Open Access
Subscription Access
What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review.
Abstract
Introduction: Growing numbers of people now live with long-term conditions. For each person, the challenges are multiple and unique to that individual. In recognition of this, health policy places greater emphasis on the delivery of person-centred care (PCC). However, patients report declining levels of such care. One reason for this may be a mismatch between patient and professional/policy understanding of PCC.
Aim: To understand PCC from the perspectives of people with long-term conditions.
Methods: A systematic review of qualitative literature was conducted. Databases searched included ASSIA, BNI, CINAHL, the Cochrane Library, Embase, Medline, PsycINFO, PubMed, Scopus, Web of Science, and grey literature databases. Two reviewers independently screened and selected the studies, assessed their quality and extracted data. Fifty-four records were analysed through meta-ethnography.
Results: Four themes emerged: the healthcare system as a battlefield, the healthcare system as a maze, patients’ accounts of personhood and the importance of patient enablement. A person-centred healthcare system is described by this review as one that values personhood and enables patients to build knowledge with their clinician in order to manage their illness in a safe, caring and accessible environment.
Conclusion: PCC does not depend on the efforts of the clinician alone, but results from a collaboration with the patient and needs to be enabled by the wider organisational and educational systems. Efforts directed at the implementation of PCC might be bound to fail if the healthcare policy agenda does not address the role of the patient’s personhood in clinical practice and its integration in educational settings.Keywords
References
Wade, D.T. & Halligan, P.W. (2004). Do biomedical models of illness make for good healthcare systems? British Medical Journal 329 (7479) 1398-1401.
Tinetti, M.E. & Fried, T. (2004). The end of the disease era. American Journal of Medicine 116 (3) 179-185.
May, C.R., Eton, D.T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., Mair, F.S., May, C.M., Montori, V.M., Richardson, A. et al. (2014). Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14 (1) 281.
Burton, C.D., Entwistle, V.A., Elliott, A.M., Krucien, N., Porteous, T. & Ryan, M. (2017). The value of different aspects of person-centred care: a series of discrete choice experiments in people with long-term conditions. BMJ Open 7 (4) 1-10.
Cloninger, C.R. (2013). Person-centered health promotion in chronic disease. International Journal of Person Centered Medicine 3 (1) 5-12.
Mathers, N. & Payton, D. (2016). Rhetoric and reality in person-centred care: introducing the House of Care framework. British Journal of General Practice 66 (642) 12-13.
Wood, S., Collins, A. & Taylor, A. (2015). Is the NHS becoming more person-centred? Available at: https://www.health.org.uk/sites/health/files/IsTheNHSBecomingMorePersonCentred.pdf (last accessed 14 October 2019).
Young, B. & Roberts, S. (2011). Year of Care Report of findings from the pilot programme. London: Diabetes UK.
NHS England, Care Quality Commission, Health Education England, Monitor, Public Health England, Trust Development Authority. (2014). NHS five year forward view. London: NHS England. Available at: https://www.england.nhs.uk/publication/nhs-five-year-forward-view/ (last accessed 14 October 2019).
National Voices. (2017). Person-centred care in 2017. Evidence from service users. Available at: https://www.nationalvoices.org.uk/publications/our-publications/person-centred-care-2017 (last accessed 14 October 2019).
Kvåle, K. & Bondevik, M. (2008). What is important for patient centred care? A qualitative study about the perceptions of patients with cancer. Scandinavian Journal of Caring Sciences 22 (4) 582-589.
Sinfield, P., Baker, R., Agarwal, S. & Tarrant, C. (2008). Patient-centred care: what are the experiences of prostate cancer patients and their partners? Patient Education and Counseling 73 (1) 91-96.
Little, P., Everitt, H., Williamson, I., Warner, G., Moore, M., Gould, C., Ferrier, K. & Payne, S. (2001). Preferences of patients for patient centred approach to consultation in primary care: observational study. British Medical Journal 322, 1-7.
Tong, A., Flemming, K., McInnes, E., Oliver, S. & Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology 12, 181.
Moher, D., Liberati, A., Tetzlaff, J. & Altman, D.G. (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of Internal Medicine 151 (4) 264-269.
Noblit, G.W. & Hare, R.D. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: Sage.
Toye, F., Seers, K., Allcock, N., Briggs, M., Carr, E., Andrews, J. & Barker, K. (2013). ‘Trying to pin down jelly’-exploring intuitive processes in quality assessment for meta-ethnography. BMC Medical Research Methodology 13, 46.
Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M. & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: a worked example. Journal of Health Services Research & Policy 7 (4) 209-215.
Atkins, S., Lewin, S., Smith, H., Engel, M., Fretheim, A. & Volmink, J. (2008). Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Medical Research Methodology 8, 21.
Hannes, K., Lockwood, C. & Pearson, A. (2010). A comparative analysis of three online appraisal instruments’ ability to assess validity in qualitative research. Qualitative Health Research 20 (12) 1736-1743.
Benham-Hutchins, M., Staggers, N., Mackert, M. & Johnson, A.H. (2017). “I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Sservices Research 17, 529.
Lian, O.S. & Robson, C. (2017). “It´ s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters. International Journal of Qualitative Studies on Health and Well-being 12 (1) 1392219.
Morris, A., Herrmann, T., Liles, C. & Roskell, C. (2018). A qualitative examination of patients experiences of dietitians' consultation engagement styles within nephrology. Journal of Human Nutrition and Dietetics 31 (1) 12-22.
Ho, J.W., Kuluski, K. & Im, J. (2017). “It's a fight to get anything you need” - Accessing care in the community from the perspectives of people with multimorbidity. Health Expectations 20 (6) 1311-1319.
Cott, C. (2004). Client-centred rehabilitation: client perspectives. Disability and Rehabilitation 26 (24) 1411-1422.
Wright, M.M., Medved, M., Woodgate, R.L., Roger, K. & Sullivan, D. (2016). Narratives of acquired brain injury patients: Their experience of healthcare relationships and medical decision-making. Journal of Communication in Healthcare 9 (3) 190-199.
Bayliss, E.A., Edwards, A.E., Steiner, J.F. & Main, D.S. (2008). Processes of care desired by elderly patients with multimorbidities. Family Practice 25 (4) 287-293.
Clarke, A., Martin, D., Jones, D., Schofield, P., Anthony, G., McNamee, P., Gray, D. & Smith, B.H. (2014). “I try and smile, I try and be cheery, I try not to be pushy. I try to say ‘I'm here for help’ but I leave feeling… worried”: A qualitative study of perceptions of interactions with health professionals by community-based older adults with chronic pain. PLoS One 9 (9) e105450.
Chan, E.A., Wong, F., Cheung, M.Y. & Lam, W. (2018). Patients' perceptions of their experiences with nurse-patient communication in oncology settings: A focused ethnographic study. PloS One 13 (6) e0199183.
Cooper, K., Smith, B.H. & Hancock, E. (2008). Patient-centredness in physiotherapy from the perspective of the chronic low back pain patient. Physiotherapy 94 (3) 244-252.
Protheroe, J., Brooks, H., Chew-Graham, C., Gardner, C. & Rogers, A. (2013). ‘Permission to participate?’ A qualitative study of participation in patients from differing socio-economic backgrounds. Journal of Health Psychology 18 (8) 1046-1055.
Teh, C.F., Karp, J.F., Kleinman, A., Reynolds III, C.F., Weiner, D.K. & Cleary, P.D. (2009). Older people's experiences of patient-centered treatment for chronic pain: a qualitative study. Pain Medicine 10 (3) 521-530.
Jowsey, T., Gillespie, J. & Aspin, C. (2011). Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes. Chronic Illness 7 (1) 6-19.
Duthie, K., Strohschein, F. & Loiselle, C.G. (2017). Living with cancer and other chronic conditions: Patients’ perceptions of their healthcare experience. Canadian Oncology Nursing Journal/Revue Canadienne de Soins Infirmiers en Oncologie 27 (1) 43-48.
Raven, M.C., Gillespie, C.C., DiBennardo, R., Van Busum, K. & Elbel, B. (2012). Vulnerable patients’ perceptions of health care quality and quality data. Medical Decision Making 32 (2) 311-326.
Nakrem, S., Vinsnes, A.G. & Seim, A. (2011). Residents’ experiences of interpersonal factors in nursing home care: a qualitative study. International Journal of Nursing Studies 48 (11) 1357-1366.
Toles, M.P., Abbott, K.M., Hirschman, K.B. & Naylor, M.D. (2012). Transitions in care among older adults receiving long-term services and supports. Journal of Gerontological Nursing 38 (11) 40-47.
Östman, M., Ung, E.J. & Falk, K. (2015). Health-care encounters create both discontinuity and continuity in daily life when living with chronic heart failure - A grounded theory study. International Journal of Qualitative Studies on Health and Well-being 10 (1) 27775.
Sheridan, N.F., Kenealy, T.W., Kidd, J.D., Schmidt‐Busby, J.I., Hand, J.E., Raphael, D.L., McKillop, A.M. & Rea, H.H. (2015). Patients’ engagement in primary care: powerlessness and compounding jeopardy. A qualitative study. Health Expectations 18 (1) 32-43.
Egeli, N.A., Crooks, V.A., Matheson, D., Ursa, M. & Marchant, E. (2008). Patients’ views: improving care for people with fibromyalgia. Journal of Clinical Nursing 17 (11c) 362-369.
Bergman, A.A., Matthias, M.S., Coffing, J.M. & Krebs, E.E. (2013). Contrasting tensions between patients and PCPs in chronic pain management: a qualitative study. Pain Medicine 14 (11) 1689-1697.
Zizzo, N., Bell, E., Lafontaine, A.L. & Racine, E. (2017). Examining chronic care patient preferences for involvement in health‐care decision making: the case of Parkinson's disease patients in a patient-centred clinic. Health Expectations 20 (4) 655-664.
Naithani, S., Gulliford, M. & Morgan, M. (2006). Patients’ perceptions and experiences of ‘continuity of care’ in diabetes. Health Expectations 9 (2) 118-129.
Cocksedge, S., Greenfield, R., Nugent, G.K. & Chew-Graham, C. (2011). Holding relationships in primary care: a qualitative exploration of doctors' and patients' perceptions. British Journal of General Practice 61 (589) e484-e491.
Nygren Zotterman, A., Skär, L., Olsson, M. & Söderberg, S. (2016). Being in togetherness: meanings of encounters within primary healthcare setting for patients living with long‐term illness. Journal of Clinical Nursing 25 (19-20) 2854-2862.
Dams-O’Connor, K., Landau, A., Hoffman, J. & St De Lore, J. (2018). Patient perspectives on quality and access to healthcare after brain injury. Brain Injury 32 (4) 431-441.
Harding, G., Parsons, S., Rahman, A. & Underwood, M. (2005). “It struck me that they didn't understand pain”: the specialist pain clinic experience of patients with chronic musculoskeletal pain. Arthritis Care & Research 53 (5) 691-696.
Johansson, E.E., Hamberg, K., Lindgren, G. & Westman, G. (1996). “I've been crying my way” - qualitative analysis of a group of female patients' consultation experiences. Family Practice 13 (6) 498-503.
Hartley, S.E., Goodwin, P.C. & Goldbart, J. (2011). Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders. Disability and Rehabilitation 33 (12) 1022-1032.
Murphy, K., Chuma, T., Mathews, C., Steyn, K. & Levitt, N. (2015). A qualitative study of the experiences of care and motivation for effective self-management among diabetic and hypertensive patients attending public sector primary health care services in South Africa. BMC Health Services Research 15, 303.
Hudon, C., Tribble, D.S.C., Bravo, G., Hogg, W., Lambert, M. & Poitras, M.E. (2013). Family physician enabling attitudes: a qualitative study of patient perceptions. BMC Family Practice 14, 8.
Donnelly, L. & MacEntee, M.I. (2016). Care perceptions among residents of LTC facilities purporting to offer person-centred care. Canadian Journal on Aging/La Revue Canadienne du Vieillissement 35 (2) 149-160.
Upshur, C.C., Bacigalupe, G. & Luckmann, R. (2010). “They don't want anything to do with you”: Patient views of primary care management of chronic pain. Pain Medicine 11 (12) 1791-1798.
Cabassa, L.J., Gomes, A.P., Meyreles, Q., Capitelli, L., Younge, R., Dragatsi, D., Alvarez, J., Nicasio, A., Druss, B. & Lewis-Fernández, R. (2014). Primary health care experiences of Hispanics with serious mental illness: a mixed-methods study. Administration and Policy in Mental Health and Mental Health Services Research 41 (6) 724-736.
Winsor, S., Smith, A., Vanstone, M., Giacomini, M., Brundisini, F.K. & DeJean, D. (2013). Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis. Ontario Health Technology Assessment Series 13 (17) 1-33.
Harrison, J. & Frampton, S. (2017). Resident‐Centered Care in 10 US Nursing Homes: Residents’ Perspectives. Journal of Nursing Scholarship 49 (1) 6-14.
Abdulhadi, N., Al Shafaee, M., Freudenthal, S., Östenson, C.G. & Wahlström, R. (2007). Patient-provider interaction from the perspectives of type 2 diabetes patients in Muscat, Oman: a qualitative study. BMC Health Services Research 7, 162.
Morton, R.L., Rychetnik, L., McCaffery, K., Thompson, J.F. & Irwig, L. (2013). Patients' perspectives of long-term follow-up for localised cutaneous melanoma. European Journal of Surgical Oncology 39 (3) 297-303.
Saver, B.G., Van-Nguyen, V., Keppel, G. & Doescher, M.P. (2007). A qualitative study of depression in primary care: missed opportunities for diagnosis and education. Journal of the American Board of Family Medicine 20 (1) 28-35.
Kuluski, K., Hoang, S.N., Schaink, A.K., Alvaro, C., Lyons, R.F., Tobias, R. & Bensimon, C. M. (2013). The care delivery experience of hospitalized patients with complex chronic disease. Health Expectations 16 (4) e111-e123.
Brown, E.J., Kangovi, S., Sha, C., Johnson, S., Chanton, C., Carter, T. & Grande, D.T. (2015). Exploring the patient and staff experience with the process of primary care. Annals of Family Medicine 13 (4) 347-353.
Baudendistel, I., Noest, S., Peters-Klimm, F., Herzberg, H., Scherer, M., Blozik, E. & Joos, S. (2015). Bridging the gap between patient needs and quality indicators: a qualitative study with chronic heart failure patients. Patient Preference and Adherence 9, 1397-1405.
Sav, A., Kendall, E., McMillan, S.S., Kelly, F., Whitty, J.A., King, M.A. & Wheeler, A.J. (2013). ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health & Social Care in the Community 21 (6) 665-674.
Fu, Y., McNichol, E., Marczewski, K. & José Closs, S. (2018). The management of chronic back pain in primary care settings: Exploring perceived facilitators and barriers to the development of patient–professional partnerships. Qualitative Health Research 28 (9) 1462-1473.
Laitila, M., Nummelin, J., Kortteisto, T. & Pitkänen, A. (2018). Service users' views regarding user involvement in mental health services: A qualitative study. Archives of Psychiatric Nursing 32 (5) 695-701.
Hancock, R.E., Bonner, G., Hollingdale, R. & Madden, A.M. (2012). ‘If you listen to me properly, I feel good’: a qualitative examination of patient experiences of dietetic consultations. Journal of Human Nutrition and Dietetics 25 (3) 275-284.
Ackoff, R.L. (1989). From data to wisdom. Journal of Applied Systems Analysis 16 (1) 3-9.
Bernstein, J.H. (2009). The Data-Information-Knowledge-Wisdom Hierarchy and its Antithesis. Journal of Information Science 2, 68-75.
Staples, D.S. & Webster, J. (2008). Exploring the effects of trust, task interdependence and virtualness on knowledge sharing in teams. Information Systems Journal 18 (6) 617-640.
Kucharska, W. & Kowalczyk, R. (2016). Trust, collaborative culture and tacit knowledge sharing in project management - A relationship model. Proceedings of the 13th International Conference on Intellectual Capital, Knowledge Management & Organisational Learning, Ithaca, NY.
Svanström, R., Sundler, A.J., Berglund, M. & Westin, L. (2013). Suffering caused by care - elderly patients’ experiences in community care. International Journal of Qualitative Studies on Health and Well-being 8 (1) 20603.
Shippee, N.D., Shah, N.D., May, C.R., Mair, F.S. & Montori, V.M. (2012). Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. Journal of Clinical Epidemiology 65 (10) 1041-1051.
Penchansky, R. & Thomas, J.W. (1981). The concept of access: definition and relationship to consumer satisfaction. Medical Care 19 (2) 127-140.
Aday, L.A., Andersen, R. & Fleming, G.V. (1980). Health care in the US: Equitable for whom? Beverly Hills, CA: Sage.
Bureau of Health Planning. (1979). Operational measures for health systems characteristics (U.S. Department HRA Publication No. 79-14032). Washington, DC: U.S. Government Printing Office.
May, C.R., Mair, F., Finch, T., MacFarlane, A., Dowrick, C., Treweek, S., Rapley, T., Ballini, L., Ong, B.N., Rogers, A. et al. (2009). Development of a theory of implementation and integration: Normalization Process Theory. Implementation Science 4 (1) 29.
Kitson, A., Marshall, A., Bassett, K. & Zeitz, K. (2013). What are the core elements of patient‐centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing 69 (1) 4-15.
Scholl, I., Zill, J.M., Härter, M. & Dirmaier, J. (2014). An integrative model of patient-centeredness–a systematic review and concept analysis. PloS One 9 (9) e107828.
Dowrick, C. (2018). Person-centred Primary Care: Searching for the Self. London and New York: Routledge.
Campbell, R., Pound, P., Morgan, M., Daker-White, G., Britten, N., Pill, R., Yardley, L., Pope, C. & Donovan, J. (2011). Evaluating meta ethnography: systematic analysis and synthesis of qualitative research. Health Technology Assessment 15 (43) 1-164.
Toye, F., Seers, K., Allcock, N., Briggs, M., Carr, E., & Barker, K. (2014). Meta-ethnography 25 years on: challenges and insights for synthesising a large number of qualitative studies. BMC Medical Research Methodology 14, 80.
France, E.F., Uny, I., Ring, N., Turley, R.L., Maxwell, M., Duncan, E.A.S., Jepson, R.G., Roberts, R.J. & Noyes, J. (2019). A methodological systematic review of meta-ethnography conduct to articulate the complex analytical phases. BMC Medical Research Methodology 19, 35.
Boehmer, K.R., Gionfriddo, M.R., Rodriguez-Gutierrez, R., Dabrh, A.M.A., Leppin, A. L., Hargraves, I., May, C.R., Shippee, N.D., Castaneda-Guarderas, A., Zeballos Palacios, C. et al. (2016). Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis. BMC Family Practice 17, 127.
Kotter, J. (1996) Leading Change. Boston, MA: Harvard Business School Press.
McNamara, S. (2012). Does it take too long to become a doctor. Medical Journal of Australia 196 (8) 528-530.
DOI: http://dx.doi.org/10.5750/ejpch.v7i4.1779
Refbacks
- There are currently no refbacks.