How distress is understood and communicated by women patients detained in high secure forensic healthcare, and how nurses interpret that distress: An exploration using a multi-perspective interpretative phenomenological analysis

ABSTRACT Background The context for this study is the National High Secure Healthcare Service for Women (NHSHSW). This service opened in 2007 following the closure of all other high secure healthcare services for women. Consequently the NHSHSW is the UK’s only facility to provide assessment and treatment for women detained under the Mental Health Act and who are classified as posing a grave and immediate danger to others. Care delivered within the NHSHSW is grounded within the guiding principles of trauma informed environments. This philosophy of care understands that women patients in high secure forensic healthcare experience heightened and usually chronic levels of distress which can be communicated through violent and dangerous behaviour (McMillan & Aiyegbusi, 2009). This group of marginalised women are an important but small group of people with unique experiences. These women patients’ experiences have yet to be explored from the perspective of the women themselves. This is the first study to explore how women patients detained in the NHSHSW experience distress and the impact that distress has on their behaviour from the perspective of the women patients themselves and their care-givers. The care-givers referred to are named nurses whose perspective provides perceptual and interactional context to this study. Insight into the women patients’ experiences is important to ensure that the development of healthcare can respond effectively to need. The importance of service user involvement has been increasingly recognised in general mental health settings. However, user involvement in forensic research is less well developed. This has now been recognised and for the first time this study included the women patients as research facilitators. Method Women patients were invited to attend discussion groups to identify a research project that would form a baseline evaluation for an evidence based development of the NHSHSW. A working party including the researcher and voluntary women patients was established to facilitate the research process. The number of women patients contributing to the working party ranged between eight and thirteen depending on availability. Feminist principles provided a framework for this enquiry (Lykke, 2010). The experiences identified for exploration were: How women patients in high secure healthcare understand their distress. How women patients in high secure healthcare communicate their distress. How nurses interpret the women patients’ distress. Multi-perspective Interpretative Phenomenological Analysis (IPA) was used to analyse semi-structured interviews (Loaring, Larkin, Shaw & Flowers 2015). Twenty three voluntary patient interviews, representing 57% of the overall patient population and thirteen voluntary named nurse interviews took place, representing 34% of the named nurse population. No participants dropped out or withdrew their contribution. Findings Themes regarding the women patient participants’ understanding and communication were identified as: Observable behaviours and responses; Blocks to getting help; Change over time; An entity to be endured; An emotional experience; A physical experience; Being alone. The themes identified from the nurse interviews were: Perception of the distress experience. What influences my response and what is expected of me? The patient and the nurse interviews evidenced differences in understanding related to the women patients’ experience of distress. The women patients placed emphasis on the physiological/sensory aspect of their distress, whereas nurses placed emphasis on the emotional aspect of the women patients’ distress. The implication is that at times of heightened distress the women patients did not feel they were understood. The findings also highlighted areas of unmet need including family involvement in care and a perceived lack of support to enhance family contact. In addition loneliness was emphasised as a significant stressor for the women patients as was being perceived as an on-going risk of harm. All the findings were validated by the participants and subject to peer review. Conclusion This study provides the first evidence base for healthcare practice specifically for women patients detained in the NHSHSW. This is also the first study to involve the women patients in the NHSHSW as co-facilitators of research. This experience was described as empowering by the women patients who took part and whose involvement ensured that the research subject was relevant and meaningful. The depth of the women patients’ involvement has set precedents for policy, procedure and practice development within the NHSHSW and evidenced the women patients’ ability to be co-producers of the services they use. The study was conducted for women by women and as such was guided by feminist principles seeking the right to provide services based on women patients’ needs and experiences. As a consequence this study has made a unique and significant contribution to available literature and the development and provision of services for women detained in high secure care. The study originally aimed to provide an evidence base for the development of the NHSHSW; however, continued interest from lesser secure services clearly demonstrates the applicability of the findings to services beyond the NHSHSW. Limitations There were limitations to this study which could have influenced the findings. The researcher was known to the patient and nurse participants. Established relationships between researchers and participants have the potential to bias an outcome; however it can also provide a baseline of trust. Service user involvement as both researcher and participant potentially allows participants to purposefully respond to questions with the aim to confirm their original pattern of thinking rather than exploring a concept to uncover new findings. The balance of findings in this research suggests that while some bias can be argued it did not invalidate the findings.