Practitioner points

• There is scarce literature supporting the development of personal growth with hallucinatory experiences and it is empirically limited. The present research provides greater information into the phenomenon to inform service provision.

• The importance of acceptance and maintaining hope for change was highlighted.

• Services and the use of coping strategies were both identified as facilitative and hindering of personal growth.

• This research provides a necessary alternative to the often negative literature; challenging societal perceptions and helping promote much needed hope in clinicians, the public and individuals experiencing hallucinations.

‘Hallucinations’ refers to the experience of perceptual events which are not shared by others; this may include a continuum of experience [1]. Hallucinations can be both traumatic, and caused by trauma [2]. Despite research suggesting hallucinations are a common human experience [3,4], negative perceptions fed by limited public understanding remain [1]. More concerning perhaps, is the stigma held by clinicians [5-7]. If clinicians hold negatively biased attitudes, without hope, they will struggle to support clients’ recovery journey [7,8]. Clinician stigma may be perpetuated by the predominantly deficit-driven literature, focused on reducing hallucinatory experiences, functional deficiencies and costs associated with the experience. In order to better understand the subjective perception of hallucinations we need to explore all aspects of the experience, both positive and negative, rather than assuming the two are mutually exclusive [9].

‘Personal growth’ refers to positive changes in self-awareness, acceptance and social integration that may result from shifting lifetasks and social roles [10]. Personal growth has been alluded to in the context of auditory or visual hallucinations [11,12], yet only a few studies have attempted to explore the individual experience or consider how it may be identified and promoted.

Dunkley, et al. [13] presented two cases of personal growth following first episode psychosis. Participants described a greater appreciation of life (e.g. reassessing values and feeling there is more to life), deeper understanding of others (e.g. the experience bringing people closer together and developing empathy) and an enhanced perception of personal strength (e.g. overcoming previously unimaginable challenges, understanding personal assets and developing self-reliance). Mapplebeck, et al. [14] concluded that personal growth in psychosis is a fluid process of the adapting self, defined by four common themes; finding meaning and purpose; support and understanding; inner strength and determination; and self-acceptance and awareness. These studies provide preliminary evidence for the existence of personal growth with hallucinations, and present some common concepts of what defines it. The current literature is very limited in its theoretical approach and study population, and is aimed solely at the identification of personal growth but does not consider influencing factors beyond this.

This study aimed to explore how people experiencing hallucinations understand personal growth and what influences their experiences.

Design

The present qualitative study used semi-structured interviews to explore individuals’ experiences of personal growth with auditory and visual hallucinations. Interpretative Phenomenological Analysis (IPA; [15]) informed the design and analysis of the data, which was comprised of participants’, transcribed interview responses.

Participants

Seven people aged between 28 and 53 (M=43.57, SD=8.94) participated in this study. Five were male, and all were white British (Table 1). Purposive sampling was used to ensure a suitably homogenous study population for in-depth analysis. Participants were all recruited from a mental health trust in the north of England and met certain criteria: a) currently involved in mental health services solely or largely due to experiencing auditory or verbal hallucinations; b) presently at a clinician-established level of stability (indicated by no suicide attempts and/or involvement with a Crisis Team for 6 months); c) their hallucinatory experiences were not considered to be solely attributable to substance use; d) had capacity and the ability to provide informed consent; e) fluent English speaking; and f) over 18 years of age. Whilst some had previously, none of the participants were actively participating in psychotherapy.

Table 1: Participant demographics.

Procedure

Ethical approval was granted by the NRES Committee Yorkshire and Humber. Care co-ordinators provided potential participants with the study information sheet. Interviews were conducted by the lead author and guided by a semi-structured schedule founded on current quantitative and qualitative investigations into hallucinatory experiences and personal growth. The schedule explored both positives and challenges to having hallucinatory experiences, focussing on participant’s perception of any changes in interpersonal relationships and personal attributes, expectations for the future, and how challenges were encountered, tolerated and overcome, including the facilitators and hindrances to challenges and changes. Interviews took place between September 2015 and March 2016, all were audiotaped and lasted between 17 and 90 minutes (mean=55 minutes).

Analysis

Transcribed interviews were analysed using the IPA approach outlined by Smith et al. [15]. Individual transcripts were examined closely, making descriptive, linguistic and conceptual comments, and identifying emergent themes. Transcripts were collated and compared, noting aspects of commonality and difference amongst the identified themes. Emergent themes were sorted into super- and sub-ordinate themes and original transcripts were re-examined for quotation data regarding these themes. The structure and relationships between these themes was explored in a process of ongoing reflection and interaction with the data, facilitating the thematic organisation that was best representative of the data. Secondary authors reviewed transcripts and conducted analyses on the data that was then compared with the lead researcher’s to increase reliability of the findings. Regular supervision and the use of a reflective journal allowed for conversations that aimed to reduce the influence of the lead researchers’ natural biases, values and position.

Researcher’s position

Due to the interpretative nature of the present study, the lead researcher’s socio-cultural position undoubtedly shaped the development, implementation and analysis of the research. It is acknowledged that their values were most likely to be similar to those of young, educated, white British adults. She was aware of a personal tendency towards optimism, founded in her upbringing, which established a belief that ‘good’ may come from experiences of distress and that we, as people, are shaped by the varied experiences we encounter. Not only does this allow for the concept of personal growth following distress, but it assumes this growth is desirable. Without such values, the construction and findings of the present research would have likely differed.

The following themes were generated from the participant’s accounts in response to the research questions. Table 2 presents a summary of the overall theme and subthemes.

Table 2: Superordinate theme and subthemes.

A difficult journey taken day by day

Most participants described recovery as a timely process with “little stages” (Dave) and found it difficult to talk specifically about the changes they’ve encountered. Robin noted “it’s hard to describe how the changes happen,” describing it as too much of a gradual journey to notice changes. Although most participants reflected on long periods of negligible change, some noticed how their lives had progressed. Participants contemplated small changes with a sense of each day getting easier, whilst simultaneously keeping a focus on where the journey would take them:

I can see eventually me getting better… it’s starting to become a part of my life if you know what I mean, like an everyday thing (Sophie).

Nearly all of the participants discussed the importance of time and emphasised how they experienced recovery as a long journey. Participants seemed certain that the journey was not over and that whilst positive change felt attainable, there was hesitation and caution when discussing the future, with participants mindful that the direction of travel could easily change:

It’s been a weird journey, but y’know, been interesting (laughter)… seems to have taken a long time but y’know it’s, finally y’know I, now I think I’ve finally just, let’s see where they journey takes you and, y’know… if it goes up, good (Paul).

Participants often struggled with identifying positives and seemed to find it difficult to think about the future with any certainty. They expressed wanting to make “realistic” (Robin) expectations, but found it difficult to predict their next steps in life:

I don’t even know what tomorrow’s going to bring yet let alone 5 years down the line (Paul).

Their journey with hallucinations had thus far been unpredictable, and so this, mixed with a reluctance to ‘tempt fate’, appears to make the explicit request for interviewees to consider their future uncomfortable.

Participants found it hard to talk positively about something that had caused them much distress over the years. Participants described the experience of hallucinations as a continuous battle which appeared to play a key role in the process towards change and strengthening their identity. Some, like Debbie, found positives in fighting the experiences:

It’s more or less arguing with it. Saying, the voice and that, sometimes, it isn’t all the time, it’ll say to me ‘you will do this’ and ‘you will go back on this’ and stuff, and I keep saying to myself ‘nah, I’m not going to let it happen (Debbie).

Some seemed to find that when they ended the battle and accepted the experiences they felt more able to move forward and develop selfcompassion:

Now the battle that’s going on inside is over, so you can just like stop feeling crap which had happened over a period of time… just give up the fight, and look after yourself (Steve).

An internal battle could be witnessed during the interview, where responses were often hesitant and conditional, with participants detailing the negatives of hallucinatory experiences immediately prior or subsequent to identifying a positive factor of change:

I think it can be a good thing sometimes, but I think sometimes you can go over that line (Debbie).

Yet, participants expressed a fluid sense of recovery, both over the many years of recovery journeys and also within the interviews. Looking back on past changes to predict future growth was a theme shared by all as reflected on their own lives in an attempt to learn from any observations. The process of reflecting on their journey in the interview itself allowed participants to develop new meanings.

Because I’m talking about it, it make me realise even a bit more…it’s helping in being here today... because I’m actually going away now feeling more err slightly a lot well a lot more happier (Dave).

Stigma

All the participants described a struggle in accepting that “there’s something not right” (Debbie). Initially, many of participants preferred to hide their hallucinations from others as a way of coping. Concealing these experiences seemed to involve a change of identity and participants put on different personas in an attempt to avoid judgement from others. Suppressing or resisting hallucinations seemed to be a way of distancing oneself from a more stigmatised identity and actively seeking out a separate identity:

I’m trying to separate the person, I like the person that I am when I’m not hearing voices (Sophie).

Expectations and experiences of stigma limited acceptance and restricted the process of change. One of the hardest parts in the journey was “taking that first step” (Paul) and engaging with services. Some of the participants explained the prospect of receiving a diagnosis (and the subsequent judgements) was the source of their trepidation:

I don’t want to accept it’s schizophrenia because it will always be branded, I’ll always be branded with that name, and if you tell anyone you’ve got schizophrenia they automatically think that you’re a mental case and that you’re going to kill them… if you tell people you have schizophrenia or you hear voices, they’ll stay away from you or, and so I don’t want to be I don’t want that name branded on my on me… a lot of people judge you (Sophie).

Acceptance

Acceptance was a key theme in all of the participant’s accounts. The process of accommodating the experience of hallucinations into their identity seemed pivotal in laying the foundations for personal growth. The meaning of “getting better” (Sophie) evolved over time. Interviewees initially appeared to aim for a reduction in their hallucinatory experiences, but through a process of acceptance, began to find new meaning in their experiences.

I remember being at my best friend’s house and she said ‘well why don’t you just talk to them’ y’know the voices, rather than sitting around or arguing, so I did and I spoke to them so I went ‘hello’ and they go ‘oh hello you finally talking to us’ and I was like what?! But then from then I, they’re more helpful now than disturbing… it’s like I’ve got a lot of friends I talk to every day (Steve).

Participants who had integrated their hallucinatory experiences into part of their identity described how they would feel “hollow” (Dave) if their hallucinations were no longer part of them, expressing reluctance to revert to a previous identity.

A lot of people say what if I could change things but I’m not sure I would, y’know, if, I’ve just learnt to accept that it’s part of me now (Paul).

Despite the position that hallucinations were often experienced as negative, some interviewees focussed on turning this adversity into positivity, and identified the importance of maintaining a positive focus:

I’ve heard it said you be grateful for what you’ve got, so, but, and so I would, yeah it has got its negatives but I do try to steer away from it (Dave).

This process was interpreted as being “more hopeful generally” (Robin) which required actively seeking positivity, steering away from the negatives, and noticing encouraging change, fostering the individual’s hopefulness for further personal developments.

For many, experiencing personal growth coincided with a sense of belonging. An ongoing process of feeling accepted by others led to feeling more connected and finding a place in their community. Others simply emphasised the importance of being comfortable with their identity, regardless of societal expectations. The desire to meet or disregard societal expectations seemed a fluid and ongoing process:

Don’t give up on wanting to become yourself, rather than your society or whatever, forget all of them forget everything else, you’ve got to be comfortable with yourself (Steve).

Finding the right support

All participants expressed gratitude for support they have received, often from other people in a similar situation. Whilst some participants identified practical support as helpful (e.g. guidance on coping strategies), they mainly emphasised the value of feeling emotionally supported. Participants indicated that it was often the ‘simple things’ that seemed to make the biggest difference; such as feeling that somebody was there for them, opening up about their experiences and feeling that others accepted them.

I think it’s just sometimes the simple thing of somebody listening (Paul).

The concept of services themselves hindering the process of change was also shared by participants. They recalled instances where procedures in services meant that support was unstable, referring to services being disjointed and feeling like they’re in “slow motion” (Paul) at times when they needed them most. Participants felt there had been a “lack of information” (Dave) regarding the help available, and found that clinician-held stigma had exacerbated distress, as Steve explains when he perceived a staff member responding negatively to his disclosure of hallucinations:

I was going to see my CPN which I thought was a counsellor at the time, and the reaction from him was like ‘WOAH’ and that’s what took it over the edge… instant paranoia (Steve).

Participants equally identified that services had facilitated their positive journey of change, but it required finding the ‘right’ support. They repeatedly identified the value of gaining more stability through medication, learning coping strategies, and engaging in the social aspects of services such as therapeutic groups.

Now that I’m getting, I’ve got the right support in place and things like that, it’s starting to get better (Paul).

Participants highlighted that particularly helpful forms of support from services were learning different ways of thinking and coping (e.g. rationalising, mindfulness, relaxation, and safe distraction and distress tolerance techniques). Some identified engaging in 1: 1 sessions with a psychologist as helpful, naming cognitive behavioural intervention techniques, but most identified engaging with their local Hearing Voices network and other social groups as a primary source of support. They identified how their experiences of hallucinations can be isolating, losing friends, separating them from society and making them feel abnormal; but reflected that as they themselves have developed so have their relationships:

I met some nice people through it, that suffer the same thing when you suddenly realise you’re not on your own (Dave).

Dave describes this process of finding a community and feeling much less alone. Participants talked about feeling like they are a part of something now, expressing that their hallucinations had acted as a medium through which their role in society had enriched.

Participants talked about there being a shift in the coping strategies they have adopted. They reported not having coping strategies to start with but developed them through “trial and error” (Robin), often first discovering easily accessible substances. Interviewees spoke about realising that their past avoidant coping (e.g. alcohol, drugs, wearing a ‘mask’) was hindering their personal development, like Dave:

I’d be mixing alcohol with prescription drugs to again to knock mesen out, which seemed to me yeah the solution but it wasn’t it was only making things worse (Dave).

Dave talks here about the goal of coping being unconsciousness, ultimately avoiding the experience, but then learning how this may be obstructing positive change. Participants described instead adopting more positive therapeutic strategies, such as those identified above, to support them in attaining personal happiness and a different sense of self.

Personal growth

All participants emphasised how their hallucinatory experiences shaped who they are today. Living with hallucinations influenced how most participants related to other people. Participants gained a deeper, more holistic understanding of humanity and were able to look beyond mental health difficulties.

It’s changed the way I see others, think about other attitudes and I the way I’ve seen myself (Dave).

It seemed as though the experience of distressing hallucinations allowed participants to become more sensitive to people’s suffering and fostering a greater sense of compassion:

I show more empathy maybe, more than I used to. More understanding with people with difficulties and stuff like that (Robin).

Participants described a range of changes in their outlook on life, such as growing to find peace within themselves and the world:

I think I’d have been a lot more destructive rather than constructive if I maybe wasn’t hearing or seeing things… I think it’s changed my outlook on, on certain things, y’know, of just sometimes learning to sit and watch the world go by, rather than, trying to beat the world (Paul).

Many reflected on the personal qualities that enabled them to carry on in the face of adversity. Reflecting on these challenges allowed Debbie to appreciate a new, stronger and more resilient identity:

I haven’t let it beat me… it’s made me more tougher… the voice has given me more strength, and it’s it’s sort of like, made me into the person I am, stronger (Debbie).

This notion of resilience was spoken with caution and appeared tentative. Some participants, like Debbie above, repeated what they had said, almost as though reaffirming the sentiment made it more believable. Most participants shared the experience of facing adversity and struggling, whilst continuing to persevere and discover inner strengths.

This study found new evidence supporting personal growth for people who experience hallucinations. Personal growth was recognised as a process of changes, a journey that often took time and on occasion felt like an internal battle but generated rewarding developments in the self, which, through acceptance, a more resilient and understanding person emerged. This process reflects the archetypal development of hallucinatory experiences, as described by Romme and Escher [16], whereby participants move from a ‘startling’ place of rejecting the experience, to a position of ‘stabilisation’ and acceptance. This understanding has important implications for the support offered to individuals experiencing hallucinations, suggesting personal growth may be facilitated by earlier intervention promoting acceptance of the experiences as opposed to ‘symptom’ eradication.

Themes were similar to those described in previous research; such as a greater sense of understanding one’s strengths [13] and personal growth being a fluid process, involving an adapting self and the importance of acceptance [14]. Growth was in line with Sheldon et al.’s [10] global definition; individuals referred to a positive shift in their sense of self, relationships with others, and the world around them. Participants could identify this personal growth as happening in the moment. Their accounts were not simply retrospective, rather participants explored historical and contemporary experiences as they acknowledged their past changes, compared this to the present self, and considered their challenges for future change with hopefulness and new meaning.

To the best of our knowledge, this study is novel in its exploration and identification of both facilitators and hindrances of personal growth with hallucinations. The results highlighted a complex relationship between factors for personal growth; the two core factors identified (services and coping strategies) were recognised as both facilitative and hindering. This acknowledges the struggle of adapting and finding the ‘right’ help, with mental health services and individuals themselves not feeling equipped to manage the complexities associated with hallucinations.

The role of stigma and hopelessness was identified as a hindrance to personal growth. In order to facilitate personal growth, there must also be a challenge to societal-level prejudgment of hallucinations as debilitating and fearsome. Conveying the continuum of experiences and potential positives frees individuals from the preconception they should be fought and hidden.

Acceptance of hallucinations facilitated personal growth. Barriers to acceptance such as internalized stigma prevented participants from talking about their experiences. Talking about their hallucinations helped participants to make sense of their experiences and facilitated a process of developing their identity in order to integrate all parts of them. It was only through this process that participants were able to appreciate and grow from their experiences. This is complemented by participants’ reports of enjoying, and finding value in, the positively constructed interview. Clinicians could support service users to overcome some of these barriers by offering normalizing education about hallucinations [17] and encouraging peer support (i.e. Hearing Voices network).

The present research is limited by the small study population; the sample is purposely homogenous to provide rich data whereby the findings were not intended to be generalisable to the wider population of people experiencing hallucinations. Of particular note, all of the participants were white British and as such the experiences depicted here are likely to differ to individuals in other ethnic cultures. Additionally, the recruitment methods for participants were open to self-selection bias and therefore the present findings must be interpreted cautiously considering why the participants voluntarily contributed and who the recruitment may have missed.

Future research may wish to consider how services can promote an individual’s earlier acceptance of the hallucinatory experiences, and encourage an integrative identity, which had been linked with this development of personal growth. Further understanding clinician attitudes in the context of hallucinations may help to develop services to enable personal growth.