A healthy community
Why would someone living with a chronic condition fail to take their medication regularly? Professor Madelynne Arden (Sheffield Hallam University) said she often hears from people baffled by that. She said this encapsulates an important issue – people do not understand the complex factors underlying medication adherence. Arden has been working on ways to support people with cystic fibrosis, which affects around 10,500 people in the UK, to improve theirs.
In this condition, patients use a nebuliser to inhale antibiotics and mucolytics. As with many long-term health conditions, adherence is low. Technological advances, including microchips in nebulisers, have helped researchers and healthcare professionals start to understand why, when, and how adherence to medication might decline or increase. Having an objective measure of adherence such as this is important – self-reported adherence has been found to be around 80 per cent, while chipped nebulisers have revealed adherence to be around 35 per cent. Without true measures of adherence, Arden said, interventions to increase it may not be successful.
In developing an intervention to tackle medication adherence in cystic fibrosis, Arden and colleagues used a person-based approach – seeking feedback on earlier versions of a digital intervention from health care professionals and patients. The eventual intervention was trialled in research with 608 participants with nebulisers which could feed data to the patients themselves, as well as researchers and healthcare professionals. The control group carried on with their usual care.
Those in the intervention group took their medication as normal and had sessions learning about behaviour change with an in-person interventionist and in an app – this included things such as goal-setting, problem solving and building confidence – and could view their own nebuliser data. At the end of the experiment this intervention group had significantly higher medication adherence than the control group.
Since this time Arden and her colleagues have been working to train healthcare professionals to use this intervention, called CF Health Hub. They are also looking to extend its use into children and young people: Arden said a key aspect coming out of a trial of CF Health Hub with teenagers is a need to support parents to take a step back from treatment so children and can learn to self-manage their medication.
Cystic fibrosis centres in the USA and France have also shown an interest in adopting the intervention. A result of this has been the development of CF DigiCare as a way to use data gathered to help to make healthcare better for people with cystic fibrosis. The data from people who were happy to share it with researchers has revealed that half of adults with the condition are taking a third of their treatment – which is very different from the intervention trial’s results. Arden said this shows that research is based on a subsample of patients, in this case an engaged and adherent sample, and can miss the true picture in some cases.
Arden’s talk was titled It is unclear why adherence is so low if the condition is so unpleasant and life threatening, a sentiment she hears often. ‘Adherence doesn’t become easier just because the condition is more threatening. [In the terminology of the COM-B model of behaviour change] there's capability opportunity and motivation barriers, and I think a clear lack of awareness that that's the case – so part of our job is explaining this, and part of our job is addressing it.’
Pregnant in a pandemic
During the Covid-19 pandemic pregnant women were categorised as an at-risk group, and Dr Emma Anderson wanted to explore what effect this had on women in Bristol. In the PIP (pregnant in a pandemic) study she and her colleagues remotely interviewed 31 women in and around Bristol, aged between 24 and 48, who represented all levels of the Index of Multiple Deprivation.
The rules at the time of the interviews encouraged everyone to stay at home as much as possible and only to leave the house for shopping, medical reasons, and travelling to work if necessary. Anderson explored women’s experiences through the lens of the COM-B model of behaviour change. The women were all social distancing to the best of their ability; some were completely shielding and going beyond the recommendations. In terms of capability, women said they had a good knowledge of the guidance and were accessing credible sources of information; however, they felt there was a lack of clarity over what it meant to be in a vulnerable group.
The participants also spoke of being highly motivated to observe social distancing rules, thinking of their own and their babies’ safety. Some said that if lockdown was eased they would still observe social distancing. Anderson said fear was a major driver of the women’s motivation – many felt more vulnerable to catching Covid.
In terms of opportunity, the women felt they had lots of social support but also found the loss of social contact difficult (particularly if they were living alone). Many spoke of concerns about keeping themselves safe, particularly with work; some said they were considering taking early maternity leave or sick leave so they would not have to go into work; shopping was also a source of anxiety for some women.
As a result of this work Anderson and her colleagues, along with help from two midwives, two participants and a graphic designer, designed an infographic which covered some of the key concerns and questions raised during the course of the study. This was sent out to local NHS Trusts, with midwives receiving a more detailed report about the findings.
Digging deeper with metaphors
During the conference two separate researchers spoke of their use of metaphors to dig into experiences of health conditions, and the understanding of health-related concepts. Dr Jasmine Hearn worked along with linguist Dr Stella Bullo (both Manchester Metropolitan University) to explore the visual representations and metaphors used by women to describe their endometriosis pain. This condition causes tissue usually found in the womb lining to grow elsewhere in the body and affects around one in ten women. It causes pain which may be associated with the menstrual cycle, and is very often misdiagnosed – Hearn said people wait an average of 7.5 years before receiving a diagnosis.
Hearn ran focus groups with six women with the condition and gave them various materials to create a visual representation of their endometriosis pain, and also spoke to them about those creations. She is carrying out analysis on the words of the women and said they created artifacts which made their pain visible. Some included soft materials which had been sliced, and many represented a feeling of constriction with wire or Sellotape wrapped around softer materials.
Hearn said this was a novel, and potentially therapeutic, way of understanding and even changing illness representations. ‘There's value in recognising the unique and individual nature of pain and making the abstract more concrete for people.’
On the second day of the conference Dr Agata Wężyk (Bournemouth University) shared part of her PhD research which explored the metaphors people use when speaking about stress. She recruited 24 members of her local community and across six workshops asked them to build a LEGO model that represented their ideas of stress. Wężyk said each of the models was unique, representing stressors, resources, the experience of stress, or a combination of these. Some of the common domains reflected in participants’ models were a feeling of restricted motion, cluttered space, a lack of order and balance. Although stress was complex, the metaphors used showed a certain common ground or shared understanding of it. Wężyk said people think of stress in terms of distress, a lack of control or powerlessness and unmanageability.
The burden of Covid
As part of a UKRI NIHR study exploring the way people from Black and South Asian communities conceptualised Covid-19, Dr Tushna Vandrevala (Kingston University) shared some of the findings which explored the ways people in these communities felt about having a test for the virus. She highlighted the disproportionate burden of Covid on BAME communities due to an intersection between additional risk, thanks to higher exposure, and co-morbidities, lower socioeconomic status and issues of poverty.
Vandrevala interviewed 57 people from Black and South Asian communities between September and December last year and found several key issues. People spoke of feeling that the pandemic had highlighted their communities – both in terms of being more visible but also in being blamed for the spread of the virus. Many participants also felt a great deal of stigma relating to illness in general in their communities. Vandrevala said some felt illness was seen as a sign of weakness and vulnerability. As such people were keen to avoid a Covid diagnosis given the stigma surrounding it, so felt less keen to have Covid tests.
In general self-efficacy in the participants was low, but Vandrevala said there was an opportunity to harness community self-efficacy – many people spoke about testing as a way to avoid spreading the virus within their family and communities rather than as a way to protect themselves.
Vandrevala said Covid was seen as just another battle faced by ethnic minority communities, and small and inconsequential in comparison to other struggles these communities face. She said participants were less likely to engage in testing given the economic burden of potentially losing their jobs, or having their migrant status revealed through testing. There were issues of mistrust in the health system, with many speaking of fears of being treated differently or not being a priority, and mistrust in the government, with some highlighting the fact government brought in new restrictions the night before Eid.
The emphasis on race as a risk factor, Vandrevala said, had exacerbated blame, stigma and alienation for ethnic minority groups, and said there was a need to explore the wider social determinants of health without an emphasis on race. She added that any testing system that did not offer material support to encourage self-isolation was unlikely to be taken up in more deprived communities.
In another set of covid-themed papers, we heard from Meredith Schertzinger (University of St Andrews) on how shared identity as a runner was the strongest predictor of wellbeing among the identity variables of members of ‘Jog Scotland’ during lockdown one. Daniella Watson (University of Southampton) reported on the training of ‘supportive conversation skills’ in those dealing with patients and the public. These included more exploratory, discovery questions. ‘Empathy responses’ – ‘I know how you feel’, ‘in my experience’ etc – were found to be not enough on their own, risking turning the conversation away from the main person of interest. Leanne Tyson (University of East Anglia) investigated how adults diagnosed with asthma became more health conscious as a result of being identified as vulnerable. And Ruth Lamont (University of Exeter) reported that support groups for stroke survivors during the pandemic adapted surprisingly well, with implications for how we nurture long-term connections in remote groups.
The closing keynote was Professor Victoria Tischler’s ‘confessions of a transdisciplinary scholar’. She packed her presentation with examples from a career where she has ‘often felt a bit like a maverick’, using art as communication and intervention in areas such as identity and dementia.
Art can, Tischler showed, transcend language, for example with the self-portraits of William Utermohlen as his health declined. She took us into the ‘sometimes surreal world I experience working with people with dementia’, for example doors disguised as bookcases to provide an ‘exit diversion’. Tischler has, though, ‘learned never to underestimate the capacity and agency of those living with dementia’, including how this can be increased through, for example, the use of Boots the Chemist’s archive to trigger autobiographical memories through smell. A recent Culture Box study (www.cultureboxstudy.org) co-designed creative activities in care homes, and ultimately it’s this aim that shines through in Tischler’s work: to ‘work towards parity with participants’, to address ‘wicked problems’ through a ‘complex interplay of domains of knowledge’.
Impact ‘in a trice’
‘This is the most impressive thing I’ve seen us – you – do’, said Professor Marie Johnston (University of Aberdeen) in discussing a truly inspirational symposium on health psychology’s impact throughout the pandemic. Contributors discussed, in Johnston’s words, ‘what we do to make the science work’, beginning with Dr Roseanna Brady and Dr Eleanor Bull on practitioner health psychologists working together to support the frontline workforce.
Professor Chris Armitage (University of Manchester) showcased the development of a method for expert consensus; producing guidance quickly, yet in an evidence-based way which avoids mixed messaging. This ‘Template for Rapid Iterative Consensus of Experts’ generates health psychology guidance ‘in a trice’.
That tension, between doing good, slow, scientific research, and not missing the opportunity to have an impact on policy, was evident throughout the session. The pandemic has called for novel solutions, and several of these have stemmed from the Health Psychology Exchange (HPX) network: including Dr Tracy Epton crowdsourcing rapid reviews, and Dr Ellie Whittaker (North Yorks County Council) setting up a ‘Public Health Forum’ within HPX to share guidance on vaccine uptake.
In the discussion, Professor Lucie Byrne-Davis (University of Manchester) suggested the agility of the network was rooted in the fact that nobody was expecting to be paid, instead adopting ‘the Joe Wicks principle – we’ll do it for free, for now’. ‘That says something deeply sour about the systems we are working in,’ she added: ‘What is funded and why, and how quickly.’ Professor Angel Chater (University of Bedforshire) added that ‘what we’ve achieved is brilliant, but we need to normalise timescales in terms of what public health can expect. We have to convey the message that good quality can reduce costs later down the line.’
Back to the ever-insightful Professor Johnston, who agreed a focus now should be ‘who’s going to supply the money? But don’t let that divide you. And what are you going to take on next? But my main point is “bloody wonderful”.’
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