Predictors and moderators of the response of adults with intellectual disabilities and depression to behavioural activation and guided self-help therapies.

BACKGROUND: No previous studies have reported predictors and moderators of outcome of psychological therapies for depression experienced by adults with intellectual disabilities (IDs). We investigated baseline variables as outcome predictors and moderators based on a randomised controlled trial where behavioural activation was compared with guided self-help. METHODS: This study was an exploratory secondary data analysis of data collected during a randomised clinical trial. Participants (n = 161) were randomised to behavioural activation or guided self-help and followed up for 12 months. Pre-treatment variables were included if they have previously been shown to be associated with an increased risk of having depression in adults with IDs or have been reported as a potential predictor or moderator of outcome of treatment for depression with psychological therapies. The primary outcome measure, the Glasgow Depression Scale for Adults with Learning Disabilities (GDS-LD), was used as the dependant variable in mixed effects regression analyses testing for predictors and moderators of outcome, with baseline GDS-LD, treatment group, study centre and antidepressant use as fixed effects, and therapist as a random effect. RESULTS: Higher baseline anxiety (mean difference in outcome associated with a 1 point increase in anxiety 0.164, 95% confidence interval [CI] 0.031, 0.297; P = 0.016), lower performance intelligence quotient (IQ) (mean difference in outcome associated with a 1 point increase in IQ 0.145, 95% CI 0.009, 0.280; P = 0.037) and hearing impairment (mean difference 3.449, 95% CI 0.466, 6.432; P = 0.024) were predictors of poorer outcomes, whilst greater severity of depressive symptoms at baseline (mean difference in outcome associated with 1 point increase in depression -0.160, 95% CI -0.806, -0.414; P < 0.001), higher expectation of change (mean difference in outcome associated with a 1 point increase in expectation of change -1.013, 95% CI -1.711, -0.314; p 0.005) and greater percentage of therapy sessions attended (mean difference in outcome with 1 point increase in percentage of sessions attended -0.058, 95% CI -0.099, -0.016; P = 0.007) were predictors of more positive outcomes for treatment after adjusting for randomised group allocation. The final model included severity of depressive and anxiety symptoms, lower WASI performance IQ subscale, hearing impairment, higher expectation of change and percentage of therapy sessions attended and explained 35.3% of the variance in the total GDS-LD score at 12 months (R2  = 0.353, F4, 128  = 17.24, P < 0.001). There is no evidence that baseline variables had a moderating effect on outcome for treatment with behavioural activation or guided self-help. CONCLUSIONS: Our results suggest that baseline variables may be useful predictors of outcomes of psychological therapies for adults with IDs. Further research is required to examine the value of these potential predictors. However, our findings suggest that therapists consider how baseline variables may enable them to tailor their therapeutic approach when using psychological therapies to treat depression experienced by adults with IDs.

"Connectedness" between people with intellectual disabilities and challenging behaviour and support staff: Perceptions of psychologists and support staff.

The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have 'a real connection' with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections.

Facial attraction: an exploratory study of the judgements made by people with intellectual disabilities.

BACKGROUND: Although romantic or sexual attraction is a major research topic in the general population, little is known about people with intellectual disabilities' (ID) views of attractiveness. METHODS: Fifty-eight participants (16-40 years) took part in this exploratory study, 29 with ID and 29 without ID. Participants were shown 50 images of men or women's faces and asked to rate how attractive they thought the faces were. RESULTS: A strong association was found between what men and women with ID and those without ID considered attractive in romantic partners. However, people with ID were more likely to consider themselves desirable to others. CONCLUSIONS: The findings suggest that people with mild ID make the same subtle judgements about facial attraction as other individuals.

Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in the Netherlands.

BACKGROUND: During the first COVID-19 lockdown period, various restrictions led to diminished access to both educational and professional support systems for children with an intellectual disability and their families. The aim of this study was to explore the experiences and needs of parents caring for a child with an intellectual disability during the first lockdown period in the Netherlands. METHOD: Five mothers caring for a child with an intellectual disability participated in this qualitative study. The participants were interviewed using a semi-structured interview guide. The interviews lasted between 26 and 48 min. The interview recordings were transcribed verbatim, and the transcripts were analysed thematically. RESULTS: Three overarching themes emerged: (1) We need to stay healthy, which centres on the mother's urge to protect their child's well-being; (2) We make it work, which provides insight into how the mothers were handling the drastic changes in their family; and (3) My child's and family's place in the world, which focuses on the mothers' experienced position in the world around them. CONCLUSIONS: The current study provides valuable insights into the experiences and needs of mothers caring for a child with an intellectual disability during the COVID-19 pandemic.

The willingness of UK adults with intellectual disabilities to take COVID-19 vaccines.

BACKGROUND: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue. METHOD: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. RESULTS: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic. CONCLUSIONS: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice.

Family-based social capital of emerging adults with and without mild intellectual disability.

BACKGROUND: Family is recognised as an important context for the self-development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self-report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. METHODS: Fifty-three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method - Intellectual Disability (FNM-ID). Data from the FNM-ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM-ID social network measures. RESULTS: Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. DISCUSSION: The family-based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.

Leaving school: a comparison of the worries held by adolescents with and without intellectual disabilities.

BACKGROUND: Leaving school is an important time for adolescents, with increasing autonomy and developing adult identities. The present study sought to shed light on the content and emotional impact of worries amongst adolescents with and without intellectual disabilities (IDs) at this time of change. METHODS: Twenty-five adolescents with mild to moderate IDs and 27 adolescents without IDs, aged 15 to 18 years, took part in the study. Participants' worries were elicited using a structured interview. The levels of rumination and distress related to their most salient worries were also examined, along with their self-reported levels of anxiety. RESULTS: Content analysis of the interviews identified differences between the worries of the two groups of participants, with the adolescents with IDs expressing more general worries about failure and personal threat. Level of distress about worries was positively correlated with anxiety in both groups. The adolescents with IDs were significantly more anxious than their non-disabled peers. CONCLUSIONS: The differences between the groups' worries may be linked to differences in life experience and expectations. Consideration should be given to the specific worries of adolescents at the stage of leaving school. Doing so may allow solutions for their concerns to be identified, thus easing distress and leading to a less stressful transition.

A preliminary controlled trial of a trans-diagnostic programme for cognitive behaviour therapy with adults with intellectual disability.

BACKGROUND: Several studies have found a heightened prevalence of mental health disorders in people with intellectual disabilities (ID). There have been a number of successful case series and two promising controlled treatment trials of cognitive behaviour therapy (CBT) for emotional disorders (excluding anger) for people with ID. Several authors have promoted the development of trans-diagnostic approaches to cognitive treatment. The present study extends this work with the development and evaluation of a trans-diagnostic treatment manual for CBT in people with ID. METHOD: A controlled treatment trial was conducted with 12 participants in treatment and waiting list control data. Each treatment participant was matched to a control on age, IQ, presenting problem, and Brief Symptom Inventory (BSI) global severity index (GSI) score. The treatment group was also evaluated on the Glasgow anxiety and depression scales and was followed up for 3 to 6 months after treatment. RESULTS: There were no significant differences between groups at baseline. Following treatment, the CBT group was significantly improved when compared with the control group on the GSI scale of the BSI. The ancovas for all other measures were not significant but there were significant improvements for the treatment group on all scaled except BSI depression from pre to post-CBT. Gains were maintained to follow up, and changes were associated with large effect sizes. CONCLUSIONS: It was possible to treat a range of symptoms and psychiatric diagnoses with a general trans-diagnostic CBT manual. The effects of therapy were promising, suggesting that the participants could respond to treatment in a meaningful and helpful manner and supporting the case for further evaluation of the trans-diagnostic approach in ID.

A feasibility study of behavioural activation for depressive symptoms in adults with intellectual disabilities.

BACKGROUND: Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. METHOD: This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. RESULTS: Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size (r = 0.78), that was maintained at follow-up (r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size (r = 0.7). Once again, this positive change was maintained at follow-up (r = 0.72). CONCLUSIONS: The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its effectiveness, with more sensitive measurement of change in activity.

'It's made all of us bond since that course ' - a qualitative study of service users' experiences of a CBT anger management group intervention.

BACKGROUND: People with intellectual disabilities (ID) are rarely asked about their experiences as users of psychological services and little is known about the views of clients with ID who have undergone cognitive behavioural therapy (CBT). This study aimed to gather the views of adults with ID who had recently taken part in a cluster randomised control trial (RCT) of a staff-delivered manualised CBT anger management group intervention. METHOD: A qualitative method, Interpretative Phenomenological Analysis (IPA), was employed and eleven participants were interviewed. The interviews took place after the intervention, within two weeks of the end of the group, to gain an understanding of service users' experiences of participating in a CBT group. RESULTS: IPA of the interview transcripts indicated that the intervention was experienced as effective and enjoyable and a number of themes were identified including: 'the importance of relationships', 'a new me', 'new and improved relationships', 'presenting myself in a positive light' and 'what the group didn't change'. CONCLUSIONS: The results will be discussed in the context of applying group CBT for adults with ID and implications for service development.

Cognitive behavioural anger management intervention for people with intellectual disabilities: costs of intervention and impact on health and social care resource use.

BACKGROUND: Anger and aggression among adults with intellectual disability (ID) are associated with a range of adverse consequences for their well-being and that of their family or staff carers. The aims were to evaluate the effectiveness of an anger management intervention for adults with mild to moderate ID and to evaluate the costs of the intervention and its impact on health and social care resource use. This paper is concerned with the latter aim. METHODS: A cluster-randomised controlled trial was conducted involving day services for adults with ID in Scotland, England and Wales. Incremental costs of delivering the intervention and its impact on subsequent total health and social care package costs were calculated. Full data comparing costs between baseline and follow-up 10 months later were collected for 67 participants in the intervention arm and 62 participants in the control arm. Cost differences between the groups at follow-up, adjusted for baseline levels, were calculated using non-parametric bootstrapping controlling for clustering. RESULTS: The mean hourly excess cost of intervention over treatment as usual was £12.34. A mean adjusted cost difference of £22.46 per person per week in favour of the intervention group was found but this was not statistically significant. CONCLUSIONS: The baseline-adjusted cost difference at follow-up would result in a fairly immediate compensation for the excess costs of intervention, provided the difference is not a statistical artefact. Further research is needed to clarify the extent to which it might represent a real saving in service support costs.

Sexual understanding, sources of information and social networks; the reports of young people with intellectual disabilities and their non-disabled peers.

BACKGROUND: Sexual development plays a vital part in young people's emotional adjustment. METHOD: This study compared the sexual understanding of 30 adolescents with mild intellectual disabilities (ID) and 30 non-disabled adolescents, along with their reports of where they obtained sexual information, and the nature of their social networks and support. RESULTS: As expected, the non-disabled young people had superior levels of knowledge. However, an interaction was found between group and gender. The non-disabled young women had a better grasp of sexual matters than men, whereas the opposite was the case for those with ID. The non-disabled young people reported more formal and informal sources of sexual information and described larger social networks than those with ID. CONCLUSIONS: These findings highlight the need to tackle the barriers to sexual knowledge faced by young people with ID, and the need to take account of the broader social context of their lives when doing so. This includes the attitudes to the developing sexuality of young women with ID in particular.

Psychological therapies for people with intellectual disabilities: comments on a matrix of evidence for interventions in challenging behaviour.

BACKGROUND: Psychological therapies with a proven efficacy in the general population are being adapted for use with people who have intellectual disabilities in community settings. METHODS: A systematic review of peer-reviewed literature published between 1980 and 2010 was carried out, to identify the evidence base for effective psychological interventions in challenging behaviour. Relevant databases were searched using applied key terms. Evidence was graded, according to the quality of the research. A best-evidence Matrix was produced to improve guidance for service providers and practitioners in the range, volume and quality of psychological interventions. RESULTS: There is a limited amount of efficacy research that meets the most stringent standards of empirical evidence. CONCLUSIONS: It is important to broaden the evidence base and consider the context of psychological interventions, alongside the values underpinning care and treatment.

Interactional patterns between staff and clients with borderline to mild intellectual disabilities.

BACKGROUND: Client-centred models of care imply that clients should have a collaborative relationship with staff providing support. This study investigates whether dialogues between staff and clients in naturally occurring contexts reflect this collaborative ideal. METHODS: Nineteen staff members video recorded a social interaction with one of their clients. The topic of the interaction concerned an aspect of their support needs. The recordings were transcribed and analysed using the Initiative Response Analysis designed by Linell et al. RESULTS: Staff were more dominant than clients, albeit the level of asymmetry in the dialogues was relatively small. However, a different pattern of turns was used by staff and clients. Staff asked more direct questions and sometimes neglected meaningful client contributions. Clients, on the other hand, provided more extended turns in response to staff members' questions, thereby helping to maintain the dialogue. However, in a notable minority of communicative turns, the clients failed to link with the staff member's contribution. CONCLUSIONS: The interactional patterns found in this study suggest that staff and clients can face difficulties establishing collaborative dialogues on shared topics. Future research should take account of what staff and clients want to achieve in dialogues, along with the nature of their non-verbal communication.

Cognitive behavioural therapy from the perspective of clients with mild intellectual disabilities: a qualitative investigation of process issues.

BACKGROUND: Clinicians working with clients who have mild intellectual disabilities (IDs) have shown growing enthusiasm for using a cognitive behavioural approach, amid increasing evidence of good treatment outcomes for this client group. However, very little is known about the views and experiences of clients with IDs who have undergone cognitive behavioural therapy. This study aims to explore the perspective of these clients. METHODS: Fifteen participants with borderline to mild IDs and problems of anxiety, depression and anger were interviewed regarding their experience of cognitive behavioural therapy (CBT). Two semi-structured interviews were carried out in the first phase of therapy between session four and session nine. An interpretive phenomenological approach was taken to seek out themes from participants' own personal accounts. RESULTS: Participants valued the opportunity to talk about problems with their therapist and benefitted from therapeutic relationships characterised by warmth, empathy and validation. Participants identified areas of positive change; however, many thought that this may be short lived or not maintained beyond discharge. CONCLUSIONS: The supportive aspects of therapeutic relationships were particularly important to participants undergoing CBT. The clinical implications are considered.

Do video reviews of therapy sessions help people with mild intellectual disabilities describe their perceptions of cognitive behaviour therapy?

BACKGROUND: This study examined the potential of a retrospective video reviewing process [Burford Reviewing Process (BRP)] for enabling people with intellectual disabilities to describe their experiences of cognitive behaviour therapy (CBT). It is the first time that the BRP, described in this paper, has been used with people with intellectual disabilities and the aim was to assess the feasibility of the procedure and gain a picture of the information it might yield. METHODS: Using the BRP, 12 clients reviewed tapes of their fourth and ninth CBT sessions and six reviewed the fourth session only. All reviews were audio recorded for later verbatim transcriptions of clients' comments. Reviews and transcriptions were conducted by non-clinical researchers. Thematic analysis was applied to the transcripts by a researcher who was not CBT-trained. RESULTS: All clients were able to follow the instructions for the BRP. Three broadly based themes encapsulated their responses - how they felt about themselves, how they felt the therapist was helping and how CBT was helping. A fourth theme referred to comments on issues that were currently troubling clients, which were prompted by watching the video but did not refer to actual events on screen. CONCLUSIONS: The BRP seems a feasible approach with this client group and gave insights into their feelings and opinions on CBT. Clinical implications of the results and the potential for further developments are discussed.

Interpersonal sources of conflict in young people with and without mild to moderate intellectual disabilities at transition from adolescence to adulthood.

BACKGROUND: Interpersonal conflict is a source of stress and contributes to poor mental health in people with mild to moderate intellectual disabilities. Understanding the contexts in which conflict typically occurs can better equip services to help people with such difficulties. However, existing studies into the contexts of conflict have included participants with wide-ranging ages and may not reflect the experiences of young adults in particular. MATERIALS AND METHODS: Twenty-six young adults (16-20 years) with intellectual disabilities and 20 non-disabled young adults completed a semi-structured interview about a recent experience of interpersonal conflict. Participants were asked to describe their beliefs and feelings about the event and their subsequent response. RESULTS: Participants with intellectual disabilities were more likely to encounter conflict with strangers or peers outside their friendship group and to describe incidents of aggression than non-disabled participants. They were also more likely to characterize the other person globally as 'bad' and to perceive the other's actions as being personally directed at them. Young women with intellectual disabilities were less likely to describe responding aggressively to incidents. CONCLUSIONS: Findings suggest that young adults with intellectual disabilities are often the target of overt aggression from those outside their inner social sphere, while their non-disabled peers are more likely to experience conflict with people close to them. Young adults with intellectual disabilities may also be more likely to feel victimized by interpersonal conflict. Implications of these findings and limitations of the study are discussed.

Cognitive behavioural therapy: from face to face interaction to a broader contextual understanding of change.

Cognitive behavioural therapy (CBT) is increasingly used to address the emotional and interpersonal problems of people with ID. There is a limited but promising evidence base supporting this activity. However, these individuals face real and continuing challenges in their lives that have implications for their self and interpersonal perceptions. These adversities have implications for the adaptation of CBT. First, it may mean that characteristically negative perceptions may be more common and may be the result of a complex interaction with a truly aversive environment and should not simply be considered as cognitive distortions. Secondly, clients may have limited control over their everyday lives, with limited opportunity to negotiate change with their informal and formal sources of support. This review suggests that it is important to consider the interpersonal context of therapy both to ensure effective work within sessions and to enable real change in clients' everyday lives. The review draws upon Vygotsky's theory of the zone of proximal development and ecological models of change to consider the challenges of establishing collaborative relationships and the potential to use CBT within a broad psychosocial model. The aim is to offer a helpful framework for practitioners and to identify directions for future research.

Social goals and conflict strategies of individuals with mild to moderate intellectual disabilities who present problems of aggression.

BACKGROUND: A few recent studies have adopted a social cognitive perspective to explore how individuals with intellectual disabilities (IDs), who present problems of aggression, view their social world. The focus has mainly been on participants' perceptions of others' behaviour within conflict situations. The present exploratory study aims to compliment existing research by exploring social cognitive factors that may influence how individuals respond to conflict. METHODS: Study was carried out with 20 aggressive and 20 non-aggressive men and women who have a mild to moderate ID. The 'Social Goals and Strategies for Conflict' (SGASC) assessment was devised to explore whether group or gender differences could be found in participants' expected outcomes of aggressive strategies, their expected outcomes of submissive strategies and their emotional reaction to these outcomes. Participants' social goals within hypothetical situations of conflict were also explored. RESULTS: It was found that aggressive and non-aggressive participants have different social goals. There were no significant differences for expected outcomes of aggression or submissiveness. Nevertheless, a number of trends suggest that more aggressive participants expect negative outcomes for submissiveness compared with their non-aggressive peers. CONCLUSIONS: While the findings of this study are tentative, investigating the social outcomes that are valued by individuals with ID who present problems of aggression appears to be a promising area for further research, with possible implications for clinical assessment and treatment.

The psychometric properties of the Hospital Anxiety and Depressions Scale adapted for use with people with intellectual disabilities.

BACKGROUND: There is increasing recognition of depression in people with intellectual disabilities (ID). There is a need to develop well-standardised self-report measures for both clinical and research purposes. This paper presents some psychometric properties of the Hospital Anxiety and Depression Scale (HADS) adapted for use with people with ID. The anhedonic emphasis in the depression scale of the HADS may be particularly useful for people with ID who present with high rates of physical co-morbidity. METHOD: A total of 197 people with ID completed an adapted HADS; 32 participants also completed the Zung Depression Scale and 42 also completed the Glasgow Depression Scale. RESULTS: The obtained factor structure is similar to the original form of the scale used with people without ID. However, the underlying question wording of the HADS, where most depression items are phrased positively and most anxiety items are phrased negatively, makes clear interpretation of the factor structure difficult. The HADS has an adequate internal reliability and correlates well with other self-report measures of depression. CONCLUSIONS: The HADS may need further adaptation; however, the measurement of anhedonia is a useful addition to the self-report measures of depression available for people with ID.