Experiences of the Quality of the Interplay between Home-Living Young Adults with Serious Mental Illness and Their Social Environments

Abstract

The purpose of this study is to explore the experiences of the interplay between home-living young adults in the community with a serious mental illness (SMI) and their social environment and how this experience influence their mental health and well-being in light of the theory of salutogenesis. In a qualitative study, nine young adults with SMI were interviewed. The interviews were transcribed and subjected to reflexive thematic analysis. The following three overarching themes characterized these young adults’ experiences of such interplay: (1) a sense of shame and feeling less valued in society, (2) challenges in engagement and maintaining relationships, and (3) the significance of social support in one’s family. Accordingly, the young adults experienced both the presence of good, constructive interplay with their social environment and deficits in this reciprocal feedback loop. Overall, this study illuminates the need for more tolerant health-promoting public attitudes to ensure that individuals with a SMI might experience better interplay by feeling that they are valued members of a nurturing society and that they can contribute to their local community. Participation in society should not be limited by one’s illness or expectations of being recovered before one can fully participate in society. Experiencing social support and inclusion in society is essential to strengthen self-identity and fight against stigma, thus promoting a sense of coherence, health and well-being.

Background

Mental health recovery is a process of transformation from a negative identity state marked by helplessness, brokenness and despair to a positive state of psychological well-being (Dell et al., 2021; Topor et al., 2022). Recovery from a serious mental illness (SMI) can be seen as an ongoing process toward a state of autonomy, safety and meaningfulness that includes rebuilding social relationships, maintaining hope, managing symptoms and fighting against stigma to promote a positive self-identity (Dell et al., 2021; Duff, 2016). Although recovery has often been regarded more as an individual process of changing one’s attitudes, goals and emotions, it is emphasized that this process must be seen in relation to social and interpersonal contexts and not as an individual journey (Topor et al., 2022). Additionally, the social environment and climate in the community clearly influence this process by affecting the development of self-identity and social participation (Davidson et al., 2020; Dell et al., 2021). Although research emphasizes the importance of feeling valued as an active citizen that matters in one’s community (Heimburg et al., 2021; Prilleltensky, 2020; Scarpa et al., 2021), public demands or expectations of being cured or being in recovery often prevent social participation and can thus negatively affect recovery (Davidson, 2020; Davidson et al., 2001; Topor et al., 2022). Experiencing positive and supportive relationships are identified as especially significant factors for promoting health and recovery, as these experiences contribute to a more positive self-identity and a sense of connectedness based on feelings of acceptance, hope, safety, meaning, belonging and self-value (Chronister et al., 2021; Davidson et al., 2020; Dell et al., 2021; Leamy et al., 2011); they also reduce withdrawal and the internalization of stigma (Chronister et al., 2013, 2015). In addition, it is essential to accept one’s mental illness as a part of life that needs to be managed and develop insight into how to manage the illness and how to promote and maintain positive health and well-being (Dell et al., 2021).

Several studies have shown the importance of supporting people with a SMI by creating opportunities for them to participate in society and experience being valued members of a community, thus promoting recovery (Harper et al., 2017; Topor et al., 2011, 2022). Snethen et al. (2021) emphasized that an intentional community effort to establish places where individuals experience being welcomed and included can be useful for promoting social participation, hope, and recovery. Furthermore, the social environment in such places should facilitate social interactions through the possibility of meeting and talking to others, as well as just experiencing being around others (Snethen et al., 2021). Additionally, these places do not induce fear of being stigmatized or rejected because of an individual’s illness as he or she feels included and does not expect a negative response from others.

Previous reviews show that the theory of salutogenesis and its model of health is especially relevant for mental health, as it includes the view that stressors are a natural part of life that individuals must relate to and try to cope with by using various resources (Eriksson & Lindström, 2008; Lindström & Eriksson, 2006). It is therefore important to increase knowledge about what inner and outer coping resources people with SMIs use and need to cope with stressors in daily life.

Few studies have been conducted on people with a SMI from a salutogenic health-promotion perspective (Jormfeldt, 2011; Langeland & Vinje, 2022). The theory of salutogenesis is suitable for use in the present study because it is a sociological theory that defines a human being as an open system; therefore, mental health and recovery are facilitated by the interplay between the person and their environment (Langeland & Vinje, 2022).

Research shows that SMIs often occur early in adulthood and are a major cause of disability among young adults (McGrath et al. 2008). In addition, studies indicate that stressors such as psychotic influence negatively affect the ability to identify and use available resistance resources and that it is essential to identify how people react to stressors to tailor treatment with the aim of reducing symptoms and restoring general function (Melle et al., 2008; Torgalsboen et al., 2018). To understand and provide the best possible treatment as well as learn how to create supportive and welcoming environments, we believe it is essential to explore how young people with SMIs experience the interplay between themselves and their environment and how this interplay influences their mental health and well-being.

The main aim of this study is therefore to gain in-depth knowledge of how home-living young adults with SMIs experience the interplay between themselves and the social environment from a salutogenic health-promoting perspective. Such knowledge is important with regard to the task of enabling home-living individuals with a SMI to experience sufficient support and motivation to identify and use appropriate recourses for promoting their mental health recovery.

The research question is as follows: How do young home-living adults with SMIs experience the interplay between themselves and their environment, and how does this experience influence their mental health and well-being?

Theoretical framework

The salutogenic model of health is based on the fundamental interplay between one’s sense of coherence (SOC) and inner and outer general resistance resources (GRRs) to promote the transformation of tension into coping and thus improve mental health (Langeland et al., 2016; Mittelmark et al., 2022). An individual’s SOC can be seen as his or her attitude or orientation toward life (Antonovsky, 1996; Lindström & Eriksson, 2006) and illustrates an ability to identify and activate GRRs and respond to stressors, thus promoting health and well-being (Lindström & Eriksson, 2006). Furthermore, the SOC is strongly influenced by different life experiences and demonstrates a person’s or groups’ confidence, in which stressors are perceived as structured and explicable (understandable), that the necessary resources are available (manageability) and that the stressors are challenges worth engaging in (meaningfulness) (Mittelmark & Bauer, 2022).

GRRs can be defined as “any characteristic of the person, the group, or the environment that can facilitate effective tension management” (Antonovsky, 1979, p. 99). GRRs illustrate a person’s inner and outer resources, for example, self-identity, quality of social support, material resources, intelligence and knowledge. Furthermore, GRRs are resources that over time provide feedback through life experiences that enables successful coping with stressors and thus leads to a stronger SOC. In contrast, when people experience general resistance deficits (GRDs), they feel very limited or no access to GRRs. GRDs are thus perceived as stressors that might negatively affect coping and health (Antonovsky, 1987). GRDs, such as low self-esteem, withdrawal, low social class, social exclusion, lack of close relationships and cultural instability, are stressors that may undermine the development of SOC due to negative life experiences (Antonovsky, 1987).

Preserving or developing a strong SOC is essential, especially for mental health, and due to the reciprocal relationships between SOC and GRRs, one’s placement on the different GRR-GRD continua will affect one’s strength of SOC, similar to how the level of SOC contributes to mobilizing GRRs to enhance tension management (Antonovsky, 1996; Idan et al., 2022a). A strong SOC will, for example, enable the use of social support and thus promote one’s self-identity (Langeland & Vinje, 2022). Weiss (1974) supports Antonovsky’s view on social support and identified attachment, social integration, opportunity for nurturing, reassurance of worth, reliable alliance, and guidance as social functions or “provisions” that may be obtained from relationships with others.

Methods

Design

To improve our knowledge of how home-living young adults with SMIs experience the interplay between themselves and the social environment and how this experience influences their mental health and well-being from a salutogenic health-promoting perspective, a qualitative design was employed. The subjective experiences of individuals were focused on in the qualitative design to elucidate lived experiences and disclose meaning through a process of understanding and interpretation (Lindseth & Norberg, 2004; Van Manen, 2014).

Recruitment and participants

This study is a part of the “Effects of Physical Activity in Psychosis” (EPHAPS) study; recruitment was performed via strategic selection (Patton, 2015) from the 83 (of which 72 completed) participants who had participated in EPHAPS (for further details, see Andersen et al., 2018; Engh et al., 2015). By making this strategic selection, we recruited participants who could provide descriptions and had experiences relevant to the research questions asked. The participants were recruited using the following inclusion criteria:

• Fulfill the DSM-V criteria for schizophrenia spectrum disorder (schizophrenia, schizoaffective disorder and schizophreniform disorder).

• Understand and speak a Scandinavian language.

• Between 20 and 30 years of age when participating in EPHAPS.

• Considered to be in their habitual state.

• Home-living residents in the community.

• Participated in the exercise group (due to another part of this study that explored mental health and physical activity, this criterion was applied).

After a joint discussion between the first author and EPHAPS researchers regarding participants relevant to the qualitative follow-up study, 14 possible participants were contacted by telephone and given information about the study and their participation. Potential participants were selected based on age, as this study focused on young adults, and from other researcher’s experiences from previous interviews in EPHAPS to ensure interest and ability to provide thorough descriptions of lived experiences. For various reasons, five were ineligible for participation, and nine (six men and three women) agreed to participate. Seven of the participants were unemployed and received state benefits. One had a regular paying job, and one received state benefits and worked a few hours a day in a municipal work initiative. Five lived alone in owned or rental housing, two lived with a partner and two lived with their parents. Further information cannot be provided for reasons of anonymity and confidentiality. To minimize the risk of possible negative consequences from participating in the study, the hospital management required that the current or last known therapists were contacted to discuss their patients’ participation before approaching the participants.

Data collection: qualitative interviews

Data collection was conducted using individual qualitative in-depth interviews. A semistructured interview guide was developed with open-ended questions, which were based on the topics of the research questions, to explore the meaning persons with SMIs attached to their lived experiences. The interview guide addressed topics related to self-perceptions, relations to others, relations to society, changes in their own view of themselves, relations with family and friends, etc. The questions that were asked included the following: In your own words, can you describe how you see yourself as a person? Did your own self-perception, i.e. your self-image or view of yourself, change in any way after you got the illness? What do you find useful to help you cope in everyday life, and do you have any specific strategies? How are your relationships with family members? And friends? How do you feel that the illness has affected you in terms of work or education? Has it been necessary to change your thoughts or desires about what you want to do in life because of the illness, and if so, in what way?

The questions served to invite the participants to talk about their lives in general and their perceptions of themselves. Moreover, we explored coping with challenges in everyday life and the use of support from others. The questions can also illustrate existential issues in life as well as the participants’ ability to identify and use different salutogenic resistance resources that facilitate coping. To capture the essential meaning of their stories, participants were encouraged to elaborate and reflect on their stories during the interviews. We found that the emergent themes were consistent across the participants based on the different topics discussed.

Prior to each interview, 30–60 min were spent creating a safe atmosphere and evaluating the participants’ mental state regarding the influence of symptoms, insecurity, etc. The participants were also asked how they evaluated their current mental health regarding symptoms and experienced stress.

All the interviews were conducted by the first author and lasted between 90 and 150 min. The interviews were conducted between July 2019 and November 2019 and were audio-recorded and transcribed verbatim by the first author. After each question and at the transition to a new topic, the participants’ answers were summarized and returned to the participants for validation.

The interviews were conducted in agreement with the patients on the premises of the Division of Mental Health and Addiction, Vestfold Hospital Trust in Norway. The participants were offered the opportunity to conduct the interviews in their homes if they desired. The last half of one of the interviews was conducted in the home of the participant at his or her request.

Ethical considerations

Both the follow-up study and the EPHAPS study were approved by the Regional Ethics Committee of Southern and Eastern Norway (reference number 2014/372) and complied with the principles of the Declaration of Helsinki. In health and medical research, there is a special requirement to exercise caution in research on vulnerable groups. While caution must be exercised, it is also important to remember that such groups should also be studied to promote health (World Medical Association, 2018). Prior to the in-depth interviews, it was agreed that the interviewer could contact the participants’ GP (general practitioner) or therapist if the interviewer saw indications of aggravation that required increased follow-up. None of the participants were in a condition that necessitated contact with a therapist or GP. To ensure that the participants provided informed consent and that they understood the aim and type of study, information on the study was given both orally and in writing and was repeated orally prior to conducting the interview. The participants were also informed of the possible benefits and risks, the aim of the study and that they could withdraw from the study at any point. During the in-depth interviews, the interviewer was aware of signs that could indicate that the subject was too difficult or made the participants uncomfortable. If there were indications that the subject made the participants uncomfortable, this was addressed, and the subject was changed if necessary to prevent the participant from experiencing unnecessary strain. To ensure anonymity and protect the participants’ identities, details such as places and names were changed. All the names used are pseudonyms to ensure the participants’ anonymity.

Data analysis

Reflexive thematic analysis (RTA) was applied to explore and understand the participants’ lived experiences (Braun et al., 2014; Braun & Clarke, 2021, 2022). RTA is a method for identifying, analyzing and interpreting meaning patterns (‘themes’) within qualitative data that can be used across a range of theoretical frameworks and research paradigms, as it is unlimited by theoretical obligations (Braun et al., 2014; Clarke & Braun, 2017). The salutogenic perspective used in this study contributes to focusing on experiences and factors relevant to health, SOC and resistance resources during the analysis process. The following RTA process was used and performed as an iterative process between the phases rather than as a linear process:

1. The first phase of the analysis consisted of becoming familiar with the data by reading and rereading all the transcribed interviews to acquire an overview of the lived and subjective experiences of the participants, noting initial thoughts, ideas and emerging themes.

2. Subsequently, the initial ideas or meaningful units that were thought to be relevant to the research question and the salutogenic perspective were identified and initially coded after thoroughly reviewing each interview.

3. The preliminarily coded ideas and prominent patterns of the participants’ subjective experiences were identified, condensed, interpreted, labeled and categorized into potential themes (patterns) across the interviewees.

4. The descriptions and quotes of the emerging themes that provided meaningful units were then identified, collated and sorted into three tentative main categories (perceptions of oneself and perceptions from others, social affiliation and challenges, relationships with friends and family). Furthermore, these various meaningful units were systematized and categorized into different themes using NVivo (version 12).

5. To ensure that a focus on the participants’ lived experiences was maintained, the relevance of the potential themes regarding internal homogeneity and external heterogeneity and similarity between themes was jointly examined. Overarching themes were identified, and to show differences and coherent relationships between the themes and subthemes, a thematic map was generated. The first, second and fourth authors carried out the first five phases individually and then discussed the findings in a joint analysis seminar.

6. To ensure internal validity and reduce the risk of research bias, the authors jointly discussed the process of the analysis and the findings to identify similarities and differences in prominent opinion content, themes and subthemes. Finally, the discussions resulted in more precise themes and subthemes that captured the descriptions and experiences that emerged in the interviews. Through the analytical process, we identified three main themes that characterized participants’ experiences of interplay: (1) a sense of shame and feeling less valued in society, (2) challenges in engagement and maintaining relationships, and (3) the significance of social support in one’s family. Table 1 shows an example of the analysis process.

Table 1. Example of the process of analysis.

Meaningful unit	Code	Subthemes	Main themes
“I’m feeling ashamed that I am struggling. I’m just so embarrassed and afraid to be judged in one way or another by telling people that I have schizophrenia or that I am schizoaffective. Because after I tell people, they start to think of that crazy person they have seen on TV or something like that.”	Perceptions of oneself and from others	Fear of rejection Downgrade themselves	A sense of shame and feeling less valued in the society
“I think I am sort of open but at the same time very private and withdrawn as a person… I enjoy being with others… being social… But in a way, it’s a bit of a bad combination that I like to be social but I don’t like people, especially not if there are too many.”	Need and long for social belonging	Feeling like an outsider among friends Fragile relations	Challenges in engagement and maintaining relationships
“I’m very fond of my family because they have always been there for me all the way, and I know they’re always going to be there for me…”	Feeling secure	Feelings of acceptance and support The importance of parental support	The significance of social support in one’s family

Results

In this section, we present the results (sub and main themes) from the reflexive thematic analysis regarding the social interplay that young adults with a SMI experience in their everyday life in their social environment.

A sense of shame and feeling less valued in society

The participants discussed their experiences of shame and feeling less valued in society. The participants had several experiences in their youth and later in life in which they felt they did not fit in among other people and felt that they were on the outside of the mainstream. One reason for these feelings was how they perceived other people’s impressions of them, and another reason was how they viewed themselves. The aspects of this main theme that will be described are (1) fear of rejection and (2) downgrade themselves.

Fear of rejection

The shame of being revealed as “different” emerged as an overshadowing fear that was described as very stressful by all of the participants and often resulted in periods of withdrawal from society. Furthermore, this fear of revelation negatively affected mental health through low self-confidence and negative self-perception. The fear of being revealed, not understood and stigmatized contributed to a dilemma regarding whether to tell others about one’s mental illness, as illustrated by this statement from Eva, who often experienced being revealed as “different” after a short time when being with others:

I feel less worthy as a human being when people see me as someone with a mental illness… That is why I am never around other people when I am feeling down or influenced by symptoms… I don’t want them to think of me as… sick.

A similar quotation regarding telling others about one’s difficulties and mental illness and the shame that is felt if revealed was also provided by Anne:

I’m feeling ashamed that I am struggling… I’m just so embarrassed and afraid to be judged in one way or another by telling others that I have schizophrenia or that I am schizoaffective… Because after I tell people, they start thinking of that crazy person they have seen on TV or something like that.

Ole stated that he had felt different all his life, a kind of “outsider,” to use his own words. Even though being diagnosed led to some sort of explanation, he would not identify himself with such illness. For several years, he avoided contact with people who had similar illnesses and actively tried to change his behavior in social settings:

I felt like I didn’t fit in anywhere, so I tried to change myself to be a person who fits in everywhere… I also chose to distance myself from people who had the same mental illness… and in a way ignore people with that illness.

As these quotes show, the fear of being seen as “different” can lead to strategies such as withdrawal or seeking contact with people without mental illness as an attempt to hide one’s “otherness” or having to deal with one’s own mental illness.

Downgrade themselves

The feeling of being a burden or feeling different was described as very challenging, and for some, these experiences could result in long periods of isolation at home, an increased feeling of a lack of a future and an increased feeling of loneliness. How these experiences were perceived was exemplified by a quote from Trond, who has comprehensively withdrawn from society over many years:

I feel like I’m a burden. I feel that it is demanding for people to be with me. I don’t want to be with others. I want to be alone, at home… There have always been things that have been difficult, but I used to like myself, who I was as a person. I don’t feel like that anymore, after I got sick. Now I’m struggling to see a future, and it wasn’t like that in the past - at least not that difficult… I was able to see a future.

Siri also expressed how she changed her self-image due to her illness and how the diagnosis was a large part of her sense of self-identity, which she expressed as follows:

I’m trying to say ‘I’m Siri’… However, I often define myself as schizophrenic even though I know I have to stop doing that. However, that’s a big part of me, and I am not very fond of myself… I have very good self-confidence. I’ve always had that. However, my self-esteem, which was also very good, was driven straight down, below the bottom.

As these quotes show, the participants experienced a negative impact on mental health by feeling unimportant and less valued as a person, and they often felt they were a burden on others. They liked themselves less after they became ill and did not want others to regard them as a person with a SMI but as a human being. Although they used to be self-confident, this changed into insecurity after they developed their illness. The desire to be accepted for who you are and not just to be seen as mentally ill was an experience that all the participants shared. The solution sometimes could be to withdraw from family, friends and public spaces to avoid these emotions.

Challenges in engagement and maintaining friendships

The participants discussed the value of having good friends in their lives and that it was very damaging and painful when friends disappeared during the first years of their illness. Furthermore, the loss of friends contributed to a sense of fear and a feeling of being on the outside of society. Even if the participants had made new friends or reconnected with old friends, they often described a sort of fragile sense of inclusion and acceptance and that being social could be a sort of divided experience. The aspects of this main theme that will be described are (1) fragile relations and (2) feeling on the outside.

Fragile relations

Even though friendship could be experienced as fragile and challenging, the participants stressed the importance of having friends in some way or another. Moreover, friends positively affected mental health through increased self-value as a feeling of being a part of a community. This was shown by Erik, who, similar to most participants, had very few friends but felt that his friends were very supportive and accepted his illness:

I am not the best at maintaining relationships, but my friends are very important to me. To have the kind of relationship that goes beyond family, someone to have fun with, or those kinds of things. However, if someone thinks negatively of me, then I don’t necessarily want them as a friend either.

Both Siri and Ole had experienced being abandoned by people they thought were truly good friends due to their mental illness and emphasized the value of feeling accepted, supported and having a sense of belonging. Siri’s apt description can be an example of such an experience:

It was very painful… I was terrified about everything that happened inside of me, and it became even more frightening when everything I had on the outside [support from friends] also disappeared.

Although Ole struggled to accept his mental illness, he found it easier and of great value to socialize with people with similar illnesses, as they could understand his challenges:

Being with others with similar mental illness or problems as me is easier… a shared problem so to speak… To talk about all kinds of strange things and simultaneously learn from others is exciting… Being able to help others with their insecurity or difficulties and contribute to their well-being by using my own experience feels very meaningful.

Friends are important for experiencing being a valued part of the community, and they create opportunities for both receiving and providing nurturing.

Feeling like an outsider among friends

However, despite the desire to have friends, being with friends or other people did not always feel meaningful and could be a sort of divided experience. Both Frank and Espen talked about the complexity of feeling like an outsider when surrounded by others, as aptly exemplified by this quote from Espen:

I think I am sort of open but at the same time very private and withdrawn as a person… I enjoy being with others… being social… But in a way, it’s a bit of a bad combination that I like to be social but I don’t like people, especially not if there are too many.

Trond was the only one who specifically expressed being affected by psychotic symptoms on a daily basis, which caused almost paralyzing anxiety and made being around other people very stressful. Due to these experiences, he had chosen to stay at home most of the time for many years and used online computer games as a way to be social. He described this kind of social contact as less stressful and emphasized that he regards many of the people he plays with as truly close friends, even though their only contact is through online gaming:

I’ve never met them, but I consider them my friends. I really do. There are a few, two three, maybe four or five, who I share more with and am really close with… It is much easier for me to write and explain how I feel and how things are going than to tell a friend [face to face]. It works much better for me this way. It works really well, and it gives me a sort of community, the ones I play games with. And sometimes, when I manage, we also talk through Skype or something similar [only audio].

As summarized by Espen, “… just getting some sort of confirmation that there actually is someone there for me…” Experiencing having friends, even if only online friends, in addition to family seems to be crucial for people with a SMI and positively affects mental health by providing increased meaning in everyday life and a sense of belonging to a community.

The significance of social support in one’s family

In addition to friends, support in their own family was described as essential to the participants and provided a feeling of having a safe space. Some of the participants had very strong and close ties to their families, while others had a more complicated relationship that they often related to troubled periods before they were diagnosed with their illness. The aspects of this main theme that will be discussed are (1) feelings of acceptance and support and (2) the importance of parental support.

Feeling of acceptance and support

Family was consistently described as very important because participants felt loved and supported through the extensive challenges posed by the illness. The importance of such a relationship might be shown by these quotes from Erik and Siri, who both described having very close relationships with their family members:

I’m very fond of my family because they have always been there for me all the way, and I know they’re always going to be there for me… I really like that we can talk about almost anything without a risk of stepping on someone’s toes. [Erik]

Having my husband and my mum and dad creates a sort of feeling of safety and predictability in my life. [Siri]

The value of experiencing caring support from close relations beyond the nearest family was also described as an experience that positively affected mental health by making participants feel valued and nurtured. Anne had a close relationship with her uncle and talked about how he showed sincere interest and care, as expressed by the following:

My uncle is very caring and understanding. I feel that he truly cares. He asks things like: How are things with you, really? And if I answer briefly, he asks me to be more specific and tell him more. I really feel that he cares for me.

Being supported by family and relatives made participants feel seen and accepted and gave them feelings of safety, nurturing and predictability in life.

The importance of parental support

Approximately half of the participants described having parents who provided support and encouragement by trying to be protective and show acceptance. This can be exemplified by Siri, who described her family as very protective and well-meaning, which contributed to a basic sense of safety and acceptance. However, due to the early onset of her illness and being overly protected from emotional stress during her upbringing, she felt that she had an unhealthy addiction to her parents and a lack of independence:

They have always been very cautious and protective, especially when we visited families with children. They were always afraid that I would get tired and sick. I think I could have been a little more confident in myself if I had managed to detach myself a little more. I kind of need confirmation from mom and dad because I feel I’m not an adult in a way.

Other participants described an upbringing in which they did not always feel necessarily supported and understood by their parents, which negatively affected mental health and caused despair. Lack of sufficient parental support can be exemplified by Espen, who, despite describing a very challenging upbringing due to having an authoritarian and dismissive father, also experienced a loving and supportive mother with whom he still has a close relationship:

Although she wasn’t always allowed to be supportive, she is the one person who has always been there for me… She understands that I need to talk about my thoughts and feelings in order to see things more clearly… Not block or suppress them, but rather to accept that they are there… The fact that she actually listens helps a lot… and eventually the difficulties sort of disappear…

The participants described experiences that affected their health and well-being, such as being abandoned by friends when facing challenges and needing support and understanding during childhood and adolescence. Relationships can be very challenging, but participants need and desire them. Families provided a foundation for a sense of safety and care that was very important in their lives. However, some participants had experiences when they grew up in which their parents were not supportive enough or did not have the opportunity to be supportive, which increased their perceived challenges.

Discussion

The aim of this study was to explore and improve our knowledge of how home-living young adults in the community with SMIs experience the social interplay between themselves and their social environment and how this experience influences their mental health and well-being from a salutogenic health-promoting perspective.

From a salutogenic perspective, the participants described how negative life experiences such as lacking social support and exclusion negatively affected crucial elements in life, such as experiencing hope, value, belonging and connectedness. In addition, the results show the importance of having the experience of being seen as a whole person (not as only a diagnosis) and of experiencing high-quality social support to be able to promote health and social participation and fight against stigmatization. Overall, our study suggests that high-quality social support, such as being accepted, is crucial for good interplay and thus mental health and well-being as well as the fight against stigmatization. Different positive life experiences in terms of social interactions involving inclusion and acceptance from friends, family, and society in general positively affected the participants’ sense of belonging, thoughts, and perceptions of themselves. Experiences of not feeling a part of society were described as a major factor that seemed to negatively affect the participant’s mental health through shame (due to stigma) and feeling like a burden and feelings of failure. Furthermore, experiencing social support seemed to contribute to increased health and a sense of well-being through a more positive self-identity and feeling of value, and this interplay was important to overcome different challenges in life.

Quality of social support – a cornerstone for coping in daily life

The findings reveal that these young adults with SMI experienced deficits (GRD) in their social relations as they were struggling with deficits in belonging, confirmation of self-worth and social integration (Weiss, 1974). Furthermore, the participants in this study also experienced deficits in social relations, such as insecurity and feelings of being outsiders. However, they also experienced the value of receiving high-quality social support, especially from family members. This was therefore emphasized and longed for by the participants. This coincides with the theory of salutogenesis, which defines the quality of social support as a crucial resource for promoting the development of positive self-identity, SOC, health and well-being (Langeland & Vinje, 2022). Furthermore, experiences of nurturing, value and alliances through social support positively affect one’s SOC and GRRs and enable the mobilization and increased use of social support due to a stronger SOC (Langeland & Vinje, 2022; Langeland & Wahl, 2009). Furthermore, they emphasized the importance of being valued in society and nurturing trustworthy relationships with friends and family. They indicated that online friends might also be good support. These findings are in line with Chronister et al. (2013), Chronister et al. (2021), Davidson et al. (2004), Dell et al. (2021) and Topor et al. (2022), who argue that the value of having positive relationships and support in one’s environment are essential factors that promote and preserve health. Additionally, social support prevents the withdrawal and internalization of stigma (Chronister et al., 2013; 2015). Furthermore, Davidson et al. (2020), Duff (2016), Heimburg et al. (2021), Prilleltensky (2020), Scarpa et al. (2021), Snethen et al. (2021) and Topor et al. (2022) also emphasize that nurturing communities by being open and tolerant of inequality promotes health and well-being, as this approach contributes to positive interplay by enabling the individual a more positive self-identity and view himself or herself as a healthy and socially active person.

The value of social support from friends and family was especially underlined in our study, and the importance of feeling included as a member of society and experiencing consistent emotional bonds was highlighted. However, our results also illustrated that these relationships could often be experienced as fragile and emotionally challenging due to previous life experiences such as rejection and a lack of sufficient support and understanding. Experiences of being abandoned by friends seemed to lead to loss of emotional closeness to one’s social group and inconsistency by not experiencing order and structure in one’s environment. Eriksson and Contu (2022) emphasized that experiencing emotional closeness and especially emotional consistency when growing up is essential for developing a strong SOC. Even though families of persons with SMIs can contribute to a basic sense of acceptance and value in life, a lack of nurturing and understanding, as well as overprotection and rejection, was also experienced by the participants in our study. These factors seemed to have led to a negative interplay via reduced coping abilities due to having developed a lower SOC and/or low GRRs. From a salutogenic perspective, experiencing positive parental support when growing up is considered to be an essential GRR for developing a higher SOC. However, negative parental support (a GRD) is considered to be a risk factor for developing a lower SOC through lower self-esteem and more negative attitudes toward life (Idan et al., 2022b). Furthermore, to create an SOC-stimulating environment, in line with Idan et al. (2022b), we find that it is important to experience care, a balanced load and consistency and that parents are a resource that shows how stressors can be seen and managed.

The need for some sort of protective withdrawal due to increasing symptoms or feeling negative emotions (the feeling of being a burden, experiencing low value and a lack of hope for the future) due to the shame of being revealed was often described as a necessity to manage stressful situations. The necessity of some sort of withdrawal through having a safe place where one can reflect, experience control, and gather strength was found by Duff (2016) and seemed essential to promote recovery. Short periods of withdrawal as described by some might thus be seen as salutogenic and a resistance resource to provide a sense of safety, load balance and protection to avoid experiencing negative emotions through the fear of being seen as mentally ill. However, from a salutogenic perspective, withdrawal can also be seen as a GRD due to low self-confidence, fear of rejection and strong illness-identification. Longer periods of extensive withdrawal seem to maintain or reinforce one’s negative self-perceptions and increase the feeling of a lack of social support, thus possibly leading to destructive interplay and thus a lower SOC and GRDs. Accordingly, such extensive withdrawal and limited social participation seem to lead to a negative loop and result in feeling less valued, holding negative attitudes toward life and experiencing a lack of hope regarding better health and well-being. This is in line with Clayton et al. (2020), Chronister et al. (2015) and Chronister et al. (2013), who underline that the risk of developing a negative self-perception, such as feeling unimportant and not needed, increases with withdrawal and lack of participation in society. The combination of withdrawal and limited social participation might be an example of developing GRDs and thus a weaker SOC (Antonovsky, 1987). This underscores the importance of experiencing oneself as a valued, active, socially participating citizen and experiencing social support. Experiencing good social support positively promotes one’s self-perception, identity, SOC and GRRs (Antonovsky, 1987; Langeland & Vinje, 2022).

These results were also found in the studies of Chronister et al. (2013) and Snethen et al. (2021), as they revealed that the tendency of withdrawal can be reduced by feeling welcomed and supported and experiencing inclusion and acceptance from society.

The tension between the person and the diagnosis

As shown by the results, having a SMI seemed to affect the participants’ self-image through the shame of being revealed as mentally ill, and the fear of being stigmatized made them avoid sharing their challenges. It appeared that the inherent shame of both having an illness and being revealed as having an illness contributed to the internalization of the stigma, as the participants described not liking themselves after developing their illness. From a salutogenic perspective, these findings might illustrate the importance of being seen and viewed oneself as a person beyond one’s mental illness to facilitate the development of a constructive self-identity and thus being able to use social support, such as the support of family and friends, to fight against stigma. The importance of appraising stressors, such as stigma, as challenges rather than threats and thus developing a stronger SOC was emphasized by Antonovsky (1987) and by Rüsch et al. (2009a, 2009b) to create the necessary motivation to identify and use appropriate GRRs to cope with the situation. Rüsch et al. (2009a, 2009b) also emphasize that one’s sensitivity toward rejection increases the risk of internalizing stigma by undermining perceived social support.

From a salutogenic perspective, our results illustrate the importance of having resources to fight against stigma when struggling to perceive oneself as a person rather than a diagnosis and finding sufficient social support. Furthermore, the theory of salutogenesis emphasizes that internalizing stigma is related to experiences of a lack of social support (a GRD). This deficit in the interplay contributes to the development of negative self-perceptions (i.e. low self-value, self-image and self-esteem) and a lack of meaning and hopelessness, thus possibly leading to lower SOC and GRDs. Moreover, lack of meaning and hopelessness are especially unfortunate, as the meaningfulness component in the SOC influences one’s degree of motivation, good feelings and engagement, hence reducing the ability to cope with inner and outer stimuli (Antonovsky, 1987). Being able to support oneself as a person and find support in one’s social network to promote a stronger self-identity can be seen as having a strong SOC and increases one’s willingness to reject stigma.

Conclusions, implications for practice and future research

Our study supports the need for a more tolerant health-promoting public attitude toward people with a SMI. A more tolerant attitude will promote communities where people with a SMI can experience feeling welcome and being a valued member of a nurturing society and contribute to their local community (Davidson et al., 2020; Duff, 2016; Harper et al., 2017; Heimburg et al., 2021; Prilletensky, 2020; Snethen et al., 2021; Topor et al., 2022). Furthermore, participation in society should not be limited by one’s illness or expectations of being recovered before one is allowed to participate in society, as emphasized by Clayton et al. (2020), Davidson (2020), Heimburg and Ness (2021), Davidson et al. (2001) and Topor et al. (2022). The findings in our study illuminate why it is important to focus on how to help fight against stigma by promoting different GRRs, such as experiencing oneself as a whole person rather than a diagnosis, thus strengthening self-identity, health and well-being among people with SMIs (Langeland et al., 2016; Langeland & Vinje, 2022). As shown by our study, the participants underlined the value of feeling included and supported, which is essential for strengthening self-identity and fighting against stigma (Langeland et al., 2016), and this also possibly promotes their SOC. Accordingly, there may be less need to use withdrawal as a resistance resource, which is not health promoting in the long run. This recommendation is supported by Duff (2016) and Topor et al. (2022), who stress the need for a change toward supporting, identifying and enquiring about people with a SMI to participate in society. Furthermore, as emphasized by Snethen et al. (2021), an intentional community effort focusing on creating welcoming places with atmospheres supporting mental health might be a crucial GRR, as it might be useful for promoting positive experiences and social interactions, feeling safe, and feeling hope, thus promoting health and well-being. It is also possible that friends, family and mental health care professionals should facilitate the use of welcoming places (e.g. libraries or cafés) by introducing such places to people with SMIs. In this way, people with SMIs can experience positive social interactions by feeling included, safe and valued, thus promoting the use of such places.

Our study contributes to increasing in-depth knowledge about home-living young adults in the community with SMIs. However, there is a need for additional studies, both qualitative and quantitative, that explore the interplay between identity and social support among young adults with SMIs, especially in the areas of acceptance in society and relationships, perceptions of oneself and others, and determining how to promote friendship and social belonging among young adults with SMIs. Furthermore, it would also be interesting to explore whether differences exist among other age groups as well as other stratification factors, such as ethnicity, gender and social class. Finally, we need more studies that explore strategies to reduce stigma, increase tolerance and promote social participation.

Limitations and strengths of the study

Although people with SMI in general might be difficult to recruit due to their mental state, the present study managed to include nine participants. A larger and more heterogeneous sample could have provided a larger variety in terms of descriptions and experiences. However, the interviews lasted up to two and a half hours, which allowed the participants to give thoughtful, various and complementary descriptions of their experiences. Additionally, relevant experience, use of an established theory (the theory of salutogenesis) and a strong dialogue between the participants and the researcher indicate high “information power” and thus a sufficient number of participants (Malterud et al., 2016, 2021). Several of the participants had met the interviewer in the role of an employee in the EPHAPS study when participating in this study. It is difficult to assess how this relationship affected the interviews and the responses shared. It is possible that this inhibited the participants from sharing personal thoughts and experiences; however, it is also possible that this contributed to an increased sense of security and thus promoted a good climate for sharing experiences and perspectives.

Acknowledgements

We thank all the participants for sharing their views and experiences. We would also like to thank Professor Larry Davidson for his use of time to read through the draft manuscript and provide his constructive feedback.

Disclosure statement

The authors declare that they have no competing interests. The authors have not received any funding or benefits from industry or elsewhere to conduct this study.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.