Managing expectations: Cognitive authority and experienced control in complex healthcare processes

BMC Health Services Research

Volumn 17, Issue 1, 2017, Pages

  Hunt, Katherine J ^a,b   May, Carl R ^a,b,c  

^a UNIVERSITY OF SOUTHAMPTON   (United Kingdom)

^b Wessex NIHR CLAHRC   (United Kingdom)

^c UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

COGNITION; HEALTH CARE DELIVERY; HUMAN; INTERPERSONAL COMMUNICATION; PATIENT COMPLIANCE; PSYCHOLOGICAL MODEL; QUALITATIVE RESEARCH; SELF CARE;

COGNITION; DELIVERY OF HEALTH CARE; HUMANS; MODELS, PSYCHOLOGICAL; NEGOTIATING; PATIENT COMPLIANCE; QUALITATIVE RESEARCH; SELF CARE;

EID: 85021709403     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/s12913-017-2366-1     Document Type: Article

References (104)

1. Gallacher KI, Batty GD, McLean G, Mercer SW, Guthrie B, May CR, et al. Stroke, multimorbidity and polypharmacy in a nationally representative sample of 1,424,378 patients in Scotland: implications for treatment burden. BMC Med. 2014;12(1):151.
2. May C, Eton DT, Boehmer KR, Gallacher K, Hunt K, MacDonald S, et al. Rethinking the patient: using burden of treatment theory to understand the changing dynamics of illness. BMC Health Serv Res. 2014;14(1):281.
3. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339(aug11-2):b2803.
4. Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65(10):1041-51.
5. Boger E, Ellis J, Latter S, Foster C, Kennedy A, Jones F, et al. Self-management and self-management support outcomes: a systematic review and mixed research synthesis of stakeholder views. PLoS One. 2015;10(7):e0130990.
6. Demain S, Gonçalves A-C, Areia C, Oliveira R, Marcos AJ, Marques A, et al. Living with, managing and Minimising treatment burden in long term conditions: a systematic review of qualitative research. PLoS One. 2015;10(5):e0125457.
7. Gallacher K, Morrison D, Jani B, Macdonald S, May CR, Montori VM, et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013;10(6):e1001473.
8. Sav A, King MA, Whitty JA, Kendall E, McMillan SS, Kelly F, Hunter B, Wheeler AJ. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect. 2015;18(3):312-24.
9. Boehmer KR, Gionfriddo MR, Rodriguez-Gutierrez R, Dabrh AMA, Leppin AL, Hargraves I, et al. Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis. BMC Fam Pract. 2016;17(1):1-23.
10. May CR, Cummings A, Myall M, Harvey J, Pope C, Griffith P, et al. Experiences of long-term lifelimiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease? BMJ Open. 2016;6:e011694.
11. Bandura A. Self-efficacy mechanism in human agency. Am Psychol. 1982;37(2):122-47.
12. Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191-215.
13. Lev EL, Daley KM, Conner NE, Reith M, Fernandez C, Owen SV. An intervention to increase quality of life and self-care self-efficacy and decrease symptoms in breast cancer patients. Res Theory Nurs Pract. 2001;15(3):277-94.
14. Cramm JM, Strating MM, Roebroeck ME, Nieboer AP. The importance of general self-efficacy for the quality of life of adolescents with chronic conditions. Soc Indic Res. 2013;113(1):551-61.
15. Gong G, Mao J. Health-related quality of life among Chinese patients with rheumatoid arthritis: the predictive roles of fatigue, functional disability, self-efficacy, and social support. Nurs Res. 2016;65(1):55-67.
16. Simpson E, Jones M. An exploration of self-efficacy and self-management in COPD patients. Brit J Nurs. 2013;22(19):1105-9.
17. Dickson VV, Buck H, Riegel B. Multiple comorbid conditions challenge heart failure self-care by decreasing self-efficacy. Nurs Res. 2013;62(1):2-9.
18. Brady TJ, Murphy L, O'Colmain BJ, Beauchesne D, Daniels B, Greenberg M. A meta-analysis of health status, health behaviors, and health care utilization outcomes of the chronic disease self-management program. Preventing Chronic Dis. 2013;10:E07.
19. Newbould J, Taylor D, Bury M. Lay-led self-management in chronic illness: a review of the evidence. Chronic Illn. 2006;2(4):249-61.
20. Fox NJ, Ward KJ, O'Rourke AJ. The 'expert patient': empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the internet. Soc Sci Med. 2005;60(6):1299-309.
21. Strauss A, Schatzman L, Bucher R, Ehrlichman D, Sabshin M. Psychiatric ideologies and institutions. New York: Free Press; 1964.
22. Strauss AL. Negotiations: Varieties, contexts, processes, and social order. San Fransisco: Jossey-Bass Inc Pub; 1978.
23. Pickard S, Rogers A. Knowing as practice: self-care in the case of chronic multi-morbidities. Social Theory & Health. 2012;10(2):101-20.
24. Boehmer KR, Shippee ND, Beebe TJ, Montori VM. Pursuing minimally disruptive medicine: correlation of patient capacity with disruption from illness and healthcare-related demands. J Clin Epidemiol. 2016;74:227-36.
25. Tran V-T, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the treatment burden questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12(1):109.
26. Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012;10(1):68.
27. Eton DT, de Oliveira DR, Egginton JS, Ridgeway JL, Odell L, May CR, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Rel Outcome Meas. 2012;3:39.
28. Eton DT, Yost KJ, Lai J-s, Ridgeway JL, Egginton JS, Rosedahl JK, et al. Development and validation of the patient experience with treatment and self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res. 2017;26:489.
29. Sav A, Whitty JA, McMillan SS, Kendall E, Kelly F, King MA, Wheeler AJ. Treatment Burden and Chronic Illness: Who is at Most Risk? Patient. 2016;9:559.
30. May CR, Johnson M, Finch T. Implementation, context and complexity. Implement Sci. 2016;11(1):141.
31. Merton RK. Social theory and social structure. New York: Free Press; 1957.
32. Boudon R. What middle-range theories are. Contemp Sociol. 1991;20(4):519-22.
33. Swedberg R. Theorizing in sociology and social science: turning to the context of discovery. Theor Soc. 2012;41(1):1-40.
34. May C. A rational model for assessing and evaluating complex interventions in health care. BMC Health Serv Res. 2006;6(86):1-11.
35. May CR, Mair F, Finch T, MacFarlane A, Dowrick C, Treweek S, et al. Development of a theory of implementation and integration: normalization process theory. Implement Sci. 2009;4:29.
36. Hunt K, James EP, Anton-Solanas I, Masters J, Richardson A, May CR. Bystander behaviour and control: hpw healthcare organisation and hierarchies challenge the work of patienthood in the management of illness complexity. Unpublished Working Paper, Faculty of Health Sciences, University of Southampton 2015.
37. May C: Retheorizing the clinical encounter. In: Assaults on the Lifeworld: new directions in the sociology of chronic and disabling conditions. Edited by Scambler G, Scambler S. London Routledge; 2010.
38. Eton DT, Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm DH, et al. Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Relat Outcome Meas. 2015;6:117-26.
39. Gallacher K, May CR, Montori VM, Mair FS. Understanding patients' experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9(3):235-43.
40. Molloy GJ, Johnston DW, Witham MD. Family caregiving and congestive heart failure. Review and analysis. Eur J Heart Fail. 2005;7(4):592-603.
41. Yu DS, Lee DT, Kwong AN, Thompson DR, Woo J. Living with chronic heart failure: a review of qualitative studies of older people. J Adv Nurs. 2008;61(5):474-83.
42. Hopp FP, Thornton N, Martin L. The lived experience of heart failure at the end of life: a systematic literature review. Health Soc Work. 2010;35(2):109-17.
43. 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.
44. Dev S, Abernethy AP, Rogers JG, O'Connor CM. Preferences of people with advanced heart failure-a structured narrative literature review to inform decision making in the palliative care setting. Am Heart J. 2012;164(3):313-319.e315.
45. Dickson VV, Buck H, Riegel B. A qualitative meta-analysis of heart failure self-care practices among individuals with multiple comorbid conditions. J Card Fail. 2011;17(5):413-9.
46. Kang X, Li Z, Nolan MT. Informal caregivers' experiences of caring for patients with chronic heart failure: systematic review and metasynthesis of qualitative studies. J Cardiovasc Nurs. 2011;26(5):386-94.
47. Low J, Pattenden J, Candy B, Beattie JM, Jones L. Palliative care in advanced heart failure: an international review of the perspectives of recipients and health professionals on care provision. J Card Fail. 2011;17(3):231-52.
48. Tierney S, Mamas M, Skelton D, Woods S, Rutter MK, Gibson M, et al. What can we learn from patients with heart failure about exercise adherence? A systematic review of qualitative papers. Health Psychol. 2011;30(4):401-10.
49. Thomas JR, Clark AM. Women with heart failure are at high psychosocial risk: A systematic review of how sex and gender influence heart failure self-care. Cardiol Res Pract. 2011; 1(1).
50. Clark AM, Savard LA, Spaling MA, Heath S, Duncan AS, Spiers JA. Understanding help-seeking decisions in people with heart failure: a qualitative systematic review. Int J Nurs Stud. 2012;49(12):1582-97.
51. Jani B, Blane D, Browne S, Montori V, May C, Shippee N, et al. Identifying treatment burden as an important concept for end of life care in those with advanced heart failure. Curr Opinion Support Palliat Care. 2013;7(1):3-7.
52. Procter E. Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia? Int J Palliat Nurs. 2012;18(7):339-47.
53. Buck HG, Harkness K, Wion R, Carroll SL, Cosman T, Kaasalainen S, et al. Caregivers' contributions to heart failure self-care: a systematic review. Eur J Cardiovasc Nurs. 2015;14(1):79-89.
54. Falk H, Ekman I, Anderson R, Fu M, Granger B. Older patients' experiences of heart failure-an integrative literature review. J Nurs Schol. 2013;45(3):247-55.
55. Siabani S, Leeder SR, Davidson PM. Barriers and facilitators to self-care in chronic heart failure: a meta-synthesis of qualitative studies. Spring. 2013;2:320.
56. Sookhoo D, Pellowe C, Derham C. The experiences of heart failure patients following their participation in self-management patient education programmes: a systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2013;11(2):236-80.
57. Clark AM, Spaling M, Harkness K, Spiers J, Strachan PH, Thompson DR, Currie K. Determinants of effective heart failure self-care: a systematic review of patients' and caregivers' perceptions. Heart. 2014;100:716-21.
58. Dekker RL. Patient perspectives about depressive symptoms in heart failure: a review of the qualitative literature. J Cardiovasc Nurs. 2014;29(1):E9-15.
59. Strachan PH, Currie K, Harkness K, Spaling M, Clark AM. Context matters in heart failure self-care: a qualitative systematic review. J Card Fail. 2014;20(6):448-55.
60. Wingham J, Harding G, Britten N, Dalal H. Heart failure patients' attitudes, beliefs, expectations and experiences of self-management strategies: a qualitative synthesis. Chronic Illn. 2014;10(2):135-54.
61. May CR, Masters J, Welch L, Hunt K, Pope C, Myall M, et al. EXPERTS 1 - experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study. BMJ Open. 2015;5(4):e007372.
62. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-88.
63. Fligstein N. Social skill and the theory of fields. Sociol Theor. 2001;19(2):105-25.
64. Glaser BG, Strauss A. Status passage. London: Routledge & Kegan Paul Ltd; 1971.
65. Tong A, Cheung KL, Nair SS, Kurella Tamura M, Craig JC, Winkelmayer WC. Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. Am J Kidney Dis. 2014;63(6):913-27.
66. Wadd K, King L, Bennett P, Grant J. Being a parent on dialysis: a literature review. J. 2011;37(4):208-15.
67. Welstand J, Carson A, Rutherford P. Living with heart failure: an integrative review. Int J Nurs Stud. 2009;46(10):1374-85.
68. Jeon YH, Kraus SG, Jowsey T, Glasgow NJ. The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Serv Res. 2010;10:77.
69. Rolls TP, Young LE. Disrupting the biomedical discourse: older Women's lived experiences with heart failure: a feminist review of the literature. Canadian Journal of Cardiovascular Nursing. 2012;22(1):18-25.
70. Thorpe O, Johnston K, Kumar S. Barriers and enablers to physical activity participation in patients with COPD: a systematic review. J Cardiopulm Rehabil Prevent. 2012;32(6):359-69.
71. Makaroff KL. Experiences of kidney failure: a qualitative meta-synthesis. Nephrol Nurs J. 2012;39(1):21-9. 80; quiz 30
72. Moustakas J, Bennett PN, Nicholson J, Tranter S. The needs of older people with advanced chronic kidney disease choosing supportive care: a review. Renal Society of Australasia Journal. 2012;8(2):70-5.
73. Disler RT, Green A, Luckett T, Newton PJ, Inglis S, Currow DC, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manag. 2014;48(6):1182-99.
74. Harwood L, Clark AM. Understanding pre-dialysis modality decision-making: a meta-synthesis of qualitative studies. Int J Nurs Stud. 2013;50(1):109-20.
75. 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.
76. Sullivan M. The new subjective medicine: taking the patient's point of view on health care and health. Soc Sci Med. 2003;56(7):1595-604.
77. Palmer SC, Hanson CS, Craig JC, Strippoli GF, Ruospo M, Campbell K, et al. Dietary and fluid restrictions in CKD: a thematic synthesis of patient views from qualitative studies. Am J Kidney Dis. 2015;65(4):559-73.
78. Kirkpatrick P, Wilson E, Wimpenny P. Support for older people with COPD in community settings: a systematic review of qualitative research. JBI Database of Systematic Reviews and Implementation Reports. 2012;10(57):3649-763.
79. McEntee ML, Cuomo LR, Dennison CR. Patient-, provider-, and system-level barriers to heart failure care. J Cardiovasc Nurs. 2009;24(4):290-8.
80. Walker RC, Hanson CS, Palmer SC, Howard K, Morton RL, Marshall MR, et al. Patient and caregiver perspectives on home hemodialysis: a systematic review. Am J Kidney Dis. 2015;65(3):451-63.
81. Morgan HM, Entwistle VA, Cribb A, Christmas S, Owens J, Skea ZC, et al. We need to talk about purpose: a critical interpretive synthesis of health and social care professionals' approaches to self-management support for people with long-term conditions. Health Expect. 2017;20(2):243-259. doi: 10.1111/hex.12453.
82. Huber M, van Vliet M, Giezenberg M, Winkens B, Heerkens Y, Dagnelie PC, et al. Towards a 'patient-centred' operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open. 2016;6(1):e010091.
83. Langer S, Chew-Graham C, Hunter C, Guthrie EA, Salmon P. Why do patients with long-term conditions use unscheduled care? A qualitative literature review. HealthSoc Care Comm. 2013;21(4):339-51.
84. Disler RT, Gallagher RD, Davidson PM. Factors influencing self-management in chronic obstructive pulmonary disease: an integrative review. Int J Nurs Stud. 2012;49(2):230-42.
85. Cullen DL, Stiffler D. Long-term oxygen therapy: review from the patientsg perspective. Chronic Resp Dis. 2009;6(3):141-7.
86. Oishi A, Murtagh FE. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals. Palliat Med. 2014;28(9):1081-98.
87. de Sousa Pinto JM, Martin-Nogueras AM, Morano MT, Macedo TE, Arenillas JI, Troosters T. Chronic obstructive pulmonary disease patients' experience with pulmonary rehabilitation: a systematic review of qualitative research. Chronic Resp Dis. 2013;10(3):141-57.
88. Gysels M, Bausewein C, Higginson IJ. Experiences of breathlessness: a systematic review of the qualitative literature. Palliat Support Care. 2007;5(3):281-302.
89. Giacomini M, DeJean D, Simeonov D, Smith A. Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser. 2012;12(13):1-47.
90. Kessing D, Denollet J, Widdershoven J, Kupper N. Psychological determinants of heart failure self-care: systematic review and meta-analysis. Psychosom Med. 2016;78(4):412-31.
91. Therborn G. Back to norms! On the scope and dynamics of norms and normative action. Curr Sociol. 2003;50(6):863-80.
92. Turner JH. A theory of social interaction. Cambridge: Polity Press; 1988.
93. Kemp R. Medical dominance and institutional change in the delivery of health care services. For Social Econ. 2007;36:43-51.
94. Freidson E. The profession of medicine. Chicago: Chicago University Press; 1970.
95. Armstrong D. A new history of identity: a sociology of medical knowledge. Basingstoke: Palgrave; 2002.
96. Glaser BG, Strauss AL. Awareness of dying. New York: Transaction; 2005.
97. Momen N, Hadfield P, Kuhn I, Smith E, Barclay S. Discussing an uncertain future: end-of-life care conversations in chronic obstructive pulmonary disease. A systematic literature review and narrative synthesis. Thorax. 2012;67(9):777-80.
98. Boyd K, Mason B, Kendall M, Barclay S, Chinn D, Thomas K, et al. Advance care planning for cancer patients in primary care: a feasibility study. Brit J Gen Pract. 2010;60(581):e449-58.
99. Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed patients a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care. 2012;35(1):47-9.
100. Street RL, Krupat E, Bell RA, Kravitz RL, Haidet P. Beliefs about control in the physician-patient relationship. J Gen Int Med. 2003;18(8):609-16.
101. Auerbach SM, Clore JN, Kiesler DJ, Orr T, Pegg PO, Quick BG, et al. Relation of diabetic patients' health-related control appraisals and physician-patient interpersonal impacts to patients' metabolic control and satisfaction with treatment. J Behav Med. 2002;25(1):17-31.
102. Montori VM, Gafni A, Charles C. A shared treatment decision-making approach between patients with chronic conditions and their clinicians: the case of diabetes. Health Expect. 2006;9(1):25-36.
103. Lloyd A, Joseph-Williams N, Edwards A, Rix A, Elwyn G. Patchy 'coherence': using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC). Implement Sci. 2013;8:102.
104. Elwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: A model for patient care. Patient Educ Couns. 2014;97(2):158-64.