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Journal of Intellectual and Developmental Disability

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Health service experiences to address mobility decline

in ambulant adults ageing with cerebral palsy
a b c
Prue Morgan , Dina Pogrebnoy & Rachael McDonald
a
Department of Physiotherapy, Monash University, Victoria, Australia
b
Clinical Research Centre for Movement Disorders and Gait, Kingston Centre, Monash
Health, Victoria, Australia
c
Department of Occupational Therapy, Monash University, Victoria, Australia
Published online: 20 Jun 2014.

To cite this article: Prue Morgan, Dina Pogrebnoy & Rachael McDonald (2014) Health service experiences to address mobility
decline in ambulant adults ageing with cerebral palsy, Journal of Intellectual and Developmental Disability, 39:3, 282-289,
DOI: 10.3109/13668250.2014.927841

To link to this article: http://dx.doi.org/10.3109/13668250.2014.927841

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 Journal of Intellectual & Developmental Disability, 2014
Vol. 39, No. 3, 282–289, http://dx.doi.org/10.3109/13668250.2014.927841

ORIGINAL ARTICLE

Health service experiences to address mobility decline in ambulant

adults ageing with cerebral palsy†

PRUE MORGAN1, DINA POGREBNOY2 & RACHAEL MCDONALD3

1
Department of Physiotherapy, Monash University, Victoria, Australia, 2Clinical Research Centre for Movement Disorders and
Gait, Kingston Centre, Monash Health, Victoria, Australia, and 3Department of Occupational Therapy, Monash University,
Victoria, Australia
Downloaded by [University of Connecticut] at 05:57 11 October 2014

Abstract
Background Adults ageing with a disability need lifelong access to health services to meet their changing needs. This study
aimed to explore in depth the experience and impact of health service access to address mobility change in adults ageing
with cerebral palsy (CP).
Method Semistructured interviews were conducted. Qualitative analysis and identification of themes were undertaken on
resultant transcripts.
Results Six community-living adults (35–52 years) with CP, at levels II and III of the Gross Motor Function Classification
System – Extended & Revised (GMFCS-E&R), participated. All described adult-onset mobility decline and had
experienced recent falls. Emergent themes explored the accessibility, nature, and type of health service available,
comparisons to paediatric experience, and themes related to frustration, perceived control, and self-advocacy.
Conclusion Adults with CP report variability in the access to and matching of health service provided with self-perceptions of
service type and need to address mobility decline. Adults with CP describe frustration regarding their experiences and may
seek opportunities to increase self-advocacy regarding available health and support services.

Keywords: cerebral palsy, health services, adults, mobility

Introduction consistent with an emerging emphasis within the dis-

Following improvements in neonatal and childhood
health care, the life expectancy for persons with cer-
ebral palsy (CP) has increased over the past few
decades and is close to that of the unaffected popu-
lation for well-functioning adults with CP (Strauss,
Ojdana, Shavelle, & Rosenbloom, 2004). However,
evidence suggests that many adults with CP, having
been ambulant as children, will experience loss of
functional ability earlier than persons who are able
bodied. A research priority within the CP community
is to better understand and minimise secondary car-
diometabolic and functional complications in
adults, such as mobility deterioration, over time
(Peterson, Gordon, & Hurvitz, 2013; Svien,
Berg, & Stephenson, 2008). This direction is
ability field to better understand the challenges facing
individuals with disability as they age (Svien et al.,
2008).
Adults with disability, such as CP, need lifelong
access to health services to meet their changing
needs (Field, Scheinberg, & Cruickshank, 2010).
The literature has described the optimal design of
transition services to provide adult health care for
adolescents and young adults with disability, such
as adequate preparation, flexible timing, care
coordination, transition clinic visits, and interested
adult-centred healthcare providers (Binks, Barden,
Burke, & Young, 2007). The importance of an
adult system that includes multidisciplinary teams
that are central to the care of people with CP is also
stressed (Bakheit et al., 2009; Field et al., 2010).

†
This manuscript was accepted under the Editorship of Susan Balandin.
Correspondence: Prue Morgan, Department of Physiotherapy, Monash University, PO Box 527, Frankston, Vic. 3199, Australia. E-mail: prue.morgan@
monash.edu

© 2014 Australasian Society for Intellectual Disability, Inc.

 Health service experiences of mobility decline in ageing adults with CP
Despite this knowledge, specialised health services
for adults with CP are widely reported to be extre-
mely limited (Bent et al., 2002; Field et al., 2010;
Ng, Dinesh, Tay, & Lee, 2003) and, regardless of
an increase in funding of transition services (Field
et al., 2010), remain fragmented and challenging to
navigate.
Effective service development for health promotion
for adults with CP requires a detailed knowledge of the
likely health issues experienced by this population and
a robust evidence base upon which to base recommen-
dations and management. Researchers have begun to
explore the topic of mobility decline in adults, with a
recent systematic review synthesising quantitative
information regarding the nature and extent of mobi-
lity changes in adults ageing with CP (Morgan &
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McGinley, 2014), and the consequences of any
decline (Morgan & McGinley, 2013; Opheim,
Jahnsen, Olsson, & Stanghelle, 2012). We now know
that around 25% of adults with CP who are ambulant
will experience accelerated age-related changes in
mobility (Morgan & McGinley, 2014), with 40–60%
experiencing falls (Hsieh, Heller, & Miller, 2001;
Morgan & McGinley, 2013; Mosqueda, 2004;
Opheim et al., 2012), and most describing at least a
moderate fear of falling (Opheim et al., 2012).
Adults with CP have expressed concern regarding
the increasing impact of limited mobility and falls on
participation (Furukawa, Iwatsuki, Nishiyama, Nii,
& Uchida, 2001; Goodwin & Compton, 2004), as
well as the challenges in seeking appropriate services
to meet their health needs (Bent et al., 2002), and
seek to become better informed about their health to
enhance decision-making (Horsman, Suto,
Dudgeon, & Harris, 2010).
This study aimed to explore in depth the lived
experience of adults with CP seeking health services
for their mobility decline and broader health issues
in order to give further and deeper knowledge for
service providers offering health interventions for
this population.
Method
Ethical approval for the study was gained from
Monash University, Victoria, Australia, and associ-
ated facilities (MUHREC - LR - 2011001612).
Adults living in the community with CP, of any
subtype, aged 35–65 years, at Gross Motor Function
Classification System – Extended and Revised Level
I–III (GMFCS-E&R; Palisano, Rosenbaum, Bar-
tlett, & Livingston, 2007), were invited to participate
through advertisements placed at physiotherapy
clinics, health facilities, and community agencies.
Those interested in participating made contact with
283
the researcher (via email or phone) and, after con-
firming inclusion criteria and an interview appoint-
ment time, a consent form was forwarded that
requested signed permission for participation and
for the interview to be taped and transcribed verba-
tim. Participants were excluded if cognitive impair-
ment precluded the ability to participate in a
conversation and provide informed consent. The
interviewer had no treatment connections with the
participants.
The interview was semistructured, lasted for up to
60 minutes, and took place in a mutually convenient
location. Rest breaks and refreshments were offered if
requested. The interview explored the following
topics:
(1) Experiences in adult health services sought to
address any mobility changes and broader
health issues.
(2) Suitability of health services accessed.
(3) Barriers and facilitators to health service
access.
(4) Perceptions of efficacy of any strategies/inter-
ventions offered to address mobility and
balance changes.
Audiotaped data was transcribed verbatim. To
ensure accuracy, audiotapes were reviewed by the
research assistant, compared to the written tran-
scripts, and edited as needed. Audiotaped transcrip-
tion was then checked by a second researcher.
Analysis
Analysis of data was conducted using thematic analy-
sis, with provisional thematic coding undertaken fol-
lowing every two participants. The emergent themes
were then used to provide coding categories to guide
a more in-depth analysis (Pope, Ziebland, & Mays,
2000). Coding of all transcripts into themes was
undertaken independently by the two researchers
(the first and second authors). Following this, any
discrepancies in themes were resolved by discussion.
Data was concurrently reviewed to determine if and
when data saturation arose, with saturation after pre-
liminary thematic analysis of the participants’ tran-
scripts determined by the research team. The final
analysis revealed several consistent themes and key
issues that shed light on the lived experience of
health service access for adults ageing with CP.
Results
Six adults with CP participated (M age 45.8 years,
range: 35–52 years), with gross motor function
 284 P. Morgan et al.
described as GMFCS-E&R Level II for three partici-
pants, and as GMFCS-E&R Level III for the remain-
ing three participants. Five of the six participants
were female, five lived with others, and three were
employed (two full-time, one part-time).
All participants reported being previously involved
extensively with paediatric health services, with con-
siderable focus on optimising mobility throughout
their childhood. All participants described some
experience of mobility decline since reaching adult-
hood, and all reported at least one fall in the past
year. A range of themes emerged regarding their
experiences seeking appropriate health services to
meet their mobility and functional needs. Themes
that emerged were the accessibility, nature, and
type of health service available, and themes related
Downloaded by [University of Connecticut] at 05:57 11 October 2014
to frustration, perceived control, and self-advocacy.
Experiences with health services
Participants accessed health services for a range of
needs—from an annual general practitioner (GP)
visit “to sign off on a disability sticker” (Participant
5), to more serious or regular healthcare needs.
However, for many, the health service accessed was
unsatisfactory due to perceived inadequate expertise
and knowledge of those providing the service. For
some, this resulted in an inappropriate or inadequate
treatment. For example:
I was in pain and there was just nowhere I could go
and nothing I could do to address it. The only thing
that was really on offer for me was painkillers and
that was completely inappropriate for what my
needs were. (Participant 3)
For others, it resulted in a lack of engagement with
the service due to perceptions of insufficient skills:
“to tell you the truth, I can’t be bothered telling my
whole life story to someone who doesn’t have the
skills to help me” (Participant 6), or “it is tiring and
somewhat frustrating having to tell my whole life
story to physiotherapists who I don’t feel have the
training to be able to help individuals like me” (Par-
ticipant 5). Alternatively, although satisfied with res-
olution for one health need, some were aware of the
limitations of their health provider’s skill set: “my
physio has been fantastic for my back pain, it is
much better now but she says that she doesn’t
know enough about CP to be able to help me
further” (Participant 6).
After many years of continuity and the establish-
ment of trusted and informed relationships with pae-
diatric clinicians, several participants had concerns
regarding the lack of continuity with the adult
health service provider, and the extended time
required to establish a therapeutic relationship,
which negatively impacted on time available for
treatment:
The physiotherapists change a lot, and you might get
a couple of months with one physiotherapist, and
then you have to start with another. And that means
you’re constantly going over your story, so that each
of these physiotherapists can get a handle on where
you’re at. … They can only see you for a short
period of time, because their services are in such
demand, I feel that you’re wasting a lot of time,
having to go continually over your story, because
that’s one session gone. (Participant 1)
It takes a while when you have a disability because
they have to get to know the person and the disability
and how the disability affects your life. So it’s not
simple and it will take him [GP] a while to figure
out what he should do and how he should do it.
(Participant 4)
Participants also described feeling “abandoned” by
the health service since becoming an adult: “And
people seem to forget that … kids grow up and they
become adolescents and they become adults. Just
because they become adults doesn’t mean their con-
dition goes away, it’s still there” (Participant 5).
Suitability of available health services
There was variability in the matching of health service
provided with self-perceptions of service need. Par-
ticipants commented on a perceived lack of suitability
of what was offered in general by the service: “Unfor-
tunately community-based services are not well set
up to effectively treat people with a neurological con-
dition” (Participant 1). Some felt that the specific
treatment proposed was not appropriate for their
overall condition and needs:
I know what it’s like to be singled out, I know what it’s
like to be stared at, commented on, there’s no way I
was joining a mainstream Pilates program where it
can be potentially quite competitive almost. There
was just no way. I didn’t have confidence in my
own ability. (Participant 3)
Even where an exercise program was offered to
participants, many struggled to adhere to the require-
ments of the program, which was prescribed to be
either independently completed or carer-assisted:
I found it difficult to keep the program up on my own.
I would have been more successful had I been
involved in a structured program where I have to
 Health service experiences of mobility decline in ageing adults with CP
attend weekly—this way I have a commitment
and there is a greater chance I would get it done.
(Participant 1)
There was an exercise regime every day and they
[carers] were supposed to do it but it wasn’t like
they were all trained in it, but if there wasn’t time or
if they didn’t want to or I wasn’t motivated enough
then it wouldn’t happen. (Participant 4)
Health service costs and transport
One of the biggest concerns expressed by participants
related to the cost and transport associated with
accessing the health service, with many struggling
to afford the fees and be able to organise regular
Downloaded by [University of Connecticut] at 05:57 11 October 2014
and reliable transport. Underpinning this was a
sense of frustration when established arrangements
were altered, and the constant effort associated with
engaging in health promoting activities:
So what I’m finding frustrating is … I said I wanted to
go to Hydro, because Hydro helps with pain and so
forth. I got to go twice, and the physiotherapist said
“oh, you’re so self-sufficient. You don’t need to
come anymore. You can just go off and do it your-
self.” And I really liked going to the group, because
it was a set time, and I could book a taxi at that
time, and once it’s booked in, you know they’re
going to come and get you, and take you back. (Par-
ticipant 1)
I mean if someone tells me something, then I’ll do it,
but I’ve got to be able to afford it and I’ve got to be
able to get there, and then have the energy to get
there and then take off or put on whatever they
want to do and do whatever they say and then get
home again and survive. (Participant 4)
Other participants reported difficulties with the
physical access of the facility due to inaccessible car
parking locations, stair access, or inability to navigate
the narrow passageways and doorways: “People with
disabilities can’t go to a gym generally because they
either can’t get there, can’t get in the door … ”
(Participant 2).
Frustration
Several participants described their frustration
(leading to fatigue) with repeated efforts to seek
appropriate and timely health services: “It seems as
though they put all this effort into children with CP
and then give up on us when we become adults!”
(Participant 6) and “I was really frustrated with
what was available to me” (Participant 3).
285
Furthermore, a sense of fatigue was reported by
those who experienced chronic frustration in strug-
gling to access appropriate services and “battle”
against ongoing unsatisfactory health service offer-
ings to address their mobility decline:
I assume that being a person without a disability in life
you don’t have to fight quite as hard and I think that
you get tired because it’s an ongoing battle and you
just go “this is not your life, it’s not everybody’s life
so if it’s not everybody’s life then why do we have to
do it so hard?” (Participant 4)
Perceived control
Maintaining control of their independence and
control of any service or therapy provided was
highly valued by participants: “I was offered a carer
who was going to come in and help me with my
shower and stuff; however, they could only come
for six weeks—what’s the point of that? I said no
thanks … ” (Participant 2), and “I had always
resisted using anything to help my walking. … I
wanted to be the one to make a decision about
what I used and when” (Participant 6). Where
useful health information was provided, it enabled
participants to exert more control over health
choices:
It just meant so much that somebody for the first time
ever [said]: “You might be in your mid 40s, but we
can make this ageing process a whole lot less scary
for you and you can actually get a little bit more
control back into your life because you can achieve
this, this and this.” (Participant 3)
Where services were provided and unwanted, were
unreliable, or failed to meet a perceived need, this
resulted in dissatisfaction:
I have a cleaner coming in now and it was suggested
as a good idea but it was more or less pushed on to
me … You’ll hear some people saying “oh I hate to
do the housework” and I’ve said to people “I love
doing housework because I can do it.” And for
them to take it away from me, I really got my nose
out of joint at one stage and thought “what are they
doing here?” (Participant 2)
Do you sometimes feel you don’t have a voice in
terms of what happens to you? (Interviewer)
Very much so. (Participant 2)
They made me have one of those monitors where you
push the button and say “you’re ok” everyday, that
sort of crap. (Participant 4)
 286 P. Morgan et al.
The need for self-advocacy
Participants described an ongoing need for self-
advocacy to optimise health service access, type,
and delivery:
But what’s urgent to you and what’s urgent to them
often don’t meet. So you have to fight, fight, fight.
(Participant 4)
Because a lot of physiotherapists don’t actually think
that somebody with mild CP is worth their time,
that’s the reality. There’s so much about our con-
dition that it’s like “why bother, they’re up on their
feet, they’ve got a job, they’re contributing, they’re
paying taxes.” (Participant 3)
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For some participants, the need for self-advocacy
arose out of frustration about not being heard by
their family/carers or specialists in the past regarding
their health issues:
Unfortunately they did not feel I needed one [knee
brace] at the time but now the knee problems I have
cannot be fixed and I wonder if I had been listened
to back then whether I would be having these
issues. (Participant 2)
I saw a doctor at my local medical centre and I ended
up over a course of 18 months having four separate
x-rays to work out what was going on. This was a
very frustrating and difficult time especially because
in the end I was just offered pain relief which I did
not want. (Participant 3)
The need to take ownership for wellbeing
Most participants were prepared and willing to take
ownership for their own health and wellbeing. They
recognised the need to be independent in seeking sol-
utions to their health problems, such as mobility
decline, pain, and falls, as few had close relationships
with health practitioners who were able to provide a
comprehensive health plan for them. One participant
spoke of needing to keep abreast of current research
in the field: “I found I had to learn a lot myself and
now feel like I know enough. I do my own research
as well” (Participant 5).
Furthermore, in the absence of readily accessible
“expert” practitioners, participants recognised the
need to explore solutions to issues that were affecting
their wellbeing, such as weight management and
mental health: “I feel that if I did lose weight, then
I would benefit health wise, pain wise, movement
wise—I guess I will need to sort it out myself”
(Participant 1).
Suggestions to address health service needs
Many participants had suggestions regarding poss-
ible improvements in adult health services that
would better suit the needs of adults with CP.
They were advocating for an equivalent service to
one they recalled accessing as children, which was
publicly funded and staffed with highly skilled multi-
disciplinary clinicians, but one that was aligned with
a more collaborative or partnership model of habili-
tation. Participants believed that greater access to
such services would allow them to address the
complex age-related changes that they were experi-
encing. They were seeking a service that would
allow them access to expert practitioners who were
familiar with them and their current or anticipated
needs:
I believe whole-heartedly that if I had access to the full
services, as far as allied health goes, that my mobility
… I would be in a better state, as far as my mobility
goes. (Participant 1)
I think there should be some sort of specialist that
specialises in adult CP, because there isn’t. And if
there is then they are hiding in the corner and
people can’t afford them or people don’t know they
are out there or something because I have a number
of friends like me who say “I wish there was
someone who can help us in our older age, work
out what’s happening to our body or what’s going
to happen or whatever,” because we all know we are
going to age faster than the average bear and all that
stuff and probably die earlier and have different
issues earlier but if you know about it and you have
no one to help you other than a GP who is just a
basic GP without any disrespect, you’re not going
to be able to help yourself very well. That’s my
belief anyway. (Participant 4)
Discussion
This study provides a snapshot of the lived experi-
ences of adults with CP who were ambulant regard-
ing adult health services to address their mobility
decline and broader health needs. It highlights
many of the current limitations and challenges with
public health services for people ageing with
disability.
Much has been written about optimising the tran-
sition of adolescents with chronic disability to adult
healthcare services, and recommendations regarding
the ideal model for that transition (Binks et al.,
2007). Although there are now a limited number of
transition programs available in Australia and other
countries for young adults with chronic disability
 Health service experiences of mobility decline in ageing adults with CP
(Collis, Finger, Okerstrom, & Owens, 2008), these
were developed in the last five or so years and
hence are not accessed by or readily available to
adults with disability over the age of 30. The health-
care services that are publicly accessible to most
adults with a chronic disability over the age of 30
are frequently limited in scope, or perceived by
users as inadequate. The participants in this study
described their frustration with service type and avail-
ability, facility access, staff knowledge and skills, staff
turnover, and lack of engagement with their needs.
Several participants described their dissatisfaction
with the knowledge base of medical staff and allied
health therapists providing healthcare services. The
knowledge gap of health practitioners within the
field of disability has been recognised by those teach-
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ing in universities and attempted to be addressed
with the development of innovative models of inter-
professional curriculum. For example, guest
“tutors” with disability (Tracy & Graves, 1996),
“real-life” DVD scenarios (Iacono et al., 2011), and
semester-long integrated programs of content
(Morgan & Lo, 2013) have been trialled in a range
of health professional training programs. However,
targeted employment opportunities with structured
mentoring and skill development within the disability
sector remain limited, resulting in some generic
health practitioners providing services for adults
with CP (Bent et al., 2002; Ng et al., 2003; Nieuwen-
huijsen et al., 2008). With an attempt to increase
access by driving disability services into “community
accessible models” (such as physiotherapists within
the community health sector), the development of
experience and expertise in adult developmental dis-
ability by health practitioners has been limited. For
example, whereas a paediatric physiotherapist may
have an exclusive caseload of children with CP with
mentoring and advice readily available from thera-
pists within a specialist tertiary paediatric hospital, a
physiotherapist working in a community health
centre may provide services to a wide variety of
adults, ranging from those post-hip fracture, to
older adults post-fall, to those recovering from
stroke, and may only see a few adults with CP each
year. It is unclear to adults with CP and the wider
health practitioner community who the “experts”
are and hence from whom they can seek advice.
Health services for adults with developmental dis-
ability may be provided in an ad hoc manner by
many different organisations, each with their own cri-
teria for defining who receives health services and
support and the nature of any services and support
provided. Participants in this study spoke of seeking
services from private physiotherapists, counsellors
and massage therapists, community rehabilitation
287
services, GPs, “aged care packages,” personal
carers, council home help, and community gymna-
siums, and aquatic and exercise groups. Anecdotally,
young and middle-aged adults with CP may be
referred to “geriatric” (> 65 years) services, such as
falls and balance clinics, as their local doctor cannot
identify where alternative suitable services may be
located. As a result, overall care is often fragmented
and does not address the psychosocial issues of dis-
ability as well as physical aspects with any continuity.
Furthermore, the knowledge base of practitioners
within these services may not extend to knowledge
of ageing consequences of those with CP or similar
developmental disability. Horsman et al. (2010)
reported that decisions regarding allocation of
health and support services to those living with dis-
ability are flawed; as such, decisions are viewed
from an exclusively medical model rather than a par-
ticipation model. For example, most self-assessments
by adults with disability identified taking part in
leisure activities as a priority (participation model),
whereas most social service agency assessments con-
sidered only basic health needs (medical model)
when determining eligibility for hired caregivers
(Horsman et al., 2010). This concern was echoed
by participants in this study, with recipients being
provided with unwanted or unsuitable health and
support services. It is essential that the person with
disability has a voice in identifying their own needs,
and that their voice is listened to.
Participants in this study expressed their frustra-
tion regarding practicalities of access to health ser-
vices from a transport perspective. Access to
affordable and convenient transport continues to be
a barrier for many adults with disability. There have
been significant improvements in Australia regarding
access to public transport since the Commonwealth
Disability Discrimination Act 1992 (Australian Gov-
ernment, 1992) was enacted, and an increase in the
number and affordability of taxis in response to
user group feedback. However, access to health ser-
vices remains limited and challenging for all those
with disability. Further barriers were imposed on par-
ticipants in this study by the physical limitations of
the venue. It is disappointing that despite widely pub-
lished and available recommendations regarding uni-
versal design principles (Bringolf, 2010), community
facilities are still not accessible by people of all levels
of physical ability.
Many participants described the need for personal
advocacy and resilience and “fight, fight, fight” to
secure appropriate and timely services to meet their
needs. The eventual fatigue from constantly battling
against a “system” reportedly takes its toll. Adults
with CP have been reported as experiencing life as
 288 P. Morgan et al.
less manageable, less meaningful, and especially
unpredictable and incomprehensible (Jahnsen,
Villien, & Stanghelle, 2002). Similarly, Sandström
(2007) previously described adults with CP as report-
ing “strategies to fight” as a solution to a problem.
Adults ageing with a developmental disability need
advocacy and assistance in accessing appropriate
services, whether their need be physical or
psychological.
In contrast to paediatric services, it is apparent that
the current healthcare system does not provide for
seamless access to health services for adults with dis-
ability. Reddihough et al. (2013) are hopeful that the
introduction of a National Disability Insurance
Scheme in Australia will assist in improving the phys-
ical and social outcomes of adults with CP. Consider-
Downloaded by [University of Connecticut] at 05:57 11 October 2014
ation of health service access and type is a
requirement of any new publicly funded model. In
addition, it is apparent that there is some evidence
of an insufficiently skilled health workforce providing
services to adults with CP. Health practitioners
urgently require upskilling to be able to deliver evi-
dence-based interventions, particularly for adults
with CP experiencing mobility decline across their
lifespan.
It is acknowledged that the views of participants
expressed in this study may overrepresent concerns
of the wider population of adults with CP who are
ambulant, and be biased toward females’ perceptions.
Adults with CP possibly participated in this study as
mobility decline and service access and provision
had been an area of identified concern. Although rep-
resentation was sought from metropolitan and rural
locations, the findings should be cautiously inter-
preted within the context of the existing health
system. Our findings may have limited application to
those who have not experienced mobility decline or
those who are more mobile (i.e., GMFCS-E&R
Level I). Furthermore, the findings may not be appli-
cable to young adults with CP (under 30 years old),
and accuracy of recall regarding childhood experi-
ences may be limited. There have been some recent
innovations in health service provision, such as the
establishment of transition clinics at selected major
metropolitan hospitals that may have remedied some
challenges associated with therapy and health service
access for this younger group.
Conclusion
Adults with CP who are ambulant have ongoing
health needs to address age-related changes associ-
ated with their disability. Despite a growing body of
evidence describing persistent unmet health needs
experienced by adults with CP (Ng et al., 2003;
Nieuwenhuijsen et al., 2008; Reddihough et al.,
2013), adults with CP continue to report frustration
with service type and availability, facility access,
staff knowledge and skills, staff turnover, and lack
of engagement with their needs. Adults with CP
need to have a voice in determining a suitable
model of accessible, equitable, and effective health
care to meet their needs. Urgent attention to remedy-
ing this situation is required.
Acknowledgements
Thanks to research assistant, Stuart Howard, for
completing interviews and performing initial tran-
scription. This project was funded by a Monash Uni-
versity Peninsula Campus Grant.
Conflicts of interest: No conflict of interest is
declared.
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