Patient empowerment in long-term conditions: development and preliminary testing of a new measure

Nicola Small, Peter Bower, Carolyn A Chew-Graham, Diane Whalley, Joanne Protheroe, Nicola Small, Peter Bower, Carolyn A Chew-Graham, Diane Whalley, Joanne Protheroe

Abstract

Background: Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.

Methods: We conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.

Results: Sixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.

Conclusion: Initial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.

Figures

Figure 1
Figure 1
A conceptual model of the process and outcome of empowerment as described by patients’ with long-term conditions in primary care.

References

    1. Department of Health. Self care: a national view in 2007 compared to 2004–2005. London: Stationery Office; 2007.
    1. Hibbard J, Collins P, Mahoney E, Baker L. The development and testing of a measure assessing clinician beliefs about patient self-management. Health Expect. 2009;13:65–72.
    1. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: a structured review of intervention strategies. Pat Educ Couns. 2006;63:12–23. doi: 10.1016/j.pec.2005.10.005.
    1. Donaldson L. Expert patients usher in a new era of opportunity for the NHS. BMJ. 2003;326:1279–1280. doi: 10.1136/bmj.326.7402.1279.
    1. Zimmerman MA, Rappaport J. Citizen participation, perceived control and psychological empowerment. American J Comm Psychol. 1988;16:725–750. doi: 10.1007/BF00930023.
    1. Zimmerman MA. Psychological empowerment: issues and illustrations. J Comm Psychol. 1995;23:581–599. doi: 10.1007/BF02506983.
    1. Roberts KJ. Patient empowerment in the United States: a critical commentary. Health Expect. 1999;2:82–92. doi: 10.1046/j.1369-6513.1999.00048.x.
    1. Conger J, Kanungo R. The empowerment process: integrating theory and practice. Acad Man Rev. 1988;13:471–482.
    1. Zimmerman MA. Toward a theory of learned hopelessness: a structural model of analysis of participation and empowerment. J Res Pers. 1990;24:71–86. doi: 10.1016/0092-6566(90)90007-S.
    1. Gibson CH. A concept analysis of empowerment. J Adv Nurs. 1991;16:354–361. doi: 10.1111/j.1365-2648.1991.tb01660.x.
    1. Gibson CH. The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995;21:1201–1210. doi: 10.1046/j.1365-2648.1995.21061201.x.
    1. Segal SP, Silverman C, Temkin T. Measuring empowerment in client-run self-help agencies. Comm Mental Health J. 1995;31:215–227. doi: 10.1007/BF02188748.
    1. Aujoulat I, Luminet O, Deccache A. The perspective of patients on their experience of powerlessness. Qual Health Res. 2007;17:772–785. doi: 10.1177/1049732307302665.
    1. Feste CC. A practical look at patient empowerment. Diab Care. 1992;15:922–925.
    1. Samuel-Hodge C, DeVellis R, Ammerman A, Keyserling T. Reliability and validity of a measure of perceived diabetes and dietary competence in African American women with type 2 diabetes. Diab Educat. 2002;26:979–988.
    1. Funnell MM, Anderson RM. Patient empowerment: a look back, a look ahead. Diab Educat. 2003;29:454–464. doi: 10.1177/014572170302900310.
    1. Funnell MM, Anderson RM. Empowerment and self-management of diabetes. Clinic Diab. 2004;22:123–127. doi: 10.2337/diaclin.22.3.123.
    1. Anderson RM, Funnell MM, Barr PA, Dedrick RF, Davis WK. Learning to empower patients: results of professional education program for diabetes educators. Diab Care. 1991;14:584–590. doi: 10.2337/diacare.14.7.584.
    1. Leksell J, Funnell M, Sandberg G, Smide B, Wiklund G, Wikblad K. Psychometric properties of the Swedish Diabetes Empowerment Scale. Scand J Caring Sci. 2007;21:247–252. doi: 10.1111/j.1471-6712.2007.00463.x.
    1. Rogers ES, Chamberlin J, Ellison ML, Crean T. A consumer-constructed scale to measure empowerment among users of mental health services. Psychiat Serv. 1997;48:1042–1047.
    1. Sigurdardottir A, Jonsdottir H. Empowerment in diabetes care: towards measuring empowerment. Scand J Caring Sci. 2008;22:284–291. doi: 10.1111/j.1471-6712.2007.00506.x.
    1. Anderson RM, Funnell MM, Fitzgerald JT, Marrero DG. The Diabetes Empowerment Scale: a measure of psychosocial self-efficacy. Diab Care. 2000;23:739–743. doi: 10.2337/diacare.23.6.739.
    1. Suen SM. A model of empowerment for Hong Kong Chinese cancer patients and the role of self-help groups in the empowering process. (Hong Kong Polytechnic (People’s Republic of China)) PhD. 1998;331
    1. Atak N, Kose K, Gurkan T. The impact of patient education on Diabetes Empowerment Scale (DES) and Diabetes Attitude Scale (DAS-3) in patients with type 2 diabetes. Turk J Med Sci. 2008;38:49–57.
    1. Shiu ATY, Li S, Thompson DR. The concurrent validity of the Chinese version of the Diabetes Empowerment Scale. Diab Care. 2005;28:498–499.
    1. Anderson RM, Funnell MM, Nwankwo R, Gillard ML, Oh M, Fitzgerald JT. Evaluating a problem-based empowerment program for African Americans with diabetes: results of a randomized controlled trial. Ethn Dis. 2005;15:671–678.
    1. Department of Health. Equity and excellence: liberating the NHS. London: Stationery Office; 2010.
    1. Bulsara C, Styles I, Ward AM, Bulsara M. The psychometrics of developing the Patient Empowerment Scale. J Psychosoc Oncol. 2006;24:1–16.
    1. Klima C, Vonderheid S, Norr K. Measuring empowerment in pregnancy: the Pregnancy-Related Empowerment Scale… Conference proceedings: abstracts from Research Forums presented at the ACNM 52nd Annual Meeting 2007. J Mid Women’s Health. 2007;34:531.
    1. Faulkner M. A measure of patient empowerment in hospital environments catering for older people. J Adv Nurs. 2001;34:676–86. doi: 10.1046/j.1365-2648.2001.01797.x.
    1. Mikky IF. Development of the Client Empowerment Scale (CES) (University of Connecticut) PhD. 2006;165
    1. Vigil BA. Development and validation of a measure of empowerment for individuals suffering from eating problems. Diss Abstracts Internat. 2006;66:4531.
    1. Howie J, Heaney D, Maxwell M. Measuring quality in general practice. Occasional Paper Series. 1997;75
    1. Beaglehole R, Epping-Jordan J, Patel V, Chopra M, Ebrahim S, Kidd M. et al.Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care. Lancet. 2008;372:940–949. doi: 10.1016/S0140-6736(08)61404-X.
    1. Blakeman T, Chew-Graham C, Reeves D, Rogers A, Bower P. The Quality and Outcomes Framework and self-management dialogue in primary care consultations: a qualitative study. BJGP. 2011;61:666–673. doi: 10.3399/bjgp11X601389.
    1. Wahlin I, Ek AC, Idvall E. Patient empowerment in intensive care: an interview study. Intens Crit Care Nurs. 2006;22:370–377. doi: 10.1016/j.iccn.2006.05.003.
    1. Glaser B. Theoretical Sensitivity. Mill Valley: Sociology Press; 1978.
    1. Miles M, Huberman A. Qualitative data analysis. 2. London: Sage; 1994.
    1. Henwood K, Pidgeon N. Qualitative research and psychological theorizing. British J Psychol. 1992;83:97–111. doi: 10.1111/j.2044-8295.1992.tb02426.x.
    1. DeVellis R. Scale development: theory and applications. 2. London: Sage; 2003.
    1. Costello A, Osborne J. Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Prac Assess Res Eval. 2005;10:1–9.
    1. Tabachnick B, Fidell L. Using multivariate statistics. New York: HarperCollins College Publishers; 1996. Multiple regression; pp. 127–193.
    1. Bower P, Kennedy A, Reeves D, Rogers A, Blakeman T, Chew-Graham C. et al.A cluster randomised controlled trial of the clinical and cost-effectiveness of a ‘whole systems’ model of self-management support for the management of long-term conditions in primary care: trial protocol. Implement Science. 2012;7:1–13. doi: 10.1186/1748-5908-7-1.
    1. Campbell J, Smith P, Nissen S, Bower P, Elliott M, Roland M. The GP Patient Survey for use in primary care in the National Health Service in the UK - development and psychometric characteristics. BMC Fam Pract. 2009;10:57. doi: 10.1186/1471-2296-10-57.
    1. Kennedy A, Reeves D, Bower P, Lee V, Middleton E, Richardson G. et al.The effectiveness and cost effectiveness of a national lay led self care support programme for patients with long-term conditions: a pragmatic randomised controlled trial. J Epidemiol Comm Health. 2007;61:254–261. doi: 10.1136/jech.2006.053538.
    1. Kline P. An Easy Guide to Factor Analysis. London and New York: Routledge; 1994. Principal components analysis; pp. 28–41.
    1. Cronbach L. Cronbach alpha and the internal structure of tests. Psychometrika. 1951;16:297–334. doi: 10.1007/BF02310555.
    1. Fife BL. The measurement of meaning in illness. Soc Sci Med. 1995;40:1021–1028. doi: 10.1016/0277-9536(94)00174-R.
    1. Fife B, Scott L, Fineberg N, Zwickl B. Promoting adaptive coping by persons with HIV disease: evaluation of a patient/partner intervention model. J Assoc Nurs AIDS Care. 2008;19:75–84. doi: 10.1016/j.jana.2007.11.002.
    1. Fife B. The role of constructed meaning in adaptation to the onset of life-threatening illness. Soc Sci Med. 2005;61:2132–2143. doi: 10.1016/j.socscimed.2005.04.026.
    1. Bevvino D, Sharkin B. Divorce adjustment as a function of finding meaning and gender differences. J Divorce Remarriage. 2003;39:81–97. doi: 10.1300/J087v39n03_04.
    1. Lorig K, Stewart A, Ritter P, Gonzalez V, Laurent D, Lynch J. Outcome measures for health education and other healthcare interventions. London: SAGE Publications; 1996.
    1. Lorig K, Sobel D, Ritter P, Laurent D, Hobbs M. Effect of a self-management program for patients with chronic disease. Effect Clin Pract. 2001;4:256–262.
    1. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (Part II) Health Promot Pract. 2005;6:148–156. doi: 10.1177/1524839904266792.
    1. Kennedy A, Rogers A, Bower P. Support for self care for patients with chronic disease. BMJ. 2007;335:968–970. doi: 10.1136/bmj.39372.540903.94.
    1. Glasgow R, Wagner E, Schaefer J, Mahoney L, Reid R, Greene S. Development and validation of the Patient Assessment of Chronic Illness Care (PACIC) Med Care. 2005;43:436–444. doi: 10.1097/01.mlr.0000160375.47920.8c.
    1. Wagner E, Austin B, Von Korff M. Organizing care for patients with chronic illness. Milbank Q. 1996;74:511–544. doi: 10.2307/3350391.
    1. Roland M, Elliott M, Lyratzopoulos G, Barbiere J, Parker R, Smith P. et al.Reliability of patient responses in pay for performance schemes: analysis of National General Practitioner Patient Survey data in England. BMJ. 2009;339:1–6.
    1. Howie J, Heaney D, Maxwell M, Walker J. A comparison of Patient Enablement Instrument (PEI) against two established satisfaction scales as an outcome measure of primary care consultations. Fam Pract. 1998;15:165–171. doi: 10.1093/fampra/15.2.165.
    1. Howie JGR, Heaney DJ, Maxwell M, Walker JJ, Freeman GK, Rai H. Quality at general practice consultations: cross sectional survey. BMJ. 1999;319:738–743. doi: 10.1136/bmj.319.7212.738.
    1. Hansson L, Bjorkman T. Empowerment in people with a mental illness: reliability and validity of the Swedish version of an empowerment scale. Scand J Caring Sci. 2005;19:32–38. doi: 10.1111/j.1471-6712.2004.00310.x.
    1. Shiu A, Martin C, Thompson D, Wong R. Psychometric properties of the Chinese version of the Diabetes Empowerment Scale. Psychol Health Med. 2006;11:198–208. doi: 10.1080/13548500500286845.
    1. Lloyd C, King R, Moore L. Subjective and objective indicators of recovery in severe mental illness: a cross-sectional study. Int J Soc Psychiat. 2009;24:425–434.
    1. Leskell J, Funnell M, Sandberg G, Smide B, Wiklund G, Wikblad K. Psychometric properties of the Swedish Empowerment Scale. Scand J Caring Sci. 2007;21:247–252. doi: 10.1111/j.1471-6712.2007.00463.x.
    1. Strack KM. Understanding empowerment, meaning, and perceived coercion in individuals with serious mental illness. J Clin Psychol. 2009;65:1137–1148. doi: 10.1002/jclp.20607.
    1. Peterson R, Grippo K, Tantleff-Dunn S. Empowerment and powerlessness: a closer look at the relationship between feminism, body image and eating disturbance. Sex Roles. 2008;58:639–648. doi: 10.1007/s11199-007-9377-z.
    1. Vauth R, Kleim B, Wirtz M, Corrigan P. Self-efficacy and empowerment as outcomes of self-stigmatizing and coping in schizophrenia. Psychiat Res. 2007;150:71–80. doi: 10.1016/j.psychres.2006.07.005.
    1. Tsay S, Hung L. Empowerment of patients with end-stage renal disease- a randomized controlled trial. Int J Nurs Stud. 2004;41:59–65. doi: 10.1016/S0020-7489(03)00095-6.
    1. Rodwell C. An analysis of the concept of empowerment. J Adv Nurs. 1996;23:305–313. doi: 10.1111/j.1365-2648.1996.tb02672.x.
    1. Hokanson Hawks J. Empowerment in nursing education: concept analysis and application to philosophy, learning and instruction. J Adv Nurs. 1992;17:609–618. doi: 10.1111/j.1365-2648.1992.tb02840.x.
    1. Ellis-Stoll C, Popkess-Vawter S. A concept analysis on the process of empowerment. Adv Nurs Sci. 1998;21:62–68.
    1. Jormfeldt H, Arvidsson B, Svensson B, Hansson L. Construct validity of a health questionnaire intended to measure the subjective experience of health among patients in mental health services. J Psychiat Mental Health Nurs. 2008;15:238–245. doi: 10.1111/j.1365-2850.2007.01219.x.
    1. Chiba R, Miyamoto Y, Kawakami N. Reliability and validity of the Japanese version of the Recovery Scale (RAS) for people with chronic mental illness: scale development. Int J Nurs Stud. 2010;47:314–322. doi: 10.1016/j.ijnurstu.2009.07.006.
    1. Corrigan PW, Faber D, Rashid F, Leary M. The construct validity of empowerment among consumers of mental health services. Schizo Res. 1999;38:77–84. doi: 10.1016/S0920-9964(98)00180-7.
    1. Svedberg P, Svensson B, Arvidsson B, Hansson L. The construct validity of a self-report questionnaire focusing on health promotion interventions in mental health services. J Psychiat Mental Health Nurs. 2007;14:566–572. doi: 10.1111/j.1365-2850.2007.01129.x.
    1. Abdoli S, Ashktorab T, Ahmadi F, Parvizi S, Dunning T. The empowerment process in people with diabetes: an Iranian perspective. Int Nurs Rev. 2008;55:447–453. doi: 10.1111/j.1466-7657.2008.00664.x.
    1. Freeman G, Walker J, Heaney D, Howie J. Personal continuity and the quality of GP consultations. Euro J Gen Pract. 2002;8:90–4. doi: 10.3109/13814780209160846.
    1. Little P, Everitt H, Williamson I, Warner G, Moore M, Gould C. et al.Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ. 2001;323:908–911. doi: 10.1136/bmj.323.7318.908.
    1. Swarbrick M, Schmidt L, Pratt C. Consumer-operated self-help centers: environment, empowerment, and satisfaction. J Psychosoc Nurs Mental Health Serv. 2009;47:40–47. doi: 10.3928/02793695-20090527-03.
    1. Holmstrom I, Roing M. The relation between patient-centeredness and patient empowerment: a discussion on concepts. Pat Educ Couns. 2010;79:167–172. doi: 10.1016/j.pec.2009.08.008.
    1. Nyatanga L, Dann L. Empowerment in nursing: the role of philosophical and psychological factors. Nurs Philos. 2002;3:234–239. doi: 10.1046/j.1466-769X.2002.00107.x.
    1. Aujoulat I, d'Hoore W, Deccache A. Patient empowerment in theory and practice: polysemy or cacophony? Pat Educ Couns. 2007;66:13–20. doi: 10.1016/j.pec.2006.09.008.
    1. Wowra S, McCarter R. Validation of the Empowerment Scale with an outpatient mental health population. Psyciat Serv. 1999;50:959–961.
    1. Corrigan PW. Impact of consumer-operated services on empowerment and recovery of people with psychiatric disabilities. Psychiat Serv. 2006;57:1493–1496. doi: 10.1176/appi.ps.57.10.1493.
    1. Viklund G, Ortqvist E, Wikblad K. Assessment of an empowerment education programme: a randomized study in teenagers with diabetes. Diab Med. 2007;24:550–556. doi: 10.1111/j.1464-5491.2007.02114.x.
    1. Nunnally J. Psychometric theory. 2. New York: McGraw-Hill; 1978.
    1. Beatty PC, Willis GB. Research synthesis: the practice of cognitive interviewing. Pub Opinion Quart. 2007;71:287–311. doi: 10.1093/poq/nfm006.
    1. Department of Health. Supporting people with long-term conditions: an NHS and social care model to support local innovation and integration. London: Stationery Office; 2005.
    1. Department of Health. Choosing health: making healthy choices easier. London: Stationery Office; 2004.
    1. Adler R, Vasiliadis A, Bickell N. The relationship between continuity and patient satisfaction: a systematic review. Fam Pract. 2010;27:171–178. doi: 10.1093/fampra/cmp099.
    1. Jee S, Cabana M. Indices for continuity of care: a systematic review of the literature. Med Care Res Rev. 2006;63:158–188. doi: 10.1177/1077558705285294.
    1. Goetz C, Coste J, Lemetayer F, Rat A, Montel S, Recchia S. et al.Item reduction based on rigorous methodological guidelines is necessary to maintain validity when shortening composite measurement scales. J Clin Epidemiol. 2013;66:710–718. doi: 10.1016/j.jclinepi.2012.12.015.
    1. Bonvicini KA. Impact of communication training on physician expression of empathy in patient encounters. Pat Edu Couns. 2009;75:3–10. doi: 10.1016/j.pec.2008.09.007.
    1. Protheroe J, Bower P, Chew-Graham C. The use of mixed methodology in evaluating complex interventions: identifying patient factors that moderate the effects of a decision aid. Fam Pract. 2007;24:594–600. doi: 10.1093/fampra/cmm066.
    1. Weinman J, Petrie K, Moss-Morris R, Horne R. The Illness Perception Questionnaire: a new method for assessing illness perceptions. Psychol Health. 1996;11:431–445. doi: 10.1080/08870449608400270.
    1. Hibbard J, Stockard J, Mahoney E. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. HSR. 2004;39:1005–1026.
    1. Rasch G. Probabalistic models for some intelligence and attainment tests. Chicago: University of Chicago Press; 1980.
    1. Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Pat Edu Couns. 2010;79:36–42. doi: 10.1016/j.pec.2009.10.001.

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