Caring for an Adolescent or Young Adult With Severe Cerebral Palsy

Parents of children with functional disabilities often assume roles more than common parents, the degree of which varies in relation with the intensity, complexity of the disability and family caregiver experiences. It has always been a challenge for parents to care for children with physical disabilities because they have to balance between complex care needs of children, and family and personal life. This is especially true for a family with a young adult or adolescent suffering from severe Cerebral Palsy (CP) which requires them to cater for the child’s complex needs as the child “grows past” pediatric and educational support services. This normally occurs after twenty one years of age. Research estimated that 3.9 in every 1000 children are affected by cerebral palsy making it the most common cause of motor disability in children (cdc.gov, 2014, Yeargin-Allsopp et al., 2008).  The main effect of CP is motor dysfunction but it may also present hearing, visual, communication and behavioral problems and even though today, 65-90% of people affected will live into their adult years, it means that parents will likely to assume long-term responsibilities as the caregivers. Families of children suffering from CP needs access to information and services to ensure in-house care because in most of the cases healthcare and social systems fail to take proper care of these children.

The role of the family caregiver is often taken up by the mother which normally exceeds the normal parenting activities in terms of complexity and intensity.  The study aimed to describe the meaning of maternal caregiving in the environment of adolescent caregiving and investigate the crucial components of maternal care giving that mothers experience while caring for young adults or adolescents with extreme physical disabilities due to CP.

The hermeneutic inquiry approach, which suggested that everyone acts purposefully in and on the world by creating meaning was employed by the study. This approach was utilized for the methodical study of the mothers’ life aiming to discover the meaning or nature of her day to day care giving experiences. The participants were 11 Caucasian women with nine of them being the children’s’ biological mothers while the other two were internationally adoptive parents. They were all also married to the biological or adoptive father of their child with cerebral palsy, college educated and had a mean age of 52 with ages ranging 41 and 63 years. Their children’s ages ranged between 15 to 22 years and were all permanent wheelchair users. Apart from one, all the children with CP experienced several co-morbidities related to CP including communication, feeding and visual impairment, and they had all experienced numerous hospitalizations for surgeries focused on managing musculoskeletal, dystonia and spasticity complications. For data collection, the study employed the use of a semi-structured audio taped 60 to 90 minute interview that included clarifying and open ended questions as well as questionnaires.

Results showed four major themes emerging as representations of maternal care givers from the participants’ responses with the predominant theme being “a different life.” Participants described their lives as diverting from the lives they expected to live as mothers but their responses also revealed the commitment and love that they had for their children. The other themes were; serving as my child’s voice, facing an uncertain future and finding my own way.

This article provides an insight into the role of a mother of children with CP- how it differs from the life of a mother with normal children. The experiment conducted and experiences of the participant mothers in this study may reveal how complicated mother’s role might get and how a mother can manage care for their adult children. The need to assume complex caregiver’s role, and the importance of locating, assessing and accessing healthcare services are emphasized in the article. The article projects on the prolonged role of a mother as caregiver, which seems never ending and thereby creates an awareness regarding the distinct nature of the care. A mother must adopt to her changing role as the child ages; it involves being habituated with heavier lifting, post-treatment caregiving and the ability to predict children’s condition. They must learn how to become spokesman for their handicapped children. The most challenging part for parents is to continue everlasting caregiver’s role, which changes and becomes more complex over time. In order to play the role successfully, the mother needs to train herself and learn basic healthcare tasks. In order to cope up with overwhelming responsibility and never-ending caregiving, the mothers may try alternative settings where they will be able to monitor their children to ensure proper care while balancing their own lives. Family support is essential in this regard because a mother solely cannot continue this complex role. A comprehensive family support may reduce the stress of the mother as primary caregiver and help her continue her responsibilities without much panic.

References

Burkhard, A. (2013). A Different Life: Caring for an Adolescent or Young Adult With Severe Cerebral Palsy. Journal Of Pediatric Nursing, 28(4), 357-363. http://dx.doi.org/10.1016/j.pedn.2013.01.001

cdc.gov,. (2014). What You Need to Know About Cerebral Palsy. Cdc.gov. Retrieved 14 October 2016, from http://www.cdc.gov/features/cerebralpalsy/

Yeargin-Allsopp, M., Van Naarden Braun, K., Doernberg, N., Benedict, R., Kirby, R., & Durkin, M. (2008). Prevalence of Cerebral Palsy in 8-Year-Old Children in Three Areas of the United States in 2002: A Multisite Collaboration. PEDIATRICS, 121(3), 547-554. http://dx.doi.org/10.1542/peds.2007-1270