User involvement – myth or reality?

A two-point survey (1992 and 2005) of users’ awareness of their treatment and ward milieu preferences.

Pemmaraju, George, Oyebode, Patel & Doshi

Abstract

Background: User involvement in mental health has gained momentum in the UK over the past decade. However, an often-voiced criticism is that it is lost in translation from theory into practice. Aims: Our primary aim was to assess the effectiveness of implementation of user involvement in clinical practice, as measured by users’ awareness of their treatment and their ward milieu preferences. We also aimed to detect any changes in these over a 13-year period (1992 to 2005), hypothesising that the increasing emphasis on user involvement over the past decade might have resulted in positive changes for patients. Method: We interviewed 50 patients each in 1992 and 2005 (2 separate samples), admitted to a psychiatric hospital and assessed their awareness of treatment and ward milieu preferences (single – sex vs. mixed - sex wards). A semi-structured questionnaire was used, supplemented with information from patient case notes. Results: Significantly more patients in 2005 than in 1992 were able to name side effects of their medications and more patients had a say in their treatment. More patients in 2005 also reported feeling threat to the safety of others (p=0.001). The majority in both the samples (in 1992 and 2005) preferred mixed-sex wards and wards run by mixed-sex staff, and wanted single-sex toilets-there being no significant changes over the 134-year period. Conclusions: User involvement in mental health has resulted in considerable benefits at patient and service levels, but much more needs to be done if this concept is to translate from rhetoric to reality.
Key words: choice, in - patient psychiatry, treatment awareness, user involvement and ward preferences.

Introduction

‘User involvement’ – is this just a fashionable, politically – correct concept that is over used in recent psychiatric literature or does this really translate into positive, demonstrable change in day –to-day clinical practice? Are psychiatric patients, these days, genuinely listened to and understood?

The concept of user involvement in mental health has gathered momentum, and over the past 20 years has been formalised in policy terms (Department of Health, 1991 & 1994, NHS Management Executive, 1992). Tait and Lester (2005) in summarising the recent policy context of mental health service user involvement quite rightly point out that ‘patient and public involvement in health care has become one of the central tenets of New Labour’s NHS modernisation agenda.’ Users can be effectively involved in not just aspects relating to their individual treatment plans but also in areas such as research, education and training, and service development. Some of the benefits of user involvement in mental health are that it helps reduce social exclusion, may have some therapeutic benefits and helps clinicians understand mental illnesses better (Tait and Lester, 2005).

The concept of user involvement, in principle, requires involvement of users as partners in their own care and tailoring services to meet their preferences. Translation of such idealistic policies and ambitious ideals into practice is crucial if user involvement is to become a reality.

We identified two outcome variables that help measure the effective implementation of user involvement in practice: Users’ awareness of their own treatment and their ward milieu preferences. We then studied these two aspects of user involvement at two time points—1992 and 2005, in a sample of 100 psychiatric in-patients. We hoped to detect any changes over this 13 - year period, hypothesizing that the increasing emphasis on the subject might have resulted in a positive focus on users (as partners in care), their choices and acknowledgement of their preferences.

Methodology

Design

We carried out this study in two phases: Phase I (1992) and Phase II (2005).

The measures (information collected from patient interviews using a questionnaire and from patient case notes), setting (four mixed- sex acute psychiatric inpatient units) and sample size (50 patients each, different samples) were the same across the two time points of the study.

Sample and Procedure
Patients were recruited from in- patient units (4 mixed- sex wards) at the Queen Elizabeth Psychiatric Hospital (QEPH) in Birmingham. Patients were selected (convenience sampling) over a 2 - week period, from recent admissions to the 4 wards until a sample size of 50 was reached. The inclusion criteria included any patient who had been admitted to the ward in the past 4 weeks and was willing to participate. Patients who were too unwell (very agitated or floridly psychotic or depressed) or uncooperative (those who refused to participate) were excluded from the study. All the interviews were conducted individually by one of the authors, on the ward, in convenient settings. Informed consent was obtained after discussion about the aims, nature, and the purpose of the study. The confidential nature of the information gathered was also explained.

Measures
A pre-designed questionnaire was used to collect information in the following areas: sociodemographic information, clinical and illness-related variables, patient’s knowledge of treatment (such as type of medication, side effects, choice etc) and finally, their ward [single-sex vs. mixed-sex] preferences. Some questions were open-ended and patients were encouraged to talk about particular views and experiences. Supplementary information was gathered from patient case notes, where necessary. Each interview lasted between 15 and 45 minutes, as determined by factors such as patient co-operation and mental state.

Analysis
Quantitative results were analysed using SPSS Version 11.0, with input from a statistician. Means, standard deviation, chi square tests and P- values are used to present the descriptive statistics. Two - tailed tests are used and a p-value of 0.05 or less is regarded as significant. The qualitative results are not discussed in this paper.

 

Results


Fifty patients each participated in the study in 1992 and 2005.

Demographic information
The mean age of the 1992 sample was 39.69 years (s.d =12.6yrs) and that of the 2005 sample was 39.47yrs (s.d =13.49yrs). There were slightly more women than men in the 1992 sample (Male/Female ratio = 0.9:1) and more men than women in 2005 (M/F ratio = 1.1:1). Majority of both the samples were unemployed: 88.2% and 85.7% respectively, and the ethnicity break up was as follows: Caucasian (66% and 56%), Afro-Caribbean (20% and 18%) and Asian (8% and 8%). The samples did not differ significantly on any demographic variable.

Clinical information
A summary of the clinical details including diagnostic categories, legal status on admission, number of previous admissions and the total duration of admissions is given in Table I. Participants were asked a series of questions (see Table II) regarding their current treatment, which could be answered in know/don’t know or yes/no format. See Table II for patient responses and statistical significance tests.

Table I. Clinical variables

Clinical variables

1992 (percentages)

2005 (percentages)

Diagnosis

Schizophrenia

Bipolar affective disorder

Major depressive disorder

Others

Legal Status

Informal

Formal

Number of previous admissions (median &range)

Total duration of previous admissions (in days) [median & interquartile range]

38%

10.0%

20%

32%

58.8%

41.2%

2 [0-12]

225 [337.5]

44.9%

12.2%

8.2%

26.5%

44.9%

55.1%

2 [0-12]

150 [325]

 

 

What has changed over the 13-year period (1992 to 2005)?

Users’ awareness of treatment

As compared to 1992, significantly more patients in 2005 were able to name side effects of their medications – only 2 patients could list 3 side effects in 1992, whereas 19 could in 2005. Similarly, significantly more patients in 2005 reported having had a say in their treatment (p=0.018). Although not statistically significant (p=0.195), more patients in 2005 knew the names of their medication as compared to the 1992 sample. For other responses in this section, see Table II.

Ward milieu preferences and perceptions of safety

Participants were asked whether they preferred single-sex or mixed – sex wards. Interestingly, there was little change in patients’ ward milieu preferences over this 13-year period: majority in both the 1992 and 2005 samples preferred mixed-sex wards but with single-sex toilets. On assessing patients’ feelings of vulnerability and threat to their own and others’ safety, significantly more patients (p=0.001) in 2005 reported feeling threat to the safety of others (22/45 vs. 4/46).

What hasn’t changed over the 13-year period (1992 to 2005)?
Ward milieu preferences
Please see Table II for treatment awareness variables on which there were no significant changes between the 2 samples (1992 and 2005).

Ward milieu preferences and perceptions of safety
When asked whether they prefer single-sex or mixed-sex wards, surprisingly sixty six out of one hundred patients preferred mixed-sex wards (36/50 in 1992 and 30/50 in 2005; p=0.151). Yet another interesting finding was the number of patients who wanted a choice in the kind of ward (single-sex or mixed-sex) they were admitted to –48 out of 100 patients (38% in 1992 and 58% in 2005). Despite the above findings –i.e. majority of patients not wanting a choice in the type of ward and not preferring single-sex wards, majority of patients (60/100) preferred single-sex toilets on their wards. The very large majority (83.5% of the combined sample of patients) also preferred wards to be run by mixed-sex staff. Three questions addressed patients’ feelings of vulnerability and threat to their own and others’ safety – thirty out of ninety one (33%) felt vulnerable on the ward and 33/91 (36%) perceived threat to their own safety. Four respondents in 1992 and 5 in 2005 failed to answer the above questions and hence the total sample size of 46and 45 [instead of 50] respectively.


Table II. Users’ awareness of treatment

 

Questions regarding their treatment

  1992

2005

P-value

1. What is your medication called?                  

                                       Know

                                 Don’t know

2.List three possible side effects

                         named 0 side effects

                         named 1 side effect

                         named 2 side effects

                         3 side effects            

3. What are you treated for?

                                           Know

                                           Don’t know

4. Did you agree to take treatment?                            

                                                      Yes

                                                       No

5. Do you think treatment will help you?                                              Yes

                                                       No

6. Are you satisfied with your treatment?                                     Yes

                                                       No

7. Have you had a say in your treatment?                                     Yes

                                                       No

 

  72.3%

  27.7%

 45.7%

 45.7%

 4.3%

 4.3%

 79.2%

 20.8%

 

 

89.4%

 10.6%

 

 

 79.5%

20.5%

 

 77.1%

 22.9%

35.4%

 64.6%

 

  85.4%

  14.6%

 

 17.9%

 15.4%

 17.9%

 48.7%

 73.2%

 26.8%

 

 

81.4%

 18.6%

 

 73.8%

 26.2%

 66.7%

 33.3%

62.5%

 37.5%

 

 

0.195

 

0.00

0.33

 

0.22

 0.35

 

0.19

 

 0.018

 

 

Discussion


Strengths and Limitations
The major strengths of this study are the 13-year apart time point sampling design and the comprehensive and multi-source generation of information [from case notes and patient interviews]. It is note worthy that between 1992 and 2005, there has been a significant culture and policy shift in the field in the field of user involvement in mental health, and consequently it would only be fair to assume that our study would verify if these lofty ideals of user involvement in mental health had translated into practice. The limitations include: convenience sampling and the consequent introduction of selection bias and the use of different interviewers across the 2 phases of the study. However, use of a semi-structured questionnaire and close working among all interviewers would have minimized any gross inter-rater variability. Some of the findings regarding patients’ awareness of treatment need to be interpreted with caution. Patients who have been ill for longer may know more about their illness and treatment, as compared to those in the first few weeks of their illness, due to various logistic and illness-related variables.

What has changed over the 13-year period (1992 to 2005)?

Users’ awareness of treatment
Given that the majority of patients in our study were on antipsychotics (>60%), it has to be emphasised that our results are in contrast to earlier studies in this field. The National Schizophrenia Fellowship (now Rethink), in a survey (2000) of mental health service users found that only 38% had a say in their choice of antipsychotic. In a much smaller survey, Olofiniana and Taylor (2005) found that 50% of patients had received no information on their medication and that 90% had no choice in the antipsychotic they were prescribed. These findings are in breach of the NICE guidance on use of atypical antipsychotics in schizophrenia (2002), which recommends that patients should be involved in a discussion and that any decision regarding treatment should be arrived at jointly. However, our results indicate that our practice is in keeping with the ethos of NICE. We also noted that significantly more patients in 2005 (62.5% vs. 35.4%) reported having had a say in their treatment. Although this marks a significant (p =0.018) improvement in practice, in keeping with the NICE recommendations and the wider policy context of user involvement, there is still room for improvement. The interviewers noted that while on the wards often those patients who reported not having had a say in their treatment were those who were not well enough to be given (and then to have retained and recollected) information, or those who lacked insight. From a prescriber’s perspective, it was important to note that although significantly more patients in 2005 could list side effects of their medications, 18% of the sample in 2005 still could not name even one side effect of the medication they were prescribed. Although the above-noted explanation is feasible, on a more honest note, doctors need to take more responsibility. This involves taking time to explain and discuss the potential side effects and treatment plans with all their patients. This is particularly important in psychiatric practice, as often, it lays the foundation for a strong, trusting therapeutic alliance and improved treatment compliance. There is also evidence to suggest that informing patients of long-term side effects does not decrease compliance (Chaplin & Kent, 1998). But as our study sample was small and only from one mental health unit, these findings may not be entirely representative of the present – day practice across various in - patient psychiatric units in the UK.

Ward milieu preferences – single or mixed – sex wards?
Here, some interesting results deserve special mention and warrant further discussion. It is only reasonable to assume that user involvement implies giving patients a choice in deciding the kind of ward they are admitted to. There is a belief underpinning this assumption (one that has not been formally tested out) that most if not all patients want a choice. Our findings do not justify this widely – held notion re: choice. 52/100 patients said they did not want a choice in the kind of ward they were admitted to. Of course, given the study design, we did not explore reasons for this and hence it would be speculative to look for clear answers. It might well be that, at least for some patients, at a time that they are ill, with compromised decision – making capacity, and they may prefer their family or the treatment providers to make a decision on their behalf and in their best interests. This is not to say that those patients who can be involved in an informed discussion and decision-making process should be denied a choice. Looking at the same issue from a clinician’s perspective, practising psychiatry in the UK today, a simpler explanation emerges: in many of today’s in patient wards, patients are not given a choice simply because there is none – there are always restrictions on bed availability and ward type. While this is true for all psychiatric patients, it is even more so for patients admitted involuntarily under the mental health act.

Our findings indicate that from the patients’ perspective what seem to be more important than being in a single – sex ward was the provision of single – sex toilets. Sixty percent of patients stated a preference for single – sex toilets. The Department of Health document on ‘Safety, privacy and dignity in mental health units’ (2000) provides guidance to NHS Trusts on ensuring good standards of safety, privacy and dignity of mentally ill patients in hospitals – with a special emphasis on aspiring to provide single-sex accommodation to all patients in mental health units. At a macro-level, while waiting for government initiatives to provide single – sex wards for all patients to materialise, it may be simpler and cost-effective to ensure the provision of single – sex toilets on all wards.

Significantly, more patients in 2005 (p=0.001) reported perceiving threat to their own and others’ safety. There might be a more benign, yet important, explanation for the increasing number of patients in 2005 perceiving feelings of vulnerability, threat to own and others’ safety. Given the massive policy shift in the practice of psychiatry from hospital-based towards community psychiatry, there has ever since been limited number of bed spaces in inpatient units. This also often means that inpatient psychiatric beds are reserved for the very ill patients who cannot be managed in the community. Therefore, it could be argued that the more ill patients are, higher the risk of violence. Hence we argue that gender segregation on its own is unlikely to ensure the safety of patients: this matter is far from that straight forward and warrants further exploration. These findings echo those from a recent study by Mezey et al (2005) – in a study of the safety of women in single-sex and mixed-sex medium secure units, they noted that women in both settings reported high levels of physical violence. Women in single-sex wards reported threats and abuse by other women patients and many preferred being in a mixed-sex ward. However, two limitations of the above study limit the generalisability: the small sample size (31 patients) and the setting (forensic, medium-secure units).

What hasn’t changed over the 13-year period (1992 to 2005)?

Users’ awareness of treatment
Overall, the findings regarding patients’ awareness of treatment were positive and encouraging: majority of patients knew the names of their medications (78.9%), what they were treated for (76.2%), had agreed to take treatment
(85.4%) believed treatment would help them (76.7%) and were satisfied with their treatment (71.9%) (percentages are for the combined sample [1992 and
2005], n=100, there were no significant inter-sample differences on these responses). It also has to be noted that that there were no significant differences in responses to these questions between 1992 and 2005 – this would mean that good practice (i.e. informing and involving users in their treatment) was being followed. Of course, the underlying reasons for these positive trends could be prescriber-related or patient – related, or a combination of the two. It could be that all patients who were admitted to these wards (at the two time points) were well informed of their treatment and were involved in the preceding discussions about their treatment. It could also have been that as the patients in our study were self-selected, only those who were well enough mentally and those who knew about their illness and treatment participated. Nonetheless, these results suggest that user involvement measured using the measure of patients’ treatment awareness is not just mere rhetoric.

Ward milieu preferences and perceptions of safety
Yet another widely held belief that we dispute based on our findings is the one about patient preference for same – sex staff on the wards. It is often reported that female patients prefer being on wards staffed by women. However, in our study 83.5% of patients did not prefer same – sex staffed wards. Although speculative, it could be argued that our study sample did not feel vulnerable or threatened being cared for in mixed-sex wards and by male or female staff.

An ongoing debate at clinical and policy levels is the vulnerability and safety of patients (especially women) in mixed-sex wards. Research so far, albeit minimal, supports the assertion that female patients on mixed-sex psychiatric wards are vulnerable and unsafe (Barlow & Wolfson, 1997; Thomas et al, 1995). Hence, the UK government has over the last decade or so launched a series of initiatives to provide single-sex wards for psychiatric patients (Department of Health, 1997, 2003). We did not perform a gender-wise sub analysis of our results, and this precludes definitive inferences from being drawn. But the interviewers did not see evidence of an obvious difference in the views of male and female patients in our study. Across the two sexes, we noted that 33.1 % patients reported feeling vulnerable on the ward and 36.5% reported threat to their safety. 26/91 patients also reported feeling threat to the safety of others on the ward. These are alarming findings and indicate unacceptably low levels of patient perception of safety. It has to be noted that
these may not be reflective of actual incidents of threat and violence, and also that these patient-accounts were not corroborated.

Conclusions and future directions
In summary, one thing is clear: user involvement in mental health is a sensible theoretical construct with laudable benefits. In keeping with the national policy initiatives, significant progress has been made in a positive direction, but much more needs to be done for all to embrace this concept. It is only then that user involvement will be translated from rhetoric to reality.

Declaration of interest: None

Acknowledgements: We thank all service users who participated in the survey. We also acknowledge the input of Dr Sayeed Haque (Statistician, University of Birmingham) in the statistical analysis.

References


Department of Health (1991). The Patient’s Charter. London: Department of Health.

Department of Health (1994). Working in Partnership: Report of the Review of Mental Health Nursing. London: Department of Health.

NHS Management Executive (1992). Local Voices: The views of Local People in Purchasing for Health. Leeds: NHS Management Executive.

Tait, L., & Lester, H. (2005). Encouraging user involvement in mental health services. Advances in Psychiatric Treatment, 11, 168-175.

National Schizophrenia Fellowship (2000). A Question of Choice. London: NSF.

Olofinjana, B., & Taylor, D. (2005). Antipsychotic drugs – information and choice: a patient survey. Psychiatric Bulletin, 29, 369-371.

National Institute for Clinical Excellence (2002). Guidance on the Use of Newer Atypical Antipsychotic Drugs for the Treatment of Schizophrenia. London: NICE.

Chaplin, R., & Kent, A. (1998). Informing patients about tardive dyskinesia. Controlled trial of patient education. British Journal of Psychiatry, 172, 78-81.

NHS Executive (2000) Safety, Privacy and Dignity in Mental Health Units. London: Department of Health.

Mezey, G., Hassell, Y., & Bartlett, A. (2005). Safety of women in mixed-sex and single-sex medium secure units: staff and patient perceptions. British Journal of Psychiatry, 187, 579-582.

Barlow, F., & Wolfson, P. (1997). Safety and Security: A survey of female psychiatric in-patients. Psychiatric Bulletin, 21, 270-272.

Thomas, C., Bartlett, A., & Mezey, G.C. (1995). The extent and effects of violence among psychiatric inpatients. Psychiatric Bulletin, 19, 600-604.

Department of Health (1997). The Patient’s charter: Privacy and Dignity and the Provision of ingle Sex Accomodation. NHS Circular EL 97(3). London: Department of Health.

Department of Health (2003). Mainstreaming Gender and Women’s Mental Health Implementation Guidance. London: Department of Health.

Authors

*Dr Vinuthna Pemmaraju, MRCPsych, DCP, DRCOG
Specialist Registrar in Child and Adolescent Psychiatry
Sandwell CAMHS,
48 Lodge road, west Bromwich
B70 6NY
Ph: 0121 612 8499
E-mail: vinuthna@doctors.org.uk

Dr Sanju George MRCPsych
Consultant in Addiction Psychiatry
The Bridge
Chelmsley wood
B 37 7UR
E-mail: sanju.george@talk21.com

Professor Femi Oyebode MD, PhD, FRCPsych
Consultant in Liaison Psychiatry
Queen Elizabeth Psychiatric Hospital
Birmingham B15 2QZ
E-mail: Femi.Oyebode@bsmht.nhs.uk

Dr Abdul Patel MRCPsych
Consultant in Old Age Psychiatry
Queen Elizabeth Psychiatric Hospital
Birmingham B15 2QZ
Email: abdul.patel@bsmht.nhs.uk

Dr Monica Doshi MRCPsych
Consultant in General Adult Psychiatry
Warwick Medical School
Coventry
CV4 7AL
Email: monicadoshi@blueyonder.co.uk

* Correspondence author

First Published May 2007

© Priory Lodge Education Limited 2007

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