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Beyond the visual and verbal : Using participant-produced photographs in research on the surroundings for care at the end-of-life

Tishelman, Carol; Lindqvist, Olav; Hajdarevic, Senada; Rasmussen, Birgit H. LU and Goliath, Ida (2016) In Social Science and Medicine 168. p.120-129
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... (More)

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.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Death and dying, End-of-life care, Environment, Hospice, Palliative care, Photo-elicitation, Photo-voice, Sweden
in
Social Science and Medicine
volume
168
pages
10 pages
publisher
Elsevier
external identifiers
  • Scopus:84987870730
ISSN
0277-9536
DOI
10.1016/j.socscimed.2016.09.012
language
English
LU publication?
yes
id
d1676b29-f8d1-4522-96fa-197161284d1e
date added to LUP
2016-10-13 13:30:13
date last changed
2016-11-14 09:43:07
@misc{d1676b29-f8d1-4522-96fa-197161284d1e,
  abstract     = {<p>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.</p>},
  author       = {Tishelman, Carol and Lindqvist, Olav and Hajdarevic, Senada and Rasmussen, Birgit H. and Goliath, Ida},
  issn         = {0277-9536},
  keyword      = {Death and dying,End-of-life care,Environment,Hospice,Palliative care,Photo-elicitation,Photo-voice,Sweden},
  language     = {eng},
  month        = {11},
  pages        = {120--129},
  publisher    = {ARRAY(0xa344a88)},
  series       = {Social Science and Medicine},
  title        = {Beyond the visual and verbal : Using participant-produced photographs in research on the surroundings for care at the end-of-life},
  url          = {http://dx.doi.org/10.1016/j.socscimed.2016.09.012},
  volume       = {168},
  year         = {2016},
}