"Parental Involvement in Paediatric Hospital Care" is a wonderful example of a paper on child development. 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 pediatric 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 pediatric health care towards family-centered 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 the admission of their child to the hospital. Pediatric 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 the 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. The 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 PerspectivesThe 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 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 pediatric 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 behavioral 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, pediatric patients, and their health care professionals.
Most studies concerning decision-making in pediatric 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 pediatric 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 from when they are healthy (Beaver, 1996, 15). SignificanceChildren 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 ConclusionIt 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 a stressful situation for the parents and to participate in decision-making is difficult for parents when they don’ t aware of 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 are 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.
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. J Adv Nurs 1991; 16: 772–81.
Callery P. Maternal knowledge and professional knowledge: co-operation and conflict in the care of sick children. Int J Nurs Stud 1997: 341: 27–34.
Capron A. The authority of others to decide about biomedical interventions with incompetents. In: W Gaylin, R Macklin eds. Who speaks for the child? New York: Hastings Centre, 1982: 115–52.
Chu L, Powers P. Synchrony in adolescence. Adolescence 1995; 30: 433–61.
Darbyshire P. Living with a sick child in hospital. London: Chapman and Hall, 1994; 50-56
Department of Health (1996). The Patient’s Charter: Services for children. Children and Young People. Department of Health, London.
Eraker S, Politser P. How decisions are reached: physician and patient. Ann Intern Med 1981; 97: 262–68.
Hermeren G. Kunskapens pris [The price of knowledge], second edition. Stockholm: Humanistisk-samhällsvetenskapliga forskningsrådets förlagstjänst, 1990; 156.
Hinds P, Oakes L, Quargnenti A et al. Challenges and issues in conducting descriptive decision making studies in paediatric oncology: a tale of two studies. J Pediatr Oncol 1998; 15(3 suppl 1): 10–17.
Kristensson-Hallström I, Elander G. Parents’ experience of hospitalization: different strategies for feeling secure. Pediatr Nurs 1997; 23: 361–67.
Levin I, Chapman D. Risky decision making and allocation of resources for leukemia and AIDS programs. Health Psychol 1993; 12: 110–17.
Lorraine M. Wright and Maureen Leahey, (2005). Nurses and Families: A Guide to Family Assessment and Intervention (4th ed.)59-60
Raffin T. Withdrawing life support: how is the decision made? JAMA 1995; 273: 738–39.
Rushton C, Glover J. Involving parents in decisions to forego life-sustaining treatment for critically ill infants and children. AACN Clin Issues Crit Care Nurs 1990; 1: 206–14.
Wulff HR, Goetzshe PC. Den kliniska beslutsprocessen. [The clinical decision-making process.] Lund: Studentlitteratur, 2000