Health Related Quality of Life for Young People receiving Dialectical Behaviour Therapy (DBT):A routine outcome-monitoring pilot

PURPOSE: Adults presenting with borderline personality disorder (BPD) score poorly on measures of health related quality of life (HRQoL). Little is known about HRQoL in adolescents with BPD type presentations and how treatment impacts quality of life. Our primary aim was to use routinely collected quality-of-life outcome measures pre and post-treatment in dialectical behaviour therapy (DBT) for adolescents to address this gap. Secondary aims were to benchmark these data against EuroQol 5 dimensions (EQ-5D™) outcomes for clients treated in clinical trials and to assess the potential of the EQ-5D™ as a benchmarking tool. METHOD: Four adolescent DBT teams, routinely collecting outcome data using a pseudonymised secure web-based system, supplied data from consecutive discharges. RESULTS: Young people in the DBT programmes (n = 43) had severely impaired HRQoL scores that were lower at programme admission than those reported in published studies using the EQ-5D™ in adults with a BPD diagnosis and in one study of adolescents treated for depression. 40 % of adolescents treated achieved Reliable Clinical Change. HRQoL improved between admission and discharge with a large effect size. These results were not statistically significant when clustering in programme outcomes was accounted for. CONCLUSION: Young people treated in NHS DBT programmes for BPD type presentations had poorer HRQoL than adults with a BPD diagnosis and adolescents with depression treated in published clinical trials. The EQ-5D™ detected reliable change in this group of adolescents. Programme outcome clustering suggests that both the measure and the web-based monitoring system provide a mechanism for benchmarking clinical programmes

Prospective associations between family-based social capital, wellbeing, and emotional and behavioral problems amongst people with mild intellectual disabilities:A two-wave study

IntroductionFamily members are often the main provider of informal support to people with mild intellectual disabilities. In the current study, we explored whether their family-based social capital is prospectively associated with their wellbeing and emotional and behavioral problems.MethodsSixty-nine participants with mild intellectual disabilities and key (proxy reporting) staff members participated in two waves of data collection (T1, T2). Data were collected about family-based social capital (FNM-ID), subjective wellbeing (PWI-ID), and emotional and behavioral problems (ABCL, BPI-01).ResultsPeople who reported less support provision to family members and more reciprocal family support relationships at T1 experienced higher levels of internalizing behavior problems at T2, after accounting for T1 levels of internalizing behavior problems. No other associations were found between earlier family-based social capital dimensions and psychological outcomes at T2.ConclusionOur study provides initial insights regarding the prospective associations between the family-based social capital of people with mild intellectual disabilities and their wellbeing and emotional and behavioral problems. Future studies should include larger samples to investigate if our preliminary results are replicated

Construct validity of the Lifespan Sibling Relationship Scale measuring adult sibling relationship quality where one sibling has intellectual or developmental disabilities

The Lifespan Sibling Relationship Scale (LSRS) has been validated in samples where neither sibling has intellectual or developmental disabilities. We sought to examine the construct validity of the LSRS with a sample of adult siblings of people with intellectual or developmental disabilities. Adult siblings of people with intellectual or developmental disabilities (N = 646) completed Adult LSRS items measuring Affect, Behavior, and Cognitions. Confirmatory Factor Analysis (CFA) and Exploratory Factor Analysis (EFA) were employed to examine the construct validity of the LSRS in this sample. The initial CFA fit for a three-factor model was inadequate (CFI = 0.86, TLI = 0.84, RMSEA = 0.10, (Formula presented.) = 1752.97, df = 249). Further analyses using EFA suggested alternative two-factor and three-factor models. CFA models based on these potential factor solutions also had inadequate fit. These findings indicate that the LSRS may not be an appropriate measure of sibling relationships where one sibling has intellectual or developmental disabilities. Future research may need to utilize sibling relationship measures developed specifically for siblings where one has intellectual or developmental disabilities

Sibling Relationship and Behavioral Adjustment in Families of Disabled Children: Cross-Lagged Associations

Abstract Cross-lagged panel designs were used to examine longitudinal and potential (bi)directional relationships between primary caregiver reported sibling relationship quality and the behaviors of children with intellectual disability (n = 297) and their closest in age siblings. The behavioral and emotional problems of the child with intellectual disability positively predicted sibling conflict over time. When accounting for control variables, this relationship was no longer present. Sibling warmth positively predicted the prosocial behaviors of the child with intellectual disability over time. When accounting for control variables, both sibling warmth and sibling conflict positively predicted the prosocial behaviors of the child with intellectual disability over time. Future research directions and clinical implications are discussed.</jats:p

Family based social capital of adults with mild intellectual disabilities supported in 24-hour residential settings compared to outreach settings

To enhance social inclusion of people with (mild) intellectual disabilities, policy tends to focus on increasing their informal supportive networks. Family members, mostly parents, are often the main providers of informal support to people with mild intellectual disabilities. Previous research has shown the utility of social capital as a theoretical framework to examine support in the family relationships of people with mild intellectual disabilities, and has shown that several features of the family-based social capital of people with mild intellectual disabilities are dependent on support and living arrangements. However, existing research on support and living arrangements does not take the key features of family-based social capital (i.e., bonding and bridging social capital, reciprocity) into account. Therefore, the aim of the current study is to examine the family-based social capital of people with mild intellectual disabilities supported in 24-h residential settings (n = 29) versus outreach support settings (n = 45). All participants were individually interviewed about their family support relationships using the Family Network Method-Intellectual Disability (FNM-ID). Data were analyzed quantitatively using social network analyses and group comparisons. No significant differences between the two subgroups were found in the social network measures: the two subgroups did not differ in their experience of bonding and bridging social capital, nor in terms of the experienced reciprocity in their family relationships. However, a few differences in the composition of the family network were found. While people with mild intellectual disabilities in outreach support settings were more likely to include children in their significant family network and to provide support to parents, participants in 24-h care settings were more likely to report extended family as significant family network members

The Kids and Teens at School (KiTeS) framework: An inclusive bioecological systems approach to understanding school absenteeism and school attendance problems

Pathways through Adolescenc

“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

Development and initial psychometric properties of the Warwick–Edinburgh Mental Wellbeing Scale‐Intellectual Disability version

Background The Warwick–Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al., 2007) is yet to be validated in the intellectual disability (ID) population. The aim of this study was to report the development process and assess the psychometric properties of a newly adapted version of the WEMWBS and the Short WEMWBS for individuals with mild to moderate IDs (WEMWBS-ID/SWEMWBS-ID). Method The WEMWBS item wordings and response options were revised by clinicians and researchers expert in the field of ID, and a visual aid was added to the scale. The adapted version was reviewed by 10 individuals with IDs. The measure was administered by researchers online using screenshare, to individuals aged 16+ years with mild to moderate IDs. Data from three UK samples were collated to evaluate the WEMWBS-ID (n = 96). A subsample (n = 22) completed the measure again 1 to 2 weeks later to assess test–retest reliability, and 95 participants additionally completed an adapted version of the adapted Rosenberg Self-Esteem Scale to examine convergent validity. Additional data from a Canadian sample (n = 27) were used to evaluate the SWEMWBS-ID (n = 123). Results The WEMWBS-ID demonstrated good internal consistency (ω = 0.77–0.87), excellent test–retest reliability [intraclass correlation coefficient (ICC) = .88] and good convergent validity with the self-esteem scale (r = .48–.60) across samples. A confirmatory factor analysis for a single factor model demonstrated an adequate fit. The SWEMWBS-ID showed poor to good internal consistency (ω = 0.36–0.74), moderate test–retest reliability (ICC = .67) and good convergent validity (r = .48–.60) across samples, and a confirmatory factor analysis indicated good model fit for a single factor structure. Conclusions The WEMWBS-ID and short version demonstrated promising psychometric properties, when administered virtually by a researcher. Further exploration of the scales with larger, representative samples is warranted