Advertisement

Advocacy and Empowerment of Individuals, Families and Communities

  • Dula Pacquiao
Chapter

Abstract

The historical, philosophical, and ethical foundations of patient advocacy and empowerment are presented. These concepts are elaborated using relevant position statements from the World Health Organization, the International Council of Nurses, and the American Nurses Association. Empowerment is viewed as a process and outcome that is closely linked with advocacy. Patient and community empowerment as well as types of advocacy are clustered as individual, organizational, and community/societal levels. The assumptions, processes, and outcomes of patient and community empowerment are drawn from studies from several countries. A special section of research presents barriers and facilitators of empowerment for racial and ethnic minorities and vulnerable populations. A model for culturally competent advocacy and empowerment is used to organize selected strategies. Case studies of patients and populations from three different countries are included.

References

  1. Alegría M, Scribney W, Perez D et al (2009) The role of patient activation on patient provider communication and quality of care for US and foreign born Latino patients. J Intern Med 24:534–541Google Scholar
  2. ANA (2010) Scope and standards of practice. In: Code of ethics for nurses with interpretive statements, 2nd edn. Author, Silver SpringGoogle Scholar
  3. ANA (2015) Code of ethics for nurses with interpretive statements. Nursesbooks.org, Silver SpringGoogle Scholar
  4. Anderson RM, Funnell MM (2010) Patient empowerment: myths and misconceptions. Patient Educ Couns 79(3):277–282.  https://doi.org/10.1016/j.pec.2009.07.025 CrossRefPubMedGoogle Scholar
  5. Aujoulat I, d’Hoore W, Deccache A (2006) Patient empowerment in theory and practice: polysemy or cacophony? Patient Educ Couns.  https://doi.org/10.1016/j.pec.2006.09.008
  6. Barr PJ, Scholl I, Bravo P et al (2015) Assessment of patient empowerment – a systematic review of measures. PLoS One 10(5):e0126553.  https://doi.org/10.1371/journal.pone.0126553 CrossRefPubMedPubMedCentralGoogle Scholar
  7. Bennett O (1999) Advocacy in nursing. Nurs Stand 14(11):40–41CrossRefPubMedGoogle Scholar
  8. Bettes BA, Coleman VH, Zinberg S et al (2007) Cesarean delivery on maternal request: obstetrician-gynecologists’ knowledge, perception, and practice patterns. Obstet Gynecol 109(1):57–66CrossRefPubMedGoogle Scholar
  9. Bodenheimer T, Lorig K, Holman H et al (2002) Patient self-management of chronic disease in primary care. JAMA 288(19):2469–2475CrossRefPubMedGoogle Scholar
  10. Carlisle S (2000) Health promotion, advocacy and health inequalities: a conceptual framework. Health Promot Int 15(4):369–376CrossRefGoogle Scholar
  11. Carman KL, Dardess P, Maurer M et al (2013) Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff 32:223–231. [PubMed: 23381514]CrossRefGoogle Scholar
  12. Carroll J, Minkler M (2000) Freire’s message for social workers: looking back, looking ahead. J Commun Pract 8(1):21–36CrossRefGoogle Scholar
  13. Chen J, Mortensen K, Bloodworth R (2014) Exploring contextual factors and patient activation: evidence from a nationally representative sample of patients with depression. Health Educ Behav 41:614–624. [PubMed: 24786791]CrossRefPubMedGoogle Scholar
  14. Collins C, Rochfort A (2016) Promoting self-management and patient empowerment in primary care. In: Capelli O (ed) Primary care in practice-integration is needed. INTECHOpen.com, Croatia, pp 27–42.  https://doi.org/10.5772/62763 CrossRefGoogle Scholar
  15. Coulter A, Ellins J (2007) Effectiveness of strategies for informing, educating, and involving patients. BMJ 335:24–27CrossRefPubMedPubMedCentralGoogle Scholar
  16. Crawford D, Rutter MJ, Manley C et al (2002) Systematic review of involving patients in the planning and development of health care. BMJ 325:1–5CrossRefGoogle Scholar
  17. Cunningham P, Hibbard J, Gibbons C (2011) Raising low ‘patient activation’ rates among Hispanic immigrants may equal expanded coverage in reducing access disparities. Health Aff 30:1888–1894. [PubMed: 21976331]CrossRefGoogle Scholar
  18. Davey Smith G, Dorling D, Gordon D et al (1999) The widening health gap: what are the solutions? Crit Public Health 9(2):151–170CrossRefGoogle Scholar
  19. Douglas MK, Rosenkotter M, Pacquiao DF, Callister LC, Hattar-Pollara M, Lauderdale J, Milstead J, Nardi D, and Purnell L (2014) Guidelines for implemenbting culturally competent nursing care. J Transcult Nurs 25(2):109–121. https://doi.org/1177/1043659614520998 CrossRefPubMedGoogle Scholar
  20. Entwistle VA, Carter SM, Crib A et al (2010) Supporting autonomy: the importance of clinician-patient relationships. J Gen Intern Med 25(7):741–745CrossRefPubMedPubMedCentralGoogle Scholar
  21. European Network on Patient Empowerment (ENOPE) (2014) About patient empowerment. Available at http://www.enope.eu/patient-empowerment.aspx
  22. Flores G (2006) Language barriers to health care in the United States. N Engl J Med 355:229–231. [PubMed: 16855260]CrossRefPubMedGoogle Scholar
  23. Ford S, Schofield T, Hope T (2002) Barriers to the evidence-based patient choice (EBPC) consultation. Patient Educ Couns 47(2):179–185CrossRefPubMedGoogle Scholar
  24. Foucault M (1980) Power/knowledge: selected interviews and other writings, 1962-1977. Knopf Doubleday, New YorkGoogle Scholar
  25. Freire P (2000) Pedagogy of the oppressed, 30th edn. Bloomsbury Academic, New YorkGoogle Scholar
  26. Gadow S (1989) Clinical subjectivity. Advocacy with silent patients. Nurs Clin North Am 24(2):535–541PubMedGoogle Scholar
  27. Gilkey MB, Earp JA (2009) Defining patient advocacy in the post-quality chasm era. N C Med J 70(2):120–124PubMedGoogle Scholar
  28. Gilligan C (2008) Moral orientation and moral development. In: Bailey A, Cuomo CJ (eds) The feminist philosophy reader. McGraw Hill, Boston, pp 463–466Google Scholar
  29. Hearld LR, Alexander JA (2012) Patient-centered care and emergency department utilization a path analysis of the mediating effects of care coordination and delays in care. Med Care Res Rev 69:560–580. [PubMed: 22813721]CrossRefPubMedGoogle Scholar
  30. Henderson S (2003) Power imbalance between nurses and patients: a potential inhibitor of partnership in care. J Clin Nurs 12(4):501–508CrossRefPubMedGoogle Scholar
  31. Hibbard JH, Greene J, Becker ER et al (2008) Racial/ethnic disparities and consumer activation in health. Health Aff 27:1442–1453. [PubMed: 18780935]CrossRefGoogle Scholar
  32. Holman H, Lorig K (2004) Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Rep 119(3):239–243CrossRefPubMedPubMedCentralGoogle Scholar
  33. Inglis S, Clark R, Mcalister FA et al (2010) Structured telephone support or telemonitoring programmes for patients with chronic heart failure. Cochrane Database Syst Rev.  https://doi.org/10.1002/14651858.CD007228.pub2
  34. Institute of Medicine/IOM (2002) Unequal treatment: confronting racial and ethnic disparities in health care. National Academies Press, Washington, DCGoogle Scholar
  35. International Council for Nurses (ICN) (2012) The ICN code of ethics for nurses. Author, Geneva. Available at: http://jimbergmd.com/Way%20of%20Barefoot%20Doctoring/WEB%20way%20of%20bfd/nurses%20code%20of%20ethics.pdf
  36. James J (2013) Patient engagement. People actively involved in their health and health care tend to have better outcomes—and, some evidence suggests, lower costs. Health Affairs, pp 1–6Google Scholar
  37. Johnson M, Haigh C, Yates-Bolton N (2007) Valuing of altruism and honesty in nursing students: a two-decade replication study. J Adv Nurs 57(4):366–374CrossRefPubMedGoogle Scholar
  38. Kaldoudi E, Makris N (2015) Patient empowerment as a cognitive process. In: Verdier C, Bienkiewicz M, Fred A, et al (eds) The proceedings of HealthInf 2015: 8th international conference on health informatics, Lisbon, Portugal, pp 605–610. ISBN: 978-989-758-068-0Google Scholar
  39. Korda H, Eldridge GN (2012) Payment incentives and integrated care delivery: levers for health system reform and cost containment. Inquiry 48:277–287. [PubMed: 22397058]CrossRefGoogle Scholar
  40. Lawn S, Schoo A (2010) Supporting self-management of chronic health conditions: common approaches. Patient Educ Couns 80(2):205–211.  https://doi.org/10.1016/j.pec.2009.10.006 CrossRefPubMedGoogle Scholar
  41. Lechner FJ, Boli J (2012) The globalization reader, 5th edn. Routledge, LondonGoogle Scholar
  42. Leininger M (1996) Culture care theory, research, and practice. Nurs Sci Q 9(2):71–78CrossRefPubMedGoogle Scholar
  43. Link BG, Phelan J (1995) Social conditions as fundamental causes of disease. Journal of Health and Social Behavior, Extra Issue, pp 80–94CrossRefGoogle Scholar
  44. Lorig K, Ritter PL, Villa FJ et al (2009) Community-based peer-led diabetes self-management: a randomized trial. Diabetes Educ 35:641–651.  https://doi.org/10.1177/0145721709335006. PMID: 19407333CrossRefPubMedGoogle Scholar
  45. Ludman E, Peterson D, Katon W et al (2013) Improving confidence for self-care in patients with depression and chronic illnesses. Behav Med 39:1–6. [PubMed: 23398269]CrossRefPubMedPubMedCentralGoogle Scholar
  46. Macartney S, Bishaw A, Fontenot K (2013) Poverty rates for selected detailed race and Hispanic groups by state and place: 2007–2011. American Community Survey Briefs. Available at: http://www.census.gov/prod/2013pubs/acsbr11-17.pdf 2014
  47. McAllister M, Dunn G, Payne K et al (2012) Patient empowerment: the need to consider it as a measurable patient-reported outcome for chronic conditions. BMC Health Serv Res 12:157. PMID: 22694747CrossRefPubMedPubMedCentralGoogle Scholar
  48. McFarland MR, Wehbe-Alamah HB (2015) Leininger’s culture care diversity and universality: a worldwide nursing theory. Jones and Bartlett, BurlingtonGoogle Scholar
  49. Mola E (2013) Patient empowerment, an additional characteristic of the European definitions of general practice/family medicine. Eur J Gen Pract 19(2):128–131.  https://doi.org/10.3109/13814788.2012.756866 CrossRefPubMedGoogle Scholar
  50. Muenchberger H, Kendall E (2010) Predictors of preventable hospitalization in chronic disease: priorities for change. J Public Health Policy 31(2):150–163.  https://doi.org/10.1057/jphp.2010.3 CrossRefPubMedGoogle Scholar
  51. Murgic L, Hebert PC, Sovic S et al (2015) Patient autonomy: views of patients and providers in transitional (post-communist) country. BMC Med Ethics 16:65.  https://doi.org/10.1186/12910-015-0059-z CrossRefPubMedPubMedCentralGoogle Scholar
  52. Negarandeh R, Oskouie F, Ahmadi F et al (2006) Patient advocacy: barriers and facilitators. BMC Nurs 5:3.  https://doi.org/10.1186/1472-6955-53 CrossRefPubMedPubMedCentralGoogle Scholar
  53. Noddings N (1984) Caring: a feminine approach to ethics and moral education. UC Berkeley, BerkeleyGoogle Scholar
  54. Nutbeam D (1998) Health promotion glossary. Health Promot Int 13(4):349–364CrossRefGoogle Scholar
  55. Nygardh A, Malm D, Wikby K et al (2012) The experience of empowerment in the patient-staff encounter: the patient’s perspective. J Clin Nurs 21:897–904. [PubMed: 22081948]CrossRefPubMedGoogle Scholar
  56. O’Connor AM, Bennett CL, Stacey D et al (2009) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev (3):CD001431Google Scholar
  57. O’Flynn N, Britten N (2006) Does the achievement of medical identity limit the ability of primary care practitioners to be patient-centred? A qualitative study. Patient Educ Couns 60(1):49–56CrossRefPubMedGoogle Scholar
  58. Oxford Dictionary (2017) Advocate. Available at https://en.oxforddictionaries.com/definition/advocacy
  59. Peytremann-Bridevaux I, Arditi C, Gex G et al (2015) Chronic disease management programmes for adults with asthma. Cochrane Database Syst Rev.  https://doi.org/10.1002/14651858.CD007988.pub2
  60. Rappaport J (1981) In praise of paradox: a social policy of empowerment over prevention. Am J Commun Psychol 4:1–25CrossRefGoogle Scholar
  61. Rappaport J (1984) Studies in empowerment: Introduction to the issue. Prev Hum Serv 3:1–7CrossRefGoogle Scholar
  62. Rawls J (1971) A theory of justice. Harvard University Press, BostonGoogle Scholar
  63. Rees S (1991) Achieving power: practice and policy in social welfare. Allen & Unwin, St. LeonardsGoogle Scholar
  64. Renders CM, Valk GD, Griffin S et al (2001) Interventions to improve the management of diabetes mellitus in primary care, outpatient and community settings. Cochrane Database Syst Rev (1):CD001481. PMID: 11279717Google Scholar
  65. Roosevelt E (1958) Excerpt of speech at the UN, NYC in your hands: a guide for community action for the tenth anniversary of the Universal Declaration of Human Rights March 27. Available at http://www.eduplace.com/kids/socsci/nyc/books/bke/sources/bkd_template.jsp?name=roosevelte&bk=bkd&state=ny
  66. Rose SM (1990) Advocacy/empowerment: an approach to clinical practice for social work. J Sociol Soc Welf 17(2):Article 5. Available at: http://scholarworks.wmich.edu/jssw/vol17/iss2/5. Accessed 28 March 2017
  67. Rose SM, Black BL (1985) Advocacy and empowerment: mental health care in the community. Routledge & Kegan Paul, LondonCrossRefGoogle Scholar
  68. Salmon P, Hall GM (2004) Patient empowerment or the emperor’s new clothes. J R Soc Med 97:53–56CrossRefPubMedPubMedCentralGoogle Scholar
  69. Sandman L, Granger BB, Ekman I et al (2012) Adherence, shared decision-making and patient autonomy. Med Health Care Philos 15:115–127CrossRefPubMedGoogle Scholar
  70. Seedhouse D (2004) Health promotion: philosophy, prejudice and practice. Wiley, ChichesterGoogle Scholar
  71. Selanders LC, Crane PC (2012) The voice of Florence Nightingale on advocacy. Online J Issue Nursing 17. Available at http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-17-2012/No1-Jan-2012/Florence-Nightingale-on-Advocacy.html
  72. Shaw BA, Krause N (2001) Exploring race variations in aging and personal control. J Gerontol B Psychol Sci Soc Sci 56:S119–S124CrossRefPubMedGoogle Scholar
  73. Shor I, Freire P (1987) A pedagogy for liberation: dialogues in transforming education. Bergin and Garvey, South HadleyGoogle Scholar
  74. Souliotis K, Agapidaki E, Evangelia L et al (2016) Assessing patient participation in health policy decision making in Cyprus. Int J Health Policy Manag 5(8):461–466CrossRefPubMedPubMedCentralGoogle Scholar
  75. Thompson AGH (2006) The meaning of patient involvement and participation in health care consultations: a taxonomy. Soc Sci Med 64:1297–1310CrossRefPubMedGoogle Scholar
  76. Tronto JC (2012) Partiality based on relational responsibilities: another approach to global ethics. Eth Soc Welf special issue: gender justice. Taylor & Francis 6(3):303–316.  https://doi.org/10.1080/17496535.2012.704058. Accessed 29 March 2017CrossRefGoogle Scholar
  77. UNHRC (1948) Universal declaration of human rights. Available at http://www.ohchr.org/EN/UDHR/Pages/Language.aspx?LangID=eng
  78. Vahdat S, Hamzehgardeshi L, Hessam S et al (2014) Patient involvement in health care decision making: a review. Iran Red Cres Med J 16(1):e12454.  https://doi.org/10.5812/ircmj.12454 CrossRefGoogle Scholar
  79. Vargas-Bustamante A, Chen J (2011) Physicians cite hurdles ranging from lack of coverage to poor communication in providing high quality care to Latino patients. Health Affairs 30:1921–1929. [PubMed: 21976336]CrossRefPubMedGoogle Scholar
  80. Velasquez M, Andre C, Shanks T et al (1990) Justice and fairness. Available at https://www.scu.edu/ethics/ethics-resources/ethical-decision-making/justice-and-fairness/
  81. Wallerstein N (2006) What is the evidence on effectiveness of empowerment to improve health? WHO Regional Office for Europe. Health Evidence Network report, Copenhagen. Available at: http://www.euro.who.int/Document/E88086.pdf Google Scholar
  82. Wallerstein N, Bernstein E (1994) Community empowerment as a basis for healthcare reform. Health Educ Q 21(2):141–148CrossRefPubMedGoogle Scholar
  83. Wang NE, Gisondi MA, Golzari M et al (2003) Socioeconomic disparities are negatively associated with pediatric emergency department aftercare compliance. Acad Emerg Med 10:1278–1284. [PubMed: 14597505]CrossRefPubMedGoogle Scholar
  84. Weingart SN, Zhu J, Chiappetta L et al (2011) Hospitalized patients’ participation and its impact on quality of care and patient safety. International J Qual Health Care 22(3):269–277CrossRefGoogle Scholar
  85. Weingarten SR, Henning JM, Badamgarav E et al (2002) Interventions used in disease management programmes for patients with chronic illness—which ones’ work? Meta-analysis of published reports. BMJ 325(7370):925CrossRefPubMedPubMedCentralGoogle Scholar
  86. WHO (1986) The Ottawa charter for health promotion. Available at http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index4.html
  87. WHO (1995) The world health report 1995-bridging the gaps. Available at http://www.who.int/whr/1995/en/
  88. WHO (2009) WHO guidelines on hand hygiene in health care: first global patient safety challenge clean care is safer care. Available at https://www.ncbi.nlm.nih.gov/books/NBK144022/
  89. Wilkinson RG (1996) Unhealthy societies: the afflictions of inequality. Routledge, New YorkCrossRefGoogle Scholar
  90. Williams DR, Kontos EZ, Viswanath K et al (2012) Integrating multiple social statuses in health disparities research: the case of lung cancer. Health Serv Res 47:1255–1277. [PubMed: 22568674]CrossRefPubMedPubMedCentralGoogle Scholar
  91. Winland-Brown J, Lachman VD, O’Connor Swanson E (2015) The new ‘code of ethics for nurses with interpretive statements’ (2015): practical clinical application part I. Medsurg Nurs 24(4):268–271PubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Dula Pacquiao
    • 1
    • 2
  1. 1.School of NursingRutgers UniversityNewarkUSA
  2. 2.School of NursingUniversity of Hawaii, HiloHiloUSA

Personalised recommendations