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BMC Palliative Care
Published in: BMC Palliative Care 1/2018

Open Access 01-12-2018 | Research article

Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care

Authors: Lisa Hjelmfors, Anna Strömberg, Maria Friedrichsen, Anna Sandgren, Jan Mårtensson, Tiny Jaarsma

Published in: BMC Palliative Care | Issue 1/2018

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Abstract

Background

The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention.

Methods

Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy.

Results

Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members.

Conclusions

In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
Literature
1.
McMurray JJ, Adamopoulos S, Anker SD, Auricchio A, Böhm M, Dickstein K, et al. ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology Developed in collaboration with the Heart Failure Association (HFA) of the ESC. Eur J Heart Fail. 2012;14(8):803–69.CrossRefPubMed
2.
Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P, et al. Palliative care in heart failure: a position statement from the palliative care workshop of the heart failure Association of the European Society of cardiology. Eur J Heart Fail. 2009;11(5):433–43.CrossRefPubMed
3.
Dickstein K, Cohen-Solal A, Filippatos G, McMurray JJ, Ponikowski P, Poole-Wilson PA, et al. ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2008: the Task Force for the diagnosis and treatment of acute and chronic heart failure 2008 of the European Society of Cardiology Developed in collaboration with the Heart Failure Association of the ESC (HFA) and endorsed by the European Society of Intensive Care Medicine (ESICM). Eur J Heart Fail. 2008;10(10):933–89.CrossRefPubMed
4.
National Institute for Health and Clinical Excellence. Chronic heart failure: management of chronic heart failure in adults in primary and secondary care. National Institute for Health and Clinical Excellence; 2010. Available from https://​www.​nice.​org.​uk/​guidance/​Cg108. Accessed 5 June 2018.
5.
Goodlin SJ, Quill TE, Arnold RM. Communication and decision-making about prognosis in heart failure care. J Card Fail. 2008;14(2):106–13.CrossRefPubMed
6.
Ørn S, Dickstein K. How do heart failure patients die? Eur Heart J Suppl. 2002;4(suppl_D):D59–65.
7.
van Deursen VM, Urso R, Laroche C, Damman K, Dahlström U, Tavazzi L, et al. Co-morbidities in patients with heart failure: an analysis of the European heart failure pilot survey. Eur J Heart Fail. 2014;16(1):103–11.CrossRefPubMed
8.
Ponikowski P, Voors AA, Anker SD, Bueno H, Cleland JG, Coats AJ, et al. 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC) Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. Eur Heart J. 2016;37(27):2129–200.CrossRefPubMed
9.
Allen LA, Stevenson LW, Grady KL, Goldstein NE, Matlock DD, Arnold RM, et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation. 2012;125(15):1928–52.CrossRefPubMedPubMedCentral
10.
Strömberg A, Jaarsma T. Thoughts about death and perceived health status in elderly patients with heart failure. Eur J Heart Fail. 2008;10(6):608–13.CrossRefPubMed
11.
Friesinger GC, Butler J. End-of-life care for elderly patients with heart failure. Clin Geriatr Med. 2000;16(3):663–75.CrossRef
12.
Barclay S, Momen N, Case-Upton S, Kuhn I, Smith E. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Br J Gen Pract. 2011;61(582):e49–62.CrossRefPubMed
13.
Momen NC, Barclay SI. Addressing ‘the elephant on the table’: barriers to end of life care conversations in heart failure - a literature review and narrative synthesis. Curr Opin Support Palliat Care. 2011;5(4):312–6.CrossRefPubMed
14.
Hjelmfors L, Strömberg A, Friedrichsen M, Mårtensson J, Jaarsma T. Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses’ perspectives. Eur J Cardiovasc Nurs. 2014;13(2):152–61.CrossRefPubMed
15.
Hjelmfors L, van der Wal MH, Friedrichsen MJ, Mårtensson J, Strömberg A, Jaarsma T. Patient-nurse communication about prognosis and end-of-life care. J Palliat Med. 2015;18(10):865–71.CrossRefPubMed
16.
17.
van der Wal MH, Hjelmfors L, Mårtensson J, Friedrichsen M, Strömberg A, Jaarsma T. Variables related to communication about prognosis between nurses and patients at heart failure clinics in Sweden and the Netherlands. J Cardiovasc Nurs. 2017;
18.
19.
van der Wal MH, Hjelmfors L, Mårtensson J, Friedrichsen M, Strömberg A, Jaarsma T. Variables related to communication about prognosis between nurses and patients at heart failure clinics in Sweden and the Netherlands. Journal of Cardiovascular Nursing. 2018;33(2):E1–6.
20.
21.
Borgstrom E, Barclay S. Experience-based design, co-design and experience-based co-design in palliative and end-of-life care. BMJ Support Palliat Care. 2017;0:1–7.
22.
23.
Sanders EB, Stappers PJ. Co-creation and the new landscapes of design. Co-design. 2008;4(1):5–18
24.
Benzein EG, Hagberg M, Saveman BI. ‘Being appropriately unusual’: a challenge for nurses in health-promoting conversations with families. Nurs Inq. 2008;15(2):106–15.CrossRefPubMed
25.
Wilkinson S, Perry R, Blanchard K, Linsell L. Effectiveness of a three-day communication skills course in changing nurses’ communication skills with cancer/palliative care patients: a randomised controlled trial. Palliat Med. 2008;22(4):365–75.CrossRefPubMed
26.
Clayton J, Butow P, Tattersall M, Chye R, Noel M, Davis J, et al. Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients. Br J Cancer. 2003;89(11):2069.CrossRefPubMedPubMedCentral
27.
Knowles MS, Holton IIIEF, Swanson RA. The adult learner: the definitive classic in adult education and human resource development: Routledge; 2014.
28.
Blackwell RW, Lowton K, Robert G, Grudzen C, Grocott P. Using experience-based co-design with older patients, their families and staff to improve palliative care experiences in the emergency department: a reflective critique on the process and outcomes. Int J Nurs Stud. 2017;68:83–94.CrossRefPubMed
29.
Sansoni JE, Grootemaat P, Duncan C. Question prompt lists in health consultations: a review. Routledge: Patient Educ Couns. 2015;98(12):1454–64.
30.
Martinali J, Bolman C, Brug J, van den Borne B, Bar F. A checklist to improve patient education in a cardiology outpatient setting. Patient Educ Couns. 2001;42(3):231–8.CrossRefPubMed
31.
Bolman C, Brug J, Bär F, Martinali J, van den Borne B. Long-term efficacy of a checklist to improve patient education in cardiology. Patient Educ Couns. 2005;56(2):240–8.CrossRefPubMed
32.
Fluur C, Bolse K, Strömberg A, Thylén I. Patients’ experiences of the implantable cardioverter defibrillator (ICD); with a focus on battery replacement and end-of-life issues. Heart & Lung: The Journal of Acute and Critical Care. 2013;42(3):202–7.CrossRefPubMed
33.
Skarman G. Handledning för professionell utveckling: Liber; 2011.
34.
Barrows HS. Problem-based learning: an approach to medical education. New York: Springer publishing company; 1980.
35.
Aidemark J, Askenäs L, Nygårdh A, Strömberg A. User involvement in the co-design of self-care support systems for heart failure patients. Stockhom: Procedia Computer Science. 2015;64:118–24.
Metadata
Title
Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
Authors
Lisa Hjelmfors
Anna Strömberg
Maria Friedrichsen
Anna Sandgren
Jan Mårtensson
Tiny Jaarsma
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-018-0340-2

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