Psychosis: the impact of social relationships in recovery

The connection between social support and psychological wellbeing has been well established. It may seem obvious to most of us, but having supportive relationships has been shown to help with self-esteem, feeling like we belong, and buffering the negative impact of stressful situations (Thoits, 2011).

This is especially important when considering that psychosis is often associated with problems in social relationships. Individuals with psychosis often have poorer and smaller social networks than individuals without a mental illness (Macdonald et al., 2000). Supportive social networks have been linked to recovery in severe mental illness, however relationships can also be a source of stress in certain situations (Aldersey & Whitley, 2015). It is therefore important to understand how individuals with psychosis experience social relationships in order to identify the aspects that aid and impede recovery.

McGuire et al. (2020) conducted a qualitative study aiming to explore the positive and negative aspects of social relationships and to see how these impacted the participants.

Research suggests that strong social support is linked to personal recovery in severe mental illness. Could social relationship act both positively and negatively?

Research suggests that strong social support is linked to personal recovery in severe mental illness, but social relationships can act both positively and negatively on people.

Methods

Participants with experiences of psychosis were recruited from a mental health support service in Glasgow. Support staff identified individuals who would be able to take part, and service users that were interested were put in contact with the researchers. In the end, the interviews of 6 participants were included in the study (3 male and 3 female). All participants apart from one were aged between 50 and 65 years old.

In their semi-structured interviews participants were invited to talk about positive and negative aspects of social relationships and the impact of these on their personal recovery. During these interviews, participants built a map of their social network using cardboard figurines to help them visualise and track their different relationships, and think about how connected they felt to the people they were mentioning.

The interviews were analysed using thematic analysis to identify emerging themes.

Results

Illness, identity and relationships

Participant social networks mostly included family members and support staff. Most interactions they described were centred around emotional and practical support with their illness (e.g. help with shopping, finances, companionship or reassurance). Very few participants had social interactions that were unrelated to their illness, hence reinforcing their identity as ‘ill’ and in need of support, “she is more about my illness than me”.

It was highlighted that, where possible, participants enjoyed being able to take a more active role in their relationships and reciprocating support in various ways, such as offering food or learning about the lives of their support workers.

Value of and reliance on social networks

Participants placed a lot of value on the support their relationships provided. Relationships were mentioned to help them feel safe, cope with daily tasks, cope with feelings of paranoia and anxiety, and reduce feelings of isolation. However, participants also highlighted a sense of dependency on these relationships: “without the service I wouldn’t know what to do”, which led to feelings of frustration when relationships were not reliable, consistent and regular.

Feelings of control in decision-making

Most participants did not feel in control of making their own decisions. This may be normalised by low expectations of control or the belief that others are more reliable: “I can’t say but my doctors can”.

Some participants discussed benefits of family and support workers ‘taking over’, such as not missing any of their appointments. Others described distancing from family and support workers when they felt they had no say in decisions, e.g. medication or hospitalisation. The way decisions were communicated to the service users appears crucial to whether the decision was seen as controlling.

Stigma

Participants expressed a desire to be seen as ‘normal’ and reported they often felt judged and criticised by others. They reported sometimes changing their behaviour to manage other people’s impressions of them and avoid negative consequences, e.g. rejection or being seen as ‘unwell’. This sometimes led to participants avoiding talking about their mental health altogether: “I have learned from that experience just to keep quiet and get on with it”.

The findings highlighted that very few participants reported interactions that were unrelated to their illness, while all were affected both positively and negatively by social relationships and their wider network.

Conclusions

Overall, the findings show that practical and emotional support plays a central role in participants’ relationships. This support was highly valued, but service users also described being dependent on it. The lack of interactions unrelated to illness management normalised participant’s identity as being ill; a desire to seem ‘normal’ was expressed. Experiences of stigma and judgement were described by service users, as well as a lack of control over decision making. Both of these experiences sometimes led to participants avoiding disclosing information about their mental health or distancing themselves from others.

In this study, practical and emotional support was crucial in participants’ social relationships, with some reporting lack of control on the implementation of shared decision making in mental health services, experiences of stigma and judgment and desire to be seen as ‘normal’ by others.

Strengths and limitations

The use of qualitative research methods allows for in depth exploration of service user experience, giving a voice to a marginalised group. This study gives valuable insight into the social networks of individuals with psychosis and showcases that relationships can have both positive and negative impacts.

Although multiple authors were involved in the analysis process, one of them worked at the mental health facility participants were recruited from and conducted the interviews; this may have biased that author’s analysis. The validity of the findings could have been increased if authors had discussed the results with the participants to make sure they had truly captured the service users’ lived experience.

Gender and age were the only participant characteristics listed in the paper, so sample diversity is difficult to comment on. Five out of six participants were aged between 50 and 65 years old, age is likely to affect social network composition. Participants were also all receiving long-term care from one specific third-sector organisation. The above reasons suggest that the findings may not be applicable to other individuals with experiences of psychosis.

Social anxiety is highly prevalent in people with psychosis (Michail et al., 2017). The fact that data was collected via interviews may have biased participant recruitment towards more socially confident service users. Service users with more social difficulty are likely to have different experiences in social relationships. In the future, researchers could offer remote options for data collection to make the study more accessible to those with greater social difficulty. Personally, I would find online chat programmes or discussion boards less intimidating than in-person interviews.

Interviews using online chats or discussion boards may be more accessible to service users with higher social anxiety, while it may be also increase the representativeness of the sample.

Implications for practice

This research has shed light on the social world of persons with psychosis and has pinpointed targets for further research and psychological interventions.

In this study, the participants were not diverse in age. Research suggests that social network size in psychosis may decrease with age (Thorup et al., 2006). It would be beneficial to replicate this research and look at younger individuals with psychosis to see if they have similar experiences in their social networks.

Service users’ relationships served largely for illness management, very few participants mentioned interactions with friends who were not involved in their care. Yet studies suggest that interactions with friends, rather than family, are important in promoting recovery (Bjornestad et al., 2017). The implementation of mutual peer support groups could help individuals with psychosis develop and maintain friendships outside their support network. Interacting with others who have shared similar experiences personally helps me feel more ‘normal’. Social difficulties associated with psychosis may cause problems with organisation and attendance; hence, minimally guided support groups facilitated by healthcare professionals may be a solution (Castelein et al., 2015). Furthermore, they are thought to be not only clinically, but also economically advantageous (Stant et al., 2011).

Participants felt a lack of control over decisions concerning treatment and care. This is echoed by findings that 60% of people with schizophrenia in the UK report not being involved in decisions about treatment (Stovell et al., 2016). Recently, there has been a call to implement shared decision making (SDM) in mental health treatment. SDM requires both the service user and the healthcare professional to share information, be involved in, and agree on decisions. Training healthcare professionals in this type of decision-making could empower service users to make decisions about their care (Farrelly et al., 2016). Thus, preventing them from disengaging from caregivers for fear of unwanted consequences.

Finally, participants reported experiences of stigma, sometimes leading them to alter their behaviour to seem ‘normal’. This has implications for stigma reduction, both in the wider population and for carers of individuals with psychosis. Psychoeducation for caregivers (information about a condition and its management) has proven to be effective in reducing stigma and reducing relapse in psychosis (Morgan et al., 2018; NICE, 2014). However, a study found that only 55% of carers in the UK engaged with carer-focused psychoeducation programmes (Royal College of Psychiatrists, 2019). This figure ranged from 0 to 100% depending on the mental health trust, so training individuals to deliver these programmes and to make them accessible to carers should be a priority.

This study has implications for stigma reduction across the wider population, psychoeducation for caregivers and implementation of shared decision making in mental health treatment.

Conflict of interest

None.

King’s MSc in Mental Health Studies

This blog has been written by a student on the Mental Health Studies MSc at King’s College London. A full list of blogs by King’s MSc students from can be found here, and you can follow the Mental Health Studies MSc team on Twitter.

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Links

Primary Paper

McGuire, N., Melville, C., Karadzhov, D., & Gumley, A. (2020). “She is more about my illness than me”: a qualitative study exploring social support in individuals with experiences of psychosis. Psychosis, 12(2), 128-138. [tandfonline abstract]

Other references

Aldersey H M, & Whitley R. (2015). Family influence in recovery from severe mental illness. Community Mental Health Journal, 51(4), 467-476.

Bjornestad J, Hegelstad W t V, Joa I, et al. (2017). “With a little help from my friends” social predictors of clinical recovery in first-episode psychosis. Psychiatry Research, 255, 209-214. [Sciencedirect abstract]

Castelein S, Bruggeman R, Davidson L, & Gaag M V D. (2015). Creating a supportive environment: peer support groups for psychotic disorders. Schizophrenia bulletin, 41(6), 1211-1213.

Farrelly S, Lester H, Rose D, et al. (2016). Barriers to shared decision making in mental health care: qualitative study of the Joint Crisis Plan for psychosis. Health Expectations, 19(2), 448-458.

Macdonald E M, Hayes R L, & Baglioni A J Jr. (2000). The quantity and quality of the social networks of young people with early psychosis compared with closely matched controls. Schizophrenia research, 46(1), 25-30. [sciencedirect abstract]

Michail M, Birchwood M, & Tait L. (2017). Systematic review of cognitive-behavioural therapy for social anxiety disorder in psychosis. Brain Sciences, 7(5), 45.

Morgan A J, Reavley N J, Ross A, et al. (2018). Interventions to reduce stigma towards people with severe mental illness: Systematic review and meta-analysis. Journal of psychiatric research, 103, 120-133. [sciencedirect abstract]

NICE (2014) Psychosis and schizophrenia in adults: Treatment and management. Available from: https://www.nice.org.uk/guidance/cg178/evidence/full-guideline-490503565

oyal College of Psychiatrists (2019) National Clinical Audit of Psychosis – National Report for the Early Intervention in Psychosis Spotlight Audit 2018/2019 (PDF). London: Healthcare Quality Improvement Partnership.

Stant A D, Castelein S, Bruggeman R, et al. (2011). Economic aspects of peer support groups for psychosis. Community mental health journal, 47(1), 99-105.

Stovell D, Morrison AP, Panayiotou M, & Hutton P. (2016). Shared treatment decision-making and empowerment related outcomes in psychosis: Systematic review and meta-analysis. The British Journal of Psychiatry, 209(1), 23-28.

Thoits P A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of health and social behavior, 52(2), 145-161. [sagepub abstract]

Thorup A, Petersen L, Jeppesen P et al. (2006). Social network among young adults with first-episode schizophrenia spectrum disorders. Social psychiatry and psychiatric epidemiology, 41(10), 761-770.