Wellness for Families of Children With Chronic Health Disorders

Abstract

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 VIEWPOINT

Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families

“…8 Behavioral health can strongly influence health and wellness outcomes for all children and especially for CYSHCN. 36 Reviews of the literature have shown that children with chronic physical health and developmental conditions are at an increased risk for having co-occurring mental health or behavioral problems or conditions. 37,38 Internalizing problems and conditions, ranging from low self-esteem and worry to depression and anxiety, can occur in CYSHCN.…”

“…Such associations may be explained by biological causes, such as inflammatory processes with asthma or diabetes, and psychological causes, such as the stress of living with an adverse and potentially lifethreatening condition. 36,41,42 Studies in adults reveal that comorbid mental and physical illnesses can result in more health care service needs, functional impairment, and higher medical costs compared with similar physical illnesses without the co-occurring mental health condition. 43 Fewer studies have been conducted in children, but 1 study suggests that mental health encounters may encompass a large proportion of outpatient use for some CMC.…”

“…44 A focus on psychosocial factors and wellness would appear to be an important addition to the overall chronic care model for CYSHCN. 36…”

Assessing psychosocial risk in pediatric cystic fibrosis

“…Given most children with CF are now identified through newborn screening, medical assessment and intervention can be initiated proactively. Similarly, we have the opportunity to attend to psychosocial factors proactively to promote positive outcomes early in life, foster family wellness, and attend to conditions and situations that adversely impact the daily management of CF . Suboptimal CF regimen adherence rates highlight the need for identification of barriers to daily care to provide proactive targeted psychosocial intervention.…”

A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions

“…8 But as my colleagues and I have noted, "Pediatric chronic care medicine must more effectively deliver interventions that promote family wellness and resilience." 9 This effort will depend on recognition of need and full participation by pediatricians and will be most effective if conducted in an interdisciplinary setting that prospectively attends to the behavioral dimensions of health for the child and for the entire family.…”