Psychological/Social Aspects

Living With Chronic Disease

Families perceive chronic illnesses in a variety of ways. Some can integrate their illness into their daily routine, whereas for others, it may be an insurmountable roadblock to normal life. Families should be allowed to define their own roles with the clinical team and responsibilities in a way that conforms to their beliefs. Roles within the family unit will evolve as the patients’ clinical condition changes and must be flexible.

The clinical environment, parenting, family disruptions, and coping were identified as major challenges in a study of children with chronic kidney disease. Parents felt traumatized seeing their children undergo invasive procedures and were overwhelmed with being both parents and caregivers. Caring for their child caused both spousal and sibling neglect, which led to family tension. Parents needed support and relied on their healthcare providers and other parents to help them cope.

All families are challenged by their child’s needs, and chronic illness has a profound impact on the well-being of all family members. Daily routines become more complex and may be centered around the needs of the chronically ill person. Encouraging families to articulate their goals and concerns may provide key information on how to intervene more thoughtfully and respectfully with families.

Preparing the Child for Transplant

The most common indication for pediatric liver transplant worldwide is biliary atresia, and the majority of these patients are transplanted as infants or young toddlers. Therefore their capacity to understand what is happening is limited by virtue of their age. It is important to create a familiar and comfortable atmosphere in the hospital and allow family members to be with them as much as possible.

Preschool-age children may benefit from some teaching about their condition; remember to use simple words and explanations. When discussing an upcoming transplant, consider the child’s age and maturity level. Children are more likely than adults to believe their illness is a punishment caused by their wrongdoing; assure them they are not at fault. The transplant team should answer any questions truthfully but should not overload the patient with too many details. Simple pictures explaining what will happen may also be helpful. Adolescents in particular tend to rely on their own social networks, and they should be encouraged to talk about their upcoming surgery with their peers for support. When appropriate, classmates and friends can write/visit to maintain communication. It is important that patients are informed of support and resources in their language and geographical area. Electronic resources are easily often accessible, and the transplant center should steer patients toward reliable information that is relevant to their disease. Because of the rarity of these diseases, online social networks have created an opportunity to allow families worldwide to connect and share information with each other.

Referral

Referral to transplant indicates a shift in the level of care. Families with children who have chronic liver disease may have already suffered psychosocial and cognitive sequelae. They are accustomed to coping with a life-threatening disease and may view transplantation as a chance for a fresh beginning or the end of attempts to manage a progressive and chronic medical condition. Children who develop acute liver failure have to cope with the other end of the spectrum. Previously healthy, these families and their children must navigate a complex medical system that often requires urgent and invasive medical interventions. They may have to proceed with treatments that they do not fully understand and readjust expectations of their future. Because the majority of LT are performed in children with chronic illness, it is thought that families will have some level of familiarity with the medical system. However, the need for surgery, meeting new providers, and requirements for listing, including insurance approvals, may cause significant stress on an already stressed family system.

Despite an increase in the number of solid-organ transplants performed, the majority of patients are unaware of all the complexities of the transplant process. There are little data on how to initially refer a patient for transplantation as a treatment alternative and even less data on the parental/patient reaction to such news. Lang et al. interviewed parents of children who were referred for lung transplantation for cystic fibrosis. The parents recommended discussing transplant before a medical crisis point, providing as much information in a gradual manner and finally providing written handouts because it was difficult to remember all the information provided.

Transplant teams usually follow a well-defined script when delivering information regarding the transplant process to patients and families. They should be clear that LT is an intervention that extends life but is not a cure. It transforms the patient from a terminal illness, not to perfect health but to a health state requiring lifelong follow-up and medication. This concept may be more familiar for patients who are already in a chronic disease state, but for patients with acute presentations, the idea of extending life may be novel. Long-term risks must be stated at the outset, such as infections, organ rejection, PTLD, and complications from taking immunosuppression.

The transplant team must be aware of the different stressors and should ideally individualize their approach based on the unique needs of each family. The social and psychological impact on the child and family will vary based on disease type, chronicity, individual and family functioning, and outcomes from previous therapies. The transplant team must make ongoing assessments of family stress and provide resources to families to combat or adapt to new situations.