Full reference list Tishelman 2018 Forte

Complete Reference List for Forte Program Grant App 2018

References authored by applicants marked in bold.
Those 10 most relevant marked with *.

1.    Chochinov HM. Dignity Therapy - Final Words for Final Days. Oxford: Oxford University Press; 2012.

2.    Abel J. Compassionate communities and end-of-life care. Clinical Medicine. 2018;18(1):6-8.

3.    National Board of Health and Welfare. Nationella riktlinjer – Utvärdering 2016 - Palliativ vård i livets slutskede [National guidelines - Evaluation 2016 - Palliative care at the end-of-life]. 2016; http://www.socialstyrelsen.se/publikationer2016/2016-12-3 Accessed 12 April, 2017.

4.    The Economist. 2015 Quality of Death Index. 2015; http://www.eiuperspectives.economist.com/healthcare/2015-quality-death-index. Accessed 10 April, 2017.

5.    Saunders CM. The Philosophy of Terminal Care. In: Saunders CM, ed. The Management of Terminal Disease. London: Edward Arnold Ltd; 1978:193-202.

6.    The Swedish Register of Palliative Care. Annual report 2016 [in Swedish]. 2017; http://palliativ.se/fou/fou-in-english/

*7.    Håkanson C, Ohlen J, Morin L, Cohen J. A population-level study of place of death and associated factors in Sweden. Scand J Public Health. 2015;43(7):744-751.

8.    Young A, Froggatt K, Brearley SG. 'Powerlessness' or 'doing the right thing' - Moral distress among nursing home staff caring for residents at the end of life: An interpretive descriptive study. Palliat Med. 2017;31(9):853-860.

9.    Statistics Sweden. The future population of Sweden 2015–2060. 2015; http://www.scb.se/en_/Finding-statistics/Publishing-calendar/Show-detailed-information/?publobjid=24552

10.    Etkind SN, Bone AE, Gomes B, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine. 2017;15(1):102.

*11.    Szebehely M, Stranz A, Strandell R. Vem ska arbeta i framtidens äldreomsorg? (Who will work in elder care in the future?). Department of Social Work;2017.

12.    Kastenbaum RJ. Chapter 3: The Death System. In: Death, Society, and Human Experience 11th Edition ed. Upper Saddle River: Pearson Education; 2011:68-105.

13.    Wegleitner K, Heimerl K, Kellehear A. Preface. In: Wegleitner K, Heimerl K, Kellehear A, eds. Compassionate Communities: Case Studies from Britain and Europe. London: Routledge; 2015:xiii.

14.    Rumbold B, Aoun SM. Bereavement and palliative care: A public health perspective. Prog Palliat Care. 2014;22(3):131-135.

15.    Walter T. What death means now. Bristol, UK: Policy Press; 2017.

16.    World Health Organization. The Ottawa Charter for Health Promotion. Geneva1986. http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index1.html

17.    Stjernsward J. Palliative care: the public health strategy. J Public Health Policy. 2007;28(1):42-55.

18.    Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality. 1999;4(1):75-82.

19.    Kellehear A. Compassionate Cities: Public health and end-of-life care. London: Routledge; 2005.

20.    Barry V, Patel M. An Overview of Compassionate Communities in England. West Midlands, England: Murray Hall Community Trust and National Council for Palliative Care Dying Matters;2013. http://www.compassionatecommunities.org.uk/files/PDF/CC_Report_Final_July_2013-2.pdf

*21.    Sallnow ES. Collective Social Capital: A study of new public health and end-of-life care. unpublished: Primary Palliative Care Research Group, University of Edinburgh; 2018.

22.    Street AF. Leading the way: innovative health promoting palliative care. Contemp Nurse. 2007;27(1):104-106.

*23.    Westerlund C, Tishelman C, Benkel I, et al. Public awareness of palliative care in Sweden. Scand J Public Health. 2018: Jun;46(4):478-487. DOI 10.1177/1403494817751329.

24.    Bischoff KE, Sudore R, Miao Y, Boscardin WJ, Smith AK. Advance Care Planning and the Quality of End-of-Life Care in Older Adults. Journal of the American Geriatrics Society. 2013;61(2):209-214.

25.    Hunt RW, Jones L, Owen L, Seal M. Estimating the impact of advance care planning on hospital admissions, occupied bed days and acute care savings. BMJ Supportive & Palliative Care. 2013;3(2):227.

26.    Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Bmj. 2010;340:c1345.

27.    Vandervoort A, Houttekier D, Vander Stichele R, van der Steen JT, Van den Block L. Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study. PLoS One. 2014;9(3):e91130.

28.    Piers RD, van Eechoud IJ, Van Camp S, et al. Advance care planning in terminally ill and frail older persons. Patient education and counseling. 2013;90(3):323-329.

29.    Meeussen K, Van der Block L, Deliens L. Advance care planning: International Perspectives. In: Gott M, Ingleton C, eds. Living with Ageing and Dying: Palliative and End-of-Life Care for Older People. Oxford, UK: Oxford University Press; 2011:102-115.

30.    Balaban RB. A physician's guide to talking about end-of-life care. J Gen Intern Med. 2000;15(3):195-200.

31.    Tinetti ME. The retreat from advanced care planning. JAMA. 2012;307(9):915-916.

32.    Lack P, Biller-Andorno N, Brauer S, eds. Advance Directives. New York: Springer; 2014. Weisstub DN, ed. International Library of Ethics, Law and the New Medicine; No. 54.

33.    Regeringens proposition. Framtidsfullmakter--en ny form av ställföreträdarskap för vuxna. 2016:202. https://www.regeringen.se/rattsliga-dokument/lagradsremiss/2016/09/framtidsfullmakter--en-ny-form-av-stallforetradarskap-for-vuxna/

34.    Regionala Cancercentrum i Samverkan. Palliativ vård i livets slutskede: Nationellt vårdprogram. Regionala Cancercentrum i Samverkan; 2016-12-14 2016. https://www.cancercentrum.se/samverkan/vara-uppdrag/palliativ-vard/vardprogram/gallande-vardprogram/

35.    Bollig G, Gjengedal E, Rosland JH. They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliat Med. 2016;30(5):456-470.

36.    Fleming J, Farquhar M, Cambridge City over-75s Cohort study c, Brayne C, Barclay S. Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care--Qualitative Research within a Population-Based Cohort Study. PLoS One. 2016;11(4):e0150686.

37.    Sundler AJ, Eide H, van Dulmen S, Holmstrom IK. Communicative challenges in the home care of older persons - a qualitative exploration. J Adv Nurs. 2016;72(10):2435-2444.

38.    Sharp T, Moran E, Kuhn I, Barclay S. Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis. Br J Gen Pract. 2013;63(615):e657-668.

39.    Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Annals of internal medicine. 2010;153(4):256-261.

40.    Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477-489.

41.    Currow DC, Abernethy AP, Fazekas BS. Specialist palliative care needs of whole populations: a feasibility study using a novel approach. Palliat Med. 2004;18(3):239-247.

42.    Kellehear A. Compassionate communities: end-of-life care as everyone's responsibility. QJM. 2013;106(12):1071-1075.

*43.    Lindqvist O, Tishelman C. Going public: reflections on developing the DoBra research program for health-promoting palliative care in Sweden. Prog Palliat Care. 2016;24(1):19-24. https://www.döbra.se/wp-content/uploads/2017/05/LindqvistTishelmanDoBraResearchProgram.pdf

44.    Antonovsky A. Unraveling the mystery of health: How people manage stress and stay well. Jossey-Bass; 1987.

45.    The University of Edinburgh CoHaSS. What is knowledge exchange? 2017; http://www.ed.ac.uk/schools-departments/humanities-soc-sci/research-ke/support-for-staff/knowledge-exchange/knowledge-exchange-info. Accessed May 6, 2018.

46.    Bradbury H. Introduction: How to situate and define action research. In: Bradbury H, ed. The Sage Handbook of Action Research. Third Edition ed. Thousand Oaks, Ca: Sage; 2015:769.

47.    Waterman H, Tillen D, Dickson R, de Koning K. Action research: a systematic review and guidance for assessment. Health Technol Assess. 2001;5(23):157 pp.

48.    Chamberlain P, Wolstenholme D, BDexter M, Seals E. The State of the Art of Design in Health: An expert-led review of the extent of the art of design theory and practice in health and social care. Sheffield, Sheffield Hallam University 2015.

49.    Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M. Patients and staff as codesigners of healthcare services. BMJ. 2015;350:g7714.

50.    Donetto S, Pierri P, Tsianakas V, Robert G. Experience-based Co-design and Healthcare Improvement: Realizing Participatory Design in the Public Sector. Des J. 2015;18(2):227-248.

51.    Dorst K. Creativity in the design process: Co-evolution of problem–solution. Design Studies. 2001;22:425–437.

52.    Schön D. The Reflective Practitioner: How Professionals Think in Action. New York: Basic Books; 1983.

53.    Robert G. Participatory action research: using experience-based co-design to improve the quality of healthcare services. In: Ziebland S, Coulter A, Calabrese JD, Locock L, eds. Understanding and Using Health Experiences: Improving patient care. Oxford Scholarship Online; 2013. DOI:10.1093/acprof:oso/9780199665372.003.0014

 54.    Bustreo F, Zoysa Id, Carvalho IAd. Policy directions to improve women's health beyond reproduction. Bulletin of the World Health Organization. 2013;91(9):712-714. doi: http://dx.doi.org/10.2471/BLT.12.109785

55.    Stadsdelsförvaltningarna Kungsholmen N, Östermalm och Södermalm. ÄLDREBOENDEPLANERING FÖR INNERSTADEN 2015, 2016-2017 MED UTBLICK MOT 2030/40. 2014. https://insynsverige.se/documentHandler.ashx?did=1752625

56.    Statistics Sweden. The Swedish Occupational Register with statistics 2013. 2016; http://www.scb.se/en_/Finding-statistics/Statistics-by-subject-area/Labour-market/Employment-and-working-hours/The-Swedish-Occupational-Register-with-statistics/Aktuell-Pong/59071/Behallare-for-Press/385101/. Accessed 20160111.

57.    personal communication from susanne.gullbergbrannstrom@scb.se 2017.

58.    Swedish occupational register with statistics 2008. 2008; http://www.scb.se/sv_/Hitta-statistik/Statistik-efteramne/

59.    Torres S. Expanding the gerontological imagination on ethnicity: conceptual and theoretical perspectives. Ageing & Society. 2015;35(05):935-960.

60.    Ulmanen P, Szebehely M. From the state to the family or to the market? Consequences of reduced residential eldercare in Sweden. International Journal of Social Welfare. 2015;24(1):81-92.

61.    Schön P, Lagergren M, Kareholt I. Rapid decrease in length of stay in institutional care for older people in Sweden between 2006 and 2012: results from a population-based study. Health Soc Care Community. 2016;24(5):631-638.

62.    Gilissen J, Pivodic L, Smets T, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. International Journal of Nursing Studies. 2017;66:47-59.

63.    Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10(2):e0116629.

64.    Rämgård M, Forsgren A, Avery H. PHR in health and social care for older people – regional development through learning within and across organisations. Educational Action Research. 2017;25(4):506-524.

65.    Stockholm City Elder Care Bureau. Fundamental values of elder care [Internet]. c2016; http://www.stockholm.se/FamiljOmsorg/Aldreomsorg/Annat-stod-och-hjalp/Vardegrund/?kontakt.

66.    Ovretveit J, Andreen-Sachs M, Carlsson J, et al. Implementing organisation and management innovations in Swedish healthcare: lessons from a comparison of 12 cases. J Health Organ Manag. 2012;26(2):237-257.

67.    Ovretveit J, Klazinga N. Learning from large-scale quality improvement through comparisons. Int J Qual Health Care. 2012;24(5):463-469.

68.    Berggren P. Centre of Rural Medicine Storuman, Sweden http://www.glesbygdsmedicin.info/aare2012/Forelasningar/Glesbygdsmedicin%20aare%202012.pdf

69.    Jämvårdsgruppen. Ojämlikhet i Västerbotten: Läget i Västerbotten i nationell jämförelse - en kartläggning Västerbottens läns landsting;2012.

70.    Abel J, Sallnow L, Murray S, Kerin M. Each Community is Prepared to Help: Community Development in End-of-Life Care. Guidance on Ambition Six. London: The National Council for Palliative Care;2016. http://www.ncpc.org.uk/sites/default/files/J1448%20ncpc_strand_6_ART_NC.pdf

*71.    Näverlo S, Carson DB, Edin-Liljegren A, Ekstedt M. Patient perceptions of a Virtual Health Room (VHR) installation in rural Sweden. Rural & Remote Health. 2016;16:3823. https://www.rrh.org.au/journal/article/3823

*72.    Kroik L, Tishelman C, Stoor K, Lindqvist O. The Past is the Present: Death Systems among the Indigenous Sámi in Scandinavia. In manuscript. 2018.

73.    Cruz Rivera S, Kyte DG, Aiyegbusi OL, Keeley TJ, Calvert MJ. Assessing the impact of healthcare research: A systematic review of methodological frameworks. PLOS Medicine. 2017;14(8):e1002370.

74.    Feller I. Assessing the societal impact of publicly funded research. The Journal of Technology Transfer. 2017. https://doi.org/10.1007/s10961-017-9602-z 

75.    Greenhalgh T, Raftery J, Hanney S, Glover M. Research impact: a narrative review. BMC Medicine. 2016;14(1):78.

76.    Hill S. Assessing (for) impact: future assessment of the societal impact of research. Palgrave Communications. 2016;2:16073.

77.    Morgan Jones M, Manville C, Chataway J. Learning from the UK’s research impact assessment exercise: a case study of a retrospective impact assessment exercise and questions for the future. The Journal of Technology Transfer. 2017.     doi.org/10.1007/s10961-017-9608-6

78.    Penfield T, Baker MJ, Scoble R, Wykes MC. Assessment, evaluations, and definitions of research impact: A review. Research Evaluation. 2014;23(1):21-32.

79.    European Science Foundation, Working group 2. The challenges of impact assessment. 2012. http://www.dfg.de/download/pdf/dfg_im_profil/zahlen_fakten/programm_evaluation/impact_assessment_wg2.pdf

80.    King’s College London and Digital Science. The nature, scale and beneficiaries of research impact: An initial analysis of Research Excellence Framework (REF) 2014 impact case studies. Bristol March 2015 https://www.kcl.ac.uk/sspp/policy-institute/publications/Analysis-of-REF-impact.pdf

81.    Seymour J. The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care. Journal of Palliative Medicine. 2018;21(S1):S-30-S-36.

*82.    Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: A systematic review. Palliat Med. 2016;30(3):200-211.

83.    Banks S, Herrington T, Carter K. Pathways to co-impact: action research and community organising. Educational Action Research. 2017;25(4):541-559.

84.    Dart J, Davies R. A dialogical, story-based evaluation tool: The most significant change technique. Am J Eval. 2003;24(2):137-155.

85.    Serrat O. The Most Significant Change Technique. In: Knowledge Solutions: Tools, Methods, and Approaches to Drive Organizational Performance. Singapore: Springer Singapore; 2017:35-38.

86.    Willetts J, Crawford P. The most significant lessons about the Most Significant Change technique. Development in Practice. 2007;17(3):367-379.

87.    Wilson V. Research Methods: The Most Significant Change Technique. 2016. Evidence Based Library and Information Practice, 9(3), 121–123. https://ejournals.library.ualberta.ca/index.php/EBLIP/article/view/22918/17169 

88.    Osterwalder A, Pigneur Y. Business Model Generation: A Handbook for Visionaries, Game Changers, and Challengers. Hoboken, NJ: John Wiley & Sons, Inc.; 2010.

89.    Fredriksson J, Mazzocato P, Muhammad R, Savage C. Business model framework applications in health care – a systematic review. Health Serv Manage Res. 2017 Nov;30(4):219-226. doi: 10.1177/0951484817726918. Epub 2017 Sep 4.

90.    Baines D, Cunningham I. Using comparative perspective rapid ethnography in international case studies: Strengths and challenges. Qualitative Social Work. 2013;12(1):73-88.

91.    Menkin ES. Go Wish: a tool for end-of-life care conversations. Journal of palliative medicine. 2007;10(2):297-303.

92.    Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476-2482.

*93.    Tishelman C, Henriksson M, Lindqvist O, et al. A Conversation-based Intervention for Clarifying Values and Preferences for End-of-Life in the Advance Care Planning-naïve Swedish Context. manuscript for submission in July 2018.

94.    Barnes S, Gardiner C, Gott M, et al. Enhancing patient-professional communication about end-of-life issues in life-limiting conditions: a critical review of the literature. Journal of pain and symptom management. 2012;44(6):866-879.

95.    Delgado-Guay MO, Rodriguez-Nunez A, De la Cruz V, et al. Advanced cancer patients’ reported wishes at the end of life: a randomized controlled trial. Supportive Care in Cancer. 2016;24(10):4273-4281.

96.    Litzelman DK, Inui TS, Schmitt-Wendholt KM, et al. Clarifying Values and Preferences for Care Near the End of Life: The Role of a New Lay Workforce. J Community Health. 2017;42(5):926-934.

97.    Osman H, El Jurdi K, Sabra R, Arawi T. Respecting patient choices: using the ’Go Wish' cards as a teaching tool. BMJ Supportive & Palliative Care. 2018;8:194-197

98.    Hartman A. Diagrammatic assessment of family relationships. Journal of Contemporary Human Services. 1995;1:111-122.

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100.    Holtslander L. Clinical application of the 15-minute family interview: addressing the needs of postpartum families. J Fam Nurs. 2005;11(1):5-18.

101.    Ray RA, Street AF. Ecomapping: an innovative research tool for nurses. Journal of advanced nursing. 2005;50(5):545-552.

102.    Rempel GR, Neufeld A, Kushner KE. Interactive use of genograms and ecomaps in family caregiving research. J Fam Nurs. 2007;13(4):403-419.

103.    Roque EM, Ferriani M. A study about families of children and teenagers who were victims of violence and faced judicial intervention. Rev Lat Am Enfermagem. 2007;15(4):549-555.

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124.    Martin RS, Hayes B, Gregorevic K, Lim WK. The Effects of Advance Care Planning Interventions on Nursing Home Residents: A Systematic Review. J Am Med Dir Assoc. 2016;17(4):284-293.

125.    Noonan K. Death literacy-developing a tool to measure the social impact of public health initiatives. . Ann Palliat Med. 2018;7(Supp 1):AB007.

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*128.    Sallnow L, Tishelman C, Lindqvist O, Richardson H, Cohen J. Research in public health and end-of-life care – Building on the past and developing the new. Progress in Palliative Care. 2016;24(1):25-30.

129.    Lindqvist O, Rasmussen BH, Furst CJ, Tishelman C, Sweden Oti. Opening the doors a crack wider: palliative care research data in the public domain. BMJ Support Palliat Care. 2016;6(1):113-115. doi: 10.1136/bmjspcare-2015-000959

130.    Lindqvist O, Tishelman C. Room for Death--International museum-visitors' preferences regarding the end of their life. Soc Sci Med. 2015;139:1-8. DOI: 10.1016/j.socscimed.2015.06.016

131.    Tishelman C, Lindqvist O, Hajdarevic S, Rasmussen BH, Goliath I. Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life. Soc Sci Med. 2016;168:120-129. doi: 10.1016/j.socscimed.2016.09.012