Prevalence estimation of intellectual disability using national administrative and household survey data: The importance of survey question specificity

BACKGROUND: Variability in prevalence estimation of intellectual disability has been attributed to heterogeneity in study settings, methodologies, and intellectual disability case definitions. Among studies based on national household survey data specifically, variability in prevalence estimation has partly been attributed to the level of specificity of the survey questions employed to determine the presence of intellectual disability. SPECIFIC AIMS & METHOD: Using standardised difference scoring, and ‘intellectual disability’ survey data from the 2007 Northern Ireland Survey on Activity Limitation and Disability (NISALD) (N=23,689) and the 2011 Northern Ireland Census (N=1,770,217) the following study had two aims. First, we aimed to demonstrate the effects of survey question specificity on intellectual disability prevalence estimation. Second, we aimed to produce reliable estimates of the geographic variation of intellectual disability within private households in Northern Ireland while also assessing the socio-demographic, health-related and disability characteristics of this population. FINDINGS: Prevalence estimates generated using the more crudely classified intellectual disability Census data indicated a prevalence of 2% for the overall population, 3.8% for children aged between 0 and 15 years, and 1.5% for citizens aged 16 years or older. Intellectual disability prevalence estimates generated using the more explicitly defined 2007 NISALD data indicated a population prevalence of 0.5% for the overall population, 1.3% for children aged between 0 and 15 years, and 0.3% for citizens aged 16 years or older. The NISALD estimates were consistent with most recent international meta-analysis prevalence estimates. According to the NISALD data, the majority of those with an intellectual disability were male, lived outside Belfast, and experienced severe intellectual disability, with multiple comorbid health conditions. DISCUSSION: The current findings highlight the importance of survey question specificity in the estimation of intellectual disability prevalence and provide reliable prevalence estimates of intellectual disability in Northern Ireland. The findings also demonstrate the utility of administrative data for detecting and understanding intellectual disability, and inform recommendations on how to maximise use of future intellectual disability Census dat

Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study

Background: Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. Methods: An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. Results: A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents’ levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person’s ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. Conclusions: Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes

Learning Disability and Northern Ireland: Achieving Proportionate Universalism through Administrative Data Research

Background The Department of Health, Social Services & Public Safety’s policy document ‘Fit and Well – Changing Lives (2012-2022)’ indicates that people with a learning disability (LD) represent one of the most vulnerable and disadvantaged groups in Northern Ireland (NI). Individuals with a LD are more likely to experience major illnesses, to develop them earlier, and die of them sooner, than the general population. Furthermore, the LD population is less likely to get some of the evidence-based annual health checks and treatments they need, and continue to face real barriers in accessing services. At present there is no central register detailing the actual number of individuals with LD in NI. Study aims The study is based on research funded by the ESRC SDAI (ES/P002293/1). It involves the analysis of Northern Ireland Mortality Study (NIMS) data to: • Establish the socio-demographic characteristics of the LD population; • Profile morbidity and comorbidity of health care problems among individuals with LD; and • Explore the causes of death among the NI LD community. Results and Conclusions Preliminary study findings will be available by June 2018. Findings will be of particular interest to a range of government departments, trusts and learning disability support groups

Advance care planning: exploration of the public’s understanding. In Abstracts from the 11th EAPC World Research Congress Online, 7th – 9th October 2020

Background/aims: Advance care planning, a voluntary process whereby an individual outline their preferences and beliefs, to aid in planning for end of life care, is widely considered an essential step for achieving a `good death”. Raising awareness of ACP is one of the key strategies within a public health approach to palliative care. However, research into the public’s awareness and participation of ACP remains limited.Methods: Qualitative method, comprising of 20 in-depth exploratory interviews and two focus groups (n=5) were undertaken with a purposive sample of adults (n=25). Data were analysed using NVivo 10 software, based on thematic analysis.Results: Whilst participants supported the concept of ACP, confusion regarding the terminology, utilisation and application existed. Beliefs that prior exposure to illness was the key prompt to engaging and developing such plans, led to misconceptions regarding their focus and who was involved in their development. Most participants had not engaged in ACP, believing them not to be relevant nor flexible to changes throughout the life course. Key elements identified of a public health approach to ACP included engagement and health education.Conclusions: Whilst ACP was deemed a worthwhile health behaviour, a lack of understanding and information were major barriers to adoption. The results offer an insight into the public’s awareness of ACP highlighting the need for greater public health initiatives to promote this