Nancy E. Kline

The meaning of cost for families of children with congenital heart disease.

INTRODUCTION The purpose of this study was to describe the cost burden of congenital heart disease (CHD) and the associated social impact as experienced by families. METHOD Qualitative methods were used to collect and interpret data. Semi-structured interviews were conducted with parents of children with various degrees of CHD complexity and socioeconomic status currently admitted for congenital heart surgery at a large tertiary care regional center. RESULTS The meaning of cost burden as defined by participants resulted in the emergence of two major categories, lifestyle change and uncertainty. Cost was described beyond monetary terms and as a result, data in each category were further clustered into three underlying subcategories labeled financial, emotional, and family burden. The childs disease complexity and parents socioeconomic status seem to be linked to higher levels of stress experienced in terms of finances, emotional drain, and family member burden. Prenatal diagnosis was noted to trigger early discussion of financial uncertainty, often resulting in altered personal spending prior to birth. DISCUSSION The cost experienced by parents of children with complex CHD was described as both life-changing and uncertain. Informing families of these types of additional stressors may allow issues of finances to be considered early in the overall preparation of caring for a child with complex CHD.

A Minor's Consent to Treatment: () An Ethical Dilemma ()

As nurses assume more responsibility in advanced practice roles, they will find themselves confronted with situations that are new and unfamiliar. For those in- volved in the care of the critically or terminally ill p~- tient, the practitioner may eventually be faced with an ethical dilemma. The following case study is used to illustrate issues surrounding a dilemma involving a ter- minally ill child who is of minor age. M. is a 16-year-old Latin American female who was diagnosed with clear cell sarcoma. The tumor involved the soft-tissue structures and musculature of her left upper arm and axilla. She began treatment, but in 2 months the disease had progressed and involved the chest wall. Although M. did not want further treatment, her parents refused hospice care and wanted each and every complaint evaluated and treated fully. M. was subjected to multiple procedures in the end-stage of her disease, instead of remaining at home where she desired to be. care will be provided? Which desires prevail, those of the patient or those of the parents? Who decides when the patient is a minor? It is apparent that the issue of childrens consent to treatment is complicated by many factors. The fights and desires of the parents are impor- tant considerations, because the patient is a minor. However, if the nurse considers the American Nurses Association code for nurses with interpretive statements (1985), which states that the respect for human dignity and support of the patients fights to self-determination are an integral part of nursing practice, then these ques- tions are not easily answered.