title: Quality of life in spite of an unpredictable future: the next of kin of patients with multiple sclerosis.
abstract: The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kin's quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.
authors.affiliation: School of Health and Medical Sciences, University of Orebro, Orebro, Sweden. elisabeth.liedstrom@oru.se
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Liedström
authors.forename: Ann-Kristin
authors.initials: AK
authors.lastname: Isaksson
authors.forename: Gerd
authors.initials: G
authors.lastname: Ahlström
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005260:Female; D005544:Forecasting; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000451:nursing / Q000523:psychology; D015404:Nursing Methodology Research; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D013548:Sweden; D035502:Trust; D035501:Uncertainty