Impact of psychosocial support for people living with autoimmune disease lupus

A recent study by Cambridge university found that the Wren Project’s listening support significantly improves the mental health of individuals living in distress with lupus, compared to other psychosocial interventions.

Research also showed that 96 per cent of those who had received support from the charity, which offers support for people living with all autoimmune diseases, would recommend the service to others.

Individuals living with lupus typically experience significant levels of psychological distress, debilitating fatigue and impaired quality of life (QoL). This arises from disease symptoms, deteriorating relationships and challenges in work, alongside delays in diagnosis and treatment.

Despite the reduced quality of life for people living with lupus, limited psychosocial support is available. With almost 50 per cent of lupus patients experiencing suicidal ideation, more support is urgently required to meet the needs of a silenced population.

To add to this burden, immunocompromised lupus patients are understandably cautious regarding face-to-face contact. Many are also living with high levels of debilitating fatigue, issues around mobility, as well as geographic and socio-economic access inequalities.

The study aimed to evaluate the effectiveness of listening support, exercise (pilates) and video/text messages of support on lupus patient wellbeing.

Overwhelmingly, the Wren Project’s listening support was rated highest for improving mental health. Over 71 per cent of participants reported that the Wren Project had often/always made them feel better, compared to 57 per cent for Pilates and 48 per cent for the text/video group.

A further 89 per cent said listening support offered by the Wren Project was always/often helpful, in comparison to 62 per cent for pilates and 52 per cent for text/video). 96 per cent said they would recommend the Wren Project to others, while 92 per cent said our support was easy to access.

Following support from the Wren Project, participants reported significant improvements to their mental health, along with gratitude for the provision of a “safe space” to be listened to without judgement, or without feeling they were burdening family/friends.

“This is the only space I've ever had to talk about lupus in a totally open and honest way without feeling like I'm taking up someone's time… it was so refreshing and needed.”

”I hold in my heart the kindness I was shown by the Wren Project, and I know how much my feelings are improved by having someone who understands my condition and believes in me.”