Improving shared decision-making in mental health

My latest blog on Social Care Elf is published today. It critiques a paper from the US on shared decision-making in mental health. To be honest, I was rather under-whelmed by its findings. You can either read my thoughts in full here or over at the Social Care Elf website. If you do visit the Social Care Elf, then also check out Tuesday’s blog written by Ian Cummings on our paper reporting the findings of our qualitative study which led to the development of the Connecting People Intervention.

Introduction

It is widely accepted that it is important to involve people who receive mental health care in decisions which affect them. Shared decision-making occurs when both the provider and service user are considered as experts and are both able to participate in discussions about treatment decisions.

Research studies have found that many people play a passive role in decision-making in mental health care. This is partly because the provider is reluctant to permit this and partly because of individual characteristics such as the severity of mental health problem or an individual’s age or gender, for example. However, little is known about service users’ perspectives on what helps or hinders shared decision-making.

A study conducted in a US Veterans Affairs Medical Centre by Eliacin et al (2014) aimed to investigate this to help improve shared decision-making in mental health care.

Methods

The researchers interviewed 54 people after their appointment at a Medical Centre using a semi-structured interview for about one hour. Most participants were white, male and aged under 40 years old. Their diagnoses included post-traumatic stress disorder, depression, anxiety and schizophrenia. The interviews were audio-recorded, transcribed and analysed using thematic analysis.

Results

Interviewees expressed a wide variety of preferences for participation in shared decision-making. Some preferred full involvement and active participation in their treatment, often involving partners, friends and family members in decision-making. Others, though, preferred to keep it private.

Many interviewees chose to leave decisions to ‘the professionals’ who ‘know best’ what to do or could be trusted to make the right decisions about their care. Some were passive as they feared a poor decision could impact negatively on their mental health. Others feared being judged, going against established ‘patient-physician’ roles or possible repercussions from providers.

Interviewees highlighted that shared decision-making can cause disagreements which impacts negatively on relationships with providers. Poor communication often appeared to be a problem. However, when concerns were discussed with providers, they were frequently resolved.

Finally, substance use arose as a significant tension in relationships with providers and in the shared decision-making process. Some interviewees stated that their history of substance use caused concerns for providers which made it more difficult to build trusting relationships which are crucial for shared decision-making.

Conclusions

This study found that even when people believe that shared decision-making is a good idea, it may not always be feasible or desirable in practice. Educating people about shared decision-making is not sufficient to make it happen in reality. Instead, a strong relationship between the service provider and service user, and effective communication, is essential to facilitate shared decision-making. People need to be empowered to be involved in making decisions about their care and it is the responsibility of providers to consider how this can be achieved.

Strengths and limitations

This study appeared to be well-conducted and the data was appropriately analysed. Whilst modest, a sample of 54 is usually sufficient to answer research questions in qualitative studies. However, the sample of predominantly young, white, male, service veterans in the US limits our ability to apply the findings to mental health service users in the UK.

Interviewees for the study were attending appointments at a Health Centre. It is not stated who their appointments were with, but they appeared mainly to be with doctors as decisions about medication were frequently mentioned. As service users may relate differently to doctors than social care workers, it may not be possible to generalise these findings to a social care setting. However, the nature and strength of the relationship between service user and worker is important irrespective of the professional background of the worker. Getting this right can facilitate shared decision-making.

The researchers presented a useful overview of their findings, but the paper is very brief and does not elaborate on the results in any depth. One would expect more detail to emerge from 54 interviews than was presented in this five-page paper. It is possible that other publications are planned. However, it could be improved by suggesting what proportion of interviewees held the opinions reported in the paper. Descriptive words such as ‘some’, ‘several’, ‘others’ and ‘a number of participants’ could be replaced with more precise descriptions indicating the weight of opinion about the core themes found in the study.

Summing up

I felt underwhelmed by this study because it does not add substantially to our knowledge of co-production and shared decision-making in social care. We already know that relationships are key to involving people more in their own care and support, and good social care and social work practice focuses on building strong relationships with people. Arguably, we have a stronger tradition of doing this in social care than in medicine. Of course, this is not to say that we cannot improve how we make decisions collaboratively (many people would argue that the Care Programme Approach leaves a lot to be desired in this regard (e.g. Lawson et al 1999)). However, this study reminds us that shared decision-making is context-dependent and we should always seek to empower people to be fully involved in making decisions about their own care and support.

References

Eliacin, J., Salyers, M. P., Kukla, M. & Matthias, M. S. (2015) Factors influencing patients’ preferences and perceived involvement in shared decision-making in mental health care. Journal of Mental Health, 24, 24-8.
Lawson, M., Wolfson, P. & Strickland, C. (1999) User involvement in care planning. The Care Programme Approach (CPA) from the users’ perspective. Psychiatric Bulletin, 23, 539-541.

Make Employer Standards mandatory

Community Care have re-launched its campaign to Stand up for Social Work to raise the profile of social work in the run-up to the general election. There are many ways to get involved. If everyone did something – however small – it will make a difference. Take a look at their website for some ideas.

To help the campaign, I wrote a piece about why enforcing the Standards for Employers of Social Workers in England may help to reduce stress and burnout in the profession. It can be viewed here, but below is an earlier version of the article.

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Employer standards

Social workers experience high levels of stress and burnout. 80% of over 2,000 social workers polled by Community Care in 2014 believed that stress was affecting their ability to do their job. This has been found in repeated surveys over the last 20 years, but the problem seems to be getting worse.

The Standards for Employers of Social Workers in England are currently voluntary. Published by the Local Government Association on behalf of the Social Work reform partners, these Standards are indicative of good practice in the employment of social workers. Making them mandatory may help to reduce stress and burnout in the profession.

In summary, there are eight Standards:

  1. Clear social work accountability framework
  2. Effective workforce planning
  3. Safe workloads and case allocation
  4. Managing risks and resources
  5. Effective and appropriate supervision
  6. Continuing professional development
  7. Professional registration
  8. Effective partnerships

The substantial evidence base about the causes and correlates of stress among social workers provide some clues about how stress and burnout can be reduced.

Caseloads

Research tells us that caseload size and the complexity of work undertaken is associated with higher levels of stress in social work. Statutory work, such as in mental health or children and families social work, is a particular source of stress. This leads to a high turnover of practitioners – particularly in children and families teams – but also the development of resiliency in experienced practitioners.

Social worker stress can be reduced if caseload sizes are appropriate for the experience of the worker and the complexity of roles they are expected to undertake. The enforcement of Standard 3 would mean that both practitioners and service users could be protected from harm caused by excessive workloads.

Working environments

Working environments which promote peer support, value the contributions of social workers and encourage practitioners to voice their concerns can help to alleviate social work stress. However, the culture of fear which is pervasive in social work offices does not promote conducive working environments.  Standard 4 requires employers to foster a culture of openness to empower social workers to make appropriate professional judgements and to raise concerns without fear of recrimination. If this were made mandatory it would make a significant contribution to alleviating social worker stress.

Resources

Research findings indicate that social work stress is caused by having insufficient resources to do the job. This is becoming an increasing problem in the Age of Austerity where it is commonplace to be working with minimal local authority resources and restricted voluntary sector capacity. At the most basic level, social workers need to have the practical tools to do their jobs. Enforcing Standard 4 will go some way to ensure this.

Supervision

Practitioners not receiving reflective supervision are at higher risk of stress and burnout. Standard 5 requires employers to provide professional supervision by a registered social worker which meets their learning and development needs. This is not occurring in many teams, placing practitioners at a higher risk of burnout from stress.

Conclusion

Reductions in public expenditure have caused increasing social work caseloads and reductions in the number of practitioners. Enforcing the Standards for Employers of Social Workers in England will not solve this problem, but it will certainly go some way towards mitigating many of the causes of stress among social workers.

Community health networks of people with mental health problems

The findings of the Community Health Network study were published this week by Health Services and Delivery Research. Led by Vanessa Pinfold of the McPin Foundation, this study investigated how social contacts, meaningful activities and places that people with mental health problems had connections with were utilised to benefit health and well-being. We examined what happened in people’s lives using a network-mapping technique; how community assets were used to support recovery; and the influence of primary care and secondary mental health practitioners in personal networks.

Aims

The study aimed to understand the personal networks of people living with a mental health problem from their own perspective. We were also interested in how personal well-being was supported by the exchange of resources so that we could better understand how individuals’ networks could be supported by practitioners and mental health providers.

Methods

The study had five components:

  1. 30 in-depth interviews with organisation leads to understand the local service and policy context for supporting people with mental health problems in the two study sites
  2. Network mapping of 150 people with mental health problems to collect personal network data on people, places and activities as well as measures of social capital, well-being and health functioning
  3. 41 in-depth follow-up interviews to explore how people with mental health problems managed and developed their connections over time
  4. 44 telephone interviews with GPs, psychiatrists, care co-ordinators and third-sector staff to understand their role in facilitating growth of social, activity and place connections
  5. 12 in-depth interviews with stakeholder leaders in primary care, commissioning and mental health service delivery organisations to share study findings and gain policy updates.

The study was conducted in a London borough and a county in south-west England.

Main findings

Three types of personal networks were found:

  • Diverse and active networks had higher numbers of people, place and activity connections. Those with these networks had the highest proportions of new connections and highest network satisfaction. Qualitative analysis found active management of connections, resources and network opportunities, but that big was not always better. Diversity and variety could be associated with enhanced personal well-being and more durable networks, but for some people connectedness caused stress and distress. Manageable routines were important and stigma featured prominently; as networks diversified, the potential for mental health discrimination increased.
  • Family and stable networks had the highest access to social capital and health resources, but lower levels of activity and place connection than diverse and active networks. Participants with these networks spent most of their time at home but tended to live with others. Qualitative analysis found high levels of social support and building blocks for wellness and recovery through family connections; however, such support could also restrict access to wider social capital and well-being resources. Reciprocal relationships were highly valued.
  • Formal and sparse networks were significantly smaller with lower access to social capital and health resources, poorer functioning and well-being. They were the least active, having fewer friends, family and wider contacts, and practitioner contacts were more dominant. Qualitative analysis found mental health problems featured most strongly in these networks framing decisions and experiences. We found agency in some of these networks, despite limited resources, and potential building blocks for recovery; others needed help identifying potential opportunities. Formal and sparse networks were sometimes considered beneficial for supporting individual well-being. These networks also revealed the resentment that some people feel when relying on practitioners to support mental health and well-being.

Social capital was mostly accessed through family and friends, with practitioners generally having a more limited role, although practitioners were more prominent in networks lacking informal social support. Connections to activities, including employment, and places were important, as they were gateways to social ties. Our study participants had access to lower social capital than the general population.

We found individual agency across all network types and surfaced tensions, including relationships with practitioners or families; dealing with the impact of stigma; employment and financial frustrations. The value of connectedness in countering the risk of isolation and loneliness within personal networks and supporting recovery was evident. Connectedness shapes identity, providing meaning to life and sense of belonging, gaining access to new resources, structuring routines, helping individuals ‘move on’ in their recovery journey.

Mental health and primary care services appeared to thwart the agency of practitioners, creating obstacles to person-centred outcome-focused care, even within the third sector, where people wanted to work in this way but were restricted by commissioning arrangements. Developing the personal networks of individuals with SMI was not an organisational priority in the way that management of symptoms, medication and risk was. As long as this remains the case, it seems unlikely that these people will be able to build personal networks that make use of the full potential of their inner and external resources.

Implications for practice

There is a need for improved organisational collaboration. Several service ‘silos’ were in operation and we found there was a significant community resource knowledge gap; many practitioners rely on their own interests and professional networks to learn about community opportunities to support clients. A system that could encourage interorganisational community information sharing, and ideally practitioner and service use feedback on the value of local resources, is recommended.

Meaning and direction must come from people with mental health problems themselves, but practitioners have a vital connection-building role, in part by showing that networks and the resources within them matter to recovery, alongside medication and psychological therapies. Organisations also have a key role to play and, in times of change or restructuring, this includes planning how changes in community resource levels might impact on people with mental health problems.

Skilled care co-ordinators acknowledge the importance of network development, but need support to make it a larger part of their role. Creating shared care processes with primary care and the third sector will become fundamental in the management of severe mental health problems; being alert to the importance of connectedness through people, places and activities should feature in care planning.

A crucial gap in practice was the lack of any overarching framework for the provision of services to people with mental health problems following a recovery approach. Social outcomes of care are largely absent in the current NHS outcomes framework which applies only to secondary care. Building a set of social outcome indicators for mental health problems and including network indicators that operate across service silos would incentivise joint working and promote social inclusion.

Final report

The final report is available open-access in the Health Services and Delivery Research Journal. The full-text PDF can be downloaded here free of charge.

Pinfold, V., Sweet, D., Porter, I., Quinn, C., Byng, R., Griffiths, C., Billsborough, J., Enki, D.G., Chandler, R., Webber, M., Larsen, J., Carpenter, J. & Huxley, P. (2015) Improving community health networks for people with severe mental illness: a case study investigation, Health Services and Delivery Research, 3 (5)

QVC or CQC? Making choices about care and support

In my latest Social Care Elf blog I review a systematic review exploring how people with long-term conditions or disabilities use information about the quality of services to inform their decisions about care and support. It concluded that they are more likely to make their choices using their own definition of quality rather than one provided by a body such as the Care Quality Commission.

Background

Choice is a central principle in the personalisation of adult social care. Social care policy in the UK, and in many other countries, emphasises that people with care needs should be provided with choice about who provides their care, and where and how it should be provided.

There are many benefits to providing choice including improving the quality and effectiveness of services, and improving individual outcomes (Dowding & John, 2009). However, the risks of making the wrong choice can be high. If people with long-term care needs have to move to a new nursing home, for example, this could be very harmful for their health (Holder & Jolley, 2012).

High quality information is required to help individuals, and the people who support them, to make the right choices about care. This is particularly important for people with long-term conditions or disabilities. Therefore, Turnpenny & Beadle-Brown (2014) set out to summarise what is known about:

  • how people with long-term conditions or disabilities and their family carers find information about the quality of services
  • how information about the quality of services informs decision-making about care
  • what type of information about the quality of services is most useful in choosing care services

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Methods

The researchers used a systematic review to synthesise research findings. They included peer-reviewed research papers published between 2001 and 2012 in their review which focused on adults with a long-term condition or disability making a choice of a social care or healthcare provider. They defined choice as the assessment of different options and a decision to select one of them. Papers focusing on decisions about whether or not to use a service, or about the type of service to use, were excluded.

The quality of each paper was assessed using a quality appraisal checklist, though none of the papers were excluded because they were of low quality.

Results

The researchers found 13 papers from the UK, USA and the Netherlands which met their inclusion criteria. About half focused on decision-making in healthcare, the other half on social care, and one considered both. Nine of the 13 studies explored the experiences of decision-making using semi-structured interviews or focus groups. The other four used experimental or other quantitative methods.

Bringing together the findings of these studies, they found that people with long-term conditions or disabilities had limited awareness of inspection reports or other information about the quality of services. Many described the process of finding a suitable service as ‘working in the dark’. Those who used information to inform their decision-making described using a wide variety of sources such as advertisements, media, professional advice or brochures. Information and recommendations from informal networks were particularly important for older people, though many also used online information to help them make choices about their care and support.

The studies in the review found that most choices were based on general information such as the location of the service or the perceived reputation of a provider. People tended to define quality for themselves using indicators such as cleanliness, friendliness of staff or the general ‘feel’ of the home. When a decision had to be made quickly, because of urgent need for care, the use of quality information decreased. However, when people used quality information to inform their decision-making they felt more satisfied, empowered and had a greater awareness of personal needs.

The way in which information was presented was important to people with long-term conditions or disabilities and their family members. Verbal and written information which was clear and easy to use was preferred, whereas star ratings and aggregate quality measures were difficult to interpret. Vague indicators and general results about the quality of providers were seen as unhelpful. However, the most important information about the quality of care was considered to be consumer satisfaction. Information about subjective experiences of care was regarded as more trustworthy than information provided by service providers or publicly available information on the quality of care.

Conclusions

The researchers concluded that the publication of quality information about social care and healthcare services has had limited impact on the decision-making processes of people with long-term conditions or disabilities, who tend to rely on other sources and types of information when making decisions about care and support.

Help and support signpost

Strengths and limitations

This review summarised the findings of high quality research on how people with long-term conditions or disabilities use information to make decisions about their care and support. By using specific inclusion criteria, and only including robust peer-reviewed research, the review’s findings are more valid and reliable.

The researchers focused on a specific set of questions which permitted an in-depth focus on the use of information by one group of people with care needs. However, the findings cannot be generalised beyond people with long-term conditions or disabilities. Also, as the 13 papers included decision-making in both health and social care – which included choices about services or treatments as diverse as elective surgery, healthcare plans or care homes – some of the findings may not be applicable to social care in the UK.

The review was generally well-conducted though some of the procedures, such as quality appraisal, data extraction and thematic coding, could have been conducted by both the researchers working independently. While the second author often checked the work of the first author, it would have been more rigorous if both had worked independently and then compared their findings to minimise the potential for researcher bias.

Summary

People with long-term conditions or disabilities frequently trust information provided to them by friends or family rather than professional sources of information about the quality of care and support services. They are more likely to make their choices using their own definition of quality rather than one provided by a body such as the Care Quality Commission. If inspection reports and other quality indicators are to play a meaningful role in informing choices about care and support, their messages need to be communicated clearly and concisely.

References

Dowding K. & John P. (2009) The value of choice in public policy. Public Administration, 87 (2), 219–233.

Holder J.M. & Jolley D. (2012) Forced relocation between nursing homes: residents’ health outcomes and potential moderators. Reviews in Clinical Gerontology, 22 (4), 301–319.

Turnpenny & Beadle-Brown (2014) Use of quality information in decision-making about health and social care services: a systematic review. Health and Social Care in the Community,  doi: 10.1111/hsc.12133.

Migrant mental health

This week I’m really pleased to welcome David Ansari to the University of York. David is a collaborator of the International Centre for Mental Health Social Research (ICMHSR) from the University of Chicago and he’s coming to discuss some research plans with me.

I worked with David on the development of the Connecting People Intervention when he undertook ethnographic fieldwork with me in the UK. A skilled ethnographer, David helped us to explore good practice in supporting people with their relationships with others.

International Centre for Mental Health Social Research lunchtime seminar

On Thursday 5th March there is an opportunity to meet David when he talks about his own work on migrant mental health. He will be presenting at the ICMHSR lunchtime seminar at 12pm in A/C/209 at the University of York. Further information can be found on the ICMHSR events page, but here are more details about his project:

Diagnosing disorder and recognising difference: Training in immigrant mental health and social services in Paris

In France, the Republican ideal of equality has led to the lack of official acknowledgement of cultural difference within the country’s multicultural population. In the context of mental health services, France’s policies of inclusion have precluded the establishment of specific state-sponsored services for migrant and minority groups. However, previous research describes how clinicians have developed approaches to address the mental health needs of France’s migrant groups with varying degrees of state recognition and acceptance by other clinicians.

My dissertation project explores how clinicians and front-line workers, such as psychiatrists, psychologists, social workers, interpreters, and medical secretaries, manage tensions between state discourses of providing universal care for all citizens, expertise regarding the cultural and structural factors impacting mental illness, and popular sentiments about immigration in France. I examine how knowledge of immigrants’ experiences of mental illness is taught, contested, and applied in mental health and social care settings. I focus on the ways in which actors in these service settings disentangle knowledge about structural barriers to mental health from perceptions regarding cultural factors that impact care.

My thesis involves an ethnographic project at a multilingual mental health centre in Paris. I will build on previous research by examining how clinicians are trained to recognize culturally complex cases of mental illness and how protocols are developed to address the mental health needs of migrants.

All are welcome!