Background
Contemporary understandings of recovery extend the clinical focus on symptomatic remission to incorporate personal understanding about the processes of recovery, in which individuals are experts of their own lived experiences [
1,
2]. Consistent with national [
3‐
5]and international [
6] mental health policy, recovery is defined as a personal process of living with or without the mental health concerns [
7], which includes elements of connectedness, hope, identity, meaning and empowerment [
8]. Mental health systems, internationally, have increasingly adopted a recovery-oriented approach to servicing [
9‐
11].
Recovery-oriented approaches have seen the introduction of new interventions, which endorse the central importance of experiential knowledge, such as the sharing of personal recovery narratives. These are defined as a first person lived-experience accounts of mental health concerns which include both aspects of struggle/adversity and survival/strength [
12,
13]. Personal recovery narratives are increasingly used in clinical interventions, public health campaigns, and as part of the peer support worker role in mental health systems. Illustrative examples of three well-established interventions which use narratives are now described.
Narrative Enhancement Cognitive Therapy (NECT) is a clinical intervention which addresses self-stigma for people with mental health problems [
14]. Self-stigma involves strong group identification and the internalisation of negative stereotypes by an individual [
15] and has been identified to have negative effects on an individual’s self-esteem, self-efficacy, and treatment participation. NECT aims to address self-stigma through three mechanisms: psychoeducation to redress negative stereotypes; cognitive restructuring through the provision of adaptive coping strategies; and narrative enhancement through the facilitation of insight to assist individuals to make meaning of their experiences [
14,
16]. Therefore, changes to an individual’s self-narrative are theorised to reduce self-stigma. Randomised controlled trial evaluations of NECT have shown a positive impact on self-stigma, and associated outcomes such as hope, self-esteem and quality of life [
17,
18].
Public health anti-stigma campaigns, such as Time to Change [
19] in England, work under the premise that having social contact with individuals who have lived experience of mental health concerns who share these experiences will reduce public stigma through improving knowledge, attitudes and behaviour [
20]. Disclosure of one’s mental health status is a core component of social contact, which can occur in face to face settings or through accessing online recorded narratives [
21,
22]. In a study accessing the changes in public stigma in England, survey data was collected from approximately 1700 individuals each year, spanning ten-years (2003–2013). Findings indicated that there were increases in positive attitudes in terms of prejudice and a reduction in exclusion towards people with mental health concerns [
19]. Disclosure of mental health concerns through social contact was found to reduce public stigma, and has been associated with lower levels of self-stigma and higher rates of help-seeking behaviours and treatment utilisation [
23].
Despite the increasing evidence for the effectiveness of interventions which utilise narratives of individuals with lived experience of mental health concerns, the evidence base for the mechanisms by which narratives impact on recipients is limited. The best evidence base comes from our third example, which concerns peer support workers. Peer support worker roles use the experiential knowledge of individuals who are in recovery from mental health concerns to provide support to others [
24]. The use of experiential knowledge includes when a peer support worker shares their own experienced difficulties to the person they are supporting. A change model of peer support interventions identified three core mechanisms: building trusting relationships based on lived experience; role-modelling recovery; and assist in engaging with clinicians, services, and the community [
25]. The effectiveness of peer support interventions has been identified in a Cochrane review to be equivalent to services provided by mental health professionals [
26].
Evidence about the impact of recorded recovery narratives has only recently emerged. We have undertaken a series of studies to understand the impact of recorded recovery narratives on recipients, of which the current paper is the third study. First, we conducted a systematic review and narrative synthesis to develop a conceptual framework to characterise the impact of live or recorded recovery narratives on recipients [
27]. Five publications were included, and the synthesis identified six broad potential impacts of narratives: connectedness; understanding recovery; reduction in stigma; validation of personal experiences; emotional response; and behavioural responses. Each impact was identified to be helpful or unhelpful, and could be moderated by the characteristics of the recipient, context and narrative. However, there were large methodological differences between the included studies. All studies were diagnosis specific, with an emphasis on understanding the effects of engaging in narratives featuring eating disorder behaviours. A sub-group analysis identified harmful disorder specific impacts through the emulation of eating disorder behaviour which contributed to the maintenance of the disorder. Additionally, the range of modalities of recovery narratives used within studies included in the systematic review was narrow. These included; a narrative read out by the researcher, a written memoir, video narratives, and spoken stories as part of a telling my story course [
21]. Each of these modalities were evaluated separately and the effect of receiving multiple narrative modalities is unknown. The synthesis was therefore limited in its generalisability.
Secondly, we conducted a qualitative interview study involving 77 participants with mental health concerns [
28]. The aim was to develop a preliminary trans-diagnostic change model characterising the range of possible impacts of recovery narratives and how they occur. Participants were recruited from four under-represented groups within mental health services: those with experience of psychosis who have not used mental health services for the last 5 years; black and minority ethnic groups; those who have experienced difficulties accessing mental health services; and peer workers. Iterative thematic analysis was used to develop the preliminary change model. Impact primarily occurs when the narrative recipient develops a connection to a narrator and/or their narrative, and is mediated by the recipient recognising shared experiences, noticing narrator achievements, noticing narrator difficulties, learning how recovery happens, or experiencing an emotional release. Helpful outcomes of receiving recovery narratives comprised hope, connectedness, validation, empowerment, appreciation, reference shift and stigma reduction. Impact was moderated by the perceived authenticity of the narrative, and whether the recipient was experiencing a crisis.
The study had several limitations. The preliminary framework captured impact over a longer duration, as participants recalled narratives which they encountered over the past few years or decades. Whilst this provides an indication of the long-term impact, it cannot provide understanding of how individuals may be immediately impacted by recovery narratives. Understanding of impact over a longer duration may introduce the risk of recall bias, where the recall of specific details of narrative impact may be influenced by other experiences. Connection was identified as the core mechanism of change in the study, but specific mechanisms and processes underpinning connection were not characterised. Finally, the narratives recalled by participants comprised both live and recorded recovery narratives, so the results may not be specific to the impact of recorded recovery narratives.
A knowledge gap exists in relation to understanding the immediate impact of recorded recovery narratives across different modalities. The aim of this study is to refine preliminary change models presented through previous studies [
27,
28] in order to produce a testable causal chain model characterising how receiving a recorded mental health recovery narrative impacts on connection. The objectives are to understand the mechanisms by which connection with narrative and narrator characteristics occurs (Objective 1) and to characterise the processes by which these mechanisms of connection lead to outcomes (Objective 2).
Method
This interview study was conducted as part of the Narrative Experiences Online (NEON) Programme (
researchintorecovery.com/neon), which is investigating whether engagement with recorded mental health recovery narratives can influence an individual’s recovery journey. Ethical Committee approval was obtained (London-West London REC and GTAC 18/LO/0991) and all participants gave written informed consent. Findings will inform a future clinical trial (ISRCTN11152837).
Participants
Eligible participants were people with current mental health concerns, using statutory mental health services, aged over 18 years-old, able to provide informed consent, and fluent in English. Individuals who were experiencing crisis or who were otherwise unable to take part in the research were excluded. Participants were recruited from statutory mental health services within one Healthcare Trust in the East Midlands of England.
The study was promoted as an investigation of narrative impact, through social media, advertisements within services (e.g. posters and newsletters), and by clinicians and managers from Improving Access to Psychological Therapy Services, community forensic services, locality mental health teams, and recovery colleges. Both clinician referrals and self-referrals to the study were accepted. Potential participants received the study’s participant information sheet from their clinician or directly from the researchers. Interested participants then contacted researchers or gave their clinician permission to pass on their contact details. Researchers assessed eligibility and informed consent was obtained prior to the interview. Interviews took place on a university or clinical health service premise.
Procedures
The NEON Collection is a managed set of recorded mental health recovery narratives for which organisations or individuals have provided permission for use [
29]. A total of approximately 680 narratives was part of the NEON collection at the time of this study, drawn from four external collections and represented narratives from six countries. Recovery narratives were defined as a first person account of lived experience that includes elements of both adversity/struggle and of strength/success/survival, and refers to events or actions over a period of time. The inclusion criteria for recovery narratives in the wider NEON Collection were: 1) fitting the definition of a recovery narrative, 2) available in a digital media file (audio, text, video, HTML, image), 3) informed consent was provided for use, and 4) the narrative is presented in English. Exclusion criteria were; fictional, describing criminal activity, containing defamatory material, media of low quality, and narrative that contain detailed description of harmful behaviour (e.g. specific techniques associated with self-harm, eating disorders, suicide).
A sub-set of 30 narratives were assembled from the NEON Collection by two researchers. Narratives were purposively selected to maximise variation in three dimensions: modality, narrator diversity and length [
30]. Multimedia use in educational settings has been shown to increase depth of learning in students [
31], suggesting that this may promote engagement and cater to different learning styles within individuals. Narratives with a substantial range of modality are available in the public domain and the use of multimedia may also promote inclusiveness of individuals who experience disabilities or may have difficulty comprehending a specific mode of media, for example due to dyslexia. To accommodate, a mixture of text, audio and video-based narrative modalities were chosen. The selected narratives were diverse in narrator age, gender and ethnicity, given preliminary evidence that sociodemographic characteristics can influence connection [
27]. Finally, to vary cognitive demands on participants, the chosen narratives were different in length. Text narratives ranged from half a page to three pages, video narratives ranged from one to 5 min, and audio narratives ranged from two to 3 min (see Additional file
1 for characteristics of all included narratives). Based on a pilot of the study protocol, it was estimated that on average participants would take no longer than 10 min to read, watch or listen to a narrative. Overall, 15 text (comprising poems and prose text), 10 video and five audio-based narratives were included in the study. Narratives included in the study were introduced to participants as mental health recovery narratives which contained aspects of survival and struggle, occurring over a period of time.
All participants were asked about their stage of recovery in alignment with stages identified by Llewellyn-Beardsley and colleagues [
12] and completed the Herth Hope Index (HHI). The HHI is a 12-item abbreviated measure adapted from the Herth Hope Scale [
32]. Developed for use in clinical settings, each item is self-rated on a four-point scale from ‘strongly disagree’ (low hope) to ‘strongly agree’, and the total score ranges from 12 (low hope) to 48. The HHI has good psychometric properties with high internal consistency (Cronbach alpha = 0.97), reliability (0.91) and content validity [
32]. Participants were asked whether they had any disabilities, which would preclude them from engaging with specific types of narratives, for example arising from visual, hearing or learning disabilities. If individuals expressed preferences, then a random selection of ten stories drawn from the stories consistent with those preferences was provided if possible. If no preferences were given, then a random selection of ten stories from all 30 stories was provided. As far as consistent with preferences, a mix of text, audio and video-based narratives were selected. Following the completion of the demographic questionnaire, participants were iteratively shown up to ten stories, but fewer if requested. After engaging with each narrative, participants provided qualitative feedback on three questions: How connected to the story did you feel? How connected to the narrator did you feel? and How hopeful did the story make you feel? Participants were prompted discuss reasons for why they felt connected or hopeful as a result of engaging in the narrative. Further prompts from the researcher were guided by participant responses. Where participants experienced distress as a result of engaging with a recovery narrative, the researcher paused the interview to support the participant and ask whether they wanted to continue with the interview. Participants were reimbursed £20 and travel expenses. All interviews were audio recorded and transcribed verbatim.
Analysis
The analysis took an interpretative approach. To address objective 1 (mechanisms of connection) an inductive and deductive approach to qualitative analysis was used [
33], to build on the preliminary evidence on the mechanisms of connection derived from previous studies. To address objective 2 (impact of connection on outcomes) an inductive approach was used to investigate the processes by which connection mechanisms lead to outcome, due to the absence of any empirical evidence on this component of the causal chain.
A preliminary coding framework, used as part of the deductive approach in objective 1, was developed through the synthesis of existing research on the impact of receiving recovery narratives [
27,
28]. This is shown as Additional file
2. The preliminary coding framework was then refined through a thematic analysis of the interview data, guided by a six-step process outlined by Braun and Clarke [
34]. First, data from the semi-structured interviews were transcribed verbatim and anonymised. Secondly, two analysts (FN, AC) familiarised themselves with the data by reading the transcripts and preliminary coding frameworks. Third, the two analysts independently coded the first four transcripts to refine the coding framework, and additional codes that did not fit the preliminary coding framework were generated to capture new themes. Fourth, discussions between analysts were held to develop the working coding framework. Discussions focused on the refinement of codes and definitions, where all four transcripts were discussed in full. Fifth, the coding framework was discussed with the wider analyst team consisting of nine analysts, to further refine the framework and identify disagreements, which were resolved via consensus. Sixth, the revised coding framework was applied to the remaining transcripts by the two initial analysts. The causal chain model was developed from the synthesised themes identified in the coding framework. Specific attention was made to understand how connection occurs (mechanisms) and how connection leads to outcomes (processes). To evaluate the fit of the causal chain model, two participant transcripts were reviewed in light of the developed model by one researcher. The wider analyst team had expertise in psychology, nursing, health services research, computer science, mad studies, and qualitative research. Several analysts also had lived experience of mental health concerns, enhancing the role of lived experience in the analysis and interpretation of findings [
35]. A sub-group analysis was conducted on data collected from narratives, which caused participants to feel distressed. The purpose of the sub-group analysis was to identify the narrative characteristics, which contribute to distress, in order to increase awareness of the characteristics which may lead to unhelpful outcomes. A thematic analysis was conducted through extracting participant responses to the specific narrative which elicited distress. Participants were considered distressed if they requested a pause in the interview due to an emotional or physical response to the narrative. All analysis was conducted using NVivo version 12.
Discussion
This study examined the immediate effects of receiving mental health recovery narratives, to describe the mechanisms of connection and processes from connection to outcome. A testable causal chain model was developed through a thematic analysis of semi-structured interviews with 40 current mental health service users. Impact of narratives is mediated by recipient and narrative characteristics. Connection occurs firstly through the reflection of one’s own experiences, which leads to three mechanisms (comparison, learning, and empathy). These mechanisms of connection lead to outcomes through three processes 1) identifying the presence of change in the narrative, 2) interpreting the valence of change, and 3) the recipient internalising change. Short-term distress can arise when there is a strong sense of connection, and through the identification of parallels between the recipient, narrative or narrator.
Relationship to prior research
The use of recovery narratives within mental health services has been argued to fulfil a neoliberal agenda [
36]. The literature has called for the inclusion of diverse recovery narratives which represent differing trajectories and genres, including those that do not depict an upwards trajectory [
12,
36]. In this study, the definition of a recovery narrative was deliberately broad to promote a diverse range of narratives [
12]. However, narratives which were described as incomplete or only representing experiences at a single time point, led to questions over the conceptualisation of what is a recovery narrative. Whilst narratives perceived to convey an upward trajectory were reported to have a positive impact on outcomes. This may be suggestive of participant expectations for the type of recovery narrative they perceive to be helpful and may indicate differences between participants’ and the adopted definition in the current study. These expectations may have been influenced by participants’ prior engagement, such that more than half the sample had received a narrative in the past year and that the majority of participants indicated that they were at an earlier stage of recovery. The findings of this study only elicit the types of narratives that may be helpful and further research is required to understand whether narrative or recipient characteristics (such as age or gender) influences the helpfulness of a narrative. It should be highlighted however, these impacts do not imply that narrators should share their experiences using a prescribed format. Rather it indicates that a wide range of narratives is required in order to increase the possibility of connection occurring.
The effect of a narrative’s modality on outcomes have minimally been explored where prior research has predominately examined the impact of recovery narratives using one modality (for example the presentation of text-based narratives only) [
37,
38]. Our findings indicate that the modality in which a narrative is presented may moderate the effects on connection. Visual and auditory cues provided within video and audio-based narratives were reported to provide greater context and assisted with a participant’s construction of a holistic view of the narrator. However, not all participants considered video or audio-based narratives as their preferred modality. Only a minority of participants indicated a preference for modality, yet this indicates that the provision of choice is an important aspect for interventions utilising recorded recovery narratives. The inclusion of a mix of modalities, including video, text, audio, image-based, and narrative forms, including narratives in poetry form, use imagery or metaphorical literary devices may increase the possibility that an individual will connect with at least one narrative.
Comparisons made between the narrative and participants’ stage of recovery, extends current understanding in the literature [
27,
28]. At present the literature on recorded recovery narratives have indicated that stage of recovery, may moderate the impact of receiving a narrative. For example engaging with eating disorder narratives which provide specific examples of harmful behaviours might encourage individuals at an earlier stage of recovery to emulate these behaviours [
39]. However, comparisons made in this study by participants focused on progress made in recovery, rather than behavioural expressions. In peer support worker interventions, role modelling was identified to promote feelings of optimism [
25], yet the present study identified that upward comparison could lead to a mixed effect, such that a narrator’s achievements may be deemed to be too hopeful or unrealistic. Therefore, consideration of a potential gap in stage of recovery between what is portrayed within the narrative and where a recipient stands may be important when selecting recorded recovery narratives for use by individuals. Whilst it is difficult to predict reactions to specific narratives, understanding a recipient’s stage of recovery and life experiences may provide an indication of the relative acceptability of narratives.
Findings also indicate that comparisons made between the narrative and the participant did not necessarily have to be based on the participant’s own lived experiences, where comparison also occurs when narratives reminded recipients of the experience of others. These narratives left recipients with a sense of familiarity, and for some, generated a sense of empathy. This is an important finding and may indicate that recorded recovery narratives may have helpful effects on individuals who engage with people with mental health concerns, such as informal carers. Family members and other informal carers can play a significant role in the recovery of people with mental health concerns [
40‐
42], and can also experience high levels of burden, distress, and stigma [
43,
44]. The provision of recorded recovery narratives may be a low-cost approach to improving outcomes for family members and carers. Future research could test the applicability of the current model and the subsequent effects on outcomes in family members and carers of people with mental health concerns.
Recorded mental health recovery narratives are known to elicit emotional responses in recipients [
28,
37]. However, minimal descriptions of empathy arising from receiving recorded recovery narratives are available. Recent studies have suggested that empathy is based on mirroring systems, whereby observing emotions from others may stimulate emotions in the observer [
45]. Sharing one’s lived experience has been described to be a highly emotive experience [
46], which may explain why, despite differences in experience, some participants experienced a sense of empathy towards the narrator. Although narratives included in this study portrayed both aspects of success and survival, witnessing negative experiences could cause distress in recipients. This may indicate that recipients focus their attention on aspects of narratives that resonate most strongly with them or reflect their current experiences. This may be an important consideration for interventions which feature recovery narratives, such that whilst narratives need to be relevant to a recipient, the tone of the narrative may need to match the recipient’s ability to process the narrative. Therefore, prior to the recommendation of specific narratives consideration of a participant’s current life experiences and potential triggers may be required.
Engaging in mental health recovery narratives has been found to improve a recipient’s understanding of recovery [
28,
47] and providing participants with narratives depicting different experiences to their own could lead to learning. However, a negative impact on connection, due a lack of familiarity, can also occur. A balance between comparison and learning may need to occur when selecting narratives for recipients. It is unclear whether individuals value one mechanism of connection over another, or whether one mechanism is more important at differing stages of recovery, this might be an avenue for further research. The provision of randomly selected stories may facilitate the process of understanding what individual recipients may connect with. Yet, consideration over the readiness of recipients to receive material that may contrast to their personal beliefs or experiences might be valuable for clinicians who intend to use recorded recovery narratives in clinical practice.
The evaluative processes by which connection leads to impact have not previously been documented and further refines the causal change model. These have broader implications for interventions which feature narratives and for individuals who share their lived experiences with others. The refined causal change model can inform the selection of narratives for inclusion and provides insights into outcome variables which may be of interest in future intervention trials. Individuals who are preparing their lived experience to share with others could consider the narrative content and the structure to aid a recipient’s identification and interpretation of change. These recommendations are made with the intention to increase impact a narrative may have on others, rather than prescribing a specific manner for which narratives should comprise.
Strengths and limitations
The strengths of this study include the study design, multiple use and range of narratives, and multiple analysts. First, the study design allowed for a more controlled approach to understanding impact, compared to receiving narratives within a live setting. Second, the use of multiple narratives (up to 10) spanning differing modalities, which may improve the acceptability and usability of the narratives by participants. This also allows for acknowledgement of the differing approaches narrators may wish to use to express their narrative and counters criticisms of the dialogic nature of narratives [
12]. Third, given that the narrative content was identified to be important for the facilitation of connection, the inclusion of a range of narratives provides more opportunities for individuals to connect with a narrative.
The study, however, was not without limitations. First, the cultural background of participants may influence how narratives are interpreted. Participants in this study were predominately from a white background and have high levels of education, therefore responses may not fully encapsulate the perspectives of individuals from other population groups. Second, all narratives included in the study were relatively short; longer recorded recovery narratives, such as biographies, may have a different effect on recipients and could be a future research direction. Third, the study design did not allow for the follow up of participants, so it is unknown whether a participant’s level of connection was maintained, or whether participants had a delayed reaction to the narrative. Fourth, stage of recovery was also identified to influence the manner in which connection occurred. However, the present study used self-reported views of participants rather than objective measures of personal recovery. Future research could incorporate psychometrically validated measures to further understand the relationship between an individual’s recovery status and the impact of recovery narratives. Fifth, given the qualitative nature of the present study, more than one interpretation of the findings is possible. However, one strength of the study is the utilisation of multiple analysts with a range of expertise to reduce potential bias during the analysis process. Sixth, whilst the data reflected that the narrative modality had a moderating effect on connection, the data was inconclusive as to whether modality affects all participants in a specific manner. This may be due to the design of the study, where all individuals received a random set of narratives, as such cross-comparison of responses between narratives was not possible. Future work may involve giving the same set of narratives to a large number of diverse recipients, to identify individual narrative characteristics which have an overall positive impact.
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