Ontwikkeling van een interventie voor het doelmatig behandelen van vermoeidheidsklachten van volwassenen met een visuele beperking. (WC2014-071)

Background

Starting date: 05/01/2015

Symptoms of fatigue are frequently reported by visually impaired clients and can seriously affect the capacity of clients to cope with everyday life, resulting in only partial participation in society. A definition of fatigue that captures its multidimensional nature is: “fatigue is an overwhelming sense of tiredness, lack of energy and a feeling of exhaustion, associated with impaired physical and/or cognitive functioning; which needs to be distinguished from symptoms of depression, which include a lack of self-esteem, sadness and despair or hopelessness”. Studies have shown that visually impaired clients score higher on symptoms of fatigue than a ‘representative’ control group. Clients acknowledge this problem and have prioritized rehabilitation goals regarding fatigue, by placing it in the top 5 of symptoms with the highest rehabilitation urgency [6]. Moreover, these symptoms did not decrease significantly after one year of rehabilitation. Consequences of fatigue mentioned by clients of the rehabilitation centres during focus groups for the development of the Participation and Activity Inventory (formerly named Dutch AI) included difficulty maintaining energy to endure daily activities (e.g. running errands, cooking), difficulty concentrating and processing/memorising information, crossing one’s personal boundaries regarding energy balance and requiring extra effort to perceive and process visual stimuli. Symptoms of fatigue can be related to psychosocial problems, as anxiety and depression are highly prevalent disorders in the population of visually impaired adults and both are associated with fatigue. In addition, the sleep cycle of blind and severely visually disabled persons can be insufficiently synchronized according to ‘light/dark’ cues, resulting in an irregular circadian rhythm and fatigue.

There are no evidence based interventions available aimed at treating symptoms of fatigue for the population of visually impaired adults. Studies with diabetes, cancer and rheumatoid arthritis patients have shown that fatigue can have a negative impact on psychological wellbeing, quality of life (QoL), employment and work related activities. Determinants of fatigue have not yet been studied for visually impaired adults, but they have been studied for other chronic conditions (e.g. hearing impairment, cancer, multiple sclerosis and chronic fatigue syndrome). Studies have shown that for adults with a hearing impairment, symptoms of fatigue are related to an increase in compensatory behaviour (e.g. visual awareness), attention, concentration and an increased effort to hear and understand the spoken word. For patients with Chronic Fatigue Syndrome (CFS) and Multiple Sclerosis (MS) behavioural, cognitive and affective factors appear to be involved in developing symptoms of fatigue. Cancer patients experience both physical and psychological distress before developing symptoms of fatigue (e.g. limitations in role functioning). Multidimensional rehabilitation programmes developed specifically for adults diagnosed with cancer, arthritis or MS, which included population specific determinants, succeeded in significantly reducing the fatigue symptoms. This indicates that an effective intervention for symptoms of fatigue requires a thorough analysis of predisposing factors and determinants for the specific patient population. Hence, this study aims to investigate the determinants of fatigue in visually impaired adults. Parallel to this study of the determinants, a client-specific intervention aimed to treat fatigue will be developed.