When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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10. Directions for Research
10. Directions for Research
Pages 350-391
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Funding for comparative health services research to test different approaches to organizing adult or pediatric palliative care is minuscule 350
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briefly reviews initiatives to encourage pediatric research in general and in palliative and end-of-life care specifically; · describes directions for clinical, health services, and educational research to guide improvements in palliative, end-of-life, and bereavement care for children and their families; · summarizes the practical challenges of undertaking pediatric research; and reviews ethical and legal questions raised by research involving . children.
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issued regulations in 1998 that allow it to require drug companies to undertake pediatric testing for certain drugs likely to be used in children (63 Fed. Reg.66632, December 2, 1998, effective April 1, 1999~.2 In May 2001, the FDA published an updated list of priorities for pediatric drug research that included more than 425 drugs or drug uses (FDA, 1Federal regulations requiring pediatric studies of certain drug and biologic products were proposed in 1997 and issued in final form in 1998 (http://www.fda.gov/ohrms/dockets/98fr/ 120298c.txt)
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to collect funds to support pediatric drug research. Pediatric Palliative and End-of-Life Care Research to support improvements in palliative, end-of-life, and bereavement care for children and their families constitutes only a tiny fraction of research involving children.
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Although the evaluation designs do not involve controlled comparisons, the evaluations should provide considerable descriptive and analytic detail about the structure of palliative care programs, populations served, and costs. Foundation-supported studies have been and continue to be particularly important in extending the knowledge base for adult and pediatric palliative, end-of-life, and bereavement care.
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DIRECTIONS FOR FUTURE RESEARCH General Throughout its work, the committee has been hampered by the lack of basic descriptive information about death in childhood as well as scant research testing the effectiveness of clinical interventions and organizational processes and structures in providing palliative, end-of-life, and bereavement care that meets the needs of seriously ill or injured children and their families. Studies reviewed by the committee in Chapter 3 describe deficits in care received by children who die and their families.
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Research should focus on care for infants, children, adolescents, and their families, including siblings, and should cover care from the time of diagnosis through death and bereavement. Priorities for research include but are not limited to the effectiveness of · clinical interventions including symptom management; · methods for improving communication and decisionmaking; · innovative arrangements for delivering, coordinating, and evaluating care, including interdisciplinary care teams and quality improvement strategies, and · different approaches to bereavement care.
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From page 357... ...
The discussion below focuses on several specific areas for further research including quality of life, symptom measurement and management, bereavement, education, and models for delivering and financing palliative, end-of-life, and bereavement care. At a more general level, a comprehensive research agenda for pediatric palliative, end-of-life, and bereavement care should consider .
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From page 358... ...
Each research topic suggested here presents different methodological challenges. In general, researchers may encounter problems in defining and recruiting sufficient numbers of research participants, collecting information about subjective experiences from individuals who may be physically or emotionally limited in their ability or willingness to respond to questions, identifying necessary information in medical or other records, and defining measures relevant to patient and family experiences at different stages of life-threatening medical experiences.
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From page 359... ...
and the complexities of developing better ones. Although improvements in measures relevant for pediatric palliative and end-of-life care can build in a general way on measurement strategies used for adults, much of the work needed will have to be specific to infants, children, and adolescents.
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The committee is aware of no instruments that assess quality of life for siblings of seriously ill children. One task for methodologists is to identify specific domains (e.g., physical, spiritual)
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. The limited research that has been performed has primarily concerned pain management, often in oncology patients only.
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Research directions for several areas related to the prevention and relief of pain and other symptoms are summarized in Box 10.2.
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Stopping certain life-sustaining interventions for a dying child, for example, mechanical ventilation, can involve physical and emotional distress. Research should investigate the prevalence and intensity of treatment-related distress in children with different medical conditions as well as ways to prevent or .
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Most of the pharmacologic agents used for physical and psychological symptoms have not been adequately studied in children. Despite recent incentives for drug research involving children, the developmental pharmacokinetic profile in children of many existing drugs is still unknown and must be established to allow and guide their "on-label" use.
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From page 365... ...
Credible research could also alert families to therapies that do not meet the claims made for them. The benefits of cognitive and behavioral techniques are already well established in the area of pain management (see, e.g., Schechter et al., 3As described by the N~H's National Center for Complementary and Alternative Medicine (NCCAM)
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Research Directions: Perinatal Death More children die in the neonatal period or immediately prior to birth than in any other period in childhood. Recent advances in prenatal diagnosis, prenatal treatment, and neonatal care have led to changes in the timing and nature of decisions that families make when confronted with a fetus or newborn infant with a lethal or potentially lethal condition.
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Obstetricians, pediatricians, nurses, social workers, psychologists, and bereavement specialists would benefit from prospective studies that (1) investigate the coping mechanisms of parents who are confronted by an antenatal or postnatal fetal diagnosis that is potentially lethal and (2)
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Despite the development of sophisticated emergency medical services capacities that each year benefit thousands of seriously ill or injured children and their families, little is known about key aspects of the care provided to children who die and their survivors or about the consequences for emergency care providers of their involvement in child deaths. Box 10.4 summarizes several directions for research on sudden and unexpected death, and Appendix F also discusses research needs.
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Sudden Death, Care Outside the Hospital, and Family Support Each year, before or after a child's sudden and expected death, thousands of families encounter emergency medical personnel, police, staff of medical examiners' offices, and others who may positively support families in time of shock and grief or whose behavior may unintentionally add to their pain and suffering. The committee identified little research on the aftermath of these encounters (see, e.g., Schmidt and Harrahill, 1995~.
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More research would be useful in assessing or clarifying the timing of interventions, the criteria for selecting personnel and situations for intervention, the consequences of different levels or types of training for those conducting the debriefings, and the interactions among complementary interventions. Research Directions: Bereavement Care As in other areas of bereavement research, the scientific basis for current practices with parents, siblings, or others following a child's death is limited (Stroebe et al., 1993, 2001b)
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Prospective research likewise may increase understanding of parents' willingness or reluctance to participate in bereavement support groups
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The sudden, unexpected death of a child may create symptoms similar to posttraumatic stress disorder in perhaps one-third of surviving family members (Peebles-Kleiger, 2000~.4 The experience of posttraumatic stress after a child's death requires continued investigation, as does the relationship of this stress to complicated bereavement. A better understanding is necessary of the characteristics of individuals (e.g., gender)
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After considering written statements from advocacy groups, discussions with parents, research and other literature, and professional experience, the committee iclentifieci several consistent themes: confusion about available resources and their quality, fragmentation of services with consequent lack of coorclination and continuity of care, uneven and limited access to valucci services, and deficits in communication, symptom management, and bereavement care in organizations that care for children with fatal or potentially fatal conclitions. The very availability of key services is not well clocumentecl.
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Collecting data on the availability and characteristics of pediatric palliative and hospice care programs is one important step. Another is community-baseci case studies that describe chilci and family experiences with care coordination and continuity.
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Based on the results, a change might be abandoned or expanded or considered for more formal comparative research. An important practical difference between quality improvement projects and formal research is that the latter must meet requirements for the protection of human subjects including special requirements for children and obtain approval from Institutional Review Boards as described later in this chapter.
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Thus, although it is appropriate to inquire about parents' satisfaction with the care provided to their child and their family and about the help they had making decisions, it is also important to inquire about what the child and family experienced and to continue efforts to develop and use other measures. These measures include valid, reliable, and feasible instruments for assessing physical and psychological symptoms and quality of life.
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These expectations are reasonable but should be further investigated. Interdisciplinary Care Teams Despite their seeming ubiquity and this committee's judgment of their importance, little rigorous research appears to have focused on the prevalence or functioning of different kinds of pediatric or adult palliative care teams or to have identified factors associated with more or less effective team performance in different contexts.
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5. In addition, an important question for pediatric palliative an]
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Descriptive Research More complete descriptive research on financing practices would help providers, managers, and policymakers better understand how care for children who die and their families is financed and how the situation for children differs from that for adults. The first steps should include a stateby-state inventory of variations in Medicaid coverage and reimbursement policies related to the elements of pediatric palliative and end-of-life care discussed in Chapter 7.
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. Researchers and child health advocates have raised several concerns about the application of these schemes to children, as described in Chapter 7.
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. Prospective Payment for Home Health Care Because Medicare policies often influence state and private policies, studies are needed to examine how new Medicare prospective payments systems for home health care and other services have diffused to state Medicaid programs and private health plans and how these systems are affecting care for children with life-threatening medical conditions.
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Nonetheless, given the huge investments in preparing health professionals for practice, research is essential to identify the effectiveness of different educational techniques and emphases in creating desired changes in knowIedge, skills, attitudes, and especially, behaviors. The committee expects that much research involving education in pediatric care, adult palliative care, and generally relevant attitudes or skills (e.g., empathy, interviewing patients)
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Box 10.8 lists several directions for educational research. The involvement of bereaved parents in educational programs should be investigated, both for its impact on trainees and for the consequences for the parents.
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In addition to research on the performance of pediatric teams in different environments and contexts (including providing palliative, end-of-life, and bereavement care in hospitals or at home) , research also should assess methods for successfully educating physicians, nurses, social workers, and others to function as effective members of health care teams.
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From page 385... ...
Another constraint is that although Medicare-related databases offer much comprehensive information about the types and costs of care provided to elderly adults, no comparable information is available for younger individuals covered by the 50-plus state Medicaid programs and thousands of private insurance plans. Other information sources, such as government surveys of home health and hospice agencies, may not include enough children to allow meaningful analyses.
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In addition, the conduct of medical or health services research involving children faces more stringent ethical and legal constraints than apply to research involving most adults. These are discussed below.
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The regulations also provided for institutional review boards (IRBs) to be established by each research institution to review federally funded research that involves human subjects and determine whether proposed research meets federal standards.
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Privately Funded Research The regulations described in the preceding section apply to federally funded research involving children. Pediatric drug research promoted by the Food and Drug Administration is generally funded by pharmaceutical companies.
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the definition of minimal risk, the extent of children's and adolescents' comprehension of information about the risks and benefits of treatments and participation in research, the potential for conflict between parent and child and the meaningfulness of "assent" or discussions about assent with a child when parents can override the child's wishes, and . the performance of IRBs in evaluating research involving children.
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From page 391... ...
In either case, when it is appropriate, including a larger group of children usually has methodological advantages. Much of the research proposed here thus should provide knowledge that will inform and improve the care of children who survive as well as those who do not and likewise will help every family that suffers with a seriously ill or injured child.
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