Health research aiming to bring people back from the margins of good health

Plain English summary

People with learning disability often have worse health than people who don’t have a learning disability. While we have known this for a long time, we have not had all the information that we need to fix the problem.

Special Olympics New Zealand has been trying to meet the health needs of Special Olympic Athletes by checking people’s health at the National Summer Games. The Donald Beasley Institute has been working with Special Olympics New Zealand to use this health information to work out who is most likely to have certain health problems.

We have also been trying to learn more about what people know about their own health, and how they look after their health. This can help us to make sure people with learning disability are at least as healthy as people without learning disability. 

About the research

International research has consistently described people with a learning disability as experiencing poorer health outcomes than the general population. In 2003, the National Health Committee (NHC) sought to provide impetus to disability related health research by characterizing health care provision for adults with a learning disability as “disturbing.” Since 2003, however, people with a learning disability have remained largely invisible within New Zealand population health surveillance. Only three recent New Zealand studies have purposefully set out to describe a broad range of health outcomes for people with a learning disability, two of which have emerged from a research partnership that has developed between Special Olympics New Zealand and the DBI.

As a response to the poorer health status of Special Olympic athletes, Special Olympics  International developed seven standardized health assessment screens which they offer at Special Olympic events through the Healthy Athletes Program (HAP). In 2011 Special Olympics New Zealand (SONZ) commissioned the DBI to analyse health information collected from athletes who chose to participate in the HAP at the 2005 (2996 screens) and 2009 (3118 screens) National Summer Games. This research was the first to use HAP data to explore the health status of people with a learning disability at a national level and provided New Zealand with its first snapshot of the visual, auditory, oral and podiatry health of people with a learning disability.

In 2011, SONZ added the Special Olympics Health Promotion screen to the repertoire of HAP screens available to New Zealand athletes. The Health Promotion screen, like others in the program, seeks to increase the investment of health professionals whilst also educating to improve the health literacy and health behaviours of Special Olympic athletes. In 2012, the DBI received a Lotteries Health Research Grant to analyse data provided by people who chose to participate in the first two administrations of the Health Promotion screen (206 participants). The overarching aim of the project was to describe and learn more about variation in the health knowledge and behaviour of participants as a first step towards understanding the linkages between health literacy, lived experience and the poorer health outcomes experienced by people with a learning disability.

Both projects added to the picture of relative health disadvantage experienced by people with a learning disability. Key findings from the first study included the high prevalence of external and internal eye health problems. Half of the athletes screened at the 2009 Summer Games required corrective lenses. Undiagnosed cataracts were found in 13% of athletes, three out of every four athletes failed an otoacoustic emission screen and 45% had a blockage in one or both ears. Untreated decay was found in a quarter of athletes and one or more biomechanical abnormalities were detected in eight out of every ten athletes.

In the second study a high rate of medication use was identified, especially for people who lived in (staffed) community group homes. Findings affirmed research describing the prevalence of obesity in people with a learning disability as higher than the general population and identified people living in more independent support contexts population at greatest risk. It also indicated that people with a learning disability may be at greater risk of undiagnosed hypertension and Type 2 diabetes than other New Zealanders.

Analysis of direct measures of Special Olympic athletes' health status have the potential to provide the disability community with an important benchmark against which to measure the efficacy of future interventions designed to improve the health and wellbeing of New Zealanders with a learning disability. Moreover, a range of associations discovered between specific negative health outcomes and a range of demographic and environmental predictors provide important clues about where to look to most effectively address this significant public health inequality.

Dissemination of research findings

Reports

  • Milner P. & Mirfin-Veitch B. (2013). Special Olympics New Zealand Athlete Health Overview. www.specialolympics.org.nz/Be-a-Volunteer/Healthy-Athletes/Athlete-Health-overview/SONZ-Health-Report_Final.aspx
  • Milner P., Mirfin-Veitch B. & Conder, J. (2013) On the Margins of Good Health: An analysis of the health status, health knowledge and health literacy of people with a learning disability who completed the Special Olympic HAS Health Promotion Screen. Dunedin: Donald Beasley Institute

Presentations

  • Mirfin-Veitch, B. & Milner, P. (2012) “On the margins of good health”: An ongoing analysis of the health of New Zealand Special Olympic athletes.Paper presented to 47th Australasian ASID Conference, 7-9 November, 2012. Wellington.