We recruited 15 service users, 18 clinicians, and 14 family members/friends. Overall 75 interviews were held. SB-ADM documents were developed in ‘triads’, with the service user as founding member, and then including their chosen friend/family member a clinician from their treating team. Although the service users remained consistent throughout the interview process, the particular friend/family member or clinician could change depending on their availability, service user preference, or movement between teams.
Table 1. describes participant characteristics and figure 1. illustrates the schedule of interviews.
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Six core themes were identified with a seventh overarching theme. These are illustrated in figure 2., a conceptual map outlining the journey that someone might experience in creating a SB-ADM document. Quotes illustrating these themes are in table 2.
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These themes represent the majority views in the sample. However, two service users had markedly different views illustrated in table 3.
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Overarching theme: Self-binding
Re-defining self-binding
All but one service user used their documents to self-bind (see table 3). Participants were unfamiliar with the term ‘self-binding’ and found this language unhelpful although once explained the concept felt intuitive. Interestingly, the scope of self-binding requested was wider than is traditionally anticipated. The classic example of self-binding is used to request involuntary admission and enforcing (particular) medical treatments. However, service users were also interested in self-binding relating to care, for example requesting that a certain family member be contacted, even if the service user was likely to refuse that they be told they were unwell.
Weighing up coercive treatment
Participants from all groups openly weighed up the place of coercive treatment in managing their illness. All but one service user accepted the need for coercion as part of their care (see table 3). Many expressed frustration about delayed admissions during previous crises and the harm this caused. They hoped that making this kind of document might facilitate an admission, when needed, which was both faster and on their terms i.e. more autonomous. They hoped that simply drafting the document and talking with people they trust about these very difficult circumstances may help prevent future crises escalating. There was a sense that well timed, personalised use of coercion could be experienced in hindsight as care. Service user participants described being abused and assaulted by staff and patients yet were willing to bind themselves with an element of self-sacrifice. They were able to imagine their future unwell selves objecting to the decision they were about to make but were still willing to go ahead.
Facilitating relational autonomy
For some service users who wished to self-bind to admission a more complex view of the meaning of autonomy emerged. Rather than aspiring to achieve a sense of classical individualistic autonomy they seemed to see the document as helping to support relational autonomy (29). These service users saw their illness as something which was managed together, within the family system. They trusted loved ones to give information about thresholds for admission and support required in hospital. They wished to self-bind to admission to prevent harm to themselves, but also to valued relationships. They detailed in their document the support they would like loved ones to provide should they become unwell, requesting a reciprocal response to their act to protect the relationship.
Core theme 1: Feeling oppressed
Subtheme: Experiencing racism
Service user and family member/friend participants from black backgrounds reported that black service users are more vulnerable to experiencing coercion and abuse during the process of Mental Health Act assessment, inpatient care, and police involvement. Key drivers were felt to be lack of understanding around cultural difference, for example around communication style and unfounded assumptions about risk of violence.
Interestingly, clinicians’ views on the presence and impact of racism within services were polarised. Some believed it unlikely, due to the diverse workforce, whereas others reported their own personal experience of racism.
Amongst participants who discussed the topic there was agreement from all three groups about both the particular importance and increased barriers of ADM for people from black backgrounds .
Subtheme: Experiencing mental health stigma
Service users described stigma and shame related to experiencing mental illness which impacted work and family life. It was felt that there was less stigma attached to physical health treatment.
Subtheme: Experiencing role based power differentials
Most service users felt oppressed by mental health staff during admissions. All family members discussed difficulties around being uninvolved in key decisions about the care of their loved one and accessing medical staff involved in care. Some clinicians commented on tensions between different professional groups and models of care. Others expressed a sense of helplessness at working within a poorly resourced and seemingly uncontrollable health system.
Despite acknowledging these issues, participants were undaunted by the idea of meeting to discuss their ADM document. However, service users felt an initial session with an independent supporter was important for clarifying thoughts and increasing confidence to assert their views to clinicians. Following document completion most service users reported experiencing relief and empowerment.
Core theme 2: Being mis/unheard
All service user and family and friend participants reported feeling not listened to or misinterpreted. ADM was felt to offer a remedy for this by facilitating listening in the process of making the document and during crises. This would have the advantage of reducing the burden of needing to re-explain clinical details to multiple clinicians in a crisis, personalising care and increasing clinical efficiency.
Core theme 3: Addressing trauma
All service user and family participants reported an experience of trauma when they or their loved one was unwell. Service user participants all had similar attitudes to managing the distress that may arise during the process of creating an ADM document. They acknowledged that, although it could feel distressing, it remained worth addressing to reduce the risk of future traumatic events, increase empowerment and as a therapeutic process. Service users reported that the support session had an important role in managing the emotional aspects of making the document.
Most professionals also acknowledged the potential for distress in making the document due to previous traumatic experiences related to mental illness and/or treatment. They commonly compared and contrasted service users they knew who had a variety of attitudes towards it. In their minds there was a group who would not be ready to face their past experiences contrasted with a group who had insight and who could find it beneficial in addressing and regaining a sense of control.
Core theme 4: Losing capacity
Most service user participants had not heard of the concept of mental capacity. However, once explained they found it intuitive and most stated that they lost DMC-T during episodes of mania. However, participants described complexities in identifying this shift. Several service users acknowledged that they ‘mask’ their symptoms or can appear ‘plausible’ for short periods of time when assessed by unfamiliar professionals.
Participants had a range of views about completing a section of the form designed to identify when this shift occurred. Some raised concerns that it may feel distressing to complete, as there is something ‘shameful’ about the experience of losing capacity, or that it might be difficult because of memory loss during episodes. Some clinicians expressed concerns that it might be too difficult for some service users. However, contrary to these expectations, all participants completed the section.
Core theme 5: Risking hope
All service user participants had already decided to make an ADM document, as this was part of the study eligibility criteria. However, for most this was not a straightforward decision. Common experiences were that care/admission was not available early enough and lived expertise is not taken seriously meaning situations escalate and more coercion is required. While they expressed ambivalence about the risk of placing hope in a mental health system which had let them down in the past, remarkably all were willing to take this risk. Their motivations for this included wanting to avert or reduce the severity of another episode, improve communication, avoid admission, or ensure earlier admission on their terms and improve the experience of inpatient treatment.
Family members/friends and clinicians shared a similar attitude with service users; they were in touch with the realities of operating within a health system with stretched resources. They expressed hope that the document could make a difference but fears that it would not be accessed or taken seriously.
Core theme 6: Building alliance
Participants reflected on strengths and tensions in relationships with others involved in making each document. Several relationships between clinicians and service users were characterised by moving from past experiences of turbulent relationships to coming to some sense of resolution and collaborative working. These service users were at the point of discharge from their community team and all parties felt that making the ADM document was a helpful way to end a therapeutic relationship. While other service users were still in turbulent relationships with clinicians, only one service user declined meeting with their health team to make their document.
Hopes from most family/friend participants included that making the documents might provide opportunities to have helpful conversations about previous crises within the family, reduce carer burden about making difficult decisions on the service users behalf and create a shared understanding of the illness. Family members and friends who had been involved in making the ADM document reported feeling a sense of relief and empowerment that they now felt more confident about how to help their loved one in a crisis.
‘Radical’ cases
There were two service user participants whose views on ADM deviated from the majority. The first wished to make a document refusing all treatment. The second wished to make ‘radical requests’ around being admitted to hospital without treatment to enjoy the experience of mania. Table 3 illustrates key differences of opinion between these two radical versus typical cases.