title: A specialist nurse as a resource for family members to patients with brain tumors: an action research study.
abstract: There are few scientific publications available with a focus on the value of supportive care services for patients with brain tumors and their families. The present study is part of a project where a specialist nurse (SN) function was implemented for patients with malignant glioma and their next-of-kin. The purpose of the present study was to identify how next-of-kin made use of the SN function. To identify what they asked for when they contacted the nurse is a way of understanding the vulnerability of family members and thus to learn how to provide better support to the benefit of the family. In accordance to a design inspired by action research, the SN approached patients and next-of-kin during diagnosis at the Departments of Oncology/Neurosurgery and informed them that they could use her as a resource when they wanted. The SN documented all contacts with the next-of-kin of 16 consecutive patients in field notes during the course of the disease: telephone calls and personal meetings-who contacted whom, about what, and with what outcome. In addition, summarizing interviews were conducted. The study is based on the field notes and complemented with the interview data. Different needs were expressed throughout the relationship between the next-of-kin and the SN: initially, conversation about the sick family member was paramount, but as time passed, talk about oneself came to the forefront, and thereafter, they also commented on the relationship to the SN in a more personal tone. The relationship to the SN per se is important-the SN function can be far more than a provider of information. Altogether, the platform provided by the SN easily lends itself to the conceptualization of "a secure base" in attachment theory.
authors.affiliation: Department of Radiation Sciences-Oncology, Umeå University, Umeå, Sweden.
authors.forename: Agneta
authors.initials: A
authors.lastname: Spetz
authors.forename: Roger
authors.initials: R
authors.lastname: Henriksson
authors.forename: Pär
authors.initials: P
authors.lastname: Salander
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009723:Nurse-Patient Relations; D009859:Oncology Nursing; D011368:Professional-Family Relations; D011446:Prospective Studies; D036301:Qualitative Research; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D013548:Sweden