**2.2 Impact of cerebral palsy on family relationships**

In the African context, family is a source of strength, and a shoulder to lean on during difficult times. Failure of the families to take up this extensive role has devastating effects on the lives of other members in the family. The family is a complex and interactive social system and each experience within family, affect every member. Components of the system continually change to keep it in balance. Within the family, there are three central subsystems: the spousal, parental, and sibling subsystems. In these three subsystems, marital relationship, is seen as a key factor in determining the quality of family life and core of the family unity. Raising a child with CP may be

compounded if the parents of such children does not receive sufficient support within the family. Studies have shown that, living and caring for a child with CP can have a profound effect on parents- family, siblings and extended family relationships [10].

High stress levels, anger, depression that are evident in most families of children with CP are as a result of emotionally traumatized, broken family ties. Literature has shown that, the presence of a child with CP may have positive and negative influences on the relationships between families [2]. On the positive side, it can broaden horizons, increase family members' awareness of inner strength, enhance family bond and encourage networks to existing community groups [1], on the other hand, the physical, emotional demands and logistical complexities associated with raising a child with CP may have a negative effect on parents and families. Living with such a child can be a source of distress to families who might face several challenges to come to terms with the functional limitation of a child with CP.

#### *2.2.1 A child with cerebral palsy and siblings*

CP is a neurodevelopmental, irreversible and lifelong disorder that may have an impact on the life of families including siblings. It is important to understand the role of siblings towards raising a child with CP and what emotions do they feel towards this sibling with developmental disability. In normal families, older siblings play a facilitative role in cognitive and social development of younger siblings [11]. They also play a facilitative role in building a communicative competence among younger siblings whereby they play a role in stimulating language development. This facilitative role becomes a challenge should a child who is supposed to be mentored by older sibling is intellectually challenged. A significant number of older siblings of a child with CP, normally assumes the role of older siblings, regardless of their age, even the youngest sibling is able to take up such role. The ability of siblings to take up a caring role, depends on a number of factors, for example, the socio-economic status of families, the attitudes and expectations of parents and the severity of the disability [11] may affect the way the siblings react to the child with disability. Several studies reported that, the more severe the disability the more adversely affected the sibling of a child with CP [9].

Most of the powerful ties and human interactions are found between siblings as they act as surrogate parents, teachers and friends of children with CP. Thus, sibling relationships becomes very important in families, especially those living with physically or mentally challenged children. In main instances families of children with CP, do not receive emotional support when dealing with a child with CP. Literature has shown that, living with a child with CP involves tackling a wide range of challenges, such as physical, cognitive and behavioral [12]. Instead of engaging in activities such as socialization with others, participating in recreational activities, siblings of functionally challenged child devote most of their time in caring activities. Some suffers stigmatization by members of the society, calling them with names that relates to the child 's disability [2]. Bullying is another negative aspect that siblings of a child with CP face. Studies have indicated that siblings of physically or mentally challenged children are themselves a target for bullies [13]. They are teased of having a sibling with a developmental disorder.

In some families, the attention that parents gives to a child with CP, may create problems to other siblings as they may feel that their parents are neglecting them. This may result in increased stress levels, anxiety and depression among such siblings. Therefore, it's not a surprise that siblings who grow up with a sibling with CP tend to be a little more stressed when compared to children who do not live with someone

#### *Impact of Cerebral Palsy on Parents and Families DOI: http://dx.doi.org/10.5772/intechopen.106470*

with the disorder [13]. A study that was conducted in Ghana suggested that, the attitudes of siblings of children with CP need to be understood to ascertain ways to facilitate their acceptance in society as at times they face stigmatization as well as being sidelined by their own parents [14]. On a positive note, caring for a child with CP, may lead to increased maturity, sense of responsibility and tolerance among siblings [12, 14]. They're often more well-adjusted than their peers and more empathetic and caring towards people with special needs.

### *2.2.2 Cerebral palsy and marital relationships*

High quality marital relationships in any marriage serve as a strong foundation of emotional and instrumental support. This support becomes more relevant and critical when parents in this relationship are faced with challenges of parenting a child with developmental disability and mostly CP. There is a growing evidence that, the stronger the bond between two parents of children with CP, the more the parents are likely to live a satisfying life [15] where they are able to support each other through thick and thin. Moreover, the high quality marital relationships may further reduce stress related ailments, thus promoting psychosocial wellbeing for both parents and a child with CP. Meanwhile, several studies have indicated that there is a strong association between high quality marital relationships and a considerate burden of living with a child with CP [15]. Parents with satisfying relationships normally experience less stress levels than those with troubled relationships. Although there are conflicting opinions from several authors who investigated the effects of disability on marital relationships, studies that compared marital relationships between parents of children with developmental disability and those of children without disabilities found that there was no significant difference in marital quality [16]. However, while some families of children with CP are free from stress and depression associated with parenting child with functional limitation, some families are challenged with the caring burden of living with a child with CP. The high stress levels among parents is believed to be associated to a number of factors i.e. caring burden as parents especially mothers have to renounce some of the activities of the daily living and concentrate more on the child with CP, medical expenses attached to parenting a child with CP, lack of social institutions that may incorporate the child with CP to the rest of the society and some reactions from members of the society who thinks raising a child with CP is a waste of time [2].

Given the indication that some children with CP often exhibit higher rates of behavioral problems than typically developing children, the relation of behavioral problems to parental wellbeing indicates that, interventions which address the child behavioral problems should be well-thought-out [1, 16]. The impact of a conflicting marriage on parental wellbeing should be well understood by trained professionals such as teacher and health care providers, who interacts with these families from time to time. Some literatures have revealed the act of blame especially among fathers of children with CP, where they are blaming mothers for being responsible for the child 's developmental disability [1]. This may however, result in high stress level and depression to the mother. The blame game can be a starting point of conflicting relationship which may result in divorce of such parents. Therefore, it is of utmost importance for professionals in the health sector to include parents, especially mothers when designing intervention for a child with CP as parents seems to be more affected than the people they are caring for [1, 17].

Studies that examined the influence of partner support on maternal stress and depression found that, mothers experienced high levels of stress when their child

had cognitive impairment, even if partner support was high. These authors reiterated that, family functioning in families with a disabled child is better when the father is not directly implicated in caring for the child and mothers receive support from other people for the caring task [17]. The presence of spouse and their participation in the child's care provoked bitter feelings among mothers leading to parenting stress. Meanwhile, in some families, social support plays a significant role in minimizing parenting stress and improving life satisfaction [2]. Parenting stress is a negative psychological feeling associated with anxiety, frustration, and self-blame that can affect parenting behaviors and parenting functioning, while social support may be conceptualized as the provision of emotional, informational, and/or instrumental assistance that individuals receive from their social network [18]. There is a positive correlation between social support from families including spouse and parenting stress. Social support has been found to play an important mediating role in the association of several personal factors e.g. depression and emotional intelligence with life satisfaction [19]. The stronger the spousal relationship, the lesser the levels of stress will be among such parents, and this may eventually lead to life satisfaction.

#### **2.3 Economic burden of cerebral palsy**

The advancement in medical technology has increased the chances of children with CP to survive into adolescent and adulthood. However, this has led to the rise in the number of children with CP worldwide. Children with CP like other children with any form of disability requires an exceptional care with more cost implications. Although one might argue that, all children whether born with disability or not, often requires care with financial costs attached to it. Of course, all children require care with cost implication but the care and cost implications attached to a child born with CP or any other child with developmental disability is far much higher than that of other normal child. Documented studies have shown that the majority of families with children living with disabilities resulting from anomalies lives under severe poverty, remote from information and therefore not covered by the world statistics [20].

There is a growing evidence in the literature that parents of children with CP face unique financial challenges and meeting their child's needs and making financial ends meet is difficult for most of the parents. The management for CP includes various therapies, involving speech and physical therapy, as well as learning to use any sort of assistive device. In most cases, there is a need for the provision of special education at school and medication for some associated problems such as seizures, spasticity, and hearing or visual impairment. Apart from the costs related to health and education, children with CP also have specific needs related to basic care, some of children with CP need special diet for which the cost might be higher than the parents or family can afford. Most of the children with developmental disability or CP are bedridden which places another extra burden to parents and family, as this child may spent the rest of his life using disposable nappies [1]. Moreover, some children might need basic commodities such as special soaps and lotions, failure to use such commodities may lead to an extra health related condition and more financial implications.

Studies that investigated the economic burden on parents and family suggested that, countries that took a stance to provide financial assistance to children with disability should however, consider certain variables i.e. children with comorbidity and those without [21]. It is most likely, that parents of children with CP and comorbidity will have more financial burden than those without comorbidity, secondly, Older children require more financial assistance than younger children and government

#### *Impact of Cerebral Palsy on Parents and Families DOI: http://dx.doi.org/10.5772/intechopen.106470*

should streamline their budget on disability to ensure equity in distribution of such resources. Meanwhile, it is an unfortunate state that, even governments that provide financial assistance to people with disability have not addressed the state of affairs of children with disabilities properly, in most cases the governments decide what, how much and how often to provide to such children. Studies that assessed the financial burden of families of children CP found that, older children with CP required more financial assistance than normal children, and families with above average income could afford required minimal financial resources as it was found that they had no daily nursery expenses [21]. This shows that, there is in fact a necessity for need assessment to be carried out before countries attempt to assist parents of children with CP financially. The financial burden experienced by families of children with CP is less comprehensible to most governments. Therefore, evidence based information on the economic burden of CP, need to be available to assist policy makers in planning reasonable services and support for children with CP and other forms of disability.

Meanwhile, some studies have shown that children who experience limitations in daily activities require two to three times higher medical services than typical children [22], for example, a child with CP incurs a mean total average lifetime healthcare costs of US\$22,143.00, whereas a child without any lifetime healthcare needs only incurs costs of US\$1729.00, approximately 13 times lower [21]. Lifetime healthcare cost of a child with CP in South Korea was calculated to be US\$26,383.00, which is 1.8 times the basic lifetime healthcare cost of the general population, US\$14, 579.002. These healthcare needs lead to a higher cost of caring for children with CP as compared to children who are typically developing and the total cost often exceeds family's expectation [22]. Thus, children with developmental disability accompanied by comorbities.
