Social Processes of Young Adults’ Recovery and Identity Formation during Life-Disruptive Mental Distress—A Meta-Ethnography
Abstract
:1. Introduction
2. Methods
2.1. Selecting and Locating Relevant Studies
2.2. Criteria of Inclusion and Exclusion
2.3. Quality Appraisal
2.4. Reading the Studies
2.5. Determining How Studies Are Related
2.6. Translating Studies into One Another
3. Synthesis of Included Studies
3.1. Expectations of Progression in Youth Contrast with Stagnation during Psychosis
“Consistent with their developmental stage, participants in this study also identified that issues related to separation-individuation, decreasing dependency on parents, and working towards personal autonomy were important” [40], p. 140.
“(…) participants described an experience of stagnation during their illness, as symptoms forced a period of absence from ‘normal life’ while peers continued to progress with expected milestones. Participants seemed to indicate a sense of being left behind with less things in common with their friends than before their illness (…) The period of illness seemed to ‘pause’ progress through life stages, including education and training opportunities, romantic relationships, and having children” [49], p. 9.
3.2. Feeling Isolated, Lost and Left Behind
“The participants identified two factors that contributed to their social isolation: the loss of the friends they had before the onset of psychosis and difficulty in engaging in new friendships. According to the participants, the second factor—difficulty in engaging in new friendships—related to social and cognitive skills” [42], p. 428.
“(…) participants experienced the ward as like being ‘in prison’, ‘on lock-down’, and ‘cut off from the world’. This conveys a sense of confinement, restriction and segregation. Viewing hospital as a prison evokes images of being trapped and having limited agency (...) It is reasonable to speculate that some aspects of the restrictive nature of inpatient environments might be experienced as particularly negative for young adults precisely because they are at a stage of life where they are only just beginning to achieve independence from institutional spaces and structures (e.g., schools) in their day-to-day lives” [46], pp. 237–238.
“He felt nobody understood, and that all he could do was bottle up problems at this time. For him the sense of being alone and misunderstood was bottled up and became a significant factor in the development of his psychosis. Possibly the cultural notion that men, especially young men need not talk about feelings or weaknesses was felt strongly by this young man (…). This could well be both a gender and age-related struggle that is magnified by the young man’s fears about how he will be received in light of his psychosis” [41], p. 259 and 261.
“Nearly all participants stated that talking about their psychosis experiences was personally and relationally risky, and while some tried to initiate conversations, others avoided talking to family about their mental health altogether. For some, this included keeping their mental health status a secret or minimizing it significantly; for others, it was avoiding revisiting ‘bad’ experiences, even when they felt it might help them. Only one participant described a supportive discussion about psychosis with a family member. Most felt their mental health experiences were burdensome, and so they silenced themselves, perhaps at least partially, as an act of care for others” [50], p. 657.
3.3. Young Adults’ Recovery Involves Belonging with Other Young People
“At this point in their recovery, the participants expressed that they were now thinking about getting on with their lives like any other young person, specifically negotiating separation-individuation issues with parents (...). The essence of the experience of these young people’s social relationships was their struggle to integrate their psychotic experiences with their experience of being young adults” [40], p. 138 and 141.
“Five participants highlighted a desire to ‘get life back on track’, in terms of management of symptoms, housing, employment and/or education. For some participants this was perceived as integral to having the confidence to meet new friends and progress socially (…). When describing recovery, participants described a role for friends that was unique and could not be filled by family members. In particular, participants highlighted pressure from family members and unsolicited advice regarding recovery (…). In terms of aiding recovery, participants made sense of their friends’ involvement as providing support and distraction. It seems that doing everyday activities (such as playing football) helped participants to re-build an identity outside of the illness” [49], p. 12 and 15.
“(…) the service-users noticed that a set of parent-child scripts were activated. In some respects, such scripts might be helpful (e.g., as here, invoking nurture and care), and in others we could speculate that they may not (e.g., there is the potential for the ‘parent’ role to undermine independence, or overlook individuality). Simon described feeling ‘looked after’, and missed the staff once he left (he went back to visit the staff and say thank you). Although Mark also felt looked after, he did not feel actively cared for by staff and felt his individuality was overlooked” [46], p. 237.
“Whilst we must acknowledge that psychiatric hospitalization can be a threat to anyone’s identity, we must also emphasise the centrality of this concern in the accounts of these young people. Emerging adulthood is a time of crucial psychosocial development, individuation, memory formation, and identity construction (Harrop and Trower, 2003). Both psychosis itself and intense exposure to its potential consequences (via hospitalisation in an environment peopled by older and more experienced adults in distress), present substantive threats to this process, as we can see in the accounts above” [46], p. 238.
3.4. Forming Identity Positions of Growth and Disability during Psychosis
“…finding more meaning in existence through their individual experiences, and so their sense of handling the world around them and themselves matures. They come through the emotional challenges of their life stage, which appear magnified by their experience of psychosis and reflect on changes in their confidence and self-understanding. In this theme there are indications that the passage of time has allowed young men to reflect on the meaning their psychotic experiences has had in their lives, particularly in their relationships to themselves and others” [41], p. 260.
“Participant Blue had a felt sense that viewing himself as disabled limited his capacity to reach toward his personal purpose and potential. Participants who did not access their personal potential had a felt sense that psychosis had delayed or permanently interrupted their personal growth process (…) Non-affirming relationships did not offer participants the time, space, and support they needed to develop validating beliefs about psychosis. Participants experienced this lack of support as offering them a narrow degree of freedom to make meaningful sense of psychosis. Participant K7 sensed this lack of support as encouragement to accept a belief that psychosis was a debilitating life experience (…) A restricted sense of identity incorporates psychosis as a negative influence on participants’ identity construction, giving them a sense they could not access their personal potential. Participant B12 experienced psychosis as turning him into a broken person” [47], p. 76, 77 and 81.
3.5. Lines-of-Argument Synthesis: Navigating Relational Complexities in the Process of Recovery
4. Discussion
4.1. Connectedness and Empowerment Enables a Positive Sense of Self
4.2. Getting on with Life with Friends
4.3. Multiple Routes to Adulthood and Recovery
4.4. Strengths, Limitation and Reflections on Research Positions
5. Conclusions
Implications for Practice
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Inclusion Criteria | Exclusion Criteria |
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Year and Authors | Field of Research | Study Context | Sample | Recruitment Details | Data Collection Method | Methodological Approach | Aim | Findings |
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2005 Mac-Donald et al. [40] | Psychology | Australia Recovery Group Program in an early psychosis treatment | 6 participants 19–25 years 5 males, 1 female | Experiences with social relationships following psychosis onset. Interviewed 1–2 years following first admission. | Multiple semi-structured in-depth interviews | Phenomenology | To explore young people’s experiences of social relationships following first episode of psychosis in order to facilitate their social relations. | “Participants in this phenomenological study were juggling a desire to be involved in normal adolescent activities with wanting to be with people who are accepting and understanding. They described not keeping in touch with their old friends associated with usual changes in friendships across the life cycle, along with a real or perceived concern about potential rejection, and a wish to leave behind harmful lifestyles and activities. The essence of the experience of these young people’s social relationships was their struggle to integrate their psychotic experiences with their experience of being young adults.” (p. 144) |
2005 Hirschfeld et al. [41] | Psychology | UK Users of psychiatry recruited through keyworkers | 6 participants 19–29 years All male | Interviewed 3–5 years following first episode of psychosis. | Semi-structured in-depth interviews | Constructivist Grounded Theory | To explore the subjective experiences of young men during psychosis and the meaning the experiences have for them. | “The analysis has produced four themes common to all the accounts: experience of psychosis, immediate expression of psychotic experiences, personal and interpersonal changes, and personal explanations.” (p. 262) |
2009 Roy et al. [42] | Occupational Therapy | Canada The youth psychosis clinic of the Hôpital Sacré-Coeur in Montreal, Quebec | 19 participants 18–30 years 16 male, 3 female | Interviewed on arrival at youth psychosis clinic prior to inclusion in rehabilitation component of the program. Interviewed within 5 years following first episode of psychosis. | Semi-structured interviews | Undefined | To explore the competence and handicap-creating situations experienced and perceived by young adults living with recently onset schizophrenia in their daily roles and activities. | “The participants experienced more handicap-creating situations than competence situations. The themes included a diminished quality of relationship with parents, social isolation and difficulties in work and academic performance, as well as poor access to education. The perception of the participants on each of these themes is elaborated.” (p. 424) |
2010 Romano et al. [43] | Nursing | Canada First episode psychosis program | 10 participants 19–30 years 5 male, 5 female | Interviewed twice 1–3 years following initial treatment for first episode of psychosis. | In-depth semi-structured interviews | Constructivist Grounded Theory | To explore how individuals describe their process of recovery following first episode of schizophrenia and how identified individuals, e.g., family members, describe their perceptions of and roles in the participant’s recovery process. | “The results provide a substantive theory of the process of recovery from FES that is comprised of the following phases: ‘Who they were prior to the illness’, ‘Lives interrupted: Encountering the illness’, ‘Engaging in services and supports’, ‘Re-engaging in life’, ‘Envisioning the future’; and the core category, ‘Re-shaping an enduring sense of self’, that occurred throughout all phases. A prominent feature of this model is that participants’ enduring sense of self were reshaped rather than reconstructed throughout their recovery.” (p. 243) |
2011 Lam et al. [44] | Psychiatry | China/ Hong Kong The Early Assessment Service for Young People with Psychosis (EASY) in Hong Kong | 6 participants 23–29 years 3 male, 3 female | Interviewed from 1.4 to 6 years following first episode of psychosis. | Focus group | Non-specified qualitative analytical method | To explore subjective recovery experiences following first-episode psychosis and the meaning attached to experiences of illness and treatment. | “(…) four major themes: the meaning of psychosis and psychotic experience; the meaning of recovery; stigma; and having an optimistic view of recovery (…) Participants’ view of recovery was broader than that often held by psychiatrists.” (p. 1) |
2012 Windell et al. [45] | Psychology | Canada Follow-up assessment at a specialized early interventionservice | 30 participants 25.9 years (mean) 23 male, 7 female | Interviewed 3–5 years following initiation of treatment for psychosis. | Semi-structured interviews | Phenomenology | To explore personal definitions of recovery among individuals recently treated in a specialized early-intervention service. | “A majority of individuals considered themselves to be recovered. Responses indicated that recovery is a multidimensional experience and is often a personalized and achievable goal at this early stage in treatment. Individuals described recovery as improvement in one or more of three domains: illness recovery, psychological and personal recovery, and social and functional recovery. There was variation in the extent to which individuals perceived that recovery involved alleviation of symptoms and elimination of underlying vulnerability to illness.” (p. 548) |
2014 Fenton et al. [46] | Psychology | UK Early Intervention Services | 6 participants Mean 24.5 years 5 male, 1 female | Interviewed 1–1.5 years following first episode of psychosis. | Semi-structured interviews | Phenomenology | To explore experiences of hospitalization during first episode of psychosis. | “Findings describe fear and confusion at admission, conflicting experiences of the inpatient unit as both safe and containing, and unsafe and chaotic, and the difficult process of maintaining identity in light of the admission.” (p. 234) |
2015 Hayden-Lewis [47] | Psychology | USA Early Assessment and Support Alliance identifying young people with psychosis | 7 participants 19–24 years 6 male, 1 female (1 person changed sexual orientation during the research project) | No information on length of participants’ experiences with psychosis. | Intensive semi-structured interviews | Constructivist Grounded Theory | To explore how young adults who experience psychosis and schizophrenia develop their sense of identity. | “Data analysis generated the central category of identity construction, called “making sense of psychosis”. Analysis also illuminated the properties of making sense of psychosis, which were called developing beliefs about psychosis and degrees of freedom. These properties and their dimensions influenced and were influenced by the contexts exploring relationships and relating to personal potential. The general consequence of participants’ process and experience of making sense of psychosis was called “becoming who I really am”, which best described participants incorporating psychosis into their sense of identity. The potential for a reciprocal action process existing between making sense of psychosis and becoming who I really am was also explored.” (Preface) |
2019 Cogan et al. [48] | Psychology | UK Early Intervention Service in the Scottish National Health Service | 10 participants 16–18 years 5 male, 5 female | Interviewed following 1–5 years of contact with the mental health system. | Semi-structured interviews | Thematic Analysis | To explore adolescents’ personal understandings and experiences of recovery during early onset of psychosis and how subjective experiences of living with psychosis have impacted their self-identification. | “Qualitative analysis of adolescents’ accounts revealed how recovery from psychosis involves working with individual explanatory frameworks concerning uncertain identities and status ambiguity, a decrease in reference points and unfavorable social comparisons (emphasizing loss, grief and self-criticism).” (p. 169) |
2021 Huckle et al. [49] | Psychology | UK Early intervention service for psychosis in London | 14 participants Mean: 25 years7 male, 7 female | Purposive sampling regardless of engagement with services or level of social functioning. Interviewed 0.5–2.8 years after first referral to psychiatric services. | Semi-structured interviews | Thematic Analysis | To explore experiences of friendship of young people during first episode of psychosis, focusing especially on any perceived changes in their friendships or approach to peer relationships as a result of psychosis. | “Identified themes included the loss of social contacts because young people developing psychosis withdrew and because friends withdrew as illness developed. Regarding recovery, a unique role was identified for friends, and participants were often making conscious efforts to rebuild social networks. Mental health services were viewed as having a limited direct role in this.” (p. 1) |
2021 Boden-Stuart et al. [50] | Psychology | UK Early psychosis services | 10 participants 18–23 years 5 male, 5 female | Purposive sampling. Interviewed following attendance at early-intervention service for 1–3 years. | Relational mapping interview | Multimodal hermeneutic phenomenological approach | To explore how young people experiencing early psychosis ‘map’ and describe their experiences and understandings of their family relationships, and how they have related to their psychosis and recovery. | “Findings explore the participants’ accounts of how they love, protect, and care for their families; how they wrestle with family ties as they mature; and their feelings about talking about their mental health with loved ones, which was typically very difficult.” (p. 646) |
Metaphor | Examples of Extracts that Inspired Metaphor Construction |
---|---|
Expectations of progression towards independence in youth | “They described their personal experiences of adjusting to age-related milestones like going onto further and higher education, finding work, increasing their sense of independence and personal responsibility, developing sexual relationships and changing relationships with friends and parents.” [41], p. 206 “(…) the developmental tasks facing young adults: continuing studies; finding a life partner; having children.” [44], p. 4 “Participants reported tensions between moving away and staying connected with family, wrestling to balance their needs for closeness and separateness and the expectations of others with regard to maturity and recovery.” [50], p. 656 |
Psychosis as stagnation and challenge to ‘normal’ youth development | “As expected the onset of a psychotic illness has a major impact on a young person’s life and heightens the challenges of fulfilling the developmental roles, and of engaging in activities and relationships with other people.” [40], p. 139 “The majority experienced a reduced capacity to participate in activities (e.g., school, work), engage with friends, and became increasingly dependent on family.” [43], p. 247 “Six participants described an experience of stagnation during their illness, as symptoms forced a period of absence from ‘normal life’ while peers continued to progress with expected milestones. Participants seemed to indicate a sense of being left behind with less things in common with their friends than before their illness.” [49], p. 9 |
Suffering from social isolation following psychosis | “Participants gave first-hand descriptions of feelings of loneliness, isolation and demoralization prior to joining the [group] program.” [40], p. 130 “Losses were experienced by the adolescents in multiple domains of their lives (peer and romantic relationships or educational achievements) following their episode of psychosis.” [48], p. 174 “The reported findings demonstrated experiences of loss of social contacts as a result of first episode psychosis, resulting from either participants or friends withdrawing, and highlighted the intense effort and vulnerability involved in building new relationships for this client group.” [49], p. 13 |
Young people’s recovery as a social/interactive and active process | “Participants identified the importance of having the support of others as they re-engaged in life particularly highlighting the fact that their recovery did not occur in isolation.” [43], p. 248 “Perception of “being able to do something about it” included identifying potential (personalized) avenues for agency and control of the experience and the experience of being able to enact these strategies. This component of recovery often involved specific lifestyle changes to support one’s recovery.” [45], p. 550 “Across all three dimensions (friends, parents, fellow service-users), participants described interpersonal connections which made a positive difference for their insight and recovery.” [46], p. 239 |
Young people’s recovery as getting on with life like any other young person | “At this point in their recovery, the participants expressed that they were now thinking about getting on with their lives like any other young person, specifically negotiating separation-individuation issues with parents.” [40], p. 138 “Five participants highlighted a desire to ‘get life back on track’, in terms of management of symptoms, housing, employment and/or education.” [49], p. 12 “Some individuals indicated that social recovery was (or would be) experienced as establishing independent adult living, emphasizing that being recovered involved competence and maturity as a young adult.” [45], p. 550 |
The unique role of friends in young people’s recovery | “Twelve participants (40%) specifically identified social participation such as peer relationships and romantic attachments in their recovery definitions. Although relationships with family were often described as playing a crucial role in recovery, these relationships were only rarely described as a specific component of the meaning of being recovered.” [45], p. 550 “There was a shared idea that friends could provide support for participants to get back involved with everyday life, and to resume activities which might have been difficult to initiate alone (…) Participants experienced friendships differently to family relationships in the recovery process, which seemed to be related to a sense of less pressure or expectation.” [49], p. 10 “(…) the data illustrated the strengthening of existing relationships and participants identified a unique role for friends in the process of recovery.” [49], p. 13 |
Reciprocal Translations: Youth | Psychosis | Recovery | Identity |
---|---|---|---|
Expectations of progression in youth [40,41,42,43,45,46,49,50] | Changed relationships with oneself and the world during experiences of psychosis [40,41,43,45,48] | Young people’s recovery means getting on with life like any other young person [40,42,43,49] | The social formation of identity [42,45,47,49,50] |
Youth as a process of increasing independence [40,41,43,45,46,49] presupposing competence and maturity [46] | Psychosis/schizophrenia as stagnation and a challenge to ‘normal’ development in youth [40,41,42,43,44,46,47,48,49] | Recovery as an active and interactive process [40,41,42,43,44,45,46,47,48,49,50] | Making personal sense of psychosis and integrating experiences with identity [40,43,45,47,48] |
Youth as an identity process [47,48] | Social isolation [40,41,42,43,44,47,48,49], due to loss of friends [40,41,42,47,48,49], loss of capacity to participate [43,47,48], stigmatization [40,41,42,43,44,46,47,48], self-stigma [41,44,47,48,49] and silencing oneself as an act of care [50] | Recovery as the ability to function among others [44,45,47] | |
Hopes and expectations of increasing independence [40,41,43,45,46,49] | Experiencing difficult emotions [41,43,44,46] including thoughts about dying [41,43] | Need for reciprocity: The importance of giving and receiving support [43,46,47,49,50] | |
Optimism in youth [43,44,45] | Being with friends is more important to move on with life as a young person than being with parents or staff [45,49] | ||
Refutational Translations: Youth | Psychosis | Recovery | Identity |
Psychosis as illness [40,42,43,44,48,49] vs. psychosis as experience [41] vs. psychosis as experience and illness [46,47,50] | Personal growth occurs through maturation vs. through social validation [41,43] vs. [47] | Personal growth as an identity position following recovery vs. continuous feelings of incompetence, disability and restricted identity [41,44,45,47] vs. [42,47,49] | |
Peer service users provide support and potential friendships yet belonging with this group is associated with stigma [40,48,49] vs. [46,48,49] | Engaging with friends enables reflection of the role as emerging adult, yet it involves the risk of rejection and role loss [40,44] | ||
Engaging with friends enables participation in youth activities, yet it involves the risk of rejection and loss of participation [40,44] | The need to appear ‘normal’ to protect one’s identity from stigma may imply isolating oneself to avoid disclosure of psychosis causing further distress [40,44] | ||
A positive view of emancipation from parents presupposes sufficient parental support, while complicated relationships with parents involve ambiguous feelings about emancipation [40,42,50] vs. [41,42,50] | A broken vs. reshaped identity following psychosis [45,47] vs. [43,47] | ||
Extensive intimacy with a partner is soothing yet it involves further distance from others, which may evoke further social isolation [42] | |||
Relationships with peer service users may enable mutual support, yet adult inpatients’ distress during admissions threatens young people’s identity construction and hopes for the future [40,42,45,46,48] vs. [46] | |||
Young people may feel cared for yet stuck in the child’s position in relationships with staff who assume parental roles [40,43] vs. [46] |
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Storm, I.M.S.; Mikkelsen, A.K.K.; Holen, M.; Hybholt, L.; Austin, S.F.; Berring, L.L. Social Processes of Young Adults’ Recovery and Identity Formation during Life-Disruptive Mental Distress—A Meta-Ethnography. Int. J. Environ. Res. Public Health 2023, 20, 6653. https://doi.org/10.3390/ijerph20176653
Storm IMS, Mikkelsen AKK, Holen M, Hybholt L, Austin SF, Berring LL. Social Processes of Young Adults’ Recovery and Identity Formation during Life-Disruptive Mental Distress—A Meta-Ethnography. International Journal of Environmental Research and Public Health. 2023; 20(17):6653. https://doi.org/10.3390/ijerph20176653
Chicago/Turabian StyleStorm, Ida Marie Skou, Anne Kathrine Kousgaard Mikkelsen, Mari Holen, Lisbeth Hybholt, Stephen Fitzgerald Austin, and Lene Lauge Berring. 2023. "Social Processes of Young Adults’ Recovery and Identity Formation during Life-Disruptive Mental Distress—A Meta-Ethnography" International Journal of Environmental Research and Public Health 20, no. 17: 6653. https://doi.org/10.3390/ijerph20176653
APA StyleStorm, I. M. S., Mikkelsen, A. K. K., Holen, M., Hybholt, L., Austin, S. F., & Berring, L. L. (2023). Social Processes of Young Adults’ Recovery and Identity Formation during Life-Disruptive Mental Distress—A Meta-Ethnography. International Journal of Environmental Research and Public Health, 20(17), 6653. https://doi.org/10.3390/ijerph20176653