Lorraine Ledger outlines the beginning, development and success of a novel approach to creating an educational resource about bone health, dealing with causes, risks, screening and prevention for bone issues, a considerable concern for people with an Intellectual Disability.
People with an intellectual disability need to look after their bones
Research shows that certain medications, lack of sunlight, not enough calcium in the diet are some of the factors that lead to thin bones.
Thin bones are more easily broken.
Happy Bones is a website and booklet to guide people how to look after their bones.
The Irish Longitudinal study on Ageing – Intellectual Disability Services (TILDA-IDS) Wave II report (2014) highlighted that osteoporosis is the most common non-cardiovascular disease among the Intellectual Disability (ID) population, higher than arthritis, cancers and respiratory conditions. While ageing is a factor, it would seem that regardless of age, sex or cause of Intellectual Disability, there is a high prevalence of osteopenia and osteoporosis among the ID population.
Thinning bones can lead to an increased risk of fractures which can occur from a simple slip, trip or fall, as a consequence of epileptic seizure activity or as a result of poor manual handling technique. The resultant fractures can have a detrimental effect on the person’s quality of life. Therefore it is imperative that people with ID, their families and all care givers are aware of the importance of preventing, evaluating and managing bone loss.
St. Michael’s House provides support to children and adults with a broad spectrum of intellectual disability in the greater Dublin region. Having witnessed the pain and discomfort of spontaneous factures caused by fragile bones in relatively young people with Intellectual Disability, a multidisciplinary team (MDT) made up of a doctor, a nurse, dieticians and physiotherapists came together to embark upon addressing the problem.
In 2011, a year-long bone health awareness programme was introduced. This commenced with sourcing national and international research relating to osteopenia/osteoporosis in people with intellectual disability. The evidence, albeit quite scarce, confirmed that due to failure to obtain peak bone mineral density during early adulthood, poor mobility, inadequate calcium and Vitamin D intake, lack of adequate weight-bearing exercises and adverse effects of certain medications, people with an ID have a much greater than average probability of developing osteoporosis at a young age. Therefore all service users with known risk factors, regardless of age, sex or disability were referred for DXA screening.
Performing DXA scans for people with an ID can be fraught with challenges, but not just because there are limited facilities that can accommodate wheelchair users; the requirement to lie still and straight for a few minutes can be difficult for some people, and the lack of understanding by other agencies of this population’s needs, proved testing at times.
Approximately 283 DXA results were recorded, and the results concurred with international research suggesting approximately 70% of this cohort have some degree of bone thinning.
The awareness programme also took the form of education sessions for staff, information leaflets for service users and a newsletter article for families.
Each member of the MDT was involved in the delivery of the ten information sessions, stressing the importance of a holistic approach to bone health. The nurse highlighted the risk factors, the need for screening, and prevention programmes. The dieticians explained the importance of Calcium and Vitamin D, amounts required and from which foods it can be sourced. The physiotherapist emphasised the need for weight-bearing exercises and stressed the risk of falls leading to fractures if bones are thinning or fragile. The doctor talked about drug and non-drug treatment regimes for bone health.
In order to learn more and keep the momentum going, St. Michael’s House linked with the Advanced Nurse Practitioner, Daragh Rodger, from St. Mary’s in the Park. Daragh and her team (which includes Anne Spencer, an educational technologist), have developed an impressive resource on bone health and falls prevention for older people. The St. Michael’s House team met with Daragh and Anne on a number of occasions, to tease out how to get the very important message disseminated that due to some unique factors, this cohort have a predisposition to thinning bones from a young age and therefore an increased risk of fractures.
Providing noteworthy information can be difficult and often too wordy to engage service users, so it was important to be guided by the people to whom we were trying to get the message. The content needed to be visual, fun and realistic. Anne and Daragh grasped this from the beginning, and embraced wholeheartedly working with people with ID. They met with and collaborated with a group of service users who attend Green St. – a resource centre in Dublin’s City Centre for people with ID. Two ladies in particular were keen to assist and became central to the resource. They are Paula and Una who christened the resource “Happy Bones”.
Left to Right: Paula Carroll and Una Hennessy
Happy Bones incorporates a website, a booklet for carers and a leaflet for service users. The website, which includes two short films starring Paula, Una and their colleagues, is very much a living and growing resource. The booklet, which is intended for families and carers, is colourful and easy to understand. The leaflet, aimed at service users, stresses that strong bones are happy bones and Paula demonstrates how easy having a DXA scan can be.
Recognising the need for people with ID to have baseline bone screening with follow up management is very much in its infancy, but Happy Bones provides a platform to grow and build from and hopefully it will mature into a national campaign.