Skip to main content

Full reference list "In case of dying – interdisciplinary action research to improve end of life care in residential care homes"

Full reference list "In case of dying – interdisciplinary action research to improve end of life care in residential care homes"

1. The Quality of Death Index 2015 – Ranking palliative care across the world.: A report by The Economist Intelligence Unit;2015.

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

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

4. Young A, et al. '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.

5. Statistics Sweden. The future population of Sweden 2015–2060. 2015; http://www.scb.se/en_/Finding-statistics/Publishing-calendar/Show-detailed-information/?publobjid=24552. Accessed 05 February, 2019.

6. 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.

7. 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.

8. World Health Organization. The Ottawa Charter for Health Promotion. Geneva1986.

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

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

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

12. 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.

13. Sallnow E. Collective Social Capital: A study of new public health and end-of-life care. Primary Palliative Care Research Group, University of Edinburgh; 2018.https://www.era.lib.ed.ac.uk/handle/1842/33037

14. Bischoff KE, et al Advance Care Planning and the Quality of End-of-Life Care in Older Adults. J of Am Geriatrics Society. 2013;61(2):209-214.

15. Hunt RW, et al. Estimating the impact of advance care planning on hospital admissions, occupied bed days and acute care savings. BMJ Supp&Pall Care. 2013;3(2):227.

16. Detering KM, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Bmj. 2010;340:c1345.

17. Vandervoort A, et al. 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.

18. Piers RD, et al. Advance care planning in terminally ill and frail older persons. Patient education and counseling. 2013;90(3):323-329.

19. Meeussen K, et al. 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.

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

21. Houben CH, et al. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477-489.

22. Martin RS, et al. The Effects of Advance Care Planning Interventions on Nursing Home Residents: A Systematic Review. J Am Med Dir Assoc. 2016;17(4):284-293.

23. Overbeek A, et al. Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study. Age Ageing. 2019.

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

25. 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.

26. Regionala Cancercentrum i Samverkan. Palliativ vård i livets slutskede: Nationellt vårdprogram.Regionala Cancercentrum i Samverkan; 2016.

27. Bollig G, et al. 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.

28. 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.

29. Sundler AJ, et al. Communicative challenges in the home care of older persons - a qualitative exploration. J Adv Nurs. 2016;72(10):2435-2444.

30. Ingravallo F, et al. Discussing advance care planning: insights from older people living in nursing homes and from family members. Int Psychogeriatr. 2018;30(4):569-579.

31. Sharp T, et al. 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.

32. 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.

33. Tishelman C,Henriksson M, Lindqvist O, A Conversation-based Intervention for Clarifying Values and Preferences for End-of-Life in the Advance Care Planning-naïve Swedish Context. Unpublished, Resubmitted 2019.

34. Gilissen J, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. Int J of Nursing Studies. 2017;66:47-59.

35. Lund S, et al. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10(2):e0116629.

36. 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.

37. Stockholm City Elder Care Bureau. Fundamental values of elder care [Internet]. c2016; http://www.stockholm.se/FamiljOmsorg/Aldreomsorg/Annat-stod-och-hjalp/V…. Accessed 05 February, 2019.

38. Chamberlain P, Wolstenholme D, Dexter M. The State of the Art of Design in Health. . 2015.

39. Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care. 2006;15(5):307-310.

40. Caspar S, et al. The Differential Influence of Culture Change Models on Long-Term Care Staff Empowerment and Provision of Individualized Care. Can J Aging. 2009;28(2):165-175.

41. Blair T, Minkler M. Participatory action research with older adults: key principles in practice. Gerontologist. 2009;49(5):651-662.

42. Backhouse T, et al. Older care-home residents as collaborators or advisors in research: a systematic review. Age Ageing. 2016;45(3):337-345.

43. 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.

44. Hansson, J. Evaluation of co-design workshops for improved health care environment in specialized palliative care: the participants’ perspective. Karolinska Institutet: LIME;2016.

45. Ovretveit 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.

46. CoHaSS. TUoE. What is knowledge exchange? 2012; http://www.ed.ac.uk/schools-departments/humanities-soc-sci/research-ke/…. Accessed March 18, 2019.

47. Westerlund B.Design Space Exploration, co-operative creation of proposals for desired interactions with future artefacts. Stockholm, KTH Royal Institute of Technology 2009.

48. Fazey IE, et al. Knowledge exchange: a review and research agenda for environmental management. Environmental Conservation. 2013;40(01):19-36.

49. Frenk J, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923-1958.

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

51. Fredriksson J, Mazzocato P,et al. Business model framework applications in health care – a systematic review. Health Services Manag Research,2017; 30(4), 219–226.

52. Blank S. The Mission Model Canvas – An Adapted Business Model Canvas for Mission-Driven Organizations. 2016; https://steveblank.com/2016/02/23/the-mission-model-canvas-an-adapted-business-model-canvas-for-mission-driven-organizations/. Accessed 20190203.

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

54. Stranz A,Sörensdotter R. Interpretations of person-centered dementia care: Same rhetoric, different practices? A comparative study of nursing homes in England and Sweden. J of Aging Studies. 2016;38:70-80.

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

56. Dalton C, Ranger C. [Integration of a nursing model into a local community service center]. Can Nurse. 1993;89(3):37-40.

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

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

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

60. 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.

61. Richardson B, Derezotes D. Measuring change in disproportionality and disparities: three diagnostic tools. J Health Hum Serv Adm. 2010;33(3):323-352.

62. Araujo YB, et al. [Fragility of the social network of families of children with chronic disease]. Rev Bras Enferm. 2013;66(5):675-681.

63. Barbieri MC, et al. Support network for families of children and adolescents with visual impairment: strengths and weaknesses. Cien Saude Colet. 2016;21(10):3213-3223.

64. Reblin M, et al. Development of the Electronic Social Network Assessment Program Using the Center for eHealth and Wellbeing Research Roadmap. JMIR Hum Factors. 2017;4(3):e23.

65. Early BP, et al. The needs and supportive networks of the dying: an assessment instrument and mapping procedure for hospice patients. Am J Hosp Palliat Care.2000;17(2):87-96.

66. Ray RA, Street AF. Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease. J Adv Nurs. 2006;56(1):35-43.

67. Ray RA, Street AF. Non-finite loss and emotional labour: family caregivers' experiences of living with motor neurone disease. J Clin Nurs. 2007;16(3A):35-43.

68. Street A, et al. entrust-u: Evaluative Life Review and Advance Care Planning. Victoria: LaTrobe University;2011.

69. Tishelman C, Henriksson M, Lindqvist O, A Conversation-based Intervention for Clarifying Values and Preferences for End-of-Life in the Advance Care Planning-naïve Swedish Context. Unpublished, resubmitted for publication.

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

71. Steinhauser KE, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476-2482.

72. Barnes S. 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.

73. Delgado-Guay MO, et al. Advanced cancer patients’ reported wishes at the end of life: a randomized controlled trial. Supp Care in Cancer. 2016;24(10):4273-4281.

74. Litzelman DK, 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.

75. Osman H, et al. Respecting patient choices: using the ’Go Wish' cards as a teaching tool. BMJ Supportive & Palliative Care. 2017.

76. Lum HD, Sudore RL, Bekelman DB. Advance Care Planning in the Elderly. Med Clin N Am. 2015;99(2):391-+.

77. Mignani V, et al. Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis. Clin Interv Aging. 2017;12:475-484.

78. Robert G, et al. Patients and staff as codesigners of healthcare services. BMJ. 2015;350:g7714.

79. Sanders E, Stappers PJ. Convivial toolbox.Amsterdam, The Netherlands: BIS Publishers; 2012.

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

81. Dorst, K. Cross N. Creativity in the design process: Co-evolution of problem–solution. Design Studies. 2001(22):425-437.

82. 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.

83. Craig P, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337.

84. Hawe P, Shiell A, Riley T. Complex interventions: how “out of control” can a randomised controlled trial be? BMJ. 2004;328(7455):1561-1563.

85. Moore GF, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350.

86. Andersson S, et al. End‐of‐life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire. Scandinavian Journal of Caring Sciences. 2017;31(1):72-84.

87. Teno JM, et al. Validation of Toolkit After-Death Bereaved Family Member Interview. Journal of Pain and Symptom Management. 2001;22(3):752-758.

88. van Soest-Poortvliet MC, et al. Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Quality of Life Research. 2012;21(4):671-684.

89. Volicer L, van der Steen JT. Outcome Measures for Dementia in the Advanced Stage and at the End of Life. Advances in Geriatrics. 2014;2014:10.

90. 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.

91. Läs mig! Nationell kvalitetsplan för vård och omsorg om äldre personer. Betänkande av Utredningen om nationell kvalitetsplan för äldreomsorgen. Del 1 In.Vol SOU 2017:21: Statens Offentliga Utredningar; 2017:471.