LAUSR

Caring for children with a life-threatening or disabling chronic disorder is a challenge that affects, often adversely, the entire family. The prevalence of severe disabilities among children is increasing,1 with approximately 1 of 20 children having a severe disability.2 As this group has lived longer, filled more of the beds in children’s hospitals, and demanded increasing ambulatory medical attention, costs of care have increased. Costs to families have also escalated both economically and with regard to socioemotional development. Current child health systems have responded vigorously to the physical health challenges of chronic childhood disease but less consistently to the challenges of proactively supporting the wellness of patients and family members. Pediatric chronic care medicine must more effectively deliver interventions that promote family wellness and resilience. Disabling chronic disease can be viewed constructively as a serious adverse experience that is unrelenting for many patients and families. A recent international, multicenter study of parents of children with cystic fibrosis determined that 40% of mothers and almost 30% of fathers had elevated symptoms of anxiety and depression during the 3 years after diagnosis by newborn screening.3 Divorce, substance use, and other health problems in family members also interfere with family life and the ability to meet care needs of a child with chronic disease. Maintaining daily treatment regimens is overwhelming for many, particularly if they lack key executive functioning skills, such as organization, and the emotional and behavioral stamina to adhere to prescribed regimens. Lack of social support and economic resources magnifies the level of stress and ability of parents to respond to family and patient needs. Chronic care teams are often interdisciplinary and have the expertise to address a broad spectrum of family needs. However, the usual care model reacts to problems, whethermedical,emotional,orsocial,anddoesnotinclude a proactive focus on patient and family wellness. Introduction of the importance of family wellness at the time of diagnosis is not a routine component of care. Quality of life and health for all members of the family is not often prioritized as a target for care team interventions. Families of children with chronic disorders can be given tools for managing persistent or frequently recurring stress. For example, relaxation and mindfulness training have been shown to be effective, can be taught to parents and children, and have been used as an effective intervention to manage stress.4 Brief interventions that can be used in a timely mode in the home, work, or school setting are most likely to be helpful and sustained. Screening patients and family members for anxiety, depression, and other behavioral problems and providing behavioral support in chronic care programs directly or by referral can be extended in the current care model to identify and respond to risks for problems and to early subclinical problems. Promotion of essential parenting skills is increasingly recognized as effectively delivered in the health care setting5 and is as applicable in subspecialty as in primary care. What dimensions of family life might be addressed with wellness promotion and behavioral health risk prevention? Insufficient and/or poor sleep is well recognized for families of children with chronic diseases. Studies of parents of children who are receiving mechanical ventilation at home show a high rate of parental sleep deprivation, and parents of children with common conditions, such as eczema and asthma, also may often be sleep deprived.6 Reasons for inadequate sleep include nocturnal awakening by disorder symptoms, erosion of parent sleep time by care needs of the child, and factors such as worries about health, finances, or other family problems. Assessment of individualized need and interventions for family sleep deficits have potential for enhancing family quality of life and health and improving family coping capacity. Other dimensions of family life should also be considered in the chronic care model. Physical activity can be promoted using family-focused guidelines or programs to improve stamina, sleep, and strength. Nutrition is often neglected as the result of inadequate time, money, or energy to prepare wholesome meals and can be addressed by dietary counseling and instruction on healthy food preparation and establishing mealtime routines. School attendance and performance of children with chronic illness can also be a source of family stress and should be monitored by members of the health care team who can facilitate school accommodations that meet the health, academic, and social needs of the child. Siblings frequently receive less attention, especially during acute illness periods, and their cognitive and behavioral health is important to monitor. Positive wellness outcomes are likely to be achieved by creating a mutually respectful partnership between health care professionals and family. Creation of evidence for feasibility and effectiveness of wellness-promoting interventions will be essential. Outcomes must be compelling because addition of another component to the long list of targets already addressed in the chronic care model is likely to encounter resistance. Both initial acceptance and willingness to sustain these activities will be based on early perceptions of benefit and convincing evidence in outcomes studies. Evidence of cost-effectiveness will also be required to justify payer support for the inclusion of wellness in the chronic care model. As bundled, value-based payVIEWPOINT