By Mark Wright
A set of guiding principles and priority actions that would go a long way to help people experiencing disabilities to reduce their risk of obesity have been identified through the Living Well Project for Disabled People.
Principal investigator Professor Kathryn McPherson from AUT University says the project, funded by the HRC and Ministry of Health, was designed to identify, in partnership with disabled people, key strategies for reducing the incidence and risk of obesity and associated chronic diseases.
“We are very conscious that despite the huge public health emphasis on activity and well-being and health, none is targeted towards people with impairments, whether that be post-stroke or for people living with cerebral palsy or other disabling condition.”
Previous research indicates that despite the known benefits of say activity, measures taken fail to last, so this was an opportunity for the team at AUT’s Health and Rehabilitation Research Institute to explore what is it that gets in the way of disabled people being active, eating healthily and living well.
“We were interested in engaging with the community to find out not only what are the problems, but what does the community think could be some solutions.”
Professor McPherson says the project began with a review of literature confirming three key components for strategies to reduce obesity and obesity related conditions - healthy eating, activity and behavioural strategies.
“Obesity prevention is just as important, potentially even more so, for disabled people as it is for non-disabled people but early consultation highlighted the problematic nature of such terminology, hence our focus on ‘living well’”, she says.
The team, including community partners and the Donald Beasley Institute, gathered information from about 127 disabled people throughout New Zealand, as well as people working in the sector and family, finding out what they think living well means and what makes it easier and what makes it harder.
Using that information the project team developed several themes, then ran them back past the participants to get feedback. That resulted in six guiding principles to support disabled people to live well.
Guiding Principles:
1. Prioritising living well for disabled people
Developing health and disability policy, structures and processes which prioritise living well for disabled people
2. Making living well a possibility for disabled people
Ensuring the people and environments that surround a disabled person make living well possible
3. Creating living well opportunities for disabled people
Making living well an easier, more visible, cost-effective and convenient option for disabled people
4. Accounting for the individual needs and values of living well to the disabled person in their context
Tailoring services and tapping into the meaning of living well for the individual disabled person in their context
5. Working together to promote living well for disabled people
Crossing the chasm between health and disability sectors and actively involving disabled people in service and policy development
6. Equipping disabled people with the skills to live well
Providing education and information to develop skills, knowledge and confidence to live well.
“The reasoning behind the approach was that because different communities and different populations have different specific needs, by operationalising these principles for your particular population or location, you will be addressing the things our participants highlighted would help,” Professor McPherson explains.
While all six principles are important, she says the first one is fundamental because although health is important to disabled people it is often not prioritised.
“As a non-disabled woman it is almost impossible for me to walk into a GP’s surgery without them offering a smear or referral for a mammogram but disabled women tell us this is not their experience.
“So sometimes health is not seen by non-disabled people as a major issue for disabled people, but it is.”
Co-researcher Dr Suzie Mudge says the people they interviewed gave a number of examples of practical things that would give them greater opportunity to live well.
“Things like online shopping that offers free delivery for disabled people or discounts to gym facilities would make a real difference,” she says.
“It was also about ways to make those places more accessible to people. People with visual impairment gave the example of going to the supermarket and not being able to read nutritional labels.”
One suggestion would be talking scanners or perhaps a personal shopper who can help find items and suggest healthier options.
Co-researcher Dr Nicola Kayes says the project team has also identified a set of five priority actions covering some of the core themes that come through in the guiding principles.
Priority Actions:
1. Policy and process
a. Action One: Institute policy change in both the health and disability sectors to formally and explicitly acknowledge living well for disabled people as a national priority
b. Action Two: Enhance the capacity for disability support funding to accommodate living well activities (e.g. gym membership, carer support to attend community-based facilities, adapted gym equipment)
2. Workforce capacity
a. Action Three: Develop a training package for formal care providers and support workers to enhance their capacity to support disabled people to live well (e.g. cooking a nutritional meal, involving care recipients in menu planning and food shopping, supporting care recipients to participate in physical activity and connect with community-based facilities)
b. Action Four: Develop a toolkit for primary health care professionals to facilitate health care delivery that prioritises and promotes physical activity and nutrition for disabled people
3. Accountability
a. Action Five: Institute strategies and incentives which promote greater accountability for service providers, community-based facilities and retailers to be responsive to disabled people (e.g. resource allocation to further develop and roll out existing initiatives adopted by Halberg Trust [Sports Access awards] and Be.Accessible [Be.Ready Toolkits and Be.Welcome assessments])
“The list of recommendations could have been endless and yet we knew that no matter how many recommendations we put in there we could never provide an exhaustive list because there was always going to be something that we had missed or hadn't considered,” she says.
“That’s where the guiding principles became so important - having these overarching principles that you could draw on.”