How people with Parkinson's disease perceive the role and

services of community pharmacists

October 2008

Virginia MacNeill
Senior Researcher
Department of Public Health
University of Oxford

Enquiries to: virginia.macneill@dphpc.ox.ac.uk

Abstract
The primary objective of this paper is to report findings from a study that explored how people
with Parkinson's disease perceive the role and services of community pharmacists in relation to
obtaining medicines and information about their medicines.
The findings would them contribute to the development of a postal questionnaire (reported
elsewhere) for a wider pilot study to evaluate specialist community pharmacies for people with
the condition. This paper draws on findings from three focus groups conducted with people
affected by Parkinson’s disease and recruited from three local branches of the Parkinson's Disease
Society. Participants taking part in the focus groups comprised five female and ten male patients,
with ages ranging from 58 years to 78 years. They had lived with the condition for between one
and 38 years. The focus groups took place in community settings, were recorded and transcribed,
and a grounded theory approach was used in the analysis. Findings suggest that most of the
people taking part regarded the pharmacist as more accessible and approachable than their
primary health care team. However there was a distinct lack of awareness that community
pharmacists' expertise could stretch beyond their clinical dispensing skills or that they could be an
alternative source of information and support. This suggests that patient education about the
knowledge and skills of community pharmacists is an important component in the development
of a more specialist, advisory role for people affected by Parkinson's disease
The study received NHS multi research ethics approval.

Keywords:
Community pharmacist, medicines, Parkinson's disease, qualitative

Background
Parkinson’s disease is a progressive and incurable neurological disorder and one of the most
common causes of disability in older people. It is caused by the loss of pigmented dopaminergic
neurones in the brain and the consequent depletion of the neurotransmitter dopamine. This leads
to increasing disability of movement, including tremor, rigidity, slowness, postural disturbance
and loss of balance (Sawamoto et al. 2002).
It is estimated that at least 10,000 new cases of Parkinson's disease are diagnosed in the U.K. each
year and average life expectancy, after diagnosis, is about 10 to 15 years, leading to a prevalence
of approximately 100,000 cases (Parkinson’s disease Society, 2008). Only about 5% of patients
are aged below 40 years at diagnosis, and incidence increases rapidly with age, with most patients
developing the initial symptoms between 50 and 70 years of age.
While physiotherapy, occupational therapy and less commonly, surgery, are used in the care and
treatment of people with Parkinson’s disease, the main form of treatment is medication to help
control the symptoms. However the drug regimes of patients vary widely, with individualised
medications and combinations of medications, dosages and timings, The medication itself is
associated with a number of side effects, including involuntary movements (dyskinesias) and
fluctuations in mobility (known as on/off effects). In addition, the medication should be
monitored and reviewed regularly as its effectiveness at controlling symptoms lessens over time.

The health care team for people with Parkinson’s disease usually comprises a consultant
neurologist, a general practitioner and more recently, a Parkinson's disease nurse specialist (a
community based nurse who has received specialist training in the management of Parkinson's
disease and monitoring anti-Parkinson's medications).
However, patients may have limited access to their consultants and their primary health carers
may not have sufficient specialised knowledge about treatment medication regimes.

Community pharmacists
Community pharmacists have always been involved in maintaining and improving people's health
by providing advice and information, and supplying prescription medicines. but have not
traditionally been regarded part of the health care team by the medical profession, although they
have the requisite expertise to facilitate the optimization of treatment regimens to improve
patients' quality of life and enhance long-term outcomes (Simonson et all, 2007). Indeed, in
recent years, UK health policy
has recognised the contribution that community pharmacists can make in the public health arena
and have sought to expand their role by incorporating them in the NHS plan. Important policy
documents include ‘Pharmacy in the Future’ (DH, 2001); ‘Pharmacy workforce in the new NHS
(DH, 2002) and ‘A vision for pharmacy in the new NHS’ (DH 2003), all of which advocate an
expanded role for community pharmacies as a primary health care resource within the NHS.
The latest UK government White Paper on pharmacy ‘Pharmacy in England: building on
strengths – delivering the future (2008) supports a strengthened role of pharmacy in the
management of long term conditions. This supports a report by the Royal Pharmaceutical Society
of Great Britain (2006) that proposed community pharmacists could help people with Parkinson’s
disease get the best from their medicines by developing a more specialist, advisory role within the
primary health care team.

However the results of some studies suggest that the public perception of community pharmacies
and pharmacists may militate against the development of a more prominent role within a health
care team. Studies such as that by Ward, Bissell & Noyce (1998) have also shown that many
customers find it difficult to reconcile the idea of public health services with the private enterprise
and retail setting associated with community pharmacy services. In addition, community
pharmacists are not always visible and from the customers' perspective they may be
indistinguishable from the counter assistant who takes in the prescription for dispensing or sells
non prescription medicines.

Although various studies have suggested that the general public are not fully aware of the
community pharmacists expertise in medicines and do not utilise this aspect of community
pharmacy services, we wondered whether this would include people affected by Parkinson's
disease. Bearing in mind the vital importance of medication in their treatment, how do people
affected by Parkinson's disease obtain medicines and information about medicines for their
condition?
We decided to explore the patients’ experience of obtaining information and medicines for
Parkinson's disease from their primary carers and from their community pharmacies. We also
decided to explore their utilisation of community pharmacists’ knowledge and expertise in the
management of their condition. This would be the initial phase of a much larger study and the
findings would contribute to the development of a patient survey questionnaire used to evaluate a
pilot project in which some community pharmacists delivered a specialist service to people with
Parkinson's disease, having been given specific training in the condition and its treatment.

Aim
The aim of this paper is to report the findings from the initial, exploratory phase of the larger
study. We particularly wanted to learn about
• The patients' experiences of obtaining advice and information about medication for
Parkinson's disease
• The patients' perceptions of the community pharmacist as a health care expert
• The patients' relationships with the community pharmacist
• The patients' experiences in obtaining medication

Method
We took a qualitative approach, in which purposeful samples of three sets of people with
Parkinson's disease were invited to take part in some focus groups. We chose to use focus groups
because they provide participants with an opportunity to exchange views and experiences
(Kitzinger, 1995) and they are very helpful in generating questionnaire items (Lankshear, 1993).
Indeed, focus groups are becoming more widely used as a data collection technique (Clarke et al,
1996) and we believed that this study would benefit from the perceptions of participants who
were at different stages of Parkinson's disease and had a range of mobility and speech
impairments

Participants and settings

Our participants were recruited from three local branches of the Parkinson’s Disease Society in
the South East of England. We gave a presentation about the study at a meeting of each branch
and about 4-6 patients from each branch agreed to take part in one of the groups. They were given
a patient information sheet about the study and the date, time and venue of the proposed meeting.
They were later contacted by phone or letter to confirm the arrangements.
The advantage in using local branches was that we were able to introduce ourselves and the study
to an already assembled group, and to arrange for the meetings to be held in venues that were
familiar to the participants, with level access to the meeting rooms. This was very important,
bearing in mind that some of the participants used walking frames and wheel chairs. Two of the
focus groups were held in a church hall and a social services community centre respectively, both
regularly used for branch meetings of the local Parkinson's Disease Society and the third took
place in a local carer's centre, an organisation that offers advice, information and support for
unpaid carers and whose premises are welcoming to people with all types of disability.

We decided that the meetings should last no more than an hour, as people with Parkinson's
disease can tire and lose concentration easily. Some of the participants were physically dependent
on their carers, who were hesitant about leaving them, so, with the consent of all the participants,
we were happy to agree that they could remain in the room but were not expected to contribute to
the discussion.
The groups comprised a total of 15 participants (10 male and 5 female), with ages ranging from
58 years – 78 years (see table below). The length of time since each participant had been
diagnosed with Parkinson's disease ranged from1 year - 38 years (see table 1 below).

Table 1 Focus group composition

Focus group Number of Sex ratio Age range Years since onset of
Participants (M : F) Parkinson's disease

Group 1 6 4:2 58-78yrs 1-38yrs

Group 2 5 4:1 67-78yrs 5-22yrs

Group 3 4 4:0 61-70yrs 5-21yrs

Approval was obtained for the study, from a NHS multi research ethics committee

Data collection
All three focus groups were facilitated by the first author, a qualitative researcher experienced in
conducting focus groups. The participants had been told beforehand that the aim was to illicit
their views and experiences in relation to gaining information and advice about medicines for
Parkinson's disease and the helpfulness of community pharmacies in the provision of their
medicines and medicines information.

At the beginning of each focus group session, the facilitator obtained written consent from each
participant and reminded them that any information shared within each group should remain
confidential. Equally, any participant was free to withdraw from the study at any time and
anonymity and confidentiality was assured.

A semi structured topic guide was used, developed from themes drawn from the published
literature on patients’ use of community pharmacies. (eg Hassell, Rogers & Noyce, 2000). To set
the participants at their ease, the guide began with questions relating to the diagnosis and
treatment of Parkinson’s disease. The focus group facilitator opened the discussion by asking the
participants to speak briefly about whether and how they had been involved in decisions about
treatment and medication options at the time of diagnosis and as the condition progressed. This
material provided valuable background information which helped to contextualised group
responses to later questions about perceptions and experiences of health care and pharmacy
services and whether they had found them helpful. Throughout the focus group discussions, the
participants were encouraged to share and compare their experiences.

Analysis
The interviews were tape recorded, and transcribed verbatim and the transcripts were then
imported into the QSR N5 software (previously known as NUDˆIST—Non-numerical
Unstructured Data – Indexing, Searching and Theorising), a computer programme for qualitative
data analysis (Richards, 2000).
In the beginning of each recording, the quiet, slurring speech of some of the participants was
difficult to comprehend. However, within a short period the transcriber (who was also the focus
group facilitator) became attuned to the recordings, although transcribing took longer than usual
because very careful listening was required. None of the recordings was discarded as unusable.

Our analytical approach was the constant comparison method used in grounded theory (Glazer
and Strauss, 1967). Data within each transcript was categorised according to themes which we
identified as emerging from the transcripts (Denzin and Lincoln, 1994; Silverman, 2001) and we
then compared these themes across the three focus groups to identify information which was
repeatedly present and relevant to the groups and this gave a picture of collective experience
(Taylor and Bogdan 1984).
The first author carried out a preliminary analysis and both authors examined the same data set
separately and then compared and discussed the findings.
Verbatim quotations from the focus group transcripts have been used to illustrate key themes in
this paper.

Findings
This paper presents a synthesis of responses relating to the topics discussed in the topic guide and
cover:
1. Obtaining advice and information about medication for Parkinson's disease from
the medical profession
2. Perceptions of the community pharmacist as a health care expert
3. Relationship with the community pharmacist
4. Obtaining medication
As with any group of patients, a broad spectrum of views and experiences were expressed.

Obtaining advice and information about medication for Parkinson's disease

All the participants were under the care of consultant neurologists who they visited every three
months or so. The neurologists would assess their progress and adjust their medication and
treatment if necessary. Between visits, the patients were looked after by their primary health care
team (usually the general practitioner, or a Parkinson’s disease nurse, if there was one available)
who would monitor their condition and provide repeat prescriptions for their medication.

Most studies about care of people with Parkinson’s disease emphasize the lack of knowledge
about the condition and its treatment amongst the medical and health care professions. We
interested to find out whether this was the experience of the focus groups and if so, whether and
how it affected their perception and use of community pharmacists as experts in medicines.

It was clear from all the focus group conversations that the participants were very knowledgeable
about medicines for Parkinson’s disease and there were animated discussions between the various
participants about various prescribed drugs and their side effects. They spoke positively about the
care they received from their consultants but they pointed out that in between their infrequent
appointments they were expected to call on their general practitioner or the Parkinson’s disease
nurse if they needed repeat prescriptions or help with their medicines. However, there was a
consensus that most general practitioners either lacked sufficient knowledge about Parkinson's
disease and its treatment or were unhelpful in communicating it. They were less sure about the
Parkinson's disease nurses; some participants perceived them to be knowledgeable about
medicines but others were not convinced. Not all of the participants had encountered a
Parkinson's disease nurse and many found them overburdened with work and consequently
difficult to contact. Therefore, relying on their general practitioner or other members of their
health care team for advice was not an option for most and it led participants to seek out
information about their condition and treatment for themselves. A typical comment was

‘’I look upon it as something I’ve got to work on to get a better life for myself. Because the
doctors aren’t concerned necessarily.’
(Male 1 Focus Group 3)

Not all participants interpreted this lack of information as lack of concern; others acknowledged
the complex nature of the disease made it difficult to treat.
In all three focus groups, there was a sense that most of the participants had learnt to shoulder the
responsibility for finding out about information about medicines and other treatment options.

Consulting a community pharmacist about medication for Parkinson’s disease

Negative perceptions
As the focus group members expressed a need to learn as much as possible about medication that
might be of benefit, we asked whether this had led them to consult a community pharmacist.
Their responses were mixed. Some had never consulting them as they felt sufficiently supported
by their medical practitioner. Others had low expectations of any form of health care or help with
their medicines had never regarded community pharmacists as a useful source of information.
Some did not to know that pharmacists were specialists in medicines and so had never considered
seeking their advice. A typical comment was:

“It hasn’t dawned on me to ask them or anything – I just take my medication and read the
prescription – the information is enclosed with it- I’ve never questioned it.”
(Female 2 Focus group 1)

Nor did they appear to differentiate between the pharmacist and the counter assistants, referring
to them collectively as ‘chemists’ who were not willing to enter into conversation:

'I find the chemist, all they know is ‘where’s your prescription.'
(Male 2 Focus Group 2)

Positive perceptions
However, some of the focus group participants knew of their specialism participants tended to be
extremely satisfied with the service they received
'They normally know a bit more – if you ask them to explain it – will it go with this – will it go
with that – they know quite well – really good to explain it all.'
(Male 1 Focus Group 3)

They reported that they had built up a positive and friendly relationship and it was readily agreed
in two of the focus groups that their community pharmacists had displayed patience and given
them plenty of time to talk, which was important bearing in mind their impaired speech and
slower thought processes. Similarly, being able to consult the same pharmacist was also regarded
as vitally important as they would become familiar with their condition and unique medicine
needs.

“Well they know me. Like P, I go there so regularly. They’re very quick with getting the order
and work out how I am. And generally being very friendly.”
(Male 2 Focus Group 3)
Added to this, the participants felt able to ask questions about their medication and the following
comment suggests there was no perceived professional barrier or social distance between the
participant and the pharmacist:

''I went in to fetch the pills, saw him and I would ask questions or just pass the time of day. They
were terribly helpful.'
(Male 1 Focus Group 3)

Nevertheless, none of the focus group participants wanting information about their medicines had
ever chosen the community pharmacist their first port of call

Collecting medication and visiting the pharmacy

As medication is so important in the treatment of Parkinson's disease, it is unsurprisingly that
most of the participants described themselves as frequent users of community pharmacy services.
Some visited the pharmacy personally and even knew the pharmacist by name, while others relied
on their family and friends... A few arranged for the pharmacy to collect the prescription from
their medical practitioner and deliver it to their home. Not everyone knew that this service was
offered by some community pharmacies and it created a buzz of interest as it was perceived as
valuable to people with restricted mobility. After some discussion it was agreed that the ideal
pharmacy was one that took only a few minutes to dispense the medication and provided a place
to sit while waiting. The main criticism of the dispensing process was directed at pharmacies that
kept them waiting a long time while they dispensed their prescriptions. All focus group
participants agreed that unlike the appointment based consultation model favoured by most
general medical practices the main advantage of community pharmacies was that they had
convenient opening times with no appointment required,.

Timing and order of medication

Keeping to a rigid drug taking timetable is essential if the symptoms of Parkinson's disease are to
be kept under control and most of the participants complied with their medication regime because
they were only too aware of the consequences of failing to take it on time, as this person
commented:

‘You start shaking and you think ‘what’s the matter?’ and then you suddenly realise you haven’t
taken your tablet.’
(Male 3 Focus Group 2)
However some of the participants reported changing the order in which they took their prescribed
drugs, as is illustrated by the following quotes:

‘Yes we do know our own bodies and what we can do and what we can’t do and if we feel that
we could spread out the medication a little bit differently or take two instead of one because you
are going out or you want to feel better, if you are going out in the evening and you want to feel
great you take an extra capsule.’
(Female 1 Focus Group 1)

‘Within parameters, I’m allowed to. The doctor came out of the surgery the other day and said
‘Don’t think we don’t trust you but we have to do this review every so often’ and apologised to
me for interfering almost. I think she was indicating to me that she was only partially
knowledgeable and that she would be quite happy if I was sensible, within a limiting band, as to
how I took the drugs, when I took them and so on.’
(Male 3 Focus Group 3)

All the participants were prescribed more than one type of medication; but packs of some
medication contained twenty-eight pills while packs of other medication contained more. They
found this extremely irritating and discussed 'rule breaking' strategies they had developed to
complete all the courses of medication simultaneously. They would sometimes change the times
or order in which they took the medication or delayed taking some drugs so that all medication
was completed at the same time:

Some pharmacists dispensed the medication in blister packs and child proof pill containers; not
surprisingly the participants complained that extracting the pills was exhausting and very
difficult. One participant did not realise that the pharmacist could supply the medicines in more
easily accessible containers.

'It's the blister packs. Every single time you have to press out the little tablets. Four or five tablets,
four or five times a day you have to press them out and it's such a fiddle. I have to collect them all
up because they scatter everywhere.'
(Female 1 Focus Group 2)
'Some of the packages are twenty-eight days and some are thirty. So if you settle on thirty, you
run out of the twenty-eight day ones. So I try and vary it and I generally sneak closer to the date
and that gives you the overlap between twenty-eight and thirty days.’
'(Male 4 Focus Group 3)

Although a source of annoyance mentioned cross all focus groups, none of the participants had
broached the subject with their medical practitioner or community pharmacist. This suggests that
none realised that this was a prescribing issue which could be easily remedied

Consultations within the pharmacy

Although the number of community pharmacies with private consulting areas is increasing, most
conversations between patient and pharmacist are held at the counter.
However none of the focus group participants reported that the public setting inhibited or
prevented them from asking the pharmacist for information and advice about their medication and
allied health care. One participant, who claimed to have regular discussions about medication,
said:

“I don’t think anybody takes any notice quite honestly' (Female 1 Focus Group 1)

However another participant commented that privacy was irrelevant as he did not engage in
conversation with the pharmacist, nor did he want to. He reported that he happily dropped off his
prescription and picked it up later, with minimal conversation with the counter clerk.

'When I want another prescription I take my leaflet that is in the packet and tick off what I want,
put it in the letter box and in 48 hours you can go an pick it up'.
(Male 3 Focus Group 3)

None of the focus group members had ever made their community pharmacist the first port of call
when seeking information about their medicines.

Discussion
While the provision of health care for people with Parkinson’s disease hinges on a timely
diagnosis and appropriate medication regime, the findings from this exploratory study are that the
participants judged pharmacy services in terms of the premises, opening times and the personal
qualities of the pharmacists and counter staff. These are matters associated with social
engagement and familiarity and resonate with the notion of social distance observed by Hassell,
Rogers and Noyce (2000) in their findings that patients are more at ease with the community
pharmacist. This has also been observed more recently by Bissell, Blenkinsopp et al (2007),
although in that study it was attributed it to the model of care introduced as part of a new
medicines management service.
One of the main issues that differentiate the community pharmacy from other health care
provision is the perception that pharmacists are situated in high street locations and so perceived
as part of the retail experience rather than part of a primary health care team of highly trained and
skilled professionals (Ward et al, 1998). Indeed, the focus group participants in our study gave no
indication that they regarded themselves as patients, which may also explain the perceived lack of
social distance, a phenomenon so often present in doctor/patient relationships. Further evidence
that the focus group participants did not regard themselves as the pharmacists' patients was their
lack of concern about privacy or the availability of consulting rooms. A central ethical principle
in the patient/doctor relationship is that discussions about health matters should be held privately
and in confidence within individual consulting rooms on health care premises

Most of the experiences drawn out from our focus groups could be generalised to findings from
other studies; for example, other studies have shown that many physical conditions affect the
ability to open different types of medicines containers and this is also associated with increasing
age (Atkin Finnegan et al 1994; Beckman, Bernstein et al 2005). The findings show that
community pharmacists were not really utilised for any medicines expertise they may have had in
Parkinson’s disease although some of the participants did engage them in discussions about their
medicines. Thus, the findings largely contradict those from a study by Chen and Britten (2000)
who reported that patients were willing to enter into detailed discussions with community
pharmacists about their medication.
As medication management is complex for people with Parkinson’s disease, it seems
extraordinary that not only were many of the participants unaware of the extent of the community
pharmacists' expertise and potential for providing helpful advice, but that they were not directed
to this source of support by their general practitioners or other health care providers. This
contradicts another study suggesting that they would welcome shared responsibility with the
community pharmacists in the delivery of health care (Tinelli et al 2004).

Strengths and limitations of the study

Much of the previous research into the use and utilization of community pharmacy services has
relied on seeking out the experiences of pharmacy professionals and while these studies are
important, they provide little insight into the experiences and perceptions of patients. The focus
group method is particularly appropriate for exploratory work to identify meanings and
perspectives and they were conducted with patients who were at different stages of the disease
and so had different experiences and perspectives. However, the findings should be interpreted
with some caution as they were based on a limited number of focus groups and group responses
may in some instances differ from those expressed by particular individuals. Despite these
methodological caveats, the material collected has captured some of the most important issues
facing people with Parkinson’s disease in respect of appropriate support, advice and information
about their health care and medication. We have used these perceptions and insights in a later
study to help develop a measure designed to evaluate a particular intervention (the specialist
community pharmacy programme for people with Parkinson's disease) which will be reported
elsewhere.

Conclusion
Participants were divided about the value of a specialist community pharmacy service for people
with Parkinson's disease.
The government's policy for specialist community pharmacies aims to develop a more specialist,
advisory, health care management role alongside their core dispensing function. However, the
findings in this paper show that community pharmacists are currently viewed as occupying a
functional dispensing role rather than an obvious source of advice and support, thus affirming
similar studies. Nevertheless, a contextual and underlying factor in the study is that that many of
the participants did not feel supported by their general medical practitioner and primary health
care team and so may be open to other forms of advice and support. Therefore, there may be
potential for community pharmacists to develop a more specialist, advisory role for people
affected by Parkinson's disease.

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