Cerebral palsy is the neurological disorder and commonest cause of childhood physical disability. It affects movement and posture which are persistent but not necessary unchanging as a result of a defect or lesion that is not progressive in nature affecting the immature or growing brain (Rahman, 2015). When it is severe, results in marked difficulty with eating and drinking. Feeding problems occur early in life, often before other signs of a serious permanent movement disorder and during childhood nutrient intake will tend to be insufficient for energy requirements especially during periods of illness and growth spurt.
These aspects engender uncertainty and anxiety for mothers. The difficulty of movement control also means that the child will need help with other daily living skills and have great difficulty talking. There may also be other neurological problems such as epilepsy. All these features make eating and drinking more difficult. As most children with these difficulties live at home, the responsibility for providing their nourishment falls on mothers who often have little or no knowledge and expert support. It is therefore important that professionals understand mothers’ knowledge about nutrition of their child with CP (Sleigh, 2015).
Overall global prevalence rates of cerebral palsy (CP) are between 2 and 3 per 1,000 live births. Increased access to good healthcare services has reduced the prevalence of CP to 1.5 to 2.5 per 1,000 live births in developed countries. Trends are worse in poor resource countries such as sub?Saharan Africa where the prevalence is four times more than in developed countries (Mlinda, Leyna, ; Massawe, 2018).
The prevalence in USA is 2-2.5/1000 live birth, in Europe 2.08/1000(15), in China 1.6/1000(16). In Nigeria and Ethiopia 10/100,000 (17) and 20/100,000 population In Tanzania, the prevale(Rahman, 2015). prevalence of CP is unknown but it is estimated to be relatively much higher because of prevailing high perinatal morbidity(Mlinda et al., 2018). Other associated causes of cerebral palsy include birth asphyxia, birth trauma, and convulsion of unknown cause.
Childhood disability and poor nutritional status is often the commonest cause of early child mortality. Their nutritional status depends on proper nutritional awareness, knowledge, and complementary feeding practice by the mother (Mazumder, Rahman, Mollah, ; Haque, 2015; Rahman, 2015). Inability to self feeding and inability to request for food due to communication problems; result in feeding problems and poor nutritional status in children with CP (Rahman, 2015).
Poor motor skills also causes difficulties in manipulation of food once it is in the mouth placing children with CP at increased risk of aspiration and chocking/coughing while feeding which may further cause aversion of food, as well as inadequate nutritional intake. Lack of time and appropriate knowledge on special feeding needs of children with CP negatively impacts the child’s feeding. It also causes stress to caregiver and affects interaction with the child (Mlinda et al., 2018). Malnutrition is commonly considered as an important risk factor that can produce a negative influence on the prognosis of patients with Cerebral palsy (Mazumder et al., 2015).
Nutrition plays an important role in muscles growth and development, for children with cerebral palsy. These children require balanced diet as the normal children with respect to their age and body needs. Since they have difficulty feeding practices and low tendency to request food due to their disability, they need special attention from their mothers on nutrition. Knowledge of mothers on nutrition determines the nutritional status of their children with cerebral palsy.
1.2. Problem statement
Malnutrition is currently big problem in children with cerebral palsy related disabilities in developing countries, failure to be addressed will results in poor prognosis of patients, child mortality, Parents denial, anger and blaming of the medical system for poor quality treatment, stigmatization/isolation of children in the family and community at large which has direct psychological effect on both parents and the child.
Poor knowledge of parents about nutrition of children with disability has increased the rate of malnutrition in sub-Saharan countries.
Cerebral palsy is the common worldwide neurological disorder, it’s the commonest cause of childhood physical disability (Rahman, 2015) Overall global prevalence rates of cerebral palsy (CP) are between 2 and 3 per 1,000 live births. Increased access to good healthcare services has reduced the prevalence of CP to 1.5 to 2.5 per 1,000 live births in developed countries. Trends are worse in poor resource countries such as in sub?Saharan Africa where the prevalence is four times more than in developed countries (Mlinda et al., 2018).
Knowledge of mothers about nutritional requirements of their children with cerebral palsy related disabilities is limited in developing countries like Tanzania, Nutrition and disability are intimately related, Both are global developmental priorities and elimination or prevention of malnutrition will improve health and well being of the children with disabilities (Mazumder et al., 2015).
As the prevalence of cerebral palsy is high in developing countries and mothers are primary caregivers of the children at home and health care facilities it’s important to conduct the study in Tanzania to rules out the level of knowledge of mothers about nutrition of their children in order to come out with concretes solution on preventing poor and negative prognosis of patients with cerebral palsy so as to improve their health and well being (Mlinda et al., 2018)
This study will improve feeding practices and nutritional status of children with cerebral palsy. Through knowing the level of knowledge about nutrition of the children we can come out with specific intervention like providing education to the mothers at the health care facility and home based education to enhance good feeding practices to the child with cerebral palsy to prevent malnourishment.
1.3. Research objectives
1.3.1 Broad objective
To assess the knowledge of mothers about nutrition of children with cerebral palsy in pediatric unit at MNH from November 2018 to March 2019.
1.3.2. Specific objectives
2. To evaluate the level of knowledge of mothers with respect to education level about nutrition of their children with cerebral palsy (CP) in pediatric unit at MNH.
3. To assess the nutritional status of cerebral palsy patient in pediatric unit at MNH.
1.4. Research questions
1. Is there a relationship between low weight (malnourishment) in children with cerebral palsy and levels of knowledge of their mothers about nutrition?
2. Is there any difference in levels of knowledge of mothers about nutrition of their child with respect to education level?
1.5. Research hypotheses
1. Children with cerebral palsy from mothers with high level of knowledge on nutrition of their children are less likely to be underweight compared to children with cerebral palsy from mothers with low level of knowledge on nutrition of their children
2. There is no any difference between levels of knowledge of mothers about nutrition of their children with respect to their education level.
1.6. Conceptual framework
The conceptual framework has been constructed with reference to different literatures and personal view that explain the factors related to knowledge of mothers about nutrition of their children with cerebral palsy also other studies explaining knowledge, altitudes and practices of mothers of children with cerebral palsy, and feeding practices of children with cerebral palsy has significantly contributed to the construction of this conceptual framework.
Education status of mothers has shown important association with the knowledge of mother, age of the mother also has association with knowledge about nutrition of children, information about nutrition received from health care workers and parenting practices also can be associated with level of knowledge of mother about nutrition of their children.
CHAPTER TWO: LITERATURE REVIEW
Cerebral palsy is the neurological disorder and commonest cause of childhood physical disability. It affects movement and posture which are persistent, but not necessary unchanging as a result of a defect or lesion that is not progressive in nature affecting the immature or growing brain (Rahman, 2015).
A study conducted in Bangladesh among the 100 children with cerebral palsy, 56% were boys and 44% were girls. Seventy seven percent of cases were underweight, while eighteen percent were within the normal weight and five percent were overweight. Majority of the respondents (seventy five percent) were currently giving only normal diet including soft/mashed foods like infant’s formula milk, dairy milk, rice, suji, infant’s formula cereals etc. except homemade energy density foods to their children, while 19% were given homemade energy density foods with complementary foods and the rest 6% were given only breast milk (Mazumder et al., 2015).
However, among low literacy mothers, 100% of the children were underweight whereas, it was 66% among high literacy mothers. Meanwhile, high literacy mothers had 18% normal weight child, but low literacy mothers had no normal weight child. Duncan Multiple Comparison Test (DMRT) showed that except class 1-9, all mothers who passed at least SSC level have same nutritional knowledge. However, knowledge about nutrition among mothers with CP is directly related with education (Mazumder et al., 2015).
A descriptive study conducted in Khartoum pediatric hospitals and Khartoum Cheshire Home for rehabilitation of disabled children. Two hundred and four children were enrolled in the study the mean age of the children was 46.06± (SD) 33.23 months. Among two hundred and four mothers half mothers 50.5% had good knowledge about CP and nutrition of their children and 49.5% of mothers had poor knowledge of CP and nutrition, 65% children belonging to mothers with good knowledge about CP and nutrition were malnourished and 98% of children from mothers with poor knowledge about CP and nutrition were malnourished (Rahman, 2015).
A study conducted in Taiwan to learn the experiences of mothers after learning their child diagnosis sowed that family members rejected the child, felt ashamed and that they had lost face due to the child’s disability, which further contributed to the mother’s hopelessness. Such rejection meant poor family support and failure to bond with the child. Some mothers felt that their parents-in-law thought they were not ‘good’ daughters-in-law, because they did not have a healthy baby. Such interactions prevented mothers from feeling a sense of identity, belonging and caring during this stressful time, leading to hopelessness and powerlessness in family relationships and this affected the level of mothers’ involvement in caring their children especially in nutrition requirement (Huang, Kellett, ; St John, 2015).
A study conducted at Muhimbili national hospital on the effect of a practical nutrition education programme on feeding skills of caregivers of children with cerebral palsy. There were two group intervention group and control group, in intervention group the mothers included were at least attended secondary school and the control group mothers had not attended to primary school. There were significant differences in feeding skills of caregivers in terms of better feeding positioning, slower feeding speed, better child support, and involvement during feeding. Caregiver-child interactions were also improved, where more caregivers of children in the intervention reported improved child mood and reduced caregiver stress during the feeding process than in control group (Mlinda et al., 2018)
Many studies concerning nutrition needs and feeding problems of children with cerebral palsy have been conducted in different parts of the world including Tanzania, but mothers knowledge about nutrition of their children were low therefore, assessing the knowledge of mothers about nutrition of children with cerebral palsy is an important issue since mothers are primary caregivers of the children. Then, there is a need to conduct the study in Tanzania in order to come out with important information on the knowledge of mothers about nutrition that will help in improving nutrition status of children with cerebral palsy.
Huang, Y. P., Kellett, U. M., ; St John, W. (2015). Cerebral palsy: Experiences of mothers after learning their child’s diagnosis. Journal of Advanced Nursing, 66(6), 1213–1221. https://doi.org/10.1111/j.1365-2648.2010.05270.x
Mazumder, S. I., Rahman, E., Mollah, A. H., & Haque, O. (2015). Knowledge about child nutrition among mothers of children with cerebral palsy. Asian Pacific Journal of Health Science, 2(1), 197–202.
Mlinda, S. J., Leyna, G. H., & Massawe, A. (2018). The effect of a practical nutrition education programme on feeding skills of caregivers of children with cerebral palsy at Muhimbili National Hospital, in Tanzania. Child: Care, Health and Development, 44(3), 452–461. https://doi.org/10.1111/cch.12553
Rahman, S. A. El. (2015). Knowledge, Attitude And Practice Of Mothers Of Children With Cerebral Palsy. Medical and Health Studies Board, 20(5), 98–106. Retrieved from http://khartoumspace.uofk.edu/handle/123456789/8400
Sleigh, G. (2015). Mothers’ voice: a qualitative study on feeding children with cerebral palsy. Child: Care, Health ; Development, 31(4), 373–383. https://doi.org/10.1111/j.1365-2214.2005.00521.x