The realisation of patient-centred care during a 3-year proactive telephone counselling self-care intervention for diabetes

Patient Education and Counseling 80 (2010) 219–226

Intervention

The realisation of patient-centred care during a 3-year proactive telephonecounselling self-care intervention for diabetes

Tina Gambling a,*, Andrew F. Long b

a University of Cardiff, Cardiff, United Kingdomb University of Leeds, Leeds, United Kingdom

A R T I C L E I N F O

Article history:

Received 10 March 2009

Received in revised form 2 November 2009

Accepted 6 November 2009

Keywords:

Patient-centred care

Chronic disease

Type 2 diabetes

Tele-care

Communication

Interactional dynamics

Self-care

A B S T R A C T

Objective: To explore the way that patient-centred care is realised within a tele-carer behavioural change

intervention.

Method: In-depth, semi-structured interviews undertaken at years 1 and 3 with a purposively selected

sample from the intervention group within a 3-year randomised controlled trial (RCT) of a telephone-

based education and support for persons with type 2 diabetes, and interviews with the non-medically

trained tele-carers and supervising diabetes specialist nurse.

Results: A four-phased flow of the patient-centred interactions was identified, which evolved over the

process of the intervention. Initially, attention centred on building a picture for and of the patient and

assessing their knowledge base. Later, focus moved towards understanding diabetes from the patient’s

perspective and advice-giving became more individualised. Throughout, the interaction dynamics varied

for patients.

Conclusion: This study provides insight into the development of patient-centred behaviours over time

and the influence of patients on tele-carer communication styles.

Practice implication: When adopting a patient-centred approach, tele-carers need to be flexible and

recognise that patients vary in their knowledge, skills and psychological adaption to diabetes. Continuity

of care and consistent contact is pivotal to patients being able to move through the various phases of

their illness trajectory and make the transition towards improved self-care management.

� 2009 Elsevier Ireland Ltd. All rights reserved.

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1. Introduction

To maintain healthy blood glucose levels, diabetes patientsmust adhere continually to a complex and often burdensome dailyregimen that includes monitoring and self-regulation of diet, bloodsugar levels, exercise, and medication. Diabetes self-care alsoentails coping with psychological distress, which can adverselyinfluence blood sugar levels and diabetes control [1]. Tele-medicine, coupling computer-supported advice and support viathe telephone, therefore presents a potentially powerful andwidely accessible way to support and enable self-care [2,3] withsupporting evidence from systematic reviews in a variety ofconditions [4–8]. Evidence of effectiveness is stronger for someconditions (heart failure) than for others (diabetes). There is alsogood evidence that telehealth is both feasible and improves healthbehaviour. But there is inconsistent evidence about mechanisms ofaction, clinical outcomes, cost-effectiveness, patient satisfaction,

* Corresponding author at: Ty Dewi Sant, Heath Park, Cardiff, CF14 4XN, United

Kingdom.

E-mail address: [email protected] (T. Gambling).

0738-3991/$ – see front matter � 2009 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2009.11.007

impact on service utilisation and acceptability [9–16]. One of thepriorities for research is to develop this evidence base and tounpick existing theory about how and why certain types ofintervention may be more beneficial, in order to develop moreeffective interventions.

To work effectively, the research [17–19] and policy [20–23]literature suggests that telephone-based support and advice mustbe informed by a patient-centred philosophy and operated as such.At the same time, the components of patient-centred consultationshave been the subject of much debate. Indeed, Mead and Bower[24] observe, ‘it has been used to refer to so many different concepts

that its scientific utility may have been compromised.’ Theirsystematic review of the empirical literature drew out a set ofinter-connecting dimensions including: a broadening of perspec-tive on illness; an understanding of the patient’s own experience ofillness; a shift to a shared participative model; and the develop-ment of a therapeutic alliance between practitioner and patient.Most recently, Epstein et al. [25] argued that patient centrednessrelates to a ‘moral philosophy’, with three core values: a focus onthe patient’s needs, perspectives and experiences; the opportunityfor the patient to input and participate in their care; and enhancingpartnership and understanding in the patient–practitioner

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relationship. Its core features involve: eliciting and understandingthe patient’s perspective; understanding the patient in his/herunique psycho-social context; reaching a shared understandingconcordant with the patient’s wishes; and helping patients toshare power and responsibility [26].

There has however been less research interest in the processthrough which patient-centred care is realised and factors thatlead to the development of rapport and bonding between patientand practitioner. An opportunity to explore some of these issuesand, in particular, to examine the enactment of a telehealth, self-care intervention founded upon the principles of patient-centredcare [26] arose within an evaluation of the Proactive, Call CentreTreatment Support (PACCTS) intervention with the primary aim toimprove physiological outcomes for persons with type 2 diabetes.The paper aims to explore the evolving interaction dynamicsbetween patients and the non-medically trained tele-carers andexamines how and if elements of patient-centred care were takenforward in the tele-carer–patient interaction.

2. Methods

The study formed part of a 3-year randomised controlled trial(RCT) to assess the effectiveness and acceptability of the PACCTSintervention [27–29], with the primary outcome of reduction inblood glucose levels, measured by HbA1c. A total of 591 patientswere recruited and randomly assigned in a 2:1 ratio to theintervention and control group. Patients in the study’s interventiongroup had a median age of 69 years, had had diabetes for a medianof 7 years and 42% were female. They predominantly lived in ahighly deprived city location. All patients gave their informedconsent and ethical approval for the study was obtained from thelocal Research Ethics Committee. The paper explores the telephonesupport component of the trial to enhance understanding of theoptimal characteristics of proactive telephone support within thiscontext.

The intervention was delivered by two non-medically trainedtele-carers, supported by a diabetes specialist nurse (herselfsupervised by the consulting physician). The intervention wasgrounded in a behavioural change motivational and empoweringcounselling model [30] and the principles of a patient-centredconsultation [26]. The telecare intervention aimed to develop self-care skills, mediated through changes in knowledge and attitudesto the disease and its treatment, and through improved patientself-confidence. The tele-carers followed the principles of patient-centred care and used a structured questioning approach,supported by a computer-based script, asking about medicalmanagement and lifestyle choices. The software acted as a promptfor the tele-carers and as a device to log information such asglucose levels and prescribed/or negotiated lifestyle changesready to follow up at the next call. The intervention was deliveredto patients in a stepped manner, patients receiving calls in afrequency inversely proportional to their level of blood glucosecontrol. Thus, those with ‘poor’ control (HbA1c > 9) received oneproactive call per month, while those with ‘good’ control(HbA1c � 7) received one proactive call every 3 months. Eachproactive call was scheduled for 20 min; patients could alsocontact the tele-carers on their own volition.

Thirty patients were selected through a purposive samplingapproach at the end of year 1 to take part in semi-structuredinterviews. The intention was to enable insight into a range ofviews from persons with different HbA1c control. Patients wereselected from four groups according to their pre- and post-HbA1c

results: those whose control remained either ‘good’ or ‘poor’(n = 13) and those whose control improved or deteriorated(n = 12), with equal numbers of men and women in each groupas far as possible. Five patients declined to take part in the 1st year

and a further 14 at the end of the 3rd year (due to workcommitments or holidays). The interviews explored how patientshad learned to make decisions about self-care, which elements ofthe intervention were helpful and which they would like to change.The interviews took place either at the University (travel expenseswere paid) or in the patient’s own home.

All tele-carers who worked on the project (the two original tele-carers and two others following staff turnover) and the diabetesspecialist nurse were interviewed (years 1 and 3). The interviewsexplored the ways in which they provided patient education,including the process of calling, the development of a relationshipwith the patient, reflections on skills and perceived benefits of theintervention. The interviews took place in the hospital, withinwhich the PACCTS intervention was situated. All the interviewswere tape recorded (with the informants’ permission) andtranscribed verbatim.

A list of codes was constructed based on areas relating to thetele-care–patient relationship and the strategies and processesthat were considered helpful in learning to better control and self-manage diabetes. The text pertaining to the higher order codes wasthen highlighted and coded, assisted by the N-VIVO qualitativesoftware package. Individual interview summaries were alsodrawn up to aid cross-individual analysis across the various HbA1c

change levels.

3. Findings

The findings map the evolving interaction dynamics of aproactive telephone counselling intervention for diabetes over thecourse of 3 years and the way that elements of patient-centred carewere enacted at different phases in the intervention. Fouroverlapping phases are evident (see Fig. 1): (1) building a picture(scene setting) of the patient’s knowledge and perceptions of theirdiabetes and setting the ground rules; (2) building a picture(person, condition and management) and understanding thepatient in his/her unique psycho-social context; (3) reaching ashared understanding of the problem and its treatment with thepatient, concordant with their wishes; (4) helping patients to sharepower and responsibility by involving them in choices to thedegree that they wish. These phases were not mutually exclusiveand there was no set time frame when each phase was realised. Thelevel of care influenced the interaction dynamics; for example, forpatients with good control and thus only receiving calls every 3months, it would generally take longer to build a picture of thepatient and their needs.

Broadly, the communication dynamics in the consultationscould be perceived as a spectrum of locus of control. At one end is‘paternalistic care-giving adviser’, at the other the ‘informedpatient’. In between is a ‘shared’ style where control is mutual orexchanged, thus leading to a ‘negotiated plan’. However, the tele-carers recognised that a lot of ‘ground work’ needed to take placebefore this was realised in practice. The tele-carers and patientsdescribed a staged process of evolving patient-centred care whichis explored below.

3.1. Building a picture (scene setting) of the patient’s knowledge and

perceptions of their diabetes and setting the ground rules

In order to develop collaborative goals, the initial aim was to getto know the patient, to begin to set some ground rules and to gainthe patient’s trust (Box 1). This formed the main focus in the first 6months of the intervention. Several processes were identified.

The first process centred on participation and engagement. Oneof the first things that the tele-carers did was to clarify the purposeand general ways of working with the call centre (extracts 1.1 and1.2). They explained the care provided, set the boundaries of what

Fig. 1. Phased flow of the patient-centred interactions: aims and associated processes.

Box 1. Building a picture (scene setting).

Extract Process

Participation and engagement

1.1: Continuing good controller (GG6) She is ringing me tomorrow because she usually rings me at half past eight in the morning which suits me fine

but I was poorly when she rang last time so my daughter left me in bed and apologized. So she is ringing me

tomorrow at half past two and then we will go back to the half past eight after, yes. So I have had to wait a spell

you know before I spoke to her.

1.2: Improving controller (PG3) You talk to somebody every month so if you have a problem you can discuss it with them and you get an

immediate answer

Pitching the interaction

1.3: Tele-carer (TC2) I am usually quite formal and professional to begin, . . . as I believe it sets the tone. I usually ask if that is the

person and then introduce myself and where I am calling from. And I do that every time even though they sort of

jump in because they know it is you, . . . Then, ‘Are you expecting the call?’ you know, so we know that they are

ready because sometimes just the voice can tell you that you have caught them on the hoof, . . . and then I can go

straight away into confirming their address and their GP.

1.4: Tele-carer (TC2) You are making a picture in your mind and you adapt as you would anybody you were talking to. If you were

talking to somebody who is articulate and understands what you are saying you will talk to them in a certain

way? . . . They also vary in background and intelligence how well they understand you. You have to gauge, you

have to speak to them at their level, use their language and not confuse or go above them— that is really

important.

Rapport

1.5: Tele-carer (TC1) I like to be friendly with them, I do not like to be dictatorial, you know? It is a more open approach really and get

to know them and make them think, that they are the only patient I have got kind of thing, . . . So you get to know

something personal about them . . . that you can bring out in the call and hopefully they will think ‘‘oh that was

nice that she remembered that’’.

Advice-giving

1.6: Improving controller (PG3) Whereas you get more detail, you know, things you know you thought you knew but you did not, . . . Well, if you

have got somebody there and you are always giving your blood readings . . . And also sort of diet things, you

know, silly things like she advised me to have a glass of fresh orange with my breakfast as part of my fruit intake

because it is not always easy to have 5 a day.

1.7: Improving controller (PG6) It is not new information but I think because of the call centre thing it is more, . . . stated, you might say. Because

every time I speak to her she mentions eyesight, feet or hands. So therefore you are more aware of it and

therefore your perhaps a bit more diligent on what you can do with your diabetes and so on and what to expect

long-term.

1.8: Continuing poor controller (PP2) They impress on you what you should eat. It is a lot to take in but they run through everything so that you can

understand and understand why you are doing it.

Key: Improving controller: a participant whose blood glucose control has improved from baseline to the end of the 1st year of the intervention. Continuing poor/good

controller: a participant whose blood glucose control has remained the same (poor or good) from baseline to the end of the 1st year of the intervention.

T. Gambling, A.F. Long / Patient Education and Counseling 80 (2010) 219–226 221


they could and could not offer and explained the logistics (forexample, what the calls would be like and how the patients wouldcomplete their blood sugar diaries). At this stage the tele-carerswere seeking agreement from the patients that they would engageand be active in the intervention. Opportunities were also providedfor the patients to ask questions and suggest what they felt theywanted to achieve. This opening dialogue allowed negotiations ofetiquette, and expectations from each party, for example, the tele-carer telephoning on time and the patient being prepared withtheir sugar readings.

The second process related to the pitch and style of conversationand aspects of safety (extracts 1.3 and 1.4). The tele-carers describedhow it was important to create a positive atmosphere at thebeginning of the intervention giving consideration to the patient asan individual and to his/her particular health problem and situation.They had to understand how to pitch the conversation to theappropriate level, intellect, accepted pleasantries and sense ofhumour. The choice of language also had a major bearing, as therewas a potential imbalance between both parties not just in literacybut also in knowledge and comprehension. A period of negotiationand rapport building was required for both parties.

The third process related to open rapport (extract 1.5). Amovement from rapport building to opening up, gaining trust anddeveloping a psychological presence was evident; this reflected aspectrum of concern moving from a focus on ‘the individual’ to ‘thedisease’ and then onto how these interacted. The tele-carersdeveloped a free-flowing, inquiry-based dialogue, finding outabout the patient’s life/lifestyle, knowledge and understanding oftheir diabetes. This required skilled questioning, active listening,simultaneous logging of information (to avoid repetition) and afocus on continuity of care.

The fourth process involved advice-giving to narrow theknowledge gap. Following the traditional approach, the care

Box 2. Building a picture (person, condition and management).

Extract Process

Planned, individually focused interactions

2.1: Tele-carer (TC2) Even though a question looks lik

in-depth. We ask them about exe

them really to take that up, and r

is quite important, and we expl

have taken their medication at t

we sort of have a chat with them

looking for, and If they are with

within the (limits) then we sort

2.2: Improving controller (PG10) When I first started on the study,

insulin, driving off to work, not h

the insulin and it was XXX who w

out of bed.’’ And, I went through

when to eat after my injection, w

Emotional support

2.3: Improving controller (PG8) It helps to discuss with them as

diabetes now, . . . It is better to t

people about it because I did no

asks.

2.4: Improving controller (PG4) My blood sugar levels went abs

everything and it came down. T

then I got worried until XXX ex

2.5: Tele-carer (TC1) I would say that I am compassio

identify with you, . . . Also it is im

things that may impact on their

can open up to you and trust you

you do have to be a bit hard, . . . I

the person understand those pi

2.6: Improving controller (PG7) They always check on everything

used to the caller. It is nice to he

Key: Improving controller: a participant whose blood glucose control has improved fr

controller: a participant whose blood glucose control has remained the same (poor

provider tried to enhance patients’ competence by providing moreinformation to enhance their knowledge and potential control.Advice-giving was specifically targeted to reduce the knowledgegaps (extracts 1.6 and 1.7). The advice component was essential toincrease the basic knowledge base of the patient before the tele-carer could address some of the more detailed issues (extract 1.8).

3.2. Building a picture (person, condition and management) and

understanding the patient in his/her unique psycho-social context

The second phase is characterised as ‘building a picture’ of thepatient together with the condition and management (Box 2). Itdescribes the developing relationship between the tele-carers andpatients. Once the patient had a basic understanding of theirdiabetes and was comfortable talking to the tele-carers, a level ofindividual care and individually tailored advice could emerge. Thisaided the interest and motivation of the patient, as the care becamemore focused around their lives and lifestyles. At the same time,the tele-carer–patient relationship remained balanced and re-spectful, enabling continual negotiation and appreciation of oneanother’s expertise. Two processes were evident.

The first process can be summarised as planned, individuallyfocused interactions. The tele-carers moved the focus from ageneral ‘getting to know’ the patient to developing a deepunderstanding of how the patient coped and managed theirdiabetes. They described a ‘reframing’ of the calls, in particulardetermining the patient’s knowledge, attitudes and beliefs aboutdiabetes in order to establish a baseline to work from. Individua-lised care became paramount. The tele-carers also realised that itwas not possible to address every aspect of lifestyle related todiabetes management in one call and patients were encouraged toparticipate in any decision-making (extract 2.1). The tele-carersused covert strategies to address specific points and deal with the

e it did not mean much, when you are actually asking them, it becomes quite

rcise, are they doing any form of physical activity, and, if not, try and encourage

easons why it is beneficial. We check their weight, . . . because again, the weight

ain to them why we are asking them about their weight. Make sure that they

he right time, . . . Then the final thing we do is collect the blood sugars and then

if the blood sugars are within parameters, . . . We have set limits that we are

in parameters, we encourage them, . . . If we find that the blood sugars are not

of do a little bit of detective work ourselves.

I was getting up for work having all the tablets that I take, injecting myself with

aving anything to eat until perhaps an hour, an hour and a half after I would had

hen things were not sort of working said, ‘‘Right, let’s start from when you get

the day with her and that is when she explained to me when to take my insulin,

hat types of foods better control the insulin. She just broke everything down.

well as other people. But, if someone asks if I am all right, I do say that I have

alk than hide everything, . . . Before the call centre, I was frightened of telling

t know that much but XXX explained so that I can now talk about it if anyone

olutely through the roof and it continued, so I did ring and we went through

here was an underlying factor. I had an infection. They put the insulin up and

plained

nate, very open I feel that it is important that the patients can talk to you and

portant that they (and) can talk to you about their background and peripheral

diabetes... You need to get to know them as people. They need to feel that they

, . . . However you can not collude with them and sympathise too much because

t is like a jigsaw puzzle you have to fit the pieces together and you have to help

eces in the context of their own life.

and I am always waiting for them to ring because I feel more settled when I get

ar their voices, not just because of the diabetes, . . . They give me a bit of a lift.

om baseline to the end of the 1st year of the intervention. Continuing poor/good

or good) from baseline to the end of the 1st year of the intervention.

Box 3. Sharing and finding common ground.

Extract Process

Reaching a shared understanding

3.1: Tele-carer (TC3) You are still giving them the same advice, if you like, but you are giving it in an encouraging way to carry on

doing that. And you will say, ‘‘well because you’ve got this control, do you know that you’re at less risk?’’ So all

the time you are reiterating that having the good control is quite important, not, ‘‘oh yes, you’re blood sugars are

fine, you know, we’ll speak to you next time’’. You are still trying to educate, even though you feel that they

might not need the education. I think still try and encourage them and praise them that they are still doing well.

I think that maybe helps them to carry on being good.

3.2: Tele-carer (TC1) Saying, ‘‘look, I know you’re doing this and I know you don’t really want to stop doing that but, if you did stop,

. . .’’ Or, I mean, what I spoke to this chap was, he said ‘‘one day I had really good blood sugars’’, he said ‘‘oh I ate

quite sensibly that day’’. I said ‘‘well really, what you need to try and do is aim to eat sensibly most of the days

really, and only have your treats occasionally’’. So I was trying to get him to do it that way round, because I think

he does know, but it is just trying to encourage them really to change. And you find, what I probably do is maybe

give him another chance, . . . And then, if they are still struggling, then I would probably refer to XXX or I would

say to XXX, ‘‘look, I’m really struggling with this patient, can you give me any ideas, what can I do next?’’


controller: a participant whose blood glucose control has remained the same (poor or good) from baseline to the end of the 1st year of the intervention.


problems they felt the patient was experiencing. One strategy (‘day

by day’) was to ask the patient to explain a typical day; the tele-carer could then break this down with the patient to address wherechanges were needed. Patients perceived this as being fairly non-threatening and helpful (extract 2.2).

A second process related to the emotional care of the patient.Understanding the emotional stability of the patient allowed thetele-carer to recognise how and when to approach sensitive topics.To build self-efficacy it was important that praise was given forgood control and a pragmatic approach was adopted to deal withpoor control. The telecare contact enabled patients to be able totalk more freely about their diabetes with others (extract 2.3). Theydescribed becoming more knowledgeable and comfortable withhaving diabetes in general. One patient, following experiencing afrightening elevation of their blood sugar levels, talked with thetele-carer, a reason was found and was reassured (extract 2.4). Thetele-carers talked about remaining positive and motivating thepatients. They became very intuitive as to when to broachparticular topics and recognised that there was a balance betweenbeing sympathetic and moving the patient forward (extracts 2.5and 2.6).

3.3. Sharing and finding common ground

This phase, beginning in the 2nd year and then ongoingthroughout the intervention period, was pivotal in re-focusing thetele-carer–patient engagement onto enhancing self-care (Box 3).The tele-carers describe moving the patients forward towardsbetter self-care. However, the patients often described their goalsin different ways, couching their motivations for self-care in termsof life goals and in functional rather than biomedical terms, such asthe need to ‘remain independent’ and ‘being able to walk.’ Somecommon ground had to be found.

Commonly, the tele-carers opened discussions about goals byoutlining the subject matter to the patients, giving them anopportunity to reflect on their own feelings and experiences. Evenwhen patients were doing well there was still a commitment togaining long-term good control (extract 3.1). Inevitably, the tele-carers had to deal with ongoing life events. For example, one ladybroke her leg; in hospital her sugars had been high; so when shecame home there was a need to readdress her insulin dose andtimings, together with thinking about healthy food that she couldmake easily as she was now not so mobile.

Some patients did not really want or were not ready to makechanges. For example, a tele-carer commented: ‘I think it’s mainly

his diet. I think he knows what he shouldn’t be having’ (TC3). The tele-

carers described different strategies they used with such patients,such as not to go over the same things within each call, to finddifferent ways of giving advice and motivating, to give them afurther opportunity to modify their behaviour, or if this failed torefer to the specialist nurse (extract 3.2).

3.4. Implementing a sustainable plan

The final phase, occurring towards the end of the 3rd year, arosefrom the tele-carers’ awareness that for some patients the callcentre would soon no longer be available. It was thus essential towork towards sustainable control by the patient (Box 4). A problemsolving approach was used centred on maintaining good control inall situations, including when patients were under pressure or inunfamiliar situations. The tele-carers recognised that if patientswere too regimented in their routines there was the potential to‘fall off the bandwagon’ (tele-carer, TC1) and make poor lifestylechoices. Three processes were identified.

The first centred on responding to questions and negotiatedproblem solving. Extract 4.1 illustrates a case where plans andactions were re-evaluated to develop an acceptable strategy; thetele-carer is described as wanting the patient to take a particularcourse of action, the patient tried this, reflected and together theplan was modified. Even for a good controller, compromise wasimportant (extract 4.2). Extract 4.3 illustrates the way in which atele-carer undertook this process, moving from advice-giving, tonegotiating and verifying that it was being taken on board.

The second process related to supporting the patients to adaptand adopt a diabetic identity and be able to cope in all situations.Throughout the intervention, the tele-carers not only providedadvice, but also supported psycho-social adaptation and motiva-tion. Now there was a need to explore and understand patients’ideas, expectations, feelings and the effects of the illness inrelation to long-term aspirations for self-care, health and wellbeing. For those who had good control it was a case of reiteratingthe importance of maintenance (‘basically you just tell them to keep

it that way’—tele-carer, TC2). For the patients still struggling(extract 4.4), the tele-carers continued to explore where theywere likely to have problems and looked at negotiating helpfulstrategies.

The third process addressed the concerns of patients in relationto sustainable control. Patients were now much more aware oflong-term implications of poor control. For many, this became astrong motivator to maintaining their desired control (extract 4.5).For others, the knowledge they had gained would be invaluable inthe future, for example, talking about how the physical benefits

Box 4. Implementing a sustainable plan.

Extract Process

Moving to a responsive approach

4.1: Improving controller (PG3) I do have a problem since I have got older with remembering the insulin, . . . Now, mostly I remember. Previously

it (my blood sugar) could get to 8 or 9 before I remembered (the insulin). I eventually discussed it with them and

XXX suggested that I lower the dose slightly because it is slow release. Other things we discussed were regular

food intake. I felt that she really wanted me to have my breakfast at 8, lunch at 12, tea at 4. But I explained that I

can not do that. Even when you are getting older, you still have your own way of doing things. We had a

discussion about the gap. I would have high readings at lunchtime and she wanted to know the cause. It was

probably because I was trying to comply with her regulations but I was not getting out of bed until late, finishing

my breakfast 9:30 or 9:45 and then having dinner at 1. So, we decided not to do it like that.

4.2: Continuing good controller (GG6) The advice about the meals, I did not think it was right for me so we just had to compromise. Even though you

are in your 70s you are still entitled to a life.

4.3: Tele-carer (TC3) I think you tend to pinpoint one specific thing each time. Like for this particular patient it is his diet, it is what he

is eating, so what I was trying to do was encourage him to have alternatives, if you like. You know, he was having

cheesecake and things after tea, and I said ‘‘well why don’t you have a scone or a piece of plain Madeira’’, you

know, trying to give the alternatives, . . . So we concentrate on one area really. And then you would maybe say ‘‘if

you can make those changes, that might help your weight’’, . . . So I would not try and give them too much to aim

for in one go, because I do not think that is quite feasible really, . . . I think you need to pinpoint and listen.

However there comes a time when you have to pull it all together.

Adapting to/adopting a diabetic identity

4.4: Improving controller (PG10) Because I am conscious of the fact that I have to give those figures to somebody and it has been explained to me

although I do not dwell on it, the implications if I do not control my levels the fact is I am susceptible to strokes,

etc. The underlying factors of diabetes, I do not like to think about it but I have been made aware through calls

and general conversation. Just knowing really. It is in the back of your mind. I really, really love chocolate. I could

eat four bars in the morning, and I am not saying I do not touch it but, I am more conscious of the damage.

Addressing future concerns

4.5: Improving controller (PG8) XXX explained about apples and porridge and how different foods affect not only your blood sugar but your

heart and body in general and how exercise can help you and if you do too much exercise, just watch your blood

sugar levels. You may not need as much insulin if you are exercising.

4.6: Improving controller (PG2) I feel better certainly. I am not getting infections. I know I had that one a few months ago but that could have

happened to anybody. Before, I used to get thrush and infection after infection because my blood sugars were

out of control. I take more care in things like having my feet done. I do not know, I just feel healthy. There are

sometimes when you feel like a wreck but the healthiest person does not always feel good I am sure I will

continue to follow the advice


controller: a participant whose blood glucose control has remained the same (poor or good) from baseline to the end of the 1st year of the intervention


from being on the programme would motivate them to continuefollowing the advice in the future (extract 4.6).

4. Discussion and conclusion

4.1. Discussion

The paper has provided insight into the way that patient-centred care was taken forward and realised within a 3-year, tele-carer intervention aimed at providing education, advice andsupport for sustained behavioural change for persons with type 2diabetes. Four major phases were identified, each illustratingdifferent facets of the theoretical literature on patient centredness[25,26] and highlighting a seemingly natural progression fromgetting to know the patients to dealing with the intricacies of self-care in the context of their everyday lives. The first, ‘picture-building’, phase provided the foundation for the subsequent threephases. Phase two linked explicitly to understanding the patient inher/his own context (knowledge, management and lifestyle).Phase three involved the process of negotiation, to match withwhat was possible and desirable for and by the patient, and phasefour the hoped-for shift towards enhanced patient responsibilityand sustained control, within their own life context.

The findings demonstrate the importance of the care providerembracing a patient-centred approach. The tele-carers showed awillingness to become involved in the full range of issues thatpatients experienced, understanding the personal meaning ofillness, not just their biomedical problems. Attending to the

patient’s story of the illness involved exploring both the presentingsymptoms and the broader life setting in which it was experiencedas well as eliciting each patient’s expectations, feelings and fearsabout the illness.

A parallel process developed in moving forward improvedcontrol and emotional care of the patient, for example, appreciat-ing the need to take small steps and to assess factors such aspatient confidence and readiness to make changes. From thepatient’s perspective, this was one of the compelling parts of theprogramme as it enabled them to gradually change theirmanagement and receive support along the way. When thepatient and tele-carers reached a point of a shared understanding,they were aligned to a key feature of a patient-centred approach,that is, a shift to a shared participative model and the developmentof a therapeutic alliance between practitioner and patient [26]. AsEpstein et al. [25] argue, through giving the patient opportunitiesto input and participate in their care, the care provider enhancespartnership and understanding. Undertaken in this manner, thetele-carers could discuss the long-term impact of the conditionwith the patient to assist their almost normalising their conditionand to explore sustainable self-care in the various scenarios of theirlives.

Many features of the patient-centred consultation model wereevident in this tele-carer intervention. Examples include: the tele-carer exploring, in phases 1 and 2, both the disease and the illnessexperience and understanding patients in their own life setting[24,26,31]; and working together to enable empowerment and thedevelopment of a therapeutic alliance, notably in phases 2 and 4


[24,32]. A critical backdrop was the ongoing nature of theintervention and continuity of contact, advice and care.

It is important to reflect on some of the methodologicaldimensions of the study. One of the study’s strengths was itslongitudinal nature (two in-depth interviews with the sameperson 2 years apart). One weakness was the small client interviewsample, suggesting the need for care in generalisation, especially toother groups, for example, younger persons or those with adifferent social-economic profile. The sample was howeverpurposively chosen to explore the experiences of patients withdifferent blood sugar control profiles. There remains a need formore reports on the ways that patient-centred care is realisedwithin practice within the behavioural change literature. Inaddition, further research, in particular longitudinal studies, isneeded both to clarify features that are particularly enabling andsupportive of behavioural change and to assist in the developmentof guidance for practice.

4.2. Conclusion

Self-care in diabetes is a complex topic. It needs to be brokendown into a form that is understandable and relevant toindividual patients and their lifestyle. A patient-centredapproach becomes critical. In the short-term, this approachimproves glycaemic control and positively influences self-management behaviour [17,18]. Our study demonstrates thatpatient-centred care occurs at different levels and paces withinan intervention. Patients do not acquire the complex skills tomanage their diabetes over the short-term. They move forwardat different times and paces, requiring regular reinforcement,ongoing education and support in order to appreciate thereasons behind self-care strategies, experiment, gain feedbackand re-try. The study has provided insight into ways thatpatient-centred care is realised over time and highlights theneed for more research to look at patients’ influences on bothmedically trained, and non-medically trained, practitionercommunication styles. Further research is needed in this areato assist in the development of guidance for practice.

4.3. Practice implications

Patient-centred care is not a simple concept; it incorporatesmultiple components that may be differentially helpful to patientsand at different times [25]. However, ways that patient-centredcare is realised within telehealth interventions is poorly describedin the literature [6,23].

The longitudinal nature of this study has demonstrated howpatient-centred care is played out in practice, from the perspectiveof the care provider and the patient. A phased approach is requiredto enable and support sustained behavioural change, for example,to build rapport, elicit the patient’s beliefs about the illness andtheir confidence and skills. Moreover, patients often need to revisitinformation/advice and want tailored advice. Even if workingwithin a defined treatment protocol, care providers need torecognise when patients are psychologically ready to makechanges and to encourage changes at a pace that suits the patients’needs. Adopting a patient-centred approach requires care provi-ders to be flexible and recognise that patients vary in theirknowledge, skills and illness trajectory.

Most importantly, there is a need to move towards increasingthe active role and control that patients take within, andconsequently beyond, the practitioner–provider interaction. Con-tinuity of care and consistent contact is pivotal to enablemovement through the phases. Staff turnover will necessitate arebuilding of the relationship with the patient and picture of thepatient and their self-care strategies.

Acknowledgements

The authors would like to thank the patients and tele-carerswho took part in the original study, its funders (GlaxoSmithKlineand British Telecom), the principal investigator of the PACCTSstudy, Robert Young, members of the PACCTS research team, and inparticular Jean Taylor. The opinions expressed are those of theauthors and not necessarily those of the funders.

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Documents

The realisation of patient-centred care during a 3-year proactive telephone counselling self-care intervention for diabetes