Vision impairment¹ (VI) is a leading disability across the world. The existing figure in Australia is projected to rise by double with nearly 800,000 Australians living with VI by 2024 (Taylor, Keeffe, Vu et al., 2005). While some vision diseases are caused by biological vulnerabilities and come about early in life, the most common are those resulting from age-related eye diseases, the three main conditions being age-related macular degeneration, glaucoma and cataract (WHO, 2010). Two-thirds of people over the age of 50 will be affected and rates rise with years of life thereafter, making changes in vision ubiquitous in older age.
Functional and psychological impacts of VI
With vision being one of our most vital senses, wellbeing can be impaired due to vision loss. People experience limitations in daily functioning, reduced quality of life, and increased loss, isolation and dependency. VI can also make it more difficult for people to look after their physical health (e.g., identifying blood glucose levels). Over and above natural ageing, older people with VI experience accelerated loss of autonomy and can be confronted with immediate or progressive changes in performing household tasks, leisure activities, orientation to environment, driving and employment.
Vision-specific distress is a common experience in people with VI. Many people talk about fluctuating frustration, anger, sadness and alternating between despairing and hopeful thoughts even when irreversible vision changes have occurred. Many years of research also clearly shows a strong link between depression and vision problems (see infographic). Depression is an additional disability (on top of VI) impacting physical wellbeing and participation in medical and psychosocial treatments, thereby leading to poorer outcomes and raising health-care related costs. Those with depressive symptoms are less likely to access necessary vision rehabilitation services compared to those without depressive symptoms, reducing healthy adaptation.
People with VI are not the only ones affected negatively with carers also being more prone to depression, having been described as the ‘contagion effect’. Most importantly, depression left untreated in this population, with or without compromised care, can acutely persist and reduce the client’s own self-care. In fact, disability is complicated by depressive episodes, and depressive symptoms may be more likely to become chronic compared to healthy individuals with full ability.
Depression identification and access to psychological care
Depression often remains undetected in people with vision loss. Studies have found that depressive symptoms can be missed by general practitioners (GPs) and older persons with VI report shame and low disclosure regarding their own mental health. With reference to these findings, professionals from state-wide eye specialist services participated in focus groups demonstrating that they perceived depression to be common in their clients. Professionals showed motivation to learn how to assist with both identification and referral, yet were untrained to address this need. The major barriers were the lack of understanding about how to assess for depressive symptoms and having a clear referral pathway for access to psychological services.
While there are various evidence-based interventions for depression, these are most effective when implemented early, yet identification of depression and receipt of psychological support by people with vision loss is still uncommon.
Best-practice international guidelines
International guidelines recommend that depression screening and management be implemented in healthcare settings for clients at risk for depression. The Clinical Guidelines for Managing Depression (2009) were developed by the National Institute of Clinical Excellence (NICE), and two sets issued by the US Preventive Services Task Force (USPSTF) were published in the Annals of Internal Medicine. The USPSTF guidelines emphasised the substantial client benefits if implemented.
Despite these guidelines, there have been no tertiary implemented screening programs to detect depression in people with VI, and therefore people are unreasonably suffering with heightened distress that could be identified and managed. Poor psychological outcomes for people with VI are preventable, and a chief tool for prevention is the development and implementation of a depression screening and referral program.
One of the factors preventing the implementation of programs targeting groups such as those with VI is ineffective allocation of funds. For instance, globally, 67 per cent of funds allocated to mental health are directed at hospital services despite some being linked to poor outcomes and human rights violations (WHO, 2014). The World Health Organization (WHO) indicates that directing funds toward a range of community-based services would allow access to better and more cost-effective care for many more people.
Exploring international recommendations
In 2014, the WHO called for governments to strengthen and promote mental health strategies stating that “There is no health without mental health!”
The WHO Action Plan proposes that there be clear measures taken by governments that lead to improvements in the provision of good-quality mental health care in both government
and non-government sectors that promote broader health benefits. Recommendations include strategies such as:
- including mental health in broader health policies/strategies including those related to general health care and disability
- expanding evidence-based mental health treatments in health services and including them in programs of care based on cost-effectiveness and feasibility
- improving access for people with or at risk of mental health to welfare services and opportunities for education/employment.
Innovative psychological support in vision rehabilitation settings
Our programs have aimed to overcome the barriers to identification and management of depression in VI. We developed a national integration of depression screening in vision rehabilitation services and set down referral procedures, however these processes still need to be implemented more broadly across chronic health areas and disability.
We focused on training vision rehabilitation professionals to use the Patient Health Questionnaire (PHQ-2) to assess for depressive symptoms. Professionals were then trained to provide a referral to the GP indicating the client’s depression score for further follow-up for those who were screened to have symptoms above the cut-off. The integration identified a high prevalence of depressive symptoms (37%) and clients overwhelmingly (85%) believed the program was a ‘good idea.’ Clients who were referred for GP care (primarily pharmacological treatment) showed significantly reduced depressive symptoms over six months.
While depression screening is a necessary first step and still needs to be implemented more widely, it alone is not likely to be sufficient. Systematic reviews of depression screening and referral recommend that psychological support services be integrated into health care services to improve uptake and outcomes for clients. Therefore, we focused on developing low-intensity programs within vision rehabilitation services as a first step, alongside a GP referral, prior to more assertive specialised mental health support. This stepped-care approach was based on the understanding that there is a shortage of psychologists trained to work effectively with people with VI and older persons with complex comorbidities, and there were no integrated services within vision rehabilitation or eye-care specialist services to fill this gap.
Problem-solving treatment
We conducted a randomised controlled trial of problem-solving treatment (PST) integrated into Vision Australia services (the largest provider of low vision services across Australia). Vision rehabilitation professionals were trained to deliver the program. This was in reference to the NICE guidelines recommending the integration of early intervention programs for sub-threshold depression into rehabilitation programs based on cognitive behaviour therapy and incorporating problem-solving.
PST is a brief (4 to 8 session) common-sense approach to assist with functional adjustment, resilience building and generalised wellbeing. It is practical to apply, easily learned by professional and client, and has high client acceptance and satisfaction rates. It promotes awareness of challenges in life that need attention, healthy routines, behavioural activation, acceptance of areas that are not under the client’s direct control, and reduced avoidance.
Each session works through the seven steps (see infographic) with a current problem and the client begins to take more of a guiding role in the sessions as they start to master the process.
The positive results of this trial are being published this year. From this trial, Vision Australia has taken up PST for its national employment services for young adults (15 to 25 years) with VI, not engaged in educational programs or seeking employment. This will meet the needs of more than 100 people with VI and develop the skills of 20 vision rehabilitation professionals. Effectiveness of the model in employment has the potential to impact many people throughout Australia if it was to be taken up more broadly by the Australia Government.
Systematic reviews of depression screening and referral recommend that psychological support services be integrated into health care services to improve uptake and outcomes for clients”
Low-intensity support
From the PST trial, we identified factors that would help build more comprehensive treatment. From other research, we also know that people with VI who have depression are less likely to access vision rehabilitation services (where we integrated PST) as compared to those without depression. Therefore, we wanted to provide another avenue for support.
The PST trial enabled us to identify important prognostic factors to depression in VI, these being low acceptance of vision loss and greater helplessness, which impact negatively on problem focused coping self-efficacy. Therefore, we developed a six-week acceptance-focused guided self-help program. The program was designed to be accessible in large print and audio. Guidance for clients was provided by a clinical psychologist who met weekly with clients. Clients then independently completed the weekly modules in between sessions.
The program aimed to reduce helplessness, increase acceptance and improve confidence in coping. Evidence regarding acceptance and commitment therapy (ACT) suggests that emotional suffering would likely decrease along with functional impairment, and quality-of-life would improve. Once individuals have been able to re-appraise their VI, they may be far more likely to successfully implement other vision rehabilitation strategies (e.g., occupational therapy).
To our knowledge, there is no evidence of an acceptance-focused intervention being piloted in VI, yet there is vast evidence to support the effectiveness of ACT in other chronic health areas. The program aimed to increase psychological flexibility through: understanding emotional wellbeing in VI, being present, doing what matters, opening up effective communication, and wellness planning. We chose to combine self-help with guidance based on evidence suggesting that guidance increases effectiveness and levels of completion and is more effective than pure self-help alone. The findings from this trial are under peer-review.
Possible advantages of the program are improved cost effectiveness and application on a large scale compared to intensive face-to-face delivery of mental health intervention, and the potential to reach those who are not engaged in treatment due to existing barriers.
Psychological care in the future
Disability and chronic health conditions are becoming increasingly problematic with our ageing population. Accessing low-intensity and simpler methods for psychological care is important to overcome the psychological, logistical and external barriers that prevent clients from receiving the support they need. Both PST and guided self-help models can have large scope for use within Australian healthcare and PST more broadly in employment. On a community level, education is important for those still holding stigmatising views leading to potential under-reporting of prevalence. The Independence and Participation Committee of Vision 2020: The Right to Sight, an initiative of the WHO and the International Agency for the Prevention of Blindness, is setting down referral guidelines to make education and referral for psychological support accessible at first diagnosis of VI. However, on the primary- and tertiary-care levels, educating health care professionals that are employed in general health and disability services is essential to broader translation of mental health services, and for detection and referral. This extends to psychologists who will inevitably be working more with individuals with age-related health changes, making this an important priority focus in our training programs. On a systemic level, advocating for people with VI and educating those at a higher level will enable funds to be directed more effectively in the future as recommended by the WHO.
The author can be contacted at: [email protected]