CLARK,A.,FREYDBURG, C., McALISTER , F., TSUYSUKI R., ARMSTRONG, P. and STRAIN,L. ( 2009) Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient for effective self-care, European Journal of Heart Failure, 11, pages 617-621
Introduction
Mr A. was admitted to hospital a the request of his general practitioner with chronic congestive heart failure, from which he has suffered for two years. The admission was because the condition was deteriorating rapidly and it was found that Mr A was not taking his medication on a regular basis.
He is a 67 year old male, married with a grown up family who no longer live at home.. He retired three year s ago from his rather sedentary life as a bank employee, but had hoped that in his retirement he would find time to take up a more active lifestyle. At first he took up cycling and joined a cycling club and tried to start a vegetable garden , but is no longer able to participate in either of these activities. He has no other major medical problems and in earlier life only had the usual childhood illnesses and required an appendicectomy when aged 18. Mr A was chosen for this study because I got to know him quite well, he was willing to be interviewed and I was also able to meet his wider family.
The Issue to be Considered
Mr A needs the support of his wife in order to manage his condition at optimum level. However his wife is a very busy lady, working full time and with lots of full time interests. Also she finds her husband’s condition and the implications for their future lives together worrying . She also finds hospitals rather frightening and has had bad experiences in the past. Her own father died of congestive heart failure after a long illness in which his abilities deteriorated until he was totally housebound and reliant upon continuous oxygen therapy. She therefore finds the whole situation rather frightening, so she is anxious and does not concentrate when health care staff try to explain matters to her. She also felt that it was up to health care staff rather than her to make decisions such as altering the dosage of any medication , and did not relish such a responsibility. Because she is out during the day Mr A has to cope on his own for most of the day.
Congestive heart failure
Heart failure is an unexact diagnosis used as an umbrella term to cover a number of possbibliites, often being used in the early stages before a more accurate diagnosis is arrived at.. It can be very mild i.e where ordinary physical activity does not result in breathlessness, tiredness, or noticable palpitations. Only on testing will mild heart failure be diagnosed. The next stage would be where, while the patient is comfortable when resting, symptoms are soon noted if there is any great exertion. A somewhat worse condition means that , although there is still comfort when resting, even slight exertion such as getting dressed , can bring on breathlessness and other symptoms. This degree of incapacity is classed as moderate. In severe cases symptoms persist even when the patient is inactive. Mr A’s condition was assessed as being moderate congestive heart failure, but had now become more severe. .
The symptoms are caused when the cardiac output becomes reduced and so the amount of blood being pumped around the body is reduced. The condition may affect only one side of the heart i.e. right or left sided heart failure, but in Mr A’s case both sides are affected. This means that not only are his heart muscles stiff and not capable of taking in blood from the vena cava in an efficient way, but also that the heart is failing to eject blood adequately. The result is that when more than even the most modest exercise is taken the oxygen required by the body is not available to the cells in sufficient quantities. As the heart’s pumping ability gradually becomes more inefficient, blood may begin back up in the venous system, which then brings about a build up of fluid in places such as the liver, the lungs, the gastrointestinal tract, and in the limbs. There is a resulting lack of both oxygen and necessary nutrition to the organs, and means they cannot work as they ought.
In Mr A’s case the following symptoms are experienced. Firstly he experienced an obvious shortness of breath on exertion. At first he only experienced this after exercise, but the disease has progressed and now there is some degree of breathlessness all the time, as well as slight blueness of the lips. He is also gaining weight and has swollen feet and ankles, tires very easily and notes that his appetite has decreased. He experiences palpitations and is sleeping poorly, disturbing his wife when at home, especially has he has to get up to urinate several times each night.
On examination he was found to have a degree of pleural effusion, a somewhat irregular heart beat, .pitting oedema of the lower legs and a swollen liver. His throat veins are obviously engorged and his heart sounds were abnormal. Further tests also revealed coronary artery disease, i.e. the blood vessels which supply the heart were narrowed. He is now awaiting surgery for a heart by pass.
Major care priorities
According to Clark et al ( 2009):-
Appropriate pharmacological, device, and behavioural management
can improve life quality, expectancy, and morbidity in people with
heart failure .
At the same time the researchers concluded that knowledge of heart failure and its management is required by both patient and carer, although it may not sufficiently determine the course of heart failure in an individual. They state that there are both ‘ Individual and contextual factors ‘ which influence both a willingness and the ability to effectively undertake self-care in a case of congestive heart failure. .
Roper, Logan and Tierney ( 1980) describe how nursing care should be based upon a model of living i.e. it is not just about reducing the symptoms of congestive heart failure, but also to maintaining life at the best possible level ,. This will include such things as breathing, eating and drinking, sleeping, work and play. Any care plan should therefore include the patient’s abilities in these and other ‘activities of daily living’.
Priority would therefore be centred upon careful monitoring of the condition in order to check whether it is progressing further or responding to treatment. The patient needs to learn how to self monitor and so be involved in managing his condition. One way he can to do this is to weigh himself on a daily basis on the same scales, as part of a daily routine. Mr A must understand that this is best done at the same time and wearing as few clothes as possible. Home blood pressure machines are available and the results can be downloaded to their physician using a phone line. Often such patients have problems with concentration, and so need support from carers. In Mr A’s case his wife should be made aware of his condition and what she can do to help. This would include such things as reminding him to take medication, fetching prescriptions, ensuring he follows any suggested dietary guidelines etc. She is more likely to do this in the best way if she understands the condition and its implications.
The article to be critiqued
‘Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient
for effective self-care’,
Alexander M. Clark1, C. Nicole Freydberg1, Finlay A. McAlister 2, Ross T. Tsuyuki, Paul W. Armstrong, and Laurel A. Strain, 2009, European Journal of Heart Failure.
With any article about medical research it is necessary to discover whether the authors present a convincing case that has implication for clinical practice and in this case they do so, presenting evidence of what patients and their carers understand about heart failure and which areas need more emphasis and teaching. Pope and Gilbert ( 2009) describe such research as ‘Patient-Oriented Evidence that Matters’. The British Medical Association (1997) has produced a number of articles upon the topic of reading medical research papers and describe qualitative research such as this as ‘Papers that go beyond numbers.’ They describe qualitative research as being concerned , as this is, with the aim ‘to make sense of, or interpret, phenomena in terms of the meanings people bring to them.’
This article was well and clearly presented, but includes some terms that could perhaps require more explanation for the general reader, although it was of course written for those health care professionals who specialize in patients with hearty failure of various types. What for instance are ‘discrete stage’ or ‘qualitative analysis’?
The references given were extensive so that readers are able to check facts and to widen their reading on the subject.
The subject is important because of the large numbers of such patients living at home with a carer. According to ‘Patient Care Co’ there are some 68,000 new cases of people diagnosed with heart failure within the United Kingdom annually. It is a condition which becomes more common as age increases and affects roundabout 1 in 15 of people between the ages of 75-84 and incidence increases to more than 1 in 7 people who are aged 85 and over.
The method used was qualiative i.e. the researchers were trying to discover the quality of life experienced by the patients concerned. This method was chosen because it was felt that there was a comparative absence of earlier research into how context influenced heart failure, and included in this were the relationships between knowledge of the condition by both patients and carers an dhow these interacted with other factors. This was done by using semi-structured interviews. The advantage of this method is that it could be done be telephone once initial contacts had been made. The disadvantages would be translating these conversations into firm, easily measurable data.
Participants were chosen from among living in the region of Edmonton, Canada, who spoke English, had a functionality of Class II or III as described by the New York Heart Association, and who had been hospitalized in the previous year and a half, and who did not have access in their home area to a specialist heart failure management programme. These people therefore fitted well into the aims of the study. Mr A , when first hospitalized, fitted into Class III, although, he was moving into Class IV as time progressed .
Ethical considerations were that this study was undertaken with the full consent of the people concerned. After having the study explained to them by a physician, they agreed to researchers having the relevant medical records made available as needed. The participants were also asked to invite, and so nominate, a caregiver who, on a regular basis, helped them to manage their condition. However the final sample was relatively small with 42 participants and only 30 caregivers. There is no reason given for this discrepancy between numbers. Because the data collected was done by both initial face to face interview and then followed up telephone, all participants were familiar with each other and would presumably be relaxed in their own home environment and therefore more likely to give full and honest answers. If researchers had traveled back and forth to each home for this extended series of interviews would be expensive in both time and money. If patients were required to attend some medical centre for the interviews this would have placed physical , and possibly psychological stress, upon them. However it did mean that researchers were reliant upon the patient or their carer’s perception, rather than any observations of their own. It seems to be an adequate compromise.
This was a qualitative study which relied upon perceptions, rather than measured empirical evidence. The results are presented anonymously so breach no ethical considerations, even though direct quotations are used. Measurable data was minimal i.e. age of participants, sex and number of carers at each site
The results were useful in that it was discovered relatively easily which parts of care those involved prioritized. For instance weight management and alcohol restriction were ‘seldom reported’ and only one person felt the need to mention any necessary fluid and weight monitoring were mentioned by only one person. This means that future education of patients with heart failure can be rethought and aligned better with an emphasis on factors which health care staff felt to be important, but which were being minimized by participants. It was found for instance that :-
Even in the presence of severe and disruptive symptoms, patients
and caregivers consistently demonstrated poor knowledge of the
nature and causes of HF, its pharmacological and behavioural management,
its worsening trajectory, and links to death.
It was also found that there was often considerable time elapsing between the patient noticing symptoms and his taking any steps to deal with it, either by consulting a physician or adjusting his behaviour or medication. It was found that symptoms, which to a health professional would immediately be attributed to heart disease, were often attributed by patients and carers as being due to some other cause. Things such as old age, a cold or flu, smoking, or alcohol consumption are cited. It is therefore obvious that more education is required if patients such as these are to remain at optimum activity levels for as long as possible. The results include the actual words of some of those participating, which makes the results very believable. There is some generalization , because these patients tend to give similar answers. There are after all similarities of age and background as well as a shared experience of ill health.
Implications for Practice
On analyzing the results of this research it was discovered that some of the findings fitted in with what was actually happening in the case of Mr A and his wife in that they were not prepared to follow any suggested regimes with any exactitude and regularity , and Mr A would not inform his physician of his deteriorating condition, but it was only discovered when he had to visit his doctor because of a leg injury. This suggests that the public need to be educated as to which symptoms should be referred to a health professional in order to prevent a condition worsening unnecessarily. Also there needs to be specific information made available to those who have already been diagnosed with the condition. As well as NHS facilities, as congestive heart failure is so strongly linked to advancing age, organizations such as Age UK should themselves consider producing information for the older population. Health care staff need to be aware that patients and carers tend to place little emphasis on such things as weight control, alcohol consumption restrictions, as well as the monitoring of fluids consumed.
These were results from patients self monitoring in their own home, so are particularly of relevance to those working with such people including the staff of local health centres , but of course these patients do come into hospital, even if only for tests or as out patients. Education needs to be undertaken wherever they are. When a patient is discharged from hospital, the staff on the ward need to ensure that details are passed on to relevant staff in the community. Before discharge though the patient should be linked up with ancillary staff such as occupational health workers, so that such things as toilet facilities at home can be adapted to minimize the effort required. Perhaps a chair lift needs to be installed or a chair with a lift in the seat is required. All of this can take time. Staff also need to ensure that the patient understands any medication prescribed, when and how it should be taken, and its importance. Such things as daily weighing should be part of his routine and he should be told that this needs to continue at home. If heart recordings or blood pressure readings are to be taken by phone, then this needs careful explaining and setting up. The patient and his carer need to have confidence in the information they are given or they are unlikely to adhere to any advice given or regimes prescribed. Such applies whatever the particular circumstances, individual needs or the severity of the person’s condition. The people in Canada live in a widely scattered area, but as the research was in the main conducted by telephone this made no difference.
In my own area findings such as these would have meant a necessary reappraisal of the education patients receive in hospital. More than simply handing out leaflets, however informative, is needed. It is obvious from the research that carers have particular worries such as the amount of responsibility they feel is being imposed on them. Carers obviously need more support than is at present available. Could a support group be set up, or carers linked up to an already established local group? In view of the large numbers involved it should be possible to have groups meeting in fairly localized areas so as to be readily accessible. At these carers and patients would be able to voice their concerns as the participants did during the period of the research. Health authority staff would also be able to answer questions, make suggestions, and perhaps even monitor patients. Peers would also be able to tell how they were coping with particular things such as the need to access transport or get some changes made to their home. If all patients with congestive heart failure in an area had clinic appointments at similar times, perhaps all on one afternoon, this would make education session easier.
This piece of research was useful because it showed the degree of the problem of such things as the seemingly innate tendency to delay getting required help. This the researchers put down to several reasons such as taking pride in managing for as long as possible without professional health care intervention. Perhaps surprisingly to me a belief that the condition and the symptoms involved were not something to be controlled but would naturally take their own course was found to be prevalent. This is not an attitude found often among medical practitioners or other health care professionals. .
The report however offers no solutions or even suggestions as to changes need in present practices.
Discussion
The implications of this research are that patients could maintain their health at a more optimum level if they and their more fully understood the nature of their particular condition. They would need to understand the reasons for the prescription of particular medications as well as other measures suggested. It is therefore necessary for staff to re-evaluate the way in which patients are told about their condition and also the content which needs to be included. This will involve discussion, perhaps rewriting patient information leaflets. Also looked at should be the involvement of carers in any teaching sessions. Staff should be aware that these people need time to discuss their own feelings and fears and the implication of the condition for their particular circumstances. A time table should be set up by an agreed co-coordinator as to when and how particular tasks should be undertaken and by whom. Patients could be interviewed in order to discover what their understanding is. It is no good just giving patients leaflets, but education needs to be individualized to some extent and staff needs to be aware of this. There are financial implications – staff time taken , the cost of producing educational materials etc, but this would be offset by the fact that patients who are managing their condition at an optimum level will need less medical intervention and less time in hospital as well as having a better quality of life and placing less stress on any carers.
Conclusion
Articles such as this can be helpful in that it reveals needs that ought to be met, in this case with concern towards heart failure patients and their home carers. However, although it shows what is going wrong, there is actually nothing which points the way forward towards change and improvement. The fact that it is a qualitative report , rather than a quantitative one means that there are no actual statistics to present to managers etc in order to obtain funding for any changes considered necessary. So it is useful as a starting point, but the rest is up to the rest is up to the readers.
References
CLARK,A.,FREYDBURG, C., McALISTER , F., TSUYSUKI R., ARMSTRONG, P. and STRAIN,L. ( 2009) Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient for effective self-care, European Journal of Heart Failure, 11, pages 617-621
Heart Failure, Patient co-uk,
GILBERT,G. and POPE, C., ( January 2010) , A Brief Introduction to Evaluating the Literature, Journal of National Medical Association, 102, number 1, page 67, available from http://www.nmanet.org/images/uploads/Publications/ED65.pdf ( accessed 2nd May 2011)
HEART FAILURE, ( 2009) Patient Co-Uk , Available from http://www.nmanet.org/images/uploads/Publications/ED65.pdf http://www.patient.co.uk/health/Heart-Failure.htm ( accessed 2nd April 2011)
NEW YORK HEART ASSOCIATION FUNCTIONAL CLASSIFICATION IN A PATIENT WITH HEART DISEASE., ( Undated) available from https://www.cebp.nl/media/m149.pdf ( accessed 2nd May 2011)
ROPER, N.,LOGAN ,W. and TIERNEY,A. ( 1980) The Elements of Nursing , a model for nursing based on a model for living, Edinburgh, Churchill Livingstone.
THE BRITSIH MEDICAL ASSOCIATION, ( September 20th 1997), How to read a paper: Papers that go beyond numbers (qualitative research), available from http://healtoronto.com/howto10.html#16 ( accessed 2nd May 2011)