Mental health support across the sight loss pathway: a qualitative exploration of eye care patients, optometrists, and ECLOS

Visual impairment, ranging from mild to complete blindness, affects a significant global population. The experience of sight loss is profoundly emotional, often leading to mental health challenges such as depression, anxiety, and post-traumatic stress disorder. While mental health support, including counseling and support groups, is beneficial for visually impaired individuals, the availability and accessibility of such services within the UK eye care pathway remain largely unknown. Existing evidence suggests that ECLOs provide valuable support, but their presence isn't universal. Furthermore, the extent to which referring optometrists offer mental health signposting is unclear. This study aims to investigate the experiences of mental health provision within the eye care pathway from the perspectives of patients, optometrists, and ECLOs—key professionals who can facilitate early interventions. Understanding their perspectives will inform future research and policy recommendations to improve patient well-being.

Previous research has established a strong link between visual impairment and various mental health conditions, including depression, anxiety, and PTSD. Studies have highlighted the emotional trauma experienced by patients at diagnosis and the need for early support intervention. The importance of early support has been emphasized as patients often delay seeking help until reaching crisis points. While the benefits of mental health support services for visually impaired individuals are well documented, information on current UK provision across the entire eye care pathway is limited. Some research suggests the valuable contributions of ECLOs, yet their service isn't widespread. The role and extent of signposting by referring practitioners like optometrists are also yet to be fully explored. This gap in knowledge regarding accessibility and quality of mental health support from multiple perspectives (patients, optometrists, and ECLOs) necessitates this study.

This qualitative study employed semi-structured interviews with 28 participants: 18 patients with various eye conditions (including those registered as sight-impaired or severely sight-impaired, and those without registration), 5 referring optometrists, and 5 ECLOs. Participants were recruited purposively through multiple channels, including third-sector advertisements, previous research participants, word-of-mouth, and marketing leaflets. The study received ethical approval from the Anglia Ruskin University School of Medicine Ethics Panel. Informed consent was obtained from all participants, including consent for quote usage in publications. Each interview, conducted by the same researcher to minimize inter-rater variability, lasted approximately 30 minutes. Open-ended questions explored experiences across the eye care pathway, access to mental health support (intentionally broadly worded), and areas for improvement. Patient interviews covered initial symptoms, referral, diagnosis, hospital treatment (if applicable), and post-acute care. Practitioner interviews focused on the eye care pathway, experiences at each stage, and areas needing improvement. Interviews were transcribed and checked independently by two researchers. NVivo software (Version 12) was used for the narrative analysis of the responses by two researchers, with results synthesized into a narrative analysis.

The analysis revealed three key themes: 1. **Emotional Trauma of Diagnosis:** Many patients described the significant emotional distress associated with diagnosis, highlighting the immediate need for mental health support. The trauma extended to families, particularly in cases of genetic eye conditions. Quotes included expressions of feeling abandoned and overwhelmed. 2. **Lack of Signposting for Mental Health Support:** A substantial number of patients reported never receiving any offer of mental health support or being signposted to relevant services. This lack of awareness was consistent across patient accounts. While some patients were aware of existing support resources, their access was often dependent on self-initiation rather than proactive referral. Positive experiences were highlighted when support was readily available, illustrating the crucial impact of timely intervention. ECLOs and optometrists corroborated the patients' experiences, confirming the insufficient availability of support and signposting. 3. **Optimal Point for Mental Health Support:** Patients identified the point of diagnosis as the most crucial time for support. However, ECLOs emphasized the ongoing need for support throughout the entire sight loss journey, noting that individuals might experience emotional dips even years after diagnosis. Optometrists held differing views on the ideal point for support, with some suggesting secondary care, others primary and secondary care, and one highlighting the need for improved training to better guide patients. One key challenge identified was that optometrists often felt unqualified to offer signposting and support themselves, suggesting that training and resources were required to equip them better to meet this need.

This qualitative study underscores a critical gap in mental health support services within the UK eye care pathway. The findings corroborate previous research emphasizing the need for support at the point of diagnosis. However, this study significantly expands upon previous work by incorporating the perspectives of optometrists and ECLOs, revealing a pervasive lack of readily available support and proactive signposting. The inconsistency between patients' desire for immediate post-diagnosis support and ECLOs' experience highlighting the need for ongoing support throughout the patient journey necessitates a holistic approach to intervention strategies. The discrepancy between the patients and ECLOs perspective versus the optometrists' viewpoint highlights a key issue that requires further investigation; while the patients and ECLOs view mental health support as crucial and necessary, optometrists seem to feel ill-equipped and unsure how best to refer patients to such support services, which points to a significant training gap that requires attention.

This study reveals a significant unmet need for mental health support services within the UK eye care pathway. The lack of proactive support and signposting, particularly at the point of diagnosis, is a major concern that negatively affects patient quality of life. Referring optometrists require training to effectively identify patients' needs and direct them to appropriate resources. Further large-scale research is necessary to evaluate the effectiveness of interventional studies aiming to improve mental health support provision and signposting, ultimately ensuring the well-being of patients throughout their sight loss journey.

This study is limited by its qualitative design and relatively small sample size, restricting the generalizability of the findings. The purposive sampling may have introduced bias. Further research with larger samples and quantitative measures is needed to confirm these findings and assess the effectiveness of different intervention strategies.