Palliative and end-of-life care, people with intellectual disabilities & COVID-19 (PEPIC-19): An international survey

Background: People with intellectual disabilities (ID) have worse health outcomes and face inequalities at the end of life. It is not clear how Covid-19 has affected end of life care. Aim: To gain insight into the perceived COVID19 related changes in provision, quality and challenges of palliative and end-of-life care to people with ID in countries across the world. Method: An international anonymous online survey, aimed at health/ social care professionals, was developed by 15 researchers from 10 countries (part of the EAPC Reference Group on Intellectual Disabilities). It was based on the 2015 EAPC White Paper on ID describing 13 good practice norms. Data were analysed using descriptive statistics, with content analysis of free text. Results: 471 respondents from 19 countries completed the survey between Oct 2020-Mar 2021 (88% health/social care professionals, 12% academic/educators). North West Europe was over-represented, but responses were received from other countries including USA, Australia and Asia. Areas of end-of-life care most frequently reported as less in line with the 13 investigated norms were 'adequate bereavement support for people with ID' (40%) and 'adequate training/support for healthcare staff' (40%). Areas showing the greatest concordance with these norms were 'access to hospital care when needed' (62%) and 'families involved in end-of-life decisions' (50%). Areas that most respondents reported as worse during the pandemic were 'people with ID attending funerals' (57%), 'opportunities for families to be involved in care' (49%) and 'adequate support from health/social care professionals for the end of life needs of people with ID' (41%). Conclusion: There are significant challenges in providing end of life care for people with ID, these have been exacerbated by Covid-19. This survey provides important indicators for developing policy, practice and research priorities, and is a starting point for further research.

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.

The impact of COVID-19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland.

BACKGROUND: Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). METHODS: The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-existing participants interviewed before COVID-19 (n = 444) were compared with data for pre-existing participants interviewed during/after lockdown (n = 62). RESULTS: More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post-lockdown group reported access to and use of technology than the pre-lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. CONCLUSIONS: During the early stages of the COVID-19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID-19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID-19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.

Delivering bronchiectasis physiotherapy clinics remotely: Patient perceptions and future preferences

Background/Aims: National guidelines recommend that patients with bronchiectasis should be reviewed by specialist physiotherapists (Polverino et al., 2017). These appointments should involve teaching of individualised airway clearance techniques, promotion of exercise and education to optimise self-management. During the covid pandemic, face to face appointments were cancelled. Ways of conducting effective physiotherapy consultations remotely were required. We used telephone and video respiratory physiotherapy consultations. We assessed patient satisfaction with remote consultations and views on future modes of clinic delivery. Methods: All patients contacted for a predetermined physiotherapy clinic between 21/4/20 and 29/6/20 were asked questions regarding their consultation and preferences (Table 1). Telephone and video calls were carried out by PM. Data was collected via follow up phone calls using a pre-selected questionnaire or postal questionnaire. Data was recorded and analysed using Excel plus thematic analysis for free text responses. Results: Thirty telephone and 35 virtual consultations were offered. 12 virtual consultations were converted to telephone due to lack of internet access. Thirty-nine (60%) were new referrals, 26 (40%) were reviews. Median age was 65 (range 21-91). Median telephone call duration was 29 minutes (range 15-40). Beyond covid-19 restrictions, twenty-four (37%) preferred a virtual appointment;twenty-two (34%) telephone, four (6%) face to face consultation and fifteen (23%) had no preference. Conclusions: The majority of respondents (97%) were satisfied with remote consultation during covid restrictions. Interestingly, only 6% preferred to return to face to face (Table presented) appointments. Qualitative exploration of reasoning behind these decisions revealed two main themes: convenience and practicality and medical reasons and beliefs. In our cohort, 71% of patients preferred to continue remote physiotherapy clinics. Individual preferences on format and location of care are key components of NHS plans. Our data show that patient satisfaction can be maintained with remote delivery of respiratory physiotherapy, yet more work is needed to standardise and improve remote physiotherapy interventions. In addition to patient preference, ascertaining the comparative clinical effectiveness of appointment formats in the longer term will facilitate evidence-based provision of physiotherapy resources.