Meanings of being a close relative of a family member treated with haemodialysis approaching end of life

Journal of Clinical Nursing

Volumn 24, Issue 3-4, 2015, Pages 447-456

  Axelsson, Lena ^a,b   Klang, Birgitta ^b   Lundh Hagelin, Carina ^a,b   Jacobson, Stefan H ^c   Gleissman, Sissel Andreassen ^a,c  

^a SOPHIAHEMMET UNIVERSITY COLLEGE   (Sweden)

^b KAROLINSKA INSTITUTE   (Sweden)

^c DANDERYD HOSPITAL   (Sweden)

Author keywords

Close relative; Death; Dying; End of life; End stage renal disease; Haemodialysis; Phenomenological hermeneutics; Qualitative interviews; Retrospective interviews

Indexed keywords

AGED; ATTITUDE TO DEATH; FAMILY; FEMALE; HEALTH SERVICE; HUMAN; KIDNEY FAILURE, CHRONIC; MALE; MIDDLE AGED; PSYCHOLOGY; QUALITY OF LIFE; RENAL REPLACEMENT THERAPY; RETROSPECTIVE STUDY; TERMINAL CARE; VERY ELDERLY;

AGED; AGED, 80 AND OVER; ATTITUDE TO DEATH; FAMILY; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; KIDNEY FAILURE, CHRONIC; MALE; MIDDLE AGED; QUALITY OF LIFE; RENAL DIALYSIS; RETROSPECTIVE STUDIES; TERMINAL CARE;

EID: 84922662167     PISSN: 09621067     EISSN: 13652702     Source Type: Journal    
DOI: 10.1111/jocn.12622     Document Type: Article

References (53)

1. Alvarez-Ude F, Valdes C, Estebanez C & Rebollo P (2004) Health-related quality of life of family caregivers of dialysis patients. Journal of Nephrology 17, 841-850.
2. Andershed B (2006) Relatives in end-of-life care-part 1: a systematic review of the literature the five last years, January 1999-February 2004. Journal of Clinical Nursing 15, 1158-1169.
3. Andershed B & Ternestedt BM (1998) Involvement of relatives in the care of the dying in different care cultures: involvement in the dark or in the light? Cancer Nursing 21, 106-116.
4. Andershed B & Ternestedt BM (1999) Involvement of relatives in care of the dying in different care cultures: development of a theoretical understanding. Nursing Science Quarterly 12, 45-51.
5. Andershed B & Ternestedt BM (2000) Being a close relative of a dying person. Development of the concepts "involvement in the light and in the dark". Cancer Nursing 23, 151-159.
6. Ashby M, op't Hoog C, Kellehear A, Kerr PG, Brooks D, Nicholls K & Forrest M (2005) Renal dialysis abatement: lessons from a social study. Palliative Medicine 19, 389-396.
7. Axelsson L, Randers I, Jacobson SH & Klang B (2012a) Living with haemodialysis when nearing end of life. Scandinavian Journal of Caring Sciences 26, 45-52.
8. Axelsson L, Randers I, Lundh Hagelin C, Jacobson SH & Klang B (2012b) Thoughts on death and dying when living with haemodialysis approaching end of life. Journal of Clinical Nursing 21, 2149-2159.
9. Belasco AG & Sesso R (2002) Burden and quality of life of caregivers for hemodialysis patients. American Journal of Kidney Diseases 39, 805-812.
10. Belasco A, Barbosa D, Bettencourt AR, Diccini S & Sesso R (2006) Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis. American Journal of Kidney Diseases 48, 955-963.
11. Carlander I, Ternestedt BM, Sahlberg-Blom E, Hellstrom I & Sandberg J (2011) Being me and being us in a family living close to death at home. Qualitative Health Research 21, 683-695.
12. Collins M & Lehane E (2013) Perspectives on death, dying and advance care planning from patients receiving haemodialysis. Journal of Renal Care 39, 5-11.
13. Davison SN & Jhangri GS (2010) Impact of pain and symptom burden on the health-related quality of life of hemodialysis patients. Journal of Pain and Symptom Management 39, 477-485.
14. Davison SN, Jhangri GS & Johnson JA (2006) Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: a simple assessment of symptom burden. Kidney International 69, 1621-1625.
15. Dyregrov K (2004) Bereaved parents' experience of research participation. Social Science & Medicine 58, 391-400.
16. Elkington H, White P, Addington-Hall J, Higgs R & Pettinari C (2004) The last year of life of COPD: a qualitative study of symptoms and services. Respiratory Medicine 98, 439-445.
17. Gadamer H-G (1996) The Enigma of Health. The Art of Healing in a Scientific Age. Polity Press, Cambridge.
18. Glaser BG & Strauss AL (1965/2005) Awareness of Dying. Aldine, Chicago, IL.
19. Graneheim UH & Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24, 105-112.
20. Hagren B, Pettersen IM, Severinsson E, Lutzen K & Clyne N (2001) The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease. Journal of Advanced Nursing 34, 196-202.
21. Harrison K & Watson S (2011) Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic. International Journal of Palliative Nursing 17, 42-46.
22. Kimmel PL & Patel SS (2006) Quality of life in patients with chronic kidney disease: focus on end-stage renal disease treated with hemodialysis. Seminars in Nephrology 26, 68-79.
23. Koffman J, Higginson IJ, Hall S, Riley J, McCrone P & Gomes B (2012) Bereaved relatives' views about participating in cancer research. Palliative Medicine 26, 379-383.
24. Kurella Tamura M & Cohen LM (2010) Should there be an expanded role for palliative care in end-stage renal disease? Current Opinion in Nephrology and Hypertension 19, 556-560.
25. Kvale SB & Brinkmann S (2009) Interviews: Learning the Craft of Qualitative Research Interviewing. Sage Publications, Thousand Oaks CA.
26. Lindqvist R, Carlsson M & Sjoden PO (2000) Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients. Journal of Advanced Nursing 31, 1398-1408.
27. Lindseth A & Norberg A (2004) A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences 18, 145-153.
28. Logstrup KE (1997) The Ethical Demand. University of Notre Dame Press, Notre Dame.
29. Low J, Smith G, Burns A & Jones L (2008) The impact of end-stage kidney disease (ESKD) on close persons: a literature review. NDT Plus 2, 67-79.
30. Lundman B, Alex L, Jonsen E, Norberg A, Nygren B, Santamaki Fischer R & Strandberg G (2010) Inner strength-a theoretical analysis of salutogenic concepts. International Journal of Nursing Studies 47, 251-260.
31. Madar H, Gilad G, Elenhoren E & Schwarz L (2007) Dialysis nurses for palliative care. Journal of Renal Care 33, 35-38.
32. Murtagh FE, Addington-Hall J & Higginson IJ (2007) The prevalence of symptoms in end-stage renal disease: a systematic review. Advances in Chronic Kidney Disease 14, 82-99.
33. Noble H, Kelly D, Rawlings-Anderson K & Meyer J (2007) A concept analysis of renal supportive care: the changing world of nephrology. Journal of Advanced Nursing 59, 644-653.
34. Noble H, Kelly D & Hudson P (2013) Experiences of carers supporting dying renal patients managed without dialysis. Journal of Advanced Nursing, 69, 1829-1839.
35. Patton MQ (2002) Qualitative Research & Evaluation Methods. Sage, London.
36. Polaschek N (2003) The experience of living on dialysis: a literature review. Nephrology Nursing Journal 30(303-309), 313.
37. Ricoeur P (1976) Interpretation Theory: Discourse and the Surplus of Meaning. Texas Christian University Press, Forth Worth, Texas.
38. Saini T, Murtagh FE, Dupont PJ, McKinnon PM, Hatfield P & Saunders Y (2006) Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliative Medicine 20, 631-636.
39. Santoro D, Satta E, Messina S, Costantino G, Savica V & Bellinghieri G (2013) Pain in end-stage renal disease: a frequent and neglected clinical problem. Clinical Nephrology 79, 2-11.
40. Schneider RA (2004) Chronic renal failure: assessing the Fatigue Severity Scale for use among caregivers. Journal of Clinical Nursing 13, 219-225.
41. Scott DA, Valery PC, Boyle FM & Bain CJ (2002) Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma. Medical Journal of Australia 177, 507-510.
42. SNR (2012) Svenskt njurregister (Swedish Renal Registry) Annual Data Report. Available at: http://www.medscinet.net/snr/rapporterdocs/Årsrapport%202012.pdf (accessed 02 March 2013)
43. USRDS (2012). U S Renal Data System 2012, Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States. Available at: http://www.usrds.org/atlas.aspx (accessed 02 March 2013)
44. Weisbord SD, Carmody SS, Bruns FJ, Rotondi AJ, Cohen LM, Zeidel ML & Arnold RM (2003) Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrology Dialysis Transplantation 18, 1345-1352.
45. Weisbord SD, Fried LF, Arnold RM, Rotondi AJ, Fine MJ, Levenson DJ & Switzer GE (2004) Development of a symptom assessment instrument for chronic hemodialysis patients: the Dialysis Symptom Index. Journal of Pain Symptom Management 27, 226-240.
46. Weisbord SD, Fried LF, Arnold RM, Fine MJ, Levenson DJ, Peterson RA & Switzer GE (2005) Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. Journal of the American Society of Nephrology 16, 2487-2494.
47. White Y & Grenyer BF (1999) The biopsychosocial impact of end-stage renal disease: the experience of dialysis patients and their partners. Journal of Advanced Nursing 30, 1312-1320.
48. Williams BR, Woodby LL, Bailey FA & Burgio KL (2008) Identifying and responding to ethical and methodological issues in after-death interviews with next-of-kin. Death Studies 32, 197-236.
49. World Health Organization (2002) WHO Definition of Palliative Care. Available at: http://www.who.int/cancer/palliative/definition/en/ (accessed 12 May 2013).
50. Young S (2009) Rethinking and integrating nephrology palliative care: a nephrology nursing perspective. CANNT Journal 19, 36-44.
51. Ziegert K & Fridlund B (2001) Conceptions of life situation among next-of-kin of haemodialysis patients. Journal of Nursing Management 9, 231-239.
52. Ziegert K, Fridlund B & Lidell E (2006) Health in everyday life among spouses of haemodialysis patients: a content analysis. Scandinavian Journal of Caring Sciences 20, 223-228.
53. Ziegert K, Fridlund B & Lidell E (2009) "Time for dialysis as time to live": experiences of time in everyday life of the Swedish next of kin of hemodialysis patients. Nursing and Health Sciences 11, 45-50.