A systematic review of the lived experience of alopecia and an empirical study exploring self-compassion, coping, and sexual quality of life in females with skin conditions

Skin conditions affect many people worldwide and can have an impact on both physical and psychological wellbeing. In addition, some skin conditions are thought to be exacerbated by stress. Research has shown that individuals with skin conditions may be more likely to experience psychological distress and develop mental health difficulties. The visible nature of skin conditions can result in feelings of shame and people may experience stigmatisation from others. This can result in avoidance of social situations and worries about exposing skin to others, affecting both social and sexual wellbeing. Whilst some individuals with skin conditions may experience significant psychological distress, others cope well with the challenges posed by their condition. It is therefore important to understand both the challenges of living with a skin condition and the factors associated with successful coping, so psychological interventions can be developed for those who need them. The systematic review aimed to understand what it is like to live with alopecia, a skin condition which results in hair loss, from the perspective of people that have experienced it. The empirical study examined the impact of different ways of coping on sexual wellbeing and skin shame in females with skin conditions. The systematic review examined the experience of living with alopecia. Previous research has highlighted some of the psychological and social challenges that people with alopecia face. To develop interventions, it’s important to hear the perspectives and voice of those living with the condition. The review looked at studies that investigated the lived experience of alopecia, 22 studies were identified by searching electronic databases and reference lists. The key themes and findings were examined, and the studies ranged from low to high quality. The words participants used to describe their experiences and author interpretations were coded, then organised into themes. This resulted in five themes related to: the impact of hair loss on changing identity; the difficult journey of learning to live with alopecia; the way social factors both help and hinder people with alopecia; the complexity of concealing hair loss; and the treatment experiences of those living with alopecia. The results highlighted the challenges of living with alopecia, the varied ways in which people cope with the condition and the complexities of this, and the need for the emotional impact of alopecia to be considered in consultations with health professionals. Further research is needed to investigate the effectiveness of psychological interventions for individuals with alopecia on a larger scale. The empirical study aimed to further our understanding of what factors might be important in maintaining sexual wellbeing in females with skin conditions. Previous research has found that self-compassion is important for reducing psychological distress and increasing sexual quality of life. Self-compassion involves treating oneself with kindness and care in the face of suffering and extending the same compassion that we would show to a friend who is suffering, to ourselves. This research looked at whether self-compassion is related to sexual wellbeing and skin shame in females with skin conditions, and the impact of how people cope. Adult females with skin conditions completed an online survey. The results showed that those higher in self-compassion had better sexual wellbeing and experienced less skin shame. Defeatist coping, such as avoidance, and judgements of how well one is coping, were mediating factors in the relationships between self-compassion and sexual wellbeing and self-compassion and skin shame. The survey also included open-text questions in which participants commented on the impact of their skin condition on sexual wellbeing, how they cope with the challenges posed by skin conditions, and their experiences of seeking support. The results support the use of compassion-focused interventions for females with skin conditions, with the aim to reduce distress related to one’s skin and improve sexual quality of life. However, further research is needed to investigate how self-compassion impacts sexual wellbeing and skin shame. Furthermore, the findings from the open-text questions highlight the importance of healthcare professionals acknowledging the potential impact of skin conditions on sexual wellbeing. Both the systematic review and the empirical paper contribute to our understanding of the experience of living with skin conditions and the psychological factors which may be associated with living well with a skin condition. Our findings highlight the need for evidence-based psychological interventions to be developed and investigated in people with skin conditions and the importance of specialist psychological support being available to those who require it