Families of Children with Chronic Conditions: Opportunities to Widen the Scope of Pediatric Practice
Article Outline
Abbreviations: FCS, Family-centered service
Biomedical training is built largely on acute-care models. Imagine being asked to assess a 50-year-old man in the emergency room with chest “discomfort.” The paradigm by which we are expected to operate is to “rule out…” various diagnostic possibilities and cone down on the specific biomedical problems and their management. Making the right diagnosis (“Is this a cardiac, digestive, pulmonary, muscular, psychogenic… problem?”) is clearly an essential prerequisite to providing the correct specific management, most obviously in those situations in which there are close connections between “diagnosis” and “treatment.”
See related article, p 320
In contrast, in child health, especially in nonacute conditions such as chronic illnesses, we need to expand and perhaps reverse this classical notion to one of “rule in…” all of the relevant elements of a child's predicament, to provide a sound plan of counselling and management, as well as specific treatments. In this context, I have often felt that our language needs a new term, “childandfamily,” to remind us of the essential role of family in all aspects of the lives of the children and adolescents whom we serve, and particularly those whose lives are “complicated” by chronic conditions. How well do we “rule in” the issues that concern parental well-being?
In this issue of The Journal, Bourke et al1 highlight why this broader perspective is essential in all aspects of pediatrics. The authors systematically explored the physical and mental health and well-being of 250 mothers of young people (under age 25 years) with Down syndrome. They found significantly poorer mental health among these mothers. They also were able to identify several important child and adolescent factors that moderated parental vulnerability.
A sad legacy of our classical medical training is that too many people feel a sense of pessimism or even futility in working with children with chronic (especially neurodevelopmental) disorders.2 One response to this myopic view of our role in child health involves an understanding of the power of family-centered service (FCS)3 and the importance of its universal application in child health. The link between parents' experience with FCS and their satisfaction with the services, their mental health, and the stress that they experience in dealing with our system has been credibly and repeatedly demonstrated.4 It seems self-evident that these outcomes will have some effect on their children.
The report by Bourke et al reminds us of the potential impact of long-term problems of child health or development on the parents (see also the report by Murphy and Christian5). Thus, it must be argued that to the extent that we care about child health, we must be concerned with the family's “environment” and well-being. Such attention does not mean that we must all be social workers (although any good pediatrician clearly uses many of these skills daily)—but it does imply that our programs for managing the health and well-being of children with complicated lives must be attentive and responsive to the challenges faced by these children's caregivers.
One particular finding of Bourke et al—the role of behavioral issues as a significant determinant of maternal mental health problems—echoes observations from studies in which I have been involved.4, 6 In our studies with several hundred children, the behavior “problems” identified were all at levels below what constitute “thresholds” for referral to a mental health program. They are what many of us would characterize as the “ordinary stuff” of parenting. What has not been well explored, however, is whether these issues are necessarily exaggerated in children with developmental disabilities (an issue discussed by Bourke et al), or whether there is perhaps a sense of determinism and pessimism in both parents and professionals that this is how “these children” are, and we are powerless to prevent or intervene.
I have often speculated that when development is slowed or made complicated by developmental disabilities, parents are likely to experience each developmental stage for a longer period compared with when the pace of a child's development moves at an average speed. I also wonder whether managing a disabled child's behavior is made more difficult by uncertainty about the “right” things to do in a child who already has “problems.” This has led me to wonder whether part of what should be offered to all parents of children with chronic conditions is a brief series of sessions to provide anticipatory guidance about parenting a “special” child. I would offer these sessions for parents of 2-year-olds, who are already notoriously challenging creatures! The focus would be on the “CPR” of behavioral guidance: consistency (of parenting across people and situations), prevention (avoiding very challenging situations when a child is not ready to face them), and reinforcement (of good behavior). There is nothing original in these ideas, except that we may too easily forget their importance when so much emphasis in placed on the “treatments” associated with the developmental disability components of children's and parents' lives.
A final observation, prompted by the report of Bourke et al, concerns the relatively good news that maternal mental well-being seems to improve with age, although the early teenage years appear to provoke the highest stress (an observation most of us who have travelled this road with adolescents will recognize). Once again, by being aware of these patterns and of the temporally related challenges of transition to adulthood,7 we may be in a position to anticipate these stresses and mount community-based programs to prevent these developmental challenges from overwhelming parents.
The research challenges are legion, but the opportunities to make a difference for children and families with complicated lives are even greater. We thank Bourke et al for providing another stimulus to action.
References
- Maternal physical and mental health in children with Down syndrome. J Pediatr. 2008;153:320–326
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- . Family-centred services: a conceptual framework and research review. Phys Occup Ther Pediatr. 1998;18:1–20
- . Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol. 1999;24:41–52
- . Disability in children and young adults: the unintended consequences. Arch Pediatr Adolesc Med. 2007;161:930–932
- The health and well-being of caregivers of children with cerebral palsy: what are the determinants?. Pediatrics. 2005;115:e626–e636
- . Commentary: perspectives on transitions: rethinking services for children and youth with developmental disabilities. Arch Phys Med Rehab. 2007;88:1080–1082
PII: S0022-3476(08)00273-4
doi:10.1016/j.jpeds.2008.04.010
© 2008 Mosby, Inc. All rights reserved.
Refers to article:
- Physical and Mental Health in Mothers of Children with Down Syndrome , 24 April 2008
