Research and Evidence: Support the Need for a Change In this assignment you will find evidence from the literature or research supporting the need for your proposed change project. Find a minimum of three original research articles to support your project. Provide a 350 word summary for each article (a summary of 350 words for each article). Each article must be: Peer reviewed Recent (published within 5 years) Statistically significant Complete the tables from Appendix E: Research Evidence Appraisal Tool and Appendix F: Non-Research Evidence Appraisal Tool from Johns Hopkins Nursing Evidence-Based Practice: Models and Guidelines, and, attach to your paper. You may copy the tables, or, attach your work as a Word document. Include PDFs of the three articles as well as a reference page with an APA-formatted citation for each article. Format your paper consistent with APA guidelines.I have uploaded the articles that you need.
the_use_of_global_positional_satellite_location_in_dementia.pdf
gps_ubiquitous_health_management_system_with_watch_type_dementia.pdf
electronic_spatial_assistance_for_people_with_dementia_gps_device.pdf
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Milne et al. BMC Psychiatry 2014, 14:160
http://www.biomedcentral.com/1471-244X/14/160
RESEARCH ARTICLE
Open Access
The use of global positional satellite location in
dementia: a feasibility study for a randomised
controlled trial
Heather Milne1, Marjon van der Pol2, Lucy McCloughan1, Janet Hanley3,4, Gillian Mead5, John Starr5,
Aziz Sheikh1,6,7 and Brian McKinstry1,3*
Abstract
Background: Getting lost outside is stressful for people with dementia and their caregivers and a leading cause of
long-term institutionalisation. Although Global Positional Satellite (GPS) location has been promoted to facilitate safe
walking, reduce caregivers’ anxiety and enable people with dementia to remain at home, there is little high quality
evidence about its acceptability, effectiveness or cost-effectiveness. This observational study explored the feasibility
of recruiting and retaining participants, and the acceptability of outcome measures, to inform decisions about the
feasibility of a randomised controlled trial (RCT).
Methods: People with dementia who had been provided with GPS devices by local social-care services and their
caregivers were invited to participate in this study. We undertook interviews with people with dementia, caregivers
and professionals to explore the perceived utility and challenges of GPS location, and assessed quality of life (QoL)
and mental health. We piloted three methods of calculating resource use: caregiver diary; bi-monthly telephone
questionnaires; and interrogation of health and social care records. We asked caregivers to estimate the time spent
searching if participants became lost before and whilst using GPS.
Results: Twenty people were offered GPS locations services by social-care services during the 8-month recruitment
period. Of these, 14 agreed to be referred to the research team, 12 of these participated and provided data. Eight
people with dementia and 12 caregivers were interviewed. Most participants and professionals were very positive
about using GPS. Only one person completed a diary. Resource use, anxiety and depression and QoL questionnaires
were considered difficult and were therefore declined by some on follow-up. Social care records were time
consuming to search and contained many omissions. Caregivers estimated that GPS reduced searching time
although the accuracy of this was not objectively verified.
Conclusions: Our data suggest that a RCT will face challenges not least that widespread enthusiasm for GPS
among social-care staff may challenge recruitment and its ready availability may risk contamination of controls.
Potential primary outcomes of a RCT should not rely on caregivers’ recall or questionnaire completion. Time
spent searching (if this could be accurately captured) and days until long-term admission are potentially suitable
outcomes.
Keywords: Dementia, Feasibility study, Global positional satellite location, Wandering
* Correspondence: [email protected]
1
E-Health Group, Centre for Population Health Sciences, The University of
Edinburgh, Telescot, Room 216b, Doorway 3, Medical School Teviot Place,
Edinburgh EH8 9AG, UK
3
The Edinburgh Health Services Research Unit, Edinburgh, UK
Full list of author information is available at the end of the article
© 2014 Milne et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain
Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article,
unless otherwise stated.
Milne et al. BMC Psychiatry 2014, 14:160
http://www.biomedcentral.com/1471-244X/14/160
Background
Approximately 24 million people worldwide are known to
have dementia [1] and many more are undiagnosed [2].
As the population ages, the prevalence is expected to
increase rapidly. Globally, the number of people living
with Alzheimer’s disease (AD), the commonest cause of
dementia will rise to 106 million by 2050 [3]. Most people
with dementia wish to remain at home, and health and social care services encourage this, particularly as long-term
care is an increasingly scarce [4] and expensive [5] resource. A leading reason why people with dementia require long-term care is because of “wandering” i.e. leaving
home without informing a caregiver, or alternatively getting lost while out [6]. About 40% of people with dementia
get lost outside their home at least once [6], and just
under 10% get lost on multiple occasions [7]. Wandering
outside the home puts them at risk of exploitation and accidental injury [8], family members and other caregivers
naturally become anxious spending long periods searching
for them [6] and the police frequently need to be involved
[7]. Often, however, the person does not walk far from
home, may be in familiar territory, can find their way
home and be at relatively low risk. These insights have led
to calls to modify the current policy of restricting external
access through locked doors [9]. Although wandering and
getting lost are a cause of both patient and caregiver stress
[8], this must be balanced against the potential benefits in
terms of physical exercise, social contact, informal supervision by neighbours and local shopkeepers and the perception of autonomy [9,10] afforded by what some social
care organisations have termed “safe walking” [11,12]. Fear
of getting lost is a contributor to the marked reduction in
out-of-home mobility [13] and restricted life space [14]
associated with cognitive impairment [15]).
One possible intervention to support safe walking is
the use of electronic location devices. The Global Positioning System (GPS) navigation is widely used, particularly in cars, and it is now also a common component of
smartphones. In theory these devices enable the exact
co-ordinates (down to a few metres) of a person who
has a GPS receiving device to be detected and forwarded
by GPS mobile phone signal to a central server, which
can then can be superimposed onto an electronic map.
Safe areas and times can be set up which allow the person to move appropriately through familiar areas (e.g. a
bus route or a walk to the local shop), but will set off an
alert if this geo-temporal limit (or “geo-fence”) is breached. Additional services including adding an operator
to phone the person and using GPS to guide them home
have also been described [16]. However, if the person is
out of view of the satellites, (e.g. in cities with high
buildings) the location system is less effective, nor will
it work an area with poor mobile phone coverage (for
example some rural areas).
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Health and social-care professionals, have however
expressed some reservations about the impact on civil
liberties that these devices may have [17], however observational studies suggest that they are popular with
family caregivers [18], and that civil liberty issues do not
seem to be a particular problem particularly with older
carers [19].
Others have suggested that the numbers of people
likely to benefit and take up such a service is small
(around 25% of wandering people), partly because for
some people no degree of unsupervised walking outside
is safe, and that the use of such devices may lead to an
increased risk of accidents [20].
Commercial organisations in several countries now
offer GPS location services. However, our literature
searches identified no systematic evaluation of GPS in
the context of dementia. It is unknown what impact the
use of such devices has on important outcomes such as
the time taken by caregivers to find “lost” people with
dementia, caregiver stress and anxiety, accidents, delay
of admission to long-term care and service resource use
and if the cost of providing such services is likely to be
recouped through resource savings down the line.
These questions need to be answered through a randomised controlled trial (RCT). However, before this could
be carried out, a feasibility study is needed to determine
the:
likely available number of eligible patients, caregivers
or other appropriate participants and the willingness
of participants to be recruited and of social care staff
to identify and recruit participants
perceptions of participants as to what constitutes
problematic wandering behaviour/getting lost, the
perceived utility of GPS location and which types of
people might benefit most from the intervention
rates of retention, compliance, and completion of
study questionnaires
availability, usefulness and limitations of routinely
acquired health service and social care data to assess
outcomes
standard deviation of outcome measures to inform
estimates of sample size for a future trial
time needed to collect and analyse data.
Methods
This was an observational study using mixed methods,
combining data from qualitative interviews and focus
groups with questionnaire and resource use data.
Ethical issues
Ethical approval was obtained from Scotland A National
Health Service (NHS) research ethics committee (11/AL/
0292). People with dementia consented for themselves if
Milne et al. BMC Psychiatry 2014, 14:160
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they had capacity (as assessed by a psychiatrist from the
Scottish Dementia Clinical Research Network), otherwise
consent was sought from the caregiver.
Participants
Caregivers and people with dementia
Participants were recruited by social care collaborators
in Edinburgh, East Lothian and Fife social services.
These regions had recently started routinely providing
GPS to suitable people with dementia.
Inclusion and exclusion criteria
Inclusion criteria: These were decided upon by the local
social care teams. We considered all people with dementia
(of any cause) who met the local criteria for the GPS service and were willing to use it. GPS was provided to them
on the basis that they had a history of “wandering”, were
deemed suitable for current best practice (door alarm,
linked to call centre), had road safety skills and had a caregiver/relative who could charge the battery daily, ensure
the person with dementia carried it and were able to
search for them. We included patients in the study with
all levels of dementia severity providing they met the
above criteria. If, social services staff deemed someone
suitable, and offered a GPS, they then asked permission to
pass the potential participants’ contact details to the
research team. The researcher then provided potential
participants with the details of the study and invited them
to take part.
Exclusion criteria: People were excluded if they were
terminally ill, or had another major psychiatric illness
unrelated to dementia, or if the caregiver was unable to
consent or had no telephone.
Professional stakeholders
We interviewed professional stakeholders (i.e. social
workers, community psychiatric nurses, occupational
therapists, police officers and call centre staff ). Police officers were included due to their key role when a person
with dementia is reported missing. These stakeholders
were identified through social services and professional
networks.
GPS location systems
There was a range of possible devices available that
could be carried in pockets and bags, worn as watches,
or as a pendant. However, the technology in each of the
devices was similar and monitoring while carried out by
different agencies was also similar. The social care providers chose a device from a range of possible devices
that they had previously piloted, and which they considered would suit the individual patient best. Participants
and their family caregivers were given instruction on applying the tracking system by the social care partners.
Page 3 of 13
“Geo-fences” were established in agreement with the
person with dementia and their caregivers. They varied
from a very wide area for a man who was a keen walker
and for another participant who had a defined bus route,
to the immediate environment of the family home in
one case where the family did not trust the system and
used it as a back-up to locked door. If the person with
dementia was reported lost or had breached their ‘geofence’, the monitoring agency could inform the caregiver
of their last known whereabouts detected by GPS and
continue to inform them as needed if the person was
moving. Caregivers could also track users on their computer, tablet and mobile phone.
Duration of observation
It was intended that the GPS location devices would be
provided by social-care staff for as long as they were
deemed useful. However, we aimed to evaluate the intervention over approximately six months to allow a sufficient number of wandering events (as identified by the
caregiver) and the possibility of some admissions to hospital or care homes or both to occur and also to give an
indication of the likely retention of these devices. A previous local audit suggested around 20% of those meeting
the inclusion criteria would have at least one admission
during this period and previous research suggested that
the median length of time between first wandering and
institutionalisation was eight months [21].
Frequency of follow-up
Participants were recruited throughout the period of the
research project. We aimed to follow-up participants at
six months for the main assessment, and also to contact
them on two occasions approximately two months apart
by telephone, to obtain health and social care usage data
(see below). However, we accepted that for people recruited late in the period of the research project that the
observation period and planned number of iinterviews
would be curtailed. For those who requested it we
agreed that the final assessment could be carried out by
telephone.
Testing the acceptability of baseline and outcome
measures
Baseline measures
Around the time of receiving the GPS or shortly afterwards, we trialled the following instruments with people
with dementia and their caregivers; Modified Caregiver
Strain Index (mCSI) [22], Hospital Anxiety and Depression Score (HADS) [23] for caregiver, Mini Mental State
Examination (MMSE) [24] for patients, Barthel Score [25]
for patients, the Index of Capability for older people for
both caregiver and person with dementia (ICECAP-O)
[26], the Carer Experience Scale (CES) [27]. We also asked
Milne et al. BMC Psychiatry 2014, 14:160
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Page 4 of 13
caregivers about the perceived frequency of wandering/
lost episodes, estimated time spent searching and number
of days spent in residential care in the previous six
months.
caregivers namely the ICECAP-O capability index [26]
and the Carer Experience Scale [27]. Population utility
scores (on a scale from 0 to 1) are available making these
instruments suitable for use in economic evaluation.
Outcome measures at end of study
Time spent searching
We repeated the baseline measures (apart from MMSE
and Barthel) and also collected: adverse events e.g. accidents, injuries and falls reported by caregivers; number
of episodes of wandering or getting lost documented by
caregiver during the study period and detected by GPS;
estimated number of hours searching for participants during the study period, and for one type of device, the number of triggers of geo-fence breaches from GPS records;
number of participants admitted to, time to admission
and number of days spent in nursing or residential homes
or NHS long-term care facilities during the period of
the intervention; number of attendances by family practitioner, out-of hours (OOH) calls, emergency room, outpatients and hospital admissions, number of recorded calls
to social services.
Initially, we asked carers to estimate how frequently they
felt the person with dementia was “wandering”, but they
found this a difficult concept, because they wanted the
person to continue walking independently. We therefore
asked them to record in a diary how much time they
spent searching for the person and how frequently they
did this.
Resource use and quality of life measures for use in
economic evaluation
Wandering or getting lost represents only one of the
reasons why people with dementia, many of whom have
multimorbidity, may engage with health or social services. However given the potential for injury and the
association with early admission to long term care we
thought it useful to determine the feasibility of collecting
data on health and social care use. Economic evaluation
compared the costs and benefits of GPS with standard
care. Costs included all health and social care resource
use (i.e. general practitioners, hospital out-patient and
in-patient episodes, emergency room and out-of-hours
attendances, social care visits, admissions to care home).
Resource use can be identified in a number of ways
within a trial including: patient questionnaire, patient
diary and patient records. These were piloted with caregivers within the feasibility study. Telephone questionnaires were scheduled every two months. In terms of
patient records we attempted to obtain data from hospital, social care and general practice records. Response
rates and where possible estimates of resource use were
compared across the three methods i.e. telephone questionnaire, diary and patient records.
Economic evaluations tend to rely on generic quality of
life measures such as the Euroqol-5D (EQ-5D). However,
these are not appropriate in this context as they only capture health-related quality of life of the patient and not
general quality of life and ignores any impact on the quality of life of the caregivers. We therefore explored the
feasibility of alternative quality of life instruments which
can capture important outcomes in patients and their
Method of assessing baseline and outcome measures
Participants were seen by the researcher at the participants’ homes to complete questionnaires or if not convenient for the caregiver the interview was conducted by
telephone with the questionnaires having been previously
posted to them to read. Electronic GPS records were analysed for breaches of the geo-fence to compare with caregiver recollection of “wandering” episodes, although we
accepted that this might be an underestimate of concern
about being lost as although people might not breach their
geofence they would be late home. We recorded the views
of caregivers and people with dementia on the obtrusiveness of the measuring process.
Study power and statistical analyses
This was a feasibility study designed to explore recruitment, the acceptability of the intervention and the research instruments, and provide some indication of the
variance in outcomes to inform the power of a possible
future trial. We aimed to recruit 20 people monitored
for six months as this was considered to be sufficiently
large enough to provide a representative sample of the
kinds of people being offered this service and based in
the audit above a realistic probability of episodes of getting lost and admissions to long-term care occurring.
Simple descriptive statistics were used for feasibility and
acceptability measures, and for variability of outcomes
of interest including hospital and social care use, in
order to inform the design of a larger study.
Qualitative evaluation
People with dementia and caregivers: We conducted semistructured interviews with family-caregiver/participants
with dementia at the time of receiving the GPS device or
shortly afterwards to explore their hopes and concerns
about the GPS and what safe walking meant to them. We
planned to re-interview caregiver/participants between
4–6 months later to find out how the intervention had affected them, however some were recruited so late in the
study period it was considered that an interview so soon
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