Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review

Flynn, Samantha; Vereenooghe, Leen; Hastings, Richard P.; Adams, Dawn; Cooper, Sally‐Ann; Gore, Nick J.; Hatton, Chris; Hood, Kerenza; Jahoda, Andrew; Langdon, Peter E.; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane

doi:10.1016/j.cpr.2017.08.006

Cited by 76 publications

(57 citation statements)

References 60 publications

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“…Anxiety should be routinely assessed during clinical assessments, including assessment of change in behaviour from a person's baseline levels. The development of valid assessments for anxiety for autistic individuals with ID is also an important area for future research (Flynn et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Tarver

Pearson

Edwards

et al. 2020

Autism

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Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

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Section: Discussionmentioning

confidence: 99%

Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Tarver

Pearson

Edwards

et al. 2020

Autism

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“…This is due in part to the challenges of conducting trials in settings where there is a high prevalence of impaired capacity, and which may be in settings where research is rarely conducted [13,19,27,28]. This may be further compounded by the challenges raised by a lack of validated outcome measures for use in trials involving adults lacking capacity (for example, there are few mental health measures for people with severe and profound intellectual disabilities [58]) and the feasibility of using existing outcome measurement tools [19]. Cognitive impairment may mean that collecting self-reported outcomes, such as quality of life measures such as the fivelevel EuroQol five dimensions questionnaire, is challenging in some groups such as care home residents [59].…”

Section: Methodological Challengesmentioning

confidence: 99%

An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent

Shepherd

2020

Trials

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Background: There is increasing international recognition that populations included in trials should adequately represent the population treated in clinical practice; however, adults who lack the capacity to provide informed consent are frequently excluded from trials. Addressing the under-representation of groups such as those with impaired capacity to consent is essential to develop effective interventions and provide these groups with the opportunity to benefit from evidence-based care. While the spotlight has been on ensuring only appropriate and justifiable exclusion criteria are used in trials, barriers to the inclusion of adults lacking capacity are multifactorial and complex, and addressing their under-representation will require more than merely widening eligibility criteria. This commentary draws on the literature exploring the inclusion of adults lacking the capacity to consent in research and a number of recent studies to describe the methodological, structural, and systemic factors that have been identified. Main text: A number of potentially modifiable factors contributing to the under-representation of adults lacking the capacity to consent in trials have been identified. In addition to restrictive eligibility criteria, methodological issues include developing appropriate interventions and outcome measures for populations with impaired capacity. Structurally determined factors include the resource-intensive nature of these trials, the requirement for more appropriate research infrastructure, and a lack of interventions to inform and support proxy decision-makers. Systemic factors include the complexities of the legal frameworks, the challenges of ethical review processes, and paternalistic attitudes towards protecting adults with incapacity from the perceived harms of research.

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“…Added to these challenges are a lack of psychometrically sound measures of psychiatric symptoms that have been validated in individuals with severe IDs (Flynn et al . ).…”

Section: Introductionmentioning

confidence: 97%

“…There are several likely causes for this discrepancy and the lack of clear understanding about anxiety in this population. First, because individuals with AS are almost all non-verbal and have severe cognitive impairments, they are unable to provide a self-report of their emotions and experiences (Adams & Oliver 2011); therefore, reporting of anxiety becomes reliant on proxy reporting by caregivers or other observers (Flynn et al 2017). Proxy reports have their own set of issues, including how the reporter interprets observable behaviours.…”

Section: Introductionmentioning

confidence: 99%

“…This may be an especially salient issue in AS, where behaviours such as irritability, restlessness, repetitive behaviours, crying and somatic issues could be perceived as related to anxiety or attributed to neurological issues, pain, gastrointestinal problems or frustration with lack of communication. Added to these challenges are a lack of psychometrically sound measures of psychiatric symptoms that have been validated in individuals with severe IDs (Flynn et al 2017).…”

Section: Introductionmentioning

confidence: 99%

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Anxiety‐associated and separation distress‐associated behaviours in Angelman syndrome

Wheeler

Okoniewski

Wylie

et al. 2019

J intellect Disabil Res

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Background Anxiety is considered a ‘frequent’ feature in the clinical criteria for Angelman syndrome; however, the nature and severity of anxiety symptoms have not been well characterised in this population. Anxiety behaviours, especially in response to separation from a preferred caregiver, have been described clinically but have not yet been explored empirically. Method This study used a combination of standardised and clinician‐derived survey items to assess the frequency, nature and severity of behaviours associated with anxiety and separation distress in 100 individuals with Angelman syndrome. Family (e.g. income and maternal education) and individual (e.g. age, sex, genetic subtype, sleep difficulties and aggressive behaviours) variables were also gathered to assess possible predictors of higher anxiety levels. Approximately half of the sample was seen in clinic and assessed with standardised measures of development and daily functioning, allowing for an additional exploration of the association between anxiety symptoms and extent of cognitive impairment. Results Anxiety concerns were reported in 40% of the sample, almost 70% were reported to have a preferred caregiver and over half displayed distress when separated from that caregiver. Individuals with the deletion subtype and individuals who are younger were less likely to have anxiety behaviours. Sleep difficulties and aggressive behaviour consistently significantly predicted total anxiety, the latter suggesting a need for future studies to tease apart differences between anxiety and aggression or anger in this population. Conclusions Anxiety concerns, especially separation distress, are common in individuals with Angelman syndrome and represent an area of unmet need for this population.

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Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review

Cited by 76 publications

References 60 publications

Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

An under-represented and underserved population in trials: methodological, structural, and systemic barriers to the inclusion of adults lacking capacity to consent

Anxiety‐associated and separation distress‐associated behaviours in Angelman syndrome

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