Abstract

Preoperative Education and Information Needs of Patients and Key Family Members Related to the Surgical Management of Skull Base Neoplasms.Selected Sections of the Final Research Report. Margaret Borozny Durity, RN, MSN; M. Anne Wyness, RN, MN; Felix A. Durity, MD, FRCSC, recipients of the 1997 Agnes Marshall Research Award.

This qualitative, descriptive research study was designed to determine, from the perspective of the patient with an extensive skull base neoplasm and a key family member, preoperative education and information needs. An education need was defined as the lack of factual, theoretical and experiential knowledge about specific aspects of skull base neoplasms and related deficits, neurodiagnostic procedures, neuroradiology interventions, surgical therapy and care by members of the Neurosciences Patient Care Team. An information need was defined as the lack of knowledge about specific aspects of general perioperative care, e.g. routines on the morning of surgery, expected length of hospitalization, length of stay in locations such as the operating room, Neurointensive Care Unit (NICU) and length of surgery. No published research that examined the effect of an extensive brain tumour and the required surgery on preoperative education and information needs was found in the literature.

Data were collected using semi-structured interviews and a questionnaire. All patients were interviewed following the office visit and/or on admission to hospital. Family members completed a questionnaire at the time of the office visit and/or participated in an interview at the time of the patient's admission to hospital. Eighteen patients and 15 family members participated for a total of 29 interviews and 13 questionnaires. Content analysis, of the transcribed interviews and the questionnaire responses, established themes that were then analyzed in relation to the research questions.

The key themes of hearing the news, education needs and information needs were identified. Hearing the news elicited feelings of pervasive fear in the majority of subjects that permeated their thoughts and actions. Three patient participants responded to hearing the news with resigned acceptance. Whether or not the response to hearing the news was pervasive fear or resigned acceptance, it was noted that a participant could be a knowledge seeker, non-knowledge seeker or ambivalent.

A second main theme was education needs of patients and key family members. The key knowledge areas identified by the patient participants were: the nature of the tumour, surgical management, diagnostic procedures, postoperative experience and recovery. The knowledge area identified most frequently by family member participants was surgical management. Within each of the areas, more explicit education needs arose for both individual patients and family members. Education needs of patients and family members had some similarities but also notable differences.

The third main theme was information needs. A somewhat unexpected finding was that only family members expressed information needs.

The study uncovered the psychological impact associated with hearing the news that you or a family member have/has a serious brain tumour and that treatment for this tumour is complex and dangerous. It also demonstrated that the need for education is significant in the preoperative phase. All the participants identified knowledge they had gained that met education needs and/or described areas where they perceived that further learning was important. The findings have implications for preoperative preparation of patients and families with different types of brain tumours requiring other surgical approaches.

Implications for neuroscience nurses, neurosurgeons and other members of the neurosciences interdisciplinary team arise from the insights the study provides into the experiences of patients and family members. Neuroscience nurses need to understand the impact of the initial meeting with the skull base neurosurgeon. Asking patients and family members to share their experience of hearing the news may help to identify or clarify needs for support and education. It is important to recognize that for many individuals, knowledge seeking is a way to cope with pervasive fear and learning does occur in this context. Working with the neurosurgeon to develop ways to share the education and information provided during the initial visit would promote coordinated care to help patients and family members feel they are cared for as individuals with unique circumstances, abilities and needs.

Neuroscience nurses should provide care that recognizes the similarities and differences in patients' and family members' education and information needs. Ways to identify and respond to family needs, at a time when the focus of care is primarily on the patient, require consideration. Neuroscience nurses should re-examine their traditional role in the provision of preoperative education in light of the changes in care delivery that include pre-admission clinics and same day admit units. Studies that explore the ways neuroscience nurses may meet the significant needs of patients and family members following their initial meeting with the skull base neurosurgeon, for example, in the preadmission clinic and neurosurgeon's office, should be undertaken.