The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey

Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants’ experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing “long COVID” (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

Including people with intellectual disabilities in the development of their own positive behaviour support plans

Purpose People with intellectual disabilities are not routinely involved in the assessment of their behaviours that challenge, as this is often completed by a proxy respondent and the health-care professional. This is contrary to guidance stating that everyone should be involved in the planning of their care. This paper aims to show how health-care professionals can support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the subsequent development of their own positive behaviour support (PBS) plans. Design/methodology/approach A non-systematic review of the existing literature on improving the engagement of people with learning disabilities in health-care planning, and specifically PBS planning, was undertaken. Appropriate papers were included in this paper. Findings There are several evidence-based methods to improve people’s engagement in the assessment of their own behaviours that challenge and then the development of their PBS plans. These methods are discussed in terms of their application to supporting people to communicate and involving them in the process of developing a valid and meaningful PBS plan. This is a relatively new focus within the literature, and further research should focus on increasing engagement in the process, as well as monitoring how co-production affects PBS outcomes. Originality/value This paper summarises some of the approaches used to support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the development of their own PBS plans. This should encourage health-care professionals to consider how to use alternative and augmentative communication strategies to facilitate co-production in their own clinical practice.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey

Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants’ experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing “long COVID” (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

Underreporting in HIV-Related High-Risk Behaviors: Comparing the Results of Multiple Data Collection Methods in a Behavioral Survey of Prisoners in Iran

We explored the potential of using three indirect methods including crosswise, proxy respondent method, and network scale-up (NSU) in comparison with direct questioning in collecting sensitive and socially stigmatized HIV-related risk behavior information from Iranian prisoners. Participants reported more sexual contact in prison for their friends than they did for themselves. In men, NSU provided lower estimates than direct questioning, whereas in women NSU estimates were higher. Different data collection methods provide different estimates and collectively offer a more comprehensive picture of HIV-related risk behaviors in prisons.