Parents of children with disabilities encounter stresses unlike those of families with typically developing children. Medical professionals must appreciate that they are not only treating the child but also the family. A state-of-the-art understanding of their patient’s disability is implied, but they must also understand the dynamics of raising a child with a disability, appreciate the different models of health care delivery, and provide guidance in transition to adulthood in healthcare as well as life (education, living arrangements, conservancy, etc). An awareness of the physical and mental health impacts on the parents of a child with a chronic disability should also be appreciated.
Key points
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There are a host of physical and mental stressors in caring for a child with a chronic disability.
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The child and the family progress through different medical aspects of their disorder, but also through different aspects of life.
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There are different models of care provision that can impact the family’s overall well-being.
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There are simple methods to interact with families that will increase their satisfaction and happiness.
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There are multiple challenges in transition and care of adults with disabilities.
Introduction
Medical professionals must remember that they are not only treating the child with a disability, they are also treating the family. The diagnosis of a disability for their child is usually one of the most unexpected and life-altering revelations in a family’s life. It is the responsibility of the medical care professional to not only have the state-of-the-art understanding of the child’s diagnosis and treatment, but also to appreciate the impact and implications of this diagnosis on the family. There are over 6 million children in the United States with severe disabilities and nearly all of them are cared for at home.
There are a host of physical and mental health problems in caregivers of children and adults with chronic disabilities. The consequences of impaired caregiver health include recurrent hospitalizations for their children and the decision to place their child outside of the home.
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Seventy percent of mothers of children with physical disabilities have low back pain.
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There is a higher incidence of migraine headaches, gastrointestinal ulcers, and greater overall distress.
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Parents report more anxiety, anger, guilt, frustration, sorrow, social isolation, self-deprivation, and depression.
Murphy and colleagues, in an excellent review and utilizing a focus group methodology determined 5 themes that encapsulate the caregivers’ experiences:
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Stress of caregiving,
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Negative impact on caregiver health,
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Sharing the burden,
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Worry about the future, and
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Caregiver coping strategies.
Introduction
Medical professionals must remember that they are not only treating the child with a disability, they are also treating the family. The diagnosis of a disability for their child is usually one of the most unexpected and life-altering revelations in a family’s life. It is the responsibility of the medical care professional to not only have the state-of-the-art understanding of the child’s diagnosis and treatment, but also to appreciate the impact and implications of this diagnosis on the family. There are over 6 million children in the United States with severe disabilities and nearly all of them are cared for at home.
There are a host of physical and mental health problems in caregivers of children and adults with chronic disabilities. The consequences of impaired caregiver health include recurrent hospitalizations for their children and the decision to place their child outside of the home.
- •
Seventy percent of mothers of children with physical disabilities have low back pain.
- •
There is a higher incidence of migraine headaches, gastrointestinal ulcers, and greater overall distress.
- •
Parents report more anxiety, anger, guilt, frustration, sorrow, social isolation, self-deprivation, and depression.
Murphy and colleagues, in an excellent review and utilizing a focus group methodology determined 5 themes that encapsulate the caregivers’ experiences:
- •
Stress of caregiving,
- •
Negative impact on caregiver health,
- •
Sharing the burden,
- •
Worry about the future, and
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Caregiver coping strategies.
Giving and getting the diagnosis
Getting the diagnosis of a chronic disability is obviously a life-changing event. Parents assume that their children will always be “normal” or developing typically. Many parents, of course, have already observed that their child is different from other children their age. They have sought medical care to help make the diagnosis. Diagnoses such as cerebral palsy, muscular dystrophy, and autism, for example, are not usually diagnosed at birth. Patients with obvious birth defects and congenital anomalies are diagnosed at birth, but the parents are anxious for diagnosis and prognosis. There is a different dynamic in diagnosing acquired disabilities, such as spinal cord injury and traumatic brain injury.
Antonak and Livneh describe the stages of a family’s response to the diagnosis of a disability. They suggested that there was a 3-cluster approach that involves 8 phases that often unfold sequentially:
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Early reactions of shock, anxiety, and denial;
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Intermediate reactions of depression, internalized anger, and externalized hostility; and
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Later reactions with knowledge and adjustment.
Within each of these processes, there are an additional 4 classes of variables: Those associated with the disability, variables associated with sociodemographic characteristics, and variables associated with physical and social environmental factors. It is therefore difficult as a diagnosing physician to determine what stage of acceptance of the disability that the family is currently in, as well as to understand the personalities of the family and the child. There are families who stay in a stage of denial for years, whereas others rapidly accept the facts before them and move on to the treatment phase. Sociodemographic factors can include the fact that men and women approach the same events differently. There are certainly many cultural differences affecting how a person approaches disabilities. Although complex, it is the role of the physician and the treatment team to ascertain where on this continuum the family lies.
Factors of parenting a child with a disability
Peshawaria in an unpublished presentation in 2000 suggests that there are several domains of parenting a child with a disability. These include physical care, health, employment or career, support in the community, financial considerations, social embarrassment, relationships of the child and the family, and the effects of the disability on siblings. Each individual child within each individual disability presents unique physical care challenges. Certainly a child who has a diagnosis of gross motor function classification system (GMFCS) level I cerebral palsy is completely different from a child with GMFCS level V cerebral palsy. A 2-year-old boy with Duchenne muscular dystrophy is also completely different from a 20-year-old boy with the same diagnosis.
Raising a child with a disability
Raising a typically developing child is difficult enough for most families. However, the parents of a child with a disability, in addition to being faced with the shock of the diagnosis of the disability itself, encounter a host of new challenges. The families are learning new medical terms, such as cerebral palsy, muscular dystrophy, necrotizing enterocolitis, and a myriad of concepts that are probably foreign to them. Agencies such as United Cerebral Palsy, the Muscular Dystrophy Association, the Spina Bifida Association, and other disability service groups can provide significant resources in the early diagnosis phase as well as throughout the child’s life. These groups provide education, support, and in some cases hands-on treatment. The family learns a new vocabulary of government agencies and programs with complicated acronyms, rules, and forms.
A newborn or any child with a medical problem can significantly impact the family dynamics. Parents are often forced to focus all of their attention on the child with a disability. This can lead to problems with the siblings and the family should be counseled to be aware of this potential problem. There are new financial burdens, such as durable medical equipment costs that may not be funded by the insurance companies, transportation costs, loss of 1 spouse’s income, extra child care costs, and many unfunded out-of-pocket expenses such as ramps for a wheelchair, alteration of bathrooms and bedrooms, and communication and computer device alterations and adaptations ( Fig. 1 ).
As the child ages and is in the primary school years, the family is faced with the same concerns as other typically developing families, as well as their own unique problems. What will their child do for leisure and recreation? How will they access technology? What are the mobility options available to their children? How will physical therapy affect their mobility and their quality of life? Is more physical, occupational, and speech therapy better? Why can they not have all of therapies for 1 hour, 5 days a week? Does their child need braces? What about a power wheelchair? How will they transport the wheelchair and is their home accessible?
What is the best educational plan for their children? How will they craft their child’s Individualized Educational Plan (IEP) to ensure that their child gets all that they need to succeed in school? Finally, the typical social relationships between children are usually affected by their child’s disability. While others are getting together for play groups, birthday parties, Little League, and soccer, families of children with disabilities often have to make choices between having more therapy or actually letting the child and the family rest from all of the other extra demands from school and therapy ( Fig. 2 ).
Models of medical care for children with disabilities
The health care provider can have a great impact on the situation depending on their approach to the family. Parents want their health care providers to provide them with information, or at least point them in the right direction to obtain the information. They want the provider’s expertise, empathy and respect, and, above all, they want to form a partnership with the provider to make decisions together to improve the life of their child and, therefore, their family. This does put some pressure on the health care professional to have the education and constant upgrading of their knowledge to best serve these families. The establishment of a partnership with the family can be a challenge at times because there are differences in style and needs, with some who are eager to be partners and others who may simply want to be told what to do.
This type of health care provision is called paternalism . This is the old-school method with the physician acting in the dominant and autonomous role as the arbiter of all knowledge. In this model, the patient and the parents are passive and dependent. Many of the older practitioners are only comfortable in this role.
Mutuality occurs when each participant has a unique role and responsibility. The relationship is consensual and there is a willingness to negotiate. This model is based on mutual respect and an acknowledgment of the different experience and understanding of each participant, as well as an expectation that each participant will benefit from the clinical interaction.
Family-centered care is the model toward which we should all aspire as clinicians. The Institute for Patient- and Family-Centered Care was formed in 1992 to investigate and promulgate the notion that families play a vital role in the provision of health care and well being of patients and families. The principles of family-centered care are:
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Recognizing the family as a constant in the child’s life;
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Facilitating parent–professional collaborations at all levels of health care;
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Honoring the racial, ethnic, cultural, and socioeconomic diversity of families;
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Recognizing family strengths and individuality and respecting different methods of coping;
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Sharing complete and unbiased information with families on a continuous basis;
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Encouraging and facilitating family-to-family support and networking;
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Responding to child and family developmental needs as part of health care practices;
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Adopting policies and practices that provide families with emotional and financial support; and
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Designing health care that is flexible, culturally competent, and responsive to family needs.
There are hundreds of articles extoling the benefits of this methodology of care delivery, but it requires a consistent effort to reach out to families to encourage their essential participation, an investment of money by the hosting organization, and an investment of time and commitment of the care providers to ensure that these principles are met. Glenn and colleagues demonstrated that the strength of the family really determined the stress of the mother. If there is a cohesive family unit, then there is an improvement in the parent feeling more in control and less stressed.
Team structures for caring for a child with a disability
One of the largest stressors for a parent is the number of appointments that they and their child has to attend. One could list almost all of the specialties in a pediatric hospital and the family may need to see 3 or 4 of them throughout the year. This is hard enough if the family is of more than moderate means and lives near the medical center or hospital, but can be a huge problem if the patient has problems with transportation and lives further away. The parent, and often the entire family, must spend hours traveling and waiting to see the physicians and therapists.
This method of seeing many different doctors on different days and often in different locales is often the standard of care for most patients. It is very efficient for the physician, because the patient comes to them. However, they may or may not have an office that is readily accessible and they may or may not have additional resources (nursing, social work, therapists, etc). With the advent of the electronic medical record, each of the specialists can read the note of the others and get a relatively good picture of what’s going on with the patient. This is the least efficient method for the family as they usually have to come in on different days.
In a multidisciplinary clinic, all of the specialties are centrally located, perhaps not co-located, but in close enough proximity so that the patients and family can see all of the physicians and providers in the same day. This requires a lot of care coordination and would not really be possible without the electronic medical record. Families do enjoy seeing all the people they need to see on 1 day, but if one of the services is delayed or running late, then the rest of the clinics’ schedules are thrown off and the family feels anxious. There can be confusion or conflicting opinion regarding treatment plans and options, and this is difficult for families as well.
Another model is interdisciplinary , where there are multiple disciplines together at the same time. Many spina bifida and muscle disease clinics use the model with the neurologist, the physiatrist, an orthopedic surgeon, and occasionally the urologist. There is usually a care coordinator with nursing staff and all of the other necessary services. Typically, the care coordinator, either in concert with each of the specialists or by reviewing the chart, develops a treatment plan based on recommendations from all of the specialties. This is among the most efficient clinics for the families because they only have to come once; however, the parents and the child can become very fatigued at the end of the day after repeated recitations of their story and examination of the patient. This is the maximally inefficient clinic for the physicians because the logistics of working around all of the specialties does not permit them to see as many patients at they would in the more traditional model.
Transdisciplinary models occur at places where 1 or 2 physicians perform the roles of several disciplines. For example, a physiatrist may have the skills to diagnose and treat various neurologic disorders, can handle the medication refills, can treat movement disorders, can order equipment and therapy, and can screen for surgical indications. There is a lot of efficiency in this model, but it does put the stress on the provider and takes the other specialties “off the hook.” Families often enjoy this type of care, but if the provider is not present, there is little knowledge of the patient in the system.
Regardless of the model utilized in the care of these patients, the basis for true collaborative care and effective treatment is good communication.
Basic structure for dialogue with the patient and their family
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Greeting : Do not ignore the child. Establish a connection by touching; attempt to make eye contact. Notice details about what the child is wearing or what is on their wheelchair. Acknowledge the parents and the extended family—often there are grandparents, other children, and other health care providers such as nurses or therapists.
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Prepare for Listening : Sit down. Look relaxed. Do not stand throughout the examination; use a chair to get to the eye level of the patient. Many children will have a communication board or device. Acquaint yourself with the patient’s mode of communication.
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Questioning : Use closed questions (yes/no; when did a procedure occur, what medications the patient is taking) for the medical history. Use open-ended questions when possible (“What is your biggest concern right now?”).
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Effective Listening is the first component of supporting the parents: Let the parent speak. Allow them to “tell their story.” This lets the parents feel known and understood. It gives them the opportunity for catharsis, insight, and perspective. It permits them to convey the life context of the illness, its meaning and interpretation, and voices their expectations of care.
Ten ways to listen better.
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Let the parent talk.
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Probe the hints that the parent drops.
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Offer facilitating remarks.
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Ask open-ended questions.
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Be reflective; the clinician does not have to know the answer to every problem.
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Check for accuracy.
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Determine the parents’ expectation for treatment.
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Practice legitimizing.
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Maintain eye contact.
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Ask “What else is on your mind?” before leaving the room. This can lead to a longer appointment than expected, but often helps to clarify and prioritize the patient’s and family’s needs.
Specific problems of a child with a disability
Feeding and Nutrition
Physical growth is one of the primary measures of health and well-being in children. Abnormal growth may be a sign of disruption in a child’s nutrition, environment, or health Decreased body fat and growth have been associated with increased health care utilization and decreased participation in society.
It seems intuitive to mention how important proper nutrition is to all aspects of a healthy life: Growth, muscle strength, respiratory function, cardiac function, neurologic function in a child who is already neurologically compromised, immune function, and wound healing, just to mention a few consideration. Malnutrition decreases the energy for discretionary activity, which is necessary for social interaction and school participation. Proper nutrition is also important for bone growth and health. Children with poor nutrition who also take antiepileptics and other medications are often osteopenic. These patients could have osteomalacia (lack of vitamin D) or osteoporosis from disuse and poor nutrition, or probably a combination of the two. There can also be endocrine abnormalities from the initial or subsequent brain injury. This can lead to fractures, which are both painful and alter the child’s ability to sit and, therefore, participate in life.
There are many factors causing malnutrition, but the one that impacts parenting the most is actually feeding the child. Although the nutrition of able-bodied children can be difficult, it is nothing compared with the challenges that a parent of a child with dysphagia faces. These patients have prolonged feeding times (sometimes >45 minutes per meal), delayed progression of oral feeding skills, and possible respiratory disease from aspiration. It seems logical to assume that, if the patient is having problems eating because of dysphagia, then the placement of a gastrostomy tube would solve those problems. However, Craig and colleagues, found that the introduction of the complexity of the technology and the tubing as well as the surgery actually increased the stress of the parents. They suggested that there is a greater, not lesser need for support of these families.
Sleep Disorders
One of the most common problems that parents relate is their difficulties with their child’s sleeping habits. There are many reasons for this. Sometimes it is just the fact that they child needs to be repositioned frequently, there may be a seizure disorder, or problems can be secondary to pain and muscle spasms. But often the issues are just secondary to the child’s own inability to sleep through the night. Newman and colleagues found that there was a 44% chance that there was 1 sleep disorder, but there was a 23% chance that the patients would have an abnormal total sleep score, indicating more than 1 identifiable issue. They also found that there were significant problems in patients who have visual disturbances because they do not sense the normal rhythms of the day and night.
Mothers also have a 40% chance of having sleep disorders themselves as well as a similar percentage of depression. Another study suggested that almost 50% of children with chronic disability have sleeping problems and this negatively affected the child, the parents, and the entire family.
There are so-called sleep hygiene measures to help with sleeping. These include:
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Avoid napping.
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Avoid stimulants such as caffeine.
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Exercise if possible.
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Do not eat right before bedtime.
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Obtain adequate exposure to natural light.
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Establish a regular bedtime routine.
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Associate your bed with sleep, not watching TV or listening to the radio.
However, these measures often do not work. There are many studies in the literature on the use of melatonin, and a study by Wasdell and colleagues in which there was a randomized, placebo-controlled trial of controlled release melatonin that seemed to demonstrate that this could be a helpful medication for the child and, therefore, the family.
Mental Health Challenges
There is an higher incidence of mental health and behavioral problems in children with chronic disabilities than typically developing children. However, there is a paucity of literature demonstrating this, despite significant evidence of this in most clinicians’ practices. There is some literature on the effects of having a child with a disability on the mental health condition of the parents, particularly the mothers.
Thirty percent of mothers of 270 children with cerebral palsy demonstrated depressive symptoms in a study by Manuel and colleagues. Nereo and colleagues found that the presence of problem child behaviors in children with Duchenne muscular dystrophy led to significant stress in the mothers. He found that this was similar to those mothers of children with cerebral palsy. These were more closely related to the mother’s coping with their children’s behaviors than it was with the demands of physical care.
Mental health issues combined with alcohol and drug abuse are a potential problem in parents of children with disabilities. The clinician must be aware of these potential problems and be willing to address them with some sort of intervention, which is usually accomplished by taking a careful history and just asking the right questions. Getting the social workers involved early may also help to pinpoint the problem so that the family member can get professional help.
Palit and colleagues presented a program in which they had parents who had older children with cerebral palsy and other disabilities counsel those parents who had younger children. This parent-to-parent interaction and support seemed to be therapeutic for both groups, if for no other reason than information was obtained and parents were less likely to feel as isolated and alone.
Cultural Influences
There is not enough room in this short article to discuss all of the differences in and the ramifications of culture on the family of a child with a disability. The family’s religion, hierarchical structure, nationality, and life experiences all contribute to the manner in which members of the family respond to the diagnosis, treatment, and ongoing care of a child with a disability. It is sufficient that the clinician be cognizant of the variety of cultural differences in coping, division of labor in the home, and even religious views of disability when caring for the child and the family.
Transition and Lifespan Issues
As the child grows older and becomes a teenager, not only are there changes secondary to growth, but many of the medical problems of childhood can worsen. For example, gastroesophageal reflux can become more troublesome and lead to increased tone. Patients can develop kidney stones from chronic dehydration. Skin problems such as ulcers are more problematic as the child gets heavier, and the skin becomes less elastic. The patient often requires orthopedic surgery for tendon lengthening, osteotomies, and, in the more involved patients, posterior spinal fusion ( Fig. 3 ).
Related posts:
Pediatric Rehabilitation
Common Complications of Pediatric Neuromuscular Disorders
Transition to Adult Care for Patients with Spina Bifida
Intrathecal Baclofen Bolus Dosing and Catheter Tip Placement in Pediatric Tone Management
Scoliosis, Spinal Fusion, and Intrathecal Baclofen Pump Implantation
Pediatric Limb Differences and Amputations
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