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A qualitative exploration of barriers and enablers of healthy lifestyle

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DOI: 10.1080/23297018.2018.1550727

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 Research and Practice in Intellectual and Developmental
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ISSN: 2329-7018 (Print) 2329-7026 (Online) Journal homepage: https://www.tandfonline.com/loi/rpid20

A qualitative exploration of barriers and enablers

of healthy lifestyle engagement for older
Australians with intellectual disabilities

Carmela Salomon, Erin Whittle, Jessica Bellamy, Elizabeth Evans, Scott

Teasdale, Katherine Samaras, Philip B. Ward, Michelle Hsu & Julian Trollor

To cite this article: Carmela Salomon, Erin Whittle, Jessica Bellamy, Elizabeth Evans, Scott
Teasdale, Katherine Samaras, Philip B. Ward, Michelle Hsu & Julian Trollor (2019): A qualitative
exploration of barriers and enablers of healthy lifestyle engagement for older Australians with
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RESEARCH AND PRACTICE IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
https://doi.org/10.1080/23297018.2018.1550727

A qualitative exploration of barriers and enablers of

healthy lifestyle engagement for older Australians with
intellectual disabilities
Carmela Salomona, Erin Whittlea, Jessica Bellamya,b, Elizabeth Evansa, Scott
Teasdalec,d, Katherine Samarase,f, Philip B. Wardd,g, Michelle Hsuh and
Julian Trollora
a
Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney,
Australia; bDepartment of Exercise Physiology, University of New South Wales, Sydney, Australia;
c
South Eastern Sydney Local Health District, Keeping the Body in Mind Program, Bondi, Sydney,
NSW, Australia; dSchool of Psychiatry, University of New South Wales, Sydney, Australia;
e
Department of Endocrinology, St Vincent’s Hospital, Darlinghurst, Australia; fDiabetes and
Metabolism Division, Garvan Institute of Medical Research, Darlinghurst, Australia; gSchizophrenia
Research Unit, Ingham Institute of Applied Medical Research, Liverpool, Australia; hThe Boden
Institute of Obesity, Nutrition, Exercise & Eating Disorders, University of Sydney,
Camperdown, Australia

ABSTRACT ARTICLE HISTORY

Older Australians with intellectual disabilities experience high rates Accepted 9 November 2018
of lifestyle-related illness, yet generally have poor diets and partici-
pate in limited physical activity. Eliciting the perspectives of people KEYWORD
with intellectual disabilities and support workers may inform inter- Intellectual disability;
barriers and enablers;
ventions to support healthy lifestyles. A semi-structured focus group ageing; nutrition; physical
question framework was developed to investigate participants’ activity; focus group;
experiences of barriers and enablers of physical activity and healthy health; lifestyle
eating. Data from focus groups with paid support workers (n ¼ 6)
and people with intellectual disabilities (n ¼ 8) aged 60 þ years were
analysed within this framework. Similarities and differences between
perspectives were explored. Both groups perceived decreased physi-
cal activity as an inevitable aspect of ageing. Health problems and
environmental constraints were also identified. Embedding physical
activity into daily routines, providing choices, and viewing exercise
as beneficial, were highlighted as enablers across groups. Support
workers, but not people with intellectual disabilities, identified bar-
riers to healthy eating including use of “junk” food to manage
behaviour and lack of message consistency between care providers.
Financial and human resource barriers were also highlighted by sup-
port workers. Both carers and people with intellectual disabilities
may benefit from specialised support to adapt healthy lifestyle inter-
ventions for people as they age. Behavioural management strategies
unrelated to food should be promoted. Organisational and policy-
level commitment are needed to ensure that healthy lifestyle pro-
grams are adequately resourced to meet the needs of the ageing
population with intellectual disabilities.

CONTACT Julian Trollor j.trollor@unsw.edu.au

ß 2019 Australasian Society for Intellectual Disability
2 C. SALOMON ET AL.

Across the lifespan, people with intellectual disabilities experience disproportionally

high rates of lifestyle-related morbidity and mortality (Emerson & Hatton, 2007).
Despite medical and social advances, this population continues to experience chal-
lenges accessing preventative healthcare (Williamson, Contreras, Rodriguez, Smith, &
Perkins, 2017), and higher mortality from modifiable lifestyle-related diseases
(Trollor, Srasuebkul, Xu, & Howlett, 2017). Compared to the general population,
adults with intellectual disabilities are at higher cardio-metabolic risk through obesity,
physical inactivity, a sedentary lifestyle, and poor diet (Dixon-Ibarra, Lee, & Dugala,
2013; Nordstrøm, Paus, Andersen, & Kolset, 2015).
Despite this risk profile, people with intellectual disabilities rarely participate in
interventions to support a healthy lifestyle (Dixon-Ibarra et al., 2013; van Schijndel-
Speet, Evenhuis, van Wijck, van Empelen, & Echteld, 2014). Multiple personal, envi-
ronmental, and resource-related barriers contribute to this, including: insufficient pro-
gram resourcing, stigma, inaccessibility, and low client motivation (Heller, Hsieh, &
Rimmer, 2003; Mahy, Shields, Taylor, & Dodd, 2010; Temple & Walkley, 2007; see
Bodde & Seo, 2009, for a systematic review).
Despite the increasing life expectancy of people with intellectual disabilities, little is
known about how ageing impacts on their lifestyle. Qualitative research exploring this
topic is particularly lacking (Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Stanish,
Temple, & Frey, 2006). One notable exception to this was the study by van Schijndel-
Speet et al. (2014) that elicited perspectives of older people with intellectual disabil-
ities to identify individual, environmental, and resource-related barriers to a healthy
lifestyle. Study authors recommended including carers’ perspectives in future research
to improve topical insight.
Identifying barriers and enablers is a core component to changing health-related
behaviours (Michie et al., 2005). This study explored barriers and enablers of healthy
eating and physical activity, and the impact of ageing on physical activity and eating
practices from the perspectives of older people with intellectual disabilities and their
paid support workers. Findings will inform the design of an Australian pilot interven-
tion, “Get Healthy!”, which will be coordinated at the University of New South Wales
in Australia, by the Department of Developmental Disability Neuropsychiatry. The
program will provide tailored physical activity and healthy eating support to older
adults (40þ years) with mild–moderate intellectual disabilities (see Salomon et al.,
2018, for a full program description).

Method
This focus group study sought qualitative data about pre-defined healthy lifestyle
issues, namely: barriers and enablers of healthy eating and physical activity, and the
impact of ageing on physical activity and eating practices. A semi-structured inter-
view schedule was developed to generate discussion about these topics with a view to
ensuring stakeholder experiences were embedded in the design and delivery of the
“Get Healthy!” program.
Participants were recruited from a large metropolitan disability support service in
New South Wales. Fourteen people participated in the study: 8 were people with
 RESEARCH AND PRACTICE IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 3

mild–moderate intellectual disabilities (7 males, 1 female) aged over 60 years, living in

a variety of settings including: disability group homes, with family, nursing homes,
and independently. The remaining 6 participants were paid support workers (all
female) aged over 21 years. All currently provided support to people with mild–mo-
derate intellectual disabilities across day program and residential service settings.
Three focus groups were held: two with people with intellectual disabilities (four
people per group) and one for support workers. All participants were asked about
topics in the pre-developed question framework. Wording and prompts were tailored
to each group’s communication needs. Focus group facilitators all had experience
communicating with people with intellectual disabilities. Focus groups with people
with intellectual disabilities included a paid support worker known to participants,
whose role was limited to facilitating communication where necessary. Ethics appro-
val was obtained prior to commencement from the University of New South Wales
Human Research Ethics Committee (HC1 7022).
Focus groups were recorded, transcribed verbatim and then imported into NVivo
(Mac version 11.0.0). Data were coded thematically within the predefined categories
of: “barriers of physical activity”; “enablers of physical activity”; “barriers of healthy
eating”; and “enablers of healthy eating.” All themes were tagged as being either from
the support worker group, the person with an intellectual disability group, or both.
Commonalities and differences between the two groups were then explored. The first
author conducted the initial thematic analysis. Coding structures were then reviewed
by a further two authors.

Results
Physical activity: barriers
Ageing
Ageing was identified as a key barrier to physical activity by both groups. People with
intellectual disabilities perceived that age invariably led them to cease previously val-
ued activities. One participant reflected: “I used to play cricket and soccer, or play
rugby league, but the years went on and it [exercise] just slowly slipped away.”
Another said he was physically inactive now, “because I’m old.” A third described
how he no longer attends the gym because “I’m not getting any younger.”
Support workers similarly identified that age contributed to decreased “energy levels”
and “mobility.” Support workers perceived decreased physical activity as an inevitable part
of their client’s ageing process: “I reckon they would have done more exercise when they
were younger … because their bodies worked better and as some of these guys have got a
bit older … their bodies don’t quite work as well.” Neither group expressed knowledge or
confidence regarding how activities could be adapted for people as they age.

Health problems
Different types of health problems were perceived across groups as barriers to physical
activity. Chronic diseases, including diabetes, asthma, and epilepsy, were described as
barriers by people with intellectual disabilities: “I have seizures … and this could make
exercise difficult too”; “Steep hills [are hard] sometimes because I get out of breath or,
4 C. SALOMON ET AL.

you know, I also say that diabetes. Sometimes I’m getting out of breath”; “I get asthma
… [so] I stopped walking to work.” Support workers did not mention chronic condi-
tions but instead described factors such as poor concentration and challenging behav-
iours as negatively impacting the person’s ability to take part in physical activity.

Environmental barriers
Both groups identified environmental constraints, such as settings being inaccessible
or lacking inclusiveness, as barriers to physical activity. One participant with an intel-
lectual disability described how he would like to cycle near his house but couldn’t
“because that footpath is really dangerous there.” Other participants viewed the
weather as a barrier to exercising outdoors: “[I don’t like to exercise outdoors
because] winter’s coming, it’s cold or raining”; “[I don’t exercise outside if its] too
hot, too windy.”
The environmental constraints identified by support workers related more to sen-
sory issues, accessibility, and stigma. For example, sensory problems clients faced in
indoor exercise environments were highlighted: “Gyms historically have that boom
boom … loud music”; “the lights [in gyms] are really prominent.” Outdoor exercise
settings were also often noted to be physically inaccessible. Additionally, support
workers described how stigma and lack of inclusiveness in mainstream exercise set-
tings created a hostile social environment for clients with intellectual disabilities:
[Other gym patrons without disabilities would say] “Can they can be quiet? [sic] Can
you not make them be quiet?” … I don’t really feel comfortable supporting you in this
environment … I know you enjoy dancing but the atmosphere in there must be
horrible for you, everyone talking about you.

Resource-related barriers
Support workers, but not people with intellectual disabilities, described how limited
human and financial resources further curtailed engagement in physical activities.
Concerns raised included the high cost of some activities, and difficulty providing
effective individual support to clients with existing staffing ratios:
[One support worker] will be trying to coordinate three people in the gym, one’s going
this way, one’s trying to go up the stairs, one’s on a machine … so it ends up being too
risky to take part in a lot of the activities because we don’t have the correct
support staff.

I mean ideally if they all had one-on-one for their gym time that would be absolutely
amazing, but then it just comes down to funding, some of them do not have funding to
– if they want us to do one-on-one, it potentially reduces their hours of service and
families are like, “Look I work, like they need to be at day care for six hours” – I can’t
change the ratios.

Physical activity: facilitators

Incorporating physical activity into everyday routines
This theme was identified across groups. People with intellectual disabilities described
how they did physical activity as part of their everyday routines: “I walk the dog”;
 RESEARCH AND PRACTICE IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 5

“we go [walk] down the road to get coffee.” Support workers identified how they
deliberately incorporated physical activity into clients’ everyday activities – for exam-
ple, parking in “the furthest car park away” when shopping, or suggesting a walk
around the park as part of a social outing.

Having choices
Both groups identified that people were more likely to exercise if they had freedom
to choose where and when to undertake activities. Some people with intellectual dis-
abilities described preference for either indoor or outdoor activity, or preferred choice
based on weather. Support workers described how “you’ve got a group of people with
all different interests … [so] we’d like to have them one-on-one [so they can have
more choice].”

Rewards
People with intellectual disabilities described both health-related and social rewards as
motivating factors. Health-related rewards included: “it gets your weight off”; “it’s
good for you”; “to make our legs strong”; “you keep fit”; as well as avoiding negative
consequences of not exercising: “[you] get worn out” or “you’re dead.” Social rewards
included finding the activity enjoyable: “I like music and dancing”; and valuing the
social interactions group exercise provided: “Much better [to exercise] with friends”;
“[I like exercising] because we do it together.” Support workers similarly identified
rewards as motivating for their clients: “Probably very similar [as for children] …
we’ll make this [exercise] fun”; “Reward-based [motivation] is huge.”

Healthy eating: barriers

Despite being explicitly asked about this topic, participants with intellectual disabil-
ities did not identify barriers to healthy eating. However, support workers identified a
number of challenges.

Lack of resources
Limited human and educational resources were highlighted as a barrier to providing
healthy eating support: “I mean if you’ve got enough resources that you can do your
[food] education sessions and reinforce them, great. But we’re time poor.”
Additionally, they detailed how inadequate staffing ratios and lack of education con-
tributed to support workers using “junk” food to contain or de-escalate challenging
behaviours: “if somebody’s escalating to the point that they’re about to get aggressive
… [and the support worker is alone, they will say] … do you want a McDonald’s?”
Support workers also highlighted how use of junk food to manage behaviours is com-
mon in family settings:
If they’re having a really bad day [at home], … or a behaviour is starting, I can see it
starting to elevate, if I [family member] just give him his coke now I’m not going to see
the behaviour, so I’m just going to give him a coke.
6 C. SALOMON ET AL.

Poor health literacy and message inconsistency

Support workers identified that inadequate health literacy on the part of either family
members or paid workers could act as a barrier to healthy eating. For example, some-
times clients were provided with incorrect information about healthy eating by staff:
“I think it depends on the staff education about healthy eating as well because some-
times they [staff] think that dieting is just having less food”; and by family: “A lot of
this [unhealthy eating] is learnt and back to I guess to family member [health liter-
acy].” Support workers highlighted how message inconsistency between residential
care and family settings could further undermine attempts to promote healthy eating:
[She’d] come in on a Monday morning with a bag of [chocolate candy] in her bag and
we have given out so much reminders [to not give junk food]. We rang mum, “Why is
there chocolate candy in the bag?” “Oh we had a really hard day yesterday so I just
bought her a bag of chocolate candies” … you can reinforce [healthy eating] all day
can’t you and then you send them home to their family and … it’s all undone again.

Lack of client motivation to choose healthy foods

Support workers identified that at times, even with access to education and consistent
messaging, clients were not motivated to make better food choices:
You can tell me that this [healthy food] will make me live a 100 years and you can tell
me [with this junk food] I’ll only live for another 20 … and they’re like, I’m still going
pick it because McDonald’s has that taste.
Given multiple constraints placed on clients’ life choices, support workers acknowl-
edged that being able to choose junk food was an important act of autonomy for
some: “a lot of their lives are controlled, food is something that they can control
themselves.” However, even among themselves, support workers grappled with bal-
ancing their duty to promote healthy eating against their obligation to respect the cli-
ent’s autonomy. For example, one commented: “When I first came here [to work] I
used to hide the sugar and I was told you weren’t allowed to do that because it’s
restrictive.” To which a second participant responded: “It is [restrictive].” The first
participant disagreed: “No it’s not, it just needs to be hidden [for their health] – that’s
not restrictive.”

Healthy eating: facilitators

Participants with intellectual disabilities identified very few facilitators of healthy eat-
ing. One stated he liked to eat the food he grew in a gardening project. A second
said she ate healthy foods because they are “good for you.” Despite explicit question-
ing, no other participants with intellectual disabilities commented on this topic.
Support workers identified visual teaching aids as a facilitator of healthy eating.

Visual teaching aids

Support workers reported that visual teaching aids and concrete examples could help
people with intellectual disabilities, many of whom struggle with abstract thinking
and memory, to make more informed food choices:
 RESEARCH AND PRACTICE IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 7

What worked for us was a very much hands-on [approach]. We brought the sugar,
packets of sugar in and then we had the choice of [two different types of breakfast
cereal] or whatever and read the “how many sugars in this?” [section] and we filled the
cups up with sugar and we tipped them … and we said, “Anyone want to taste it?”

Discussion
Consistent with previous stakeholder consultations, this study identified individual,
environmental, and resource-related barriers and facilitators of healthy eating and
physical activity. Inappropriate exercise settings and financial constraints have been
described previously (Frey, Buchanan, & Rosser Sandt, 2005; Heller et al., 2003).
Individual challenges such as health problems, lack of motivation, and disability are
likewise consistent with existing literature (Frey et al., 2005; Heller et al., 2003) as are
organisational challenges relating to staffing ratios and carer health literacy (Dixon-
Ibarra, Driver, Vanderbom, & Humphries, 2017; Taliaferro & Hammond, 2016).
Unlike earlier studies that included younger or mixed-age participants, this analysis
is based exclusively on data from older participants. Our finding that ageing was
viewed as a barrier to physical activity is consistent with limited prior research
(Dixon-Ibarra et al., 2017; van Schijndel-Speet et al., 2014). Both groups conceptual-
ised loss of physical activity as an inevitable part of ageing, as expressed in the com-
ment of one participant with an intellectual disability: “it just slips away.” This
finding is concerning, although perhaps unsurprising, given previous literature linking
ageing to decreased health expectations and cultural notions of decay and loss
(Bigby, 1997; Nelson, 2016). Such pessimistic beliefs may contribute to the finding
that older people with intellectual disabilities are less likely to be physically active
than their younger counterparts (Dixon-Ibarra et al., 2013; Hilgenkamp et al., 2012).
Adaptations to physical activities may be required as people age. However, the lit-
erature is unequivocal that remaining active into older age decreases frailty, promotes
healthy ageing, and reduces the risk of numerous morbidities (Galloway & Jokl,
2000). Therefore, findings from this study highlight a need to address both groups’
pessimistic expectations for ageing (Nelson, 2016). Enhanced education regarding safe
adaptation of physical activities in the context of changing physical abilities, including
referral to suitably qualified allied health professionals, may also support
active ageing.
Another highlighted barrier to remaining healthy was use of junk food for behav-
iour management. This practice may reflect a lack of staff or family knowledge of
alternative behaviour management strategies or inadequate human resources to
implement them, or both. Support workers’ health literacy and capacity to effectively
implement lifestyle interventions are reduced when resource allocation is inadequate.
This finding, highlighted both in our focus groups and multiple previous studies (e.g.,
Frey et al., 2005; Heller et al., 2003), underscores the need for resource commitment
at an organisational and policy level, to ensure that programs will be more than
merely tokenistic.
Support workers in this study struggled to balance their health promotion obliga-
tions against a duty to respect clients’ autonomy, which may include choosing junk
8 C. SALOMON ET AL.

food and inactivity. Previous studies highlight how this tension is particularly acute
when the nature of the intellectual disability may impair or make people’s decision-
making capacity difficult to ascertain (Taliaferro & Hammond, 2016). We recommend
tailored group approaches and making healthier options more appealing to improve
client “buy-in.” Providing support workers with safe spaces to debrief and discuss
role conflicts with peers and mentors could also prove beneficial.
While both groups identified some broadly overlapping themes, their unique per-
spectives on these issues highlights the importance of including both proxy reports
and first-person perspectives during stakeholder consultations. Participants with intel-
lectual disabilities in this study did not comment on barriers or facilitators of healthy
eating, in contrast to other studies that elicited first-person perspectives on this topic.
One possible explanation is that this relates to the life circumstances of our partici-
pants, such as a lack of involvement in food choice and preparation. However,
another potential reason is participant fatigue, since questions about eating were
towards the end of the focus groups.
Focus group findings will help to inform the design of the “Get Healthy!” program.
Namely, results have highlighted a need to ensure the pilot program:

 Receives adequate human and financial resources

 Provides explicit education about the importance of remaining physically active
into older age, and demonstrates safe adaptation of exercises for less
mobile clients
 Addresses the use of junk food for behaviour management, and supports carers to
identify alternative strategies
 Incorporates exercise into daily activities to ensure sustainability post-intervention
 Includes small group sessions to facilitate social rewards and client buy-in
 Offers choices in activities, being sufficiently flexible to meet participants’ interests
 Addresses the health literacy needs of support workers, family carers, and people
with intellectual disabilities to ensure message consistency

Conclusion
The increasing number of people with intellectual disabilities reaching older age high-
lights the importance of focusing resources and research on this population. Diet and
physical activity are two modifiable factors that can significantly impact the health
and wellbeing of this group, and are therefore important targets for change. Focus
groups highlighted a number of personal, environmental, and resource-related factors
that currently impact on the physical activity levels and food choices of older people
with intellectual disabilities. We hope that findings will support future researchers
and allied health and disability service professionals, to more effectively promote
healthy lifestyle change in this underserved population.

Acknowledgements
We would like to thank the New South Wales Department of Family and Community Services
for funding this research under grant RG161748. The funding body has not been involved in
 RESEARCH AND PRACTICE IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 9

designing or analysing the stakeholder consultations. We would also like to thank all partici-
pants for contributing their valuable time and expertise.

Disclosure statement
No potential conflict of interest was reported by the authors.

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