ORIGINAL ARTICLE
Evaluation of an intervention to individualise patient education at a nurse-led heart failure clinic: a mixed-method study Anita Ross, Ulla Ohlsson, Karin Blomberg and Margareta Gustafsson
Aims and objectives. The main aim of this study was to evaluate whether addressing the written questions of heart failure patients could individualise the education and increase patient satisfaction. A further aim was to describe the learning needs of patients with newly diagnosed heart failure. Background. Despite well-designed patient education, daily problems and self-care sometimes seem difficult to manage for the patient with heart failure. The literature suggested that nurses should include individualised educational interventions. Design. The study had an evaluative and descriptive design. Methods. A mixed-method approach was used. A quasi-experimental method was used to compare patients in the control group (n = 41), who received regular education at the nurse-led heart failure clinic, with patients in the intervention group (n = 44), who received regular education but also education addressing questions they had written down at home before coming to the clinic. Two instruments were used to investigate, respectively, whether the intervention caused patients to experience a greater sense of involvement in their education and greater satisfaction. The patients’ questions were subjected to manifest content analysis. Results. There was no significant difference in satisfaction with the education between the control group and the intervention group. However, the intervention group did feel more strongly that the information they received was related to their personal situation. The patients’ learning needs before education were categorised as: causes and meaning of illness, control and management of the disease, impact on daily living and future health. Conclusion. Asking heart failure patients to write down their learning needs before the education increases their chances of receiving education based on their individual needs. Relevance to clinical practice. The method is simple and cost-effective and could be a way to improve the patient education and facilitate person-centred care.
What does this paper contribute to the wider global clinical community?
• Asking patients with heart failure
•
•
to write down their learning needs in advance is a simple way to ensure that they receive individualised education based on their personal needs and related to their personal situation. The patients do not ask for education about all topics in the European Society of Cardiology (ESC) guidelines during their first education session. Therefore, education should be offered on further occasions. Nurses engaged in patient education should allow time for discussing with the particular patient any health-related problems he or she may wish to bring up.
Key words: empowerment, heart failure, nursing, patient education, person-centred care Accepted for publication: 9 November 2014
Authors: Anita Ross, RN, MSc, Lecturer, Department of Medicine, € Orebro University Hospital and School of Health and Medical Sci€ ences, Orebro University, Sweden; Ulla Ohlsson, PhD, RN, Senior € Lecturer, School of Health and Medical Sciences, Orebro University, Sweden; Karin Blomberg, PhD, RN, Associate Professor, € School of Health and Medical Sciences, Orebro University, Sweden;
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Margareta Gustafsson, PhD, RN, Associate Professor, School of € € Health and Medical Sciences, Orebro University, Orebro, Sweden Correspondence: Anita Ross, Lecturer, School of Health and € € Medical Sciences, Orebro University, SE–701 82 Orebro, Sweden. Telephone: +46 19 30 37 97. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602, doi: 10.1111/jocn.12760
Original article
Introduction Chronic heart failure (CHF) is a common syndrome among the older people in Europe, afflicting approximately 10–20% of the population in the age range 70–80 years (Dickstein et al. 2008). Self-care is an important part of CHF treatment. To this end patients need education about what CHF involves and about how to handle symptoms and drugs. In Sweden such education is often the responsibility of nurse-led heart failure clinics and follows the European Society of Cardiology (ESC) guidelines concerning CHF (Dickstein et al. 2008). Despite well-designed education, daily problems and self-care sometimes seem difficult to manage for the patient with heart failure (Gonzalez et al. 2005, Ekman et al. 2007, Dickstein et al. 2008). Further work is needed for the improvement of patient education and to make it person-centred.
Background Person-centred care is becoming more prominent in guiding principles for general health care (Leplege et al. 2007, McCormack et al. 2010, Ekman et al. 2011) as well as for the care of patients with heart failure (Dudas et al. 2012, Ekman et al. 2012). Person-centred care implies treating patients as individuals, respecting their rights, building mutual trust and understanding and developing therapeutic relationships (McCormack et al. 2010). It also implies the empowering of patients, giving them an active role in their care (Leplege et al. 2007, Alharbi et al. 2012). In traditional patient education, the patient has often been seen as a recipient of medical decisions and prescriptions. Empowerment-oriented education, on the other hand, is based more on individual needs, on the particular patient’s own life situation and priorities (Aujoulat et al. 2006). Systematic reviews of outcomes of heart failure patient education indicate that self-care improves if the content of the education is individualised, if a combination of media is used and if the education is delivered in more than one session and on a one-on-one basis (Fredericks et al. 2009, Boyde et al. 2011). A conclusion in the reviews was that nurses should include individualised educational interventions having first evaluated patients’ learning needs for improvement of the education A step in this direction, to obtain information about the patients’ learning needs to individualise the education, is for nurses to ask patients to list things they want information about before coming to the clinic. A Cochrane review of interventions to help patients express their learning needs during a medical consultation showed that such interventions usually resulted in © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Intervention for heart failure patient education
a small but nevertheless statistically significant increase in patient knowledge, patient participation and patient satisfaction (Kinnersley et al. 2009). The main aim of the present study was to evaluate whether addressing the written questions of heart failure patients could individualise the education and increase patient satisfaction. A further aim was to describe the learning needs of patients with newly diagnosed heart failure.
Methods Design, setting and sample selection A study with an evaluative and descriptive design was carried out at a Swedish university hospital between April 2008–October 2009. A mixed-method approach was used (Sandelowski 2000): a quasi-experimental method was used to evaluate the intervention and a qualitative method with content analysis was used to describe the patients’ learning needs. The setting, where the study took place, was a nurse-led heart failure clinic where nurses provide education, give the patients general check-ups and adjust medication in collaboration with the doctor. All patients with echocardiographyverified heart failure, who came to the clinic for the first time during the study period, were asked whether they were willing to participate in the study. Patients unable to communicate in Swedish were excluded. Patients in the control group received written information about the study at the visit to the clinic. After the education they were contacted by telephone, received oral information and were asked for informed consent. Patients in the intervention group were contacted by telephone before the visit to the clinic, received oral information and were asked for informed consent. Those who agreed to participate received written information about the study by mail and an invitation to write down personal questions they wanted answered during the education.
Procedure The patients in the control group received regular education from three experienced heart failure nurses at the clinic, all of whom followed the recommendations in the ESC guidelines. These guidelines cover such educational topics as definition and aetiology of heart failure, symptoms and signs of heart failure, pharmacological treatment, risk factor modification, diet recommendations, exercise recommendations, sexual activity, immunisation, sleep and breathing disorders, psychosocial aspects and prognosis (Dickstein et al. 2008). The education took place in an ordinary examination room
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and was delivered on a one-on-one basis, sometimes with the patient’s next of kin present. The patients in the intervention group were invited before the visit to the heart failure clinic to write down own questions they wanted answered. The invitation was worded as follows: ‘We are anxious that you should get the information you need about your health problem or illness. Write down the questions you want answered during your visit to the heart failure clinic’. At the clinic they handed the written questions to the nurse. They received regular education just like the control group, but also education addressing their written questions. The control group were included first in the study to avoid the risk of their education being influenced by the learning needs expressed by the patients in the intervention group. The education was delivered by the same personnel in both groups.
Data collection Data were collected by means of postal questionnaires sent to the patients within seven days after they had received education at the clinic. For analysis of baseline differences, the questionnaires collected data about characteristics such as age, sex, family situation and education. With use of data from medical records, patients’ state of health was investigated by means of the New York Heart Association (NYHA) classification (I–IV), which describes the severity of heart failure on the basis of the symptoms and exercise capacity. NYHA class I patients have no physical limitations or symptoms in connection with normal physical activity; NYHA class II patients have slight limitation of physical activity; NYHA class III patients have marked limitation of physical activity but are still comfortable at rest; and NYHA class IV patients are unable to carry on any physical activity without discomfort and have symptoms at rest (Dickstein et al. 2008). For evaluating the outcome of the intervention, instruments were used to investigate, respectively, whether the intervention caused patients to experience a greater sense of involvement in their education and greater satisfaction. The Empowerment Questionnaire (EQ) was used to ascertain whether the patients perceived themselves as being involved in the education and perceived it to be related to their own situation. The EQ is a self-rating scale with content based on definitions of empowerment found in the literature and reviewed by patient educators for content validity (Pellino et al. 1998). The scale has been used in earlier studies to evaluate empowerment models of education (Pellino et al.1998, Johansson et al. 2007). It contains ten statements reflecting key components of empowerment-oriented
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education: encouraging the patient to make choices about what to learn (2), actively involving the patient in the learning process (1), making information easy to understand (2), focusing on the patient’s concerns related to daily life (2) and creating a physically (1) and psychologically (2) comfortable learning environment. The response format is a five-point Likert scale ranging from 1 = strongly disagree to 5 = strongly agree. The items are summed and divided by ten for the calculation of the total empowerment score (1– 5). For the purposes of this study the EQ was rendered into Swedish by means of back-translation (Streiner & Norman 2008). Cronbach’s alpha was 097, showing that the translated version of the scale had a reliability similar to that of the original version used in previous studies (Pellino et al.1998, Johansson et al. 2007). The Numeric Rating Scale (NRS) was used to measure patients’ satisfaction with the education. The scale is generally used in clinical work to measure pain (Gagliese et al. 2005). It is a 10-point scale where 0, in this study, is ‘not at all satisfied’ and 10 is ‘very satisfied’. The patients were asked to circle the number which best represented their satisfaction with the education they had received. The NRS has been tested in psychometric analyses and is to be preferred to other intensity scales in the case of the elderly (Gagliese et al. 2005).
Data analyses Estimation of sample size for evaluation of the intervention, based on the results of a previous study using the same outcome measurement (Pellino et al.1998), suggested that 80 patients (40 in an intervention group and 40 in a control group) would be enough to detect a difference in ratings between the groups (power 085, alpha 005) (Altman 1991). For statistical analyses of baseline differences, we used the Chi-square test for category data and the independent t-test for continuous data. The Mann–Whitney U-test was used for analysis of differences between the groups regarding total empowerment scores and scores for satisfaction with the education. Correlation between experience of empowerment-oriented education and satisfaction with education was investigated by means of Spearman’s rank–order correlation. The significance level was set to 005. The patients’ own written questions were subjected to inductive manifest content analysis as described by Graneheim and Lundman (2004). First the questions from all of the patients were brought together and read over and over again to acquire a sense of the whole. Meaning units were identified corresponding to the aim of the study. The questions had a sufficiently condensed form as part of the process of being put into writing, so there was no need for © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
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further condensation. The next step in the analysis was the coding of the meaning units. The codes were then compared for differences and similarities and sorted into subcategories, which was followed by abstraction into final categories. The analysis was primarily carried out by the first author (AR). However, all the authors read the written questions and discussed the results to seek agreement during the analytical process. Quotations are used to illustrate the findings and increase the validity.
Ethical considerations The study followed the principles outlined in the Declaration of Helsinki. The patients received both written and oral information about the study before they gave their informed consent. In the information it was emphasised that participation was voluntary and could be terminated at any time during the study. The patients were also assured about confidentiality. Permission for the study was obtained from the Regional Ethical Review Board in Uppsala (www.epn.se) (reg. no. 2008/021).
Results
Intervention for heart failure patient education
Assessed for eligibility to the control group (n = 64)
Regular education
Enrolment (n = 64)
Declined participation (n = 4)
Follow up (n = 60) Lost to follow-up – did not return the questionnaires (n = 19) Analysed (n = 41)
Assessed for eligibility to the intervention group (n = 86)
Enrolment (n = 86)
Declined participation (n = 6)
Patient characteristics One hundred and fifty patients with heart failure were contacted and asked about participation. Ten patients declined participation. Of those 60 patients in the control group, who left informed consent, 19 did not return the questionnaire. In the intervention group, 36 out of 80 patients neither brought written questions to the education nor answered the questionnaire at home after the education. In the end, there were 41 patients in the control group and 44 patients in the intervention group (Fig. 1). The age-range was 31–89 years (mean age 70). More than 60% of the patients were men and more than 60% were married or living with a partner. The patients had a generally low level of education. Assessment of the severity of heart failure based on symptoms showed that most of the patients were NYHA class II and III (Table 1). According to the baseline analysis, there were no significant differences between the control and the intervention group with regard to age, sex, family situation, education and health status.
Experiences of empowerment-oriented education and satisfaction with education The patients’ ratings on the EQ were close to the maximum of the scale in both groups. The total scores were somewhat © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Regular education and education addressing personal learning needs
Follow up (n = 80) Lost to follow-up – did not return the questionnaires (n = 36) Analysed (n = 44)
Figure 1 Flow of participants through the study.
higher in the intervention group than in the control group but the difference was not significant (p 0066) (Table 2). However, analyses of differences between the groups regarding scores on each item on the scale revealed that patients in the intervention group more strongly agreed with the statement ‘We talked about how the information related to me and how I could fit it into my daily life’ (p 0027) and the statement ‘I received the information I wanted’ (p 0048). There was a high degree of satisfaction with the education in both the control group (md 9, q1 65, q3 10) and the intervention group (md 10, q1 80, q3 10)
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and the difference was not significant (p 0096). There was a significant correlation between perception of empowerment in the education and satisfaction with the education in both groups (rho 08 and rho 06 respectively p < 0001).
The patients’ learning needs The patients’ learning needs were expressed through the questions written by the patients in the intervention group. Forty-one out of 44 patients had formulated questions they wanted answered, with one patient having formulated no fewer than 19 questions. Some of their questions were very short, some were in the form of long stories about the patient’s present situation. Through the content analysis four categories of learning needs were identified: causes and meaning of illness, control and management of the disease, impact on daily living and future health (Table 3).
What have I got to think about and watch out for to do with my heart? (female, 85) I’ve never had any pain or pressure in my chest. What’s the sign if I get a heart attack? (male, 76)
The patients wanted to know what health-care resources were available. Who, for example, should they contact if they got worse or if they needed more medicine? Are you taking over the treatment completely, or will the healthcare centre be in touch? Can I get in touch with you if I need water tablets? (male, 41)
Patients submitted questions about how to manage to their medical treatment, and there were many questions about the effects and side-effects of drugs. There were also questions about alternative medical treatment, such as the insertion of a pacemaker: How often is there going to be follow-up of what tablets I’m taking? What about new ones? And what about side-effects? Do I
Causes and meaning of illness The possible causes and meaning of heart failure constituted a central question for many patients. There was a large variety of beliefs about possible causes expressed in the written questions:
need all the tablets? What about a pacemaker? (male, 62)
thing inherited? (male, 85)
Impact on daily living Sometimes patients submitted extensive stories about their daily living and how the disease had affected it. Their physical activity, which included both exercise and work, was a frequent topic in this category:
Have I got it from living the wrong way? (male, 71)
You sometimes wonder what you can do, physically, without putt-
What’s the cause of it? Stress? Exercising? Doing shift-work? Some-
I was frightened to death once. Has that affected my heart? (male, 85)
But the patients not only wanted to understand the cause of their heart failure but also to understand why they had specific symptoms: Why am I freezing around the clock? Why is my mouth so dry? Can my reflux symptoms with persistent seizures have something to do with it? (female, 77)
Understanding the meaning of heart failure included understanding one’s physical condition and the effect it had on their heart. How much of my heart is not functioning? (male, 79) What’s my heart’s pumping capacity now? (female, 56)
ing your heart at too much risk. You maybe don’t always realise you’re doing something you shouldn’t be doing. (male, 78)
Some questions had to do with nutrition, whether there was need for adjustment or change. Other questions had to do with such things as going to the dentist or cycling. Some of the patients’ questions were about continuing with hobbies that were of great concern to them. Is it all right for me to weave? It’s my favourite hobby. (female, 78)
The patients sometimes submitted narratives about their health situation and the impact of the symptoms on their life situation: Over the past year my physical condition’s got a lot worse. For quite some time I’ve been feeling a bit of pressure in the heart area but it’s gone away after I’ve rested for a while. A lot’s changed these last months. My balance is starting to get worse. I’ve seen how I’ve put
Control and management of the disease The patients had questions about how to have control and to manage their situation, what they should think of and what they should attend to.
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my foot down wrong without expecting it at all. With a wheeled walker it’s better. If I make any effort I get short of breath and get palpitations – if I walk too fast, say, or do vacuum-cleaning or lift up my arms too high. I have to walk very slowly. (male, 82)
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
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Intervention for heart failure patient education
Table 1 Demographics and health status of the intervention group (n = 44) and the control group (n = 41) at baseline
Variable
Total
Age, m (SD) 70 (SD 123) Sex, n (%) Male, 57 (67) Female 28 (33) Marital status, n (%) Single or widowed 32 (38) Married/living 53 (62) with partner Educational background, n (%) Nine-year 50 (59) compulsory school Upper secondary 20 (23) school Tertiary 15 (18) education NYHA classification, n (%) NYHA class I 3 (3) NYHA class II 38 (45) NYHA class III 43 (51) NYHA class IV 1 (1)
Intervention group
Control group
71 (SD 122)
68 (SD 124)
28 (64) 16 (36)
29 (71) 12 (29)
19 (43) 25 (57)
13 (32) 28 (68)
What sort of future is there for me when I’ve got heart failure? Will I have to take tablets for the rest of my life? Can I get back to 100%? (male, 41)
There were questions about whether they could contract other diseases related to heart failure and about how long their health could be maintained by means of medication. Can life be sustained as long as you like with tablets? Or other medicine? If it can, how long? Is it individual, maybe? (male, 87)
Discussion 24 (54)
26 (63)
10 (23)
10 (24)
10 (23)
5 (12)
0 19 24 1
(0) (43) (55) (2)
3 19 19 0
(8) (46) (46) (0)
Future health The patients wanted information about their future health. They wanted to know whether they were going to be better, stay as they were or get worse. They also had questions about their medical treatment in the future – for instance, whether they would have to take tablets for the rest of their life.
The patients in this study were referred to the nurse-led clinic after they had been diagnosed as having heart failure. They received traditional education from experienced heart failure nurses following ESC guidelines for this education (Dickstein et al. 2008) and the intervention group also received education addressing their learning needs written down before going to the clinic. The main finding was that patients in the intervention group felt more strongly that they had received the information they wanted and that it was related to their personal situation compared to the patients in the control group. The difference was significant. Thus, it would seem that asking the patients to write down their own questions to be answered during the education ensures that this education is tailored to the patient’s particular situation and needs. According to a review, individualised patient education is the most effective means for extending self-care knowledge and improving self-care behaviour (Fredericks et al. 2009). Taking the individual’s perspective into account in the education is consistent with
Table 2 Differences between the intervention group (n = 44) and the control group (n = 41) with regard to scoring of the items on the Empowerment Questionnaire Intervention group n = 44
Control group n = 41
Items on the empowerment questionnaire
Md
q1
q3
Md
q1
q3
p-Value
I felt I was actively involved in the learning I was able to make choices about the learning I received the information I wanted The information was easy to understand Medical terms were explained The learning was done in a comfortable place My point of view was respected I felt free to raise issues I felt comfortable discussing my concerns and fears We talked about how the information related to me and how I could fit it into my daily life Total empowerment score
5 5 5 5 5 5 5 5 5 5
4 325 4 4 3 4 4 5 5 4
5 5 5 5 5 5 5 5 5 5
5 4 5 5 5 4 5 5 5 4
35 3 35 35 4 3 4 4 4 3
5 5 5 5 5 5 5 5 5 5
0123 0203 0048 0216 0853 0134 0326 0381 0108 0027
48
41
5
46
36
49
0066
Md, the median; q1, the lower quartile; q3, the upper quartile.
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Category
Cause of heart failure Meaning of heart failure Cause of symptoms and signs
Cause and meaning of illness
Self-care Medical treatment Alternative treatment Care-giver contact
Control and management of the disease
Impact on activity Impact on lifestyle Impact of symptoms and signs Threat to health Prognosis
Impact of daily living
Future health
the fundamental principle in person-centred care to not reduce the person to a patient (Leplege et al. 2007, McCormack et al. 2010, Ekman et al. 2011). Using the method tested in this study could be a way to make the patient education more person-centred, which could have several benefits for the patient with heart failure. Person-centred care has been implemented to some extent in the care of patients with chronic heart failure in Sweden and has shown positive outcomes such as shorter stay in hospital with maintaining health-related quality of life (Ekman et al. 2012) and reduced uncertainty in illness (Dudas et al. 2012). In the ESC guidelines (2008) it is emphasised that teaching should focus on adherence to treatment and self-care management (Dickstein et al. 2008). Earlier studies have also shown that heart failure patients perceive educational topics in the guidelines as important (Chan et al. 2003, Clark & Lan 2004, Boyde et al. 2009). In this study, the analysis of the content of the patients’ written questions confirmed that teaching should include information listed in the guidelines, i.e. information on the aetiology of heart failure, pharmacological treatment, exercise and prognosis. On the other hand neither diet nor sexual activity received much mention in the patients’ questions. Thus, during the first educational session the patients did not seem to direct their attention to all possible topics. This is consistent with the suggestion that the education should be spread over more than one session (Fredericks et al. 2009). It is also worth noting, that the patients not only wanted information about issues related to heart failure but also about causes of illness in general. Unexpectedly, patients sometimes handed in extensive narratives about different kinds of problems in everyday life deriving from their illness. Thus, there were certain patients who evidently had a need to share their knowledge about
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living with CHF and the limitations that it meant for them. This indicates a desire to be seen as a person and not just a patient with newly diagnosed heart failure. Written extensive narratives might also indicate a need for the patients to have their challenging situation confirmed. Here, the nurse is of great importance. It is important that nurses acknowledge and show respect to the patient as an individual. Confirmatory communication is a key factor with regard to empowering the patient (Aujoulat et al. 2006, Virtanen et al. 2007), and empowerment of the patient is at the heart of person-centred care (Leplege et al. 2007, Alharbi et al. 2012). Asking the patients to write down their learning needs before the education represents a simple and cost-effective method that could be used in all patient education. Nevertheless, it may be questioned whether it is a useful method for all patients. Many patients in this study did not take the opportunity to write down questions and have them answered by the nurses. A limitation of this study was that the reasons for not bringing questions were not clarified. Possible explanations are that the patients belonged to the older generation not accustomed to participating in care, or that they had not yet acquired insight into the problems associated with their disease, or simply had problems formulating questions in writing. No matter what the explanation was, it did not necessarily imply that the patients had no questions. When using this method, it is important that nurses give the patients opportunity to orally communicate their learning needs. The patients in the control group reported high levels of empowerment in connection with the education. This was unexpected, as traditional compliance-oriented education and individualised empowerment-oriented education are often seen as representing two totally different approaches (Aujoulat et al. 2006, Anderson & Funnell 2010). A possible explanation is that the nurses had been influenced by the results of earlier Swedish studies showing that education should to a larger extent be based on patients’ individual information needs (Str€ omberg 2002, Ekman et al. 2007). Using an empowerment-oriented approach in patient education does not mean disregarding the ESC guidelines. Health-care professionals using such an approach are still responsible for seeing that the patients get adequate information enabling them to make thoughtful decisions about their own care (Anderson & Funnell 2010). This is also in agreement with the principle of partnership in person-centred care (McCormack et al. 2010, Ekman et al. 2011). Some limitations of the study must be taken into consideration. When a power-analysis was done in the planning phase, we estimated a lower level of empowerment and sat© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Original article
isfaction with education in the control group. The expected difference turned out to be overestimated. Further research should consider the inclusion of more patients in the sample. Using another instrument than EQ should also be considered, as the ratings were close to the ceiling of the scale in both groups. A more sensitive scale would perhaps have shown bigger differences between the groups. The EQ is poorly tested and the constructors of the scale have only given information about content validity (Pellino et al. 1998). The EQ has been criticised for evaluating the general satisfaction rather than the empowerment process (Aujoulat et al. 2006). With regard to some of the items (e.g. ‘The information was easy to understand’) we would agree, but other items (e.g. ‘I felt I was actively involved in the learning’ and ‘I was able to make choices about learning’) would seem to be well in accord with the empowerment process. In any case, the translated scale needs to undergo psychometric testing before use in further research. In a study employing an experimental method, a random allocation of patients is preferable with more control of sample selection bias. However, in experimental design it is even more important that the intervention is not given to the control group. Therefore, we included the control group first to be confident that the nurses delivered regular education to the control group in the usual way. The fact that attrition was greater in the intervention group compared to the control group also increased the risk of unequal groups. However, statistical analysis of baseline data did not show any differences between the groups. Concerning intervention bias, the education followed the ESC guidelines in both groups. There seemed to be no need for briefing before the education as all three nurses had long experience of education in the nurse-led heart failure clinic. The patients were free to ask questions in both groups, and the only difference between them was that the patients in the intervention group had prepared questions at home. The nurses did not document the timing of sessions in the groups. The exact timing of sessions is difficult to measure because the education is often integrated with other activities, e.g. adjustments of medication. A content analysis was used to investigate the patients’ written questions. Sometimes the questions were short, sometimes they took the form of extensive narratives – but the overall content was varied and richer than expected. Credibility is a question of how to judge the similarities within and differences between categories. To achieve credibility, we together discussed each step in the analytical process. Also, a table illustrating sub-categories underpinning each category was used to facilitate judging the credibility of the findings (Graneheim & Lundman 2004). The mixed© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
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method approach was effective in providing complementary knowledge about the topic in question.
Conclusion The results of the study showed that asking patients with heart failure to write down their learning needs before the education increased their chances of receiving individualised education, i.e. the education that they wanted and that was related to their own daily life. Thus, the evaluated educational method is useful for nurses who in the patient education want to have a person-centred approach to the patient. The analysis of the patients’ learning needs revealed that they had a need to talk about the impact of the disease on their daily life. Nurses should allow time during the patient education for the patients to discuss daily issues related to their health situation.
Relevance to clinical practice Encouraging patients to write down their own questions before the education can be easily done by means of a few words in the invitation preceding attendance at the clinic. The method is simple and cost-effective and could be used in all patient education to make the education more individualised. Nurses should consider what topics in the ECS guidelines to discuss during the first education session and be sure to have enough time for discussing the patients’ experiences of issues in their daily life related to their health situation. Further research is needed, not only concerning this method but also concerning other methods for the improvement of patient education. Randomised controlled trials investigating different interventions to improve education, with follow-ups of outcomes, would give useful knowledge to nurses providing education for patients.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conflict of interest The authors have no conflict of interest to declare.
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References Alharbi TSJ, Ekman I, Olsson LE, Dudas K & Carlstr€ om E (2012) Organizational culture and the implementation of person-centred care: results from a change process in Swedish hospital care. Health Policy 108, 294–301. Altman DG (1991) Practical Statistics for Medical Research. Chapman & Hall, London. Anderson RM & Funnell MM (2010) Patient empowerment: myths and misconceptions. Patient Education and Counseling 79, 277–282. Aujoulat I, d0 Hoore W & Deccache A (2006) Patient empowerment in theory and practice: polysemy or cacophony? Patient Education and Counseling 66, 13–20. Boyde M, Tuckett A, Peters R, Thompson DR, Turner C & Stewart S (2009) Learning style and learning needs of heart failure patients (The Need2Know-HF patient study). European Journal of Cardiovascular Nursing 8, 316–322. Boyde M, Turner C, Thompson DR & Stewart S (2011) Educational interventions for patients with heart failure. A systematic review of randomized controlled trials. Journal of Cardiovascular Nursing 26, E27–E35. Chan ADF, Reid GJ, Farvolden P, Deane ML & Bisaillon S (2003) Learning needs of patients with congestive heart failure. Canadian Journal of Cardiology 19, 413–417. Clark JC & Lan VM (2004) Heart failure patient learning needs after hospital discharge. Applied Nursing Research 17, 150–157. Dickstein K, Cohen-Solal A, Filippatos G, McMurray JJV, Ponikowski P, PooleWilson PA, Str€ omberg A, van Veldhuisen DJ, Ater D, Hoes AW, Keren A, Mebazaa A, Nieminen M, Priori SG & Swedberg K (2008) ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2008 of the European Society of Cardiology. European Heart Journal 29, 2388–2442.
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Dudas K, Olsson LE, Wolf A, Swedberg K, Taft C, Schaufelberger M & Ekman I (2012) Uncertainty in illness among patients with chronic heart failure is less in person-centred care than in usual care. European Journal of Cardiovascular Nursing 12, 521–528. Ekman I, Schaufelberger M, Kjellgren KI, Swedberg K & Granger BB (2007) Standard medication information in not enough: poor concordance of patient and nurse perceptions. Journal of Advanced Nursing 60, 181– 186. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson I-L, Kjell€ en J, Olsson L-E, gren K, Liden E, Ohl Rosen H, Rydmark M & Stibrant Sunnerhagen K (2011) Person-centered care – ready for prime time. European Journal of Cardiovascular Nursing 10, 248–251. Ekman I, Wolf A, Olsson LE, Taft C, Dudas K, Schaufelberger M & Swedberg K (2012) Effects of person-centred care in patients with chronic heart failure: the PCC-HF study. European Heart Journal 33, 1112–1119. Fredericks S, Beanlands H, Spalding K & Da Silva M (2009) Effects of the characteristics of teaching on the outcomes of heart failure patient education interventions: a systematic review. European Journal of Cardiovascular Nursing 9, 30–37. Gagliese L, Weizblit N, Ellis W & Chan VWS (2005) The measurement of postoperative pain: a comparison of intensity scales in younger and older surgical patients. Pain 117, 412–420. Gonzalez B, Lup on J, Herreros J, Urrutia A, Altimir S, Coll R, Prats M & Valle V (2005) Patient0 s education by nurse: what we really do achieve? Journal of Cardiovascular Nursing 4, 107–111. Graneheim UH & Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and
measures to achieve trustworthiness. Nurse Education Today 24, 105–112. Johansson K, Salanter€ a S & Katajisto J (2007) Empowering orthopaedic patients through preadmission education: results from a clinical study. Patient Education and Counseling 66, 84–91. Kinnersley P, Edwards AGK, Hood K, Cadbury N, Ryan R, Prout H, Owen D, MacBeth F, Butow P & Butler C (2009) Interventions before consultations for helping patients address their information needs (Review). The Cochrane Library, issue 1. Leplege A, Gzil F, Cammeli M, Lefeve C, Pachoud B & Ville I (2007) Personcentredness: conceptual and historical perspectives. Disability and Rehabilitation 29, 1555–1565. McCormack B, Karlsson B, Dewing J & Lerdal A (2010) Exploring person-centredness: a qualitative meta-synthesis of four studies. Scandinavian Journal of Caring Sciences 24, 620–634. Pellino T, Tluczek A, Collins M, Trimborn S, Norwick H, Engleke ZK & Broad J (1998) Increasing self-efficacy through empowerment: preoperative education for orthopaedic patients. Orthopedic Nursing 17, 48–51. Sandelowski M (2000) Focus on research methods. Combining qualitative and quantitative sampling, data collection and analysis techniques in mixedmethod studies. Research in Nursing & Health 23, 246–255. Streiner DL & Norman GR (2008) Health Measurement Scales. A Practical Guide to Their Development and Use, 2nd edn. Oxford University Press, Oxford. Str€ omberg A (2002) Educating nurses and patients to manage heart failure. Journal of Cardiovascular Nursing 1, 33–40. Virtanen H, Leino-Kilpi H & Salanter€ a S (2007) Empowering discourse in patient education. Patient Education and Counseling 66, 140–146.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Evaluation of an intervention to individualise patient education at a nurse-led heart failure clinic: a mixed-method study Anita Ross, Ulla Ohlsson, Karin Blomberg and Margareta Gustafsson
Aims and objectives. The main aim of this study was to evaluate whether addressing the written questions of heart failure patients could individualise the education and increase patient satisfaction. A further aim was to describe the learning needs of patients with newly diagnosed heart failure. Background. Despite well-designed patient education, daily problems and self-care sometimes seem difficult to manage for the patient with heart failure. The literature suggested that nurses should include individualised educational interventions. Design. The study had an evaluative and descriptive design. Methods. A mixed-method approach was used. A quasi-experimental method was used to compare patients in the control group (n = 41), who received regular education at the nurse-led heart failure clinic, with patients in the intervention group (n = 44), who received regular education but also education addressing questions they had written down at home before coming to the clinic. Two instruments were used to investigate, respectively, whether the intervention caused patients to experience a greater sense of involvement in their education and greater satisfaction. The patients’ questions were subjected to manifest content analysis. Results. There was no significant difference in satisfaction with the education between the control group and the intervention group. However, the intervention group did feel more strongly that the information they received was related to their personal situation. The patients’ learning needs before education were categorised as: causes and meaning of illness, control and management of the disease, impact on daily living and future health. Conclusion. Asking heart failure patients to write down their learning needs before the education increases their chances of receiving education based on their individual needs. Relevance to clinical practice. The method is simple and cost-effective and could be a way to improve the patient education and facilitate person-centred care.
What does this paper contribute to the wider global clinical community?
• Asking patients with heart failure
•
•
to write down their learning needs in advance is a simple way to ensure that they receive individualised education based on their personal needs and related to their personal situation. The patients do not ask for education about all topics in the European Society of Cardiology (ESC) guidelines during their first education session. Therefore, education should be offered on further occasions. Nurses engaged in patient education should allow time for discussing with the particular patient any health-related problems he or she may wish to bring up.
Key words: empowerment, heart failure, nursing, patient education, person-centred care Accepted for publication: 9 November 2014
Authors: Anita Ross, RN, MSc, Lecturer, Department of Medicine, € Orebro University Hospital and School of Health and Medical Sci€ ences, Orebro University, Sweden; Ulla Ohlsson, PhD, RN, Senior € Lecturer, School of Health and Medical Sciences, Orebro University, Sweden; Karin Blomberg, PhD, RN, Associate Professor, € School of Health and Medical Sciences, Orebro University, Sweden;
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Margareta Gustafsson, PhD, RN, Associate Professor, School of € € Health and Medical Sciences, Orebro University, Orebro, Sweden Correspondence: Anita Ross, Lecturer, School of Health and € € Medical Sciences, Orebro University, SE–701 82 Orebro, Sweden. Telephone: +46 19 30 37 97. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602, doi: 10.1111/jocn.12760
Original article
Introduction Chronic heart failure (CHF) is a common syndrome among the older people in Europe, afflicting approximately 10–20% of the population in the age range 70–80 years (Dickstein et al. 2008). Self-care is an important part of CHF treatment. To this end patients need education about what CHF involves and about how to handle symptoms and drugs. In Sweden such education is often the responsibility of nurse-led heart failure clinics and follows the European Society of Cardiology (ESC) guidelines concerning CHF (Dickstein et al. 2008). Despite well-designed education, daily problems and self-care sometimes seem difficult to manage for the patient with heart failure (Gonzalez et al. 2005, Ekman et al. 2007, Dickstein et al. 2008). Further work is needed for the improvement of patient education and to make it person-centred.
Background Person-centred care is becoming more prominent in guiding principles for general health care (Leplege et al. 2007, McCormack et al. 2010, Ekman et al. 2011) as well as for the care of patients with heart failure (Dudas et al. 2012, Ekman et al. 2012). Person-centred care implies treating patients as individuals, respecting their rights, building mutual trust and understanding and developing therapeutic relationships (McCormack et al. 2010). It also implies the empowering of patients, giving them an active role in their care (Leplege et al. 2007, Alharbi et al. 2012). In traditional patient education, the patient has often been seen as a recipient of medical decisions and prescriptions. Empowerment-oriented education, on the other hand, is based more on individual needs, on the particular patient’s own life situation and priorities (Aujoulat et al. 2006). Systematic reviews of outcomes of heart failure patient education indicate that self-care improves if the content of the education is individualised, if a combination of media is used and if the education is delivered in more than one session and on a one-on-one basis (Fredericks et al. 2009, Boyde et al. 2011). A conclusion in the reviews was that nurses should include individualised educational interventions having first evaluated patients’ learning needs for improvement of the education A step in this direction, to obtain information about the patients’ learning needs to individualise the education, is for nurses to ask patients to list things they want information about before coming to the clinic. A Cochrane review of interventions to help patients express their learning needs during a medical consultation showed that such interventions usually resulted in © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Intervention for heart failure patient education
a small but nevertheless statistically significant increase in patient knowledge, patient participation and patient satisfaction (Kinnersley et al. 2009). The main aim of the present study was to evaluate whether addressing the written questions of heart failure patients could individualise the education and increase patient satisfaction. A further aim was to describe the learning needs of patients with newly diagnosed heart failure.
Methods Design, setting and sample selection A study with an evaluative and descriptive design was carried out at a Swedish university hospital between April 2008–October 2009. A mixed-method approach was used (Sandelowski 2000): a quasi-experimental method was used to evaluate the intervention and a qualitative method with content analysis was used to describe the patients’ learning needs. The setting, where the study took place, was a nurse-led heart failure clinic where nurses provide education, give the patients general check-ups and adjust medication in collaboration with the doctor. All patients with echocardiographyverified heart failure, who came to the clinic for the first time during the study period, were asked whether they were willing to participate in the study. Patients unable to communicate in Swedish were excluded. Patients in the control group received written information about the study at the visit to the clinic. After the education they were contacted by telephone, received oral information and were asked for informed consent. Patients in the intervention group were contacted by telephone before the visit to the clinic, received oral information and were asked for informed consent. Those who agreed to participate received written information about the study by mail and an invitation to write down personal questions they wanted answered during the education.
Procedure The patients in the control group received regular education from three experienced heart failure nurses at the clinic, all of whom followed the recommendations in the ESC guidelines. These guidelines cover such educational topics as definition and aetiology of heart failure, symptoms and signs of heart failure, pharmacological treatment, risk factor modification, diet recommendations, exercise recommendations, sexual activity, immunisation, sleep and breathing disorders, psychosocial aspects and prognosis (Dickstein et al. 2008). The education took place in an ordinary examination room
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and was delivered on a one-on-one basis, sometimes with the patient’s next of kin present. The patients in the intervention group were invited before the visit to the heart failure clinic to write down own questions they wanted answered. The invitation was worded as follows: ‘We are anxious that you should get the information you need about your health problem or illness. Write down the questions you want answered during your visit to the heart failure clinic’. At the clinic they handed the written questions to the nurse. They received regular education just like the control group, but also education addressing their written questions. The control group were included first in the study to avoid the risk of their education being influenced by the learning needs expressed by the patients in the intervention group. The education was delivered by the same personnel in both groups.
Data collection Data were collected by means of postal questionnaires sent to the patients within seven days after they had received education at the clinic. For analysis of baseline differences, the questionnaires collected data about characteristics such as age, sex, family situation and education. With use of data from medical records, patients’ state of health was investigated by means of the New York Heart Association (NYHA) classification (I–IV), which describes the severity of heart failure on the basis of the symptoms and exercise capacity. NYHA class I patients have no physical limitations or symptoms in connection with normal physical activity; NYHA class II patients have slight limitation of physical activity; NYHA class III patients have marked limitation of physical activity but are still comfortable at rest; and NYHA class IV patients are unable to carry on any physical activity without discomfort and have symptoms at rest (Dickstein et al. 2008). For evaluating the outcome of the intervention, instruments were used to investigate, respectively, whether the intervention caused patients to experience a greater sense of involvement in their education and greater satisfaction. The Empowerment Questionnaire (EQ) was used to ascertain whether the patients perceived themselves as being involved in the education and perceived it to be related to their own situation. The EQ is a self-rating scale with content based on definitions of empowerment found in the literature and reviewed by patient educators for content validity (Pellino et al. 1998). The scale has been used in earlier studies to evaluate empowerment models of education (Pellino et al.1998, Johansson et al. 2007). It contains ten statements reflecting key components of empowerment-oriented
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education: encouraging the patient to make choices about what to learn (2), actively involving the patient in the learning process (1), making information easy to understand (2), focusing on the patient’s concerns related to daily life (2) and creating a physically (1) and psychologically (2) comfortable learning environment. The response format is a five-point Likert scale ranging from 1 = strongly disagree to 5 = strongly agree. The items are summed and divided by ten for the calculation of the total empowerment score (1– 5). For the purposes of this study the EQ was rendered into Swedish by means of back-translation (Streiner & Norman 2008). Cronbach’s alpha was 097, showing that the translated version of the scale had a reliability similar to that of the original version used in previous studies (Pellino et al.1998, Johansson et al. 2007). The Numeric Rating Scale (NRS) was used to measure patients’ satisfaction with the education. The scale is generally used in clinical work to measure pain (Gagliese et al. 2005). It is a 10-point scale where 0, in this study, is ‘not at all satisfied’ and 10 is ‘very satisfied’. The patients were asked to circle the number which best represented their satisfaction with the education they had received. The NRS has been tested in psychometric analyses and is to be preferred to other intensity scales in the case of the elderly (Gagliese et al. 2005).
Data analyses Estimation of sample size for evaluation of the intervention, based on the results of a previous study using the same outcome measurement (Pellino et al.1998), suggested that 80 patients (40 in an intervention group and 40 in a control group) would be enough to detect a difference in ratings between the groups (power 085, alpha 005) (Altman 1991). For statistical analyses of baseline differences, we used the Chi-square test for category data and the independent t-test for continuous data. The Mann–Whitney U-test was used for analysis of differences between the groups regarding total empowerment scores and scores for satisfaction with the education. Correlation between experience of empowerment-oriented education and satisfaction with education was investigated by means of Spearman’s rank–order correlation. The significance level was set to 005. The patients’ own written questions were subjected to inductive manifest content analysis as described by Graneheim and Lundman (2004). First the questions from all of the patients were brought together and read over and over again to acquire a sense of the whole. Meaning units were identified corresponding to the aim of the study. The questions had a sufficiently condensed form as part of the process of being put into writing, so there was no need for © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Original article
further condensation. The next step in the analysis was the coding of the meaning units. The codes were then compared for differences and similarities and sorted into subcategories, which was followed by abstraction into final categories. The analysis was primarily carried out by the first author (AR). However, all the authors read the written questions and discussed the results to seek agreement during the analytical process. Quotations are used to illustrate the findings and increase the validity.
Ethical considerations The study followed the principles outlined in the Declaration of Helsinki. The patients received both written and oral information about the study before they gave their informed consent. In the information it was emphasised that participation was voluntary and could be terminated at any time during the study. The patients were also assured about confidentiality. Permission for the study was obtained from the Regional Ethical Review Board in Uppsala (www.epn.se) (reg. no. 2008/021).
Results
Intervention for heart failure patient education
Assessed for eligibility to the control group (n = 64)
Regular education
Enrolment (n = 64)
Declined participation (n = 4)
Follow up (n = 60) Lost to follow-up – did not return the questionnaires (n = 19) Analysed (n = 41)
Assessed for eligibility to the intervention group (n = 86)
Enrolment (n = 86)
Declined participation (n = 6)
Patient characteristics One hundred and fifty patients with heart failure were contacted and asked about participation. Ten patients declined participation. Of those 60 patients in the control group, who left informed consent, 19 did not return the questionnaire. In the intervention group, 36 out of 80 patients neither brought written questions to the education nor answered the questionnaire at home after the education. In the end, there were 41 patients in the control group and 44 patients in the intervention group (Fig. 1). The age-range was 31–89 years (mean age 70). More than 60% of the patients were men and more than 60% were married or living with a partner. The patients had a generally low level of education. Assessment of the severity of heart failure based on symptoms showed that most of the patients were NYHA class II and III (Table 1). According to the baseline analysis, there were no significant differences between the control and the intervention group with regard to age, sex, family situation, education and health status.
Experiences of empowerment-oriented education and satisfaction with education The patients’ ratings on the EQ were close to the maximum of the scale in both groups. The total scores were somewhat © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Regular education and education addressing personal learning needs
Follow up (n = 80) Lost to follow-up – did not return the questionnaires (n = 36) Analysed (n = 44)
Figure 1 Flow of participants through the study.
higher in the intervention group than in the control group but the difference was not significant (p 0066) (Table 2). However, analyses of differences between the groups regarding scores on each item on the scale revealed that patients in the intervention group more strongly agreed with the statement ‘We talked about how the information related to me and how I could fit it into my daily life’ (p 0027) and the statement ‘I received the information I wanted’ (p 0048). There was a high degree of satisfaction with the education in both the control group (md 9, q1 65, q3 10) and the intervention group (md 10, q1 80, q3 10)
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and the difference was not significant (p 0096). There was a significant correlation between perception of empowerment in the education and satisfaction with the education in both groups (rho 08 and rho 06 respectively p < 0001).
The patients’ learning needs The patients’ learning needs were expressed through the questions written by the patients in the intervention group. Forty-one out of 44 patients had formulated questions they wanted answered, with one patient having formulated no fewer than 19 questions. Some of their questions were very short, some were in the form of long stories about the patient’s present situation. Through the content analysis four categories of learning needs were identified: causes and meaning of illness, control and management of the disease, impact on daily living and future health (Table 3).
What have I got to think about and watch out for to do with my heart? (female, 85) I’ve never had any pain or pressure in my chest. What’s the sign if I get a heart attack? (male, 76)
The patients wanted to know what health-care resources were available. Who, for example, should they contact if they got worse or if they needed more medicine? Are you taking over the treatment completely, or will the healthcare centre be in touch? Can I get in touch with you if I need water tablets? (male, 41)
Patients submitted questions about how to manage to their medical treatment, and there were many questions about the effects and side-effects of drugs. There were also questions about alternative medical treatment, such as the insertion of a pacemaker: How often is there going to be follow-up of what tablets I’m taking? What about new ones? And what about side-effects? Do I
Causes and meaning of illness The possible causes and meaning of heart failure constituted a central question for many patients. There was a large variety of beliefs about possible causes expressed in the written questions:
need all the tablets? What about a pacemaker? (male, 62)
thing inherited? (male, 85)
Impact on daily living Sometimes patients submitted extensive stories about their daily living and how the disease had affected it. Their physical activity, which included both exercise and work, was a frequent topic in this category:
Have I got it from living the wrong way? (male, 71)
You sometimes wonder what you can do, physically, without putt-
What’s the cause of it? Stress? Exercising? Doing shift-work? Some-
I was frightened to death once. Has that affected my heart? (male, 85)
But the patients not only wanted to understand the cause of their heart failure but also to understand why they had specific symptoms: Why am I freezing around the clock? Why is my mouth so dry? Can my reflux symptoms with persistent seizures have something to do with it? (female, 77)
Understanding the meaning of heart failure included understanding one’s physical condition and the effect it had on their heart. How much of my heart is not functioning? (male, 79) What’s my heart’s pumping capacity now? (female, 56)
ing your heart at too much risk. You maybe don’t always realise you’re doing something you shouldn’t be doing. (male, 78)
Some questions had to do with nutrition, whether there was need for adjustment or change. Other questions had to do with such things as going to the dentist or cycling. Some of the patients’ questions were about continuing with hobbies that were of great concern to them. Is it all right for me to weave? It’s my favourite hobby. (female, 78)
The patients sometimes submitted narratives about their health situation and the impact of the symptoms on their life situation: Over the past year my physical condition’s got a lot worse. For quite some time I’ve been feeling a bit of pressure in the heart area but it’s gone away after I’ve rested for a while. A lot’s changed these last months. My balance is starting to get worse. I’ve seen how I’ve put
Control and management of the disease The patients had questions about how to have control and to manage their situation, what they should think of and what they should attend to.
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my foot down wrong without expecting it at all. With a wheeled walker it’s better. If I make any effort I get short of breath and get palpitations – if I walk too fast, say, or do vacuum-cleaning or lift up my arms too high. I have to walk very slowly. (male, 82)
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Original article
Intervention for heart failure patient education
Table 1 Demographics and health status of the intervention group (n = 44) and the control group (n = 41) at baseline
Variable
Total
Age, m (SD) 70 (SD 123) Sex, n (%) Male, 57 (67) Female 28 (33) Marital status, n (%) Single or widowed 32 (38) Married/living 53 (62) with partner Educational background, n (%) Nine-year 50 (59) compulsory school Upper secondary 20 (23) school Tertiary 15 (18) education NYHA classification, n (%) NYHA class I 3 (3) NYHA class II 38 (45) NYHA class III 43 (51) NYHA class IV 1 (1)
Intervention group
Control group
71 (SD 122)
68 (SD 124)
28 (64) 16 (36)
29 (71) 12 (29)
19 (43) 25 (57)
13 (32) 28 (68)
What sort of future is there for me when I’ve got heart failure? Will I have to take tablets for the rest of my life? Can I get back to 100%? (male, 41)
There were questions about whether they could contract other diseases related to heart failure and about how long their health could be maintained by means of medication. Can life be sustained as long as you like with tablets? Or other medicine? If it can, how long? Is it individual, maybe? (male, 87)
Discussion 24 (54)
26 (63)
10 (23)
10 (24)
10 (23)
5 (12)
0 19 24 1
(0) (43) (55) (2)
3 19 19 0
(8) (46) (46) (0)
Future health The patients wanted information about their future health. They wanted to know whether they were going to be better, stay as they were or get worse. They also had questions about their medical treatment in the future – for instance, whether they would have to take tablets for the rest of their life.
The patients in this study were referred to the nurse-led clinic after they had been diagnosed as having heart failure. They received traditional education from experienced heart failure nurses following ESC guidelines for this education (Dickstein et al. 2008) and the intervention group also received education addressing their learning needs written down before going to the clinic. The main finding was that patients in the intervention group felt more strongly that they had received the information they wanted and that it was related to their personal situation compared to the patients in the control group. The difference was significant. Thus, it would seem that asking the patients to write down their own questions to be answered during the education ensures that this education is tailored to the patient’s particular situation and needs. According to a review, individualised patient education is the most effective means for extending self-care knowledge and improving self-care behaviour (Fredericks et al. 2009). Taking the individual’s perspective into account in the education is consistent with
Table 2 Differences between the intervention group (n = 44) and the control group (n = 41) with regard to scoring of the items on the Empowerment Questionnaire Intervention group n = 44
Control group n = 41
Items on the empowerment questionnaire
Md
q1
q3
Md
q1
q3
p-Value
I felt I was actively involved in the learning I was able to make choices about the learning I received the information I wanted The information was easy to understand Medical terms were explained The learning was done in a comfortable place My point of view was respected I felt free to raise issues I felt comfortable discussing my concerns and fears We talked about how the information related to me and how I could fit it into my daily life Total empowerment score
5 5 5 5 5 5 5 5 5 5
4 325 4 4 3 4 4 5 5 4
5 5 5 5 5 5 5 5 5 5
5 4 5 5 5 4 5 5 5 4
35 3 35 35 4 3 4 4 4 3
5 5 5 5 5 5 5 5 5 5
0123 0203 0048 0216 0853 0134 0326 0381 0108 0027
48
41
5
46
36
49
0066
Md, the median; q1, the lower quartile; q3, the upper quartile.
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A Ross et al. Table 3 Sub-categories and categories illustrating the content analysis of the heart failure patients0 written questions Subcategory
Category
Cause of heart failure Meaning of heart failure Cause of symptoms and signs
Cause and meaning of illness
Self-care Medical treatment Alternative treatment Care-giver contact
Control and management of the disease
Impact on activity Impact on lifestyle Impact of symptoms and signs Threat to health Prognosis
Impact of daily living
Future health
the fundamental principle in person-centred care to not reduce the person to a patient (Leplege et al. 2007, McCormack et al. 2010, Ekman et al. 2011). Using the method tested in this study could be a way to make the patient education more person-centred, which could have several benefits for the patient with heart failure. Person-centred care has been implemented to some extent in the care of patients with chronic heart failure in Sweden and has shown positive outcomes such as shorter stay in hospital with maintaining health-related quality of life (Ekman et al. 2012) and reduced uncertainty in illness (Dudas et al. 2012). In the ESC guidelines (2008) it is emphasised that teaching should focus on adherence to treatment and self-care management (Dickstein et al. 2008). Earlier studies have also shown that heart failure patients perceive educational topics in the guidelines as important (Chan et al. 2003, Clark & Lan 2004, Boyde et al. 2009). In this study, the analysis of the content of the patients’ written questions confirmed that teaching should include information listed in the guidelines, i.e. information on the aetiology of heart failure, pharmacological treatment, exercise and prognosis. On the other hand neither diet nor sexual activity received much mention in the patients’ questions. Thus, during the first educational session the patients did not seem to direct their attention to all possible topics. This is consistent with the suggestion that the education should be spread over more than one session (Fredericks et al. 2009). It is also worth noting, that the patients not only wanted information about issues related to heart failure but also about causes of illness in general. Unexpectedly, patients sometimes handed in extensive narratives about different kinds of problems in everyday life deriving from their illness. Thus, there were certain patients who evidently had a need to share their knowledge about
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living with CHF and the limitations that it meant for them. This indicates a desire to be seen as a person and not just a patient with newly diagnosed heart failure. Written extensive narratives might also indicate a need for the patients to have their challenging situation confirmed. Here, the nurse is of great importance. It is important that nurses acknowledge and show respect to the patient as an individual. Confirmatory communication is a key factor with regard to empowering the patient (Aujoulat et al. 2006, Virtanen et al. 2007), and empowerment of the patient is at the heart of person-centred care (Leplege et al. 2007, Alharbi et al. 2012). Asking the patients to write down their learning needs before the education represents a simple and cost-effective method that could be used in all patient education. Nevertheless, it may be questioned whether it is a useful method for all patients. Many patients in this study did not take the opportunity to write down questions and have them answered by the nurses. A limitation of this study was that the reasons for not bringing questions were not clarified. Possible explanations are that the patients belonged to the older generation not accustomed to participating in care, or that they had not yet acquired insight into the problems associated with their disease, or simply had problems formulating questions in writing. No matter what the explanation was, it did not necessarily imply that the patients had no questions. When using this method, it is important that nurses give the patients opportunity to orally communicate their learning needs. The patients in the control group reported high levels of empowerment in connection with the education. This was unexpected, as traditional compliance-oriented education and individualised empowerment-oriented education are often seen as representing two totally different approaches (Aujoulat et al. 2006, Anderson & Funnell 2010). A possible explanation is that the nurses had been influenced by the results of earlier Swedish studies showing that education should to a larger extent be based on patients’ individual information needs (Str€ omberg 2002, Ekman et al. 2007). Using an empowerment-oriented approach in patient education does not mean disregarding the ESC guidelines. Health-care professionals using such an approach are still responsible for seeing that the patients get adequate information enabling them to make thoughtful decisions about their own care (Anderson & Funnell 2010). This is also in agreement with the principle of partnership in person-centred care (McCormack et al. 2010, Ekman et al. 2011). Some limitations of the study must be taken into consideration. When a power-analysis was done in the planning phase, we estimated a lower level of empowerment and sat© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Original article
isfaction with education in the control group. The expected difference turned out to be overestimated. Further research should consider the inclusion of more patients in the sample. Using another instrument than EQ should also be considered, as the ratings were close to the ceiling of the scale in both groups. A more sensitive scale would perhaps have shown bigger differences between the groups. The EQ is poorly tested and the constructors of the scale have only given information about content validity (Pellino et al. 1998). The EQ has been criticised for evaluating the general satisfaction rather than the empowerment process (Aujoulat et al. 2006). With regard to some of the items (e.g. ‘The information was easy to understand’) we would agree, but other items (e.g. ‘I felt I was actively involved in the learning’ and ‘I was able to make choices about learning’) would seem to be well in accord with the empowerment process. In any case, the translated scale needs to undergo psychometric testing before use in further research. In a study employing an experimental method, a random allocation of patients is preferable with more control of sample selection bias. However, in experimental design it is even more important that the intervention is not given to the control group. Therefore, we included the control group first to be confident that the nurses delivered regular education to the control group in the usual way. The fact that attrition was greater in the intervention group compared to the control group also increased the risk of unequal groups. However, statistical analysis of baseline data did not show any differences between the groups. Concerning intervention bias, the education followed the ESC guidelines in both groups. There seemed to be no need for briefing before the education as all three nurses had long experience of education in the nurse-led heart failure clinic. The patients were free to ask questions in both groups, and the only difference between them was that the patients in the intervention group had prepared questions at home. The nurses did not document the timing of sessions in the groups. The exact timing of sessions is difficult to measure because the education is often integrated with other activities, e.g. adjustments of medication. A content analysis was used to investigate the patients’ written questions. Sometimes the questions were short, sometimes they took the form of extensive narratives – but the overall content was varied and richer than expected. Credibility is a question of how to judge the similarities within and differences between categories. To achieve credibility, we together discussed each step in the analytical process. Also, a table illustrating sub-categories underpinning each category was used to facilitate judging the credibility of the findings (Graneheim & Lundman 2004). The mixed© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1594–1602
Intervention for heart failure patient education
method approach was effective in providing complementary knowledge about the topic in question.
Conclusion The results of the study showed that asking patients with heart failure to write down their learning needs before the education increased their chances of receiving individualised education, i.e. the education that they wanted and that was related to their own daily life. Thus, the evaluated educational method is useful for nurses who in the patient education want to have a person-centred approach to the patient. The analysis of the patients’ learning needs revealed that they had a need to talk about the impact of the disease on their daily life. Nurses should allow time during the patient education for the patients to discuss daily issues related to their health situation.
Relevance to clinical practice Encouraging patients to write down their own questions before the education can be easily done by means of a few words in the invitation preceding attendance at the clinic. The method is simple and cost-effective and could be used in all patient education to make the education more individualised. Nurses should consider what topics in the ECS guidelines to discuss during the first education session and be sure to have enough time for discussing the patients’ experiences of issues in their daily life related to their health situation. Further research is needed, not only concerning this method but also concerning other methods for the improvement of patient education. Randomised controlled trials investigating different interventions to improve education, with follow-ups of outcomes, would give useful knowledge to nurses providing education for patients.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conflict of interest The authors have no conflict of interest to declare.
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References Alharbi TSJ, Ekman I, Olsson LE, Dudas K & Carlstr€ om E (2012) Organizational culture and the implementation of person-centred care: results from a change process in Swedish hospital care. Health Policy 108, 294–301. Altman DG (1991) Practical Statistics for Medical Research. Chapman & Hall, London. Anderson RM & Funnell MM (2010) Patient empowerment: myths and misconceptions. Patient Education and Counseling 79, 277–282. Aujoulat I, d0 Hoore W & Deccache A (2006) Patient empowerment in theory and practice: polysemy or cacophony? Patient Education and Counseling 66, 13–20. Boyde M, Tuckett A, Peters R, Thompson DR, Turner C & Stewart S (2009) Learning style and learning needs of heart failure patients (The Need2Know-HF patient study). European Journal of Cardiovascular Nursing 8, 316–322. Boyde M, Turner C, Thompson DR & Stewart S (2011) Educational interventions for patients with heart failure. A systematic review of randomized controlled trials. Journal of Cardiovascular Nursing 26, E27–E35. Chan ADF, Reid GJ, Farvolden P, Deane ML & Bisaillon S (2003) Learning needs of patients with congestive heart failure. Canadian Journal of Cardiology 19, 413–417. Clark JC & Lan VM (2004) Heart failure patient learning needs after hospital discharge. Applied Nursing Research 17, 150–157. Dickstein K, Cohen-Solal A, Filippatos G, McMurray JJV, Ponikowski P, PooleWilson PA, Str€ omberg A, van Veldhuisen DJ, Ater D, Hoes AW, Keren A, Mebazaa A, Nieminen M, Priori SG & Swedberg K (2008) ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2008 of the European Society of Cardiology. European Heart Journal 29, 2388–2442.
1602
Dudas K, Olsson LE, Wolf A, Swedberg K, Taft C, Schaufelberger M & Ekman I (2012) Uncertainty in illness among patients with chronic heart failure is less in person-centred care than in usual care. European Journal of Cardiovascular Nursing 12, 521–528. Ekman I, Schaufelberger M, Kjellgren KI, Swedberg K & Granger BB (2007) Standard medication information in not enough: poor concordance of patient and nurse perceptions. Journal of Advanced Nursing 60, 181– 186. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, Carlsson J, Dahlin-Ivanoff S, Johansson I-L, Kjell€ en J, Olsson L-E, gren K, Liden E, Ohl Rosen H, Rydmark M & Stibrant Sunnerhagen K (2011) Person-centered care – ready for prime time. European Journal of Cardiovascular Nursing 10, 248–251. Ekman I, Wolf A, Olsson LE, Taft C, Dudas K, Schaufelberger M & Swedberg K (2012) Effects of person-centred care in patients with chronic heart failure: the PCC-HF study. European Heart Journal 33, 1112–1119. Fredericks S, Beanlands H, Spalding K & Da Silva M (2009) Effects of the characteristics of teaching on the outcomes of heart failure patient education interventions: a systematic review. European Journal of Cardiovascular Nursing 9, 30–37. Gagliese L, Weizblit N, Ellis W & Chan VWS (2005) The measurement of postoperative pain: a comparison of intensity scales in younger and older surgical patients. Pain 117, 412–420. Gonzalez B, Lup on J, Herreros J, Urrutia A, Altimir S, Coll R, Prats M & Valle V (2005) Patient0 s education by nurse: what we really do achieve? Journal of Cardiovascular Nursing 4, 107–111. Graneheim UH & Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and
measures to achieve trustworthiness. Nurse Education Today 24, 105–112. Johansson K, Salanter€ a S & Katajisto J (2007) Empowering orthopaedic patients through preadmission education: results from a clinical study. Patient Education and Counseling 66, 84–91. Kinnersley P, Edwards AGK, Hood K, Cadbury N, Ryan R, Prout H, Owen D, MacBeth F, Butow P & Butler C (2009) Interventions before consultations for helping patients address their information needs (Review). The Cochrane Library, issue 1. Leplege A, Gzil F, Cammeli M, Lefeve C, Pachoud B & Ville I (2007) Personcentredness: conceptual and historical perspectives. Disability and Rehabilitation 29, 1555–1565. McCormack B, Karlsson B, Dewing J & Lerdal A (2010) Exploring person-centredness: a qualitative meta-synthesis of four studies. Scandinavian Journal of Caring Sciences 24, 620–634. Pellino T, Tluczek A, Collins M, Trimborn S, Norwick H, Engleke ZK & Broad J (1998) Increasing self-efficacy through empowerment: preoperative education for orthopaedic patients. Orthopedic Nursing 17, 48–51. Sandelowski M (2000) Focus on research methods. Combining qualitative and quantitative sampling, data collection and analysis techniques in mixedmethod studies. Research in Nursing & Health 23, 246–255. Streiner DL & Norman GR (2008) Health Measurement Scales. A Practical Guide to Their Development and Use, 2nd edn. Oxford University Press, Oxford. Str€ omberg A (2002) Educating nurses and patients to manage heart failure. Journal of Cardiovascular Nursing 1, 33–40. Virtanen H, Leino-Kilpi H & Salanter€ a S (2007) Empowering discourse in patient education. Patient Education and Counseling 66, 140–146.
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