By Jessica Bone, on 7 March 2017
This was our seventh working group meeting and the first since last summer. Our research team, experts by lived experience, and clinicians from Camden, Islington and Barnet all came together to review our progress so far. Since the working group meetings in the development phase of the study, a team of three Community Navigators has been recruited, completed training and started preliminary testing of the programme of support. The Community Navigators wrote a blog on their experiences of training with us.
We started this meeting looking at feedback from our Community Navigators and some of the participants that have taken part so far. In total, eight participants have tried out support from a Community Navigator and have had between one and seven sessions. Feedback was very positive. Participants particularly enjoyed their meetings with the Community Navigators and receiving personalised guidance about new things to try or places to go. Although it is quite early to tell, people said they were feeling a little better, were getting out more and some had increased confidence. However, they did have concerns about maintaining this progress after their Community Navigators’ support ends and some found it challenging trying new things.
Our Community Navigators had lots to say about the study so far. They had a clear understanding of their role and what they are trying to achieve, and have really enjoyed getting to know participants. As with all roles, they did identify challenges, particularly with making as much progress with people as they’d hoped. We discussed some strategies to overcome these challenges, one of which was to have some top-up training on using a solution-focused approach. Together with the guidance received in supervision, which the Community Navigators really valued, this should help the Community Navigators continue to develop the support they are able to offer. The Community Navigators also thought the mapping and goal setting tools developed by the working group (pictured above) were helpful to use in their meetings.
So, now that we’ve had some feedback, what are the next steps?
One of the things that came out of the interviews was that some participants didn’t self-identify with feeling lonely. This could be an issue as part of what we’re trying to achieve in this study is to help people feel less lonely. However, the questionnaires that people completed at the start of the study indicated that all participants were experiencing some level of loneliness, even if they didn’t describe themselves using this label. As the working group felt that the people who would benefit most from the support of a Community Navigator would be those with some feelings of loneliness, we’ve decided to ask people to complete a brief loneliness scale before we offer them the chance to take part in the study. We also realised that we need to try and describe this programme of support as clearly as possible to potential participants, so that they are on-board with its aims. We’ve developed a participant guide (pictured above) which we hope will help people to understand what the Community Navigator programme is all about.
If you’ve been following the blogs on the development of the Community Navigator programme, you’ll know that we tried out running the Groups4Health programme for those taking part in the pilot phase. This a group intervention, developed in Australia, which provides people with the knowledge, skills, and confidence to increase their social connectedness, and in particular, their group-based social identifications. You can read more about it on their website. The Community Navigators who facilitated these groups really enjoyed them and told us how interesting they were. Unfortunately not as many participants as we’d hoped made it to these group sessions. We used this working group meeting to discuss why we thought this was, and how we can increase group attendance in the next phase. We then split into smaller groups and discussed four options going forward:
- A brief version of Groups4Health, covering the material in three sessions
- Skills workshops on motivating yourself and maintaining positive and healthy relationships
- Meetings to introduce the programme and to share interests and experiences of community navigation
- No group, but linking people up who have shared interests
Let us know your thoughts on which you would choose!
After lots of debate weighing up the pros and cons of the different options, we all thought that number 3 would work best, but that we should also build in the best parts of the other options. We decided to organise at least two group meetings – one during the first half of participants’ support from their Community Navigator, and one towards the end of the programme. A third session may be added, depending on whether people want it. Attendance is optional but Community Navigators will encourage and support everyone to join in.
The group will provide opportunities for people to meet, chat about the programme and their progress, and share any helpful resources and experiences. The group will follow the principles of our programme with a socially-focused person-centred approach; each meeting will have a loose agenda tailored to the needs of those taking part. The working group also pointed out the importance of having cake at these meetings, so refreshments will be provided!
We’re all looking forward to our next working group meeting, where we’re going to use the feedback gathered so far to update the programme’s Theory of Change.
Sadly one of our Community Navigators is moving on to a new full-time job at the end of March, but we are currently recruiting a new Navigator to join our team.
You can share your thoughts with us on Twitter or get in touch with Jess by emailing firstname.lastname@example.org. You can also find out more about the study on our main webpage, https://www.ucl.ac.uk/psychiatry/research/epidemiology/community-navigator-study/.
By Noorjaben B Monowari, on 25 November 2016
In a new systematic review featured on the front cover of Nature and amidst a rapidly changing global political landscape owing to legalization, the availability of synthetic analogues (commonly termed spice), cannavaping and an emphasis on the purported therapeutic effects of cannabis, Dr Bloomfield and colleagues review the complex effects of THC, the main ingredient in cannabis, on the brain’s reward system. They describe the ways in which these may alter brain function to increase the risk of mental health problems. Owing to the complexity of the cannabinoid-dopamine interactions that take place, there is conflicting evidence from human and animal studies concerning the effects of THC on the dopamine system. Acute THC administration causes increased dopamine release and neuron activity, whereas long-term use is associated with blunting of the dopamine system. and provide a framework for future pharmacology research they argue must examine the long-term and developmental dopaminergic effects of THC.
By Jessica Bone, on 10 November 2016
The training for the Community Navigator programme took place throughout September 2016. The five day itinerary was thoughtful and comprehensive, and we gained insight into the rationale behind the research. During the first day, there was time to discuss previous research findings and the evidence base which highlights the adverse health impact of loneliness and social isolation. This provided a useful theoretical overview and rationale for the study, as well as our role within it. Building on this, we all reflected upon the differences between emotional and social loneliness and considered possible barriers to people identifying as being ‘lonely’ – such as a feeling of being stigmatised. We also acknowledged various social, cultural and political factors which can contribute to exclusion, isolation and loneliness.
Our training programme incorporated a visit to Wellbeing Enterprises in Runcorn, a project which undertakes social enablement and engagement work with people referred via their GP. All three of us found this an interesting and informative day. It was particularly useful to go out and shadow some of the team members working there. We met several of the people referred, observed meetings in GP surgeries and generally gained a more in-depth understanding of their role and how the project supports people to build social connections.
On return to UCL, we considered the Community Navigator role and how we might engage people referred, including the importance of respecting their knowledge and experiences, and being mindful of people’s preferences in activities and social connections. One of the key challenges identified was how we can best keep a clear social focus without replicating clinical support already provided or becoming involved in other issues like housing. Without a clear focus, the role may be perceived as offering a counselling or befriending service or having a generic support function. We agreed that explaining the Community Navigator role clearly at the outset to people will be vitally important for managing expectations. In the time-limited role (ten sessions), planning work carefully and developing a collaborative understanding of the aims will maximise benefits and avoid potential misunderstandings. Accordingly, we discussed the goal setting tools and ways in which these could be used to maintain focus and chart progress.
As we are based across Camden, Islington and Barnet, we utilised some of the training to consider community resources available and how we can identify and explore these resources in more depth. We thought about resources that we already know about, and put together the mind map shown below. Locating appropriate groups and activities which are welcoming and inclusive will be a key factor. It was agreed that checking out these factors and developing our relationships with providers is important, meaning that referrals can be made with greater confidence. This means people will be more likely to have positive experiences.
One of the training days focused on how Community Navigators could work with people to identify and define their social networks. We role played using the mapping tools developed by the research team and working group. It was agreed that these tools help to identify important relationships, places and activities for people and will provide a visual representation of their social networks. This will enable them and us to identify how to expand and build on existing connections and revisit previously enjoyed activities and interests. We discussed how, for some people, revisiting relationships from the past may cause some distress. We will need to manage this carefully and sensitively and, in some circumstances, support from the clinical teams may be necessary. Having experts by experience involved in this aspect of training allowed us to consider more challenges and dilemmas.
Finally, throughout the training programme, we discussed solution-focused approaches and the theories underpinning these. There was discussion regarding how this approach is a ‘good fit’ and consistent with the aims of Community Navigation. This includes the emphasis upon recognising and developing existing strengths and resources, ways of emphasising positive aspects of peoples’ lives and the focus on what is ‘going well’ in spite of challenges.
We all very much enjoyed the training. There was a good balance between information provision and discussion alongside interactive exercises, role plays and group reflection. This format enabled us to have input into the development of the Community Navigator role and what it might look like in practice. It was also very helpful to have input from clinicians from both trusts, Anna (Barnet CCT) and Rob (Camden and Islington CDAT team) who gave their time generously and shared their expertise in ways which were immensely valuable to us all. Thanks also to the wonderful supportive research team at UCL and McPin for their kindness, patience and good humour, as well as provision of lunch, snacks and copious amounts of tea and coffee!
What training do you think people need in a Community Navigator role? We’d love to hear your thoughts especially if there’s something essential that you think we’ve missed! Comment below or contact Jess via email@example.com. You can also find more information on our study website and follow us on Twitter @ucl_loneliness.
This blog was written by our Community Navigator, Jane Plimmer, with input from the other Navigators, Cecilia MacDougald and Zubair Matin.
By Jake Fairnie, on 28 September 2016
UCL Psychiatry’s Naaheed Mukadam was interviewed on TRT World for Alzheimer’s Awareness Month earlier this week. Watch it here (Naaheed’s section starts 6 minutes 46 seconds in):
By Jake Fairnie, on 16 September 2016
Research from the UCL Psychiatry Marie Curie Palliative Care Research Department has been reported on the front page of The Times, as well as by The Daily Telegraph and The Sun.
The study reveals that clinicians’ estimates are frequently inaccurate with a tendency to over-estimate rather than under-estimate survival.
By Kate C Fullarton, on 31 August 2016
Our sixth meeting – the final one in the development phase of the study – began with one of our researchers, Johanna, giving an update on the recruitment of the community navigators. We have recruited three community navigators and we wish them a very warm welcome to the team. We then had a quick look at a draft of the community navigator manual, which provides an overview of the study, the support programme and the community navigator role, and asked the group for feedback. We will be able to share the manual once it is finalised so keep your eye on our project news for updates.
We then turned our attention to the Theory of Change that we have been developing over the course of the working group meetings, through the evolving models, which you can see on our blogs from weeks 1, 2 and 3. The aim of a Theory of Change is to provide a visual description of the process through which the support programme leads to the desired outcome, in this case, a reduction in loneliness. This Theory of Change will develop through the study, as we seek feedback from the community navigators, people receiving their support, and other people involved in the study. Below, you can see the latest draft of our Theory of Change. What do you think? Does this capture how you think the community navigator programme might work?
One of our experts by experience then introduced the latest plan for the community navigator training. The community navigators will receive five days of training specific to their new roles. The planned training days are jam-packed and will be delivered by members of the research team, clinicians from the CCT and CDAT team, experts by experience and navigation experts from Wellbeing Enterprises. We also discussed the importance of allowing space for community navigators to reflect on their existing strengths, learn from each other, and guide us about what they want to get from the training, and we’ll make sure this is incorporated into the training.
The study’s project manager, Bryn, then asked the group if, and how, they would like to be involved in delivering the training. Ideas included input from clinicians about the client group and their social needs and pairing community navigators with members of the working group with lived experience of mental health problems to try out some of the components of the programme, such as the mapping exercise and goal setting. This would give community navigators an opportunity to practice their skills and to get insights from the experts by experience about what they think works well. It was also suggested that providing the community navigators with techniques to help overcome setbacks should be incorporated into the training, and we’ll be adding this before training begins in September. We then split into groups to think of scenarios to use throughout training, which will help the community navigators to think through exactly how they would go about supporting a range of people with different interests and needs.
After a much needed coffee break, we came back to revisit the mapping tool, which we looked at initially in week 3. Johanna asked the group to discuss the following questions regarding the mapping tool, which is shown below:
- Are we just mapping people or people, places and activities?
There was general consensus that people, places and activities should be included in the mapping process.
- What is the time frame we are mapping?
The group agreed it would be useful to include present, past and future relationships if they are relevant to the individual the community navigator is supporting. A member of the group suggested that the community navigator begins the mapping activity by asking about present relationships, but considers past and future in their approach.
- Are we rating positive/negative impact of people/places/activities like the McPin Foundation do with their Wellbeing Maps or are avoiding rating and mapping closeness?
There was general consensus that it would not be useful to categorise relationships as positive or negative in this study as we are adopting a solution-focused approach, and that neutral colours should be used throughout the document to ensure that this does not happen.
- When would the tool be used? Just at the beginning or throughout or again at the end?
The group suggested that it might be interesting for the participants to compare a map completed at the beginning of the study to their map at the end. However, most importantly, people felt that the map should be used flexibility, depending on what the individual thought would be useful for them.
We then also returned to the goal setting tool, which we looked at in previous meetings. We considered four example tools, produced by our researcher Kate, which were inspired by Wellbeing Enterprises’ ‘Five ways to Wellbeing’ pledge tool. The ‘My Connections Plan’ shown below, with some minor changes, was the group’s preference. This was because it includes a section on ‘Strengths and resources to help me’ to remind people of their assets, as well as a ‘Time frame’ section, to give people an end-point to aim for with each goal. Can you think of any ways that you’d improve this plan further? Get in touch and let us know!
After a very productive meeting we briefly reflected on how much we have achieved as a group over only a few months. We also said goodbye to our research Kate, and we look forward to welcoming Jessica Bone on 1st September. Our next working group meeting will be early next year, and we expect the community navigators will join us to feed back on what it is actually like working in the role. Now, it’s time to finalise the manual, train the community navigators and recruit the participants for community navigators to work with!
Get in touch with Jess via firstname.lastname@example.org if you have any thoughts about the study or follow us on Twitter @ucl_loneliness.
By Kate C Fullarton, on 30 August 2016
Like our fourth meeting, the fifth meeting was about coming together to find out people’s views on key components of the support programme. Specifically, in this meeting, we’d spend some time discussing two areas to help us work out what direction to go in: 1) types of mapping and goal-setting tools and 2) the use of groups.
We started by looking at a mapping tool, which has been used by the McPin Foundation in previous research studies on Wellbeing and Connectedness and could be used by a community navigator to start conversations about the social world with the person they are supporting. What people felt was really useful about this mapping tool is that it produces a visual representation of a person’s social connections. It shows who is in the person’s life, the closeness a person feels towards those in their social network, and the links between people in their network. There’s also the possibility that it can be used not only to map people in a person’s network, but also the places and activities which are so important for a sense of connection to the community.
Following this discussion, we split into groups for an exercise which really allowed people to show their creative sides. Each group was asked to design a goal setting tool which would support people to set goals around improving community connections and reducing loneliness. Ideas varied around the room, with some groups, focusing on goals related to people, place and activity, whilst others focused on specific actions, such as reconnecting, new connections, activities and identity. There was, however, definite agreement that goals could cover different time periods, such as short, medium and long-term goals. Over the next few weeks, we’ll be coming to a decision about the tools we’ll use and will use feedback from the preliminary trial stage to refine whatever methods we decide upon.
We then recapped some of the information from session four about whether we create groups for participants to attend as part of the support programme, particularly focusing on the Groups4Health option. Through a lively discussion of the pros and cons of including this alongside the support from community navigators, an agreement was reached that given its promising evidence base, it is worth trying out in the preliminary trial, to see how it fits alongside the other elements of the community navigator support, and most importantly, whether it is something that participants find helpful.
To get us thinking about the mechanisms through which the community navigator support programme may reduce loneliness for people, we completed an exercise in small groups. Alongside each of the three components of De Jong-Gierveld’s (2011) framework for alleviating loneliness: 1) Increasing the use of support available from existing relationships 2) Developing new social connections and 3) Changing your thinking about current social relationships, groups wrote which elements of the planned navigator support they felt would impact these components.
This work will contribute to a Theory of Change that we’ll be developing which will provide a visual description of how and why the different aspects of the community navigator programme leads to desired changes being realised.
Next we spent some time considering the community navigator’s training and supervision. The group first considered what types of training the community navigators should have. We will post our ideas for training in the next few weeks. What do you think? Is there any essential training that you think navigators need?
Moving on to supervision, there was clear consensus that we needed to get this right and there was discussion about whether twice monthly group supervision was sufficient. This is definitely something we’ll be in discussion about with services involved in the study – the Camden and Islington Complex Depression, Anxiety and Trauma (CDAT) team and the Barnet Complex Care Team (CCT), as well as the members of our working group from these services.
To finish off the meeting, we spoke about the fast-approaching interviews for community navigators. We had a look at the interview questions and made some final tweaks to ensure we get a clear picture of candidates’ skills and approach. It’s going to be a really interesting process, with candidates first responding to scenarios posed by a panel made up of members of our working group with lived experience of mental health problems, followed by a more formal interview process with a panel of researchers and practitioners. This really shows the coproduction approach we’re taking to this study in action.
At our next meeting towards the end of July, we’re hoping to have completed a draft manual for the community navigators, ready to get people’s thoughts on. We’ll also be looking at the outcome measures to make sure these are capturing important aspects of the participant experience and are suitable to use with people. Plus they’ll be updates on the community navigator roles and the people we have in post. It’s definitely an exciting time as we near the start of people receiving support from the community navigators.
By Kate C Fullarton, on 30 August 2016
Over the past few meetings we have had the opportunity to listen, to think and to ask questions: we’ve heard from experts working to reduce loneliness and isolation, we’ve heard about the latest research evidence and we’ve learnt from each other’s experiences and expertise. Coming into our fourth meeting, we knew we would soon have to start making key decisions about the community navigator programme. The focus of this meeting was to discuss two main questions:
1) Should we set up our own group as part of the support offered to service users, and if so, what kind of group?
2) How is the navigator support aiming to change service users thinking around their social relationships?
One of our experts by experience introduced the first question. We divided up into groups to discuss whether navigators should be linking people in to existing community groups, or whether we include an optional group element in addition to the ten community navigator sessions. We also were asked to discuss what type of group we think could be most beneficial for people, with five options suggested based on ideas from previous meetings. These were:
- Wellbeing groups – for example, mindfulness, stress reduction, relaxation
- Activity groups – for example, arts and craft, singing, walking, sports
- Reflection and support – a less structured group where people could share their experiences of the support and how they’re finding working towards their goals
- Collective event – an event or activity organised by people towards the end of their support from a community navigator
- Groups4Health – a five week group programme targeting loneliness and social isolation through strengthening people’s social identities, that has been developed and trialled by researchers in the Social Identity and Groups Network at The University of Queensland.
As we went round the room to give feedback, it was clear that people thought it would be useful to offer a group, however, ideas about what type of group were more mixed. Some people felt that Groups4Health was the best option, as it is an established programme with a growing evidence base and complements the work that the community navigators will be doing on a 1:1 basis. Other people felt that an activity group would be best, although they thought it might be difficult to find a group to match everyone’s interests, to keep the support person-centred. For this reason, some people felt that a reflection group or collective event would be best, to allow group members to come together and set their own agenda. What are your thoughts? What type of group do you think would be most useful for people?
After a quick coffee break, we turned our attention to thinking about the psychological component of loneliness. Researchers De Jong Gierveld and colleagues (2011) propose three ways that programmes reduce loneliness:
1) Increasing use of the support available from existing relationships
2) Fostering and enabling new social connections
3) Helping people to change thinking about their social connections
We know our community navigators will be focusing on 1) and 2) by working to enhance social support from existing relationships and increasing opportunities to create new social contacts, so this discussion was to get people’s thoughts on the extent to which our navigators should be explicitly focusing on 3): helping people to change thinking about their social connections. We were asked to discuss the potential advantages and disadvantages of two approaches:
- Solution-focused approach
Community navigators would be trained to be focused on identifying the next step that the person they are supporting could take to achieve their socially-oriented goals, equipping community navigators with the skills to look for positive solutions, rather than concentrating on the past and what is preventing the person from moving forwards. This appealed to people because it was consistent with the Wellbeing Enterprises approach that we heard about in Week 2, continually focusing on the ‘next step’. The question raised, however, was whether this approach pays enough attention to the research evidence, albeit limited, which suggests that programmes which address our thoughts about the self and relationships are effective at reducing loneliness, when compared to programmes that just focus on social participation.
- A targeted, individual approach
Community navigators would be trained to look for opportunities to help service users reappraise thoughts about relationships and barriers to social engagements, using tools such as motivational interviewing, basic cognitive behavioural therapy (CBT) and social skills training. The advantage of this approach is that it goes beyond increasing social participation to address thoughts and feelings around loneliness, which is after all a subjective state and can exist even if you have social contact. The drawback of this approach, however, is that community navigators could end up focusing more on people’s mental health, than on their social world, which goes against the purpose of the role.
From the group discussion it was clear that people felt that using a solution-focused approach was most appropriate, and though community navigators may be ‘psychological minded’, they should be clear that this is not psychological support. Community navigators should be focused on improving the person’s social networks and community connections, rather than changing cognitions. What do you think? What role should community navigators play in changing people’s thinking about social relationships?
With the details of the programme of support getting somewhat clear, and decisions starting to be made, it is an exciting time on the study. We have recently shortlisted candidates for the community navigator roles and will be interviewing shortly. We were delighted by the number of applicants, showing this is a role that people feel is important and worthwhile.
At the next meeting we will return to these big questions and try and get creative as we plan what mapping tools and goal setting tools navigators can use with participants. In the meantime if you have any thoughts or questions about the study, or would like more information, contact Kate via email@example.com or @ucl_loneliness.
By Kate C Fullarton, on 17 August 2016
The third meeting started with reflections on our last meeting – with discussion of Wellbeing Enterprises central to the discussion. Key thoughts of group members included how effective simple questions like ‘What is most important to you right now?’ can be, the importance of making programme materials clear and visually appealing and further consideration of the merits of short, focused, 45 minute goal-setting sessions. Perhaps the most lasting impression was the importance of community navigators having an infectious ‘can do’ attitude.
In sharing our thoughts, it is clear that we all want to create something that is flexible, person-centred, and speaks to the needs of those who feel isolated in a way that is helpful and empowering. To get us thinking further about how we might achieve this, we heard from Peter Bates, who is an Associate for the National Development Team for Inclusion working to link people with disabilities, and people with mental health needs, in to their communities.
Peter spoke about the importance of helping people move beyond mental health systems, to create an identity which isn’t based on having a mental health problem, but instead draws on people’s talents, strengths, and meaningful relationships with people around them. He spoke about three elements that can prevent inclusion:
The individual – for example whether or not a person feels confident or safe enough to be a part of their community, or whether they have the necessary financial and practical resources
The community – whether the community is welcoming and makes appropriate adjustments for people with additional needs
The mental health system – the extent to which mental health services believe that people are capable of achieving things such as returning to work and other goals, and the extent to which services give people opportunities to try things out
He got us all thinking by reminding us of the importance of the community. We often focus on ‘fixing’ the individual, but at least as important is that the community is inclusive. This struck a chord with members of the group, who gave examples of how social isolation can arise if places are unfriendly, or because they are difficult to access. There was agreement with Peter that it would be important for the community navigators to become skilled at finding out the ‘feel’ or ‘ethos’ of a place.
Peter went on to speak in more detail about what it means to be included in a community. He suggested that there was fundamental difference between being visible in a community, for instance, going for a coffee with an occupational therapist, and actually being part of that community. Though services may support people to have a community presence, they may be less equipped to support people to form meaningful and sustainable relationships within their communities. This was a useful reminder of why the community navigator roles may be so important.
The discussion became particularly animated as Peter introduced the ‘Inclusion Traffic Light’ as a framework to use when thinking about how the navigators can encourage genuine community inclusion:
However, some members of the group felt it was really important to highlight the value of people making friends within services, and how useful these friendships can be for support. Others, however, felt that where possible, aiming to have at least some ‘green’ involvement in the community was positive and should be encouraged. Peter reiterated that this is just a framework and acknowledged the value of all of these types of activities, the purpose of this framework is to serve as a reminder of the difference between involvement and wider community inclusion.
Bringing it back to the community navigator project, we considered how these ideas might impact the design of the support programme, specifically, the decision about whether we set up our own groups for participants to attend, or whether the focus is on supporting participants to attend existing community activities. On the one hand, focusing on groups and activities that are already running in the community may increase the likelihood that community navigators support people to engage in ‘green’ contact with others in their community, and it is likely to be more sustainable, as these groups or activities will continue to run after the research trial is complete. However, for some participants, who have long-term anxiety and/depression, being around people who been through similar situations may help them to feel confident to interact and form relationships. This could be the first steps towards building a less lonely and more connected life. What do you think? Should we set up our own groups? If you do, what sort of group should it be? And where should the groups take place? Let us know your thoughts below!
Next, we heard from one of the members of our group, who works at the Complex Depression, Anxiety and Trauma (CDAT) service in Camden and Islington, about the challenges that people accessing their service commonly face with social engagement. These ranged from practical considerations, such as money, travelling by public transport and availability of activities, to factors to do with symptoms, such as high anxiety, low motivation and energy and beliefs about other people, for instance, that they won’t be welcoming and they will be judgemental. Key, was a lack of confidence – about what to say and do around others, about not being good enough at the activity, about what to reveal about themselves and their mental health problems, and the feeling that others won’t want to be around them or be friends with them. Once more, hearing this context, made us step back and consider how we make the community navigator support relevant to the people we are designing the programme for, so that it has the greatest likelihood of having a real impact on reducing people’s loneliness.
To finish the session, we completed an exercise in which we mapped out how ten sessions could be used by the community navigator and participant. The model below illustrates our current thinking:
People had a clear sense of what the first three sessions would involve: the navigator and participant getting to know one another, goal setting and producing a plan about how these goals could be achieved. It was felt that later sessions needed to be more fluid, to take into account different goals, interests and progress. Nevertheless, there was agreement that these sessions might involve the community navigator supporting the person to choose and access activities, attending activities alongside the individual and after the activity, discussing how it went. The last couple of sessions would prepare for the ending of the community navigators support, focusing on reviewing progress and perhaps setting some further goals which could be completed independently, to sustain the changes made.
Next week we will look specifically at three key decisions: 1) whether we set up groups as part of the study, and if so, the form these would these take 2) the psychological approach used in the study and 3) the use of mapping and other tools. Looking at the model so far, what do you think would work best? Let us know your thoughts below, or get in contact with Kate via firstname.lastname@example.org if there’s anything else you want to know.
By rejutal, on 30 June 2016
Lewis Buss, now in the final stages of his medical training joined Dr André Strydom and the LonDownS Consortium to investigate the prevalence of intracerebral haemorrhage (ICH) in people with Down syndrome.
ICH in Down syndrome is an interesting phenomenon: Down syndrome is nearly always caused by a triplication (rather than the usual 2 copies) of chromosome 21. The chromosome contains a gene called amyloid precursor protein (APP) which drives amyloid beta production. People with Down syndrome are extremely prone to developing Alzheimer’s disease and a big part of this is thought to be due to a higher dosage of APP. Amyloid fragments aggregate in functional tissue in the brain (the characteristic plaques seen in Alzheimer’s disease) but also in the cerebral microvasculature. It is this vascular amyloidosis that is associated with ICH.
In the review, Lewis and his colleagues describe how although people with Down syndrome are at increased risk of ICH, this risk is not so great as in people who have three copies of APP (dup-APP) but not of other genes on the chromosome. The most interesting part of this paper comes during their exploration of pathophysiological mechanisms in people with Down syndrome and those with dup-APP. Is there a a part of chromosome 21 which may actually protect people against ICH? Read the paper to find out!
Lewis had this to say about his work:
“I did my undergraduate psychiatry placement in learning disability and general adult psychiatry. The experience was fascinating: speaking to the patients, the long ward rounds, the legal and ethical discussions and the philosophical questions about psychiatry that even this short placement brought up. One of the consultant psychiatrists I was attached to was Dr Andre Strydom, I was so enthused by the placement I thought I would ask him if he had any research projects I could get involved with. He proposed I did a literature review looking at a question that had been raised by a recent Nature Review they had written: are people with dup-APP more prone to intracerebral haemorrhage than those with Down Syndrome? And if so, why? The subject matter seemed fascinating and with cross over into general medicine.
The process of writing the paper was challenging as the subject matter is complex, but I had a lot of support from Dr Strydom and the other authors’ contributions.
While taking on this project was a lot of additional work on top of my MBBS it was absolutely worth it. I got exposure to research in a really exciting area of psychiatry, improved my academic writing skills and got to explore this fascinating question in a lot of depth.”