The aim of this study was to explore facilitators and barriers in the detection and discussion of depression and anxiety in adults with VI. Based on interviews with service users, this study uncovers several important facilitators and barriers regarding service users’ cognitions and skills, social support networks and the influence of healthcare providers. These factors are in accordance with the determinants of the I-Change model.
Service users acknowledge that depression and anxiety are highly prevalent in people with VI. However, they seem to encounter difficulties in acknowledging their own mental health problems and VI. This refusal to acknowledge VI may be part of someone’s grieving process and may aggravate feelings of depression and anxiety. People with VI can be recurrently confronted with their loss, because new situations and new problems keep redefining their loss (16), for instance not being able to see their newborn grandchild. This suggests that adults with VI need to adapt to and acknowledge, their VI repeatedly during their lives. Healthcare providers should be aware of these reoccurring confrontations with loss of vision that can cause mental health problems.
Being visually impaired may limit service users to open up about mental health problems, because of increased feelings of vulnerability and decreased trust in others. Previous studies confirm that adults with VI often experience difficulties in opening up about mental health problems and sometimes even deny psychological distress (17, 18). Many service users experience self-stigma on both VI and mental health problems, which may exacerbate these difficulties. Self-stigma may prevent them from seeking help and receiving treatment (19, 20). Self-stigma can potentially be reduced by providing psychoeducation (21). This emphasizes the importance of healthcare providers discussing mental health problems related to VI (e.g. “it is not surprising that you experience these symptoms, as many other adults with VI do”).
In addition, people with VI seem to experience difficulties in identifying their mental health problems. Some indicate this is due to limited knowledge about the impact of VI on mental health and treatment possibilities. Especially in this population lack of knowledge seems to be experienced as a barrier for help-seeking (5), since it is less often mentioned in the general population (22, 23). This may be caused by the limited abilities of people with VI to obtain processable information, which can lead to low health literacy (24, 25), i.e. the ability to “obtain, process and understand basic health-related information and services to make appropriate health decisions” (26). Health literacy seems an important facilitator in help-seeking for mental health problems (27). People with VI might face specific barriers in obtaining health-related information because it is inaccessible (e.g. posters in a waiting room or information on a website). This emphasizes the importance of using accessible and tailored ways of informing people with VI on mental health problems and treatment possibilities, e.g. during contacts with an experienced healthcare provider or via audio recordings on a website.
Another important reason for difficulty in identifying mental health problems may be a misattribution of symptoms. Some symptoms of depression and anxiety, such as loss of daily activities, poorer self-care and fatigue, are often seen in people with vision loss (28–30), but can also be symptoms of mental health problems as they are highly prevalent in this population. Informing service users about the high prevalence of mental health problems in people with VI in a timely manner is warranted.
An active problem solving coping strategy seemed to assist service users in being able to discuss symptoms with a healthcare provider. However, from the literature we know that especially service users with an avoidant coping style seem to experience mental health problems (31) and people with mental health problems seem to have more difficulty in using adaptive coping strategies (32). Therefore, these service users seem to be more dependent on others, i.e. informal and formal support systems, in being able to discuss mental health symptoms.
Service users often mentioned informal support helped them to recognize and discuss mental health problems. In adults with VI this support from loved ones seems to be even more important, because they often report a loss of control, low self-esteem and increased dependency on others for many daily activities (33–35). Informal support consists of instrumental support (e.g. assisting with tasks of daily living) and emotional support (e.g. affective support) (36). Strong informal emotional support is associated with help-seeking in mental health problems (37). However, adults with VI more often receive instrumental support than emotional support, and most often responsibilities for providing support lies with their family members (38). Service users experienced different levels of emotional support, that may be explained by adaptation to vision loss. Vision loss is associated with possible isolation from the family, changes in roles and responsibilities between family members, and burden within family members (39–41). Therefore, some social support networks might have focused on providing instrumental support or had limited resources to provide emotional support.
Healthcare providers could help service users to identify and discuss mental health problems. It seems important that healthcare providers understand the impact of VI on mental health, start a conversation about mental health and share knowledge about prevalence and symptoms of mental health problems. A previous study in women with VI confirms healthcare providers’ importance in service users achieving health literacy (24). However, healthcare providers often seem to focus on VI, which is consistent with previous studies (8). Service users also expressed the need of receiving information about the impact of VI on mental health and sometimes questioned the expertise (e.g. knowledge, skills and attitude) of healthcare providers. Nevertheless, only a quarter of ophthalmic and low vision service personnel provides education and information for suspected depression (10). In addition, they often report a lack of confidence in knowledge and skills as barriers to depression management in adults with VI (9, 10). These barriers may have limited healthcare providers in providing information about mental health and treatment options, but also in starting a conversation about depression or anxiety. A possible explanation for the lack of critical attitude might be that healthcare providers think service users are often reluctant to discuss mental health (8, 9). Therefore, there might be a mismatch between the service users’ needs and healthcare providers’ abilities, resulting in underrecognition of mental health problems.
Strengths and limitations
A first strength is that this study describes potential barriers and facilitators from the perspective of adults with VI. The qualitative design allows us to understand the actual experiences of this fragile population in discussing this highly prevalent problem. Second, the I-Change model turned out to be valuable to create a comprehensive interview guide. Third, a heterogeneous group of adults with VI from different gender, age groups and with various ophthalmic diagnosis and comorbidities was included to provide a broad picture of experienced barriers and facilitators.
Although common in qualitative interview studies, the results might lack generalizability and completeness. Despite heterogeneity of the participant group, the sample size was small, and lacked diversity in for instance cultural differences, cognitive abilities and (in)experience in discussing mental health problems. Another limitation is the retrospective design of the study, which can be affected by inaccuracy or incompleteness of recollection (42). Finally, service users differed in reflective abilities, and together with recall bias, this may have resulted in missing some information. Future (quantitative) studies might take into account these limitations.
An important implication for clinical practice is that healthcare providers should be aware of possible additional limitations service users experience in identifying and discussing mental health problems. In addition, they should understand their influence on service users’ acknowledgement of and willingness to discuss mental health issues. GPs’ knowledge on VI and overall healthcare providers’ knowledge on the impact of VI on mental health should be increased. Moreover, standard procedures could be introduced, with a screening instrument as a routine part of care. This might facilitate healthcare providers to start a conversation about the impact of VI on mental health. Finally, healthcare providers could actively provide information about depression and anxiety, in a way that is suitable for adults with VI (verbally, digitally or in Braille) to increase health literacy.