The psychosocial experience of patients with end-stage renal disease and its impact on quality of life: findings from a needs assessment to shape a service

Jennifer Finnegan-John, Veronica J Thomas, Jennifer Finnegan-John, Veronica J Thomas

Abstract

Background. A needs assessment was conducted on renal patients registered to a leading hospital trust in London in order to explore their psychological, social, and spiritual needs. The aim of the needs assessment was to create an evidence base for the development of a comprehensive health psychology service to run concurrently with a renal counselling support service within the department. Methodology. This study utilised a series of semistructured face-to-face interviews and focus groups with renal patients and their carers, to explore how ESRD impacted quality of life. Results. A thematic analysis was undertaken. Seven emergent themes were identified that influenced the quality of life of people with EDRD: physiological impact, impact of treatment, impact on daily life, psychological impact, impact on relationships, social impact and coping responses. Conclusion. The needs assessment clearly identified that ESRD carries with it emotional, physical, psychological, social, and existential burdens. The data from this needs assessment study has created an evidence base upon which future health psychology services can be built within this leading UK hospital.

References

    1. Kimmel PL, Peterson RA, Weihs KL, et al. Psychosocial factors, behavioral compliance and survival in urban hemodialysis patients. Kidney International. 1998;54(1):245–254.
    1. Christensen AJ, Ehlers SL. Psychological factors in end-stage renal disease: an emerging context for behavioral medicine research. Journal of Consulting and Clinical Psychology. 2002;70(3):712–724.
    1. Kimmel PL, Thamer M, Richard CM, Ray NF. Psychiatric illness in patients with end-stage renal disease. American Journal of Medicine. 1998;105(3):214–221.
    1. Israel M. Depression in dialysis patients: a review of psychological factors. Canadian Journal of Psychiatry. 1986;31(5):445–451.
    1. Kimmel PL. Psychosocial factors in dialysis patients. American Journal of Kidney Diseases. 2001;34:244–266.
    1. Levenson JL, Glocheski S. Psychological factors affecting end-stage renal disease. A review. Psychosomatics. 1991;32(4):382–389.
    1. Chilcot J, Wellsted D, Farrington K. Depression in end-stage renal disease: current advances and research. Seminars in Dialysis. 2010;23(1):74–82.
    1. Kessler RC, Berglund P, Demler O, et al. The epidemiology of major depressive disorder: results from the National Comorbidity Survey Replication (NCS-R) Journal of the American Medical Association. 2003;289(23):3095–3105.
    1. DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine. 2000;160(14):2101–2107.
    1. Gregory DM, Way CY, Hutchinson TA, Barrett BJ, Parfrey PS. Patients’ perceptions of their experiences with ESRD and hemodialysis treatment. Qualitative Health Research. 1998;8(6):764–783.
    1. Chilcot J, Wellsted D, Farrington K. Illness representations are associated with fluid nonadherence among hemodialysis patients. Journal of Psychosomatic Research. 2010;68(2):203–212.
    1. Mittal SK, Ahern L, Flaster E, Maesaka JK, Fishbane S. Self-assisted physical and mental function of haemodialysis patients. Nephrology Dialysis Transplantation. 2001;16(7):1387–1394.
    1. Chilcot J, Wellsted D, Farrington K. Illness perceptions predict survival in haemodialysis patients. American Journal of Nephrology. 2011;33(4):358–363.
    1. Griva K, Jayasena D, Davenport A, Harrison M, Newman SP. Illness and treatment cognitions and health related quality of life in end stage renal disease. British Journal of Health Psychology. 2009;14(1):17–34.
    1. World Health Organisation, “Measuring Quality of Life”, , 1997.
    1. Curtin RB, Mapes D, Petillo M, Oberley PE. Long-term dialysis survivors: a transformational experience. Qualitative Health Research. 2002;12(5):609–624.
    1. Cvengros JA, Christensen AJ, Lawton WJ. Health locus of control and depression in chronic kidney disease: a dynamic perspective. Journal of Health Psychology. 2005;10(5):677–686.
    1. Tsay SL, Hung LO. Empowerment of patients with end-stage renal disease-a randomized controlled trial. International Journal of Nursing Studies. 2004;41(1):59–65.
    1. Thomas NT. Renal Nursing. 2nd edition. London, UK: Baillière Tindall; 2002.
    1. Muringai T, Noble H, McGowan A, Channey M. Dialysis access and the impact on body image: role of the nephrology nurse. British Journal of Nursing. 2008;17(6):362–366.
    1. Rosas SE, Joffe M, Franklin E, et al. Prevalence and determinants of erectile dysfunction in hemodialysis patients. Kidney International. 2001;59(6):2259–2266.
    1. Coelho-Marques FZ, Wagner MB, Poli De Figueiredo CE, D’Avila DO. Quality of life and sexuality in chronic dialysis female patients. International Journal of Impotence Research. 2006;18(6):539–543.
    1. Low J, Smith G, Burns A, Jones L. The impact of end-stage kidney disease (ESKD) on close persons: a literature review. NDT Plus. 2008;1(2):67–79.
    1. National Service Framework for Renal Services, Part 2, Department of Health, , 2005.
    1. NICE, Health Needs Assessment: A Practical Guide, Sue Cavanaugh and Keith Chadwick, , 2005.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101.
    1. Cukor D, Cohen SD, Peterson RA, Kimmen PL. Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness. Journal of the American Society of Nephrology. 2007;18(12):3042–3055.
    1. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain and Symptom Management. 2006;31(1):58–69.
    1. Janssen DJA, Spruit MA, Wouters EFM, Schols JMGA. Daily symptom burden in end-stage chronic organ failure: a systematic review. Palliative Medicine. 2008;22(8):938–948.
    1. World Health Organisation Group. The world health organization quality of life assessment (WHOQOL): position paper from the world health organization. Social Science and Medicine. 1995;41(10):1403–1409.
    1. Skevington SM. Quality of life assessments in arthritis. In: Orley J, Kuyken W, editors. Quality of Life Assessment: International Perspectives. Berlin, Germany: Springer; 1994. pp. 151–160.
    1. NICE clinical guideline 91: Depression in adults with a chronic physical health problem (CG91) October 2009, .
    1. Department of Health; December 2009. Achieving excellence in kidney care: Delivering the National Services Framework for Renal Services, , 2012.

Source: PubMed

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