Journal Issue: Work and Family Volume 21 Number 2 Fall 2011
Parents: The Central Hub of the Child Health Care System
Children occupy a special position with respect to health care. Few other populations are as dependent on others for their health care. Because of this dependence, a societal obligation is attached to the parents (or parent substitutes). Whether the care is preventive, acute, or chronic, parents are simply expected to be there, and many of the processes of care have been arranged based on an assumption of parental presence.
Parent Responsibilities during Outpatient and Emergency Visits
It may be easy to forget the myriad background duties expected of parents during something as seemingly simple as an outpatient visit. Parents are responsible for scheduling the visit. They are responsible for arranging transportation. In most offices and emergency wards, parents are responsible for filling out all the necessary paperwork, displaying proof of insurance, and handling co-pays. Parents are expected to entertain or otherwise supervise their children while waiting, sometimes for hours, first in a waiting room and then in a patient room. They are expected to provide most or all of the relevant historical information to clinicians and to assist clinicians in the gathering of additional data, including talking with their child, comforting him or her during examinations or procedures, and helping collect urine or other samples. They are expected to work with clinicians to develop appropriate health care plans, to learn how to execute these plans at home, and to ask any and all necessary questions before leaving. They are then expected to arrange follow-up appointments, fill pharmacy prescriptions, follow through on lab requests, and provide or arrange for transportation home.
Typical clinician offices, clinics, and emergency wards are completely unprepared to act as surrogates for all or even most of these functions. The current outpatient and emergency systems of health care for children would simply fail to operate without either consistent parental presence or a massive investment in additional staff trained to act in loco parentis.
Hospitalizations: Parents as Communicators, Care Coordinators, and Safety Monitors
On the surface, hospitalizations might seem to provide parents with more scheduling freedom than outpatient or emergency ward visits. Technically, hospitals are required to provide round-the-clock care and supervision for their inpatients. In reality, however, although parent responsibilities shift, they diminish only in certain aspects and often increase in others.
Because many inpatient clinicians care for multiple patients simultaneously, communications are notoriously difficult, limited, and haphazard. Parents often need to spend an entire day waiting in their child’s room for a chance at one unscheduled five-minute conversation with a physician. During this conversation, parents must be ready to engage fully with the physician in understanding the current clinical status and the anticipated course of illness, ask all the questions they might have, and participate in important health care planning on behalf of their child.
But such planning is only the beginning in an environment that, at the best of times, is confusing and haphazard. A parent who is able to speak with multiple clinicians is likely to find different clinicians saying different and sometimes contradictory things based either on legitimate differences of opinion or on incomplete knowledge or communication. In such instances, parents are often treated as valuable sources of information and care coordination among various clinicians. Moreover, the clinical course of children in the hospital is enormously dynamic. Diagnoses, planned tests and treatments, and prognoses change, sometimes multiple times during a day. Tests are delayed, surgeries are canceled, and emergency situations unfold, often without any timely explanation or warning. In the worst situations, mistakes are made, and mistakes occur frequently.23 Even with fully staffed nursing and ancillary support from volunteers and child-life specialists, most hospitalized children spend most of their day with no health care professionals in their room. In such a setting, health care staff fully expect parents to act as an additional, and sometimes essential, line of supervision and safety for their children.
Hospitalizations: Parents as Parents
In addition to fulfilling communication and supervisory roles, parents are also expected to provide emotional support and assistance in ways that health care professionals are simply unable to do. Hospitalized children are often frightened and dependent upon the presence and comfort of their parents. Health care providers often need parents to help their children submit to tests or therapies. This reliance on parental assistance represents a significant shift from hospital policies through the first half of the twentieth century, when parental visiting policies were extremely restrictive.24 For example, an 1896 policy at Children’s Hospital in Boston stated that parents were permitted to visit their children for one hour one day a week (figure 2). This approach to parent visits generally persisted in the United States into the mid-twentieth century.25 By the 1960s, however, daily visiting hours had become standard in U.S. hospitals, and by the 1980s, overnight visits had become commonplace— in 1988, 98 percent of hospitals with pediatric residencies allowed parents to stay with their children twenty-four hours a day.26 This shift was at least partly influenced by a growing body of literature suggesting that child and parent anxiety and emotional distress during hospitalizations may affect how well children recover from their illness.27
Family presence during health care procedures decreases anxiety for the child and the parents. Allowing a parent to be present for the induction of mask anesthesia, for example, may minimize the stress pediatric patients experience undergoing a surgical procedure.28 A study examining whether parental presence during venipuncture altered self-reported distress of the child and parent found that, in the group with parents present, distress scores were lower for both parent and child than they were in the group with absent parents.29 Another small study was conducted to determine whether allowing parents to be present during invasive procedures reduced the anxiety that parents experienced while their child was in the pediatric intensive care unit, to evaluate whether the parent’s presence was helpful to the child and parent, and to determine whether the parent’s presence was harmful to the hospital staff. Parental presence significantly reduced parental anxiety related to the procedure. Thirteen of the sixteen parents found their presence helpful to themselves, fourteen found their presence helpful to their child, and fifteen would have repeated their choice to watch. Fifteen of sixteen nurses found parents’ presence helpful.30 Even in critically acute situations, parental presence has not been associated with negative effects on care. A prospective trial showed that family presence for pediatric trauma patients did not prolong the length of time before CT imaging was performed or resuscitation was completed.31
Parental presence immediately before and after surgery has also been associated with better outcomes. In a randomized controlled trial evaluating the efficacy of family-centered preparation for surgery (that is, using enhanced presurgical parent-child engagement techniques), parents and children in the family-centered care group exhibited significantly lower anxiety before and during induction of anesthesia compared with other groups.32 Another study found that children whose mothers were involved in their post-tonsillectomy care recovered faster and were discharged earlier than children whose mothers did not participate in their care.33 Likewise, a series of quality improvement studies found that children who had undergone surgery cried less, were less restless, and required less medication when their parents were present and assisted in pain assessment and management.34
Parent Responsibilities during Care at Home
The communication, coordination, supervision, and emotional support that parents are expected to provide during outpatient and emergency visits and hospitalizations are no less pressing when their children are at home throughout their illness, at home after hospitalization, or at home receiving long-term care. For some tasks—particularly supervision—expectations are often greater at home than they would be in a traditional clinical setting. Parents must also take on the added responsibility of providing most or all of the actual health care services the child needs while at home.
Even for otherwise healthy children, health care services can be substantial and complex. For the growing number of children with serious chronic illnesses, however, parents now provide not only medications, but also oxygen, respiratory treatments, feeding-tube care, intravenous nutrition, physical and occupational therapy, and developmental and behavioral interventions, absorbing an ever-growing portion of health care responsibilities through what amounts to generally unacknowledged shadow care. Since the 1990s families whose children are dependent on technology for their care have also become—initially with home health assistance but now often unassisted—operators of complex and expensive devices such as feeding pumps, suction machines, dialysis machines, or ventilators that were previously restricted to inpatient settings.35
A study of families with technology-dependent children found that while the children’s health and quality of life benefited from the technology, the time demands of the care routines substantially limited the family’s participation in school, employment, and social life in general.36 The need to use certain medical technologies at night also meant that many family members suffered regular disruptions to their sleep.
The study showed that care related to the devices (or “technical care”) was provided mainly by the children’s parents, particularly mothers, with varying levels of support from other family members (mainly fathers and older siblings) and formal service providers. Parents and other family members also provided both a large quantity and a wide variety of personal, practical, and other types of care linked to the child’s medical condition, in addition to the kinds of care associated with parenting in general.
The technical care involved a range of activities—assisting the child when she or he was using a device; monitoring the child with close visual observation, monitoring devices, or both; managing the equipment (cleaning and preparing it for use, ordering supplies, and managing stocks); maintaining the interface between the device and the body (care of entry and exit sites, placement and replacement of tubes); obtaining technical support from service providers (including hospitals, community services, and companies that supply equipment and consumables); providing technical support to other caregivers through formal or informal training; and preparing equipment for use by other caregivers. These medical tasks had to be performed following strict protocols by parents or other informal caregivers who had been trained in how to manage the devices.
The Parent Burden of Child Illness
By routinely accepting such intensive responsibilities in order to care for their children at home, parents of children with special health care needs face an enormous burden. The additional time and effort they must often devote to finding and managing treatment, attending medical or therapy appointments, and working with day-care providers and schools to find accommodations for their child’s complex and challenging needs can create financial problems, marital discord, sibling issues, and problems at work.37 Across a variety of domains, parental caregivers of children with activity limitations are at a particular disadvantage compared with other parents. They report poorer quality of life, have slightly higher use of sick visits for their own medical issues, and have less favorable employment and financial outcomes.38
Families with chronically ill children have high levels of finance-related family problems. About 40 percent of these families, or about 4 million families nationwide, report experiencing financial problems related to their child’s condition.39 Analyses of the 2005–06 national survey of chronically ill children found that 24 percent of their parents reported work loss as a result of their child’s health care needs. Greater functional limitations and condition instability were associated with increased odds of family work loss. Illustrating that much of this work loss was in fact illness related, parents reported that having access to a coordinated care system (a medical home, described later) was associated with a 50 percent reduction in the odds of work loss.40
A large, nationally representative survey found that children’s limitations in taking care of their own personal needs, such as eating, dressing, and bathing, were associated with parents’ job changes, income loss, and disruptions in sleep patterns. Functional limitations in mobility and self-care were associated with intensive home-care requirements, leading parents to make various job changes to accommodate these needs. Severe limitations in the child’s learning ability greatly increased both job changes and income loss and had a more modest effect on parents’ sleep patterns.41
A study of families of children requiring a tracheotomy found a correlation between the parental care burden and the child’s physical health status, as well as between the parental care burden and increasing economic costs associated with this care. A strong correlation was found between the parental care burden and reduced parental mental health status.42
Multiple studies indicate that mothers’ careers may be especially affected by caring for children with special health care needs. A study of families with autistic children found that in two-parent households, two-thirds of the parents said the mother’s work outside the home was the most affected by their child’s autism, with only one-third identifying the father’s work or both parents’ work as most affected. Three of five mothers had not taken a job because of their child’s autism. Of those mothers who were employed, more than half worked fewer hours to care for their child, one-quarter had taken a leave of absence, and nearly as many had turned down a promotion in order to care for their child.43 Another study found that mothers of children with chronic conditions requiring use of technical devices were much more likely to quit their jobs to care for their child. In addition, single mothers were fifteen times more likely than mothers in two-parent families to quit employment.44
An article written by the parent of a medically complex child described a typical day in the life of parents like her: “Physicians struggle to determine Sam’s diagnosis; therapists struggle to get Sam to reach for that ball, to turn those knees in, to take an unaided step; but we, as parents of a medically complicated child, struggle with much more. I coordinate Sam’s medical records so that every physician knows what every other physician is thinking. Most physicians seem grateful for this. I try to arrange multiple procedures with multiple surgeons on the same day so that Sam will undergo anesthesia as little as possible. Many surgeons seem to want this to happen, but their scheduling staff is not always as accommodating. I consult with our daycare center to determine how Sam can best be served next year in a classroom where everyone is walking but he may not be. I meet with our daughter’s teachers to discuss her behavioral problems, possible signs of the stress she feels. I struggle with keeping up with my work when I need to take off so much time to attend medical appointments.” 45
Some partial strategies have been proposed for relieving parents of some of their care coordination responsibilities. One such strategy is enhancing primary care through establishing patient-centered medical homes (also known as PCMHs).46 These medical homes focus on coordinating care and improving communication among clinicians (primary care providers, specialists, nurses) and between clinicians and parents.47 This approach relies on an effective referral process and the assignment of clear responsibilities among multiple providers and the patient’s family to enable information exchange, facilitate joint decision making, and prevent misunderstandings.48 Studies have demonstrated that poor care coordination between primary care providers and specialists leads to delayed access to care, inferior quality of care, ineffective use of resources, inflated health care costs, and dissatisfaction among patients and providers.49 Another strategy is the concept of global payment, in which primary care, subspecialty care, and inpatient care are integrated and payment is “bundled” as a lump sum for each patient or episode of illness. Such systems would require creating networks of primary care providers, specialists, and hospitals that would benefit from developing close working relationships. Many of the models for “accountable care organizations” envisioned in the Patient Protection and Affordable Health Care Act may incorporate concepts similar to patient-centered medical homes and global payment.
Investing in and enhancing community-based resources, such as school-based health centers, might also help reduce the parental burden of child illness by providing a secondary source of care in a location where children already spend much of their time, thus allowing parents to stay at work occasionally while their child’s minor health care needs are addressed (or leave work for less time because they do not have to transport their child between the school and the clinic). Currently, school-based health centers vary widely in the comprehensiveness of the services they provide. If such centers were regularly staffed by some combination of nurse practitioners, physicians, clinical social workers, psychologists, nutritionists, dentists, or dental hygienists, they could potentially provide a variety of routine preventive and minor acute or chronic care services.