Spina Bifida and the Challenge - and Opportunity - of Caregiving at Home
By Anne Marie Webster, APRN, MSN, CPNP, PMHS
Earn 2.0 CEUs for this e-learning opportunity.
March 5, 2012
The Rosalyn Carter Institute for Human Development states, “There are just four kinds of people in the world: those who have been caregivers; those who are caregivers; those who will be caregivers; and those who will need caregivers.”
In the United States, spina bifida is the most common permanently disabling birth defect. It affects approximately 3,000 births per year. The rate of spina bifida has decreased with the recommendation of folic acid supplementation and better overall nutrition, and 90 percent of children who are born with spina bifida are living a normal lifespan. In order to live a normal lifespan, these children need ongoing medical care in a multitude of areas. These children are followed routinely by urologists, neurosurgeons, developmental pediatricians, orthopedic surgeons, and physical and occupational therapists at a minimum. Their needs are lifelong, complex and extensive.
The Challenges of Caregiving
Most people think of caregiving as a role they might assume for an elderly parent, not for their child. Parents are often the first line of caregivers for their children and many are unprepared for all that this entails. Caregiving for a disabled child has distinct aspects that elderly caregivers may not encounter. The parent may not be prepared to advocate for their child, to navigate the school systems as well as the medical system and prepare their child for an independent life without them. Many parents are overwhelmed by the financial strains and unpredictable challenges that wait.
Children with spina bifida have medical needs from birth and these multiply with time. Medical needs aside, the functional, developmental, and social needs of these children may be more consuming than the medical needs. As medical providers, we may assume the quality of care correlates with the adherence to the medical plans. What are often overlooked are the other factors that are affecting the family. According to Wells and Cagle (2011), if we as providers expect to meet the outcomes for quality patient care, then we need to value the role of the caregiver. Stressors, such as time away from work or financial difficulties, are bound to affect care. If the primary caregiver is not in good health, does not have healthy coping mechanisms, or outside support they will have difficulty filling this role. It is then up to the healthcare provider to take the extra time to assess the caregiver's knowledge base and find ways to meet their needs.
Caregiving can be a full-time job and may require additional skills and training. Many caregivers have little to no preparation for these duties and this is overwhelming (Moghimi, 2007). Discharge instructions tend to be hastily reviewed prior to going home and often do not include the caregiver. The caregiver also may not have had time to practice the tasks and/or ask questions. This will impact their confidence and ability to care for their loved one at home. It is evident that as more and more children are living with chronic illnesses and the cost of healthcare increases, more energy needs to be funneled toward caregiver readiness.
Measuring the Rewards
So much focus has been on the burden of caregiving, but there is another side of caregiving that is very positive. There are numerous articles in which the caregiver describes their experience as: rewarding, filled with meaning, spiritually satisfying, a companionship, and fulfilling in giving of self and in helping others (Feeney & Collins, 2003). After all, caregivers usually have a personal relationship with the child and know them better than any other person. They have more insight into their needs, their likes and dislikes, and past history. The medical team often looks to the caregiver to report changes that may not be noticeable to an outsider, but may be very noticeable to someone that knows them better.
I have seen on numerous occasions where the medical team will make assumptions on the level of functioning of a child when the caregiver(s) are not at the bedside. One instance stands out in my mind. A teenage boy with spina bifida, but also with moderate mental retardation, was brought to the emergency room via an ambulance after having fallen out of his wheelchair at school. The school was not sure why he fell out of his chair and wanted an evaluation. In the emergency room the boy was alert and interactive with the examiner, smiling, waving, and giving the nurse “high fives,” but did not speak. As there was no one who knew this teenager very well, they assumed that this was his baseline. With a normal neurologic exam, the team waited for the parent to arrive and planned on discharging him. When the parent arrived they were very surprised that he was not speaking, not answering their questions; they explained to the medical staff that he normally was very verbal. The staff listened and ordered a CT scan of his brain. The CT scan showed increasing ventricles and the need for a revision of his ventro-peritoneal shunt. Granted, that is just one way that caregivers advocate for their child, but the value is not questionable.
Caregiving with children with chronic illnesses, like those with spina bifida, is complicated. It is challenging and unique to each family. Some families are better at assuming this role, but our responsibility as medical providers is to find a way to work with the caregiver in order to give the best quality care. The family, who is in the hospital numerous times each year and in and out of the emergency room, is familiar with the system. They may be weary of explaining their child to one more resident or nurse. They are often labeled as a “difficult” parent. Often, providers are hesitant to get involved in their child’s care because it is so complex or the parent is intimidating. It is these families who need the providers to realize and respect the caregiver role. If the caregiver is acknowledged for their knowledge and skills and the provider approaches them with a collaborative or a team approach, the likelihood of follow through will undoubtedly increase. It is our job to work in conjunction with caregivers to see that the care meets the need of the child, but also reasonably fits into the family’s needs and lifestyle.
Feeney, B., & Collins, N. (2003). Motivations for caregiving in adult intimate relationships: Influences on caregiving behavior and relationship functioning. Personality and social psychology bulletin, 950-968.
Herzer, M., Godiwala, N., & Hommel, K. M. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 26-34.
Moghimi, c. (2007). Issues in caregiving: The role of occupational therapy in caregiver training. Topics in Geriatric Rehabilitation, 269-279.
Wells, J., & Cagle, C. (2011). Family Caregivers: present and accounted for. Nursing made incredibly easy!, 45-51.
Anne Marie Webster, APRN, MSN, CPNP, PMHS
, is a pediatric nurse practitioners/clinic coordinator with the Medical University of South Carolina. Ms. Webster graduated from Miami University in Oxford, Ohio, with a Bachelor’s of Science in Nursing in 2001. During a summer break, Anne Marie worked at a local camp near her home with special needs children. The following summer she took a position as a camp nurse for a similar camp with children with physical disabilities. This was a great experience to participate in the day-to-day care of children with spina bifida, cerebral palsy, and paraplegia and influenced her career direction. While completing her BSN, she worked on an adult medical-surgical floor as a beginner RN. After graduating, Anne Marie moved to South Carolina where she started working in their level three-neonatal intensive care unit. While working there, she attended graduate school on a part-time basis. In the NICU, she became a charge nurse, stabilization nurse, and preceptor for new nurses. Despite loving the ICU, pediatrics was her focus. In 2005 and 2006 respectively, Anne Marie graduated with an MSN from the Medical University of South Carolina as a Pediatric Nurse Practitioner and Psychiatric-Mental Health NP. At that time she started working at MUSC Children’s Care Clinic, a medical home, where she provided primary care to a mostly Spanish-speaking population. This allowed her to use her Spanish skills that she obtained as an undergraduate. There she started a support group for Spanish-speaking families with special-needs children.
She began working as a coordinator and NP for the spina bifida and pediatric brain tumor clinics in 2011, which comes full circle to her time spent at camps. In this role, she developed a more comprehensive clinic and plans to start a transition clinic working with adolescents with chronic healthcare needs. Anne Marie is certified by the Pediatric Nurse Credentialing Board in Pediatrics as well as Pediatric and Adolescent Mental Health.Earn 2.0 CEUs for this e-learning opportunity.