Impact of Cerebral Palsy on Parents and Families

Abstract

Cerebral palsy (CP) is a societal problem that may pose significant challenges and unique opportunities not only for the individuals with CP but also for their care givers, families, and siblings. It is the most common pediatric disability causing long-term functional limitations. The impact of CP on parents, families as well as sibling is evident in the level of stress, anxiety and depression envisaged especially on mothers. Siblings of individuals with cerebral palsy also suffers stigmatization that often result in social isolation. The presence of a child with cerebral palsy in any family can pose serious concerns to family relationships. Therefore, it is of utmost important to value the contribution of every family member, parents, siblings towards any planned intervention for a child with CP as they are affected by the disability in one way or another. This chapter explores the impact of CP on individual parent, families. Siblings as well as financial constraints associated with raising a child with CP.

1. Introduction

The birth of a baby is a crucial event in the life of every human being. The dream of every parent becomes a nightmare if the baby they were expecting is born with cerebral palsy (CP). It is a complex neurodevelopmental disorder and is the leading cause of physical disability in childhood [1]. The condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. A child with CP suffers from several conditions, ranging from spastic paralysis, cognitive, speech and visual impairment, chronic pain and, gastrointestinal problems. As a result, the child will experience several limitations in life and may need to be cared for either by the parent or care taker. Moreover, such child may require assistance in almost all of the activities of the daily living, such as bathing, feeding as well as assistance with turning, lifting the child whenever one wants to go out. One of the major problem faced by parents is attending to chronic health condition that the child might be suffering from. There is a great evidence that a child with cerebral palsy may also suffer from other illnesses, apart from the disability [2]. Thus, when compared to parents of typically developing children, parents of children with CP experience greater stress, lower psychological well-being, and worse physical health [3].

CP refers to a group of permanent disorders in the development of movement and posture, causing activity limitations, which are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain [4]. The motor disturbance in a child with CP contributes to impaired cognitive ability, communication disorders, musculoskeletal problems, perception disturbance as well as epilepsy [3]. These problems associated with cerebral palsy may result in physical, social, psychological wellbeing and economic burden to the parents, families and community at large. The presence of a child with cerebral palsy in the family can be a source of great disappointment and stress to families. Significant number of research in this area has revealed the stress level endured by parents of children born with CP. The high stress levels among the parents were related to medical and social services that parents have to source during their predicament in raising a challenged child [2]. Mothers of children with CP are exposed to psychological pressure, are under the impact of stress and depression, and are worried for their child’s future [5]. Most of their time is spend on the child’s nutrition, health, treatment, rehabilitation and are subjected to financial burdens.

CP is an important example of a medical condition that requires competent, comprehensive, continuous, compassionate and community-based care [6]. Based on this, it is of utmost important to equip parents and their families with knowledge and skills to enable them to provide necessary support to their children. It is a permanent disorder that requires collective efforts from parents and health care providers such as occupational health therapist, speech and physical therapists. The health demands for a child with cerebral palsy may also place psychological, social and economic burden on parents and families. Therefore, it is also critical that primary care providers (PCP) be involved and knowledgeable about the current and future care plan for the best outcome for each child [6]. Parents, especially mothers are drivers of care, they do more work related to the care of a child. Caring for such a child who depends on care from others, can be energy draining, and mothers may require both social, psychological and financial support from other people to sustain their caring journey.

2. Effects of cerebral palsy

CP is a complex societal problem characterized, by social, psychological and economic implications requiring a collective multi-sectoral approach [2]. Parents often suffer from stress emanating from a number of factors; family members that feels taking care of a child with cerebral palsy is a waste of time and resources [6], financial strains that is incurred from medical expenses, transportation, nutrition, buying nappies as this child may spend the rest of her life in disposable nappies [5, 6] and many more. Despite all challenges endured by parents in caring for their children with CP, parents’ attitude towards their children remains positive. They are optimistic about the condition of their children and also believe that physiotherapy is a beneficial intervention in the management of their children [3]. These hopes that parents have for their children is the driving force behind their existence.

2.1 Cerebral palsy and quality of parental life

Parenting a child requires considerable resources and time, but the demand for these resources may increase if the child to be cared for is mentally or physically challenged. To manage and cope with a child ‘s functional limitation and possible life- long dependence presents a multifaceted challenge for parents as well as the entire family [7]. Although some parents cope well with the additional demand of raising a child with CP, some studies showed that parents of such children experience tension and struggle especially the mothers who has to be with this child most of the time providing care. Mothers of such children are overwhelmed with the caring responsibilities, some of them left even their formal employment to stay home with their disabled children. Relinquishing one ‘s career may pause a significant setback to ones’ life [8]. In some cases, mothers failed to take care of their own health and that of other siblings, thus affecting the physical and psychological health and, ultimately the quality of life of parents.

Caring for a child with CP may affect the quality of life for parents and families in many ways. Generally, parents of children with CP show high stress levels [2] and depression with ill-mental state compared to parents of children without disabilities. CP is a multifaceted disorder accompanied by several functional limitations. Although motor function is considered as the main challenge of CP, this developmental disorder is also accompanied by several limitations, such as sensory, communication and intellectual challenges [7]. Caring is a noble activity cherished by most of the mothers caring for young children in every community. This noble function may become a nightmare, when the child to be cared for is having functional limitations. Mothers of such children may go to an extent of diverting their focus from other important issues in the family and concentrate on the caregiving activities. Activities of the daily living may be overlooked, so as the other members in the family who might be depending on this caregiver for existence. This may however, results in high stress levels, anxiety and depression among caregivers.

Apart from the caregiving responsibilities, mothers of children with functional limitations are often challenged by chronic health- related problems that these children may experience in life. Several studies have affirmed that, most of the children born with CP usually suffers from one or two chronic conditions [2]. Thus, parents have to find means to respond to the health needs of the child with CP either through seeking for professional help from formal recognized health institutions or through home based therapies. Caring for a child with CP may affect the physical well- being, social well- being, freedom, independence of parents. The demands for caring for such a child has further created greater stress than the severity of the child ‘s disability, as it was revealed in one study, where parents with children born with CP felt that they were more disabled than the people there were caring for [9].

Parents of children with CP have lower quality of life which is associated with high levels of stress, anxiety and depression: The high stress level and depression is often associated with factors such as child’s behavior, cognitive problems, low caregiver self-efficacy and low social support [7]. Therefore, due to the physical, psychological and social challenges that parents of children with CP usually experience, there should be an ongoing intervention like social, psychological and financial support to alleviate suffering among such parent.

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 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 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.

3. Conclusion

CP is a lifelong problem that requires long term attention and care. The presence of a child with CP in any family can be a source of stress in any family and living with such a child may pose serious implications in terms of cost and social life to parents and families. The caring and economic burden endured by parents of children with CP has compromised immensely on the quality of life as it has affected the parents’ psychological and physical wellbeing of parents and family. The consequences of caring and economic burden has an impact on the psychological and physical wellbeing of parents. This calls for well- designed interventions to support parents of children with CP.

Acknowledgments

The author would like to thank all authors of sources cited in this chapter. The information extracted from your writings contributed immensely to the completion of the chapter. I would like to state that, this work was not funded by any person nor organization.

Conflict of interest

No conflict of interest.

Notes/thanks/other declarations

I declare that, the information included in this chapter is my own work and all sources used are acknowledged in the reference list of the chapter.