|
Treatment of sleep problems in children with visual impairments
Focus: Early intervention
Topic: Living skills
University of Nijmegen
Department of Special Education
Montessorilaan 3
P.O. Box 9104, 6500 HE Nijmegen
The Netherlands
Tel: + 31 24 3616047
Fax: +31 24 3616211
E-mail: m.vervloed@ped.kun.nl;
Sleep problems are frequently found in children and adults with blindness and visual impairment. In their longitudinal study Jan, Freeman and Scott (1977) found a prevalence of 20 per cent for problems in falling asleep in 85 blind children and only 5.9 per cent in a control group of 85 sighted peers. More recently, Tröster, Brambring and van der Burg (1996), Mindell and De Marco (1997) and Leger, Prevot, Philip, et al. (1999) found high prevalence rates of difficulties getting to sleep or staying asleep in children with visual impairment and blindness.
Initially, sleep problems in blind and visually impaired persons were thought to be the result of psychological factors, such as fear or anxiousness to loose attachment figures (Fraiberg, 1977) or of less exploration and less physical exercise by visually impaired and blind persons (Jan, Freeman, & Scott, 1977). In the latter case they would be less fatigued, and therefore needed less sleep. The most important reason for sleep problems, however, seems to be of endocrinological nature. In typically developing children the sleep-wake rhythm becomes in line with the 24-hour day-night cycle at approximately 12 months of age (Stores, 2001a), in children with blindness it sometimes does not. Circadian rhythms are entrained by factors termed "Zeitgebers" (Zeit = time, Geber = someone who gives). Zeitgebers synchronize our internal clocks with the environment, especially with the 24-hour (solar) period. Bright light is the strongest factor for entrainment of the internal clock. Light is passed through the retinohypothalamic tract (RHT) from the retina to the suprachiasmatic nucleus (SCN) of the hypothalamus. The SCN regulates secretion of the hormone melatonin by relaying light information to the pineal gland (Stores, 2001a; Lubkin, Beizai, & Sadun, 2002). Most blind people without light perception are not able to activate their RHT pathway, which leads to desynchronisation of the SCN and its target tissues, such as the pineal gland (see e.g. Lubkin, Beizai, & Sadun, 2002).
Nowadays, oral administration of melatonin seems to be the medication of first choice in sleep-wake cycle disorders in visually impaired children (Jan, Espezel, & Appleton, 1994; Espezel, Jan, Donnell, & Milner, 1996; Palm, Blennow, & Wetterberg, 1997). However, long term effects of oral administration of melatonin are poorly understood and not all children profit from melatonin administration, perhaps especially when behavior problems are prominent (Stores, 2001b). Other forms of treatment for visually impaired children, beside oral administration of melatonin, depend on the nature of the sleep problem. Treatment might include chronotherapy for sleep-wake cycle disorders, such as strict daily schedules (see for example Mindell, Goldberg, & Fry, 1996) or bright light therapy, which has been successful in some blind adults (see Czeisler, Shanahan, Klerman, et al., 1995). According to Stores (2001b) in children the appropriate treatment is behavioral intervention whenever the problem arises from inappropriate bedtime parenting practices and / or behavioral problems, such as talking, screaming and crying. The present study intends to illustrate a behavioral treatment of sleep problems in a girl with visual impairment as a result of Leber's Amaurosis Congenita.
The participant was a 4;6 year old girl. Her visual acuity was 5/100 (1/20). At the age of 20 months medication was prescribed because of sleep problems. The sleep medication proved to be of no use. Parents prepared her to go to bed at approximately 7.00 p.m. everyday. Bedtime routines consisted of drinking, putting on night robe, being read a story and listening to music. At 7.40 p.m. mother usually left the bedroom, while the music was still playing. When the music stopped the girl typically started to cry, asking her mother to play the music again. This repeated itself until she fell asleep at about 9.00 p.m.. According to the parents she slept restlessly. At night she often awoke at about midnight. Waking was accompanied by crying and often leaving the bed. She was often sweating and frightened at night and had nightmares frequently.
Baseline measurement took place for 26 days. The intervention, consisting of adjustments in bedtime routines and extinction of parental attention, was in effect for 29 days. Three months after the end of the intervention period follow up data were collected for 12 days. Between the intervention and follow up period the family moved to another city. This might have influenced follow up data. Functional assessment of sleep problems was performed during baseline measurements. Information was obtained by interviewing the parents and by a sleep diary. Based on the results of the functional analysis it was hypothesized that the sleep problem of the girl was maintained by parental attention. When the girl started to call for her parents or started to cry there was almost always a parental reaction.
Graduated extinction of parental attention was recommended for maintaining sleep in an AB design with follow up. Because the parents complained about nighttime disruptions and not about problems in falling asleep, treatment only focussed on these nightly disruptions. Parents were instructed to react shortly and firmly at nocturnal awakenings and crying. After comforting the girl they had to leave the bedroom. When the girl kept on calling or crying, the parents were allowed to re-enter the room after five minutes. Again, the girl was soothed and spoken to in a firm and decisive way. This procedure repeated itself until the child quieted down and fell asleep. After a night when just one parental visit to the child’s bedroom was necessary, the extinction period of no parental attention was increased with five minutes. The girl was allowed only to sleep in her own bed, without the parents. This stimulus control procedure is thought to create the association that it is safe and comfortable to sleep in your own bed without parental attendance or parental company. The bedtime routines were restricted to last only 30 minutes. Physical games as part of the bedtime routines were strongly dissuaded.
For the girl Figure 1 depicts the number of minutes awake during the night caused by difficulties maintaining sleep. During baseline the girl was awake for 25.0 minutes (range 0–150 min.), during the intervention 5.0 minutes (range 0–63 min.) and during follow up 0.0 minutes. The sleep diary of the girl revealed a decrease of parental attention during treatment. During treatment and follow up the parents noticed the girl to be more obedient and cheerful.
Behavioral treatment, consisting of parent support and the use of a graduated extinction procedure were effective in treating the sleep problems in a girl four years of age. The baseline consisted of a large number of sessions. This was done on purpose to study possible delayed sleep phase syndrome or a free-running sleep rhythm, which is quite common in people with visual impairments. However, although the sleep behavior was quite variable, no recurrent periods of good and bad nights were found. A shift in the time the girl fell asleep was found neither. This strengthened the idea that parental attitudes and behavior were in control of the deviant sleep behavior and that the girl did not suffer from delayed sleep phase syndrome.
In general, we would like to recommend starting interventions of sleep problems in children with visual impairments with conventional behavioral treatment and behavioral modification techniques. First of all, because children with visual impairments do show a lot of the developmental disturbances that typically developing children also show, which in turn can easily lead to inappropriate parental practices. Treatment of these inappropriate parental practices, by giving pedagogical advise or by behavioral modification techniques, has been successful both in typically developing children as well as in children with varying developmental difficulties. Secondly, because chronotherapy, bright light therapy and oral administration of melatonin failed to treat all visually impaired persons with sleep problems effectively. Moreover, effect studies on bright light therapy are only published on studies with adults, not with children. A drawback of chronotherapy is that it is hard for parents to implement, because the chronotherapy easily interferes with their own sleep. With regard to melatonin administration, studies on dose and timing of melatonin administration are just beginning to appear. Therefore, we agree with Stores (2001b) that, because of insignificant knowledge about dosage, timing and long term effects, melatonin should only be used for short periods of time in children where behavioral factors are obviously not the cause of the sleep problem and where other forms of treatment have failed.
An interesting side effect in the case of the girl is that her parents reported her to be more obedient and cheerful during treatment than during the baseline period. The possible effects that sleep and sleep problems might have on cognition, attention and behavior make it worthwhile to treat sleep problems, especially in children with visual impairments, given the high prevalence rate of sleep problems in this population.
References
Czeisler, C. A., Shanahan, T. L., Klerman, E. B., Martens, H., Brotman, D. J., Emens, J. S., Klein, T., & Rizzo, J. F. 3rd (1995). Suppression of melatonin secretion in some blind patients by exposure to bright light. New England Journal of Medicine, 322, 1, 6-11.
Espezel, H., Jan, J. E., O'Donnell, M. E. & Milner, R. (1996). The use of melatonin to treat sleep-wake-rhythm disorders in children who are visually impaired. Journal of Visual Impairment & Blindness, 90, 43-50.
Fraiberg, S. (1977). Insights from the blind. New York: Basic Books.
Jan, J. E., Espezel, H., & Appleton, R. E (1994). The treatment of sleep disorders with melatonin. Developmental Medicine and Child Neurology, 36, 97, 97-107.
Jan, J. E., Freeman, R. D., & Scott, E. P. (1977). Visual Impairment in children and adolescents. New York: Grune & Stratton.
Leger, D., Prevot, E., Philip, P., Yence, C., Labaye, N., Paillard, M., & Guilleminault, C. (1999). Sleep disorders in children with blindness. Annals of Neurology, 46, 4, 648-651.
Lubkin, V., Beizai, P., & Sadun, A. A. (2002). The eye as metronome of the body. Survey of Ophthalmology, 47, 1, 17-26.
Mindell, J. A., Goldberg, R., & Fry, J. M. (1996). Treatment of a circadian rhythm disturbance in a 2-year-old blind child. Journal of Visual Impairment & Blindness, 90, 162-166.
Mindell, J. A., & De Marco, C. M. (1997). Sleep problems of young blind children. Journal of Visual Impairment & Blindness, 91, 33-39.
Palm, L., Blennow, G., & Wetterberg, L. (1997). Long-term melatonine treatment in blind children and young adults with circadian sleep-wake disturbances. Developmental Medicine & Child Neurology, 39, 319-325.
Stores, G. (2001a). Normal sleep including developmental aspects. In G. Stores and L. Wiggs (Eds.) Sleep disturbance in children and adolescents with disorders of development: its significance and management (pp. 10-14). London: Mac Keith Press.
Stores, G. (2001b). Visual impairment and associated sleep abnormalities. In G. Stores and L. Wiggs (Eds.) Sleep disturbance in children and adolescents with disorders of development: its significance and management (pp. 120-125). London: Mac Keith Press.
Tröster, H., Brambring, M., & Van der Burg, J. (1996). Daily routines and sleep disorders in visually impaired children. Early Child Development and Care, 119, 1-14.
|
Please send comments or questions to webmaster@icevi.org.