Measuring quality of life

Martin Webber‘s first blog was published on the new Social Care Elf today. It is a review of a paper on the measurement of quality of life of people with a mental health problem. The Social Care Elf blog is a new venture that Martin Webber was involved in setting up and is one of the many contributors to. It is designed to keep people up to date with reliable social care research, policy and guidance. The posts are written by researchers and experts in practice. They summarise and comment on the latest knowledge on social care, helping people to find the best evidence. The Social Care Elf blog can be viewed here. However, here’s a slightly longer version:


There are diverse ways to understand and measure quality of life. For example, the MANSA (Priebe et al, 1999) measures both objective and subjective indicators of quality of life across multiple life domains such as employment, leisure, finance, social, living situation, family, safety, health and life in general. By contrast, the EQ-5D (Rabin & de Charro, 2001) is a brief generic 6-item tool which asks about mobility, self-care, usual activities, pain/discomfort, anxiety/depression and overall health. EQ-5D is used across a wide range of health conditions and interventions to calculate a single score of health related quality of life on a scale where full health is one and being dead is zero. This is used to calculate Quality Adjusted Life Years, which are frequently used in economic evaluations of interventions in mental health services. Although they are both viewed as measures of quality of life, EQ-5D and MANSA are actually measuring quite different constructs.

Users of mental health services are concerned about the appropriateness of the EQ-5D as an outcome measure (Crawford et al, 2011). They argue that it is too brief to capture the full complexity of the concept of quality of life and it focuses on what professionals consider to be important rather than service users. Literature reviews have found that the EQ-5D, and similar measures such as the SF-6D (Brazier et al, 2002), are not appropriate for people with severe mental health problems (e.g. Papaionnou et al 2011), but they continue to be commonly used. Therefore, I welcome Connell et al’s (2014) study which explored mental health service users’ perspectives on the domains of quality of life which matter the most to them.


Connell et al (2014) conducted a small qualitative study of 19 people who are using mental health services. They recruited eight participants from community mental health teams and nine from a primary care psychological therapy service. Only seven were female and most were aged between 30 and 59, with only one aged below 30 and two aged over 60. None of the participants were in paid employment and most lived alone. Participants were interviewed by an experienced mental health service researcher using a semi-structured topic guide which focused on what the participant felt was important to their quality of life and on a synthesis of qualitative research the team had conducted (Connell et al, 2012).


The themes which emerged from this study – well-being/ill-being; relationships and a sense of belonging; activity; self-perception; autonomy, control and choice; hope and hopelessness; and physical health – mirrored those found in their earlier systematic review, although physical health was identified as an additional domain. However, they found that those with more severe problems spoke about things that took quality away from their lives, whereas those who had less severe problems spoke of things that added quality. This was particularly evident in the well-being/ill-being domain, which raises important questions about the measurement of well-being for people with severe mental health problems, which typically uses positively-framed questions.

In contrast to the findings of the systematic review, the participants in this study expressed concern not only about how they fit with society but also about how society fits with them. A sense of detachment from society and a lack of connection with people around them pose significant challenges to the mental health services which do not engage with the communities in which they are located.

The themes of ‘relationships and a sense of belonging’; ‘hope and hopelessness’; ‘autonomy’; and ‘self-perception’ mirror those found in a systematic review of the recovery literature (Leamy et al 2011). This suggests that there is considerable overlap in the concepts of recovery and quality of life. However, perhaps the most important finding of this study is that the widely used EQ-5D and SF-6D do not measure many aspects of quality of life valued by people with mental health problems. The themes of control; autonomy and choice; self-perception; belonging; and hope/hopelessness are not addressed by these measures and the measurement of ill-being and well-being is inadequate.

Strengths and limitations

This was a well-conducted study and the researchers were explicit about what they did. This lends it credibility and gives me confidence in their findings. However, it was a small study and they did not achieve their desired sample of between 24 and 30 people. They were unable to recruit women with psychosis or people with Obsessive Compulsive Disorder. They reported that they had achieved data saturation, which suggested that they did not need to recruit any more participants. However, we know nothing about the socio-economic or cultural diversity of the sample, so the findings should be taken as largely indicative rather than definitive.

Their data were analysed using framework analysis (Ritchie and Spencer 1994) as this permitted both a priori and emergent themes. Their a priori themes emerged from their systematic review so it is perhaps not surprising that their overall results did not differ substantially from this review. If they had adopted a more grounded approach to their analysis, it is possible that different themes may have emerged. However, they asked two independent researchers to code three transcripts and develop their own themes. That these themes were not substantially different from what the authors found indicates that their approach was likely to be reliable.

The standpoint of the researcher in qualitative research can be influential in determining the outcome of a study. I am therefore left wondering if the findings would be different if the research was conducted by an interviewer whose quality of life had been affected by mental health problems.


This study is an important reminder to mental health service researchers like me that it is important to use appropriate outcome measures when evaluating the effectiveness of interventions. We should pay attention to whether or not people with lived experience of mental health problems were involved in developing them or that they measure what is relevant to them.

This study identified seven domains of quality of life:

  • well-being and ill-being
  • physical health
  • control, autonomy and choice
  • self-perception
  • relationships and belonging
  • activity
  • hope and hopelessness.

“These domains should form the basis of the future development of measures to address quality of life from the perspective of people with mental health problems” (p.20).

This study has an important message for mental health social workers and other practitioners in mental health services. Quality of life is multi-dimensional and people with mental health problems value different domains, and aspects within them, at different times according to the severity of their problems. If the domains of quality of life identified in this study are used as goals of mental health interventions, it might help services to become more recovery-oriented and focused on what matters to their users.


Brazier, J., Roberts, J. & Deverill, M. (2002) The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21: 271-292

Connell, J., Brazier, J, O’Cathain, A., Lloyd-Jones, M. & Paisley, S. (2012) Quality of life of people with mental health problems: a synthesis of qualitative research. Health and Quality of Life Outcomes, 10: 138

Connell, J., O’Cathain, A. & Brazier, J. (2014) Measuring quality of life in mental health: are we asking the right questions? Social Science & Medicine, 120: 12-20

Crawford, M., Robotham, D., Thana, L., Patterson, S., Weaver, T., Barber, R., Wykes, T. & Rose, D. (2011) Selecting outcome measures in mental health: the views of service users. Journal of Mental Health, 20 (4): 336-346

Leamy, M., Bird, V., Le Boutillier, C., Williams, J. & Slade, M. (2011) A conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. British Journal of Psychiatry, 199: 445-452

Papaionnou, D., Brazier, J. & Parry, G. (2011) How valid and responsive are generic health status measures, such as the EQ-5D and SF-36, in schizophrenia? A systematic review. Value Health, 14 (6): 907-920

Priebe, S., Huxley, P., Knight, S. & Evans, S. (1999) Application and results of the Manchester Short Assessment of Quality of Life (MANSA). International Journal of Social Psychiatry, 45 (1): 7–12

Rabin, R. & de Charro, F. (2001) EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine, 33: 337-343

Ritchie, J. & Spencer, L. (1994) Qualitative data analysis for applied policy research. In Bryman, A. & Burgess, R.G. (eds)Analysing Qualitative Data, Routledge, London, 173-194

Impact of Ebola on our work in Sierra Leone

Last week the World Health Organization (WHO) issued an international health emergency as the Ebola outbreak in West Africa has claimed nearly 1,000 lives since it was first detected in Guinea in February 2014. Ebola is a severe viral illness, transmitted by bodily fluids, with mortality rates of between 60 and 90 percent. The WHO said the outbreak is an “extraordinary event”.

Discussing how the outbreak has affected our research in Sierra Leone, ICMHSR researcher Meredith Newlin was interviewed by BBC York reporter Elly Fiorentini on Friday (listen here - start at 1.04.30). During the interview, Meredith explained how our research plans have changed in recent weeks as the country responds to the outbreak.  We had planned to visit Sierra Leone in September to deliver the co-produced training we developed with stakeholders during our last visit. However, when the Ministry of Health and Sanitation issued a state of emergency and began restricting travel, it became clear that it would not be possible to bring the nurses together from their posts in district hospitals across the country and we decided to postpone the training.

During the interview, Meredith discussed the importance of addressing psychosocial issues around the outbreak. As we saw during our visit in May, Sierra Leone’s health facilities have a shortage of doctors, nurses and infrastructure, and were struggling to cope even before this outbreak. Whilst public health information has been consistent, an “epidemic of fear” in Sierra Leone has led to suspicion and fear surrounding the disease and contributed to its spread.

Our partners in Sierra Leone, Enabling Access to Mental Health Sierra Leone (EAMH) and King’s Sierra Leone Partnership (KSLP) have held emergency response training for the 21 psychiatric nurses. The nurses are now focussed on providing mental health support to families and communities in some of the worst affected areas, an essential component of the country’s response to the outbreak.

Keeping in mind the safety of our research team and the nurses we will resume plans to deliver the training at a later date and in the meantime look for ways that we can support the mental health response.

Sharing lived experience: how personal is ‘personal’?

Practitioners sometimes share things about themselves with the people they work with; sometimes personal things, sometimes non-personal, everyday things. But which ones are which? How personal is ‘personal’?

The International Centre for Mental Health Social Research and Leeds and York Partnership NHS Foundation Trust are undertaking research on sharing lived experience by mental health practitioners with service users. As part of that, we’d like to know how ‘personal’ different types of information are considered to be. So we are asking volunteers to complete a short questionnaire.

Several other studies have graded disclosures according to how personal the information being shared is. However, some research suggests views change over time, so it may be the case that people nowadays are more open about themselves, and see information about themselves as less personal than they would have done in the past. Since there are no studies that have rated disclosures according to how personal they are in the UK, in recent years, with the professionals that the current study is engaging with, it is necessary to construct a new scale.

If you want to take part, you’ll be asked to rate different things that a practitioner might share with a service user, according to how personal you think they are. If you are involved in social work or social care, whether in mental health services or otherwise, please consider taking part in this survey.

The survey takes approximately five minutes to complete and you could win a £20 Amazon gift voucher.

You can take part on-line by clicking here.

Further information about the study is available from the Chief Investigator, Jonny Lovell, by email: Also, you can keep up to date with the study by visting Jonny’s blog.

Thank you!

Public lecture and launch on 24th June

We are approaching the end of our first year in the International Centre for Mental Health Social Research (ICMHSR) at the University of York and we would like to share a few aspects of our work and invite you to join us on Tuesday 24th June for our public launch.

ICMHSR was provided with start-up funding by the University of York a year ago to bring together collaborators from Australia, India, Europe and the US. The collaboration explores the role of social problems in the cause and course of mental health problems and aims to develop and evaluate innovative ways of tackling them. This includes validating research tools for use in different cultures, supporting local practice-based research, and evaluating approaches such as working with social networks and communities. ICMHSR researchers aim to share knowledge across boundaries with the potential for global impact.

Over the last year, we have:

  • brought together 34 researchers and 9 PhD students from several departments at the University of York who have research interests in this field. More can be found about our internal collaborators here.
  • brought together international collaborators to create the International Inclusion and Connected Communities Collaborative (I2C3). Our activities have included joint conference presentations, drafting of a position paper and grant applications. More about ICMHSR’s international collaborators can be found here.
  • funded a PhD studentship on practitioner disclosure of mental health problems from which we are developing a parallel study in Australia to facilitate international comparison. More information about this study can be found here, including an opportunity to take part in the study.
  • obtained funding from C2D2 and the Maudsley Charity to undertake feasibility and scoping work in Sierra Leone for social intervention training in the country’s nascent mental health services. A recent update on this study can be found here.
  • collaborated with Mindapples and other partners to obtain funding from Guys and St Thomas’ Charity and Comic Relief to evaluate pilots of the Mindapples mental effectiveness training. Our Mindapples tree is still up in the reception of the Department of Social Policy and Social Work if you are in York and would like to share your Mindapples.
  • collaborated with colleagues in the Department of Health Sciences on a C2D2-funded project to develop a measure of psychosocial health for people displaced by humanitarian crisis.
  • obtained additional funding from the NIHR School for Social Care Research to produce training materials for the Connecting People Intervention, which have been viewed and used in many countries. These can be found here.
  • hosted regular seminars and events at the University of York and in collaboration with Making Research Count. Information about our news and events can be found here.

Our priority over the next few years is to continue to submit funding applications for multi- and cross-national research which contributes to the evidence base for practice in the UK and across the world. Updates about our work can be found on this blog, which you can subscribe to if you are interested in finding out more.

Public launch

Lynette Joubert

On Tuesday 24th June at 6.15pm we are holding our first public lecture which will be given by one of our international collaborators, Associate Professor Lynette Joubert from the University of Melbourne, Australia – ‘Improving mental health through understanding our social context’. Dr Joubert will discuss recent research that defines and analyses the importance of managing both risk and opportunity in social networks to promote emotional well-being. She will report on a social network intervention (CHIERS) which reduced representations for deliberate self harm at emergency by 58%, suicide ideation by 37% and depression by 25%. This public lecture is free, though you will need to obtain a free ticket online to reserve your place. Please click here for additional information and to book your place.

We will be holding an informal wine reception after the lecture to mark the public launch of ICMHSR. If you are interested in our work and able to come along, it will be great to see you there!

Mental health social interventions in Sierra Leone

post by Meredith Newlin
Martin Webber and I have been in Sierra Leone to follow-up from my last visit in July 2013 when I conducted a feasibility study to explore the potential for developing social interventions with mental health workers. The initial visit, funded by the Centre for Chronic Diseases and Disorders (C2D2), was an opportunity to meet with a variety of stakeholders to better understand current practice and explore the extent to which principles social capital are relevant to the communities in Sierra Leone. The second visit, funded by Maudsley Charity, was focussed on co-producing a culturally appropriate social model and training programme for the nurses with local partners, as well as exploring the acceptability of this model of practice.

Findings from the feasibility study indicate enthusiasm for the potential of social interventions to promote meaningful involvement for adults with mental health problems, aiding in their recovery and enhancing social inclusion. Mental health services on the whole are extremely under-resourced and there is significant need for training in low-cost psychosocial approaches to mental health care at both the district and community levels. Findings from the feasibility study were developed into a short film, which can be viewed here.

Based on reflections from the feasibility study, we identified 21 trained psychiatric nurses as the most appropriate group to work with in future training, as they have strong mental health experience but are still limited in how they might be able to apply the biomedical model in which they were largely trained. Through conversations with our partners, King’s Sierra Leone Partnership (KSLP), EU-funded Enabling Access to Mental Health (EAMH), and the Sierra Leone Mental Health Coalition (MHC), we recognise gaps in their current practice around the social aspects of mental health, particularly the capacity for nurses to engage with service users social support networks such as family members and the wider community.

The 21 nurses received extensive training from the College of Medicine and Allied Health Sciences (COMAHS) and EAMH over the past two years. We acknowledge that new skills must fit into the training they have received, and this not meant to be replacement training but rather supplemental. It’s important that training modules and activities for interactive learning also serve as refresher to what they have already learnt. For example, nurses were trained in the MHGap Intervention Guide, the World Health Organization’s (WHO) flagship programme on mental health for scaling-up interventions by general health practitioners in low- and middle-income countries. The nurses have a strong foundation in diagnosing mental illness but what we suggest is an extension of their initial training in which we integrate practical application of social methods, enabling nurses to work in the most under resourced settings.

We heard from stakeholders the importance of teaching nurses about other community-based models of mental health services in African contexts. We will use the limited evidence available to ensure the training programme is in-line with strategies found to be effective in other West African countries. Also in regards to sharing good practice, we recognise the challenges faced by the nurses as they have been posted across the country in all 14 districts, thus peer support approaches are important to ensure the nurses learn from one another.

It is our hope that is in the future the model and training programme could be a useful tool and product for cross-disciplinary training. From the conversations we’ve had, the capacity for its use in other health sectors has been made clear; it might be useful in future training of social workers, PHU staff, CHO’s or primary care doctors. We plan to make the training bespoke for the variety of contexts the nurses are working in. For example, the nurses from the Sierra Leone Psychiatric Hospital in Freetown have different challenges and capacities to an outpatient hospital in Bo, and a community-based clinic in Kono District, but there are ways to take this approach to all these contexts.

Read Martin’s first impressions on mental health services in Sierra Leone here.

Visit of Chief Social Workers to York: 9th May

On Friday 9th May the Chief Social Workers will be visiting York. Isabelle Trowler and Lyn Romeo provide leadership for the profession to drive forward the improvement and reform programme for social work and it will be a pleasure to welcome them to York.

They will be meeting with social work staff, students and practice educators at the University of York in the morning. In the afternoon they will be attending an open seminar jointly organised by the International Centre for Mental Health Social Research and Making Research Count. This seminar has an open invitation to practitioners in the region (and beyond) to come and meet the Chief Social Workers.

The afternoon seminar begins with presentations from two social work PhD students from ICMHSR. Tracee Green will talk about her research on parenting assessments and Jonny Lovell will talk about his study on self-disclosure by practitioners in mental health services. Both are experienced practitioners whose studies have arisen from practice-based questions, highlighting the contribution to social work research which practitioners can make.

The second part of the session will be an interactive dialogue with the Chief Social Workers about their role. This will feature a panel discussion with Social Work  Directors from across the region.

There are still places available at this seminar. Please click here to find out how you can book your place.

Social work and recovery

Social workers support the recovery of people with mental health problems. Recovery is a process whereby individuals or families restore rights, roles, and responsibilities lost through illness, disability, or other social problems. It requires hope and empowerment, supported by a vision for a different way of being.

Recovery is a concept at the heart of social work practice, though the profession is frequently following others in articulating and evidencing good practice. Yet despite the theoretical basis of recovery finding synergy with social work, there is limited research informing social workers on how best to intervene effectively and to influence the social factors enabling or impeding recovery.

The term ‘recovery’ has now become part of routine mental health service delivery and policy frequently without acknowledging its social origins. Internationally, recovery is being framed as core to community mental health service delivery, but all too frequently with reference to symptom reduction and service rationing rather than regaining control over one’s life.

Social work theory and practice largely adopts a holistic, bio-psycho-social systems approach, which is central to models of social recovery. Practitioners are working daily to support the recovery of the individuals and families they are working with, frequently using highly effective approaches such as strengths or asset-based assessments, self-directed support or enhancing social inclusion. However, ‘recovery’ is rarely taught as a social theory informing social work practice on qualifying programmes, possibly because it is under-theorised and lacking a well-developed evidence base.

Special Issue of the British Journal of Social Work, 2015

ICMHSR Director Dr Martin Webber and ICMHSR international collaborator Associate Professor Lynette Joubert of the University of Melbourne, Australia, are editing a special issue of the British Journal of Social Work on the theme of ‘Social Work and Recovery’.

This special issue will publish internationally relevant contributions to social work research and thinking about recovery across multiple social work fields. Social work researchers and practitioners who are researching and working in the field of recovery are invited to contribute their work to make a distinct social work contribution to the growing evidence base about recovery.

They are seeking abstracts of up to 800 words by 9th May 2014 and full papers will be required by 5th September 2014.

For full details of the aims and key themes of the special issue can be found on the British Journal of Social Work website.


University Mental Health and Wellbeing Day: 19th February 2014

University Mental Health and Wellbeing Day is an annual event to promote the mental health of those who live and work in higher education settings. This year it will be held on Wednesday 19th February.


The International Centre for Mental Health Social Research (ICMHSR) and the Department of Social Policy and Social Work are marking the event by sharing ideas about what we do to look after our minds.

ICMHSR have put up a Mindapples tree in the reception of the Department of Social Policy and Social Work in Alcuin College C block. Hanging on the tree are Mindapples: notes about simple day-to-day activities that we do which are good for our minds.


“We invite all staff, students and visitors of the University to contribute to the Mindapples tree,” says Dr Martin Webber, Reader in Social Work and ICMHSR Director. “Pens and Mindapple cards are available in the reception area. Please take a few minutes of your time to fill out your Mindapples and hang them on the tree.”

The tree will be on display in Alcuin College C block for several weeks. Everyone is welcome to come along and see what others do to look after their minds.


Sharing lived experience in mental health services

Self-disclosure refers to sharing information about ourselves with other people. Most people share things all the time without thinking much about it, including what they had for tea last night, what they think about social issues, and more personal things, like their past experiences and their personal identities.

It is these last two types of disclosure – experiences and identity – that tend to cause most controversy, especially in professional settings. How much should a therapist share about themselves with a service user? What about doctors, nurses, and social workers? What should they share, or what is acceptable for them to share?

Opinion is divided between those who think professionals should be a neutral, blank canvas, and those who think judicious disclosure can be beneficial to the therapeutic relationship. The divide isn’t always that neat, of course. Practitioners might decide to disclose some things, in some settings or roles, but not in others. The decision on whether to share information might also be affected by how personal it is. For some professionals, though, disclosure about the self is an integral and necessary part of their job.

Peer Mentors share (or disclose) information about their “lived experience” automatically because of the job they do. This can help to build relationships with service users in ways that they might find helpful, beneficial, and an aid to recovery. If service users benefit from Peer Mentors sharing information about themselves, then sharing lived experience by other professionals might also be beneficial and welcomed by service users. On the other hand, disclosures made by doctors and nurses, for example, might be seen as unprofessional, or unwelcome. 

There is little training, guidance or research available on the subject of self-disclosure and sharing lived experience in mental health interventions to help people make decisions about what to share and when. To address this issue, the International Centre for Mental Health Social Research at the University of York, and Leeds and York Partnership NHS Foundation Trust, are working together to find out what service users and staff think about self-disclosure (or sharing lived experience) so we can produce guidance and training that will be delivered and evaluated.

The research will involve recruiting service user researchers to collaborate in all aspects of the research. Views will be sought about self-disclosure and sharing lived experience from both practitioners and service users through a survey, and focus groups will examine emerging themes. From there, a collaboration between practitioners, service users, and researchers will develop training and guidance that will be delivered and evaluated. Discussions are also taking place with a mental health service in Australia, with a view to undertaking the research out there too, to get wider perspectives and provide a comparison to the UK investigation.

The methods and tools for undertaking the research are in the process of development and, after ethical approval is gained, it is anticipated that the field work will begin in the summer of 2014. One service user has come forward with an interest in being involved as a researcher, and one mental health practitioner has offered their services too, which is great news (thank you for getting involved!).

Consultation about the research took place at the Lived Experience in the Workforce conference in Leeds in December 2013, and with Leeds Researchers (the Leeds and York Partnership NHS Foundation Trust service user research group) in January 2014. The comments and suggestions received have been integrated into the research design.

Questions, comments, and suggestions are welcome at any stage, so if there is something that you’d like to say, please get in touch with the Lead Researcher, Jonny Lovell, PhD Student in the International Centre for Mental Health Social Research, in the Department of Social Policy and Social Work at the University of York, by email:

Find regular updates about the study, please follow Jonny’s blog.

Community Treatment Orders: Effectiveness, Understanding and Impact

Community Treatment Orders (CTOs) were one of the most controversial amendments made to the Mental Health Act 1983. In 2008 England and Wales joined Scotland and around 70 different jurisdictions around the world in obliging people to adhere to treatment in the community. The rationale is usually to prevent relapse or provide a less restrictive alternative to hospital for ‘revolving-door patients’ with severe and enduring mental illness. However, despite their widespread use, the evidence for their effectiveness is limited.

Last year the Oxford Community Treatment Order Evaluation Trial (OCTET), the first major evaluation of CTOs in England and Wales, reported its findings. This randomised controlled trial found that the same number of people on CTOs were readmitted to hospital as those on section 17 leave of absence. The extra restrictions placed on people on a CTO did not appear to reduce their readmission rate, as was originally envisaged when the orders were first introduced.

Running alongside the randomised controlled trial was an extensive qualitative study which explored patient, consultant and family carer experiences. Findings from this study may help to explain some of the results of the trial. We are pleased to welcome OCTET researchers at our next International Centre for Mental Health Social Research seminar on 12th February to discuss these emergent findings.

In three interlinked presentations, OCTET researchers will present findings and research in progress from the OCTET programme of work:

  • Jorun Rugkåsa will present an up-to-date review of the evidence for the effectiveness of CTOs (including OCTET) and OCTET’s main findings, and discuss the implications of these and the wider current evidence base for the future of CTOs.
  • Krysia Canvin will present findings from the qualitative arm. She will juxtapose consultants’ and patients’ interpretations of the CTO’s powers to consider the implications for patients’ experiences and the predictability of CTOs.
  • Francis Vergunst will present his ongoing DPhil research in which he is exploring the effect of CTOs on patients’ longer-term social outcomes by assessing patients’ social inclusion, social networks, and capabilities/quality of life.

The seminar will be held from 12 noon to 1.00pm at the University of York and is free and open to all. Further information can be found on our events page.