title: Caregivers' perceptions about terminally ill family members' quality of life.
abstract: Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.
authors.affiliation: The Sahlgrenska Academy at Göteborgs University, Institute of Health and Care Sciences, Göteborg, Sweden. titti.melin-johansson@miun.se
authors.forename: C
authors.initials: C
authors.lastname: Melin-Johansson
authors.forename: B
authors.initials: B
authors.lastname: Axelsson
authors.forename: E
authors.initials: E
authors.lastname: Danielson
mesh_terms: D000368:Aged; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D017144:Focus Groups / Q000379:methods; D006701:Home Nursing / Q000523:psychology; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D019452:Terminally Ill / Q000523:psychology*