Examining User Involvement In Mental Health Care
There is increasing emphasis on the need for the NHS to withdraw from a paternalistic approach to healthcare and adopt a patient centred approach. Like any service, it is vital that one is assured of the excellence of the facility before committing to utilising it. Obtaining viewpoints from different users, based on different experiences, can help to improve mental health care and aid expansion of the limited understanding of certain psychological conditions. It is therefore necessary to review the literature surrounding this area and ascertain the value of user involvement in mental health care.
Although a service ‘user’ is most commonly seen as a patient requiring treatment, that patient is also somebody who has endured the rigorous procedure of mental health treatment, and is equipped with knowledge necessary to aid improvement of the system for further practice. For the purposes of this review, ‘user’ will refer to any mental health patient who utilises mental health services for treatment purposes. It is important to define what the term ‘involvement’ refers to. Throughout this paper, ‘involvement’ will refer to the participation of any named user in the process of service improvement, namely for mental health care. This review endeavours to highlight benefits of user involvement in mental health care and identify some methods of and barriers to involvement, as well as suggest methods to overcome these.
Two main databases – Medline and PsycInfo - were searched to find the articles discussed in this review. An initial search returned considerably large numbers of articles; results were then refined to obtain those most relevant to the review title. Studies published previous to the year 2001 were excluded from search results in line with the introduction of the ‘Health and Social Care Act 2001’, and a limit for ‘English language only’ was placed. Additional papers were located through citation tracking.
The need for user involvement in mental health
The government has placed a large emphasis on the importance of user involvement, and the introduction of the ‘Health and Social Care Act 2001’ has reinforced the duty of health care professionals to consider views of service users when developing new treatments (Great Britain. Health and Social Care Act 2001). It is unfortunate that in today’s society many assume that mental health patients cannot play as active a role in improving healthcare as patients suffering from other physical illnesses. The stigma associated with this area can result in a patient’s opinion being waived, with the often incorrect reasoning that they lack capacity to form a valid opinion. Mental health is a sensitive branch of medicine, and patients undergoing psychiatric treatment spend more time in hospitals and are far more dependent than other patients. It is therefore vital that their needs are ascertained and addressed in order to maximise comfort.
‘Tait and Lester’ (2005) identified in their literature review that consumers are becoming increasingly aware of the opportunities available to them, and can easily access information via the internet. Legislation states that users must play a significant role in healthcare decision making, but it stands unclear to what extent this is implemented in the field of mental health.
Hansen et al (2004) investigated the agreement of opinions of patients and health care workers with regards to decision making and treatment. They found that, out of 40 possible user care needs, individual healthcare workers and teams identified 9.3 and 10.3 needs respectively. Upon conflicting viewpoints between patients and healthcare workers, teams sided with healthcare workers, indicating that patient views may be under-represented in daily practice. Conversely, patients identified only 4.3 needs, perhaps signifying they are not fully aware of their underlying needs. It is important to consider the inclusion criteria of this study – all participants were adults with a psychiatric illness and a ‘significant functional impairment’. This presents the dilemma of assessing the degree to which a patients’ cognitive ability affects perception of needs. Patients whose opinions were not sided with were often those with severe cognitive problems, therefore their views may have been overridden for their own benefit. Healthcare workers need to achieve a balance between exercising expertise and valuing insight of user experience. It is important to note that this study only represents the Norwegian care system and the participants selected were those well enough to participate. Those with more severe conditions may therefore be under-represented, reducing the internal validity of this study.
Methods of user involvement
Mental health service consumers unite to form ‘user groups’ - non-profit organisations aiming to ensure the views of consumers are addressed when looking to improve services. Representatives from these groups participate in different areas of service improvement.
Crawford et al (2003) found that 11 out of 17 UK trusts involved in a cross-sectional study of user involvement methods were able to list numerous changes resulting from user involvement. This study found 9 out of 17 trusts had user representatives attending service development meetings, and 7 out of 17 had users present at clinical governance meetings. Representatives were less likely to attend meetings examining complaints or discussing drugs and therapeutics. The same study found satisfaction surveys and participation in audits among the most common methods of involvement. Surprisingly only 1 out of the 17 trusts involved users in staff training evaluation programmes, despite that this action is recommended by the national guidelines for user involvement. This study was conducted in Greater London only and may consequently lack external validity, as different methods of user involvement may be utilised in different areas. All participants belonged to a user group, and may therefore be more comfortable with their mental illness and with promoting user involvement. The study also reported “more than half of trusts feel that ethnic minority service users are insufficiently represented”. This is a disadvantage of assessing involvement of user groups as a whole, and may indicate that trusts as of yet are far from accounting for cultural differences.
A focus group study by Lester et al (2006) highlighted the importance of patient involvement in primary care mental health. Three themes emerged from their research as fundamental for appreciating user involvement: ‘the value of lived experience’, ‘decision-making in the consultation’ and ‘the importance of paid work’. One patient stated, “The things, the experiences, the emotions, the feelings that we as people suffering from mental distress go through simply aren’t experienced by people in good health”. From this a collaborative view emerged that users could partake in running patient-led centres where, alongside providing information on alternative treatments and coping methods, a form of peer support would be provided for patients. Users stated that they did not feel involved in treatment, with a short consultation followed by a GP prescribing medication. They felt unable to challenge the GP for fear of lacking medical knowledge and being seen as ‘difficult’ and dismissed. GPs countered this by claiming there are few alternative treatments available. Time was also a key factor – users with positive experiences described a lengthy consultation which explored feelings and behaviours. The third key theme was ‘paid work’. The stigma associated with having a mental illness can make it difficult for patients to hold a steady job and can result in social isolation. Working with a primary care team would both provide an income and allow users to share their experience and support patients. All the patients in this study volunteered to participate, which may affect the extent to which the findings can be generalised. A positive element of this study is that the focus groups involved both patients and health care professionals, providing insight into GP and nurse views of user involvement. From this some barriers to user involvement emerged, which are further discussed in a later section.
Hopkins et al (2009) reviewed ten studies of user experience of inpatient mental health care and concluded that individual attention from healthcare staff, namely nurses, is most valued and expected by patients. Nurses reported that they did not feel equipped with the knowledge or skills necessary to interact with mental health patients. This may explain why their focus on communication decreased past the stage of admission into hospital. It is necessary for this attitude of maintaining minimal contact with inpatients to be eliminated from the mindset of health staff, perhaps through increased training. This may enable staff to see past a medical condition and interact with a user in the same manner as with any patient. This is where user involvement plays a large part. The opportunity for staff to speak to and learn from experienced users is invaluable, and users can provide further insight into their expectations. After all, it is only if these expectations are met that a user is satisfied with their care; this would in turn aid recovery and decrease the length of the patient journey. Meeting patient needs would benefit health care organisations as it is likely that patients would be more compliant, increasing efficiency. A limitation of this review is that it focused on inpatient studies, which may reveal user expectations differing from those of outpatients. Furthermore, 6 out of the 10 studies reviewed had few participants therefore cannot be generalised for the entire population.
Barriers to user involvement
Lammers and Happel (2003) conducted interviews with 15 users, discussing their involvement in major health service changes. From these interviews a significant barrier to involvement emerged – that service providers themselves are in fact barriers. They appear to dismiss the value of user experiences since users do not possess the medical expertise required to fully understand a condition. One consumer stated that despite being a Board member for certain support services, her views were still dismissed. Another claimed that the structure of Board meetings is such that consumers cannot participate –members discuss concepts and ideas that the consumer lacks knowledge of, and speak in advanced language that users struggle to comprehend. Crawford’s user groups also identified ‘staff resistance’ as a barrier to user involvement – this appears to be a recurring theme across the literature.
As mentioned earlier, Crawford et al (2003) found the extent to which a user group represents all consumers a significant barrier. Tait and Lester’s review also identified ‘resistance to the idea of users as experts’ as a barrier, further recognising ‘concerns over representative-ness’, claiming that users willing to be involved differ in personality from the majority. This indicates the need for a greater effort in involving users of all ethnicities and backgrounds. The same review identified ‘lack of information’ as a barrier; this reinforces that patients find it difficult to partake in decision making as well as service planning due to a lack of knowledge.
A barrier emerging from GPs in Lester et al’s focus groups was the threat of violence. Although only expressed by a minority of the practitioners, it may be an understated influence on GP’s willingness to view users as equals and part of the workforce. Another emergent issue was the ‘unpredictable nature of patients with serious mental illness’ (Lester et al 2005). Hiring users as paid employees was seen as risky due to a potential lack of reliability; volunteer work remained the preferred option amongst practitioners.
Limitations of studies assessing user involvement in mental health care
These studies are often conducted in specific areas or within certain trusts, limiting external validity as they may not be generalised to other locations.
Many of the studies referenced involved volunteer users, who may have a different attitude towards their mental health care than other users. They may be more vocal and be especially dissatisfied with the current structure of the care system, and hope to act as agents for change. This would create a biased response. Many of these studies also have few participants and lack representatives of ethnic minorities, so the views expressed may not represent the majority of users.
Much of the current literature assesses involvement at a specific point in time. It may be valuable to conduct longitudinal studies as user involvement can, in fact, vary throughout the manifestation of the condition. As users become more comfortable with their situation they may feel more encouraged to discuss it and partake in service improvements.
This paper demonstrates a clear benefit to users and healthcare professionals of user involvement in mental health care services. It is vital to establish a culture conducive to collaboration in order to achieve excellence in service.
Additional training can be provided for staff members to aid their interaction with mental health users and to ensure they possess the skills required to objectively partake in service improvement plans whilst acting upon relevant suggestions from users. Involving users in daily practice as paid workers or volunteers running support group, can help reduce effects of stigma associated with having a mental illness, and bridge the gap between users and healthcare professionals. This, in turn, would aid in reducing the fear of violence expressed by a number of GPs, as well as increase appreciation of patient experience. Users may also be more comfortable expressing their views and perhaps gain medical knowledge regarding their condition.
A selection of these methods is already under implementation (Tait & Lester 2005). Although findings from many studies comprising current literature appear to correlate, there is a need for replication with a larger sample size more representative of the general population.
There is great scope for further research within this field. Varying involvement between users with different psychological conditions could be investigated, as well as contrasting levels of involvement between users of differing ethnicities. User expectations may also differ between cultures. There appears to be a gap in the literature regarding sustainability of outcomes of user involvement projects. It may be the case that projects involving users succeed initially and then proceed to fail. There is ample research suggesting benefits of user involvement; it is vital, however, to ascertain to what extent this is beneficial.
Crawford MJ, Aldridge T, Bhui K, Rutter D, Manley C, Weaver T, Tyrer P, Fulop N (2003). User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers. Acta Psychiatr Scand. [online] 107: 410–414. Available from: http://onlinelibrary.wiley.com/doi/10.1034/j.1600-0447.2003.00049.x/pdf Accessed: 20/12/10
Great Britain. Health and Social Care Act 2001: Elizabeth II. Chapter 11. (2001) UK, The Stationery Office. Available from: http://www.legislation.gov.uk/ukpga/2001/15/pdfs/ukpga_20010015_en.pdf
Hansen T, Hatling T, Lidal E, Rudd T (2004). The user perspective: respected or rejected in mental health care? Journal of Psychiatric and Mental Health Nursing. [online] 11: 292-297. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2850.2003.00717.x/pdf Accessed: 20/12/10
Hopkins JE, Loeb SJ, Fick DM (2009). Beyond satisfaction, what service users expect of inpatient mental health care: a literature review. Journal of Psychiatric and Mental Health Nursing [online] 16: 927–937. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2850.2009.01501.x/pdf Accessed: 20/12/10
Lammers J, Happel B (2003). Consumer participation in mental health service: looking from a consumer perspective. Journal of Psychiatric and Mental Health Nursing. [online] 10: 385-392. Available from: http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2850.2003.00598.x/pdf Accessed 20/12/10
Lester H, Tait L, England E, Tritter J (2006). Patient involvement in primary care mental health: a focus group study. British Journal of General Practice. [online] 56: 415–422. Available from: http://ukpmc.ac.uk/articles/PMC1839015;jsessionid=7FBDF89F646310899406D56865A8780D.jvm4 Accessed 20/12/10
Tait L, Lester H (2005). Encouraging user involvement in mental health services. Adv. Psychiatr. Treat. [online] 11: 168-175. Available from: http://apt.rcpsych.org/cgi/content/abstract/11/3/168 Accessed: 20/12/10
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