Quality of life according to Dutch Long-term Forensic Psychiatric Patients

Written by Ellen Vorstenbosch,
former researcher of the Pompefoundation, the Netherlands

Over the last decade, the duration of treatment in Dutch clinical forensic psychiatric facilities has increased considerably, leading to an average duration of over nine years. Furthermore, there is a growing group of forensic psychiatric patients who have insufficiently benefited from the offered treatment methods and who are still deemed to pose a high risk for society (De Kogel, Verwers, & den Hartogh, 2005; Dienst Justitiële Inrichting, 2009; Expertisecentrum Forensische Psychiatrie, 2009; see also Salize & Dressing, 2007). A significant proportion of these patients may require long-term, potentially life-long, forensic psychiatric care (Reed, 1997; Harty et al., 2004). In the Netherlands, a patient’s main therapist can advise upon placement in a long-term forensic psychiatric facility if the risk of recidivism did not diminish sufficiently after two serious treatment attempts in two different forensic psychiatric hospitals. Subsequently, an independent committee of multi-disciplinary experts decides if placement in a long-term forensic psychiatric facility is considered adequate. Of the total Dutch forensic psychiatric population, about 10% currently resides in a specialized long-term forensic psychiatric care (LFPC) ward.

Typical for long-term forensic psychiatric patients is a complex psychopathology, non-compliance in therapy and/or poor learning abilities. Instead of treatment aimed towards re-entry into society, the main goal of long-term forensic psychiatry is to offer care in accordance with the rehabilitation principles. In LFPC, these principles entail psychiatric and medical care, acceptance of stay, and optimising quality of life (QoL) within acceptable boundaries for society. The emphasis no longer lays on risk-reduction and therefore on treatment of dynamic risk factors, but on QoL-enhancement. In every day clinical care, there is a need for practical guidance to achieve this.

Although there is a lack of consensus regarding the definition of QoL, it is generally accepted to relate to an overall ‘sense of well-being and satisfaction experienced by people under their current living conditions’ (Lehman, 1983). Despite its clinical and scientific relevance, QoL-assessment in forensic psychiatry is still uncommon and few QoL-studies have been conducted. Of the studied published, the QoL-instruments used have been questioned for their applicability in forensic psychiatric care contexts.

Forensic psychiatric care environments are restrictive: patients are confined, they lack autonomy, freedom, and a sense of control. There are restrictions on their movement as well as their interpersonal relationships with others, including romantic relationships. Existing QoL measurements have not considered these contextual factors that are unique to LFPC patients. Adequate QoL indicators for LFPC patients should be based on the values, opinions, preferences and expectations of the patients – LFPC patients would need to be consulted in order to capture the concept of QoL adequately for application in forensic psychiatric care contexts.

One longitudinal study of QoL in LFPC involved 40 long stay patients being asked to complete the phrase “Quality of life in LFPC is…”, the results allowed for concept-mapping of the long-term patients’ experiences and their perceptions of these experiences, which they considered important with regard to daily life in LFPC. The resultant statements (items) were clustered in 10 domains on a 2-dimensional graph – the horizontal axis represented material (left) vs. immaterial (right); the vertical axis represented individual (top) vs. collective (bottom). The results are summarized below.

 

Concept Map_Green

 

According to patients the following eight concepts should be included in a QoL instrument for use in forensic psychiatric care contexts.

1) Being treated as a human being (25 items) This domain relates to the treatment of long-term patients by professionals in forensic psychiatric careservice organizations. It emphasizes a humane approach with fundamental human values such as being treated with respect and being taken seriously.

2) Autonomy (10 items) This domain relates to the impact of security on personal liberty, and the complicated balance between need for security and patients’ experience of autonomy and self-determination while under supervision.

3) Mental stimulation (13 items) This domain relates to long term patients’ need for intellectual stimulation, with emphasis on the provision of activities the patient can undertake independently, e.g. reading.

4) Leisure (5 items) This domain overlaps with Domain 3 Mental Stimulation, as patients identified more activities. However, activities identified for Mental Stimulation were predominantly independent activities, activities identified for Leisure included mainly group activities, e.g. sports.

5) Joint activities (7 items) This domains overlaps slightly with Domain 3 Mental Stimulation and Domain 4 Leisure. The accent however moved to more recreational activities, for which the patients depend completely on (the company or participation) of others.

6) Affective social contacts (9 items) This domain relates to feelings of affection and reciprocity experienced through contact with others: loved ones, other patients and, to a lesser extent, staff members.

7) Possible exceptions (4 items) This domain relates to the ability to “bend the rules” when called for, despite written rules and procedures in place within the LFPC service organisation. It is about the allowance to make exceptions for some patients, when desirable and possible. Such exceptions must remain ‘exceptions’, as writing them into the existing rules and procedures for all patients would be impractical.

8) Personal space (9 items) This domain relates to the decoration of long-term patients’ personal space (their room). In general, patients would like to be allowed to decorate their rooms, and for their rooms to be equipped with certain facilities.

9) Unit atmosphere (11 items) This domain relates an atmosphere of ´conviviality´, feelings of belonging through interpersonal contact and safety.

10) Physical space & privacy (5 items) This domain overlaps slightly with Domain 8 Personal Space. It differs as the emphasis here is on the physical aspects of the long-term patients’ personal space (room) and on how others respect that.

The domains identified by the patients in this study show little resemblance with the domains in existing QoL-instruments. More generic QoL-instruments like the WHOQoL-Bref contain irrelevant domains for LFPC patients, such as ‘access to public transport’; more relevant domains, such as ‘contact with staff’ and ‘autonomy’ are not included. The inadequacy of existing QoL-instruments for use in forensic psychiatric care contexts was the motivation to create a new QoL-instrument. The Forensic inpatient Quality of Life questionnaire (FQL), developed here, is appropriate and applicable for use with long-stay patients in long-term forensic psychiatric care. Click here for more information about the FQL.

 

References:

De Kogel, C.H., Verwers, C., &. den Hartogh, V.E (2005). Blijvend delictgevaarlijk. Empirische schattingen en conceptuele verheldering. [Continued dangerousness: emperical estimates and conceptual clarification]. Meppel,: Boom Juridische Uitgevers & WODC, Ministerie van Justitie.

Dienst Justitiële Inrichting (2009). Beleidskader Longstay Forensische Zorg d.d. 19 januari 2009 [Policy framework long stay forensic care]. www.justitie.nl.

Expertisecentrum Forensische Psychiatrie (2009). Langdurige forensisch psychiatrische zorg. Landelijk zorgprogramma voor patiënten binnen de langdurige forensische psychiatrie. [Longstay forensic psychiatric care. National treatment program for patients in longstay forensic psychiatry]. Utrecht: Grafisch Centrum Vanderheym.

Harty, M.A., Shaw, J., Thomas, S., Dolan, M., Davies, L., Thornicroft, G., et al. (2004). The security, clinical and social needs of patients in high security psychiatric hospitals in England. Journal of Forensic Psychiatry & Psychology, 15, 208-221.

Lehman, A. F. (1983). The well being of chronic mental patients. Archives of General Psychiatry, 40, 369–373.

Reed, J. (1997). The need for longer term psychiatric care in medium or low security. Criminal Behaviour and Mental Health, 7, 201-212.