In this study we investigated the impact of VIxMD on daily functioning. We focussed on autism spectrum disorder, antisocial personality disorder, borderline personality disorder, dependent personality disorder, obsessive-compulsive disorder and psychotic disorders. Experts who work with this severely physically and mentally disabled target group, describe a frail and vulnerable population that needs tailored support from experienced professionals.
People with VI frequently experience anxiety, depression (7) and fatigue (30), especially those who have difficulty adapting to their VI (31, 32). If these people also have a comorbid MD, they are even more likely to be suffering from these psychopathological symptoms, which are inherent to their MD diagnosis as well (19). Experts especially associate borderline personality disorder, obsessive compulsive disorder and psychotic disorders with anxiety and depression in this population, which is in line with current literature (33-35). Moreover, experts indicate that for clients with obsessive compulsive disorder and VI, daily tasks and coherent anxiety may often lead to extreme (mental) fatigue, which is supported by the literature (30, 36).
Healthy living is very difficult for people with VIxMD. Experts indicate that the physical health of clients is often low due to neglect of self-care, self-medication, alcohol and drug abuse, which is confirmed by a study by Najt et al., 2011. (37). Moreover, sleep disturbances and deregulation of a person’s circadian rhythm are prevalent in people with VI, especially in those with a loss of light perception (38). Comorbid MDs (especially psychotic disorders according to experts) can seriously aggravate the sleep–wake cycle with a major impact on people’s physical and mental health (39).
Socially, people with VIxMD often have difficulty trusting others while they are dependent on them for many activities in daily life. In addition, the VI affects communication that is critical for social interaction, such as face recognition and the ability to distinguish facial expressions (40). Communication challenges and other aspects of life with VI can threaten social participation, thereby possibly isolating the person, negatively affecting their health and reducing their degree of engagement with society (6). Comorbid MDs may have a cumulative impact on this social withdrawal. Especially visually impaired people with autism spectrum disorder, antisocial personality disorder and dependent personality disorder experience extreme difficulty in social interactions and relationships (19). Moreover, people need to be extra resilient with regard to social stigmatization (i.e. prejudice and discrimination) concerning their VI and MD, which may cause feelings of shame, hopelessness and isolation (41).
Participation in (voluntary) work and learning activities are extremely challenging for people with VIxMD, due to the tremendous obstacles they face. Of the working-age population with VI, only one in three persons has a paid job, and they often experience high levels of stress, fatigue and dissatisfaction (42). The VI requires (complex) knowledge in order to function on a basic level. Additional MDs complicate this due to reduced social skills and increased risks of mental and cognitive impairment (43). An appropriate workplace environment seems essential, in which clients receive similar levels of support as they do at home.
Due to the comorbidity of physical and mental disabilities, experts indicate that it is often difficult to properly diagnose the MD that people are suffering from. Moreover, people who have one MD are likely to meet criteria for additional MDs at rates far exceeding what would be expected based on prevalence estimates (44). Therefore, experts suggest making use of observational diagnostics by also taking transdiagnostic factors into account. Examples of such transdiagnostic factors in this population are anxiety, depression, mental fatigue and sleep disturbances, which can be triggered by the VI but may also indicate an underlying MD. More research is needed that build further on these suggestions to be able to offer tailored diagnostic approaches.
Experts recommend using evidence-based psychological treatment options tailored to people with VI to reduce anxiety, depression and fatigue in this population, such as self-management programmes, behavioural activation or stepped-care (45, 46). However, according to the experts this should be offered based on an intermittent (or discontinuous) approach, during which the active interventions are only offered at times that a client is stable and able to follow the intervention. Also, the cognitive abilities of clients to follow these interventions should be taken into account. Other options that may be more suited to some clients’ needs and abilities are mentalization based therapy (47) or mindfulness-based stress reduction (48). Still, experts indicate that much more research is needed on tailored support and treatment options for this fragile population.
In addition, experts recommend multidisciplinary care in which e.g. low vision service providers, general practitioners, addiction care workers and mental healthcare specialists work together to offer tailored support with a focus on both the VI and MD. Currently, experts experience a lack of such collaborations while individual professionals lack specific knowledge on either the VI or MD (26). A stable treatment team should be appointed offering comprehensive multidisciplinary care that addresses the client’s health and other needs. Such collaborations have proven to be very effective in clients with chronic diseases and/or complex care needs (49). During treatment, experts stress the importance of building trust, showing patience and empathy, increasing the clients’ sense of mastery or control over their lives by stimulating empowerment, involving the informal network (e.g. family, friends, roommates, colleagues) and building on positive experiences.
Strengths and limitations
Several experts with many years of experience in working with the target population gave their professional opinion on the impact of VIxMD on daily functioning, best-practice methods and strategies to optimize care. The explorative qualitative Delphi design allowed for in-depth information on this fragile population and motivates follow-up research. However, we did not incorporate the perspective of clients themselves and included only six mental health conditions based on the knowledge gap experienced by experts and client representatives concerning these specific MDs. Moreover, most experts worked in one of the three (collaborating) organizations for people with VI, so there was no control group of experts who use different approaches. Future studies may focus on examining clients’ perspectives and incorporating additional MDs that can be comorbid with VI, such as major depressive disorder, anxiety disorders (7) and post-traumatic stress disorder (50).