Poverty, pathology and pills: moral narratives and the medicalisation of distress

Lead Research Organisation: University of Exeter
Department Name: University of Exeter Medical School

Abstract

The provision of effective treatment and support for mental distress is a stated aim of the Department of Health and civil society organisations e.g. Mind. Yet despite a stated need to tackle health inequalities, current strategies e.g. Closing the Gap: Priorities for Essential Change in Mental Health (DoH 2014), frame mental distress as a psychological problem that lies within the individual concerned. This not only suggests that distress can be 'corrected' through medical treatment, but also masks the factors that often underlie the root causes of suffering e.g. poor living conditions, unemployment. At the same time, policies in place to restrict welfare support, and popular media e.g. Benefits Street, draw on moralising narratives that promote the idea that people are responsible for their own actions and circumstances. This research aims to explore how these moralising narratives impact on the ways that people in low-income communities perceive and respond to mental distress caused by material deprivation and social disadvantage, and to examine the impacts of this on their wellbeing. This will be achieved through in-depth research in two low-income communities in the South West, which seeks to understand: i) the way that moral narratives are defined and used or resisted in people's everyday lives in relation to mental distress; ii) the influence of moral narratives on people's decisions to seek medical support for distress; iii) how moral narratives manifest within GP consultations and influence treatment decisions and patient wellbeing; and iv) which responses to mental distress have the potential to effectively support vulnerable populations, and to inform ethical debates on the medicalisation of distress in a way that benefits patients, and assists practitioners and policy makers seeking to support low-income communities.

This 30 month programme of research consists of two linked stages:
1) 96 people from 2 targeted low-income areas will participate in focus groups to explore how moral narratives are defined and used/resisted in people's daily lives. Groups will be divided by gender and age to identify any differences across groups. Information collected in Stage 1 will provide informed contextualisation for data collection and analysis in Stage 2.

2) Secondary analysis of 60 video-recorded consultations will enable insight into the contexts in which GPs and low-income patients discuss mental distress. In-depth analysis of 30 consultations will identify how GP-patient interaction influences decision-making to prescribe/accept or withhold/reject treatment. Further insights will be gained through interviews with 10 GPs in the study sites and repeat interviews with 40 people from low-income communities who have attended a GP consultation for mental distress. The first interview will focus on the person's experiences of distress and the role of moral narratives in i) their decision to seek medical consultation, and ii) their responses to the treatment or intervention prescribed/accepted or withheld/rejected. The second interview will enable participants to reflect on their experiences of mental distress within the wider context of daily pressures e.g. poor living conditions, their decision to seek medical support, and the outcome of the GP consultation.

The research programme is intended to have strong and distinctive impacts for user groups by informing policy and practice regarding the development of effective, meaningful and non-stigmatising responses to mental distress in low-income communities. This will be achieved by advancing understanding of i) people's use/resistance of moral narratives of responsibility (why? when? how? where? with who?); ii) the relationship between moral narratives and the medicalisation of distress; iii) the ethical implications of prescribing antidepressants for distress induced by poverty/deprivation; iv) identification of GP-patient interactions that enable positive wellbeing.

Planned Impact

The project is designed to include key stakeholder's perspectives from the outset and to maximize opportunities for co-production of impact and knowledge exchange through engagement with low-income communities, healthcare professionals, policy makers and civil society organisations (see also Pathways to Impact):
Low-income communities: incorporating patient's perspectives to improve healthcare provision is a core priority of the UK government. Involvement of low-income residents on the project Advisory Board will ensure engagement and impact with low-income communities from the outset. An Introductory workshop in the study sites will enable local communities to negotiate ways of working and participating in the research that will increase the applicability and utility of the study. A Knowledge Co-Production workshop in each site once data is collected will enable communities to discuss findings and i) agree methods of dissemination to other low-income communities e.g. via national C2 network, ii) agree key findings and priorities to inform guidelines on good practice for health practitioners, iii) guide the focus and aims of, and share experiences and ideas at, a high-impact two-day Research-Policy Briefing Seminar in London alongside presentations by experts in the fields of social inequalities, mental health, and community wellbeing e.g. What Works Centre for Wellbeing, Joseph Rowntree Foundation, McPin Foundation.
Health professionals: identification of GP practice (relating to mental distress) that enhances patient wellbeing will be developed into guidelines on good practice for health professionals working in low-income communities. Health professionals will draw on their experiences to refine the guidelines at a Regional Practitioner workshop, and agree a dissemination strategy that maximizes their utility for the health sector. Participation in the workshop by local authorities charged with health provision e.g. Teignbridge DC & Plymouth CC, will ensure findings feed in to local health plans e.g. Devon Joint Health and Wellbeing Strategy. Networks developed during the project will lead to oral presentations at practitioner-focused events and regional clinical commissioning groups. Impact will be evidenced through changes to working practice amongst GPs that enhance wellbeing in low-income communities.
Civil society groups: valuable relationships will be built through networks of the project Advisory Board (AB) whose members represent key user groups and stakeholders (see Pathways to Impact for confirmed membership). AB members will provide ongoing feedback on the research to their organisations/communities, and develop networking opportunities with other potential user groups e.g. Mental Health Foundation, Young Foundation, Turning Point. User groups will be encouraged to contribute discussion and case studies to the project website, and will promote the research and its findings on their websites. Involvement in the Research-Policy Briefing Seminar will enable academic and user group networking and collaboration, and identify how research findings can be practically and effectively implemented to support low-income communities.
Policy: Joining up understandings of mental distress with the broader social and structural context in which they are experienced will provide key policy makers (with whom links will be fostered via the AB) e.g. Dept. of Health, Dept. for Communities & Local Government, Dept. for Work & Pensions, as well as the cross sector Mental Health Taskforce and public bodies e.g. Social Mobility & Child Poverty Commission, Fairness Commissions, with an evidence base to inform implementation of key strategies e.g. No Health Without Mental Health Implementation Framework (Centre for Mental Health et al. 2012). Internationally, findings will inform the WHO Europe Health 2020 policy to reduce health inequalities via Thomas's (PI) work with WHO on cultural determinants of health (see Pathways to Impact).
 
Title Community co-created film 
Description A film about lay experiences of distress directed and produced by community members in the study sites 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact The film highlighted mental stress experienced in the study sites and helped community members openly discuss having issues of stress and anxiety. This linked more people in to local peer support groups and also led to a further community member being recruited onto the project Advisory Board. This film has been used at a Advisory Board meeting where it generated considerable discussion amongst members from third sector, commissioning and practitioner backgrounds around biomedical and social models of mental health. It will also be used as the basis for health practitioner training on experience of distress within low-income communities. 
URL https://youtu.be/o30xL7HrK8g
 
Description Key findings include: i) Moral narratives around responsibility play an important role in influencing wellbeing amongst low-income groups. Moral narratives are prevalent in the media, but are also experienced in interactions with job centres, health and social workers, schools, and, albeit to a lesser extent, GPs. An important source of moralising comes from within the community itself. Most residents feel this judgement and shame has intensified in recent years and that this is linked to a hardening of attitudes against people in receipt of welfare support. People from low-income groups often change their behaviour to avoid judgement - one adverse outcome of this is that many people with children avoid services for fear of being judged through a category of 'risk' and having their children removed; ii) Most people seek medical help from their GP for poverty-related distress because they feel this will provide them with appropriate mental health support. However, many go to their GP because resource and service cuts mean there is nowhere else to go to get help. GPs in the study sites report that between 10-50% of their case load are experiencing social/structural rather than medical issues. Whilst diagnosis can be helpful for some, many people feel their distress is being overly-medicalised. This is particularly evident for those within the welfare system who need to provide medical evidence to legitimate their benefits claims; iii) GPs have limited options to offer patients experiencing poverty related stress. Antidepressant use in the study sites is high with almost all participants having been prescribed, and taken, antidepressant medications at some point in their lives. Long term use is an issue, with significant concerns raised over lack of opportunity for review within GP consultations. Many people feel they are 'fobbed off' with medications. GPs recognise this is a sticking plaster approach but feel they have few other viable options open to them, particularly given long waiting times for substantive therapy. Medications are generally considered an 'easier' and more realistic option for patients with complex needs, requiring less input, commitment and 'work' than IAPT; iv) people from the study sites face difficulties benefiting from IAPT. Self-referral is considered by GPs as a fist step to recovery, but is seen as a major challenge by residents. Given the challenges many patients feel even raising mental health issues within a GP consultation, there is a widespread feeling of rejection when a GP responds by handing over a leaflet for IAPT. For some patients, the giving of the IAPT leaflet constitutes a 'symbolic dismissal' that undermines and de-legitimises their concerns. Even when people attend IAPT, experiences are generally negative. • A range of problems and frustrations associated with IAPT are reported by both residents and GPs, namely: the waiting time for IAPT; the 'one-size fits all' approach with its rigid protocols and focus on cognitive behavioural therapy which fails to address or find solutions to the underlying problems of poverty-related distress; difficulty patients experience making an emotional connection with a counsellor; patient perception that counsellors over-emphasise and make assumptions about childhood trauma rather than focusing on the present-day situation; the set and limited number of IAPT sessions available, and the delay and lack of continuity if a patient returns for further support; the lack of joined-up provision between primary care, IAPT provision and third sector providers; an on-going disconnect at the interface of primary and secondary mental health care. All GPs interviewed for the study express particular frustration at the 'fractured' nature of mental health provision and the difficulties they face referring patients to appropriate secondary mental health care. Patients in one study site are commonly refused access to IAPT services if their needs are considered too high, and are then referred back to their GP rather than on to specialist care. This is demoralising for already distressed patients, and considered by GPs to be an unnecessary burden on their time and resourcing.
Exploitation Route Research findings will be used to inform mental health commissioning, particularly around IAPT. We are currently in discussion with mental health commissioners to ensure that the findings can feed into their plans for IAPT revision. We are also in discussion with Health Education England about using the project findings to develop training materials for GPs working in low-income communities, and we will be developing these materials in collaboration with HEE and residents from the study sites over the coming year.
Sectors Healthcare,Government, Democracy and Justice

 
Description Impact at community level including the initiation of community exchange visits and peer learning. Community development and ownership of film on experiences of stress. Community empowerment through participation on project Advisory Board. We are currently working with healthcare commissioners to ensure findings can be used to effectively revise mental health services in Plymouth. The project has already fed in to the redesign of the Plymouth Child Poverty Action Plan, with PCC now committed to involving vulnerable families in the co-creation and commissioning of services.
Sector Healthcare
Impact Types Cultural,Societal,Policy & public services

 
Description Contributing to re-design of mental health services in Plymouth
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Engaged Research Exploratory Award
Amount £4,385 (GBP)
Organisation University of Exeter 
Sector Academic/University
Country United Kingdom
Start 05/2017 
End 07/2017
 
Description Engaged Research Exploratory Award
Amount £2,930 (GBP)
Organisation University of Exeter 
Sector Academic/University
Country United Kingdom
Start 01/2018 
End 07/2018
 
Description MRC TRACES FUND
Amount £19,961 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 02/2018 
End 02/2019
 
Description Collaboration with National Institute for Mental Health, Czech Republic 
Organisation The National Institute of Mental Health
PI Contribution The methodology and narrative approach used in Destress has been of interest to partners at NIHM and WHO Europe who are looking to understand how cultural factors influence mental health and mental health reform.
Collaborator Contribution NIMH worked with the DeStress PI and WHO Europe to run a collaborate workshop on the cultural aspects of mental health reform in Central and Eastern Europe.
Impact A two day workshop on the cultural aspects of mental health reform in Central and Eastern Europe was held by the collaborators in Klecany, Czech Republic. This was a multi-disciplinaly collaboration involving: psychiatrists; psychologists; social scientists; historians; economists and focused on the value of using narrative, participatory and qualitative approaches to understanding lived experiences of mental health and mental health related policy making. The discussions from the workshop are being published as a WHO report (in press, due out March 2018). As a result of this work, the PI is also working with workshop participants from Belarus and Ukraine to develop further work on using narrative approaches to understand lived experience.
Start Year 2017
 
Description Co-production of newsletter with study site communities 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Co-development and production of community newsletters (x2) with residents in the project study sites.
Year(s) Of Engagement Activity 2017,2018
 
Description Collaborative workshops with low-income families and service providers to influence the formation of Plymouth's Chlid Poverty Strategy 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Building on relationships developed with local parents through the DeStress project and with the Children's Centre (run by Barnardo's) we ran a series of workshops bringing together low income parents, local service providers and Plymouth city council policy makers and commissioners to discuss the implementation of the city-wide Child Poverty Action Plan. As a result parents views and opinions were taking into account and the plan was reviewed, and PCC are committed to ensuring parents' voices are heard in future service plan developments. Also as a direct result of feedback from parents in the workshops Barnardo's have introduced two new parent drop-in sessions in two local areas to increase accessibility to their support services (Coffee and Craft session at Four Woods Children's Centre and Community Café at The Barn).
Year(s) Of Engagement Activity 2017
 
Description Community exchange visit 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Study participants or study members
Results and Impact Following the initial 2 meetings of the DeStress Advisory board, community members from the two study sites community members expressed a wish to get to know each other and to learn and exchange ideas around peer support groups. Three community members of the Advisory group from Plymouth and a Housing Officer from DCH, travelled to Teignmouth in September 2017 to meet various groups at the local Teignmouth hub - the Pow Wow café, (approximately 25 people in total). The Teignmouth community hosted this visit to meet key community leaders and the members of 2 peer support groups, Crafters of the Round Table (operating from the café, they have created an informal drop in that anyone can join that is a very popular peer support group for mental health). They also met with the Advisory members from Teignmouth - the Helping Hand Low Moods group to hear from the wider members how they started the group and their ingredients for success. The outcome of the day was that the Low Moods Group offered to come to Plymouth and to support the community in setting up their on version of a community support group, sharing all the experiences gained on their journey (detailed further in DeStress community newsletter).

This follow up support happened in November with six members of the Helping Hands groups offering support and mentorship to the gathering of eight people who had self selected to try and create their own support group
Year(s) Of Engagement Activity 2017
 
Description Creation of community networks 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Study participants or study members
Results and Impact The DeStress project team was introduced the Creative Minds Art Group in Plymouth via an Advisory Group member. In collecting stories for the newsletter to highlight effective peer support groups in the local areas the project attended the group to introduce the project and to ask if they would like to talk about their group for an article. The group agreed and in meeting them and understanding their plans to reach a wider audience, have connected them to Townstal Community Partnership group to share funding ideas for their group that could reach out to, and support more people with mental health issues.
Year(s) Of Engagement Activity 2017
 
Description Discourse and Rhetoric Group meeting at Loughborough University 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact The aim of this meeting was to present data from the project for a group of academics who specialise in conversation analysis and related methodologies. Outcomes included additional insights into existing analytic points, as well as the suggestion of new analytic points that could be pursued.
Year(s) Of Engagement Activity 2017
URL http://www.lboro.ac.uk/departments/socialsciences/research/darg/
 
Description Exeter Collaboration for Academic Primary Care (APEx) seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This was a presentation given as part of the Exeter Collaboration for Academic Primary Care (APEx) seminar series. The goals were to explain the research, solicit feedback on data, and to recruit interview participants.
Year(s) Of Engagement Activity 2017
URL http://medicine.exeter.ac.uk/media/universityofexeter/medicalschool/research/healthservicesresearch/...
 
Description Interview for BBC Radio Devon 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact Live interview on the BBC Radio Devon Janet Kipling afternoon programme discussing the topic of Stress. Interview covered the purpose of the research project and how stress impacts on low-income communities, resulting in discussion in the following phone-in debate.
Year(s) Of Engagement Activity 2017
URL http://www.bbc.co.uk/programmes/p039zh4c
 
Description Interview for ITN Productions 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Interview with ITN Productions for their broadcast of the New NHS Alliance Summit 2017 which led to requests for further information on the project, and follow-up meetings with third sector and health practitioners.
Year(s) Of Engagement Activity 2017
URL https://itnproductions.wistia.com/medias/jgqsh0wl1m
 
Description Presentation at New NHS Alliance Summit 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Plenary session presentation delivered to an audience of approx. 200 health professionals, policy makers, third sector organisations and patient groups which sparked questions and discussion around the role of antidepressant prescribing within low-income communities. The presentation also received significant interest on social media.
Year(s) Of Engagement Activity 2017
URL http://www.nhsalliance.org
 
Description Presentation at an Engaged Research workshop for community partners 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Gave presentation at a workshop focussing on Engaged Research attended by community partners including Exeter City Council, Exeter City Futures and various third sector organisations. Resulted in discussion of the mutual benefits of partnership between researchers and the local community and networking with key practitioners and organisations interested in involvement and dissemination of our findings.
Year(s) Of Engagement Activity 2017
 
Description Project stand at South West Academic Health Science Network social prescribing event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact We ran a project stand at the South West Academic Health Science Network social prescribing event, which sparked discussion and follow up work with policy makers and third sector organisations.
Year(s) Of Engagement Activity 2017