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Emotional Support and Well-Being of Adults with Congenital Heart Disease (ACHD): Contributions of a Specialist Nursing Service

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DOI: 10.4236/ojn.2015.512120    3,619 Downloads   4,163 Views   Citations

ABSTRACT

Living with a congenital heart condition can require a daunting and uncertain patient journey during which the support of a specialist nursing service is vital. A descriptive, cross-sectional evaluation completed over two years, utilised a postal questionnaire to investigate patient’s satisfaction with aspects of service. Qualitative responses to open questions on satisfaction with emotional support (n = 103) and contributions to well-being (n = 90) were analysed using a framework approach which identified eight themes. Professional knowledge and expertise, service accessibility, caring attributes, enabling patients to cope with anxiety, depression and meeting changing needs contributed positively to both patient well-being and emotional support. Family support was influential on emotional support alone, whilst mediating medical liaison exerted an impact on well-being by enhancing feelings of security. In conclusion, the specialist nursing service contributed positively to well-being and emotional support of patients and thereby to selective aspects of continuity of care.

Conflicts of Interest

The authors declare no conflicts of interest.

Cite this paper

Hatchett, R. , McLaren, S. and Kennedy, F. (2015) Emotional Support and Well-Being of Adults with Congenital Heart Disease (ACHD): Contributions of a Specialist Nursing Service. Open Journal of Nursing, 5, 1133-1141. doi: 10.4236/ojn.2015.512120.

References

[1] Marelli, A.J., Mackie, A.S., Ionescu-Ittu, R., Rahme, E. and Pilote, L. (2007) Congenital Heart Disease in the General Population: Changing Prevalence and Age Distribution. Circulation, 115, 163-172.
http://dx.doi.org/10.1161/CIRCULATIONAHA.106.627224
[2] Verhengt, C.L., Uiterwaal, C.S.P.M., Van der Velde, E.T., Pieper, P.G., Van Dijk, A.P.J., Vliegen, H.W., Grobbee, D.E. and Mulder, B.J.M. (2010) Mortality in Adult Congenital Heart Disease. European Heart Journal, 31, 1220-1229.
http://dx.doi.org/10.1093/eurheartj/ehq032
[3] Grobbee, D.E., Mulder, B.J., Uiterwaal, C.S.P.M., Meijboom, F.J., Plokker, H.W., Van Der Velde, E.T., Verhengt, C.L., Pieper, P.G. and Sieswerda, G.T. (2010) Emerging Burden of Hospital Admission of Adults with CHD. Heart, 96, 872-878.
http://dx.doi.org/10.1136/hrt.2009.185595
[4] Negishi, J., Ohuchi, H., Yasuda, K., Miyazaki, A., Norifumi, N. and Yamada, O. (2015) Unscheduled Hospital Admission in Adults with CHD. Korean Circulatory Journal, 45, 59-66.
http://dx.doi.org/10.4070/kcj.2015.45.1.59
[5] British Cardiac Society (2002) Grown Up Congenital Heart (GUCH) Disease: Current Needs and Provision of Services for Adolescents and Adults with Congenital Heart Disease in the UK. A Report of the British Cardiac Society Working Party. Heart, 88, 1-14.
[6] Department of Health (2006) Adult Congenital Heart Disease: A Commissioning Guide for Services for Young People and Grown Ups with Congenital Heart Disease (GUCH). HMSO, London.
[7] British Heart Foundation (2010) Transparency in Outcomes: A Framework for the NHS.
http://www.bhf.org.uk
[8] Moons, P. (2005) Nurse Specialists in Adult Congenital Heart Disease: The Current Status in Europe. European Journal of Cardiovascular Nursing, 5, 60-67.
http://dx.doi.org/10.1016/j.ejcnurse.2005.10.010
[9] Moons, P., Canobbio, M.M. and Harrison, J. (2006) The International Adult CHD Network: Coming Together for the Future. Progress in Cardiovascular Nursing, 21, 94-96.
http://dx.doi.org/10.1111/j.0889-7204.2006.04971.x
[10] Vernon, S., Finch, M. and Lyon, J. (2011) Adult Congenital Heart Disease: The Nurse Specialists Role. British Journal of Cardiac Nursing, 6, 88-91.
http://dx.doi.org/10.12968/bjca.2011.6.2.88
[11] Ladouceur, M., Iserin, L., Cohen, S., Legendre, A., Boudjemline, Y. and Bonnet, D. (2013) Key Issues of Daily Life in Adults with Congenital Heart Disease. Archives of Cardiovascular Diseases, 106, 404-412.
http://dx.doi.org/10.1016/j.acvd.2013.02.004
[12] Leary, A. and Oliver, S. (2010) Clinical Nurse Specialist: Adding Value to Care: An Executive Summary. Royal College of Nursing Publications, London.
[13] Griffiths, L., Habibi, H., Kennedy, F., Lyon, J., Quirk, J. and Vernon, S. (2015) ACHD Nursing: Guidance on Roles, Career Pathways and Competence Development. Royal College of Nursing Publications, London.
[14] The Kings Fund London: Point of Care Programme (2013)
http://www.kingsfund.org.uk/projects/point-of-care/about
[15] Kamphuis, M., Verloove-Van Horich, S.P., Ottenkamp, J., Vliegen, H.W. and Vogels, T. (2002) Disease Related Difficulties and Satisfaction with Levels of Knowledge in Adults with Mild or Complex Congenital Heart Disease. Cardiology in the Young, 12, 266-271.
http://dx.doi.org/10.1017/S1047951102000574
[16] Moons, P., Van Deyk, K., Marquet, K., De Bleser, L. and Budts, W. (2009) Profile of Adults with Congenital Heart Disease Having a Good, Moderate or Poor Quality of Life: A Cluster Analytic Study. European Journal of Cardiovascular Nursing, 8, 151-157.
http://dx.doi.org/10.1016/j.ejcnurse.2008.11.001
[17] Vigl, M., Niggemayer, E., Hager, A., Schwedler, G., Kropf, S. and Bauer, U. (2011) The Importance of Socio-Demographic Factors for Quality of Life of Adults with Congenital Heart Disease. Quality of Life Research, 20, 169-177.
http://dx.doi.org/10.1007/s11136-010-9741-2
[18] Van Rijen, E.H.M., Utens, E.M.W.J., Roos-Hesselink, J.W., Meijboom, F.J., Van Domburg, R.T., Roelandt, J.R.T.C., Bogers, A.J.J.C. and Verhulst, F.C. (2004) Medical Predictors for Psychopathology in Adults with Operated Congenital Heart Disease. European Heart Journal, 25, 1605-1613.
[19] Bromberg, J.I., Beasley, P.J., D’Angelo, E.J. and Landzberg, M. (2003) Depression and Anxiety in Adults with Congenital Heart Disease: A Pilot Study. Heart Lung, 32, 105-110.
http://dx.doi.org/10.1067/mhl.2003.26
[20] Eslami, B., Sundin, O., Macassa, G., Khankeh, H.R. and Soares, J.J. (2013) Anxiety, Depressive and Somatic Symptoms in Adults with Congenital Heart Disease. Journal of Psychosomatic Research, 74, 49-56.
http://dx.doi.org/10.1016/j.jpsychores.2012.10.006
[21] Centres for Disease Control and Prevention (2013) Health Related Quality of Life. Well-Being Concepts.
http://www.cdc.gov/hrqol/wellbeing.htm
[22] Dodge, R., Daly, A.P., Huyton, J. and Sanders, L.D. (2013) The Challenge of Defining Well-Being. International Journal of Wellbeing, 2, 222-235.
http://dx.doi.org/10.5502/ijw.v2i3.4
[23] Cruickshank, S., Kennedy, C., Lockhart, K., Dosser, I. and Dallas, L. (2008) Specialist Breast Care Nurses for Supportive Care of Women with Breast Cancer. Cochrane Database of Systematic Reviews, No. 1, Article No. CD005634.
http://dx.doi.org/10.1002/14651858.cd005634.pub2
[24] Lloyd Jones, M. (2005) Role Development and Effective Practice in Specialist and Advanced Practice Roles in Acute Hospital Settings: Systematic Review and Meta-Synthesis. Journal of Advanced Nursing, 49, 191-209.
http://dx.doi.org/10.1111/j.1365-2648.2004.03279.x
[25] Loveman, E., Royle, P. and Waugh, N. (2003) Specialist Nurses in Diabetes Mellitus. Cochrane Database of Systematic Reviews, No. 2, Article No. CD003286.
http://dx.doi.org/10.1002/14651858.cd003286
[26] Belling, R., McLaren, S. and Woods, L.P. (2009) Specialist Nursing Interventions for Inflammatory Bowel Disease. Cochrane Database of Systematic Reviews, No. 4, Article No. CD006597.
http://dx.doi.org/10.1002/14651858.cd006597.pub2
[27] Begley, C., Elliott, N., Lalor, J., Coyne, I., Higgins, A. and Comiskey, C.M. (2013) Differences between Clinical Specialist and Advanced Practitioner Clinical Practice, Leadership, and Research Roles, Responsibilities, and Perceived Outcomes (The SCAPE Study). Journal of Advanced Nursing, 69, 1323-1337.
http://dx.doi.org/10.1111/j.1365-2648.2012.06124.x
[28] Begley, C., Murphy, K., Higgins, A., Elliott, N., Lalor, J., Sheerin, F., et al. (2010) Evaluation of Clinical Nurse and Midwife Specialist and Advanced Nurse and Midwife Practitioner Roles in Ireland (SCAPE) Final Report. National Council for the Professional Development of Nursing and Midwifery in Ireland, Dublin.
[29] Corner, J., Halliday, D., Haviland, J., Douglas, H.R., Bath, P., Clark, D., et al. (2003) Exploring Nursing Outcomes for Patients with Advanced Cancer Following Intervention by Macmillan Specialist Palliative Care Nurses. Journal of Advanced Nursing, 41, 561-574.
http://dx.doi.org/10.1046/j.1365-2648.2003.02568.x
[30] Aspinal, F., Gridley, K., Bernard, S. and Parker, G. (2012) Promoting Continuity of Care for People with Long-Term Neurological Conditions: The Role of the Neurology Nurse Specialist. Journal of Advanced Nursing, 68, 2309-2319.
http://dx.doi.org/10.1111/j.1365-2648.2011.05928.x
[31] Waibel, S., Henao, D., Aller, M.B., Vargas, I. and Vázquez, M.L. (2012) What Do We Know about Patients’ Perceptions of Continuity of Care? A Meta-Synthesis of Qualitative Studies. International Journal for Quality in Health Care, 24, 39-48.
http://dx.doi.org/10.1093/intqhc/mzr068
[32] Freeman, G., Shepperd, S., Robinson, I., Ehrich, K. and Richards, S. (2002) Continuity of Care: Report of a Scoping Exercise for the NCCSDO. NCCSDO, London.
[33] Hatchett, R., McLaren, S., Corrigan, P. and Filer, L. (2015) Evaluation of a Specialist Nursing Service for Adult Patients with Congenital Heart Disease. International Journal of Nursing Practice, 21, 556-565.
[34] Ritchie, J. and Spencer, L. (1994) Qualitative Data Analysis for Applied Policy Research. In: Bryman, A., Burgess, R.G., Eds., Analyzing Qualitative Data, Routledge, New York, 173-194.
http://dx.doi.org/10.4324/9780203413081_chapter_9
[35] Astedt-Kurki, P., Lehti, K., Tarkka, M.T. and Paavilainen, E. (2004) Determinants of Perceived Health in Families of Patients with Heart Disease. Journal of Advanced Nursing, 48, 115-123.
http://dx.doi.org/10.1111/j.1365-2648.2004.03178.x

  
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