behavioural Activation with a Guided Self-Help intervention. A framework analysis was used to analyse interviews covering participants' expectations and views of therapy. RESULTS: Participants were largely positive about both interventions. However, they identified specific aspects of each intervention which they had found helpful. All participants valued the therapeutic relationship. The participants also had a number of criticisms and suggestions for improving the therapies. A common concern was the time-limited nature of the interventions and a wish for longer-term help. Overall, both sets of participants felt the interventions had relevance for their wider lives. CONCLUSIONS: The participants reported having positive engagement with the therapies but expressed a wish for longer-term supportive relationships.

Supporting people with intellectual disabilities in psychological therapies for depression: A qualitative analysis of supporters' experiences.

BACKGROUND: Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters' experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self-help therapies for depression. METHOD: Twenty-one purposively sampled supporters were interviewed. The semi-structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes. RESULTS: Supporters were positive about both therapies and reported both therapy-specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions' effectiveness, and helped establish closer relationships to the people they were supporting. CONCLUSIONS: The presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population.

The relationship between the therapeutic alliance and clinical outcomes in cognitive behaviour therapy for adults with depression: A meta-analytic review.

Research consistently provides evidence for the relationship between the therapeutic alliance (TA) and outcome across various therapies and presenting problems. Depression is considered the leading cause of disability worldwide, and there is substantial evidence for the efficacy for Cognitive Behaviour Therapy (CBT) in its treatment. At present, there is lack of clarity specifically about the relationship between the TA and outcome in CBT for depression. The present review is the first meta-analytic review to explore this relationship and also considering moderators. Within a random-effects model, an overall mean effect size of r = 0.26 (95% CI [.19-.32]) was found, indicating that the TA was moderately related to outcome in CBT for depression. The mean TA-outcome correlation is consistent with existing meta-analysis that looked across a broad range of presenting problems and psychological therapies. A secondary exploratory analysis of moderators suggested the TA-outcome relationship varied according to the TA rater, where the relationship was weaker for therapist raters compared with clients and observer raters. Additionally, the results indicated that the TA-outcome relationship marginally increased over the course of CBT treatment. The results of the meta-analysis are discussed in reference to the wider body of research, methodological limitations, clinical implications, and future directions for research.

Social anxiety and parental overprotection in young adults with and without intellectual disabilities.

OBJECTIVES: Developmental literature highlights peer relationships and parental overprotection as factors implicated in the development of social anxiety. These factors are highly prevalent in the lives of people with intellectual disabilities; however research has not examined whether these factors are associated with social anxiety for this population. METHODS: Twenty-one individuals without intellectual disabilities and 21 individuals with intellectual disabilities (aged 16-24 years) completed the Social Anxiety Scale for Adolescents with follow-up questions, the Glasgow Anxiety Scale-Intellectual disabilities and the parental overprotection subscale of the Parental Bonding Instrument with follow-up questions. RESULTS: Aspects of general and social anxiety were significantly greater in the intellectual disabilities group. There were no significant differences in parental overprotection between groups, however, qualitative analyses revealed differences in experiences of social anxiety and parental overprotection. CONCLUSIONS: Further research into factors associated with social anxiety in people with intellectual disabilities may inform adaptations to therapies and early intervention.

Training therapists to work with people with intellectual disability in Improving Access to Psychological Therapies (IAPT) services.

BACKGROUND: Current policy in the England suggests that people with intellectual disabilities should, where possible, access mainstream mental health services; this should include access to mainstream therapy services. It is likely that mainstream therapists will need training and support to work with people with intellectual disabilities. METHOD: Sixty-eight therapists working in an English Improving Access to Psychological Therapies (IAPT) service received one- or 2-day training on working with people with intellectual disabilities. Measures of confidence, general therapeutic self-efficacy and attitudes to people with intellectual disabilities' use of mainstream mental health services were completed pre-training, post-training and at 3-month follow-up; at which time, 12 participants were interviewed about the impact of the training on their practice. RESULTS: There was a significant positive change in all measures immediately post-training which was maintained at 3-month follow-up. CONCLUSIONS: Training considerations for mainstream therapists who may work with people with intellectual disabilities are discussed.

Assessing Feasibility and Acceptability of Web-Based Enhanced Relapse Prevention for Bipolar Disorder (ERPonline): A Randomized Controlled Trial.

BACKGROUND: Interventions that teach people with bipolar disorder (BD) to recognize and respond to early warning signs (EWS) of relapse are recommended but implementation in clinical practice is poor. OBJECTIVES: The objective of this study was to test the feasibility and acceptability of a randomized controlled trial (RCT) to evaluate a Web-based enhanced relapse prevention intervention (ERPonline) and to report preliminary evidence of effectiveness. METHODS: A single-blind, parallel, primarily online RCT (n=96) over 48 weeks comparing ERPonline plus usual treatment with "waitlist (WL) control" plus usual treatment for people with BD recruited through National Health Services (NHSs), voluntary organizations, and media. Randomization was independent, minimized on number of previous episodes (<8, 8-20, 21+). Primary outcomes were recruitment and retention rates, levels of intervention use, adverse events, and participant feedback. Process and clinical outcomes were assessed by telephone and Web and compared using linear models with intention-to-treat analysis. RESULTS: A total of 280 people registered interest online, from which 96 met inclusion criteria, consented, and were randomized (49 to WL, 47 to ERPonline) over 17 months, with 80% retention in telephone and online follow-up at all time points, except at week 48 (76%). Acceptability was high for both ERPonline and trial methods. ERPonline cost approximately £19,340 to create, and £2176 per year to host and maintain the site. Qualitative data highlighted the importance of the relationship that the users have with Web-based interventions. Differences between the group means suggested that access to ERPonline was associated with: a more positive model of BD at 24 weeks (10.70, 95% CI 0.90 to 20.5) and 48 weeks (13.1, 95% CI 2.44 to 23.93); increased monitoring of EWS of depression at 48 weeks (-1.39, 95% CI -2.61 to -0.163) and of hypomania at 24 weeks (-1.72, 95% CI -2.98 to -0.47) and 48 weeks (-1.61, 95% CI -2.92 to -0.30), compared with WL. There was no evidence of impact of ERPonline on clinical outcomes or medication adherence, but relapse rates across both arms were low (15%) and the sample remained high functioning throughout. One person died by suicide before randomization and 5 people in ERPonline and 6 in WL reported ideas of suicide or self-harm. None were deemed study related by an independent Trial Steering Committee (TSC). CONCLUSIONS: ERPonline offers a cheap accessible option for people seeking ongoing support following successful treatment. However, given high functioning and low relapse rates in this study, testing clinical effectiveness for this population would require very large sample sizes. Building in human support to use ERPonline should be considered. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 56908625; http://www.isrctn.com/ISRCTN56908625 (Archived by WebCite at http://www.webcitation.org/6of1ON2S0).

Employed Carers' Empathy Towards People with Intellectual Disabilities: The Development of a New Measure and Some Initial Theory.

BACKGROUND: This study aimed to develop a self-report measure of paid caregivers' empathy towards people with intellectual disabilities. MATERIALS AND METHODS: Following questionnaire develop-ment, 194 staff working in services for people with intellectual disabilities completed self-report questionnaires, including the new empathy measure. The measure's factor structure and psychometric properties were investigated. RESULTS: A three factor solution suggested two key processes in empathizing: experiencing commonality between one's own and people with intellectual disabilities' psychological experiences and efforts to attune to their internal worlds. The final factor represented whether carers find it challenging to empathize. Correlations with beliefs about the self and others in caregiving relationships provided initial evidence of validity, although further investigation is needed. CONCLUSIONS: The most salient processes in empathizing with people with intellectual disabilities may be different from empathy in other contexts. Establishing determinants of carer empathy may facilitate the development of psychological interventions to promote and enhance this important quality.

Using Questions in Cognitive Therapy with People with Intellectual Disabilities.

BACKGROUND: There is increasing interest in the provision of cognitive behaviour therapy (CBT) to people with intellectual disabilities. A small number of studies have begun to address therapy process issues. AIMS: The aim of this paper is to contribute to process research through the development of a taxonomy of question types for use in analysing therapy interactions in CBT for people with intellectual disabilities. METHOD: A taxonomy of CBT question types was adapted and applied to the transcriptions of session 4 and 9 of 15 CBT therapy dyads. RESULTS: The taxonomy was reliably applied to the data. Therapists used significantly more questions in session 4 than in session 9, therapists used fewer questions in the final quarter of all sessions, and therapists used more questions with people with higher IQ scores in session 4 but not in session 9. CONCLUSIONS: The taxonomy of questions is reliable and may be used in future studies of CBT therapy process with people with intellectual disabilities.

The Development of a Measure of Confidence in Delivering Therapy to People with Intellectual Disabilities.

UNLABELLED: Current policy in UK health services emphasizes that, where possible, people with intellectual disabilities should access the same services as people without intellectual disabilities. One of the barriers to this is the confidence of clinicians and therapists. In this paper, we report on the development of a scale to describe the confidence of therapists in working with people with intellectual disabilities (the Therapy Confidence Scale-Intellectual Disabilities [TCS-ID]). One-hundred and eighty-one therapists who provided talking therapies but who did not work primarily with people with intellectual disabilities completed the scale; 43 people completed the scale twice for test-retest reliability purposes. One-hundred and seven people also completed a scale of general therapy self-efficacy. The TCS-ID has a single factor structure accounting for 62% of the variance, Cronbach's alpha for the scale is 0.93 and test-retest reliability is 0.83. There are significant differences in confidence based upon participants experience in working with people with intellectual disabilities and their therapeutic orientation, and there is a significant association between the TCS-ID and the General Therapy Self-efficacy Scale. Sixty clinicians working in mainstream mental health services received training on adapting their therapeutic approaches to meet the needs of people with intellectual disabilities. The TCS-ID was used pre-training and post-training and demonstrated a significant increase in confidence for all group. We suggest that the scale has good psychometric properties and can be used to develop an understanding of the impact of training for mainstream therapist in working with people with intellectual disabilities. KEY PRACTITIONER MESSAGE: There is increasing emphasis on people with intellectual disabilities receiving services from mainstream mental health services. There is no research describing the experiences and outcomes of people with intellectual disabilities receiving mainstream talking therapy services. The confidence that clinicians have in working with people with intellectual disabilities may be a barrier to them receiving mainstream services. The Therapy Confidence Scale-Intellectual Disabilities is a psychometrically sound scale for measuring the confidence of therapists in working with people with intellectual disabilities and is a useful outcome measure for training clinicians to work with people with intellectual disabilities.

Identifying training needs for mainstream healthcare professionals, to prepare them for working with individuals with intellectual disabilities: a systematic review.

BACKGROUND: Research suggests there is a high prevalence of physical and mental ill health among individuals with intellectual disabilities and that staff working in mainstream healthcare services lack knowledge, skills and positive attitudes in supporting this client group. This review aimed to locate, extract themes from and evaluate the current literature that had assessed the training needs of mainstream health professionals within this area. METHODS: This review utilized a mixed-methods approach, with systematic elements used to locate and evaluate the literature (n = 13) and a narrative approach used to explore patterns and themes identified. The search was completed across four databases, using the search terms felt most likely to capture the relevant literature. RESULTS: Three main themes of perceived training need were identified across a range of professional groups: general communication, knowledge/information and profession-specific needs. CONCLUSIONS: This review highlights the existing themes of training needs as identified by mainstream healthcare staff. It would appear that it may be possible to produce a core training package, suitable across professions with elements that are profession specific and therefore tailored accordingly. Limitations of the literature are explored within this review, as are recommendations for the directions of future research.

Exploring Carers' Judgements of Responsibility and Control in Response to the Challenging Behaviour of People with Intellectual Disabilities.

BACKGROUND: This study examines Weiner's recent cognitive emotional model which makes a distinction between judgements of control and responsibility and emphasizes the moderation of control by 'mitigating' factors. METHOD: In response to four vignettes describing two conditions of control (high or low) and mitigating factors (present or absent), questionnaires rating judgements of responsibility and emotional responses (anger and sympathy) were completed by 52 care staff. RESULTS: Analysis of the data for sympathy demonstrated that attributions of control were moderated by communication ability and that the effect of control upon sympathy was mediated by the judgement of responsibility. CONCLUSIONS: The data offer tentative support Weiner's account of the mitigation of control attributions in making responsibility judgements and their subsequent effects on emotional responses. Implications for research and clinical work are discussed.

Staff expectations and views of cognitive behaviour therapy (CBT) for adults with intellectual disabilities.

BACKGROUND: The role of support workers and other professionals in the psychotherapeutic process has been commented upon but not as yet been systematically investigated. METHOD: To explore their views and expectations of cognitive behaviour therapy (CBT) for adults with intellectual disabilities, eleven paid support workers and professionals were recruited and interviewed before the CBT sessions commenced for their service users and nine took part in the second interview that took place after nine sessions. RESULTS: Thematic Analysis of the interview transcripts indicates that staff members do not perceive CBT as a long-term solution for psychological problems have little knowledge of CBT and do not feel included in the process. Nevertheless, after nine sessions, most participants reported improved psychological well-being for their service users and expressed a wish for longer-term involvement of the therapist. CONCLUSIONS: The results suggest that for CBT to be effective in the longer term, the therapist is required to consider a wider systemic approach including staff training and supervision, staff and management consultancy and creating a delicate balance between confidentiality and sharing the psychological formulation with 'significant others' to ensure maintenance and generalisation of improved psychological well-being.