Katie Brooker

Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research

Aims: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. Methods: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. Results: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. Conclusions: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.

Perceptions and experiences of access to public healthcare by people with disabilities and older people in Uganda

IntroductionIn the year 2000, a set of eight Millennium Development Goals (MDGs) were presented as a way to channel global efforts into the reduction of poverty and the promotion of social development. A global discussion regarding how to renew these goals is underway and it is in this context that the Goals and Governance for Global Health (Go4Health) research consortium conducted consultations with marginalized communities in Asia, Latin America, the Pacific and Africa as a way to include their voices in world’s new development agenda. The goal of this paper is to present the findings of the consultations carried out in Uganda with two groups within low-resource settings: older people and people living with disabilities.MethodsThis qualitative study used focus group discussions and key informant interviews with older people in Uganda’s Kamwenge district, and with persons with disabilities from the Gulu region. Thematic analysis was performed and emerging categories and themes identified and presented in the findings.FindingsOur findings show that a sense of community marginalization is present within both older persons and persons living with disabilities. These groups report experiencing political sidelining, discrimination and inequitable access to health services. This is seen as the key reason for their poor health. Clinical services were found to be of low quality with little or no access to facilities, trained personnel, and drugs and there are no rehabilitative or mental health services available.ConclusionUganda must fulfil its international obligations and take progressive measures to meet the right to health for all its peoples, but especially allocate its limited resources to proactively support its most marginalized citizens. The growing impetus within post-2015 development negotiations to redress in-country health and other inequalities through a comprehensive systems approach is of importance in the Ugandan development context. This approach reflects the participant’s perspectives, which also calls for a more equitable approach to health and development as opposed to a narrow, vertical focus on specific population groups, as was the case with the MDGs.

Systematic Review of Interventions Aiming to Improve Involvement in Physical Activity Among Adults With Intellectual Disability

BACKGROUND Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. METHODS Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. RESULTS Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. CONCLUSIONS PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

Incorporating patient preferences in the management of multiple long-term conditions: is this a role for clinical practice guidelines?

Background Clinical practice guidelines provide an evidence-based approach to managing single chronic conditions, but their applicability to multiple conditions has been actively debated. Incorporating patient-preference recommendations and involving consumers in guideline development may enhance their applicability, but further understanding is needed. Objectives To assess guidelines that include recommendations for comorbid conditions to determine the extent to which they incorporate patient-preference recommendations; use consumer-engagement processes during development, and, if so, whether these processes produce more patient-preference recommendations; and meet standard quality criteria, particularly in relation to stakeholder involvement. Design A review of Australian guidelines published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care. Document analysis of guidelines examined the presence of patient-preference recommendations and the consumer-engagement processes used. The Appraisal of Guidelines for Research and Evaluation instrument was used to assess guideline quality. Results Thirteen guidelines were reviewed. Twelve included at least one core patient-preference recommendation. Ten used consumer-engagement processes, including participation in development groups (seven guidelines) and reviewing drafts (ten guidelines). More extensive consumer engagement was generally linked to greater incorporation of patient-preference recommendations. Overall quality of guidelines was mixed, particularly in relation to stakeholder involvement. Conclusions Guidelines do incorporate some patient-preference recommendations, but more explicit acknowledgement is required. Consumer-engagement processes used during guideline development have the potential to assist in identifying patient preferences, but further research is needed. Clarification of the consumer role and investment in consumer training may strengthen these processes.

Flipping a Collaborative Classroom to Gain Deeper Understanding of the Health System

The Health Systems and Policy course provides a broad introduction and overview of the Australian health system but has had to overcome the challenge that many students anticipate a dry and boring course of limited relevance or interest. We decided to take a different and more integrated approach that would foster deeper learning through the introduction of collaborative processes that placed students at the centre of class discussions. Learning objectives, teaching activities and assessment were realigned, and activities were developed to establish foundational knowledge outside the classroom that would inform and support discussion, reflection, engagement and debate within the classroom. The following chapter maps our teaching team’s journey through the redevelopment of The Health Systems and Policy course. The chapter is divided into four sections. The first describes what we did, the second outlines how we did it, and the third reflects on our experiences. Some members of the teaching team maintained regular diaries of the semester; these reflections inform section three. In the final section, we briefly discuss some ‘next steps’.

Barriers and enablers to performing population studies in people with intellectual disability

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.

A consensus statement on how to conduct inclusive health research: Consensus statement on inclusive health research

BACKGROUND The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. METHOD A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. RESULTS This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. CONCLUSIONS Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

The relationship between social support and physical activity for adults with intellectual disabilities

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

Applying inclusive qualitative research practices with adults with intellectual disabilities: some reflections

Aim: Research on co-morbid health conditions experienced by people with autism spectrum disorder (ASD) is underdeveloped. This study aimed to systematically review existing systematic reviews and meta-analyses in order to identify evidence on the physical and mental health needs of people with ASD. Method: A literature search was conducted through PsycINFO, Scopus, CINAHL, Medline, and Cochrane databases an was limited to systematic reviews and meta-analyses published between 2005 and 2015. The following search terms were used: ‘autis*’ OR ‘pervasive developmental disorder’ OR ‘Asperger*’ OR ‘ASD’. Results: Out of 3,035 results, 243 articles were identified as potentially relevant and chosen for further review; 20 articles met the inclusion criteria. These focussed on mental health conditions (n=8), physical and genetic conditions (n=7),epilepsy (n=3), gender differences in health needs (n=1)and health problems in aging populations (n=1).Conclusions: Individuals with ASD experience a variety of co-morbid health problems, and frequently more than one condition co-occurs with autism. Whilst evidence exists regarding prevalence of co-morbidities, significant heterogeneity of studies and inconsistent reporting impact on the quality of systematic reviews and meta-analyses in this field.