Lia van der Ham and project leader Hilde van der Aa did research on the relationship between posttraumatische stress stoornis and visual impairment.
Lia van der Ham
ZonMw Langdurige Zorg
Posttraumatic stress disorder
Why are we doing this study?
People with visual impairment have an increased physical and mental vulnerability. The visual impairment can lead to a reduction in mobility, reduced participation and increased stress, depression and anxiety symptoms. Also, people with visual impairment are often more vulnerable to a variety of risks and dangers that can lead to post-traumatic stress disorder (PTSD), for example accidents, getting lost or violations of autonomy. PTSD is a condition in which extreme stress and anxiety is experienced from a traumatic event. Coping with such an event can be more difficult for visually impaired people because visual impressions are often the most important way to orientate yourself in emergency situations, assess risks and get yourself to safety. Psychologists and social workers from departments within low vision care organizations who specialize in psychological/psychiatric problems (i.e. the Psychotherapy department of Bartiméus and the Robert Coppes Foundation) often encounter clients with trauma-related anxiety complaints (outside these departments this is often less recognized). These professionals indicate that standard protocols and guidelines for diagnosing and treating PTSD, which are currently followed, are often less suitable for people with visual impairment, which increases the professionals constraint to act. For example, diagnosing PTSD according to the DSM-V can be difficult because the stress and anxiety experienced may be related to the visual impairment rather than the trauma experienced, for example with regard to avoidance of certain places and situations, sleep disturbances and distancing oneself from others. In addition, written questionnaires to diagnose the condition are often not suitable for people with visual impairment. Moreover, standard treatments, such as in vivo exposure to the traumatic event, stress management and writing therapy are often not possible in people with severe visual impairment. This can also lead to problems outside low vision care institutions (such as mental health care or care for the elderly) when dealing with clients with visual impairment. Therefore, there is a strong need for an extensive exploration of suitable diagnostic and treatment methods for PTSD in people with visual impairment and thus an extensive exploration of the relationship between the visual impairment and PTSD. To the best of our knowledge, scientific evidence for the diagnosis and treatment of PTSD in visually impaired people is currently completely lacking.
What is the aim of this study?
The aim of this study was to investigate the relationship between PTSD and visual impairment and to identify appropriate strategies for the diagnosis and treatment of adults with PTSD and visual impairment. The purpose is twofold. The first part focuses on the relationship between PTSD and visual impairment. The second part focuses on providing guidelines for diagnosis and treatment for the specific target group.
How did we conduct this study?
The project involved a qualitative study, consisting of a literature review, interviews with people with PTSD and visual impairment, 3 focus group meetings with care providers and interviews with care providers. Below is a summary of the different parts:
- Literature search: A systematic literature search was performed to map existing literature on post-traumatic stress in people with visual impairment: 14 articles were identified.
- Interviews with people with PTSD and visual impairment: 18 semi-structured interviews were conducted with people with visual impairment and PTSD. Participants were recruited via the Robert Coppes Foundation, Bartiméus and the Eye Association (‘Oogvereniging’ in Dutch). During the interviews, traumatic experiences, complaints and assistance were discussed, with specific attention to the role of the visual impairment.
- Focus group meetings with healthcare providers: 3 focus group meetings were organized with care providers from the Robert Coppes Foundation and Royal Dutch Visio). There were 4 to 7 participants in each focus group. The focus groups discussed interim findings from the research (recognizability, additions, etc.) and the needs, experiences and knowledge regarding care for people with PTSD and visual impairment.
- Interviews with care providers: 14 interviews were conducted with care providers from Royal Dutch Visio and Bartiméus who have experience in the treatment of people with trauma/PTSD and visual impairment. During these interviews, considerations and points for attention in the treatment process were discussed in particular (e.g. whether or not to use treatment, choice of a treatment form, the treatment process).
During the entire project, the principles of Participatory Action Research were used as much as possible. This is a responsive research method in which clients and professionals actively contribute ideas and actions. In concrete terms, this took the form of a Community of Practice (CoP), which consisted of researchers, care providers and patient representatives.
Like others, someone who is visually impaired or blind can develop PTSD after experiencing a traumatic event. In many ways this is similar for people with visual impairment compared to others. However, there are a number of points where this could be different. This can be summarized in three points:
- Visual impairment can affect the likelihood that certain traumatic events will occur; people with visual impairment seem to have a greater chance of experiencing falls, traffic accidents and abuse.
- Visual impairment can ensure that an event is experienced as more stressful, because people are less able to see danger coming, it is more difficult to oversee situations and it is more difficult to respond adequately to a situation.
- Visual impairment can influence the severity and perception of the complaints; visual impairment can amplify certain complaints and make it more difficult to deal with the complaints.
There is tentative evidence that PTSD is as common or more common in visually impaired people as in people without vision loss. However, there is insufficient evidence to make conclusive statements about this. The diagnosis and treatment options for PTSD are broadly the same for people with visual impairment compared to people without vision loss. With a few adjustments, existing first-choice treatments such as Cognitive Behavioral Therapy and EMDR can be used effectively in people with visual impairment. This requires creativity and empathy from the practitioner and, of course, aligning with the client. In addition to therapeutic treatment, help can also be offered in the form of prevention, low-threshold help and self-help.
The project resulted in a large number of recommendations on: prevention, low-threshold help, self-help and diagnosis and treatment. Recommendations for prevention focus on e.g. practicing/preparing for dangerous situations, normalization of negative events and visual rehabilitation. Recommendations for low-threshold help relate e.g. to offering a daily structure and daily schedule, identifying and monitoring complaints and psycho-education. Tips for self-help by clients include finding suitable activities, writing, and relaxation exercises. The main points to consider during treatment for PTSD include:
- Accessibility of buildings, spaces and people
- Use of suitable working methods and materials
- Adaptation of forms of communication and behavior
- Attention to the relationship between negative experiences and visual impairment
- Paying attention to the difference between real fears and excessive fear
- The treatment time
In addition to the previous recommendations, overarching recommendations also arise from the project. Firstly, more attention is needed for seeking and finding help, for example by providing information (also on the basis of this project) about help for this combination of problems, increasing the findability of care providers with experience in this area and increasing awareness and knowledge about this topic among care providers. In regular mental health care in particular, there still seems to be gains in this area. Further research into help-seeking processes and the application of the knowledge collected in this project in mental health care is necessary to provide more tools for this. In addition, larger-scale research can be conducted to gain better insight into the occurrence of (different types of) negative events and PTSD in people with visual impairment (compared to the general population).
The collected knowledge was integrated into scientific articles, a learning module for care providers (e-learning and contact training) and various digital documents with general information, tips and points of interest for clients and care providers.
van der Ham, A. J., van der Aa, H. P. A., Verstraten, P., van Rens, G. H. M. B., & van Nispen, R. M. A. (2021). Experiences with traumatic events, consequences and care among people with visual impairment and post-traumatic stress disorder: a qualitative study from The Netherlands. BMJ Open, 11(2), e041469. https://doi.org/10.1136/bmjopen-2020-041469
van der Ham, A. J., van der Aa, H. P. A., Brunes, A., Heir, T., de Vries, R., van Rens, G. H. M. B., & van Nispen, R. M. A. (2021). The development of posttraumatic stress disorder in individuals with visual impairment: a systematic search and review. Ophthalmic & physiological optics : the journal of the British College of Ophthalmic Opticians (Optometrists), 41(2), 331-341. https://doi.org/10.1111/opo.12784