The experiences and views of adults with intellectual disabilities accessing digital mental health interventions: A qualitative systematic review and thematic synthesis

Background

Technology is ubiquitous in all aspects of daily life and research interest in the topic of digital mental health interventions (DMHI) for people with intellectual disabilities is growing. In addition, the COVID-19 pandemic has accelerated technology use in delivering mental health supports.

Method

This review used a qualitative systematic literature review methodology with the aim of collating the views and experiences of adults with intellectual disabilities accessing DMHI. The electronic databases MEDLINE, PsycINFO, CINAHL and SCOPUS were searched in March 2022.

Results

Five studies were selected in this review, and three major narrative themes were generated, each with sub-themes: (1) User experience with DMHI (personal experience, digital experience); (2) Relationships fostered through technology (interpersonal support, relating to virtual characters, computer as skilled helper); (3) Psychological benefits (new skills development, personal autonomy development).

Conclusion

This review highlights that, although there is a diversity of views and experiences of people with intellectual disabilities, the evidence suggests that DMHI has potential to support this population given the right opportunities. Findings also point to the benefit of technology as a complement to therapy, but not necessarily as a replacement to in-person therapeutic encounters.     

How do Australian mental health services use easy read to make information accessible for people with intellectual disability?

Introduction

Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services.

Methods

Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data.

Results

Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information.

Conclusion

People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity.

Implications

Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.     

The impact of mindfulness interventions for staff on the care,treatment, and experiences of people with intellectual disabilities: A systematic review

Background

Mindfulness interventions have been shown to ameliorate stress in support staff working with people with intellectual disabilities. This review aimed to explore what impact mindfulness interventions for staff have on their care and support behaviours, and on the experiences of people with intellectual disabilities receiving support.

Method

A systematic search of PsycINFO, Web of Science, ASSIA, and PubMed identified nine studies meeting the inclusion criteria. Outcomes were collated and a quality assessment tool was used to inform the critical analysis of the studies.

Results

Despite identified methodological issues, positive results were consistently reported. These included reduced use of restrictive practices by staff, increased positive interactions between staff and people with intellectual disabilities, and reduced aggression displayed by people with intellectual disabilities.

Conclusions

Further research in this area is required; however, this review supports the benefits of mindfulness on staff behaviour and the quality of life of people with intellectual disabilities.     

Transition to retirement: The lived experiences of adults with intellectual disabilities

Background

Adults with intellectual disabilities are living longer and experiencing retirement. However, research about retirement experiences is limited.

Method

This qualitative study used semi-structured interviews with 10 retired/retiring U.S. adults with intellectual disabilities and an ally of their choice.

Results

Participants described factors that pushed or pulled them into retirement, such as health issues or wanting to spend more time with family. Individuals in community work settings described greater self-determination in their decision to retire. Regardless of reasons for retiring, all participants described initial difficulties with adjusting to retirement but over time people's situation, including their mental and physical health, reportedly improved.

Conclusion

Retirement is a significant life transition. More attention is needed about planning and developing age-appropriate and person-cantered inclusive retirement options for older adults with intellectual disabilities, similar to the transition into adulthood and work life.     

Preventing falls at home among people with intellectual disabilities: A scoping review

Background

Falls are common among people with intellectual disabilities. Many falls happen within the home. Our scoping review aimed to identify evidence for falls-risk factors and falls-prevention interventions for this population.

Method

We conducted a multi-database search to identify any type of published study that explored falls-risk factors or falls-prevention interventions for people with intellectual disabilities. Following a process of (i) title & abstract and (ii) full-text screening, data was extracted from the included studies and described narratively.

Results

Forty-one studies were included. Risks are multifactorial. There was limited evidence of medical, behavioural/psychological, or environmental interventions to address modifiable risk factors, and no evidence of the interventions' cost-effectiveness.

Conclusions

Clinically and cost effective, acceptable and accessible falls-prevention pathways should be available for people with intellectual disabilities who are at risk of falls from an earlier age than the general population.     

Outcome measures for economic evaluations and cost-effectiveness analyses of interventions for people with intellectual disabilities: A methodological systematic review

Background

Mainstream economic evaluations methods may not be appropriate to capture the range of effects triggered by interventions for people with intellectual disabilities. In this systematic review, we aimed to identify, assess and synthesise the arguments in the literature on how the effects of interventions for people with intellectual disabilities could be measured in economic evaluations.

Method

We searched for studies providing relevant arguments by running multi-database, backward, forward citation and grey literature searches. Following title/abstract and full-text screening, the arguments extracted from the included studies were summarised and qualitatively assessed in a narrative synthesis.

Results

Our final analysis included three studies, with their arguments summarised in different methodological areas.

Conclusions

Based on the evidence, we suggest the use of techniques more attuned to the population with intellectual disabilities, such sensitive preference-based instruments to collect health states data, and mapping algorithms to obtain utility values.     

Educational challenges for 22q11.2 deletion syndrome in Japan: Findings from a mixed methods survey

Background

The 22q11.2 deletion syndrome (22q11DS) is characterised by a changing pattern of overlapping intellectual, physical, and mental disabilities along the course of one's life. However, the impact of overlapping disorders (multimorbidity) on educational challenges remains unclear.

Method

A survey was conducted with 88 caregivers of individuals with 22q11DS. A quantitative analysis of educational challenges and support needs divided into age groups (7–12, 13–15, 16–18, and 19 years and over) and a qualitative analysis of the free-text items in the questionnaire was conducted.

Results

Caregivers were more interested in comprehensive developmental support when their children were younger, and the emphasis shifted to concerns regarding environments that matched individual characteristics at older ages. Furthermore, when there are multiple disabilities or disorders, support is concentrated on the more obvious disabilities, and the lack of support for the less superficially obvious disabilities associated with multiple difficulties, including mental health problems, can be a challenge for people with 22q11DS and their families.

Conclusions

This study suggests a need for increased focus on multimorbidity and associated disabilities in school education that are difficult to observe because of their mildness or borderline levels if present alone.     

Exploring the Development of Existing Sex Education Programmes for People with Intellectual Disabilities: An Intervention Mapping Approach

Background

People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes.

Methods

Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers.

Results

All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation.

Conclusions

Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory‐ and evidence‐based approach.     

Inclusive nursing care for people with intellectual disabilities using urology services

The need to address the health needs and provide equity of access to health care for people with intellectual disabilities has been highlighted nationally within the UK, as well as internationally. Despite a similar likelihood (if not an increased likelihood) of urological problems among people with intellectual disabilities, this topic appears to have received limited attention within the wider nursing or the specific intellectual disability literature. This paper considers the potential challenges that may be encountered in seeking to provide care and support a person with intellectual disabilities who may require the support of a urology nurse and provides some suggestions for practical actions to respond effectively.     

Medical Certificates of Cause of Death for people with intellectual disabilities: A systematic literature review

Background

Mortality studies can help reduce health inequalities by informing public policy through a better understanding of causes of death and comorbidities. Mortality studies often rely on Medical Certificates of Cause of Death (MCCD) for data.

Method

A systematic review was undertaken to identify the extent and nature of issues in recording causes of death for people with intellectual disability on MCCD.

Results

Fifteen of the 25 articles included in the literature review raised concerns about the accuracy of MCCD in identifying the cause(s) of death of people with intellectual disability. The most frequent issues were the under‐reporting of intellectual disability on MCCD, and listing intellectual disability or an associated condition as an underlying cause of death.

Conclusions

Concerns about the accuracy and reliability of MCCD for people with intellectual disability raise questions about mortality data based on MCCD. Clear guidance is required from WHO for those completing MCCD for people with intellectual disability.     

Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy

Background

While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear.

Method

We conducted semi-structured interviews with six adults (four men, two women) aged 30–61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis.

Results

Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control.

Conclusions

In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.     

Disability studies in Sri Lanka: priorities for action

Abstract

Purpose: To review the published literature relating to disability in Sri Lanka, identify research gaps and inform priorities for action. Methods: A narrative literature review was undertaken and relevant articles extracted using electronic databases such as Medline and PubMed. The available literature was examined in relation to the nine key recommendations of the World Report on Disability. Results: Over the past 30 years, published disability research in Sri Lanka has primarily focussed on mental health, visual impairment and healthcare delivery. Significant gaps were apparent in evidence relating to the status and services for people with intellectual disability, policies and their impact, provider attitudes, barriers to education and employment, health workforce training and access to healthcare. Conclusions: While published studies provide insights on several dimensions of disability, there are important research gaps pointing to unmet needs that require attention to support the health and wellbeing of people living with disability in Sri Lanka. To address these gaps, it is imperative that a critical mass of multi-disciplinary researchers including people living with disabilities collaborate on a strategic program of research using effective participatory approaches that engage all sectors and communities relevant to uphold the rights of people living with disability.

• Implications for Rehabilitation

• All nine key recommendations in the World Report on Disability are highly pertinent to the needs and status of people living with disabilities in Sri Lanka.

• Significant gaps in research on disability-related health issues exist and warrant more focussed attention by researchers, funders and policy makers.

• It is imperative that national stakeholders including the Ministries of Health and Social Welfare, organisations representing people living with disability and related advocacy groups, work collaboratively to identify and implement a research strategy that would better inform disability policies and programmes that have access and equity as core principles.

• Implementation of a national disability survey by the Department of Census and Statistics, will help prioritize disability research in the country.

     

Schizophrenia in autistic people with intellectual disabilities: Symptom manifestations and identification

Background

The assessment of schizophrenia in autistic people with intellectual disabilities is challenging. This study aimed to explore the identification of schizophrenia in this population.

Methods

Using data from a clinical multi-centre study, reported symptoms in 26 autistic individuals with intellectual disabilities diagnosed with co-occurring schizophrenia were explored. Scores on two checklists (Psychopathology in Autism Checklist [PAC], Aberrant Behaviour Checklist [ABC]) were compared with two comparison groups: autistic individuals with intellectual disabilities and other mental disorders (94), or no mental disorder (63).

Results

Reported symptoms of schizophrenia in this population met the formal diagnostic criteria. For PAC/ABC scales, only PAC psychosis differed for the schizophrenia group. Among participants with schizophrenia, two were diagnosed with additional mental disorders. Elevated scores for anxiety and depression were common.

Conclusions

Emphasising core symptoms seems necessary when assessing co-occurring schizophrenia in autistic people with intellectual disabilities. The PAC may serve as a helpful screening tool.     

Exploring the psychometric properties of self-report instruments used to measure health-related quality of life and subjective wellbeing of adolescents with intellectual disabilities: A Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) systematic review

Background

Studies that have systematically reviewed the psychometric properties of health-related quality of life (HRQoL) and subjective wellbeing instruments for adolescents with intellectual disabilities narrowly focus on disease or health-specific conditions. This review aimed to critically appraise the psychometric properties of self-report instruments used to measure HRQoL and subjective wellbeing of adolescents with intellectual disabilities.

Method

A systematic search was undertaken in four databases. The quality of the included studies and their psychometric properties was assessed according to the COnsensus-based Standards for the selection of health Measurement Instruments Risk of Bias checklist.

Results

Seven studies reported psychometric properties of five different instruments. Only one instrument identified as having potential to be recommended for use but requires further validation research to assess its quality for this population.

Conclusions

There is insufficient evidence to support the recommendation of a self-report instrument to assess HRQoL and subjective wellbeing of adolescents with intellectual disabilities.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co-researchers involved and what are their experiences?

Background

Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised.

Method

Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised.

Results

Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed-methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible.

Conclusions

Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.     

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Background

People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK.

Method

A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis.

Results

Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis.

Conclusions

More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.     

The UK psychiatrists' experience of rationalising antipsychotics in adults with intellectual disabilities: A qualitative data analysis of free-text questionnaire responses

Background

Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, ‘STopping Over-Medication of People with learning disabilities, autism or both (STOMP)’, to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative.

Methods

An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software.

Results

Eighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation.

Conclusions

Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom.     

Effect of the environmental factor of coexistence on the physical condition of people with mild and moderate intellectual disabilities

Background

The main objective of this study was to compare the physical condition of people with intellectual disabilities living in residential homes (RH; restricted residential environment) versus independent homes (IH; family houses while performing paid work). The effect of gender on physical condition was also evaluated separately for each group.

Method

Sixty individuals with mild to moderate intellectual disability, 30 living in RH and 30 living in IH, participated in this study. The RH and IH groups were homogeneous in terms of gender distribution (17 males and 13 females) and intellectual disability level. Body composition, postural balance, and static and dynamic force were considered as dependent variables.

Results

The IH group performed better in the postural balance and dynamic force tests compared to the RH group, but no significant differences between the groups were observed for any body composition or static force variable. Women in both groups tended to have better postural balance than men, while men presented higher dynamic force.

Conclusions

The IH group presented a higher physical fitness compared to RH group. This result emphasises the need to increase the frequency and intensity of the physical activity sessions commonly programed for individuals living in RH.     

Supported Employment: a Route to Social Networks

Background Evidence suggests that social networks mediate social functioning, self‐esteem, mental health and quality of life. This paper presents findings concerning changes in the social lives, skills, behaviour and life experiences of a group of people with intellectual disabilities (n = 18), who gained support from an employment agency to find paid work. Method The composition and quality of individuals’ social networks were mapped using a Social Network Guide. Changes in skills, behaviour and life experiences were assessed using standardized measures. Results The social network size of participants increased over time, with most social contacts being drawn from community contexts. This linked to improvements in life experiences, particularly in relation to leisure activities. Some improvements in adaptive behaviour were also found over time but no significant relationship between social network size and changes in adaptive behaviour were evident. Conclusions Whilst work will not guarantee social relationships, it can help maintain network size and provides a good opportunity for people with intellectual disabilities to meet others who are not associated with intellectual disability services.