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NIHR CLAHRC Wessex
University of Southampton
Building 67
Highfield Campus
Southampton
SO17 1BJ
Protocol for Work Package 1 (Version 3, 09/05/2018)
Theme 5: Self-Management and Healthy Ageing Design and development of a community networked digital self-management intervention for older people to keep active with joint pain (CONTAIN Joint Pain)
Research and Implementation University of Southampton Team Researchers:
Jo Adams: [email protected] (PI and Project Lead) Paul Clarkson: [email protected] (Research Fellow) Anne Rogers: [email protected] (Process evaluation Lead, GENIE
analysis) Ingrid Muller: [email protected] (LifeGuide Lead and LifeGuide analysis) Ivo Vassilev: [email protected] (GENIE implementation Lead and Analysis) Nicky Wilson: [email protected] (Clincial lead for Content development) Sean Ewings: [email protected] (Statistical advisor) Nigel Arden: Prof in Rheumatic Diseases: [email protected] (Advisor re Joint
pain content)
CLAHRC Wessex Partners and Collaborators
Prof Maria Stokes: [email protected] (Advisor for Physical Activity and Joint pain)
Dr Charlotte Brooks: [email protected] (Health Literacy Advisor)
Carolyn Race: [email protected] (Portsmouth City Council Occupational Therapy )
Prof Jo Protheroe: Professor of Primary Care: [email protected] (Community GP advisor)
Dr Tom Margham: Tower Hamlets GP: [email protected] (Community GP MSK advisor)
Mr Jem Lawson: Patient and Public Involvement Representative: [email protected]
Page 1 of 40WP1_Version 2_06/02/2018
Prof David Hunter: Prof in Rheumatology: [email protected] (Advisor re MyJoitn Pain integration)
Ms Liz Whale: Southampton City Libraries: [email protected] (Community Libraries collaborator)
Mr Paul Hedges: Saints Foundation: [email protected] (Community collaborator)
Ms Barbara Cooke: Radian: [email protected] (Community collaborator)
Dr Sian Smith: Health Psychologist: [email protected]: Health Literacy Collaborator
Mr James Richardson : Research and Innovation Good Things Foundation: [email protected]: NHS Widening Digital Inclusion Advisor
Start date: Feb 2018
End date: Dec 2019
Red text refers to changes made based on amendment 40268.A1 (Approved: 09/05/2018)
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AbstractJoint pain can have a formidable impact on older people’s ability to lead healthy active
lives. Joint pain attributed to arthritis is a leading cause of pain, functional loss,
increased morbidity and health service costs in the UK. Arthritis and joint pain is also
disproportionately prevalent in lower socio-economic and marginalised groups. These
groups are more likely to have fewer health and digital literacy skills, less access to
self-management support (Rogers 2015) and significantly worse health outcomes
when accessing and using NHS services than other groups in the population. Older
people access digital health resources yet digital resources and tools are rarely
designed to be accessible to people with lower health literacy skills. These groups
therefore have most to gain from approaches designed to increase digital self-
management support.
There is no cure for arthritis. National guidelines provide recommendations for
supporting active self-management for older people with osteoarthritis, but this is
seldom supported by healthcare providers. Clinical self-management support
strategies often fail to fit with individuals’ everyday life and the circumstances in which
people experience and manage their pain. Consequently, older people with joint pain
are rarely supported or engaged with self-management support to help manage their
joint pain and support leading healthy active lives. Resources for long term condition
self-management support are increasingly developed and delivered more effectively
outside of traditional clinical settings (Kennedy et al. 2013)
Self-management interventions supplement, are an alternative to, and compliment
traditional medical care. They are designed to support people to effectively manage
their symptoms and live everyday lives with a long term condition. However, many
clinical self-management interventions have failed to accommodate the varied needs
and skills of populations with joint pain. Self-management support for long term
conditions is also increasingly recognised as needing to be orientated to taking account
of domestic and social contexts and outcomes seen in terms of person-centred
priorities such as well-being and sense of normality in everyday life.
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This research builds upon our previous Arthritis Research UK funded research and
develops new international and local Wessex based community partnerships for older
people with joint pain. We will work alongside patient partners to design a novel joint
pain supported self-management digital tool that aims to build individual and network
capacity for illness and relational work, increase social network diversity and the
capacity to connect people. This digital tool will link individualised joint pain self-
management support with social network activation designed to connect people to the
community resources and networks they need to optimise self-management
opportunities to live healthy lives as they age. This combination should help older
people with joint pain to engage and sustain in managing their symptoms so that it
becomes part of their routine. Ultimately, the programme will be made available in
community centres and libraries across Wessex, while also being available on the
internet to be accessible from individual’s homes.
Patient and public involvement
People with arthritis and lay members of the public have been involved with the
development and design of this proposal from its inception. These partnerships will be
extended to form a significant and integral part of user design groups to develop the
linked digital self-management intervention. We have visited social learning and
community centres in areas with high deprivation indices to listen to the views of older
people about the use of web based self-management resources to maximise function
and mobility (Heron et al. 2017 accepted in press). In addition, we sought service user
perspectives on how to successfully engage harder to reach populations in research.
We have worked alongside the Patient and Public Involvement (PPI) group associated
with the Arthritis Research UK Centre of Excellence for Sport, Exercise and OA and
discussed the relevance and suitability of digital resources such as MyJointPain.org.au
to a UK population and health service. This demonstrated that the content and format
was already persuasive to a UK population and was deemed relevant and appropriate
by service users (Algeo et al. 2017). We have carried out community PPI focus groups
that included harder to reach groups and ethnic minority populations and have
incorporated their views on what is most important to include in digital self-
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management interventions in relation to joint pain (Adams et al. 2016c) into our
programme of work. We have also worked alongside our lay PPI members as co-
authors to inform our search strategies for the review of digital websites for people
with lower levels of health literacy (Chapman et al. 2017 (accepted in press)). We have
PPI representation on our team (Lawson) and have established a steering group
inclusive of PPI representation to advise on the content and format of our participant
information, the intervention itself and the research processes. We will work with our
PPI representatives to ensure our research is disseminated in lay language and through
lay platforms.
BackgroundThe aim of NIHR CLAHRC Wessex is to improve the health of people in Wessex and the
quality and cost-effectiveness of health care. Long term condition management is a
priority focus for NIHR CLAHRC Wessex. Research that benefits all NHS populations
across Wessex, including harder to reach populations is timely when much clinical
research has been unsuccessful in engaging these groups in research, and they are the
groups that have the most to gain (Bonevski et al. 2014).
Joint pain, self-management support and daily life
Globally, musculoskeletal conditions are the second largest cause of disability and
account for 30.5% of all years lived with disability (Murray et al. 2013). The personal
impact of living with a musculoskeletal disorder can be formidable with high costs to
individuals and health services. Joint pain caused by osteoarthritis (OA) is the most
common form of joint pain and OA is becoming increasingly prevalent, with no known
cure. Disability associated with OA joint pain has risen in the UK by 16% over the past
20 years (Murray et al. 2013) and from 2000-2010, direct NHS costs associated with
the management of OA increased by 80% (Chen et al. 2012). These costs are set to rise
further with continuing health inequalities and the increase in populations where OA is
most prevalent (House of Commons Health Committee 2009). However, these costs
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can be reduced through effective self-management interventions and such approaches
have been identified as a priority for individuals and health services in the UK (Naylor
et al. 2013).
Self-management strategies for people with long-term conditions are complex
interventions specifically targeted at patient education and behaviour modification.
They are designed to encourage people with long term conditions to take an active
self-management role to supplement medical care and improve health outcomes
(Kroon et al. 2014). For people with joint pain, self-management interventions may
include specific targeted regional exercise, general exercise, activity modification and
pacing, joint protection techniques and use of orthoses.
Generic, formal self-management programmes have been developed and tested with
varying success. Among the more effective programmes are the Expert Patient
programmes (Rogers et al. 2008) and the Arthritis Self-Management Programme
(Vermaak et al. 2015). Some individual intervention components of these generic
programmes have evidence of effectiveness for example, resisted exercises (Lamb et
al. 2015); individual counselling (Lamb et al. 2015) and cognitive behavioural
programmes (Hewlett et al. 2011; Carpenter et al. 2012). However, the benefits of
self-management interventions have not been universal and many self-management
interventions have failed to accommodate the varied needs and skills of more
disadvantaged populations, particularly those populations with lower health literacy
levels (Conn et al. 2013).
Joint pain caused by osteoarthritis is often perceived to be a natural part of the ageing
process for which little can be done (Paskins et al. 2013) and whilst education and self-
management form key recommendations for intervention with this patient group
(Naylor et al. 2013; McAlindon et al. 2014), conservative non-pharmacologic self-
management approaches are currently underused (DeHaan et al. 2007), and rarely
provided in line with national guidelines (DeHaan et al. 2007; Porcheret et al. 2007).
Traditional self-management programmes have also failed to accommodate the varied
needs and skills of more disadvantaged populations with OA and joint pain (Lowe et al.
2013a).
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Previous research suggests that older respondents portray their symptoms of joint
pain and arthritis as a normal and integral part of their biography, whilst at the same
time talk about the highly disruptive impact of symptoms on their daily lives. These co-
existing meanings have been linked to needing to take account of the contexts of
cultural connotations of ageing and the implications for meeting health care needs of
older people with joint pain. In relation to self-management support a critique of a
narrow focus of individual outcomes framing self-management support as an adjunct
to a medical approach has been fostered. In relation to living with joint pain and the
design of self-management support initiatives research points to the previous under
acknowledgement of, embodied and emotional hard work involved in maintaining a
daily life that allows people to fulfil social roles and relationships. There is a
recognised need to firstly consider these contextualised personal and social issues of
people living with joint pain before designing and promoting self-management support
systems (Ong et al. 2011)
Accessible resources for harder to reach individuals with lower health literacy levels
Joint pain and osteoarthritis is disproportionately prevalent in lower socioeconomic
populations (Luong et al. 2012). These populations are also more likely to have lower
health literacy and limited access to digital literacy skills and resources. They are also
most likely to disproportionally benefit from opportunities for physical activity when
they are made available to them through access to networks with local community
groups (Koetsenruijter et al. 2015).
“Health literacy “describes the cognitive and social skills that determine the motivation
and ability of individuals to gain access to, understand and use information and other
resources in ways which support and promote people’s attempts to maintain good
health (Nutbeam 1998). Health literacy is context specific. The way health care is
delivered has a substantial effect on people’s ability to navigate through the system as
a patient (Jordan et al. 2010). Social resources (social networks, family support) as well
as personal skills (reading and numeracy) are important in using health information
and services (Dodson et al. 2015). Health literacy is important as low health literacy is
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associated with worse health outcomes, greater difficulty following medical advice
and self-managing long term conditions (Berkman et al. 2011; Sheridan et al. 2011;
Loke et al. 2012; Rowlands et al. 2015). For healthcare approaches that require active
engagement of patients, such as self-management support for joint pain, this is
particularly pertinent (De Silva 2011; National Institute for Health and Care Excellence
2014)
Self-management and healthy ageing for older people with arthritis
Providing effective and cost efficient self-management support strategies for long-term
conditions has been identified as a top priority for NHS Commissioners (Naylor et al.
2013). More importantly it improves individual’s quality of life and the ability to
continue to do valued activities. Self-management education programmes are
complex programmes that target patient education and behaviour modification. They
are designed to support people to take an active self-management role and to
supplement medical care to improve outcomes (Kroon et al. 2014) and can be effective
for patients with joint pain and OA (Thorstensson et al. 2015). Individual arthritis self-
management programmes can improve self-efficacy and pain management behaviours
in some patient groups (Buszewicz et al. 2006) but they are not always cost effective
when delivered in a clinical setting (Patel et al. 2009). Effective self-management
programmes use educational approaches and are dynamic iterative processes that
support and enable people to manage their illness, adjust to their condition and to
optimise their health and well-being (de Ridder et al. 2008; Zangi et al. 2015). Self-
management support approaches for people with OA have traditionally focused on
individual approaches delivered in clinical settings that include, for example, specific
targeted regional exercise, general exercise advice, activity modification and pacing,
joint protection techniques and the use of orthoses. However, implementation of
these self-management activities is carried out during day to day life, within individual
personal, social and community contexts (Figure 1) (Rogers et al. 2011). There are
also some suggestions that using a combined approach which links lay knowledge and
traditional medical knowledge about symptom management is an effective
combination in trials of long term conditions including people with osteoarthritis.
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Figure 1: Self-Management, Long term conditions and Social Networks (Rogers et al.
2011)
In long term conditions, self-management approaches that acknowledge the impact of
everyday social networks in supporting people to engage with and sustain self-
management behaviour in everyday life, are most effective (Reeves et al. 2014).
Provision of self-management education via any route is defined as a core intervention
for people with musculoskeletal conditions and joint pain (Miles et al. 2011), yet to
date, there has been little of what Rogers et al., identify as the translation and
implementation of an (arthritis) self-care agenda that acknowledges and incorporates
the resources and networks operating in patients' domestic and social environments
and everyday lives (Rogers et al. 2011). This project will draw on existing digital
resources/ techniques for developing supported self-management, and link OA joint
pain self-management techniques with the Generating Engagement in Network
Involvement (GENIE) social network activation tool.
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GENIE: A social network mapping tool, linking individuals with valued and preferred local and
online activities and resources (https://genie-net.org/)
Access to resources to enable self-management can be built through new connections
or reconfiguring, navigating and negotiating the use of existing networks to engage
with wider resources embedded in voluntary and community groups and organisations
(Vassilev et al. 2014). This is particularly the case for those from socio-economically
disadvantaged backgrounds. Participation in community organisations is consistently
related to better health status and improved efforts to self-manage, especially for
people of lower socio-economic status (Koetsenruijter et al. 2015). Engagement with
such support is improved by user awareness of existing local groups and reflection
about their suitability. For people with long-term conditions (such as OA), social
networks provide a means of mobilising, mediating and accessing support for health
and well-being. A facilitated web based social networking tool designed to foster
engagement and link people to opportunities for self-management support through
social involvement has been designed and successfully implemented (Kennedy et al.
2016). The Generating Engagement in Network Involvement (GENIE) tool maps social
networks, allows for user-centred preference and need assessment, and facilitates
engagement with local support resources. It is designed to improve network capacity
for illness and relational work, extend access to resources and enable individuals and
members of their networks to overcome barriers to participation by identifying where
social contact is lacking, focussing attention on valued activities and identifying
potential access to social and health enhancing resources. It is based on evidence of
social network properties and types, and mechanisms relating to managing health and
wellness. Previous implementation and testing of GENIE has shown that it is both
appropriate and acceptable to individuals with long-term conditions. In linking
resources to the local environment the tool can help sustain long term self-
management by facilitating ongoing low key activities with social involvement of
others.
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“MyJoint Pain” ( https://www.myjointpain.org.au/) (Umapathy et al. 2015a)
MyJointPain.org.au has been created by Arthritis Australia with guidance from an
expert clinical panel. The intervention has been designed and informed by behaviour
change theory. The aim of MyJointPain (MJP) is to help people with OA or joint pain
better manage their condition in collaboration with their healthcare team using the
most up-to-date research and clinical guidelines available. The website is intended to
be used alongside advice offered by qualified healthcare professionals and can
supplement agreed treatment and management strategies. It provides an easy-to-use
assessment tool to indicate a person’s risk of hip or knee OA. Subject to a user's inputs,
the website provides customised, evidence-based OA management information.
Recommendations to improve function and symptoms are also summarised, providing
the basis of a self-management plan.
Life Guide (https://www.lifeguideonline.org/) (Yardley et al. 2015)
The LifeGuide software is a unique, open source tool to develop interactive online
programmes to support behaviour change. It allows the development and modification
of online interventions without the need for software development expertise. The
software was developed at the University of Southampton and has been used to
successfully develop numerous digital interventions for a range of public health and
long term conditions, including self-management interventions for people with low
health literacy.
Integration of digital interventions for older people with OA joint pain self-
management
Digital interventions can play a substantial part in supporting self-management
strategies in long term conditions (Williams 2011; Santer et al. 2014; Yardley et al.
2014; Azevedo et al. 2015). They have been shown to produce significant changes in
health-related behaviours, particularly when intervention development is based on
theory and multiple behaviour techniques are incorporated (Webb et al. 2012). A
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Cochrane review of digital interventions for long term conditions has shown that they
improve clinical outcomes (Murray et al. 2005). Digital interventions have been shown
to reduce use of health care resources (Ory et al. 2013), and as interventions can be
tailored according to user preference, a digital approach may reduce health
inequalities compared with generic printed information, which is often aimed above
average reading age (Davis and Wolf 2004). It has been recognised that rheumatology
patients should benefit from advancing digital interventions to promote supported
self-management (Azevedo et al. 2015). A digital intervention can support individuals
who could benefit from enhanced motivational strategies by embedding regular
motivational support within email and /or text reminders and additional email contact.
All of which can help to optimise uptake of self-management health behaviours and
maintain behaviour change, improve self-efficacy and active participation (de Jongh et
al. 2012). There is evidence that patients adhere to digital structured tailored self-
management advice to manage pain (Rini et al. 2015). The internet is already used
extensively and successfully by older adults for disease self-management (Stellefson et
al. 2013). For people with OA, the internet has been used successfully to promote
supported self-management (Pietrzak et al. 2013), increased patient satsifaction with
OA care (Sciamanna et al. 2005) and has addressed concerns about limited contact
time with health professionals and lack of suitable support materials (Der Ananian et
al. 2006).
Our previous work has demonstrated that older people from disadvantaged
communities with lower levels of health literacy that have access to the internet, are
willing to engage with digital resources to manage their joint pain and respond best
when information is simple and presented alongside video, icons and illustration
(Adams et al. 2016c; Parsons and Adams 2017 (submitted in review) ; Heron et al. 2017
accepted in press). The MJP digital self-management intervention has also already
been shown to be effective in an Australian OA population (Umapathy et al. 2015b)
and the structure and content has been deemed by our PPI partners with joint pain to
be useful and relevant for a UK population (Algeo et al. 2017).
Our systematic review and qualitative evidence synthesis (Lowe et al. 2013b; Lowe et
al. 2013a; Lowe et al. 2014) highlighted a lack of the evidence to support the
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effectiveness of current self-management approaches for people with musculoskeletal
(MSK) disease including OA, and lower levels of health literacy. We have developed
community collaboration approaches that successfully recruit harder to reach OA
populations and our qualitative research reveals that people with lower levels of
health literacy and OA report that “nothing could be done to help” their arthritis joint
pain, that they found OA self-management information too complex and that they
often sought support from local social networks for day to day self-management
(Adams et al. 2016a). Our previous interviews with health professionals identified
some good practice examples for working alongside people with lower health literacy
but also illustrated that most health professionals feel ill equipped and have
insufficient time during clinical appointments to communicate and explain self-
management information effectively to people with lower health literacy levels (Adams
et al. 2016b). Previous evidence indicates that supported self-management
approaches are not effectively reaching older people with OA (Algeo et al. 2017). As a
consequence uptake of self-management strategies to support healthy ageing in this
population is poor. For those from harder to reach groups with lower health literacy
levels it is even worse. Digital e-health networked self-management tools offer a new
supported approach for this population.
Research Aim and ObjectivesWe aim to design and develop an accessible digital personalised self-management and
social network activation programme for older people delivered in community centres
across Wessex.
Objectives:
1. To design and develop, alongside user led groups, a LifeGuide digital
self-management programme that is accessible to people with lower health literacy.
2. To link this digital personalised self-management programme with the GENIE
social network activation tool.
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Methodology This protocol represents work package one of a larger mixed methods project and will use qualitative
approaches including focus groups and think aloud interviews. Our approach is informed by theory
which influences the methods and evaluation. Diffusion of Innovations theory (Rogers 2003) will be
used to help inform our understanding of the factors that may influence the adoption of our ehealth
tool. Specifically, we will draw upon this theory to explore compatibility, complexity, relative
advantage and observability of our ehealth tool. The development of our ehealth tool will use an
asset based approach; where health literacy is viewed as a skill to be developed as opposed to a
barrier to be overcome (Nutbeam 2008). We will use a Person Based Approach (PBA) (Yardley et al.
2015) using qualitative methods to iteratively design and develop the ehealth intervention (Band
2017) alongside a range of people from the target population. Using PBA, we will involve service
users from the start of the development of the tool and iteratively modify characteristics of the
ehealth tool that are impractical, too complex or incompatible.
Specifically, we will undertake up to three focus groups in community venues with service users who
have had the opportunity to review the MJP and Genie internet resources. We will identify guiding
principles that can inform intervention development through highlighting key behavioural issues that
the intervention must address (Figure 2 – Part A). Following these focus groups, the first prototype of
the new intervention will be developed and then tested with up to ten service users from the focus
groups in “think aloud” interviews (Figure 2 – Part B). A second round of interviews with the same
ten service users will be conducted after the intervention has been updated. These approaches have
been successfully used previously with people with lower health literacy levels (Muller 2017).
Methods – Sample and Setting Work package 1: Design of a Joint Pain and Community Networked Digital Self-
Management Tool
We will iteratively design and develop a LifeGuide digital personalised self-management
programme (drawing on the digital MJP intervention) in conjunction with our service
user groups. These groups will likely represent a mix of abilities when it comes to health
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literacy. We will link this with the GENIE social network tool to develop a community
networked approach to managing joint pain.
Service users will be identified through existing community contacts, including
Southampton city libraries, Radian and the Saints Foundation. The Saints Foundation
and city libraries have a number of established groups which the research fellow will
visit to provide an informal presentation about the research. Interested participants will
be given a participant information sheet (PIS) (Appendix A) and a more visual guide to
the study (Appendix B) and will be able to consent to take part after they have had time
to read the PIS and answer questions (Appendix C). Alternatively, participants will be
able to take the PIS away and discuss the study with friends and family. The RF will
return a week later to consent those who are interested in taking part.
A poster will be designed for the Radian community café providing details of the study
and the inclusion/exclusion criteria for participation (Appendix D). A participant
information sheet (Appendix E) and visual guide to the study (Appendix B) will be
available from staff in the café for individuals who are interested. The poster will
provide dates and times when the research fellow will be available in the café to answer
questions and consent participants into the study. Potential participants will also be able
to contact the research fellow via the contact details on the PIS to ask questions or will
be able to leave their contact details with the café staff on an indication of interest form
(Appendix F) sealed in an opaque envelope that will be passed onto the research fellow.
The research fellow will email or post a consent form to the potential participant and
provide a freepost envelope for return.
The RF will make clear that participation is voluntary during the presentation, on the
poster and when available to answer questions. The RF will check that potential
participants meet the inclusion criteria before written informed consent is obtained.
Figure 2 details the recruitment strategy and process.
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Figure 2: Recruitment strategy and process
People will be eligible to take part if they are 50 years of age and over and have self-
reported joint pain. People with a visual or cognitive impairment that would prevent
them from being able to give informed consent and/or an inability to read and
understand English will be excluded as this project is aimed at designing an online
visual self-management tool.
Participants will be able to choose whether they take part in part A (review of
MyJointPain and Genie, followed by focus group) or part A and part B (two interviews
on a one-to-one basis reviewing prototypes of the new tool). We will recruit up to
twenty participants across three focus groups for part A. We will recruit up to ten
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participants from the original twenty for part B. Once consented to take part service
user groups will be held in community locations (such as Radian community café;
Southampton City Library; the Saints Foundation community venues) in Southampton.
These will be facilitated by the research fellow and other researchers on the project,
and where appropriate by community centre staff. Participants taking part in part B
will be given the choice of where this takes place, either the community venue or their
own home.
We will ask service users to log on, access and use the interactive MyJointPain.org.au
tool before coming to the focus group session if they have an accessible computer or
tablet, particularly the screening element of this site. If they are unable to do so, the
service user will still be eligible to take part in part A. The reason for asking participants
to review this website prior to the session, as well as during the session is that the
screening element of this site is time consuming. This would limit the amount of time
available for review of the remaining site content during the session.
The research fellow will contact participants who have been recruited based on ethics
approval 40268 to ask if they would be willing (and have the resources) to review the
MyJointPain website before coming to the focus group session. If so, participants will be
particularly encouraged to try the screening process on the site. These participants will be
made aware that this new element to the study is voluntary and does not affect their
involvement in the rest of the study. The research fellow will provide a new participant
information sheet to both existing and new participants either in person, or via post or email
detailing the review of the ‘my joint pain’ screening process either before the session or during
the session. This will provide information about the personal information that will need to be
entered into the site to undertake the screening process and make clear that this is voluntary.
This includes gender, date of birth, height, weight, diagnosis and pain levels. Participants will
be informed that this data will be held on the ‘my joint pain’ servers and that this anonymous
account created for them will be deleted at the end of the study.
In developing and designing the new linked digital intervention we will develop
prototypes to explore and review with participants. We will iteratively evaluate the
perception of these prototypes with our participants (Figure 2) and with the research
team. We will develop LifeGuide prototypes of a personalised intervention and
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conduct usability testing to inform the development of the intervention. We will
conduct detailed “Think Aloud” interviews with service user participants to record in
real time how people, including those with low health literacy react and respond when
using the digital intervention. These interviews will be digitally recorded using two
devices to explore service users’ views about delivery, content and style of the joint
pain self-management digital intervention prototype. A gantt chart at the end of this
protocol (see Timescale section) details the process and flow of the research as well as
the expected timescales for the project.
We will adopt an iterative cycle for developing the LifeGuide programme and linking it
to the GENIE digital intervention, as illustrated below (Figure 3). The collected
qualitative data will be transcribed and coded to establish guiding principles for the
development of the intervention at each iterative stage. We will review the qualitative
information provided using content and thematic analysis to identify what aspects of
the intervention are persuasive, relevant and feasible for people with adequate and
lower health literacy levels and joint pain. This will be undertaken concurrently with
the intervention development, therefore allowing amendment and further testing of
the intervention.
Figure 3: Approach to developing iterative guiding principles of our linked eHealth
digital self-management tool
Ethical considerations
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Public health ethical principles (Guttman and Salmon 2004) for researching harder to
reach community populations will be used to guide the design of the study’s methods
and procedures. All materials required for the study will be developed with the
assistance of Patient and Public Involvement representatives. Development and
refinement of focus group/interview questions will include a patient involvement
partner. Health literacy literature has informed the study design and the study
researcher is experienced in working alongside community populations.
Participants will be provided with a participant information sheet and visual guide to
the study that is written in accessible language with attention to sentence length and
structure (Appendix A, B, E). This has been developed to have a reading age of < 12
years of age. We will personally visit our target community settings to talk about and
answer questions about our study. Written consent will be sought from participants
before attending the first data collection session in relation to part A of the research
programme or part A and B depending on what each participant agrees to (Appendix
C). Verbal consent will also be sought at the start of each one-to-one interview.
For participants already recruited to the study under ethics approval 40268, the
research fellow will make contact and ask if they are able to review the MyJointPain
website, including screening tool, before the first session or during the session. All
existing and new participants will be provided with a new version of the PIS and re-
consented, taking account of the screening tool element of the site and a transparency
statement to provide information about where the data they enter will be held and the
deletion of this data at the end of the study.
As part of reviewing the screening process on the My Joint Pain website, participants
will be required to login. We will provide coded login details so the participant remains
anonymous on the My Joint Pain servers. As part of the screening process, participants
are asked a series of questions about themselves, these include gender, height, weight,
date of birth, diagnosis and pain levels. These details will be held on the My Joint Pain
servers under the anonymised login details and will be deleted at the end of the study.
Participants will be informed of this verbally by the research fellow and in the PIS.
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All data from participants will be anonymised, pseudonyms and participants numbers
will be used and no personal identifiable data will be included in final reporting. All
researchers (including the research fellow) and collaborator team members listed at
the start of this application, will adhere to the principles of confidentiality. No
personal data of participant’s will be kept on the same document file and all data will
be stored on a password protected computer. All paper copies of the MSK-HQ and
health literacy questionnaires as well as the demographics sheets will be stored in a
locked filing cabinet and dealt with in line with the University of Southampton’s secure
data storage policy.
Participants will be free to withdraw at any time during the research process. This will
be detailed and verbally explained during consent and checked at each data collection
time point.
20
Timescale
Page 21 of 40WP1_Version 2_06/02/2018
22
AppendicesAppendix A – Participant information sheet – Saints Foundation / City libraries
Appendix B – Visual guide (participant information sheet) to the study
Appendix C – Consent form
Appendix D – Recruitment poster for use in Radian community café
Appendix E – Participant information sheet – Radian community café
Appendix F – Indication of interest form (Reply sheet)
Page 23 of 40WP1_Version 2_06/02/2018
Appendix A – Participant information sheet – Saints Foundation / City libraries
Research Information Sheet v2
Project: Designing a new website to help people keep active with joint pain
Researchers: Paul Clarkson, Jo Adams, Ivo Vassilev Ethics number: xxx
We invite you to take part in a study
Please read this information before deciding to take part in the study. Please ask us any questions. Talk to others such as family or friends about the study if you wish. If you are happy to take part we will ask you to sign a consent form.
We would like to create a new internet-based resource, which will be helpful to people who suffer from joint pain. We would like to find out about what is good and bad about two current websites called My Joint Pain and Genie.
My Joint Pain is to help people manage their joint pain. Genie supports people to think about who and what helps them to manage their
health.
What is the project about?
Joint pain is a problem for a lot of people. It can have a big impact on their lives. Osteoarthritis is the most common cause of joint pain. People often think this is just part of getting older and nothing can be done.
Being able to do things yourself and involving others around you can help you to do the things you want to do and reduce your joint pain.
We would like to design a new internet-based resource that helps people to manage their joint pain better. To make sure that this works for people with joint pain we would like to find out:
- What you think is important to include in this internet-based resource. - What would make it easy to use.
24
Why have I been asked to take part?
You have been asked to take part in this study because you go to a group at the Saints Foundation, the library (*delete as appropriate based on group*), have joint pain and are 50 years of age or over.
What would taking part involve?
The project comes in two parts. If you decide to take part, we will ask you to sign a form to say you are happy to either:
o Take part in part A only o Or take in part A and part B.
You can do this straight after reading this sheet or you can take this information away and talk to anyone about the project. We will then come back a week later to see if you want to take part.
It is up to you whether you take part or not. You can have a friend, family member or carer with you during part A or part B if you
wish. The first ten people who sign up for part B will be chosen. Unfortunately, we cannot
take more than ten.
Part A
This will be held at (the Saints Foundation the library *delete as appropriate based on group*) on the day of the project and we will ask you to do three things:
1. We will ask you to answer a few questions about yourself. We can help you to do this if you wish. We will then ask you to look at a website called My Joint Pain for 20 minutes and think about what you like and dislike about it. We will give you paper and a pen to note down your thoughts. We will be around to help or answer questions.
2. We will then ask you to look at another website called Genie with a member of the team and two other people for 25 minutes and think about what you like and dislike about it.
3. We will ask everybody taking part at each setting to join a group and say what you thought of the websites. We will put the websites on a screen so you can point things out. This will take up to 45 minutes. We will record everyone’s voices to make sure we don’t miss anything.
Part B
Part B will happen about 8-10 weeks after part A.
We will ask you to look at the new resource that has been developed and let us know what you think. We will do this at (the Saints Foundation, the library *delete as appropriate based on group*) or at your home if you prefer. This will be on a date of
25
your choice. We will ask you to talk through your thoughts as you use the resource. We will record your voice to make sure we don’t miss anything.
We will use what you tell us to improve the new resource. If you are happy to, we will ask you to look at the new resource again. This will be on a date that is best for you.
Are there any benefits in my taking part?
We are offering a £5 gift voucher as a thank you for being involved in part A and another for taking part in part B. The new resource may also be useful for you to self-manage your joint pain. We hope this may help others in the future.
Are there any risks involved?
It is not likely that there will be any risks to taking part. Taking part will not affect any other appointments you have in the NHS. You will not
need to stop using anything else that you find helpful. If you find any part of the project upsetting we are happy to answer questions or
provide support. If you prefer support from the community group leader we will ask them to help.
Will my taking part be confidential?
For part A you will be part of a larger group where you may know others in the group. We will ask everyone taking part not to share information about others in the group with anyone else.
For part B you will be giving your thoughts to one of the team, which will be kept confidential.
The only reason for not keeping the information confidential will be if you are considered to be a risk to yourself or others.
As you and others are able to invite a friend, family member or carer to come with you, there may be other people around who are not taking part directly. We will also ask them to keep the information confidential.
We will not use your name on any reports. The information you give us will be locked away and only the people working on the
project will see it.
What happens if I change my mind?
You can leave the project at any time and do not have to give a reason. If you choose to leave this will not affect anything else. You can decide what we do
with any information you’ve given us already. You can ask for the information to be destroyed or kept.
What happens if something goes wrong?
26
If you have a concern about the study please let us know. If you want to talk to someone who is not working on the project or if you would like to complain then you can contact:
The Research Governance Office (Address: University of Southampton, Building 37, Highfield, Southampton, SO17 1BJ ; Tel: +44 (0)23 8059 5058; Email: [email protected] .
Where can I get more information?
Please let me know if you have any questions. I can be contacted by email or telephone.
Paul Clarkson (Research fellow)
Telephone: 02380 597909
Email: [email protected]
Thank you very much for taking the time to read this information
27
Appendix B – Visual guide (participant information sheet) to the study
28
Appendix C – Consent formCONSENT FORM v2
Study title: Contain Joint Pain: The design and development of a community networked digital self-management intervention for older people to keep active with joint pain
Researcher name: Paul Clarkson, Jo Adams, Ivo VassilevERGO number:
Please write your initials in the box(es) if you agree with the statement(s):
I have read and understood the information sheet (23/1/18, v1) and have had the opportunity to ask questions about the study.
I agree to take part in PART A of this research project, to have the group sound recorded, and agree for my data to be used for the purpose of this study.
I agree to take part in the group (PART A) and individual sessions (PART B), to have the group and individual sessions sound recorded and agree for my data to be used for the purpose of this study.
I understand my participation is voluntary and I may withdraw at any time, for any reason without my rights being affected.
I agree to keep the comments of others in the group private and treat others taking part with respect.
I am happy to be contacted regarding other research projects. I therefore consent to the University retaining my personal details on a database. I understand that my personal details will be kept separately from the research data detailed above. My consent is conditional upon the University complying with the Data Protection Act and I understand that I can request my details be removed from this database at any time.
Data ProtectionI understand that information collected about me during my participation in this study will be stored on a password protected computer and that this information will only be used for the purpose of ethically approved research studies.
Name of participant (print name)……………………………………………………………………………
Signature of participant……………………………………………………………………………………….
Date……………………………………………………………………………………….. ………………….
Name of researcher (print name)……………………………………………………………………………
29
Signature of researcher ……………………………………………………………………………………….
Date………………………………………………………………………………………………………………..
30
Appendix D – Recruitment poster for use in Radian community café
31
Appendix E – Participant information sheet – Radian community café
Research Information Sheet v2
Project: Designing a new website to help people keep active with joint pain
Researchers: Paul Clarkson, Jo Adams, Ivo Vassilev Ethics number: xxx
We invite you to take part in a study
Please read this information before deciding to take part in the study. Please ask us any questions. Talk to others such as family or friends about the study if you wish. If you are happy to take part we will ask you to sign a consent form.
We would like to create a new internet-based resource, which will be helpful to people who suffer from joint pain. We would like to find out about what is good and bad about two current websites called My Joint Pain and Genie.
My Joint Pain is to help people manage their joint pain. Genie supports people to think about who and what helps them to manage their
health.
What is the project about?
Joint pain is a problem for a lot of people. It can have a big impact on their lives. Osteoarthritis is the most common cause of joint pain. People often think this is just part of getting older and nothing can be done.
Being able to do things yourself and involving others around you can help you to do the things you want to do and reduce your joint pain.
We would like to design a new internet-based resource that helps people to manage their joint pain better. To make sure that this works for people with joint pain we would like to find out:
- What you think is important to include in this internet-based resource. - What would make it easy to use.
Why have I been asked to take part?
You have been asked to take part in this study because you go to the Round About café and have joint pain and are 50 years of age or over.
What would taking part involve?
32
The project comes in two parts. If you decide to take part, we will ask you to sign a form to say you are happy to either:
o Take part in part A only o Or take in part A and part B.
You can sign up when the researcher is in the café (dates/times on the poster) or you can fill out a reply slip (attached to this information sheet). The researcher will then call you and answer any questions you may have. You can also telephone or email the researcher using the information at the bottom of this sheet.
You can take this information away and talk to anyone about the project. It is up to you whether you take part or not. You can have a friend, family member or carer with you during part A or part B if you
wish. The first ten people who sign up for part B will be chosen. Unfortunately, we cannot
take more than ten.
Part A
This will be held at the Round About Café on the day of the project and we will ask you to do three things:
4. We will ask you to answer a few questions about yourself. We can help you to do this if you wish. We will then ask you to look at a website called My Joint Pain for 20 minutes and think about what you like and dislike about it. We will give you paper and a pen to note down your thoughts. We will be around to help or answer questions.
5. We will then ask you to look at another website called Genie with a member of the team and two other people for 25 minutes and think about what you like and dislike about it.
6. We will then ask everybody taking part at each session to join a group and say what you thought of the websites. We will put the websites on a screen so you can point things out. This will take up to 45 minutes. We will record everyone’s voices to make sure we don’t miss anything.
Part B
Part B will happen about 8-10 weeks after part A.
We will ask you to look at the new resource that has been developed and let us know what you think. We will do this at the Round About Café or at your home if you prefer. This will be on a date of your choice. We will ask you to talk through your thoughts as you use the resource. We will record your voice to make sure we don’t miss anything.
We will use what you tell us to improve the new resource. If you are happy to, we will ask you to look at the new resource again. This will be on a date that is best for you.
Are there any benefits in my taking part?
33
We are offering a £5 gift voucher as a thank you for being involved in part A and another for taking part in part B. The new resource may also be useful for you to self-manage your joint pain. We hope this may help others in the future.
Are there any risks involved?
It is not likely that there will be any risks to taking part. Taking part will not affect any other appointments you have in the NHS. You will not
need to stop using anything else that you find helpful. If you find any part of the project upsetting, we are happy to answer questions or
provide support. If you prefer support from the community group leader, we will ask them to help.
Will my taking part be confidential?
For part A you will be part of a larger group where you may know others in the group. We will ask everyone taking part not to share any information about others in the group with anyone else.
For part B you will be giving your thoughts to one of the team, which will be kept confidential.
The only reason for not keeping the information confidential will be if you are considered to be a risk to yourself or others.
As you and others are able to invite a friend, family member or carer to come with you, there may be other people around who are not taking part directly. We will also ask them to keep the information confidential.
We will not use your name on any reports. The information you give us will be locked away and only the people working on the
project will see it.
What happens if I change my mind?
You can leave the project at any time and do not have to give a reason. If you choose to leave this will not affect anything else. You can decide what we do
with any information you’ve given us already. You can ask for the information to be destroyed or kept.
What happens if something goes wrong?
If you have a concern about the study please let us know. If you want to talk to someone who is not working on the project or if you would like to complain then you can contact:
The Research Governance Office (Address: University of Southampton, Building 37, Highfield, Southampton, SO17 1BJ ; Tel: +44 (0)23 8059 5058; Email: [email protected] .
Where can I get more information?
Please let me know if you have any questions. I can be contacted by email or telephone.
34
Paul Clarkson (Research fellow)
Telephone: 02380 597909
Email: [email protected]
Thank you very much for taking the time to read this information
35
Appendix F – Indication of interest form (Reply sheet)
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