Mindfulness as a Potential Moderator Between Child Behavior Problems and Maternal Well-Being.

Mindfulness-based programs can help lower psychological distress among parents of children with developmental disabilities. However, less is known about the functions of mindfulness in relation to parental outcomes. In a cross-sectional survey, mothers of children with developmental disabilities (N = 313) reported on their child's behavior problems, trait mindfulness, mindful parenting, and a range of outcomes (anxiety and depression symptoms, parenting stress, family satisfaction, and positive gain). Neither trait mindfulness or mindful parenting acted as moderators between child behavior problems and outcome variables, although both had main effect (compensatory) associations with parent outcomes. Benefits of mindfulness-based programs may be general rather than specifically in the context of high child behavior problems, given the lack of evidence for the moderating function of mindfulness.

How an Interest in Mindfulness Influences Linguistic Markers in Online Microblogging Discourse.

Objectives: This study aimed to investigate the linguistic markers of an interest in mindfulness. Specifically, it examined whether individuals who follow mindfulness experts on Twitter use different language in their tweets compared to a random sample of Twitter users. This is a first step which may complement commonly used self-report measures of mindfulness with quantifiable behavioural metrics. Method: A linguistic analysis examined the association between an interest in mindfulness and linguistic markers in 1.87 million Twitter entries across 19,732 users from two groups, (1) a mindfulness interest group (n = 10,347) comprising followers of five mindfulness experts and (2) a control group (n = 9385) of a random selection of Twitter users. Text analysis software (Linguistic Inquiry and Word Count) was used to analyse linguistic markers associated with the categories and subcategories of mindfulness, affective processes, social orientation, and "being" mode of mind. Results: Analyses revealed an association between an interest in mindfulness and lexical choice. Specifically, tweets from the mindfulness interest group contained a significantly higher frequency of markers associated with mindfulness, positive emotion, happiness, and social orientation, and a significantly lower frequency of markers associated with negative emotion, past focus, present focus, future focus, family orientation, and friend orientation. Conclusions: Results from this study suggest that an interest in mindfulness is associated with more frequent use of certain language markers on Twitter. The analysis opens possible pathways towards developing more naturalistic methods of understanding and assessing mindfulness which may complement self-reporting methods.

Mindfulness-based programmes and 'bigger than self' issues: protocol for a scoping review.

INTRODUCTION: Mindfulness-based programmes (MBPs) have an established, growing evidence base as interventions to optimise health, well-being and performance of individual participants. Emerging evidence suggests that MBPs also enhance prosociality, encouraging individuals to contribute to positive social change. This study focuses on the potential of MBPs to facilitate development of participants' inner resources that support prosocial shifts. The review seeks to detect shifts in MBP benefit from individual toward 'bigger than self', informing and empowering individual and collective responses to complex societal and global issues. The review aims to map current literature on MBPs and social change, into a descriptive overview with commentary on quality, trends, theoretical models and gaps, and on how training in MBPs potentially enables individual and collective responses to societal and global issues. Recommendations for future directions for researchers seeking to advance this evidence base, and practitioners developing innovative MBPs for this purpose will be provided. METHODS AND ANALYSIS: A scoping review of peer-reviewed literature will be undertaken and reported on according to the Joanna Briggs Institute (JBI) Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance. Systematic searches of four scientific databases will be undertaken to identify potentially eligible articles published from all time to current date. Data will be extracted using an extraction template and analysed descriptively using narrative synthesis. ETHICS AND DISSEMINATION: This scoping review involves no human participants, so ethics is not required. Findings will be shared through professional networks, conference presentations and journal publication.

Introducing the Mindfulness-Based Interventions: Teaching and Learning Companion (The TLC).

BACKGROUND: Reflective practice is a key skill which can enable the development of teaching competence among Mindfulness-Based Program (MBP) teachers. PURPOSE: In this article, the Mindfulness-Based Interventions: Teaching and Learning Companion (TLC) is introduced. This new tool is based upon the established teaching competence assessment tool, the Mindfulness-Based Interventions: Teaching Assessment Criteria (MBI:TAC). The MBI:TAC has enabled benchmarking of international standards of MBP teaching which helps ensure high fidelity to MBP curricula and contributes to the overall integrity of the field. This in turn, underpins the potential of MBPs to be effective interventions for the enhancement of participants' mental health and wellbeing. CONCLUSIONS: The TLC aims to facilitate MBP teachers' development by enabling active reflection focused on the key features of MBP teaching skills.

Using the Mindfulness-Based Interventions: Teaching Assessment Criteria (MBI:TAC) in Supervision.

The Mindfulness-Based Interventions: Teaching Assessment Criteria (MBI:TAC) is a useful framework for supporting teacher development in the context of mindfulness-based supervision (MBS). It offers a framework that enhances clarity, develops reflexive practice, gives a structure for feedback, and supports learning. MBS is a key component of Mindfulness-Based Program (MBP) teacher training and ongoing good practice. Integrating the MBI:TAC within the MBS process adds value in a number of ways including: offering a shared language around MBP teaching skills and processes; framing the core pedagogical features of MBP teaching; enabling assessment of developmental stage; and empowering supervisees to be proactive in their own development. The paper lays out principles for integrating the MBI:TAC framework into MBS. The supervisor needs awareness of the ways in which the tool can add value, and the ways it can inadvertently interrupt learning. The tool enables skills clarification, but the learning process needs to remain open to spontaneous experiential discovery; it can enable structured feedback but space is also needed for open reflective feedback; and it can enable conceptual engagement with the teaching process but space is needed for the supervisee to experientially sense the teaching process. The tool needs to be introduced in a carefully staged way to create optimal conditions for learning at the various stages of the MBP teacher-training journey. Practical guidance is presented to consolidate and develop current practice. The principles and processes discussed can be generalized to other forms of reflective dialogue such as mentoring, tutoring and peer reflection groups.

Can We Agree What Skilled Mindfulness-Based Teaching Looks Like? Lessons From Studying the MBI:TAC.

BACKGROUND: The Mindfulness-Based Interventions: Teaching Assessment Criteria (MBI:TAC) is a widely used tool for assessing fidelity in mindfulness-based program (MBP) research and training. It also supports MBP teacher reflective and skill development. MBI:TAC assessors review MBP teaching and rate the teaching on 6 domains. The MBI:TAC yields individual domain and overall scores, using 6 levels of competence. Although the MBI:TAC is widely used in MBP research and training, research is at an early stage. OBJECTIVE: We developed and tested a method of training MBI:TAC assessors to use the tool reliably and examined interrater reliability of the tool. METHODS: A total of 31 international senior MBP teachers were recruited to join an online training to build their skills in using the MBI:TAC. The training systematically and iteratively built familiarity and skills in assessing the 6 MBI:TAC domains. Qualitative and quantitative data on trainee's experience of the training were gathered. Interrater reliability in using the tool was tested each week of the training. At the end of the training, interrater reliability was tested by asking trainees to individually assess videos that they had not previously seen. Their ratings were compared to benchmark assessments, which had been established via consensus agreement between 4 expert users of the MBI:TAC. RESULTS: The training was well received and appreciated, with some challenges experienced in applying the assessment methodology. Participants' ratings became progressively more in line with one another and the benchmark ratings during the training. At the end, interrater reliability was high (ranging from 0.67 to 1.0). CONCLUSION: It is possible for senior MBP trainers, coming from different regions in the world, to align toward common understandings of the elements of MBP teaching competence and program integrity. An assessor training methodology was tested, and the learning from this project has led to refinements for future delivery.

Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children with autism.

BACKGROUND: It is well documented that mothers of children with intellectual disabilities or autism experience elevated stress, with mental health compromised. However, comparatively little is known about mothers of children with rare genetic syndromes. This study describes mental health and well-being in mothers of children with 13 rare genetic syndromes and contrasts the results with mothers of children with autism. METHODS: Mothers of children with 13 genetic syndromes (n = 646; Angelman, Cornelia de Lange, Down, Fragile-X, Phelan McDermid, Prader-Willi, Rett, Rubenstein Taybi, Smith Magenis, Soto, Tuberous Sclerosis Complex, 1p36 deletion and 8p23 deletion syndromes) and mothers of children with autism (n = 66) completed measures of positive mental health, stress and depression. Using Bayesian methodology, the influence of syndrome, child ability, and mother and child age were explored in relation to each outcome. Bayesian Model Averaging was used to explore maternal depression, positive gain and positive affect, and maternal stress was tested using an ordinal probit regression model. RESULTS: Different child and mother factors influenced different aspects of mental well-being, and critically, the importance of these factors differed between syndromes. Maternal depression was influenced by child ability in only four syndromes, with the other syndromes reporting elevated or lower levels of maternal depression regardless of child factors. Maternal stress showed a more complex pattern of interaction with child ability, and for some groups, child age. Within positive mental health, mother and child age were more influential than child ability. Some syndromes reported comparable levels of depression (SMS, 1p36, CdLS) and stress (SMS, AS) to mothers of children with autism. CONCLUSIONS: Bayesian methodology was used in a novel manner to explore factors that explain variability in mental health amongst mothers of children with rare genetic disorders. Significant proportions of mothers of children with specific genetic syndromes experienced levels of depression and stress similar to those reported by mothers of children with autism. Identifying such high-risk mothers allows for potential early intervention and the implementation of support structures.

Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study.

It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.

Associations Between Resilience and the Well-Being of Mothers of Children with Autism Spectrum Disorder and Other Developmental Disabilities.

There is variability in the extent to which mothers are affected by the behavior problems of their children with developmental disabilities (DD). We explore whether maternal resilience functions as a protective or compensatory factor. In Studies 1 and 2, using moderated multiple regression models, we found evidence that maternal resilience functioned as a compensatory factor-having a significant independent main effect relationship with well-being outcomes in mothers of children with DD and autism spectrum disorder. However, there was no longitudinal association between resilience and maternal well-being outcomes. There was little evidence of the role of resilience as a protective factor between child behavior problems and maternal well-being in both studies.

'Finding the person you really are on the inside': Compassion focused therapy for adults with intellectual disabilities.

This study utilized a mixed methods approach to examine the feasibility and acceptability of group compassion focused therapy for adults with intellectual disabilities (CFT-ID). Six participants with mild ID participated in six sessions of group CFT, specifically adapted for adults with ID. Session-by-session feasibility and acceptability measures suggested that participants understood the group content and process and experienced group sessions and experiential practices as helpful and enjoyable. Thematic analysis of focus groups identified three themes relating to (1) direct experiences of the group, (2) initial difficulties in being self-compassionate and (3) positive emotional changes. Pre- and post-group outcome measures indicated significant reductions in both self-criticism and unfavourable social comparisons. Results suggest that CFT can be adapted for individuals with ID and provide preliminary evidence that people with ID and psychological difficulties may experience a number of benefits from this group intervention.

Challenging behaviours in adults with an intellectual disability: A total population study and exploration of risk indices.

OBJECTIVES: Considerable variation has been reported in the prevalence and correlates of challenging behaviour (CB) in adults with intellectual disabilities (ID). To provide a robust estimate of prevalence, we identified the entire administrative population of adults with ID in a defined geographical area and used a behaviour assessment tool with good psychometric properties. METHODS: Data from 265 adults who were known to services were collected using a demographic survey tool and the Behavior Problems Inventory - Short Form. The prevalence of self-injurious, aggressive/destructive, stereotyped, and overall CB was evaluated. We explored the potential of developing cumulative risk indices (CRI) to inform longitudinal research and clinical practice. RESULTS: The prevalence of overall CB was 18.1% (95% CI: 13.94-23.19%). The prevalence of self-injurious behaviour was 7.5% (95% CI: 4.94-11.37%), aggressive-destructive behaviour 8.3% (95% CI: 5.54-12.25%), and stereotyped behaviour 10.9% (95% CI: 7.73-15.27%). Communication problems and severity of ID were consistently associated with higher risk of CBs. CRIs were significantly associated with CBs, and the five methods of CRI development produced similar results. CONCLUSIONS: Findings suggest a multi-element response to CB is likely to be required that includes interventions for communication and daytime activity. Exploratory analyses of CRIs suggested these show promise as simple ways to capture cumulative risk in this population. Subject to longitudinal replication, such a tool may be especially useful in clinical practice to identify adults who are priority for interventions and predict future demand on services. PRACTITIONER POINTS: The prevalence of challenging behaviour (CB) was 18.1% in this total population study. Stereotypy was the most frequent type of CB. Communication difficulties and severe-profound intellectual disabilities were most systematically related to the presence of CB. Establishing the effect of multiple risk factors is likely to identify people who are priority for interventions. Addressing multiple, rather than singular risks, is likely to be more efficacious. We tested five different methods of putting together a multiple risk index. All methods provided a reasonable association with CB. The most user-friendly method was the additive cumulative risk index (CRI). Limitations This is a cross-sectional design which enabled factors currently associated with CB to be identified for the whole cohort, but these variables may not be those conferring risk for the development or maintenance of CB over time. Future longitudinal research is required to replicate these CRI analyses before concluding about the CRI method with the highest predictive validity.

Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities.

Objectives: Behavioral and emotional problems exhibited by children with intellectual and developmental disabilities (IDD) have been identified as significant stressors for family members in both cross-sectional and longitudinal research. However, there is variability in the extent to which family members are affected by behavioral and emotional problems. In the present study, we explored whether perceived social support, positive perceptions, or coping style explain some of this variability and specifically whether these three variables function as protective factors. Methods: One hundred and thirty-eight mothers of children aged between four and 18 years old with IDD participated in a cross-sectional survey. Results: Using moderated multiple regression models, we found consistent evidence that perceived social support functioned as a protective factor - affecting the relationship between child behavioral and emotional problems and maternal depression, life satisfaction, and positive affect. There was no evidence that coping and positive perceptions acted as a protective factors. Conclusion: Building social support through parental interventions, especially in families of children with behavioral and emotional problems, may result in improved well-being for mothers of children with IDD.

Can a mindfulness-informed intervention reduce aggressive behaviour in people with intellectual disabilities? Protocol for a feasibility study.

BACKGROUND: Approximately 10-20 % of adults with intellectual disabilities engage in challenging behaviours such as aggression, destructiveness, and self-injury, which are often accompanied by feelings of anger. The inability to manage anger can reduce quality of life. For example, aggression is a strong predictor of out-of-area placements and is a risk variable for abuse. Recent research suggests that mindfulness-based therapies (specifically, Singh's Soles of the Feet meditation) can help people with intellectual disabilities manage angry emotions, with resultant reductions in challenging behaviour. However, previous research has been single-case design studies, and no group studies have been published with people with intellectual disabilities and aggressive behaviour. METHODS/DESIGN: For this feasibility study, a UK protocol will be developed for use by health professionals within National Health Service (NHS) Intellectual Disability (ID) teams, based upon Singh's Soles of the Feet manual. Twenty adults with intellectual disabilities and identified problems with anger control will be recruited and six sessions will be delivered by a trained ID clinician. The study will monitor participant's aggressive behaviour, health-related quality of life, anxiety, depression, and use of support services (medication, hospital appointments etc.). These will be measured at three time points: (1) Baseline (within 2 weeks prior to the first session of the intervention), (2) 2 months post-baseline, and (3) 6 months post-baseline. Qualitative interviews will be conducted with participants, their carers, and the therapists who delivered the intervention. In order to help design an economic evaluation alongside a future full trial, we will cost the intervention and test the acceptability and validity of health economics measures to record resource use and health-related quality of life outcomes. DISCUSSION: The data from this study will inform the feasibility of the project protocol and intervention, which will help develop future research and to determine whether a larger, randomised controlled trial with concurrent economic evaluation is feasible. TRIAL REGISTRATION: UKCERN: 16743.

Fathers' and mothers' ratings of behavioral and emotional problems in siblings of children with autism spectrum disorder.

Debate is ongoing about whether typically developing siblings of children with autism spectrum disorder (ASD) are at greater risk of behavioral or emotional problems than siblings of children without ASD. Most data on behavior is provided by mothers, and we do not know whether fathers' reports differ. The strengths and difficulties questionnaire (Goodman in J Child Psychol Psychiatry 38(5):581-586, 1997) was completed by 168 mothers and 130 fathers. Parents were more likely to rate siblings as having 'abnormal' behavior when compared to a normative population. We found moderate correlations between mother-father ratings. More research may be needed to understand any clinical benefits of gathering data about sibling adjustment from more than one parent in the family. Implications for clinical practice and future research are discussed.

Social behavior and characteristics of autism spectrum disorder in Angelman, Cornelia de Lange, and Cri du Chat syndromes.

We evaluated autism spectrum disorder (ASD) characteristics and social behavior in Angelman (AS; n  =  19; mean age  = 10.35 years), Cornelia de Lange (CdLS; n  =  15; mean age  = 12.40 years), and Cri du Chat (CdCS, also known as 5 p-syndrome; n  =  19; mean age  =  8.80 years) syndromes. The proportion of individuals meeting the ASD cutoff on the Social Communication Questionnaire was significantly higher in the AS and CdLS groups than in the CdCS group (p < .01). The groups demonstrated divergent social behavior profiles during social conditions in which adult availability, adult familiarity, and social demand were manipulated. Social enjoyment was significantly heightened in AS, whereas social approaches were heightened in individuals with CdCS. Social motivation, social communication, and enjoyment were significantly lower in CdLS. The findings highlight the importance of detailed observation when evaluating ASD and social behavior in genetic syndromes.

"We are all there silently coping." The hidden experiences of parents of adults with Asperger syndrome.

BACKGROUND: The experiences of older parents of adults with Asperger syndrome have not been explored in the research literature. METHOD: Four families who had middle-aged offspring with Asperger syndrome were interviewed (3 mothers and 1 couple), and the interviews were analysed using interpretative phenomenological analysis (IPA). RESULTS: Six themes emerged from the analysis: (a) providers of "hidden" support, (b) role of advocate, (c) social isolation, (d) intrafamilial relationships, (e) support for parents, and (f) future concerns. CONCLUSIONS: The findings of this study offer insight into the experience of parents of adult sons with Asperger syndrome. Implications for future support interventions and research are suggested.

Outcomes of a behavioral education model for children with autism in a mainstream school setting.

The authors report 1-year outcomes for 11 children (3-7 years) with autism who attended an "Applied Behavior Analysis (ABA) classroom" educational intervention in a mainstream school setting. The children learned new skills by the end of 1 year and learned additional skills during a 2nd year. Group analysis of standardized test outcomes (IQ and adaptive behavior) showed moderate to large effect size changes over 1 year, with further changes during a 2nd year. Standardized test outcomes for nine children after 2 years were also analyzed against a comparison group (n = 18) of children with autism receiving "education as usual." These controlled comparisons were associated with statistically significant large effects in favor of the ABA group for adaptive skills. Exploratory analysis also showed that increases in language and learning skills in the ABA class group were generally associated with positive changes in standardized test scores. A comprehensive behavioral intervention model can be successfully implemented in a mainstream school setting.

'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood.

The experiences of individuals in middle adulthood with Asperger syndrome have been the subject of little previous research, especially in terms of their experience of support services. In the present research, 11 adults with Asperger syndrome were interviewed. Interpretative phenomenological analysis (IPA) was used to interpret the interviews. Four themes emerged from the analysis: living with Asperger syndrome; employment issues; experiences with mainstream support; and future steps towards supporting adults with Asperger syndrome. The findings highlighted the anxiety, depression, and communication difficulties that people with Asperger syndrome may experience. Much of the available support is perceived as unsuitable for individuals with Asperger syndrome. All participants wanted to remain as independent as possible, and believed an individualized approach to support would be greatly beneficial. Recommendations are made for future practice to help support adults with Asperger syndrome.

"You have to sit and explain it all, and explain yourself." Mothers' experiences of support services for their offspring with a rare genetic intellectual disability syndrome.

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring's syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring's syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring's syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.