title: Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.
abstract: The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.
authors.affiliation: Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, SE-171 77 Stockholm Sweden; Karolinska University Hospital, The Innovation Center, Stockholm Sweden. Electronic address: carol.tishelman@ki.se.
authors.forename: Carol
authors.initials: C
authors.lastname: Tishelman
authors.affiliation: Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, SE-171 77 Stockholm Sweden; Department of Nursing, University of Umeå, Sweden.
authors.forename: Olav
authors.initials: O
authors.lastname: Lindqvist
authors.affiliation: Department of Nursing, University of Umeå, Sweden.
authors.forename: Senada
authors.initials: S
authors.lastname: Hajdarevic
authors.affiliation: The Institute for Palliative Care, Lund University, Sweden; Skåne Regional Council, Sweden; Department of Health Sciences, Lund University, Sweden.
authors.forename: Birgit H
authors.initials: BH
authors.lastname: Rasmussen
authors.affiliation: Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, SE-171 77 Stockholm Sweden.
authors.forename: Ida
authors.initials: I
authors.lastname: Goliath
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D004777:Environment; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010781:Photography / Q000379:methods*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D013548:Sweden; D013727:Terminal Care / Q000523:psychology*
keywords: Death and dying; End-of-life care; Environment; Hospice; Palliative care; Photo-elicitation; Photo-voice; Sweden