Advancing inclusive research with people with profound and multiple learning disabilities through a sensory-dialogical approach

People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research—even when intending to be inclusive—tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research. The review presents themes that will inform a discussion on how to challenge the criteria in ways that make it possible to understand inclusive research for people who communicate in unconventional ways. We argue that a fruitful way of rethinking inclusive research is by applying a sensory-dialogical approach that privileges the dialogical and sensory foundations of the research. We suggest this might be a way to understand inclusive research that regards the person’s communicative and cognitive distinctiveness.

Diversity training for health professionals: Preparedness to competently address intellectual disability in the Western Cape Province, South Africa

Diversity training for health professionals in South Africa has traditionally been conceptualized as differences in gender, race or ethnicity, culture and sexual orientation. More recently physical disability and mental illness was included as a dimension. Intellectual disabilities received lip service as a diversity concern. This paper reports on health professionals' perceptions of the extent to which diversity training prepared them to competently deal with intellectual disabilities. This explorative study included a purposive sample of 18 health care professionals experienced in intellectual disability services. Two focus groups were facilitated over three sessions. Transcripts were analysed thematically. Health professionals felt inadequately prepared to consider intellectual disabilities as a diversity issue. They could not effectively advocate for reasonable accommodation. There was a differential familiarity with issues related to diversity and intellectual disability with profession constituting an additional intersecting dimension of diversity. Health professions did not perceive their diversity training to prepare them to deal competently with intellectual disabilities.

Clinical letters to patients with intellectual disabilities after psychiatric review: A quality improvement project

Aim: This Quality Improvement Project sought to improve communication between patients with intellectual disabilities and their psychiatrists by sharing medical information using an easy read letter format following psychiatric review. Background: Writing directly to patients is in keeping with good medical practice. Previous studies have shown patients with intellectual disabilities prefer letters tailored to meet their needs. Method: An easy read letter was used by nine psychiatrists who handed them to 100 consecutive patients after review. Feedback of acceptability to patients was obtained using a three-item facial rating scale and the use of free text. Feedback of acceptability was obtained from participating psychiatrists. Results: Patients found the easy read letter helpful and felt it should be used routinely. Psychiatrists felt this approach was beneficial as well as aiding patient understanding of review. Conclusions: The easy read letter was reported to improve communication following psychiatric review. Limitations are acknowledged but it is concluded that an easy read letter should be adopted as routine practice following psychiatric review, for people with intellectual disabilities.

Crisis stabilisation services for people with intellectual disabilities: A systematic review

People with intellectual and developmental disabilities sometimes engage in challenging behaviours. When behaviours escalate to the point where they pose imminent risk to the safety of people and environments, a crisis occurs that jeopardises community living and participation. In these situations, timely access to crisis stabilisation services is required. We conducted a systematic review of the literature to synthesise evidence on effective crisis stabilisation service models for challenging behaviours. A total of 46 publications met the inclusion criteria. The literature describes a spectrum of crisis stabilisation services of varying intensities including: outreach, outpatient, inpatient, respite, and capacity building through education and training. However, there is limited guidance on how to best structure service models. This review highlights the need for comprehensive and person-centred programme evaluations.

Lessons learnt from transitioning to online mentoring and learning at university during COVID-19 for adults with intellectual disability

Background: COVID-19 influenced education delivery worldwide. The Up the Hill Project (UTHP), a university mentoring program in Australia for people with intellectual disability, transitioned from a face-to-face to online format during 2020. Results: The experience of transitioning online for one semester (12-week period) had positives and challenges associated with it. The UTHP Coordinator reported initial doubts for the online mode and identified the importance of at home support. However, the experience has opened up avenues for future program practices, such as intake processes and increased flexibility. From the participants’ perspective, the online experience supported participants to develop new technology skills. However, challenges were that participants needed support, and missed face-to-face contact. Conclusion: Online mentoring in the UTHP had challenges, but has also supported continuation of university programs. Lessons learnt will influence the development of the UTHP in some capacity into the future.

Transitioning to long-term care for older adults with intellectual disabilities: A concept analysis

Aim: To undertake a concept analysis of transitioning to long-term care for older adults with intellectual disabilities. Background: Individuals with an intellectual disability are experiencing increased longevity which is associated with an increase in transitions in later life to long-term care. Their experience of later life transitions is likely to be different to the general older population. Methodology: Concept Analysis was undertaken using the Walker and Avant framework. Results: Eight studies met the inclusion criteria. Defining attributes are an older person with intellectual disability; a planned relocation to a long-term care facility; person-centred; and supported decision-making. Conclusion: There is a dearth of empirical evidence and theorisation on this concept. Transitions of this nature have been inadequately informed by the perspective of the older person with an intellectual disability, and future research and practice requires greater efforts to include their voice.

Ageing people with intellectual disabilities and the association between frailty factors and social care: A Swedish national register study

The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.

Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic

Purpose: To compare functioning and environmental aspects before and during physical distancing (DPD) and to determine which social, physical, behavioral and functioning aspects of DPD are correlated. Methods: Sixteen parents of children/adolescents with Down syndrome (11.38 ± 3.00 years) were surveyed before and DPD. Paired t-tests were used to compare functioning and environmental aspects before and DPD and chi-square tests were used to test associations. Results: There were increases in the frequency (p < 0.001) and involvement (p = 0.01) in home participation and on the impact, noticed by the parents, of the possibility of child to participate in daily activities (p = 0.036), as well as a reduction in social supports perceived by caregivers (p = 0.049). An association was found between the child’s socio-emotional difficulties symptoms and practice of physical activity (p = 0.043) and with parents’ satisfaction with the level of child’s home participation (p = 0.042). Conclusion: Functioning can be affected in either positive or negative ways.

Examining physical activity and quality of life in adults with autism spectrum disorder and intellectual disability

Adults with autism and co-occurring intellectual disability engage in low levels of physical activity and are at increased risk of developing secondary health conditions attributed to physical inactivity compared to adults in the general population. Few studies have examined the use of objective measures to characterize physical activity levels for adults with autism and intellectual disability. The current study aimed to examine the relationship between physical activity, using an activity tracker, and quality of life in adults with autism and intellectual disability. In the current study, 38 adults with autism and intellectual disability, ages 18–55, wore a Fitbit Flex 2® activity tracker for 1 week, and completed the Quality of Life Questionnaire. The relationship between average daily step count quality of life was examined. Most adults in the sample were overweight and taking fewer daily steps than recommended guidelines. Increased average daily step count was significantly associated with quality of life.

Health promotion challenges for young adults living with intellectual disability and type 1 diabetes

Background: Self-management of type 1 diabetes mellitus (T1DM) can be challenging for people with intellectual disability. Often, parents provide health support due to lack of appropriate services outside the home. The study aim was to identify barriers and facilitators to T1DM self-management for young adults with intellectual disability and the implications for health promotion. Methods: Five male participants with intellectual disability, aged 17–26 years, and seven parents were interviewed between October 2017 and February 2019. Interview data were descriptively analysed. Findings: Two categories for barriers and facilitators were identified: 1) Diabetes self-management is complex (carbohydrate counting, blood glucose level monitoring, insulin therapy); 2) support for diabetes care (reliance on parents and carers, the National Disability Insurance Scheme, mainstream diabetes service support). Conclusions: Parents are critical for the support of people with intellectual disability and T1DM in the absence of disability staff with appropriate health skills.