Parental Involvement in Paediatric Hospital Care - Essay Example

Parental Involvement in Paediatric Hospital Care Introduction The purpose of this project is to investigate the extent to which parents participate in decisions concerning their child’s care when their child is in paediatric hospital care. When children are hospitalized their parents usually accompany them, and at many hospitals they stay and participate in the care. In recent decades there has been a shift in paediatric health care towards family-centred care based on close and continuous involvement of the child’s family. The hospitalization of a child is a stressful situation for parents. Stress factors include uncertainty over the child’s illness and recovery, concerns about the information given, and disruption of their usual parental role (Darbyshire, 1994, 50). Furthermore, parents are in a weak position because they are in an unfamiliar environment and they often experience a loss of control and independence (Callery, 1991, 772). However, children of all ages are more or less dependent upon their parents, which may make the situation difficult when the parental role changes after admission of their child to hospital. Paediatric patients, parents and the health care professionals concerned in their care face every day a large number of situations in which decisions are to be made. Advances in health care present more options involving decision making. Expectations that parents and patients should be involved in decision making have now been formalized in U.S., all patients have the right to receive individualized, personally adapted information about their state of health, and about methods of investigation, care and treatment, in order to be able to participate in decision making (Kristensson, 1997, 365). Seeking information is one of the most important methods used by parents to cope with the stressful event of having an ill child. Information provides a sense of control because it allows parents to assess the course of events, and it is a prerequisite for taking action, such as participating in decision making. Theoretical Perspectives The clinical decision-making process includes four different components based on ethical criteria (Wulff and Goetzshe, 2000). These comprise: the theoretical and empirical components of scientific observation, including deductive conclusions based on theoretical knowledge and empirical discussions based on earlier experiences; and the empathic–hermeneutic and ethical components of humanistic observation, including conclusions based on an understanding of the person as a fellow human being. Most clinical decisions represent a synthesis of these four ways of thinking. The extent of parent/patient involvement in decision making differs between practice and in theory. Some advocate that the responsibility for making a decision lies with health care professionals, whereas others view the patient as the primary decision maker (Beauchamp, 1994, 241). The situation is even more complex when paediatric patients are involved. Theoretical perspectives used in decision making research differ considerably, depending on the aim of the study. The descriptive decision-theory model (Eraker, 1997, 263) used by Hinds et al. (1998, 12) focuses on the process of decision making. Using this model, it is possible to describe and explain how situations and human values affect decision making. The probability model (Levin, 1993, 110) is for predicting a particular decision; it is more often used to simulate decisions than to assess decisions in real life. To evaluate the quality of decision making and study the level of agreement between a given decision and normative guidance, a behavioural decision-making model was used by Byrnes and McClenny (1994, 260). The interactive model of synchrony (Chu, 1995, 440) focuses on the agreement between a person’s desired level of participation in decision making and the actual level of participation. Only limited data are available on health care decision making by parents, paediatric patients, and their health care professionals. Most studies concerning decision making in paediatric care concern difficult situations such as those involving life-sustaining treatments for critically ill children (Rushton, 1990, 210), withdrawing life support situations (Raffin, 1995, 738). Prospective studies on decision making in everyday situations are rare in paediatric practice. There is a clear need for prospective investigations because studies have shown that when people become ill or are told of a serious diagnosis, and when decisions involve severe personal consequences, their preferences concerning decision making are quite different to when they are healthy (Beaver, 1996, 15). Significance Children need somebody to speak for them and represent them. The question is who this person should be; it must be someone capable of relating to the child’s situation. Several authors have identified requirements for people who can act as a proxy for incompetent people. Capron (1982, 120) talks about ‘identity-of-interest doctrine’, which means that proxies are allowed to decide for an incompetent person because ‘the interests of the third party and those of the incompetent [person] are so close that in choosing his or her own interests the third party will choose very much as the incompetent [person] would’. This would imply that parents may be the optimal proxies for their children. Beauchamp and Childress (1994) suggest that the people who act as decision makers on behalf of incompetent patients demonstrate the following qualifications: (1) Ability to make reasoned judgments (competence), (2) Adequate knowledge and information, (3) Emotional stability, and (4) A commitment to the incompetent patient’s interest that is free of conflicts of interest and free of controlling influence by others who might not act in the patient’s best interest (p. 244). There is a Scale of Degrees of Self-Determination (Hermeren, 1990, 156) that divides participation in decision making into five levels: 1) Member of the staff does not listen to B’s (parents) opinions, wishes and valuations. 2) Member of the staff listens but refuses to discuss the opinions of B with B; no consultation, no two-way communication exists. 3) Member of the staff communicates with B but does not care about B’s answer; B’s opinions, wishes and valuations do not influence A’s action. 4) Member of the staff cares about what B says but acts only partly in accordance with B’s opinions, wishes and valuations. 5) Member of the staff acts in accordance with B’s opinions, wishes and valuations. Parents at the hospital are usually in a weak position because they are in an unfamiliar environment and they feel anxious and uncertain about their child’s condition. They often believe that they have insufficient information and medical knowledge about treatment and care (Darbyshire, 1994, 56). Moreover, parents sometimes have a feeling that the knowledge they have about their child is valued less than professional knowledge (Callery, 1997, 30). Discussion and Conclusion It is difficult for parents to participate in decisions when they are not aware of the alternatives available. Professionals have medical and nursing knowledge, and they also have experience of hospital routines, something that is often quite unknown to parents and patients. Parents should not make decisions about health care, but they should have the opportunity to be involved in the decision-making process before the decision is made (Lorraine, 2005, 60). If parents have been involved, they will most likely be more eager for the decision to be implemented than if they have not been involved. It is important for staff members to identify these differences in people, otherwise there is a risk that the children of demanding parents will receive more and better care at the expense of other children. The views that professionals have of parents are reflected in their conduct and their treatment of the parents. When a child becomes hospitalized it becomes stressful situation for the parents and to participate in decision making is difficult for parents when they don’t aware with the available alternatives. In order to become a participant in the process of decision-making communication is required, and parents should be treated as sovereign persons if they are to make balanced decisions and be competent to take part in any meaningful way. In the context of decision making, indeed, in any context except that of issuing direct orders, the provision of information in the form of one-way communication is hardly satisfactory. Two-way communication is preferable because the dissemination and assimilation of information is facilitated and enhanced by the mutual interchange of views between mature equals, with the recipients responding to the provider and vice versa. Only by means of mutual communication and shared understanding can we see parents as individuals who are linked to their child in a unique way. How successful we are in this will largely determine how parents evaluate nurses as professionals. References Beauchamp TL, Childress JF. Principles of biomedical ethics, fourth edition. New York: Oxford University Press, 1994; 240-244 Beaver K, Luker KA, Owens RG, Leinster SJ, Degner LF. Treatment decision making in women newly diagnosed with breast cancer. Cancer Nurs 1996; 19: 8–19. Byrnes J, McClenny B. Decision-making in young adolescents and adults. J Exp Child Psychol 1994; 58: 359–88. Callery P, Smith L. A study of negotiation between nurses and the parents of hospitalized children. 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