Medical care advances have dramatically reduced pediatric morbidity and mortality - from formerly premature infants with severe chronic lung disease requiring supplemental oxygen and assisted ventilation, through to adolescents with treatment-refractory epilepsy or myriad other medical conditions - while creating new challenges for children and families [1
]. In the United States, approximately 13 to 20% of households have an infant, child, or adolescent with a special health care need (CSHCN) [3
]. The mounting dependency on medical technology, reliance on multitudes of medications, and intense use of medical services place increased demands on parents. At the same time, parents must also navigate the complicated systems of health insurance and childhood education, while attending to other responsibilities including maintaining their own mental and physical health and that of their families, and wrestling with the larger existential questions posed by their child's illness.
While these dimensions of the experience of illness or disability are often referred to as "caregiving" or the "burden of care", the phrase "work of care" (WOC) specifies the physical and mental efforts of specific tasks in which parents engage, while avoiding the conflation in the term "caregiving" of both a person who is a caregiver and a set of actions that constitute caregiving, and the negative and potentially biased emotive connotations of "burden". While physicians, nurses, and the broad health care system are certainly important to the health and wellbeing of CSHCN, and at various times during a child's life (such as during a hospitalization) may share in performing the tasks involved in caring for the child, the WOC is chiefly performed by the patient and family. Parental WOC is too often an overlooked component when assessing the quality of care structure, processes, and outcomes for CSHCN [4
]. In 2003, an Institute of Medicine Report identified 7 key processes of care for CSHCN: care planning, use of preventive services, access to specialists, ancillary services, mental health and dental services, and care coordination [5
]. The report failed to address, however, the cumulative and interrelated effects of these processes - which is to say, how the WOC operates within a multi-component dynamic system.
To synthesize and extend our current understanding of the parental WOC for CSHCN, we created a conceptual model via a systematic review of the published literature, aiming to provide a representative synopsis of both empirical findings and perspectives, which can then be used to "clarify, describe, and organize ideas" about how to improve the quality of care for CSHCN [6
]. As an initial point of entry into the topic, we located the WOC concept at the intersection of the theoretical frameworks of the sociology of work[7
], the psychology of coping [8
], and the emerging field of complex systems [9
]. Taken separately, these frameworks pose interesting and important questions, such as: Why are certain tasks identified as valuable and others are not, and why are specific tasks assigned to specific persons? How do people cope with stressful life events, and how do they use resources in other areas of their lives to do this? How do people's responses to events shape, in ways both predicable and unpredictable, future events? When combined, a conceptual model synthesizing these three frameworks both specifies the tasks inherent to the WOC while sketching an integrated model of how the dynamic WOC system operates as parents attempt to mount an adaptive response to the challenging circumstances of parenting a child with special health care needs.