title: Being a close relative of a dying person. Development of the concepts "involvement in the light and in the dark".
abstract: The current study is based on an earlier article in which relatives' involvement in care was described as "involvement in the light" or "involvement in the dark." Involvement in the light was characterized as the relative being well informed and experiencing a meaningful involvement. The relatives involved in the dark felt uninformed, that they were "grouping around in the dark" when they tried to support the patient. The present study analyzed further the meaning of "involvement in the light" and "involvement in the dark," and investigated whether two different care cultures, the relationship with the staff, and a rapid course of illness influence the involvement of relatives. Relatives of 52 patients who died, 30 at a surgical department and 22 in a hospice ward, were interviewed after the patients' deaths. All the relatives of the patients in the hospice ward and 13 of those in the surgical department were judged to be involved in the light. Of the relatives judged to be involved in the dark, 12 either had a sick relative with a rapid course of illness or felt that the sick relative had died unexpectedly. A pattern was clearly observed: The relatives involved in the light described being met with respect, openness, sincerity, confirmation, and connection, whereas the opposite was experienced by those involved in the dark.
authors.affiliation: Department of Caring Sciences, University of Orebro, Sweden.
authors.forename: B
authors.initials: B
authors.lastname: Andershed
authors.forename: B M
authors.initials: BM
authors.lastname: Ternestedt
mesh_terms: D017028:Caregivers; D006801:Humans; D007398:Interpersonal Relations; D009859:Oncology Nursing; D010166:Palliative Care / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires