Accessibility and feasibility of experience sampling methods for mental health research with people with intellectual disability: Scoping of research and stakeholder views.

BACKGROUND: Experience sampling may be useful for mental health research with people with intellectual disability, and evidence of the potential benefits is starting to emerge. This multiple-method study identified potential avenues for tailoring this method to the needs of people with intellectual disability. METHOD: A scoping review was conducted. Five databases were searched for experience sampling studies involving people with intellectual disability. In addition, seven adults with an intellectual disability tested experience sampling apps with standardised questions about mental health and were interviewed about their experiences in semi-structured interviews. RESULTS: Seven studies were included in the scoping review. Two studies investigated acceptability and feasibility. In the interviews, participants reported on the acceptability, availability, and appropriateness of experience sampling applications. CONCLUSIONS: There are still important gaps in knowledge about acceptability, availability, and appropriateness of experience sampling for this population. Researchers are recommended to tailor experience sampling applications to the needs and interests of individual users.

Exploring the meaning of unresolved loss and trauma in more than 1,000 Adult Attachment Interviews.

Unresolved states of mind regarding experiences of loss/abuse (U/d) are identified through lapses in the monitoring of reasoning, discourse, and behavior surrounding loss/abuse in response to the Adult Attachment Interview. Although the coding system for U/d has been widely used for decades, the individual indicators of unresolved loss/abuse have not been validated independently of the development sample. This study examined the psychometric validity of U/d, using individual participant data from 1,009 parent-child dyads across 13 studies. A latent class analysis showed that subsets of commonly occurring U/d indicators could differentiate interviewees with or without unresolved loss/abuse. Predictive models suggested a psychometric model of U/d consisting of a combination of these common indicators, with disbelief and psychologically confused statements regarding loss being especially important indicators of U/d. This model weakly predicted infant disorganized attachment. Multilevel regression analysis showed no significant association between ratings of unresolved other trauma and infant disorganized attachment, over and above ratings of unresolved loss/abuse. Altogether, these findings suggest that the coding system of U/d may have been overfitted to the initial development sample. Directions for further articulation and optimization of U/d are provided.

Pushing the boundaries of digital social contact: Experiences of people with disabilities and their social networks during the COVID-19 pandemic.

During the COVID-19 pandemic, many people with intellectual disabilities living in care facilities could not receive visitors. Health authorities suggested the use of digital social contact as an alternative for in-person visits. We examined how people with intellectual disabilities living in care facilities experienced the use of digital social contact with their informal social network throughout 2020. Residents, their relatives, volunteer visitors, direct support staff, and care facility managers (N = 283) completed an online questionnaire, of whom 35 participated in an interview. Video calling and in-person visits were among the most common forms of staying in touch. Experiences with digital social contact depended on residents' abilities and support needs, and on preconditions, such as staff availability. The first phases of the pandemic led to experiences of possibilities and benefits of using digital social contact as complementary to in-person contact for people with different levels of intellectual disability, also after the pandemic.

Trauma and loss in the Adult Attachment Interview: Situating the unresolved state of mind classification in disciplinary and social context.

This article examines how 'trauma' has been conceptualised in the unresolved state of mind classification in the Adult Attachment Interview, introduced by Main and Hesse in 1990. The unresolved state of mind construct has been influential for three decades of research in developmental psychology. However, not much is known about how this measure of unresolved trauma was developed, and how it relates to other conceptualisations of trauma. We draw on previously unavailable manuscripts from Main and Hesse's personal archive, including various editions of unpublished coding manuals, and on Main-Bowlby correspondence from the John Bowlby Archive at the Wellcome Trust in London. This article traces the emergence of the unresolved state of mind classification, and examines the assumptions about trauma embedded in the construct. These assumptions are situated both in the immediate context of the work of Main and Hesse and in terms of wider discourses about trauma in the period. Our analysis considers how a particular form of trauma discourse entered into attachment research, and in doing so partly lost contact with wider disciplinary study of trauma.

Psychophysiological responses underlying unresolved loss and trauma in the Adult Attachment Interview.

Unresolved loss/trauma in the context of the Adult Attachment Interview (AAI) has been theorised to result from dissociative processing of fear-related memories and ideas. To examine the plausibility of this model, this study tested hypothesised associations between unresolved loss/trauma and indicators of autonomic nervous system (ANS) reactivity. First-time pregnant women (N = 235) participated in the AAI while heart rate (interbeat interval; IBI) and indicators of parasympathetic reactivity (respiratory sinus arrhythmia; RSA) and sympathetic reactivity (pre-ejection period; PEP, skin conductance level; SCL) were recorded. Using multilevel modelling, ANS reactivity was examined in relation to topic (loss/trauma versus other questions); discussion of actual loss/trauma; classification of unresolved/disorganised; and unresolved responses during the interview. Responses to loss/trauma questions and discussion of loss were associated with respectively larger and smaller IBIs. There was no moderation by unresolved/disorganised status. Unresolved responses about loss were associated with smaller IBIs. Participants classified as unresolved/disorganised showed decreasing PEP and blunted SCL throughout the whole interview. The findings suggest that unresolved speech about loss co-occurs with physiological arousal, although the inconclusive findings regarding parasympathetic and sympathetic nervous system responses fail to clearly support the role of fear.

People with intellectual disabilities living in care facilities engaging in virtual social contact: A systematic review of the feasibility and effects on well-being.

BACKGROUND: During the initial phase of the COVID-19 pandemic, many people with disabilities living in home care facilities could not receive visitors. The use of virtual social contact has been recommended by health authorities. This systematic review examined the scientific evidence of the use and feasibility of information and communication technology (ICT) for social contact by people with intellectual disabilities living in care facilities, and potential effects on well-being. METHODS: Five databases were searched using traditional systematic screening and machine-learning supported screening. Findings are presented in a narrative synthesis using thematic analysis. RESULTS: Nine studies were included. We described three themes: means of ICT used for social contact; effects on well-being; and benefits, barriers, and preconditions. CONCLUSIONS: Engaging in virtual social contact may be feasible for people with severe to mild intellectual disabilities, but there is little concrete evidence that this can be used as an alternative for in-person contact.

Six attachment discourses: convergence, divergence and relay.

Attachment concepts are used in diverging ways, which has caused confusion in communication among researchers, among practitioners, and between researchers and practitioners, and hinders their potential for collaboration. In this essay we explore how attachment concepts may vary in meaning across six different domains: popular discourses, developmental science, social psychological science, psychiatric diagnosis, psychotherapy, and child welfare practice. We attempt to typify these forms of attachment discourse by highlighting points of convergence, divergence, and relay between the different domains. Our general conclusions are that diversity in the use of attachment concepts across different domains of application has been largely unrecognised, and that recognition of these differences would reduce confusion, help identify sites where infrastructure needs to be developed to support coordination, and strengthen opportunities for collaboration to mutual benefit. We suggest that academic attachment discourse would benefit from clarification of core terminology, including: "attachment", "internal working model", "trauma", and "dysregulation".

Navigating the outcome maze: a scoping review of outcomes and instruments in clinical trials in genetic neurodevelopmental disorders and intellectual disability.

Background: Individuals with genetic neurodevelopmental disorders (GNDs) or intellectual disability (ID) are often affected by complex neuropsychiatric comorbidities. Targeted treatments are increasingly available, but due to the heterogeneity of these patient populations, choosing a key outcome and corresponding outcome measurement instrument remains challenging. Objectives: The aim of this scoping review was to describe the research on outcomes and instruments used in clinical trials in GNDs and ID. Eligibility criteria: Clinical trials in individuals with GNDs and ID for any intervention over the past 10 years were included in the review. Sources of evidence: MEDLINE, PsycINFO, and Cochrane CENTRAL were searched. Titles and abstracts were independently screened for eligibility with a subsample of 10% double-screening for interrater reliability. Data from full texts were independently reviewed. Discrepancies were discussed until consensus was reached. Charting methods: Information was recorded on patient populations, interventions, designs, outcomes, measurement instruments, and type of reporter when applicable. Qualitative and descriptive analyses were performed. Results: We included 312 studies reporting 91 different outcomes, with cognitive function most frequently measured (28%). Various outcome measurement instruments (n = 457) were used, with 288 in only a single clinical trial. There were 18 genetic condition-specific instruments and 16 measures were designed ad-hoc for one particular trial. Types of report included proxy-report (39%), self-report (22%), clinician-report (16%), observer-report (6%), self-assisted report (1%), or unknown (16%). Conclusion: This scoping review of current practice reveals a myriad of outcomes and outcome measurement instruments for clinical trials in GNDs and ID. This complicates generalization, evidence synthesis, and evaluation. It underlines the need for consensus on suitability, validity, and relevancy of instruments, ultimately resulting in a core outcome set. A series of steps is proposed to move from the myriad of measures to a more unified approach.

Navigating the maze of outcome measures in rare disorders Treatments for genetic neurodevelopmental disorders and intellectual disability are increasingly available. However, it is hard to find appropriate instruments to measure whether these treatments are working. This hampers research and means some patients might not get the treatment they need. This scoping review provides an overview of investigated outcomes in this group, and with which instruments these are measured. It reveals that many different and overlapping outcomes are measured, complicating gathering, combining, and comparing of evidence. This scoping review underlines the need for harmonization and consensus on suitability, validity, and relevancy. Steps are proposed to move from the maze of outcome measures to a unified approach. Also, we provided recommendations for researchers to measure what matters to affected individuals and patient-centered care.

A longitudinal study on the effects of psychological stress on proteinuria in childhood steroid-sensitive nephrotic syndrome.

OBJECTIVE: Steroid-sensitive nephrotic syndrome (SSNS) in children is often complicated by one or more relapses, as manifested by the appearance of proteinuria. Besides health-related triggers, psychological stress might be related to relapse. This longitudinal study examined the link between perceived stress, emotional valence (feeling happy vs. unhappy) and daily reported proteinuria, and investigated the temporal relation between stressful events and proteinuria. METHOD: Sixteen children (4-13 years) diagnosed with SSNS were included. Patients kept an online diary for an average of 124 days, wherein they reported proteinuria (n = 1985 urine samples), perceived stress, emotional valence, medication use and health complaints. Stressful days were determined at the start of the study. Using multilevel analysis, the following associations were tested: (1) the relation between perceived stress, emotional valence and proteinuria, and (2) the temporal relation between stressful days and proteinuria. RESULTS: Appearance of proteinuria was reported in 410/1985 urine samples. Perceived stress and not emotional valence significantly predicted proteinuria (95% CI [0.11, 0.27]), even five days later. There was a significant temporal association between stressful days and proteinuria (95% CI [0.22, 1.14]). The effect sizes of these associations were small, f = 0.04 and f = 0.12, respectively. CONCLUSIONS: Our findings suggest that psychological stress may trigger proteinuria in children with SSNS. Future research in larger samples is needed to support our findings.

Toward an architecture of attachment disorganization: John Bowlby's published and unpublished reflections.

This article examines the construct of disorganized attachment originally proposed by Main and Solomon, developing some new conjectures based on inspiration from a largely unknown source: John Bowlby's unpublished texts, housed at the Wellcome Trust Library Archive in London (with permission from the Bowlby family). We explore Bowlby's discussions of disorganized attachment, which he understood from the perspective of ethological theories of conflict behavior. Bowlby's reflections regarding differences among the behaviors used to code disorganized attachment will be used to explore distinctions that may underlie the structure of the current coding system. The article closes with an emphasis on the importance Bowlby placed on Popper's distinction between the context of discovery and the context of justification in developmental science.