Living with chronic and severe mental illness: The value of social support

Humans are social beings whom by nature have a fundamental desire to establish meaningful connections with others and belong somewhere. People living with severe mental illness often struggle to maintain these interactions and may benefit from social support interventions in the primary healthcare setting, writes Leana Meiring.

Social interaction is such a normal part of life that we can easily take it for granted. This became strikingly apparent to me when I had the opportunity to facilitate a community-based social support group for people living with chronic and severe mental illness.

In this article, I share some of my personal experiences with the group members, some of their stories, and the lessons learned from the research project based on this initiative. The study aimed to highlight the value of the support group and the use of postgraduate psychology students as group facilitators to supplement overburdened mental healthcare service providers in South Africa’s primary healthcare system.

Rehabilitation and support
It is generally accepted that medication alone is not enough to treat mental illness holistically. Whether one is feeling depressed or anxious or experiences more severe symptoms such as hallucinations (seeing or hearing things others do not) or delusions (false beliefs about reality), taking a pill might ease the symptoms, but does not help people deal with the underlying social or emotional problems that cause or result from the symptoms.

In severe forms, mental illness is incapacitating, preventing one from doing or taking part in normal everyday activities such as attending to personal hygiene, socialising, or earning an income. Apart from that, many people with mental illness experience stigmatisation and in cases where they display more obvious symptoms and behaviours, social rejection and isolation.

Providing supportive resources to people with mental illness is a vital part of treatment and rehabilitation. South African mental health policy and legislation advocate for and prescribe that support services are available to service users in primary healthcare settings as part of their treatment and rehabilitation plans.

However, due to understaffing and high patient loads the mental healthcare nurses often do not have the time or capacity to provide these services and resort to only giving medication. This calls for exploring alternative ways to offer cost-effective support services to these patients to help relieve the suffering caused by their mental illness.  

Support group intervention
In response to the need to offer support services to service users in primary healthcare settings, the Tshwane District Department of Health in partnership with a local university psychology department entered into a collaborative partnership. Postgraduate psychology students were placed at clinics and community health centres around Tshwane to assist mental healthcare nurses with the facilitation of support groups.

Students received skills training and weekly supervision from the study leader at the university. The groups catered to the specific needs of the different sites. Groups targeted either the information or social support needs of service users. In this case, we initiated a social support group to offer socially isolated service users an opportunity to socialise. We established an open group in 2010 that allowed for new members to join and existing members to leave if they wished.

Group members changed over the years. Each year, there were roughly 10 to 12 members involved and the group size fluctuated between 6 to 8 members at a time. The group was open to any service user at the mental healthcare centre and included members of varying ages and diagnoses including schizophrenia, major depression, bipolar, and panic disorder. Group activities entailed informational talks and discussions, singing songs, playing games, sharing problems and personal experiences, offering emotional support and advice based on their lived experiences with mental illness, as well as a fundraising project (selling second hand clothes). The money raised was used to go on annual outings such as to the movies and the zoo.

Intervention outcomes
During the initial stages of the group’s establishment, the members were reserved and shy and the interaction between them limited. Group members shared their experiences of how their lives were affected because of their mental illness. Many shared that they were unable to work and experienced social rejection which led to isolation and inactivity. Their stories revealed the stigmatisation and social isolation they experienced:

“Because I'm mentally disturbed nobody wants me and I'm always alone ... I'm unable to communicate with others because others say we don't want to speak to this one, he is sick. So, when I greet them, they just keep quiet.”  - Participant 5

“There is nothing I am doing at home. All I do is sleep ... just sitting, alone ... I wake up, maybe sometimes I wash, sometimes I don’t wash ... I don’t have a friend anymore … when you sit alone, you won’t think of nice things, you will only stay sleeping.” - Participant 3

Their interaction patterns showed that they had severe difficulty with communication and social interaction. Most of them lost their friends and spent their days sitting around at home. The stories revealed how they lost their ‘humanness’ as their social rejection left them completely isolated to the point that their socialisation skills were very much deteriorated.
However, after some time the members who attended regularly showed remarkable improvement in their social skills and their outlooks on their lives and their capabilities. Members reported that the group helped them to deal better with their problems and gave them something to look forward to each week. These changes sparked my interest to do research to find out what the group members gained from attending the group. 

The findings revealed that the group offered the members a sense of belonging and a means of emotional and social support. The group also offered opportunity for learning, encouraged mental and physical mobilisation and stimulation, and served as an additional link to professional services. Although the study findings cannot be generalised due to the small sample size, the stories told by the participants showed how the group helped them to feel more socially included, cope better with their symptoms and engage in meaningful activates as part of rehabilitative services.

“When we are in the group, we can give each other strength and advice... and when someone has a problem, we can talk about our problems... the hospital helps us with medication and the group members with advice... ”     - Participant 5

Concluding remarks
The findings suggest that student-facilitated support groups could offer a viable supplement for offering support to service users in primary healthcare settings. It offers valuable learning and practical experience for students and support for the overburdened mental healthcare nurses. Future research could explore the initiative on a larger scale to determine to what extent the groups assist members to heal and recover from mental illness.

Everyone has a need to fit in and belong somewhere. Support groups are important resources that should be made available to services users in the primary healthcare setting to assist with their recovery in addition to the medication they receive for their physical symptoms. It is part of their constitutional right and healthcare professionals are obligated to make these services available. 

About the author:
Leana Meiring is a PhD research intern in the Education and Skills Development programme of the HSRC. This article is based in parts on the article by L Meiring, M Visser, and N Themistocleous, “A student-facilitated community-based support group initiative for Mental Health Care users in a Primary Health Care setting” published in Health SA Gesondheid - Journal of Interdisciplinary Health Sciences, 2017, Vol. 22: 307-315.