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Researchers explore parents' influence on the care of seriously ill children

When a child is critically ill, families face important treatment decisions at a time of grief, stress, and fatigue. Doctors must conduct highly demanding clinical tasks, provide constant updates on the child's progress, educate family members, help them cope, and also help them to make difficult decisions about their child's care.

A study supported in part by the Agency for Healthcare Research and Quality (K02 HS11285) recently identified the types of conflicts that can arise between the clinical team and family members of children receiving prolonged intensive care. A second AHRQ-supported study (National Research Service Award training grant T32 HS00063) found that most parents of children with cancer wanted to be involved in their care and the more involved the parents were, the more likely they were to use complementary therapies for their child. Both studies are briefly summarized here.

Studdert, D.M., Burns, J.P., Mello, M.M., and others (2003, September). "Nature of conflict in the care of pediatric intensive care patients with prolonged stay." Pediatrics 112(3), pp. 553-558.

Nearly half of the children treated in a pediatric intensive care unit (PICU) for more than 8 days had some conflict associated with their care, found this study. The majority of these conflicts involved disagreements between clinicians and family members. However, more than one-third of the conflicts occurred among clinicians, most frequently between intensive care doctors and surgical specialists.

The researchers prospectively tracked conflicts arising at the PICU of one university-affiliated hospital over an 11-month period. They interviewed the treating physicians and nurses at two stages during the PICU stay. They classified detected conflicts by type: team-family, intra-team, or intra-family and source.

Clinicians identified 55 conflicts involving nearly half (51) of the 110 children in this group. Sixty percent of the conflicts (33) were team-family, 38 percent (21) were intra-team, and 1 was intra-family. Among team-family conflicts, nearly half (48 percent) were attributed to poor communication and more than one-third (39 percent) to the unavailability of the parents/guardians to discuss treatment options and make decisions.

Disagreements over the care plan also accounted for a significant portion (39 percent) of team-family conflicts. Poor communication (38 percent) and disagreements over the care plan (33 percent) were the most common sources of intra-team conflicts. Patients with conflicts were significantly more likely to be minority race (45 vs. 25 percent) and to have Medicaid insurance coverage (43 vs. 14 percent). The researchers suggest that ethics consultations and family meetings may be able to improve the quality of PICU care and help resolve these conflicts.

Gagnon, E.M., and Recklitis, C.J. (2003). "Parents' decision-making preferences in pediatric oncology: The relationship to health care involvement and complementary therapy use." Psycho-Oncology 12, pp. 442-452.

Nearly half (46 percent) of the predominantly white, well-educated parents of children with cancer in this study used complementary therapy (CT) for their children, and 33 percent began using a new CT following their child's cancer diagnosis. Parents who were more involved in medical decisions about their children were more likely to use CT. The investigators asked 118 parents of children cared for in the pediatric oncology clinic of a comprehensive cancer center to complete the Krantz Health Opinion Survey (KHOS) and Control Preferences Scale for Pediatrics (CPS-P), which asked about their preferences for involvement in their child's care. Parents also were asked to specify which CTs out of a list of 27 CTs were used before and/or after their child's cancer diagnosis.

CTs ranged from acupressure and acupuncture, magnets, massage, dietary supplements, herbal remedies, and high-dose vitamins to shark cartilage, specific diets, guided imagery, tai chi, and hypnosis. The most common cancers among the children were leukemia, sarcoma, brain tumor, and lymphoma. Overall, 59 percent of parents preferred a collaborative role in making decisions about treatment, 28 percent wanted an active role, and 13.6 percent specified a passive role.

CT users had higher mean scores on the KHOS than non-users. Parents who reported greater desire to be active in their own medical care tended to give their child more CT. These findings reinforce the need for providers to form partnerships with parents and to openly discuss parents' questions about CT. For example, some types of CT, like St. John's Wort, typically used for depression, may interfere with cancer chemotherapy agents.

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