How Can I Best Prepare My Child For Constant Medical Interventions and Hospitalizations?
I don’t know how to make it better…
Fortunately, over the past few decades, there have been substantial decreases in childhood mortality across all childhood diseases, resulting in a large number of pediatric survivors of illnesses that children previously largely did not survive. And as the survival rate of medically complex infants has risen significantly, there are many more children with chronic illness than was the case in the past, so we need to ensure that these children are properly supported.
Unfortunately, there has been less support for those with chronic medical conditions in rural/low SES/minority communities and a lack of access to mental health care or proper medical insurance, which can make chronic illness outcomes and quality of life worse. Although access to quality health care and and high-quality developmental preschool programs have been shown to make a significant difference in cognitive outcomes, unfortunately, it has been much harder for those of lower SES and rural backgrounds to access these programs. ~15% of children with chronic health conditions had been hospitalized by the start of kindergarten and 30% were hospitalized without a formal diagnosis of their chronic condition. As a result, children with medical conditions from birth have reduced school readiness scores because of cognitive effects and/or missed opportunities for learning and socialization because of frequent medical appointments/hospitalizations. Children with chronic illnesses are at higher risk of developing difficulties with behavior, communication, and social interaction. Those with chronic illness also have higher rates of ADHD, ASD, and Learning Disorders. Those who do have the ability to access assistive technology, special equipment, and community-based services impact independence and QOL significantly as well.
In fact, 19% of Americans with chronic illness were unable to receive medical care needed because of cost barriers, while, in contrast, in Canada (where there is socialized health care), only 1% of adults with chronic illness were unable to receive medical care because of cost. Moreover, ~10% of families have spent a minimum of half their life savings on medical bills in the first 2 years because of out of pocket treatment, and ~62% of families with a medically complex child are in medical debt. So this is why the proper supports for these children and their families are so critical in terms of developmental outcomes.
Despite their (generally) good intentions, many doctors struggle to understand the experience of patients, even when well-meaning. And when doctors don’t believe your pain or properly diagnose you (or your child), you lose trust in the medical system. Most people who have a chronic illness do not have only one medical condition (e.g., severe allergies and asthma, celiac and crohns). In fact, there are several medications/interventions that can result in you feeling even sicker or causing additional problems. Some have felt as thought they are nothing but an “interesting medical case” to others and do not feel seen.
Many have actually expressed that the emotional side effects of chronic illness are worse than the physical. For example, grieving of a self/body that may never be the same and struggling with rejection from peers and feeling different. Some children experience significant differences in their physical appearance which then causes emotional distress (wheelchair, weight loss, hair loss, swollen etc). Many children will attempt to hide their illness or pretend everything is okay so they can participate socially and not feel weird/needy etc. Some children may feel they did something wrong or sinned to deserve their illness. Many have described experiencing excessive consoling by others, which makes them feeling uncomfortable or responsible for others’ negative feelings. Some will receive “thoughts and prayers” or hear things like “you’re so strong” or “everything happens for a reason” which can be frustrating and invalidating. Being called “inspirational” does not always feel good, as there is no actual choice being made. Many children also feel invalidated by people (especially adults) who do not understand “flare-ups” because they have seen the child as “normal” much of the time so they must be okay. So not surprisingly, there are also higher rates of emotional disorders in those with physical limitations/complexities, especially with the compounding factor of limited resources. Because of this, Panic disorder, anxiety, depression, PTSD (med based), OCD, and eating disorders all common in those with chronic health conditions.
In terms of the experience of long-term or chronic hospitalization, these children have a 12% higher risk than non-hospitalized children, in terms of developing an emotional disorder. Additionally, studies have demonstrated higher levels of both internalizing (e.g., anxiety) and externalizing (e.g., aggression) behaviors, especially when prescribed corticosteroids or other medications that alter mental/emotional functioning or when missing opportunities for typical socialization due to health/hospitalization. They often experience isolation and loneliness in hospital. Children may have to face death or fear of affecting others lives because of their illness or potential death. Not surprisingly, the more complex the case, the higher risk of mental disorder and the areas that most affected quality of life was family discord/stress, and inability to participate in school/sports/hobbies.
Not surprisingly, any invasive or unexpected medical procedure can be especially traumatic for those with fear of needles or doctors. Up to 25% of those who experience a significant medical event experience illness-induced PTSD. Additionally, there is a strong association between ICU stay and PTSD, depression, and anxiety. In fact, placement in ICU results in 5x risk for PTSD, highest risk in adolescent females because of parental separation, disturbed sleep, day/night reversals, constant noises, painful procedures, strangers taking care of you, unable to communicate, loss of privacy and constant touching, and side effects of meds. The prevalence of post-traumatic stress following hospital admission in children ranged from 35-62% and anxiety ranged from 7-40%, which are both associated with poorer quality of life and increased health care utilization. Interestingly, children who were previously healthy and developed a chronic illness later in life have higher rates of emotional disorders than those who are chronically ill since birth (perhaps due to less resilience, lack of habituation).
From a physical health perspective, when children are in the hospital they are more vulnerable to other illnesses that other may never be exposed to because of hospital/rehab stay. Many experience inconsistent sleep patterns, acute or chronic pain, and fatigue, which can exacerbate cognitive and behavioral problems. Additionally, there is an increased risk of developmental delay with increased hospital stay. More specifically, there is a 1.5x increased risk for those with at least 7 hospitalizations and longer than 2-week stay and most experience delays in communication, physical development, and social-emotional development, which is critical when you remember that emotional and behavioral difficulties during preschool/early elementary years are predictive of learning outcomes later on.
Aside from the children affected, what is the potential impact of the whole family unit?Some parents/caregivers may have to quit their job, relocate, refinance etc. just to pay medical bills and receive appropriate medical care. Many parents spend a significant amount of time fighting with insurance, which can cause stress on whole family system. Another source of stress can be the coordination of treatment schedules and medication/supply management. It can also be challenging for parents/families to accept help from others, as they may feel ashamed or guilty. It may also be heartbreaking for parents and children when provided with false hope of cure and/or new treatments, especially if a treatment only works for a short period of time. Often times parents’ levels of stress and quality of life is actually worse than their children who are suffering from the chronic illness, and siblings often struggle as well because of disruptions to routine and family life and worry about sibling. Additionally, as children age, some parents may unintentionally make an older child with chronic illness feel like perpetual child, as they may be overly concerned and protective, while other parents may be unintentionally dismissive and invalidate child’s experiences. On the other hand, some children with chronic illness dread turning 18 because they know they will be responsible for their medical decisions, dealing with insurance, payments etc.
While we may not be the ones who are capable of solving for a child’s physical health, there are several things parents and providers can do to support a child’s emotional health and overall quality of life. For parents, try to give your children choices even about tedious things so they have some semblance of control. You can decorate hospital/rehab environment with things from home: towels, sheets, laundry and other fun/positive items. Try your best to bring fun and humor into the situation whenever possible. It may be helpful to make “saying yes” a priority because you may have to say “no” to your child more than you expected in the coming years.
It is important for child to be allowed to feel angry and fearful, important to acknowledge both grief and gratefulness and embrace flexibility. It may be helpful to ask your child how you can help or support them, make them feel safe, empowered, comfortable and what bothers them or causes worries. As much as is possible, try to keep things as normal as possible for other children while acknowledging seriousness of the situation. It can be helpful to assist child in answering questions about their illness to peers, teachers and family members. It is often comforting to communicate with others who have similar lived experiences and can appreciate the unique experience and nuance of little things. At the same time, it is also important for the child and family to know that just because someone has the same diagnosis or other similarities does not mean they will have the same outcome. If parents can find hope, support, and strength to give to their child, significant benefit for their child, but incredibly hard to do, especially without financial and psychological support. Strong social networks have been shown to be very protective of mental health, increased resilience, independence, and coping strategies.
More practically, you can prepare children for the frequent interruptions during the night and lack of privacy. There are many products recommended by medical families that can make transition to hospital easier (e.g., wagons for transport of items, collapsible items, cupholder for IV etc.). Try to support and nurture relationships between yourself, your child and the hospital staff. Try to explain all procedures and tests to your child on a developmentally appropriate level with appropriate terminology. There are never too many questions for the medical team. It is often helpful to create a list of symptoms and detailed history for any new doctors or medical professionals- make sure you request and hold onto all medical records. Doctors who show care and respect and take time to explain to their patient have made most significant difference in outcomes mentally and physically- having the right diagnosis can make a child feel significantly validated. Keep in mind that teaching hospitals are often more equipped to deal with unusual, complex, or chronic conditions. Consider using a child life specialist (help kids to navigate illness and hospital stay), social workers and case managers for support and ideas. Some treatments or visits can be done at home, even without significant financial burden, Children who are able to receive treatment at home vs. hospital have significantly higher QOL scores. Don’t be afraid to get second opinions but also accept when there is consistency in information. Consider requesting a patient advocate if necessary if do not agree with medical care/plan.
In terms of more clinically-based or specific interventions, proper pain management is important for children in terms of mental health outcomes, quality of life, and prevention of self-medicating. Service/emotional support animals can be life-changing for some children in terms of medical protection and companionship (research supports decreased complications in children with a service animal). Support from a family systems or health psychologist can be very helpful for some as studies have down that family psychosocial interventions improved mental health and quality of life of chronically ill children, can be done virtually which may be very beneficial to medical families. Parent-child interaction therapy can be delivered bedside and is evidence-based and be tailored to the individual family. Both Stepping Stone Triple P and Acceptance and Commitment Therapies were found to be beneficial for parents/families according to a Randomized Controlled Trial. There is also some evidence to support possible virtual reality therapies for children in a hospital setting via Artificial 3-D simulated environment, which can be cost-effective for stress management and mood improvement in the hospital setting, can lead to reduced stress, increased feelings of control, distraction from their current experience, but effects may be short-lived. Keep in mind that medically complex children require tailored and specific assessment approach for children with chronic illness, especially with physical impairments and you need to make psychological interventions age and developmentally appropriate.
It may be helpful for parents, siblings and/or the child with chronic illness to join a support group for their specific illness. Illness-specific camps can be very helpful for children and/or their siblings to create deeper, meaningful connections with peers. Other helpful resources include: Angel flight, Rally foundation, Tough2gether, St. Baldrick’s foundation, B Brace, The Assistance Fund, First-hand Foundation and many others that assist with grants, support, and information. More information related to books, podcasts, foundations, grants, products, and specialized camps are available on The Neuropsychlopedia website.