Sample characteristics
We interviewed 20 EIS mental health practitioners. The sample was demographically varied, comprising 60% women, 45% from non-White British ethnic groups, and participants from all adult age brackets, from 18-25 through to over 55 years old. Professional backgrounds were diverse, as intended, including psychiatrists, clinical psychologists, mental health nurses, social workers, occupational therapists, non-qualified staff and a CBT therapist. The demographic and professional characteristics of the participants are summarised in Table 1.
Eighteen participants reported working in adult EISs providing care to service users with first episode psychosis over 18 years old. One EIS team had a child and adolescent mental health team aspect embedded to it, and two participants were working with service users aged 14 to 21. Half of the participants were working as care coordinators (i.e. key workers planning and coordinating support for a caseload of service users).
Qualitative Findings
Overview
Qualitative findings are presented below according to three main areas of discussion in interviews: 1) How loneliness manifests itself among EIS clients; 2) Reasons why EIS clients are lonely and its effects on them; and 3) Potential ways of alleviating loneliness among EIS clients.
1) Manifestations of loneliness in EIS clients: Social isolation and disconnection
Practitioners believed that most EIS clients experience loneliness. They reported that loneliness among clients is mostly expressed indirectly, and only a few openly speak about it.
“They [EIS clients] say, well, I've got nobody, I'm alone…They won't come out and say, I'm lonely, but they come and say, I have nobody, nobody cares about me. Even if you ask about a neighbour, nobody there…don't know anybody.” (Mental Health Nurse, Team A)
Practitioners felt that EIS clients expressed their loneliness in two main ways. Firstly, most participants perceived socially isolated clients as lonely. They reported that many clients were socially withdrawn, spending most of their time at home without sources of connection:
“And then you can see in their eyes that they’re lonely, when you ask them, how do you spend your day? Then they will say, mostly staying at home, indoors, maybe watching TV. Not interacting with anybody, living an isolated life, or just playing games.” (Specialist Psychiatrist, Team D)
Some of the practitioners reported having clients whose isolation was such that their main social contacts were meetings with mental health professionals:
“…I think there's a big part of the population we look after that perhaps see just us. And I don’t think they may have other meaningful contact with other professionals or anyone else…” (Consultant Psychiatrist, Team B)
Feeling different and disconnected emerged as another way that practitioners felt their clients expressed loneliness. They described how clients feel that they do not fit in and often avoid sharing important experiences with other people. This results in feelings of disconnectedness that hinder the development, and continuation of meaningful relationships.
“I mean, the patient had friends, but there was definitely a disconnect in terms of emotional support… that she kind of felt like having to kind of live a secret life in front of her friends…Kind of this is me, I'm fine, but really, she's experiencing these really horrible voices saying certain things.” (Social Worker, Team C)
Some respondents also highlighted the importance of exploring whether clients seen as lonely by practitioners in fact experience loneliness.
“And you might look at someone and it’s, oh my God, they spend five, six days a week on their own…They must be lonely. And I’ve had situations where people have said to me, I’m not lonely at all, really…So, I guess, number one, it needs to be identified as the service user’s perspective, that they feel lonely.” (CBT Therapist, Team D)
2) Connections between loneliness and psychosis: symptoms, stigma and negative sense of self
Participants saw their clients as falling into two groups: those for whom loneliness emerged following the first episode of psychosis, and those for whom it was already a difficulty. In the first group, loneliness was seen as a by-product of psychosis. In the second group, practitioners linked premorbid loneliness to the lack of strong social networks and history of trauma. They believed that loneliness breeds loneliness with this second group being more vulnerable to loneliness after the onset of psychosis.
“…is about how well connected they are before their illness…that’s where if they didn’t have strong friendships to start with and then they got ill and their illness kind of took them into hospital for a period of time and took them away from their normal life so to speak that’s when they then come back to that and back into community. That’s when they really talk about kind of loneliness.” (Mental Health Nurse, Team D)
In both client groups, three features were identified as having mutually reinforcing relationships with loneliness: symptoms (psychotic and affective symptoms), stigma, and a negative sense of self.
Symptoms
Participants reported observing a bidirectional interplay between loneliness and mental health symptoms. Feelings of depression and anxiety, positive and negative symptoms of psychosis, and suicidal ideation were related to loneliness. Some participants suggested that service users with more affective symptoms tended to be lonelier, and lonely service users presented more feelings of sadness and low mood.
“...[loneliness] is going to affect their mood and the way that they[service users] manage things, so they might feel lower in mood as an effect of being lonely, they might feel less able to deal with things and manage things, because they feel unsupported…” (Occupational Therapist, Team C)
Several participants also thought that the experience of psychotic symptoms could initiate or maintain loneliness. It was even suggested that prolonged feelings of loneliness could trigger a first episode or lead to a relapse:
“…a good example is a patient who recovered and who has been discharged, but he felt lonely for years, and then you discharge the patient without taking into consideration that that loneliness was also a trigger for his illness…so, eventually if they continue to feel lonely…then obviously there is a risk factor…which could be a contributing factor for a possible future relapse.” (Specialist Psychiatrist, Team A)
Paranoia in particular was seen as having a reciprocal relationship with loneliness and social anxiety: feeling paranoid increased loneliness and social anxiety, while loneliness also fed into paranoia. Although there was a consensus among participants regarding the negative impact of symptoms in loneliness and vice versa, one participant described auditory hallucinations at times counteracting some clients’ feelings of loneliness:
“…Because clients can develop a relationship with their voices which can sometimes fill the gap of loneliness. Sometimes people say, actually, I like my voices because it's like having friends around me, and they can have the connection with the voices themselves.” (Clinical Psychologist, Team C)
Stigma and negative sense of self
Most of the participants thought that stigma associated with mental illness caused and/or maintained loneliness for their clients. They described how clients often became gradually estranged from friends and family after their first psychotic episode. This stigma was attributed to the media, and to the lack of public awareness around mental health problems.
“I have one service user who feels she can't talk to her husband because whenever she talks to her husband, he throws the fact that she has a mental problem or a disability back into her face, so she feels reluctant to share with him any information. And obviously you're in a relationship, and so being unable to share that information does make that person feel quite lonely.” (Non-Qualified staff, Team A)
Participants also talked about the reciprocal relationship between negative view of self and loneliness. The internalisation of mental illness stigma into people’s identity fosters low self-esteem and feelings of worthlessness that can in turn result in social withdrawal and feelings of loneliness:
“He [service user] is probably been quite lonely for quite some time…and he talks to himself, and people in his community sort of berate him for that…yes, he feels quite judged by his community because he’s not achieved…So, he wouldn’t go out until late at night, so his people wouldn’t see him.” (Mental Health Nurse, Team D)
The two clinical psychologists described social comparisons as a pathway to loneliness, leading to avoidance and a further loss of confidence reinforcing the negative evaluation of one’s self.
“He was withdrawing because he was comparing himself with how he used to be, and with others. And so, therefore it was easier to just opt out and avoid…so then you’d get into the cycle of withdrawing, losing your confidence, and then becoming lonely.” (Clinical Psychologist, Team A)
3) Service responses to loneliness
Existing Interventions
Participants reported that their EIS teams did not offer targeted loneliness interventions. However, they described how existing interventions or initiatives with a different primary objective could be beneficial for reducing loneliness. These included social groups, psychological interventions, vocational support, and religious groups provided by the EISs and/or the local boroughs.
The most cited intervention for addressing loneliness was social groups provided by the EIS or the local boroughs. These included a wide range of activities such as going to the cinema, going for coffee, playing board games, or physical exercise. Reported patient benefits varied, and seemed to be related to the severity of symptoms, the level of motivation, and engagement with services.
“...the social group hasn't been helpful for the lady that's at home all the time because she's unable to go out. But certainly, for the other gentleman that's very lonely and doesn't have any friends or family, he's found the groups extremely helpful and he tends to, when he's well enough he tends to come to the groups and contributes and socializes that way.” (Social Worker, Team A)
Despite the EIS model’s aspiration to support integration in mainstream provision as far as possible, stigma was seen as a barrier in engaging people with groups not related to mental health services:
“...If we refer into the cooking groups run by the local borough, they want a care coordinator to attend the session with them, because they have some misguided ideas about mentally ill people using kitchen equipment…so that’s quite…disheartening, from our point of view.” (Mental Health Nurse, Team D)
Psychological interventions were also seen as having secondary benefits for loneliness. Psychological interventions included therapeutic groups, family therapy and individual therapy, with the majority of them being offered by the EIS. The therapeutic groups consisted mostly of CBT-based psychoeducation groups, but also music and art groups. There was consensus among respondents that, despite limited availability, individual talking therapy could be beneficial in reducing feelings of loneliness by targeting negative self-schemata:
“…I personally think that more active psychology could help, psychology in any form…it has the capacity…to change the way they [the service users] perceive themselves, and their social contacts…” (Non-Qualified staff, Team B)
Help with employment, including voluntary work and skills-based resources, as well as in obtaining employment, was seen as another indirect way of addressing loneliness. Religious communities were also cited by a few as helpful in reconnecting people with religious affiliations back to their communities:
“…they’re often quite tight knit church communities, who took very seriously the idea of visiting people in hospital and looking after people. And a lot people especially from African demographic spend a lot of free time in church….” (Mental Health Nurse, Team B)
What else could be done?
Accounting for patient’s stage of recovery was seen as critical for the effectiveness of any potential loneliness intervention. Respondents emphasised that an individualised approach would be needed, with each client’s unique social circumstances, stage of recovery, interests, values and current symptoms shaping their needs. As a result, a single generic intervention for loneliness might fail to help them. Views on what provision could usefully be developed varied, but with many participants emphasising the need to consult clients:
“And the solution [to loneliness] needs to be driven by people, and I guess it's very useful to ask about it…from the simple things like why don’t we have a badminton group...And maybe if we listen to people we'll set up cafés next, or we'll do other things that perhaps would be a lot more useful in addressing loneliness.” (Consultant Psychiatrist, team B)
Some respondents viewed loneliness as a broader societal problem and not specifically related to mental illness. They believed that it should be tackled at multiple levels including the mental health services, service users, families, local communities and society as whole.
“It’s everybody’s responsibility to reduce loneliness…there’s something around certain events that happen in London that I think people feel a sense of community…So, there’s something at that level, but also within a family, within a group of friends. So, this is the café, this is the pub, the landlords…” (Clinical Psychologist, Team A)
Participants talked about increasing opportunities for social interaction and linking people back to their communities as ways to alleviate loneliness. The usefulness of fighting stigma alongside signposting people to community groups without a mental health focus were reported as potentially beneficial for loneliness:
“Something with a social aspect would be helpful for loneliness…but something that’s not just mental health specific. Because I just think that marginalizes people…like, I had a conversation with one of my clients about joining a book club. So, stuff like that.” (Mental Health Nurse, Team D)
On the service level, participants suggested that all EIS staff should be mindful that loneliness is a common feature in psychosis and create space for people to able to talk about it. A holistic approach for tackling loneliness was seen as key with practitioners describing the importance of seeing service users as complete social beings. They talked about spending more time with clients, having meetings without a mental health focus and exploring their interests. A concern expressed by some respondents was that through forging a good working alliance, they may become the primary social contact for some isolated service users:
“... Like, I see him [the service user] once every other week. And he said to the psychologist, when asked, what do you do with your time? He said that he hangs out with me. And I just thought that was really sad, because... You know, when I’m paid to, you know....” (Occupational Therapist, Team D)
The use of online apps and forums was seen as a promising tool for reducing loneliness by a few participants. Lack of romantic relationships was also perceived as contributing to loneliness, and a few practitioners thought there might be scope for EISs to take a more active role in helping clients to meet this need.