Psychological status and quality of life of caregivers of ...

Psychological status and quality of life of caregivers of children with dysphagic cerebral palsy 1.

Ebru Umay # ebruumay at gmail dot com Ministry of Health Ankara Diskapi Yildirim Beyazit Training and Research Hospital, Physical Medicine and Rehabilitation Clinic, Ankara, Turkey 2. Ece Unlu Ministry of Health Ankara Diskapi Yildirim Beyazit Training and Research Hospital, Physical Medicine and Rehabilitation Clini c, Ankara, Turkey 3. Aytul Cakcı Ministry of Health Ankara Diskapi Yildirim Beyazit Training and Research Hospital, Physical Medicine and Rehabilitation Clini c, Ankara, Turkey # : corresponding author DOI http://dx.doi.org/10.13070/rs.en.1.768 Date 2014-05-08 Cite as Research 2014;1:768 License CC-BY

Abstract Introduction: We aimed to evaluate the presence of dysphagia in children with cerebral palsy (CP) and the effects of dysphagia symptoms on the psychological status and quality of life of caregivers. Materials and methods: Sixty-four children with CP were included. Dysphagia symptoms and complications were evaluated via a questionnaire. The patients’ lunch-time feeding was observed for detecting/confirming any dysphagia findings. To assess the psychological status and quality of life of caregivers, Beck Anxiety and Depression scales and Nottingham Health Profile subscales were used. The children were divided into two groups according to the “presence” or “absence” of the most commonly observed dysphagia finding (poor tongue movement). Anxiety, depression and quality of life levels were compared between the groups. Results: The most commonly reported symptoms were difficulty in eating large and solid food. The most common examination finding was poor tongue movement. Significantly higher scores were found in caregivers of children with poor tongue movement than in caregivers of children with normal tongue movement in terms of energy, emotional reaction, social isolation, physical abilities, and general distress levels. There was no significant difference between the groups in terms of anxiety and depression levels and sleep status. Conclusion: Identification of dysphagia is important for the prevention of complications and for improvement in the general health of both children and caregivers. Introduction Cerebral palsy (CP) is a permanent, non-progressive disease characterized by disorders of movement and posture caused by brain damage that occurs during the early stages (prenatal, natal or postnatal) of development [1]. Recently, many premature infants are kept alive due to improvement in neonatal care, resulting in an increase in the incidence of CP [2]. Because their 30-year life expectancy is 80%, these children are important in terms of socioeconomic impact [3]. The gross and fine motor functioning and organization problems in CP can lead to difficulties in walking, feeding and swallowing, and articulation of speech, and secondary problems such as growth retardation and failure to thrive [4). In has been reported in the literature that the most important factors determining life expectancy in CP are lack of mobility and feeding [5). Swallowing is a sensorimotor act that occurs with the participation of multi-level structures in the central nervous system from the cerebral cortex to the bulbi, which allows the passage of food from the mouth into the stomach [6]. Dysphagia is defined as abnormal swallowing due to impaired coordination or weakness affecting the swallowing biomechanics [7]. Dysphagia in children with CP often occurs in parallel with many other disorders or with delayed development, such as in cognitive, fine and gross motor skills. Dysphagia has been reported in 58-86% of children with moderate and severe CP [4] [8] [9]. Dysphagia may result in several complications, including dehydration, malnutrition, airway obstruction, aspiration pneumonia, and death [10]. Moreover, dysphagia often has been reported to be related to reduced weight and height/growth retardation [8] [9] [10] [11] [4]. Dysphagia has many consequences for both children and their caregivers, such as prolonged mealtime, neglect of opportunities for positive interaction, enjoyment and communication, and the caregiver’s feeling of inadequacy and guilt [4] [12]. To our knowledge, there are no previous reports in the literature of a comparison between caregivers of children with CP, with and without dysphagia, in terms of differences in psychological status and quality of life. However, studies have shown that caregivers of children with CP have more depression and anxiety than caregivers of healthy children and also that there is a decline in their quality of life [13] [14]. We think that the presence of dysphagia in children with CP of all levels is higher than reported in the literature. Additionally, we think that the presence of dysphagia in a child with CP negatively affects the psychological status and quality of life of caregivers. Therefore, we aimed to evaluate dysphagia in children with CP who admitted to our clinic for problems other than dysphagia and who had not received any treatment, such as medical or physical therapy, for dysphagia. Further, we aimed to evaluate any relation between dysphagia symptoms and the psychological status and quality of life among caregivers of children with mild-moderate-severe CP. Materials and Methods

Sixty-four children with CP who admitted to our clinic and were hospitalized for reasons other than feeding problems, such as spasticity treatment and/or balance-coordination education, were included in our study. Children who were given medical and/or physical therapy because of a previously known feeding problem and/or gastrointestinal disorders and who used drugs for epilepsy or spasticity were excluded from this study. At the onset of the study, the caregivers were informed regarding the nature of the study and their written approval was obtained. Demographic characteristics of children, including age, gender, height (cm) and weight (kg) were recorded. Body mass index (BMI) was calculated by using height and weight. Prenatal, natal and postnatal risk factors (prematurity, multiple pregnancy, birth trauma, lung infection in the first 3 months, metabolic disease) and maternal causes (advanced maternal age, history of infection during pregnancy. blood incompatibility, parental consanguinity) were recorded. Caregivers were questioned regarding the following problems associated with CP: mental retardation, seizures, hearing and visual impairments, dental problems, and speech problems such as aphasia, dysphasia, dysarthria, or speech retardation. Mental retardation and hearing and visual disorders were evaluated as “presence” or “absence” according to their being defined by a child psychiatrist, otorhinolaryngologist and ophthalmologist. CP types were identified as hemi, di- and tetraparesis. Motor development was graded using the Gross Motor Function Measure (GMFM). The assessment of any feeding problems among the children was done via questionnaire. Feeding status questionnaires including the questions: “Do you sometimes/always consider eating and/or drinking as a problem in your child?”, “Do you sometimes/always think your child enjoys eating and/or drinking regardless of feeding problems?” and “How long does an average mealtime last” were applied to the caregivers. Answers were evaluated as “yes” or “no” for the first two questions, and mealtime duration was evaluated as “more than 15 minutes” and “more than 45 minutes”. Caregivers of children were also questioned regarding the presence of dysphagia and its complications: History of at least three lung infections treated at home and/or in hospital; oral phase symptoms including drooling, poor tongue and lip movements, difficulties in biting, chewing and eating small and large foods, difficulties in drinking liquid food and eating puree and hard solid textures, accumulation of food in the mouth, and repeated swallowing/head tilt; and pharyngoesophageal phase symptoms including oral and/or nose regurgitation, presence of decreased alertness and fatigue with feeding, coughing/choking and gagging/vomiting with feeding, wet voice and dysphonia with drinking liquid, chest pain after feeding, and presence of gastroesophageal reflux findings [15], such as food refusal, regurgitation, abdominal pain, chronic constipation or diarrhea, excessive hiccup, burping, and vomiting. These symptoms were evaluated as “presence” or “absence”. To assess oropharyngeal motor function associated with swallowing, some problems that may affect the swallowing function including postural stability, facial asymmetry, jaw deviation, and presence of high palatal arch were recorded. Postural stability was evaluated according to the presence or not of symmetrical mid-line, neutral and stable head flexion, stable shoulder, elongated neck and trunk, pelvis in neutral position with 90° flexion of hips, and slightly dorsi-flexed feet. In the evaluation of swallowing, the presence of suction, velum, gag and cough reflexes, and presence or not of excessive gag reflex were examined. Lip and tongue movements were examined in cooperative patients using a tongue depressor, and in non-cooperative patients by observation during feeding. Following this physical examination, the lunch-time feeding of the patient for the detection/confirmation of dysphagia findings was observed due to its being the maximum period of alertness of the patients. Water (10 cc) as liquid, yogurt (10 cc) as semi-solid and biscuit (size of a matchbox) as solid food were used. Arterial O2 saturation was assessed using the second finger of the dominant hand by pulse oximetry during feeding with liquid food. During the feeding, the patients were observed for: biting and chewing reflexes, prolonged/excessive biting reflex, lip and tongue movements, rapid tooth tapping, difficulties in biting, chewing, drinking liquid, or eating semi-solid and solid foods, swallowing reflex, drooling, laryngeal elevation, and coughing/choking and gagging/vomiting with feeding. In addition, the presence or not of more than a 2% decrease in O2 saturation as measured by pulse oximetry was recorded. The independence of patients during feeding was evaluated as “fully dependent”, “partially dependent”, “supervisor required”, and “fully independent”. Modifications such as change of posture or the use of straw, baby bottle and thick-handled spoon were recorded. To evaluate the presence of malnutrition, arm circumference (cm) was measured. Arm circumference over the point midway between the olecranon and the acromion was measured. Malnutrition was defined as 12 cm and below [16]. Percentile levels corresponding to the value of weight for age, height for age and BMI were recorded. Study results of Neyzi et al. were used as reference values [17]. To assess the psychological status and quality of life of caregivers, Beck Anxiety [18] and Depression [19] scales and Nottingham Health Profile (NHP) [20] subscales as energy, emotional reaction, sleep, social isolation, physical abilities, and general distress levels were used. One point for anxiety and 10 points for depression were considered as the boundaries for psychological status [18] [19]. To evaluate whether or not effects of dysphagia on the psychological status and quality of life of caregivers, children were divided into two groups according to the “presence” (Group 1) or “absence” (Group 2) of the most commonly observed dysphagia finding (during the observation). Anxiety, depression and parameters of quality of life levels were compared between the two groups. Statistical analysis was performed using the Statistical Package for Social Sciences 11.5 (SPSS, Inc.; Chicago, IL, USA) version for Windows. Normality of the continuous variables was assessed by the Shapiro-Wilk test. Descriptive statistics were expressed using chi-square tests as mean±standard deviation for continuous variables

and as number of observations (%) for nominal variables. As none of the continuous variables was normally distributed, the Mann-Whitney U test was used for the comparison of non-normally distributed continuous variables. The results were considered as significant for p2%)

23 (35.9)

Table 5. Distribution of oropharyngeal motor function associated with swallowing and examination findings.

Postural instability was present in 19 (29.7%) children. The most common examination findings were poor tongue movement (93.8%) and difficulty in eating solid food (82.8%). Twelve (18.8%) children were fully dependent for feeding, 10 (15.5%) were partially dependent, 30 (46.9%) required only a supervisor, and 12 (18.8%) were fully independent. Postural change in 19 (29.7%), use of straw and baby bottle in 6 (9.4%) and use of thick-handled spoon in 3 (4.7%) children were noted as the feeding modifications. Arm circumference measured to detect the presence of malnutrition was found as 11.50 (12.33±2.24) cm. Sixtyone (95.3%) children in terms of weight and 59 (91.2%) in terms of height were between 3rd-10th percentile. The remaining children were at the 25th percentile. Also, 60 (93.8%) children in terms of BMI were at the 10th percentile. While anxiety score of caregivers was 13.00 (18.18±12.07), depression score was 13.00 (15.79±9.01). Energy level was 66.70 (57.82±30.39), emotional reaction level was 61.13 (56.35±22.77), sleep level was 31.11 (37.53±29.68), social isolation level was 50.00 (39.37±21.26), physical abilities level was 25.00 (25.31±15.11), and general distress level was 43.05 (50.59±26.83).

Group 1 (n=60) mean±SD Group 2 (n=4) mean±SD

p

Anxiety score

13.10 (17.95±12.10)

14.00 (18.29±6.09)

0.942

Depression score

13.00 (15.95±9.66)

13.00 (17.09±8.49)

0.109

Energy level

33.33 (45.00±37.89)

66.77 (63.64±30.16)

0.037

Emotional reaction level 38.87 (41.11±33.84)

66.68 (63.27±29.11)

0.017

Sleep level

20.10 (36.00±22.83)

40.10 (38.23±28.52)

0.795

Social isolation level

8.30 (16.11±8.12)

58.08 (50.12±26.41)

0.001

Physical abilities level

12.00 (17.25±8.14)

25.00 (28.97±16.88)

0.049

General distress level

35.41 (32.59±26.17)

58.33 (58.77±23.08)

0.001

Table 6. Psychological status and quality of life of caregivers according to the presence (Group 1) or absence (Group 2) of poor tongue movements in the children.

The comparison of the results of the psychological status and quality of life of caregivers according to the children having poor or normal tongue movements is presented in Table 6. Significantly higher scores were found among

caregivers of children with poor tongue movements versus those of children with normal tongue movements in terms of energy, emotional reaction, social isolation, physical abilities, and general distress levels. There was no significant difference between the groups in terms of the anxiety and depression levels or sleep status. Discussion Feeding problems in children with CP depend on the interaction of many factors, such as dependence for feeding, speech problems, neurological/motor development retardation, oral motor and swallowing dysfunction, postural instability, and the effect of drugs used for spasticity, neurogenic bladder and seizures on gastrointestinal tract motility and appetite [21] [22]. In the literature, oral motor and swallowing dysfunction have been shown as the main causes of feeding problems [23] [24]. The act of swallowing is a complex process and requires the coordination of nerves, brainstem, cerebral cortex, and muscles of the mouth, pharynx and esophagus. Any abnormalities affecting these, like CP, may have a negative impact on the child’s ability to swallow [25]. Studies in the literature have reported that caregiver interviews and medical records are important for identifying dysphagia [7]. A previous meta-analysis reported the following: presence of dysphagia symptoms such as history of suction and switch to additional food, drooling, difficulties in chewing and swallowing, dropping food from the mouth, eating only small amounts of food, food refusal, mealtime more than 45 minutes, decreased alertness and presence of fatigue with feeding, findings of respiratory distress during feeding including breathing with effort and noisy breathing, and findings of aspiration including gagging, coughing and choking with feeding, all of moderate degree according to expert opinion [7]. In addition to dysphagia symptoms, investigation of repeated lung infections has been reported to be of importance. Survey studies, especially in children with tetraparesis, have shown an increased risk of death due to feeding problems that affected the respiratory system, and 60% of patients were reported to have died due to aspiration [9] [26]. While information received from caregivers has been reported to be important in some studies, other studies that compared information received from caregivers with mealtime observations and/or examination findings reported conflicting results. One study in the literature [24] questioned caregivers regarding the presence or not of feeding problems among children with spastic CP who needed assistance with activities of daily living. The mean age of the children was 9 years and GMFM motor development level was between 4 and 5. Caregivers reported that only 31% of children sometimes/always have an eating problem. All children were observed during lunch, and 99% of children had dysphagia symptoms that ranged from mild to severe. In that study, no relationship was found between the response to the question by the caregivers and the severity of dysphagia. Further, none of the caregivers thought that there was an important insufficiency in their children’s feeding. In another study [27], caregivers of 23 children (52% fully ambulatory, GMFM between 1 and 3) admitted to the feeding therapy unit were questioned. In that study, the most frequent complaint (82.6%) reported by caregivers was drooling; only 17.4% of the children were brought due to difficulty in eating solid food. When evaluating the functional feeding status, they found that a majority of the children had a feeding problem. In our study, 76.6% of the caregivers (the majority with GMFM levels of 1-3) reported a feeding time longer than 45 minutes. The most frequently reported symptoms were difficulties in eating large and solid food (59.4%, 58.7%, respectively). These children did not receive medical support for feeding problems. Furthermore, 71.95% of children had a history of at least three lung infections treated at home and or in the hospital. In the present study, it was determined that caregivers of children with spastic CP do not pay enough attention to feeding problems, and if the symptoms were investigated individually, their awareness of such problems would increase. We found that difficulty in eating large and solid foods was observed more frequently than drooling. This may be attributed to the content of questions in our study being different from that of other studies. We questioned the feeding characteristics in detail. Thus, we think that the history of lung infection and detailed questions of symptoms observed during feedings should be asked of each caregiver of children with CP. Dysphagia is defined as difficulty in swallowing and is characterized by a dysfunction in the sequential oral preparatory, oral, pharyngeal, and esophageal phases of the swallowing process. In the literature, pharyngeal phase symptoms and findings were often kept in the foreground and questioned due to aspiration as a morbidity and mortality factor [28] [29]. These studies were often in children with moderate or severe motor retardation and observed severe dysphagia. Studies conducted in the last 10 years with increase in the use of videofluoroscopic methods have reported that problems of the oral preparatory and oral phase need to focus on the real problem in dysphagia. However, these studies consist of different patient groups, and results of oral preparatory and oral phase problems also differ between them [30] [31] [32] [33] [27]. In these studies, while the common dysphagia finding in children with mild or moderate motor retardation was reported as difficulty in chewing [27] [33], in children with severe motor retardation, it was reported as difficulty in chewing and poor lip and tongue movements [30] [31] [32]. The result of our study is different from the literature due to our working group being composed mostly of children with mild or moderate motor retardation. We found that in contrast to difficulty in chewing, poor tongue movement was the most common examination finding. This may be related to the wide anatomical distribution in the brain of control centers for tongue movement, as noted recently in some studies [34] [35]. Dysphagia is an individual component of feeding, as are oral motor planning skills and orofacial dysfunction. These components are important for food transport in the oral phase [36]. In one study [30], it was found that mealtime duration for solid foods in children with CP and mild-moderate motor retardation (GMFM 1-2) and mild dysphagia is longer than in healthy children. It was also reported that functional feeding skills including lateral, circular, anterior, and posterior movements of the tongue and movements of the jaw, lip and cheek are decreased

in children with CP. As a result of that study, it was reported that the required complex skills may be inadequate in children with mild dysphagia, and caregivers and physicians may not give enough attention due to various compensatory mechanisms and modifications such as food change. Our result demonstrating the presence of poor tongue movements in almost all children may be due to insufficient complex skills. Dysphagia may result in several complications including dehydration, malnutrition, airway obstruction, aspiration pneumonia, and death [10]. This status may cause the secondary problems such as psychological disorders and social isolation. However, none of the caregivers in our study complained of nutritional deficiency, though almost all children showed malnutrition when evaluated according to weight, height, BMI, and arm circumference. This may be because physicians and caregivers of children may regard growth retardation as a component of CP. Conditions such as food refusal, choking during feeding and prolonged mealtime duration can be frightening for caregivers [37]. There is no study comparing caregivers of children with and without dysphagia in terms of quality of life and psychological status, including anxiety and depression. Studies in the literature have demonstrated that quality of life among caregivers of children with CP is significantly lower and depression and anxiety levels higher than among mothers with healthy children [13] [38] [14]. Moreover, it has been reported that caregivers of children with CP may be at risk for depression [14]. According to our study, anxiety and depression levels were higher than normal levels, but there were no significant differences between caregivers of children with and without dysphagia. These results are consistent with the literature, but results of quality of life in our study differ from those in the literature. We found deterioration in quality of life, including energy, emotional reaction, sleep, social isolation, physical abilities, and general distress levels, in caregivers of children with dysphagia compared to those of children without dysphagia. The difference in the level of social isolation was especially notable. This result demonstrated that presence of dysphagia is not only a major problem for children, but also causes an important disability for caregivers. Conclusion Cerebral palsy cannot be cured, but the dysphagia symptoms and complications can be eliminated utilizing various therapy methods. Therefore, identification of dysphagia is important for optimizing management of nutrition, preventing complications and improving the general health of both children and caregivers. As a result, we suggest that feeding should be screened regularly in children with CP without waiting for specific complaints from caregivers. There is no conflict of interest among the authors (Ebru Umay, Ece Unlu, Aytul Cakcı) There is no funding source in this study. References Stempien LM, Gaebler-Spira D. Rehabilitation of children and adults with cerebral palsy. In: Braddom RL, ed. Physical Medicine and Rehabilitation. Philadelphia: WB Saunders; 2000. p. 1191-212. 2. Bhushan V, Paneth N, Kiely J. Impact of improved survival of very low birth weight infants on recent secular trends in the prevalence of cerebral palsy. Pediatrics. 1993;91:1094-100 pubmed 3. Crichton J, Mackinnon M, White C. The life-expectancy of persons with cerebral palsy. Dev Med Child Neurol. 1995;37:56776pubmed 4. Fung E, Samson-Fang L, Stallings V, Conaway M, Liptak G, Henderson R, et al. Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy. J Am Diet Assoc. 2002;102:361-73 pubmed 5. Strauss D, Shavelle R. Life expectancy of adults with cerebral palsy. Dev Med Child Neurol. 1998;40:369-75 pubmed 6. Hamdy S, Jilani S, Price V, Parker C, Hall N, Power M. Modulation of human swallowing behaviour by thermal and chemical stimulation in health and after brain injury. Neurogastroenterol Motil. 2003;15:69-77 pubmed 7. Identification and management of dysphagia in children with neurological impairments. Aust Nurs J. 2011;18:31-4 pubmed 8. Dahl M, Thommessen M, Rasmussen M, Selberg T. Feeding and nutritional characteristics in children with moderate or severe cerebral palsy. Acta Paediatr. 1996;85:697-701 pubmed 9. Stallings V, Charney E, Davies J, Cronk C. Nutrition-related growth failure of children with quadriplegic cerebral palsy. Dev Med Child Neurol. 1993;35:126-38 pubmed 10. Groher ME, Bukatman R. The prevalence of swallowing disorders in two teaching hospitals. Dysphagia 1986;1:3-6. 11. Motion S, Northstone K, Emond A, Stucke S, Golding J. Early feeding problems in children with cerebral palsy: weight and neurodevelopmental outcomes. Dev Med Child Neurol. 2002;44:40-3 pubmed 12. Bumin G, Gunal A, Tukel S. Anxiety, depression and quality of life in mothers of disabled children. SDU Med Sch J 2008;15(1):6-11. 13. Altindag O, Iscan A, Akcan S, Koksal S, Ercin M, Ege L. Anxiety and depression levels in mothers of children with cerebral palsy. Turk J Phys Med Rehab 2007;53:22-4. 14. Manuel J, Naughton M, Balkrishnan R, Paterson Smith B, Koman L. Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol. 2003;28:197-201 pubmed 15. Bohmer C, Klinkenberg-Knol E, Niezen-de Boer M, Meuwissen P, Meuwissen S. Dental erosions and gastro-oesophageal reflux disease in institutionalized intellectually disabled individuals. Oral Dis. 1997;3:272 -5 pubmed 16. Physical status: the use and interpretation of anthropometry. Report of a WHO Expert Committee. World Health Organ Tech Rep Ser. 1995;854:1-452 pubmed 17. Fredriks A, van Buuren S, Jeurissen S, Dekker F, Verloove-Vanhorick S, Wit J. Height, weight, body mass index and pubertal development reference values for children of Turkish origin in the Netherlands. Eur J Pediatr. 2003;162:788-93 pubmed 18. Beck A, Ward C, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry. 1961;4:561-71pubmed 19. Beck A, Epstein N, Brown G, Steer R. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol. 1988;56:893-7 pubmed 20. Wade TD. Measures of handicap and quality of life. In: Wade TD, ed. Measurement in Neurological Rehabililation. London: Oxford University Press; 1992. p. 231-59. 21. Reilly S, Skuse D. Characteristics and management of feeding problems of young children with cerebral palsy. Dev Med Child Neurol. 1992;34:379-88 pubmed 22. Gisel E, Alphonce E. Classification of eating impairments based on eating efficiency in children with cerebral palsy. Dysphagia. 1995;10:268-74 pubmed 1.

23.

Reilly S, Skuse D, Poblete X. Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: a community survey. J Pediatr. 1996;129:877-82 pubmed 24. Calis E, Veugelers R, Sheppard J, Tibboel D, Evenhuis H, Penning C. Dysphagia in children with severe generalized cerebral palsy and intellectual disability. Dev Med Child Neurol. 2008;50:625-30 pubmed publisher 25. Thach B. Maturation and transformation of reflexes that protect the laryngeal airway from liquid aspiration from fetal to adult life. Am J Med. 2001;111:69S-77S pubmed 26. Sullivan P, Juszczak E, Lambert B, Rose M, Ford-Adams M, Johnson A. Impact of feeding problems on nutritional intake and growth: Oxford Feeding Study II. Dev Med Child Neurol. 2002;44:461-7 pubmed 27. Yilmaz S, Basar P, Gisel E. Assessment of feeding performance in patients with cerebral palsy. Int J Rehabil Res. 2004;27:325-9pubmed 28. Rogers B, Arvedson J, Buck G, Smart P, Msall M. Characteristics of dysphagia in children with cerebral palsy. Dysphagia. 1994;9(1):69-73. 29. Arvedson J, Rogers B, Buck G, Smart P, Msall M. Silent aspiration prominent in children with dysphagia. Int J Pediatr Otorhinolaryngol. 1994;28:173-81 pubmed 30. Gisel E, Alphonce E, Ramsay M. Assessment of ingestive and oral praxis skills: children with cerebral palsy vs. controls. Dysphagia. 2000;15:236-44 pubmed 31. Gerek M, Çigiltepe M. Dysphagia management of pediatric patients with cerebral palsy. Br J Dev Disab 2005;51(1):57-72. 32. Del Giudice E, Staiano A, Capano G, Romano A, Florimonte L, Miele E, et al. Gastrointestinal manifestations in children with cerebral palsy. Brain Dev. 1999;21:307-11 pubmed 33. Troughton K, Hill A. Relation between objectively measured feeding competence and nutrition in children with cerebral palsy. Dev Med Child Neurol. 2001;43:187-90 pubmed 34. Zald D, Pardo J. The functional neuroanatomy of voluntary swallowing. Ann Neurol. 1999;46:281-6 pubmed 35. Furlong P, Hobson A, Aziz Q, Barnes G, Singh K, Hillebrand A, et al. Dissociating the spatio-temporal characteristics of cortical neuronal activity associated with human volitional swallowing in the healthy adult brain. Neuroimage. 2004;22:1447-55 pubmed 36. Hiiemae K, Palmer J. Food transport and bolus formation during complete feeding sequences on foods of different initial consistency. Dysphagia. 1999;14:31-42 pubmed 37. Crowe T, Florez S. Time use of mothers with school-age children: a continuing impact of a child's disability. Am J Occup Ther. 2006;60:194-203 pubmed 38. Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair. 2005;19:232-7 pubmed ISSN : 2334-1009