What influences a patient's desire to participate in the management of their hypertension?

Patient Education and Counseling 38 (1999) 185–194www.elsevier.com/ locate /pateducou

What influences a patient’s desire to participate in the managementof their hypertension?

*Jane Sims

Division of General Practice and Primary Care, St. George’s Hospital Medical School, Cranmer Terrace, London SW17 0RE, UK

Received 31 May 1998; received in revised form 30 August 1998; accepted 22 September 1998

Abstract

There are potential benefits to giving the patient a more active role in the management of his or her care. This studyexplored the characteristics which influence a preference for participation and the extent to which hypertensive patients wishto participate in the management of their condition. A cross-sectional study with in-depth, face-to-face interviews wasconducted with 49 hypertensive patients from one health centre. Interview themes were identified using content analysis.Characteristics predictive of participation desire were detected via quantitative analyses. Half of those interviewed wereinterested in participating in hypertension management. Those who had been hypertensive longer were less inclined to favourparticipation. Those with negative views of their ‘disease’ status and with higher blood pressure were more likely to want toparticipate. Patients needed further information and advice before decisions about future level of participation could beproperly considered. 1999 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Patient participation; Disease management; Hypertension

1. Introduction by the British government via initiatives such as thePatients’ Charter [3]. Social change has led to

Patient participation has been described as ‘the increased consumerism, allied to which has been aprocess whereby a person can function on his or her call for more active patient involvement in healthown behalf in the maintenance and promotion of care [4]. The concept of patient participation ishealth, the prevention of disease, the detection, derived from patient autonomy, which encompassestreatment and care of illness and adaptation to decision-making and control. Health professionalscontinuing disability’ [1]. The concept of patient have begun to move from a paternalistic approach toparticipation was embodied in the Alma-Ata Decla- patient management towards an acknowledgement ofration [2] and has been promulgated more recently the patient’s right for self-determination.

The form participation should take and the extent* to which patients wish to participate in their healthTel.: 144-181-7250056; fax: 144-181-7677697.E-mail address: [email protected] (J. Sims) care have been the subjects of many papers [5].

0738-3991/99/$ – see front matter 1999 Elsevier Science Ireland Ltd. All rights reserved.PI I : S0738-3991( 98 )00126-8

186 J. Sims / Patient Education and Counseling 38 (1999) 185 –194

There is a continuum from passive compliance with promoting compliance and a healthy lifestyle. Thistreatment regimes to choosing to be closely involved report outlines a preliminary study. An inductivein the management of one’s condition, working in process was used to gain background information,co-operation with the health professional [6]. Steele prior to proceeding with an intervention to test theet al. [7] characterise the active patient as someone above hypothesis. The purpose was to determinewho asks questions, seeks explanations, states prefer- how hypertensive patients perceive their role in theences, offers opinions and expects to be heard. management of their condition and to assess theirSehnert and Eisenberg [8] suggest that some patients desire for future participation in BP management. Itcan be ‘activated’ to ask questions, be aware of was hypothesised a priori that those wishing tobodily symptoms and adapt behaviour accordingly participate would be more likely to:and to present concerns to the doctor. In relation tohypertensive patients, active participation would • Have more negative feelings about their BP statusentail not only taking prescribed medication, but also • Report BP status having an impact on their dailymaking healthy lifestyle changes, for example in diet livesand physical activity. • Have experienced more symptoms or illness as a

The increasing number of chronically ill people in result of treatmentour population has perhaps served as an impetus for • Think about their BP status morethe promotion of greater patient participation in • Actively comply with medication regimehealth care [5]. Chronic conditions such as hyperten- • Report more self management activitiession lend themselves to mutual management strate-gies. The patient can provide important informationto aid management. This seems appropriate since, 2. Methodonce on medication, the hypertensive patient willlargely manage himself. The patient will naturally The setting was a three-partner practice within achoose the regime that best fits his lifestyle [9]. The health centre in Surrey, England. The practice ishealth professional’s role will be to help the patient situated in a relatively affluent area of the commuterhelp himself [10]. Research with hypertensives has belt. The practice has approximately 5000 patients,tended to focus on compliance rather than exploring of whom 469 have a Read code for hypertension onoffering patients the option of participation in their the practice computer. Of these, about 300 attend ahealth care via making lifestyle changes. However, practice nurse-led BP clinic. The clinic has been infor some hypertensives, allowing the patient a more operation since 1993. There is a protocol for theactive part in the management of his condition, management of hypertension and for the BP clinicbeyond simply taking antihypertensive medication, itself. Quarterly attendance is recommended, plus amay facilitate compliance and improve blood pres- comprehensive annual check.sure (BP) control [11]. The perception that one hasbeen able to choose to take a more active role may in 2.1. Participantsitself enhance the patient’s overall sense of well-being [12]. Ethical approval was obtained from the local

To date, patient participation studies have largely research ethics committee. The researcher requestedaddressed secondary care issues, such as shared the assistance of patients with diagnosed and treateddecision-making about surgical intervention for hypertension. Patients were identified from clinic andbenign prostatic hypertrophy [13]. Participation is computer records. Patients considered by the GP toequally important in primary care situations. The have reasonably controlled BP and who were moni-current research considered the role of patient par- tored regularly at the practice were subsequentlyticipation in the management of hypertension. The recruited to the study via a letter signed by the leadguiding premise was that giving patients the choice GP. On receiving written consent, an appointmentto become involved in the management of their was made for the patient to attend for interview.hypertension could help to improve BP control by Where possible, this coincided with a visit for a

J. Sims / Patient Education and Counseling 38 (1999) 185 –194 187

3-monthly (or annual) BP check. Between January who did not on a number of characteristics. Groupand July 1997, 102 letters were mailed and 49 differences were assessed using independent t-tests,

2interviews subsequently conducted. Two people con- x or Fisher’s Exact tests as appropriate. Given thesented to be interviewed but an appointment could small sample size, multiple regression analysis wasnot be arranged and one patient did not attend for not feasible. The data is presented unadjusted forinterview (51% response rate). Because all inter- multiple testing. Associations between patientviews were scheduled during working hours, the characteristics were analysed using parametric orresponse rate may be artificially low. non-parametric correlation tests.

2.2. Design3. Results

A cross-sectional survey involving individual, faceto face interviews was conducted. The interviewer 3.1. Patient characteristicswas an academic researcher, independent of thehealth centre and not known to the patients. To guide Interviewees were 68 years old on average (S.D.the interviews, a series of open ended questions were 8.8, range 38–84 years); 51% were female. Thedrawn up a priori, with the assistance of a researcher mean BP was 157/88.5 mmHg and the medianexperienced in conducting qualitative research (Ap- number of years since diagnosis eleven (range: lesspendix A). Interviews took place on weekday morn- than 1–35 years). Two thirds (67%) had a positiveings or afternoons. All interviews took place at the family history of hypertension and/or cardiovascularhealth centre in a private room (with the exception of disease. The majority (73%) were married. Theyone patient who was interviewed by telephone) and were (or had been) most commonly in non-manuallasted approximately 30 min. With the patient’s occupations. Only 8% of the group smoked. All butconsent, interviews were taped and subsequently four were currently on anti-hypertensive medication.transcribed. Further patient details were obtained Demographic data was available for 46 non-re-during the interview or from the patient records as sponders. Despite the relatively low response rate,appropriate. These included: age, history, medica- there were no significant demographic differencestion, smoking, height, weight, ethnicity, occupation, between the interviewees and the non-responders.and marital status. Both groups were of similar age and socio-economic

status. However, in terms of the overall2.3. Data analysis generalisability of the results reported below, it is

acknowledged that those who volunteer to take partContent analysis was used to identify key themes in a study are likely to give more favourable

arising from the data. Content analysis entails re- responses than those who do not.configuring interview text into a series of meaningful The patients’ responses during the interviews werecategories [14]. A coding frame was generated from extensive and will not be reported in full. Thethe data by reviewing the data and identifying following sections focus on three main categoriescommon themes. The data was reduced to a collec- identified by content analysis: the patient’s currenttion of coding units. The emergent list of units was involvement, desire for involvement and the helpthen considered and similar units grouped together. considered necessary to enable any future participa-Each group represented a thematic statement that in tion.turn came under a category ‘heading’. Each category Some guidance on the presentation and interpreta-encapsulated the meanings generated by the coding tion of the findings is necessary. The numbers givenunits it represented. The contents of the categories in parentheses denote the number of patients makingand cross comparison of categories were then ana- an explicit response to the specified issue. This islysed to interpret the data. intended to reflect the extent to which a particular

Using a more quantitative approach, those indicat- view was held. Similarly, the quotes included areing a desire to participate were compared with those attributed to a given individual, but have been


chosen to indicate commonly voiced themes. It magazine article. The rationale for change could be ashould be noted that one patient may have made co-existing condition, such as cardiovascular diseaseseveral responses to the same question, which means (7) or diabetes (1), or simply a desire to be generallythat the numbers cannot readily be summated. The healthy.text also states where a single individual held a view.Such comments have been included to represent the In fact Dr X suggested – I said there’s somerange of ideas discussed, but care should be exer- leisure centre programme, I read in Informercised in affording them undue weight. magazine... So I went there and they said get a

letter from your doctor and Dr X kindly gave it to3.2. Current involvement in the self management me you know and accordingly she prescribed meof hypertension some exercise. (ID 11)

Patients were asked ‘What do you do about What should I do? I try to avoid stress, don’tkeeping your BP in check?’ The responses ranged smoke, exercise, I do all that you know. But Ifrom ‘nothing’ to mention of a number of lifestyle don’t, you know, consciously do that, its all partchanges (Table 1). In the first instance, patients of my normal, I mean if I didn’t have [that hightended to do nothing additional to taking prescribed blood pressure], I’d still [do those things]. (IDmedication and/or visiting the practice. 21)

Er, I don’t know as I do anything really. I haven’t Several patients mentioned barriers to makingfound that I’ve had to. Cos as I say, I’ve changes, such as the limited availability of time (8)remained constant since I’ve been on the tablets. and finances (2), arthritis (5), weather constraints (3)As I say I did cut down the smoking when I first and ageing (3). Comparing across themes, those whostarted which I thought would be a great help. (ID did not think about having high BP tended to simply23) take their medication, whereas those who reported

awareness of their BP status had often alreadyThe group had some understanding of the causes implemented lifestyle changes as part of self man-

2and consequences of high BP and what constitutes a agement (x test, P 5 0.056).healthy lifestyle. Of those who discussed lifestyle To summarise, many patients had already con-changes they had made (77%), 18 (38%) explicitly formed to health promotion messages and lifestyleconnected these with BP management. The common- changes appeared to have become integral to dailyest foodstuff mentioned was fat, although ten pa- life.tients referred to salt intake. Five specifically saidthat they made an effort to walk rather than travel- 3.3. Availability of opportunity to participateling by car or bus. formally in BP management

In some cases, change followed receipt of in-formation or advice from a health professional or a Patients were asked ‘Would you say that you’ve

had a say, a choice in how your BP is looked after?’Four main themes emerged (Table 2), examples ofTable 1which are given below:Healthy lifestyle changes made by interviewees

aChange made Number of responsesNo, no I wouldn’t, no. Not really no. Why is that?

None specified 11 Well I was you know just sort of told in theDietary 26

beginning that I would have to take this andExercise 18naturally I wanted to get it down so I just took theWeight maintenance 10

Stress avoidance and relaxation 8 pills, but I was never, never sort of asked reallyQuit smoking 5 by my doctor you know as to whether there werea Multiple responses were possible. other ways of doing it as some people think you


Table 2Opportunity for involvement in hypertension management

Theme Number of respondents

No. Patient implied that she /he would have liked a say. 5No. Patient passively complied with management regime by taking the medication, attending for BP monitoring. 28Yes. Patient felt she /he had played an active part in some way. 11Yes. Patient chose to comply with management regime – could have chosen not to. 5

know by diet and whatever, that was never, that had a say, nor did they expect it. The doctor wasnever really arose. (ID 48) seen as the ‘expert’ and his judgement trusted.

Not really I suppose. They say to have it checked 3.4. Desire for involvementevery 3 months and you just come and have itchecked. (ID 30) Patients were then asked if they would like to be

involved/more involved in how their BP was lookedI suppose I have because I mean I can say no I’m after. Where necessary, the interviewer mentionednot going to, you know, the choice is yours. If I potential options for lifestyle changes. The inter-felt, I think if I felt that I was being given too viewees’ responses are summarised in Table 3. Overmany things then I’d have to think about it and half (55%) expressed a desire to be more involved.say is this really necessary. But no, I think Dr X Seven patients specifically enquired what else theyexplains things most of the time. I suppose it’s up could do, reflecting an impetus to be more involvedto you to say no. It’s on your own head be it, you in self management. The following comments areknow. (ID 36) representative of the five main themes identified:

Well yes in that... he said they were setting up this Yes, if there was anything else I could do thatclinic and I was consulted, which I was quite might help to bring it down... or reduce thepleased with. (ID 15) tablets... yes I’d be interested. (ID 32)

In conducting comparisons across categories, the I don’t really know what the options would be.association between self management profile and (a) (ID 2)perception of choice, and (b) BP level was small andnot statistically significant (r50.2, 0.1, P.0.1). Well it depends on what I’d have to do. But, I’m

There was a general lack of awareness of any quite happy. I’m not worried about it. I thinkpotential for a patient to actively make choices about they’re watching over me. But if there wasBP management. Involvement was largely viewed as something that would give, really be more help, ofoccurring either via passive compliance, i.e., attend- course I would take part in it. (ID 37)ing for BP monitoring, or via discussion of care withthe doctor. The majority did not consider that they I try and do some walking, I try and not eat things

Table 3Patient’s desire for involvement in the management of their hypertension

Response theme Number of respondents

Yes, I would like to be involved. 15Yes, but how can I be involved? 5Yes, but it would depend upon what it entailed. 7No, I’m doing enough already, am happy as things are. 19No, I would not like to be involved. 3


that I shouldn’t, in other words keep the fat down, involved. Quite often the question was somewhatI don’t smoke and I don’t drink very much and hypothetical – participation as a concept was nottherefore I don’t think there’s that much more I something that patients had necessarily previouslycan do and as my blood pressure isn’t very high I considered. Many patients were quite content just todon’t have to worry too much about it. I don’t follow the doctor’s (or nurse’s) instructions, ratherthink I need to do anything. Every time I come than be pro-active. Nine interviewees felt that theyand they take my blood pressure they say oh had already made sufficient lifestyle changes andthat’s fine... (ID 26) were content to remain as they were, although others

recognised that they could be doing more. SelfNot really, no. Why should I? They say, oh you’ve management was a commonly preferred option (20).got blood pressure, or you’ve got a chesty cough Discussion surrounded limitations to past andand you just accept it and you take what they give future involvement, such as the patient’s limitedyou and that’s it as far as I’m concerned. (ID 16) expertise and the generally paternalistic system of

BP management. Some (4) cited a specific impetus3.5. Characteristics of patients wishing to to change, such as a worsening of their condition,participate although in general for ‘participators’, the possibility

of a lifestyle change ‘doing them good’ or theHalf of those interviewed expressed some interest potential for reducing (or stopping) medication use

in becoming more actively involved in their BP was sufficient.management. To determine the distinguishing Where appropriate, interviewees were asked whatcharacteristics of those who wished to participate, help they thought they might need in order to‘participators’ and ‘non-participators’ were compared achieve their plans to become more involved. Pa-on a number of features: demographic characteris- tients were sometimes hesitant to give specifics,tics, BP history, self management, views on BP considering that the ‘doctor knows best’ and beingstatus and knowledge. There were no differences content to follow professional recommendations.between ‘participators’ and ‘non-participators’ for Nine thought they had received sufficient help.age, socio-economic status, gender, smoking or Seven felt it was more a matter of helping them-marital status. Those who had been hypertensive selves, based on the information they had alreadylonger were less inclined to favour active participa- received.tion (mean 16.3 vs 8.5 years, P50.001). This was The most common (15) request was for advicenot linked to severity; those wanting to participate and information, e.g. about side effects, drug interac-had higher BPs (means 163.8 /91.9 vs 149.4 /83.8 tions and high BP in general. Although patients maymmHg, P50.001 for DBP and P50.002 for SBP). have already received some guidance, they thought‘Participators’ were more likely to have negative that counselling and advice could be tailored to anfeelings about their BP status (Fisher’s Exact test, individual’s circumstances. Patients could be advisedP50.08). Most of the patients had some understand- to ensure they weren’t overdoing things, or doing theing of what high blood pressure entailed, so it was ‘wrong’ things. Clear information from healthdifficult to relate knowledge to desire for participa- professionals would offset ‘old wives’ tales. Onetion. However, whilst those with a positive family person mentioned a leaflet. Three people soughthistory tended to know more, they were no more support and motivation to lose weight. Two ex-likely to want to participate. There was no difference pressed an interest in learning to relax more. Abetween the two groups in terms of reported current discussion group, led by health professionals, whereself management or level of knowledge. patients could talk about things that might help was

suggested. Six patients recalled attending previous3.6. Future participation presentations in the practice and had generally found

them helpful, but attendance was not always pos-Patients who had expressed some interest in sible. For instance, eight were not keen on taking

participation were asked how they would like to be part in classes, as they faced time constraints due to


work commitments. However, nine were in favour of as something the doctor did. Cahill [15] provides anattending such classes. Five did not know what help analysis of the concept of patient participation. Shethey wanted or what there was ‘on offer’ and were maintains that for true participation to occur, theopen to suggestions. Again, self help was seen as the knowledge gap between health professionals’ andway forward (12). Interviewees often asked how patients’ needs to be narrowed. What seems to be thethey could get more involved. case in the current setting is that patient involvement,

rather than participation was occurring. Cahill [15]I wasn’t really aware that there was anything else views involvement as a pre-requisite for participa-that I could do. (ID 32) tion. She classifies involvement as more of a one-

way process, where the health professional delegatesWhat else can you do, what can you do. I don’t activities to the patient and where the patient’s voiceknow, nobody’s ever said you know, don’t do this is largely ignored.or do this or the other. (ID 41) Just over half of the patients interviewed were

interested in a more active role in the management ofArmed with extra information patients could de- their condition. Of those who expressed a desire to

termine if there was anything else they could do to participate, around a fifth had previously only beinghelp look after themselves better. Extra information taking their medication, so there was the addedcould help allay concerns where comorbidity existed, potential for lifestyle changes. Interestingly, many ofe.g. in the elderly. However, the detrimental in- those declining to participate had already made somefluence of excess information was also highlighted lifestyle changes and did not feel the need for further(6) – it could cause patients undue anxiety. participation.

Participation is influenced by a number of patientcharacteristics, such as disease severity; social sup-

4. Discussion port and education level [16,17]. Those in favour ofplaying a more active role were characterised by a

This research set out to examine the patient’s tendency to have been diagnosed more recently, toperspective on existing BP management and views have a more negative view of their BP status and toon future participation in BP management. Data was have higher BPs than those disinclined to do so. Theobtained from 49 patients. Although they were a classic features of ‘participators’ – younger, female,specialised sample, many being regular attendees of middle class, better educated individuals – were nota BP clinic, they represent a group where the greatest distinguishable in this sample. However, the inter-opportunities for health promotion exist. viewees were largely older people and the sample

The majority of patients interviewed were general- size was possibly too small to detect differences forly aware of healthy lifestyle factors. Many had the other characteristics compared. Since older peo-already made some lifestyle changes that could ple are often characterised as being more reluctant tobenefit their BP status. Information regarding healthy make lifestyle changes than their younger counter-lifestyle has been in the public domain for some parts, it was encouraging to hear enthusiasm foryears now. For certain patients, the messages had making behavioural changes expressed amongst thisbeen reinforced in the health centre. Whilst these group.patients appeared to be reasonably knowledgeable There was evidence that some patients wereabout certain aspects of hypertension epidemiology willing to become more involved in BP management,and management, there remained scope for health but the opportunity for discussion has not yet beenprofessionals to promote consolidation and clarifica- fully tapped by the health professionals. Patients felttion of existing knowledge. that they needed more information and advice about

Despite the existing level of involvement in the available options before deciding on further partici-management of high BP, few patients saw this as pation in their care. Several patients wanted toplaying a part in the management of their condition. receive more individualised information and adviceThis is probably because they viewed management about the management of hypertension to enable


them to contribute to their care as informed particip- modalities for sharing knowledge and discussingants. This would help to encourage further self options. Whilst patient participation may be desir-management in those interested in playing a more able, education and training for both physician andactive role in the management of their condition. patient is needed for it to be feasible in practice. ThisThis accords with earlier findings: is particularly so given that health care providers

‘A key requirement for participation is access to seem poor judges of the extent to which a particularthe appropriate information base. Participants need to patient wants to be involved [16,6]. Evidence frombe able to ask questions and get answers and to know various sources suggests that better patient–doctorthat those answers represent the ‘true’ state of the communication can improve health outcomes [19],problem being addressed’ [18]. but we need to assess the cost of enabling improved

‘Involving patients more in making therapeutic communication [26]. Several researchers have dem-choices is justified if doctors can present options in onstrated success using interactive videos as aan unbiased and effective manner and if the process medium for informing patients about treatmentimproves the outcome of the care delivered’ [19]. choices [13,27]: these materials may yet prove cost

The precise form of any educational input will effective.require further research. Roter [20] described a studyof hypertensives who were prepared for activeparticipation by an education programme which

Acknowledgementsencouraged question-asking. Even the more passivepatient would benefit from information to allow for

The author would like to thank Andrew Singletoninformed consent to management regimes [21–23].and the two anonymous referees for their usefulPowers and Jalowiec [24] recommend that knowl-comments on an earlier version of this article.edge of factors important in predicting control andThanks to the practice staff and patients for theiradjustment outcomes in hypertension be used incooperation in the research.tailoring interventions and teaching.

The generalisability of the findings is somewhatlimited given the nature of the interview sample.Interviewees were those considered by the GP to Appendix Ahave reasonably well-controlled BP, hence they arenot representative of all hypertensive patients. Thepatients regularly attended for BP monitoring and so Patient interview proformawere more likely to engage in health seeking be-haviour. In addition, Richardson [25] has cautioned Introductionthat one cannot predict particular results on the basisof people’s intentions. An intervention study would How long have you had high blood pressure?be required to test the patient’s ability to actually Who do you normally see about your bloodmake behavioural changes. pressure?

5. Conclusions and implications for practice Patient’s understanding of condition

These findings highlight issues for future research 1. What have you been told about high bloodand clinical practice. First of all, BP control could pressure (what do you understand by this)?particularly benefit from increased participation [11]. 2. How do you feel about having high bloodSecondly, it would appear that those more recently pressure?diagnosed hypertensive are more likely to be willing 3. Do you feel ill?to participate in BP management. Health profession- 4. Do you have any symptoms that you think areals could target such patients, exploring suitable related to your high BP?


5. Does any of your family also have high blood Referencespressure? (or CVD, stroke)

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What influences a patient's desire to participate in the management of their hypertension?

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