Consumers’ and their supporters’ perspectives on barriers and strategies to reducing seclusion and restraint in mental health settings

Additional keywords: consumer voice, lived experience, qualitative research, service user perspective.

Seclusion and restraint are interventions currently permitted for use in mental health services and other settings to control or manage a person’s behaviour. Seclusion generally refers to the deliberate confinement of a person alone in a room or area that cannot be freely exited. Restraint may encompass the use of bodily force (physical restraint) or a device (mechanical restraint) to control a person’s freedom of movement. Less commonly, the term ‘restraint’ is used to refer to the use of medication (chemical restraint) to control a person’s behaviour rather than to treat a mental disorder, and ‘emotional restraint’ whereby consumers feel constrained from expressing their views openly and honestly to staff for fear of the consequences.¹

In Australia, serious concerns about the use of seclusion and restraint in mental health care have been raised at least since 1993,² and in 2005 all Australian health ministers agreed to reduce the use of seclusion and restraint.³ Several studies have noted adverse consequences for those subjected to seclusion and mechanical restraint^4–9 and raised concerns with human rights breaches.¹⁰ Many mental health practitioners, consumers and family members, friends and other supporters (supporters) have also embraced the aim to reduce and, where possible, eliminate seclusion and restraint.¹

The United Nations Convention on the Rights of Persons with Disabilities¹¹ details the human rights of those with disabilities and is a current driver for policy and legislative change to reduce all restrictive and coercive practices in countries such as Australia that have ratified this convention. In Australia, the federal government established the National Mental Health Commission in 2012 to provide independent advice regarding mental health issues and policies. In its first year the Commission made 10 recommendations for action, the third being: ‘Reduce the use of involuntary practices and work to eliminate seclusion and restraint’.¹² It also called for all jurisdictions to provide regular data at a service agency level to enable national data collection. Following this report, in 2013 the Commission established the National Seclusion and Restraint Project.

There is minimal research evidence to inform the changes in practice required to support this policy direction and reduce the use of seclusion and restraint. Multiple factors influence how often and why these practices are used and their definition, use and oversight vary across and within jurisdictions. Consumer perspectives are reported in a minority of studies internationally. Most discussion indicates that consumers want to see a reduction in the use of seclusion and restraint in the context of the trauma and distress they generate.^5,13 Many consumers do not think the use of seclusion and restraint is justifiable.^14,15 There do not appear to be any studies focused on the views of the supporters of consumers regarding seclusion and restraint and its reduction or elimination. Some studies with partial relevance consider supporters’ views on restrictive practices from the Australian disability sector¹⁶ and in relation to the use and revocation of community treatment orders.^17,18

As part of a larger study conducted by the Melbourne Social Equity Institute, The University of Melbourne, and funded by the National Mental Health Commission, five focus groups for consumers and five focus groups for supporters were conducted in four capital cities and one regional centre. This article analyses the perspectives of focus group participants related to barriers to reducing seclusion and restraint and the strategies for reducing these practices.

The project obtained ethics approval from The University of Melbourne (Ethics ID 1340647).

Five focus groups for family members, friends and other supporters (supporters) and five focus groups for people with lived experience of seclusion and restraint (consumers) were conducted. This was a convenience sample, although some purposive sampling was achieved by holding the focus groups in four Australian state capitals and a fifth group being held in a regional city to enable people living in that city, or the surrounding area, to attend. The focus groups did not attempt to have a representative sample; rather, the intent was to sample people who could contribute data from direct experience. This overall research design deliberately resourced focus groups with consumers and supporters placing those experiences at the centre of the investigation. Focus groups were included in the research design because they are a particularly good method for generating discussion and stimulating ideas.¹⁹ In-depth information and ideas related to the prevention of seclusion and restraint were elicited from the vantage point of people with direct experience of those interventions. Focus groups enabled the voices of consumers and supporters, which are relatively marginal in the research to date, to be highlighted in this research. It was expected that this would complement a concurrent nationwide online survey recruiting all stakeholders.

The supporter focus groups consisted of 36 participants (29 women, seven men) who had experienced a family member or person close to them being secluded or restrained. These included parents, siblings, marital partners and two people who had advocacy roles. The consumer focus group consisted of 30 adults (13 men, 17 women), all of whom had either experienced seclusion or restraint directly, witnessed these practices as in-patients or were consumer advocates who had directly supported people who had experienced seclusion and restraint.

The focus groups were all conducted in English, but participants indicated a variety of ethnic and cultural backgrounds. The participants ranged in age from 20 years old to one participant who was over 70 years of age. No Indigenous Australians attended, but people involved in supporting Indigenous people did attend. Participants self-selected and opted into the groups after receiving information through peak bodies and support services (including Indigenous health organisations) in each state where the focus groups were held. The facilitators had a brief discussion with each potential participant to confirm their eligibility to take part before the focus groups. Participants received an A$25 shopping voucher to express appreciation for their attendance.

The focus groups were conducted by an experienced qualitative researcher and mental health practitioner (LMB) and a consumer academic (CER). The involvement of a researcher with lived experience was a deliberate strategy to enable and support open and safe discussion of this sensitive topic. Although participants were reassured they were not being asked to speak of their personal experiences, many chose to share their direct experiences, and a facilitator who shared personal experience was considered to contribute to participants’ experiences being validated.

The overall aim of the focus groups was to give people an opportunity to share their perspectives as to how seclusion and restraint could be reduced or eliminated. Participants discussed their understanding of the use of seclusion and restraint and their effects on the people involved, their observations about poor practice and what contributes to it and ideas and recommendations regarding strategies to reduce or eliminate seclusion and restraint.

The focus group recordings were transcribed, then analysed using NVivo 10 qualitative data analysis software (QSR International, Melbourne, Vic., Australia). A general inductive approach was used to analyse the data.²⁰ Each transcript was closely read and reread multiple times in order to identify categories, which were coded for words, phrases and meanings in the text by one member of the research team (JJT) who was independent of both focus group facilitators. Categories were continually refined through the analysis, with coding consistency checks performed by another team member to ensure trustworthiness of the data (LMB). Further confirmation of themes took place through team discussions that involved both facilitators. The emerging themes were also discussed with the full research team. The project’s two Lived Experience Advisory Groups for consumers and supporters also discussed and commented on the preliminary findings. The analysis enabled consideration of the responses to the key questions in the focus groups as well as identification of emerging themes.

Participants discussed barriers either in a clear and explicit manner, or more implicitly through discussion about their observations and experience (Table 1).

Table 1.  Explicit and implicit barriers to reducing seclusion and restraint

Participants identified the physical environment as a barrier to the reduction of seclusion and restraint in two main areas: the emergency department and the in-patient setting. Participants commented on features such as poor lighting, uncomfortable waiting areas and rooms being bare and cold. There were many criticisms of the environments people in mental distress or crisis were finding themselves in, and the difficulty of being able to respond therapeutically in these environments.

Participants in the supporter and, to a lesser extent, the consumer focus groups discussed how drugs and alcohol contribute to the use of seclusion and restraint. For example, the process of admission of an intoxicated person in the emergency department may also be a barrier to reducing seclusion and restraint in cases of acute mental health issues.

Nine groups discussed the effect that seclusion and restraint have on consumers and carers. Through this discussion, several implicit barriers to the reduction of seclusion and restraint emerged. Even when deemed as necessary to manage risk, these practices were seen as breaching human rights, including basic freedoms. In addition, a lack of accountability and recognition from services for human rights breaches were concerns for participants, particularly because many of their supporters seemed powerless and may not be believed when they complain of abuse.

Participants discussed how trauma resulted from coercive practices, and how past traumas can be revisited during restraint or seclusion. Trauma experienced through restraint and seclusion was linked to the subsequent impact on a person’s recovery and ongoing relationship to services.

Paternalism was identified by participants as poor practice, encouraging the stigmatisation of consumers and contributing to a culture of fear and risk aversion, key factors in the overuse of coercive practices.

In both the consumer and supporter focus groups, strategies for the prevention of seclusion and restraint were discussed (Table 2). In the opinion of some participants, most often in the carer groups, seclusion and restraint may be necessary in some circumstances:

Table 2.  Strategies for reducing and/or eliminating seclusion and restraint

If a person is a severe and significant risk to either themselves or to another then I think that there is a duty on society to protect them, to protect them from committing offences against others or from doing those things to themselves. (Supporter)

However, others held strong views supporting elimination:

…it’s so appalling as somebody said…at the highest level of management, and the people with the power, what is going on. This should be absolutely banned. (Supporter)

There was considerable consensus that seclusion and restraint could be reduced and participants in both groups also discussed ways in which the elimination of seclusion and restraint could be realised.

Participants suggested that state and federal governments had an important role in leading change, as well as improving complaint systems, enabling public accountability and ensuring action is taken in relation to complaints. At the service level, participants proposed more opportunities to obtain advocacy, to complain and for services and staff to be accountable for their decisions and actions.

In seven of the 10 focus groups, peer support and advocacy were suggested as elimination or reduction strategies. There was strong consensus that peer support is vital to ensuring that understanding, empathy and recovery-oriented practice occur in the in-patient setting. Lived experience of seclusion and restraint gives peer support workers an important understanding of the traumatic effects of coercive interventions. Peer support workers can also assist in de-escalation, helping create a space of safety and understanding in a highly stressful environment.

Peer workers were also identified as having potential to influence practice and lead change more widely. In half the focus groups, it was suggested that more carer or family involvement could help reduce or eliminate seclusion and restraint. This was identified as particularly important for Indigenous people.

In over half the focus groups, strategies to improve the environment in the in-patient unit were encouraged. Changes such as non-fluorescent lighting, creating warmth by adding colour, pictures and quotes to walls and sensory modulation were suggestions that can be implemented within existing in-patient buildings. Unlocking the doors to the main ward and constructing a separate therapeutic environment connected to the emergency department were other suggestions by participants.

In nine of the 10 focus groups, respectful, recovery-oriented and sensitive care in crisis situations was recommended. Participants suggested that staff needed to be more prepared for responding to people who are distressed and there was confidence among participants that de-escalation strategies can work.

Improving staff culture was strongly linked to education and training, but also to steps such as ‘weeding out’ staff who appeared to lack skills and compassion and introducing more consumer feedback and involvement in services. Greater recognition of skills to calm and defuse situations was seen as a positive contribution to culture change.

Some participants suggested that improved support in the community would prevent involuntary admission and therefore result in less chance of seclusion and restraint being used.

Participants suggested that changing the language around seclusion and restraint may also change practice. Across consumer and supporter focus groups, participants commented that the violence of seclusion and restraint was disguised by the terminology used.

The responses suggest that there is considerable consensus between both the consumer and supporter focus group participants about proposed strategies to reduce seclusion and restraint.

The findings indicate the importance of mental health services being recovery oriented such that every effort is made to offer respectful and non-coercive support to a person who is in crisis or involuntarily detained in hospital. As the recovery focus has grown in mental health care, the means of increasing recovery orientation in acute in-patient settings are emerging in the literature.²¹ However, these findings suggest that introducing more recovery-oriented service delivery is challenging when coercive practice is supported by workplace culture.

The need to improve the environment in which services are offered is a key finding. This included radical changes such as the total removal of seclusion rooms, through to improving relatively minor aspects of the environment. Research by Bowers et al.²² has also supported the importance of improving the physical environment of in-patient units and also noted that having some acute wards without a seclusion space in regions of the UK reduced seclusion rates overall.

Providing opportunities for support and connection, including having greater access to peer workers, family and other informal support for people in crisis situations and on in-patient units, is an important overarching theme in these findings, potentially supported by the inclusion of supporters in the study. Participants suggested this type of support was most likely to ensure that the person and their experience were respected. This is supported by the fifth of the six core strategies that were developed by Huckshorn encouraging peer roles in programs to reduce seclusion and restraint.²³

Participants referred to the need for a change in the discourse surrounding seclusion and restraint, suggesting the current language appeared to support these practices as a legitimate use of power. Investigations of staff and consumer attitudes show language differs between these groups. Staff describe the impact of seclusion in more modest terms and use technical language that legitimises these practices.²⁴ Implicit barriers to the reduction of coercive practices also need to be addressed to ensure trauma, stigma and discrimination are acknowledged and addressed.²¹

These groups were deliberately small and based on participants opting in to participate, meaning the generalisability of the findings is limited. There were ethical and financial constraints on the project that limited the potential for more targeted purposive sampling of, for example, young people or people from different cultural and linguistic backgrounds. However, a broad range of participants did attend, the discussions were lengthy and fruitful and a safe environment for the discussion of such potentially sensitive issues was achieved. This was particularly supported by having a cofacilitator who had lived experience of the interventions under discussion.

Participants clearly identified that the current situation needs to change and a major contribution of the perspectives proffered is to inform a sense of urgency for action. It appears that many participant perspectives are in agreement with the United Nations Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, who has called for an absolute ban on all forced and non-consensual medical interventions.²⁵ He has stated that ‘both prolonged seclusion and restraint may constitute torture and ill-treatment’ and that there can be no therapeutic justification for the use of them in psychiatric institutions.²⁵ Consumers’ and their supporters’ perspectives regarding strategies for reducing or eliminating seclusion and restraint share similar concerns to those reported in previous research.^21–24 These findings reinforce the emphasis on the need for accountability and the value of providing peer support and enabling the involvement of supporters. These strategies have the potential to assist with the policy direction in Australia of working towards the elimination of seclusion and restraint and are in need of further exploration. The strategies consumers and their supporters identified in the present study provide an important contribution to efforts to reduce coercive practices, improve recovery-oriented services and indicate the value of hearing the voices of those directly affected by the use of seclusion and restraint.

The authors report no competing interests.