Supporting shared decision-making for older people with multiple health and social care needs: a protocol for a realist synthesis to inform integrated care models

Frances Bunn, Claire Goodman, Jill Manthorpe, Marie-Anne Durand, Isabel Hodkinson, Greta Rait, Paul Millac, Sue L Davies, Bridget Russell, Patricia Wilson, Frances Bunn, Claire Goodman, Jill Manthorpe, Marie-Anne Durand, Isabel Hodkinson, Greta Rait, Paul Millac, Sue L Davies, Bridget Russell, Patricia Wilson

Abstract

Introduction: Including the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models.

Methods and analysis: The synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction.

Ethics and dissemination: Ethics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting.

Keywords: Older people; Shared decision making; long term conditions; multimorbidity; realist synthesis.

Conflict of interest statement

All authors have completed the ICMJE uniform disclosure form at http://www.icmje.org/coi_disclosure.pdf and declare: Professor Goodman received personal fees from the National Institute for Health Research (NIHR) during the conduct of the study, all others report no financial relationships with any organisations that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

References

    1. Jamieson M, Grealish L, Brown J-A et al. . Carers: The navigators of the maze of care for people with dementia—a qualitative study. Dementia 2016;15:1112–23. 10.1177/1471301214554930
    1. Guthrie B, Saultz JW, Freeman GK et al. . Continuity of care matters. BMJ 2008;337:a867 10.1136/bmj.a867
    1. Sansoni JE, Grootemaat PE, Seraji HR et al. . Targeting integrated care to those most likely to need frequent health care: a review of social and clinical risk factors. Sax Institute, Australia, 2015). pdf_file/0008/274742/Evidence_Check_Targeting_integrated_care_Social_and_clinical_ risk_factors.pdf
    1. Shaw S, Rosen R, Rumbold B.2011. An overview of integrated care in the NHS. What is integrated care?: Nuffield Trust. .
    1. Natioanal Collaboration for Integrated Care and Support. Integrated care and support: our shared committment 2013.
    1. NHS England. Five year forward view. 2014.
    1. Goodwin N, Smith J, Davies A et al. . Integrated care for patients and populations: improving outcomes by working together. The Kings Fund, 2011. (accessed 25 Nov 2014).
    1. Dowrick A, Southern A. Dementia 2014: Opportunity for change. In: Society As, ed. London: (accessed 21 Mar 2015).2014.
    1. Field S. NHS Future Forum: Summary report on proposed changes to the NHS. 2011. (accessed on 22nd April 2015).
    1. Coulter A, Collins A. Making shared decision-making a reality No decision about me, without me. The Kings Fund, 2011.
    1. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681–92. 10.1016/S0277-9536(96)00221-3
    1. DH. Equity and excellence: liberating the NHS 2010. .
    1. Stacey D, Légaré F, Col Nananda F et al. . Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;(1):CD001431 .
    1. Da Silva D. Helping people share decision making a review of evidence considering whether shared decision making is worthwhile. The Health Foundation, 2012.
    1. Elwyn G, Scholl I, Tietbohl C et al. . “Many miles to go…”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC Med Inform Decis Mak 2013;13(Suppl 2):S14.. 10.1186/1472-6947-13-S2-S14
    1. Banerjee S. Multimorbidity—older adults need health care that can count past one. Lancet 2014;385(9968):587–9. 10.1016/S0140-6736(14)61596-8
    1. Bunn F, Goodman C, Brayne C et al. . Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem). Health services and delivery research 2016;4(8): .
    1. Leppin A, Montori V, Gionfriddo M. Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. Healthcare 2015;3:50–63. 10.3390/healthcare3010050
    1. Gagnon LM, Patten SB. Major depression and its association with long-term medical conditions. Can J Psychiatry 2002;47: 149–52.
    1. Freeman GK, Woloshynowych M, Baker R et al. . Continuity of care 2006: What have we learned since 2000 and what are policy imperatives now. London: National Coordinating Center for NHS Service Delivery and Organisation R & D (NCCSDO), 2007.
    1. Bunn F, Burn AM, Goodman C et al. . Comorbidity and dementia: a scoping review of the literature. BMC Med 2014;12:192 10.1186/s12916-014-0192-4
    1. Dixon-Woods M, Cavers D, Agarwal S et al. . Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol 2006;6:35 10.1186/1471-2288-6-35
    1. Frampton S, Guastello S, Brady C et al. . Patient-centered care: Improvement guide. Derby, CT: and Camden, ME: Planetree, Inc/Picker Institute, 2008. (accessed 24 Nov 2014).
    1. Hannan R, Thompson R, Worthington A et al. . The triangle of care. Carers included: a guide to best practice for dementia care. Carers Trust, 2013. (accessed 25 Nov 2014).
    1. Johnson B, Abraham M, Conway J et al. . Partnering with patients and families to design a patient- and family- centered health care system. Institute for Patient- and Family-Centered Care and Institute for Healthcare Improvement 2008. (accessed 22 Apr 2015).
    1. Sinclair A, Morley JE, Rodriguez-Manas L et al. . Diabetes mellitus in older people: position statement on behalf of the International Association of Gerontology and Geriatrics (IAGG), the European Diabetes Working Party for Older People (EDWPOP), and the International Task Force of Experts in Diabetes. J Am Med Dir Assoc 2012;13:497–502. 10.1016/j.jamda.2012.04.012
    1. Sinclair AJ, Hillson R, Bayer AJ et al. . Diabetes and dementia in older people: a best clinical practice statement by a multidisciplinary National Expert Working Group. Diabet Med 2014;31:1024–31. 10.1111/dme.12467
    1. Demain S, Goncalves AC, Areia C et al. . Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research. PLoS ONE 2015;10:e0125457 10.1371/journal.pone.0125457
    1. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ 2009;339:b2803 10.1136/bmj.b2803
    1. Ridgeway JL, Egginton JS, Tiedje K et al. . Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Prefer Adherence 2014;8: 339–51. 10.2147/PPA.S58014
    1. Goodman C, Drennan V, Manthorpe J et al. . A study of the effectiveness of inter professional working for community dwelling older people Final Report. In: NIHR Service, Delivery, and, organisation, programme. ed. 2011.
    1. Hardwick R, Pearson M, Byng R et al. . The effectiveness and cost-effectiveness of shared care: protocol for a realist review. Syst Rev 2013;2:12 10.1186/2046-4053-2-12
    1. Pawson R, Greenhalgh T, Harvey G et al. . Realist review--a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy 2005;10(Suppl 1): 21–34. 10.1258/1355819054308530
    1. Rycroft-Malone J, McCormack B, Hutchinson AM et al. . Realist synthesis: illustrating the method for implementation research. Implement Sci 2012;7:33 10.1186/1748-5908-7-33
    1. Wong G, Greenhalgh T, Westhorp G et al. . RAMESES publication standards: realist syntheses. BMC Med 2013;11:21 10.1186/1741-7015-11-21
    1. Kastner M, Estey E, Perrier L et al. . Understanding the relationship between the perceived characteristics of clinical practice guidelines and their uptake: protocol for a realist review. Implement Sci 2011;6:1–9.
    1. Elwyn G, Edwards A, Kinnersley P et al. . Shared decision-making and the concept of equipoise: the competences of involving patients in healthcare choices. Br J Gen Pract 2000;50:892–9.
    1. Barry MJ, Edgman-Levitan S. Shared decision making—the pinnacle of patient-centered care. N Engl J Med 2012;366:780–1. 10.1056/NEJMp1109283
    1. Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns 2006;60:301–12. 10.1016/j.pec.2005.06.010
    1. Légaré F, Stacey D, Gagnon S et al. . Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study. J Eval Clin Pract 2011;17: 554–64. 10.1111/j.1365-2753.2010.01515.x
    1. Légaré F, Stacey D, Pouliot S et al. . Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care 2011;25:18–25. 10.3109/13561820.2010.490502
    1. Durand MA, Carpenter L, Dolan H et al. . Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS ONE 2014;9:e94670 10.1371/journal.pone.0094670
    1. Pearce C, Bainbridge M. A personally controlled electronic health record for Australia. J Am Med Inform Assoc 2014;21:707–13. 10.1136/amiajnl-2013-002068
    1. Farrelly S, Brown Gill E, Flach C et al. . User-held personalised information for routine care of people with severe mental illness. Cochrane Database Syst Rev 2013;(10):CD001711
    1. Detmer D, Bloomrosen M, Raymond B et al. . Integrated personal health records: transformative tools for consumer-centric care. BMC Med Inform Decis Mak 2008;8:45 10.1186/1472-6947-8-45
    1. Wilson PM, Kendall S, Brooks F. The Expert Patients Programme: a paradox of patient empowerment and medical dominance. Health Soc Care Community 2007;15:426–38. 10.1111/j.1365-2524.2007.00701.x
    1. Wilson PM, Kendall S, Brooks F. Nurses’ responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study. Int J Nurs Stud 2006;43:803–18. 10.1016/j.ijnurstu.2005.10.011
    1. Johnson M, Tod AM, Brummell S et al. . Prognostic communication in cancer: a critical interpretive synthesis of the literature. Eur J Oncol Nurs 2015;19:554–67. 10.1016/j.ejon.2015.03.001
    1. Bélanger E, Rodríguez C, Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med 2011;25:242–61. 10.1177/0269216310389348
    1. Freeman G, Hughes J. Continuity of care and the patient experience. London: The Kings Fund, 2010. (accessed 16 Apr 2015).
    1. Parker G, Corden A, Heaton J. Experiences of and influences on continuity of care for service users and carers: synthesis of evidence from a research programme. Health Soc Care Community 2011;19:576–601. 10.1111/j.1365-2524.2011.01001.x
    1. Goodman C, Rycroft Malone J, Norton C et al. . Reducing and managing faecal incontinence in people with advanced dementia who are resident in care homes: protocol for a realist synthesis. BMJ open 2015;5:e007728 10.1136/bmjopen-2015-007728
    1. Bunn F, Goodman C, Trivedi D et al. . Managing diabetes in people with dementia. A realist synthesis: NIHR 13/138, 2015.
    1. Pawson R, Greenhalgh T, Harvey G et al. . Realist synthesis: an introduction. ESRC Research Methods Programme. Manchester: University of Manchester, 2004.
    1. Dixon-Woods M. Searching for studies in complex areas. 2006.
    1. Greenhalgh T, Peacock R. Effectiveness and efficiency of search methods in systematic reviews of complex evidence: audit of primary sources. BMJ 2005;331:1064–5. 10.1136/bmj.38636.593461.68
    1. Pawson R. Evidence-based policy: a realist perspective. Sage publications, 2006.
    1. Rycroft-Malone J, Burton CR, Williams L et al. . Improving skills and care standards in the support workforce for older people: a realist synthesis of workforce development interventions. Health Ser Deliv Res 2016;4:37–48. 10.3310/hsdr04120

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