Patient empowerment in diabetes – past debates and new perceptions
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Most of us would agree with the concept that, as European health- care professionals (HCPs), we should all be working towards a model which ‘empowers’ people with diabetes to successfully self- manage their condition. After this concordance the road is less clear on what is actually meant by the term ‘empowerment’ and even less so ‘successful self-management’. These terms, and the suppositions which underpin them, have been the subject of various debates which have been reported in this journal 1 and elsewhere 2 over the past few years. It appears timely to review them now and is perhaps especially pertinent for nurses in European countries which are at different stages of healthcare development as the global diabetes pandemic takes hold. In 2007 Asimakopoulou 1 reminded us of the outdated notion of patient ‘compliance’ with regards to diabetes management. This referred more to prescribed medication which was no longer applicable to the multiple aspects of self-care needed to manage the condition. Compliance also refers to a more paternalistic kind of man- agement where ‘doctor knows best’ and the patient is the passive recip- ient of care. Although we know this is still an issue in some countries, it is generally accepted that in chronic conditions such as dia- betes, it is the patient who is the expert of their condition because he or she lives with it every day and makes decisions over such things as medication, injections, nutrition and exercise. 3 Patients will not only make choices based on health, but also on social, economic and family circumstances. It has been proposed, therefore, that people with diabetes are largely, or should be, in control of their own condition and have responsibility for it. To be success- ful in this and make the right choices with regards to their lives people need to be ‘empowered’, that is they need to have the aware- ness and understanding of what diabetes is and the proficiency to make the right choices and deci- sions regarding their diabetes self- care. It is healthcare professionals, usually nurses, who are key to giv- ing the support, education and knowledge needed for patients to be empowered in this way. Such support and training for patients to be empowered to man- age diabetes is problematic because everyone has a different level of education, there are also cultural differences, language barriers, psy- chological difficulties, cognitive decline, problems with ageing, social hurdles and myriad other things which interfere with the empowerment of patients on their road to successful diabetes self care. There is also lack of resources, dif- ferences in health service provi- sion, health inequities and the notion that some people will not want to manage their diabetes and those who really cannot self-care anyway due to other mental or social problems. Professionals will also need specialist training if they are to have the necessary skills to empower. So what is meant by the term empowerment, as the idea is some- what open to a variety of interpreta- tions? 2 If we accept Anderson’s notion of a process which is truly individual and concerns the oppor- tunity for patients to express their needs and concerns with a diabetes expert in order to optimise self- care, then all the difficulties above can be acknowledged and ways devised to overcome these barriers. For example, we reported in the last edition of European Diabetes Nursing ways in which HCPs were working with migrant groups to educate them on food choices and diabetes. 4 In the UK, the Year of Care study is all about collabora- tively devising a strategy or agreeing a way forward for action, or goals to be achieved in diabetes manage- ment which are both reasonable and possible. 5 Empowerment therefore must be considered as a route by which we increase our patient’s ability to self-manage their diabetes, and it also has an outcome – the increase of self-efficacy in our patients. 2 It is a collaboration of different kinds of experts. But using the expert route is not the only way that patients are ‘empowered’. In an interview with older adults with type 2 diabetes mellitus (T2DM) it was everyday liv- ing experience which gave people confidence to make the choices which were appropriate for their quality of life, and some of those choices were very different from those recommended by HCPs. 6 People are also ‘empowered’ in a variety of other ways – by joining self-help groups, community health and religious groups, reading books and accessing the internet. Patient empowerment in diabetes – past debates and new perceptions Gillian Hood 77 Copyright © 2010 FEND. Published by John Wiley & Sons EDN Autumn 2010 Vol. 7 No. 2 Talking Point
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Transcript of Patient empowerment in diabetes – past debates and new perceptions
Most of us would agree with the concept that, as European health-care professionals (HCPs), weshould all be working towards amodel which ‘empowers’ peoplewith diabetes to successfully self-manage their condition. After thisconcordance the road is less clear onwhat is actually meant by the term‘empowerment’ and even less so‘successful self-management’. Theseterms, and the suppositions whichunderpin them, have been the subject of various debates which havebeen reported in this journal1 andelsewhere2 over the past few years. Itappears timely to review them nowand is perhaps especially pertinentfor nurses in European countrieswhich are at different stages ofhealthcare development as theglobal diabetes pandemic takes hold.
In 2007 Asimakopoulou1
reminded us of the outdatednotion of patient ‘compliance’ withregards to diabetes management.This referred more to prescribedmedication which was no longerapplicable to the multiple aspectsof self-care needed to manage thecondition. Compliance also refersto a more paternalistic kind of man-agement where ‘doctor knows best’and the patient is the passive recip-ient of care. Although we know thisis still an issue in some countries, itis generally accepted that inchronic conditions such as dia-betes, it is the patient who is theexpert of their condition becausehe or she lives with it every day andmakes decisions over such things asmedication, injections, nutritionand exercise.3 Patients will not onlymake choices based on health, but
also on social, economic and familycircumstances.
It has been proposed, therefore,that people with diabetes arelargely, or should be, in control oftheir own condition and haveresponsibility for it. To be success-ful in this and make the rightchoices with regards to their livespeople need to be ‘empowered’,that is they need to have the aware-ness and understanding of whatdiabetes is and the proficiency tomake the right choices and deci-sions regarding their diabetes self-care. It is healthcare professionals,usually nurses, who are key to giv-ing the support, education andknowledge needed for patients tobe empowered in this way.
Such support and training forpatients to be empowered to man-age diabetes is problematic becauseeveryone has a different level ofeducation, there are also culturaldifferences, language barriers, psy-chological difficulties, cognitivedecline, problems with ageing,social hurdles and myriad otherthings which interfere with theempowerment of patients on theirroad to successful diabetes self care.There is also lack of resources, dif-ferences in health service provi-sion, health inequities and thenotion that some people will notwant to manage their diabetes andthose who really cannot self-careanyway due to other mental orsocial problems. Professionals willalso need specialist training if theyare to have the necessary skills toempower.
So what is meant by the termempowerment, as the idea is some-
what open to a variety of interpreta-tions?2 If we accept Anderson’snotion of a process which is trulyindividual and concerns the oppor-tunity for patients to express theirneeds and concerns with a diabetesexpert in order to optimise self-care, then all the difficulties abovecan be acknowledged and waysdevised to overcome these barriers.For example, we reported in thelast edition of European DiabetesNursing ways in which HCPs wereworking with migrant groups toeducate them on food choices anddiabetes.4 In the UK, the Year ofCare study is all about collabora-tively devising a strategy or agreeinga way forward for action, or goals tobe achieved in diabetes manage-ment which are both reasonableand possible.5
Empowerment therefore mustbe considered as a route by whichwe increase our patient’s ability toself-manage their diabetes, and italso has an outcome – the increaseof self-efficacy in our patients.2 It isa collaboration of different kinds ofexperts. But using the expert routeis not the only way that patients are‘empowered’. In an interview witholder adults with type 2 diabetesmellitus (T2DM) it was everyday liv-ing experience which gave peopleconfidence to make the choiceswhich were appropriate for theirquality of life, and some of thosechoices were very different fromthose recommended by HCPs.6
People are also ‘empowered’ in avariety of other ways – by joiningself-help groups, community healthand religious groups, readingbooks and accessing the internet.
Patient empowerment in diabetes – pastdebates and new perceptionsGillian Hood
77Copyright © 2010 FEND. Published by John Wiley & SonsEDN Autumn 2010 Vol. 7 No. 2
Talking Point
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So there may be a communityempowerment process also featur-ing in our patients’ lives as well aslocal political and social empower-ment influences. Measuring theeffectiveness of patient empower-ment in a meaningful standardised,objective way is always very difficultbecause firstly, no one definition ofempowerment has been agreed,and secondly, because there areconfounding factors which wouldinterfere with such a measurement.Nevertheless, numerous studieswhich expect the enhanced knowl-edge of patients and the improve-ment of self-efficacy are now beingundertaken.7
In the most recent article fromAsimakopoulou which follows onpage 79, there has been a sugges-tion that the definition of empow-erment has moved from enablingpatients to take responsibility fortheir own care to the concept that itis providing patients with what theywant or need. This may go againstthe professional Hippocratic oathof doctors to ‘first do no harm’ ifpatients are free to make the wrongchoices. Readers will need to makeup their own mind here on this def-inition of empowerment. What
must be noted is that theHippocratic Oath has moved onsomewhat. Duties of doctors nowembrace the notion that they mustwork in partnership with patients,listen to them, give them informa-tion, respect their right to reachdecisions, and to support patientsin their endeavours to help them-selves.5 Similarly the overridingtheme for European nursing insociety is to assist individuals andtheir families to determine andachieve their physical, mental andsocial well-being and to do sowithin the challenges of the sur-rounding environment.The other aspects to be noted here,but which have not been consid-ered in the literature, is the userpoint of view. What do patientsthink of this new ‘empowerment’approach? Have they notedchanges to the way their diabetesconsultation is conducted and dothey agree? It would seem that viewswill also vary but that the main out-come is positive.7 Perhaps the prob-lem still lies with the lack of under-standing or misconception aroundthe term ‘empowerment’. Perhapsalso the problem with the term‘empowerment’ is that it can also
be defined as authorisation whichwould also be misleading. In whichcase should we be talking moreabout patient-centred care? Whilethese academic debates continuearound definition and semantics, asEuropean nurses, we must standfirm and agree on what empower-ment in diabetes really means – forboth us and our patients.
References1. Asimakopoulou KG. Empowerment in
diabetes: are we ready to test assump-tions? European Diabetes Nursing2007;4:94–7.
2. Anderson RM, Funnell MM. Patientempowerment: myths and misconcep-tions. Patient Education and Counseling2010 79;3:i277–282n press).
3. Department of Health. The ExpertPatient: A new Approach to Chronic dis-ease Self-Management for the 21st
Century. 2001 DoH UK4. Jansa M, Diaz M, Franch J, Vidal M,
Gorris R. Anthropologic study of immi-grant patients with T2DM from Moroccoto Spain. European Diabetes Nursing2010;7:24-28
5. Year of Care http://www.diabetes.nhs.uk/year_of _care/ accessed 30.5.2010.
6. Hood G, Huber J, Gustaffson U,Scambler S, Asimakopoulou K. With agecomes wisdom almost always too late:older adults experiences of T2DM.European Diabetes Nursing 2009;6:23–28.
7. http://www.expertpatients.co.uk/sites/default/files/publications/EVI-DENCE%20FOR%20THE%20HEALTH.pdf [Accessed 30.5.2010].
19–20 September 2010 Federation of European Nurses inDiabetes (FEND) 15th AnnualConference 2010, Stockholm, Swedenwebsite: www.fend.org
20–24 September 2010 46th Annual Meeting of the EuropeanAssociation for the Study of Diabetes(EASD), Stockholm, Sweden website: www.easd.org
21–23 October 2010 1st International Diabetes and ObesityForum (IDOF 2010), Athens, Greece website: www.idof2010.com
27–30 October 2010International Society for Pediatric andAdolescent Diabetes (ISPAD) 2010,Buenos Aires, Argentina website: www.ispad.org
30 March–1 April 2011 Diabetes UK Annual ProfessionalConference 2011, London, UK website: www.diabetes.org.uk
1–2 April 2011 11th Annual Spring Meeting onCardiovascular Nursing, Brussels,Belgium website: www.escardio.org/nursing
17–19 September 2010Diabetic Foot Study Group, 9thScientific Meeting (DFSG), UppsalaSweden website: www.dfsg.org
7–10 October 2010Annual Meeting of the DiabeticPregnancy Study Group (DPSG),Warsaw, Poland website: www.dpsg.nu
25–28 May 201118th European Congress on Obesity,Istanbul, Turkey website: www.easoobesity.org
Dates for your Diary
Copyright © 2010 FEND. Published by John Wiley & SonsEDN Autumn 2010 Vol. 7 No. 278
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