Research in Social and

Administrative Pharmacy 13 (2017) 403–439

Review Article
A systematic review and thematic synthesis of patients’
experience of medicines adherence
A.P. Rathbone, M.Pharm.a, A. Todd, Ph.D.a, K. Jamie, Ph.D.b,
M. Bonam, B.Sc.c, L. Banks, Ph.D.c, A.K. Husband, D.Prof.a,*
a
School of Medicine, Pharmacy and Health, Durham University, University Boulevard, Queen’s Campus, Stockton-on-Tees
TS17 6BH, United Kingdom
b
School of Applied Social Sciences, Durham University, 32 Old Elvet, Durham DH1 3HN, United Kingdom
c
AstraZeneca PLC, Charter Way, Macclesfield SK10 2NA, United Kingdom

Abstract
Background: Medicines non-adherence continues to be problematic in health care practice. After decades
of research, few interventions have a robust evidence-based demonstrating their applicability to improve
adherence. Phenomenology has a place within the health care research environment.
Objective: To explore patients’ lived experiences of medicines adherence reported in the phenomenonologic
literature.
Methods: A systematic literature search was conducted to identify peer-reviewed and published
phenomenological investigations in adults that aimed to investigate patients’ lived experiences of
medicines adherence. Studies were appraised using the Critical Appraisal Skills Programme (CASP)
Qualitative Research Tool. Thematic synthesis was conducted using a combination of manual coding and
NVivo10 [QSR International, Melbourne] coding to aid data management.
Results: Descriptive themes identified included i) dislike for medicines, ii) survival, iii) perceived need,
including a) symptoms and side-effects and b) cost, and iv) routine. Analytic themes identified were i)
identity and ii) interaction.
Conclusions: This work describes adherence as a social interaction between the identity of patients and
medicines, mediated by interaction with family, friends, health care professionals, the media and the
medicine, itself. Health care professionals and policy makers should seek to re-locate adherence as a social
phenomenon, directing the development of interventions to exploit patient interaction with wider society,
such that patients ‘get to know’ their medicines, and how they can be taken, throughout the life of the
patient and the prescription.
Ó 2016 Elsevier Inc. All rights reserved.

Keywords: Medicines adherence; Treatment compliance; Phenomenology; Social pharmacy; Qualitative research; The-
matic synthesis

Funding: This work was funded by a joint educational award from Durham University (60%) and AstraZeneca
Plc (40%).
Conflict of interest: The authors report funding from AstraZeneca Plc and Durham University. AstraZeneca Plc
was not involved in the search, selection, synthesis or preparation of this paper.
* Corresponding author. Tel.: þ44 191 334 0102.
E-mail address: [email protected] (A.K. Husband).

1551-7411/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.sapharm.2016.06.004
404 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Introduction people missing a medicine by a few minutes is

non-adherence, for others taking it within a few
Medicines adherence, defined as ‘how well a
hours is still adherent. The variation in self-
patient takes their prescription medicines,’ con-
report measures has been demonstrated to over-
tinues to be problematic in health care practice.1
estimate adherence, suggesting these measures
After decades of research, there is little consensus
never to be used alone.7 Whilst it is well recog-
on improving poor adherence or tackling non-
nized no single method is preeminent and multiple
adherence.1,2 Current approaches to research
methods of measuring the same phenomenon
have resulted in numerous ways of measuring
offer an element of triangulation and validity,8
adherence, such as self-reported questionnaires,
these methods unintentionally conceptualize
pill counts, and electronic packaging with more
adherence as an epistemologically different phe-
recent advances adding stomach-acid-activated
nomenon; as a representation of an ability to
microchips to medication dosage forms.1,3 This
collect prescriptions once a month including ele-
has arguably led to multiple conceptualizations
ments of planning, and access to pharmacy ser-
of the phenomenon, and has resulted in semantic
vices determined by wider, socio-geographic
confusion, from concordance, to compliance, to
determinants; as a representation of patient-
adherence. Often differences between definitions
specific, repetitious objective behaviors located
relate to varying degrees of patient-centered
at the right time and date and finally; as a repre-
care, with changes often relating to how the pa-
sentation of patients’ own subjective beliefs about
tient ‘fits into’ the phenomenon, ranging from
their behaviors when under investigation in
following the prescriber’s orders, agreeing with
research. These different conceptualizations of
the prescriber’s decisions, and or making decisions
the functions of adherence, representations of
supported by a prescriber, respectively.4 Methods
adherence or ‘ways of thinking about adherence’
of measuring adherence are heterogeneous, this
may have inhibited the understanding of adher-
has resulted in multiple conceptualizations of
ence from moving forward. A significant majority
adherence, for example Hess, Raebel, Conner,
of research investigating adherence is conducted
and Malone5 reviewed measures of adherence
within the quantitative, positivist paradigm. This
that were based on the number of times a medi-
paradigm relates to an underpinning ideology of
cine was collected from a pharmacy, this demon-
what reality is and how reality can be experienced.
strated a number of calculations that could be
Positivism describes reality as posited – essentially
used to measure adherence and conceptualized
this means that reality and truth are ‘out there in
‘adherence to medicines’ as a function of prescrip-
the world’ waiting to be discovered. Positivist ap-
tion collection, that is to say that collecting the
proaches often use quantitative methods to
medicine from a pharmacy inferred patients’
discover, identify and prove truths that exist ‘out
adherence to taking the medicine. Conversely
there in the world’ waiting to be discovered. How-
van Onzenoort, Neef, Verberk, van Iperen, de
ever, due to the nebulous nature of the adherence
Leeuw, and van der Kuy6 investigated a product
phenomenon (is it a belief, an attitude, a short-
that measured adherence at the date and time a
term behavior or a long-term set of behaviors?)
product was popped from its blister packaging,
using a positivist approach might overlook essen-
adherence here then is conceptualized as some-
tial aspects of what it is actually like to experience
thing precise, to do with using medicines at the
the phenomenon, thereby limiting how the phe-
right date and time, and represents a different
nomenon can be conceptualized and understood,
way of thinking about adherence compared to
measured and modified. An alternative approach
Hess, Raebel et al. (2006), rather than ‘adherence’
to investigating the phenomenon may be required
meaning collecting a prescription once a month,
to deliver insights, generate new understanding,
‘adherence’ becomes much more onerous, a set
and direct practice.
of behaviors enabling repetitive tasks to be carried
Qualitative research can provide an alternative
out. In studies that use questionnaires, self-reports
approach, although disciplinary conventions, such
or interviews, adherence is measured as a function
as journal types and word length, can mean that
of the participants’ memory (i.e. being able to
research findings are not as pervasive in the field
remember that they had taken their medicines as
as they might be.9 Qualitative research includes
they were prescribed) as well as being influenced
multiple methods of data collection such as
by participants’ own understanding of ‘what it
semi-structured or unstructured interviews; focus
means to be adherent,’ that is to say, for some
groups; ethnography; and observational studies.10
 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439 405

Qualitative research enables rich, detailed data to The aim of this systematic review was to
be collected and analyzed, allowing novel perspec- explore patients’ lived experiences of medicines
tives to be generated and phenomenon to be adherence reported in the phenomenological liter-
explored at a fundamental level, ontologically ature, through systematic review and thematic
and epistemologically. That is to say, qualitative synthesis.
research can help identify what a phenomenon
‘is.’ The need for this kind of fundamental quali-
tative research has been systematically identified Objectives
in the adherence literature.1,2,11 To explore patients’ lived experiences of med-
Within the qualitative paradigm, phenomenol- icines adherence reported in the phenomenolog-
ogy is positioned as a method and theoretical ical literature.
framework, based on the philosophical works of
Heidegger and Husserl.12 The approach has devel-
oped over the last century to embody a method of Methods
research, which can appear far removed from the
scientific biomedical paradigm.13 Phenomenolo- Protocol and registration
gists argue that phenomena, such as medicines This review follows PRISMA Guidelines for
use, are constructed through conscious interaction reporting systematic reviews.21 Methodological
between subjective humans and the objective phys- limitations were assessed following the CASP
ical world. Thus to understand phenomena, re- Qualitative Research Tool and summarized by i)
searchers must engage with those that have medicines/health issue, ii) methods, iii) sample
‘lived’ through the phenomenon.12 Collecting size, iv) sample characteristics, and iv) major find-
data is concerned with uncovering what others ings.22 The review protocol is registered with
have experienced through interviews and focus PROSPERO [Registration number CRD42015
groups – as well as collecting ‘grey’ data from 029494].
photography, poetry, and studying other arti-
facts.12 Data can be analyzed through interpreta- Eligibility criteria
tive phenomenological analysis or descriptive
The criteria for selecting records for inclusion
transcendental phenomenological reduction as
in the review were i) was a phenomenological
well as more conventional thematic qualitative
investigation ii) was in adults (defined as 18 years
analysis.14 Phenomenology has a place within the
and older) iii) was published in a peer-reviewed
health care research environment15 with methods
journal iv) aimed to investigate the patients’
adopted by nurse researchers to add unique in-
experiences of medicines adherence.
sights to the literature,14 in areas such as heart fail-
ure and HIV, using medical devices to deliver Exclusion criteria
continuous positive airway pressure (CPAP) and
specific treatments, for example cholinesterase in- Excluded studies were not published in peer-
hibitors in Alzheimer’s disease.16–19 Phenomeno- reviewed journals; were not in adults; did not aim
logical methods deliver insights into the ‘lived to investigate patients’ experience of medicines
experience’ of health care phenomena of nursing, adherence and were not phenomenological
medical and pharmaceutical interest. investigations.
Systematic reviews and meta-analysis are
Information sources
widely accepted by health professionals as a
gold-standard approach for pooling data from A systematic search was performed to identify
multiple studies. Formal statistical methods can phenomenological articles that investigated
quantitatively synthesize data from multiple sour- patients’ experiences of medicines adherence.
ces in the literature, however, where this is CINAHL, PsychInfo, Web of Science, Sociolog-
inappropriate, as is the case for qualitative data, ical Abstracts, and MEDLINE were searched.
a thematic or narrative synthesis can be an Databases were searched individually using the
appropriate approach.20 Thematic analysis of keywords displayed in Table 1 below. Additional
phenomenological research may provide insights records were identified via the snowball method
into patients’ lived experiences of medicines through personal libraries of the authors, profes-
adherence and direct future strategies for adher- sional research networks and searching the refer-
ence interventions based on patient experiences. ences of the included records.
Table 1

406
Summary of included studies
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
Abedian UK Sickle cell In-depth 10 6 women, 4 men, with Interpretive The study did not Patients understood the
et al. (2010) disease semi-structured HbSS genotype explicitly report a importance of using

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

interviews sickle cell anemia, description of the penicillin and were
self-identified Afro- experience of happy they had
Caribbean, 18–52 medicines adherence. received enough
years information from
their doctor/nurse.
Adherence was
influenced by
polypharmacy,
duration, schedule,
dosage, ‘lack of
immediate
consequences,’
lifestyle and physical
and psychological
adverse effects. The
study concludes that
simply educating
patients about their
medicines will not
influence adherence;
that patients’
concerns, beliefs and
personal attitudes
need to be elicited
and redressed if
adherence is to be
improved.
De Geest Belgium With ‘life-long Interviews 14 7 women and 7 men Descriptive Adherence was Identified themes of i)
et al. (1994) medication described personal attributes,
dependency’ environmentally as a including emotional
(patients with kin to eating and distress, confidence
epilepsy, drinking, personally in the physician,
cardiac and as negotiated by normalcy and
 renal emotion and perceived health
transplant) relationships with status, ii)
others and through environmental
self-efficacy, which attributes, including
was mediated by routine, distraction,
interactions with the social support and

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

drug and the cost, and finally iii)
regimen. self-efficacy,
negotiated by
adverse effects,
formulation,
medication aids and
dosing schedule. The
work attempts to
map these findings
within the context of
Bandura’s self-
efficacy framework
to produce a tool to
monitor medication-
taking behavior.
De Moss America HIV In-depth 12 Middle-aged, black Not reported Significant events lead This qualitative study
et al. (2014) semi-structured women, aware of to changes in of 12 middle-aged
interviews their HIV status for perspective and black women
at least 2 years from motivation to adhere presents a novel
the ‘deep south’ to HAART, understanding of
(Atlanta, Georgia, recognition of adherence to
USA) ‘personal strength’ to HAART. The
adhere to regime authors used in-
facilitated adherence depth interviews to
and this was explore themes
mediated by trust in related to adherence.
the health care The authors
provider. identified three main
themes, i) significant
life event ii)
recognition of ability
to adhere/be healthy

(continued)

407
Table 1 (continued )

408
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
iii) relationship with
health services. This
work speaks to the

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

‘healthy adherer’
concept whereby
once women
recognize their self-
efficacy is able to
adhere ‘more
strongly.’
Paradoxically this
research also showed
that negative
experiences of health
services promoted
adherence to
HAART as women
avoided
hospitalisation/
further interaction
with health services.
Enriquez, America HIV 60–120 min in-depth 13 Adherent for one year Husserlian The findings from this This phenomenological
Lackey, interviews following non- study included i) investigation into the
O’Connor using a series adherence who cycle of non- experiences of
and McKinsey of open-ended became adherent adherence and medication
(2003) questions without formal negative health adherence to HIV
intervention, 11 men behaviors following treatment following a
and 2 women diagnosis, ii) a period of non-
significant life-event adherence elicited a
leading to a decision detailed description
to be adherent and of the phenomenon
iii) readiness for of readiness for
adherence where adherence. Readiness
patients adhered to followed a significant
treatment. life event which
triggered a desire for
 life and other healthy
behaviors. The study
was in 13 HIV
positive individuals
(11 men and 2
women) recruited

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

through secondary
care. Their HIV
adherence was
measured according
to a clinical marker.
Gamble UK Asthma/ Interviews 10 3 males, 7 females, with Hermeneutic Adherence is made up The study identified five
et al. (2007) corticosteroids ‘difficult asthma,’ interpretive of a complex set of themes, i) fear of
aged 25–48 decisions that are adverse effects, ii)
iterative and knowledge is power,
dynamic, mediated iii) weighing up costs
by continual change. and benefits, iv) loss
of self, and v) impact
on lifestyle.
Hansen, Holstein Denmark General 35–106 min 20 20 young women who Schutz’ Young women had The study found that
and Hansen interviews have experienced phenomenology negative attitudes women generally
(2009) taking medicines (life-world) toward taking have a negative
medicines but this attitude toward
perspective was medicines taking but
overcome by the found that other
demands of everyday goals took priority
life and the over their negative
indication of the attitude. The goal or
medicine. indication of the
medicine over-
powered their desire
not to take
medicines.
Henriksen Denmark Schizophrenia Not reported Not Not reported Not reported The patient does not This phenomenological
and Parnas (2013) reported experience their inquiry into insight
initial self-disorder in schizophrenia and
from which psychosis it’s relation to poor
emerges as compliance provides
‘symptoms’ of an a novel, detailed

409
(continued)
 410
Table 1 (continued )
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
illness and perspective of
consequently their compliance.

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

existence and identity Although the paper
are not compromised does not state
internally, leading to methods, data
non-adherence. collection, analysis
or empirical results,
the paper delivers
robust
phenomenological
insights.
Jones (2002) US HIV/AIDS Semi-structured 9 3 women, 6 men, with Not reported Adherence to anti- The study used
interviews HIV infection from retroviral therapy by qualitative interviews
occupational nurses with HIV was to understand the
exposure, sexual described as a experience of
transmission and double-edged sword. adherence to anti-
contaminated blood Describing retroviral medication
products, over 18 adherence as ‘life- by nurses with HIV
years old, could changing.’ in the United States
speak English who of America. The
had taken study describes
medication for adherence as a life-
longer than 6 changing
months, 8 Caucasian phenomenon and
and 1 Hispanic identified six themes,
i) managing and
being managed by
the meds ii) coping
with the meds iii)
feeling lousy iv)
negotiating the
hassles and the cost
v) living under a dark
cloud and an
encompassing theme
of vi) becoming a
 patient. The authors
highlight ‘symbiosis,’
‘normalisation’ and
an appreciation of
the ‘life-long’ nature
of adherence. The

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

work concludes by
identifying
participants as
‘wounded healers’
and advocates
support groups.
Jones (2003) US HIV/AIDS Semi-structured 10 HIV positive, over 18 Not reported Adherence was The study identified
interviews years old, able to described as a three themes to
speak English, been reminder of illness describe the
taking HAART over and death (belief that experience of
6 months and willing God would keep adherence to
to share experiences them alive if they HAART medication,
were non-adherent), these included i)
as a relationship with commitment versus
the pills and perseverance, feeling
negotiated by bad and healing
routine. Response to helpers. Pills were
medication was also positioned as
an important factor, reminders of illness,
where patients new emphasizing the
an immediate importance of
response was felt routine and
they were more adherence as an
adherent (to insulin agent of survival.
for example). Describing a
relationship with the
pills.
Kwinter (2005) US Depression Semi-structured 11 8 women and 3 men, Not reported Adherence was This qualitative study
interviews over 18 years old, be embodied through used in-depth
using an experiences of interviews to describe
antidepressant for stigma, dependence, adherence to
depression for at control, power and antidepressant
least the past 4 social system. medication for

411
(continued)
Table 1 (continued )

412
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
months, engaged in Essentially people reporting a
psychotherapy with a describing adherence diagnosis of
non-physician and as a social depression and

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

able to conduct the phenomenon, attending non-
interview in English. negotiated by social physician counseling.
actors or institutions. The study identified
Antidepressants were themes of stigma and
described as dependence, with
preventing ‘feelings’ participants
being dealt with describing
appropriately whilst antidepressants akin
on medication. to insulin for
diabetics in that ‘it
keeps you from
dying.’
Lau et al. Canada Osteoporosis Mixed focus groups 37 Post-menopausal Not reported Adherence is mediated This study used a mixed
(2008) women using at least by a number of phenomenological
one prescription for factors, most notably approach to identify
over-the-counter relationships with strategies to improve
product for health care adherence, these
osteoporosis, could professionals, were i) belief in the
speak English, administration importance of
cognitively impaired requirements and medication
or unable to manage routine, and adherence ii)
medication knowledge about the medication specific
medication and factors iii) beliefs
disease. about medication
and health iv)
relationships with
HCP v) information
exchange and vi)
strategies to improve
adherence, which
including sub-themes
of using systems of
adherence, using cues
 and reminders,
understanding why
medication is taken,
regular follow-up
and monitoring.
Concluding that

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

strategies to improve
adherence should be
individualized.
Mohammadpour, Iran HAART/HIV In-depth 19 Hospitalized patients in Interpretive The study identified The study used IPA to
Nasrabadi and semi-structured the infectious four themes i) investigate the
Nikbakht (2010) audio-recorded diseases ward in choosing to live, ii) experiences of
interviews and varying strategies for adherence to highly
observations organizations in adherence iii) active anti-retroviral
field notes Iran. 11 men and 8 relationships with therapy for the
women, aged 27–52 HCP and iv) treatment of HIV in
years medication as Iran. The study
motivator. recruited 19
participants over 15
years old with
clinical evidence of
HIV infection, the
ability to
communicate
verbally and a
willingness to
participate with
varying degrees of
education level. Data
was collected
through semi-
structured interviews
and field notes and
analyzed using
thematic analysis.
The researchers did
not justify why
particular ‘topics,

(continued)

413
Table 1 (continued )

414
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
issues, concerns or
events’ were selected

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

for a more detailed
interpretation and go
on to describe a
systematic rather
than flexible
approach. The study
identified four
themes i) choosing to
live, ii) strategies for
adherence iii)
relationships with
HCP and IV)
medication as
motivator. The
studies provide short
quotes to support
their arguments
however, go on to
make
recommendations
around nurses’
involvement in
decision making
which does not
appear to be in the
data. Unfortunately
the text goes on to
describe the
limitations of the
study from a
positivist theoretic
perspective (few
participant, not
generalizable) rather
 than emphasizing the
rich data that the
study collected.
Additionally, the
discussion does not
make any reference

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

to the ‘ongoing’
nature of adherence
which is alluded to in
the conclusion.
Muir-Cochrane Australia Mental health Semi-structured 10 16–24 years old (3 male, Not reported Adherence was A qualitative study that
et al. (2006) interviews 5 female (page 165?), described under the presents adherence in
homeless, have themes of i) homeless young
experienced mental obtaining medication people as part of
health problems, ii) managing their daily struggle.
could speak English medication iii) It’s finding
and were willing to adverse effects of conceptualize
participate medication and iv) medicines adherence
interaction with illicit as a social
drugs. phenomenon
however, the authors
do not state this,
rather their findings
are presented as
discrete themes of
obtaining medicines
(medicines as
currency and
financial), managing
medicines (smaller
packs, keeping
medicines at friends/
relatives’ houses),
adverse effects
(drowsiness is
incompatible with a
lifestyle where one’s
day is consumed with
finding food, shelter

415
(continued)
Table 1 (continued )

416
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
and safety) and illicit
drug (making their
symptoms worse,

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

being out of it). The
study reports that the
experience of young
homeless people
adhering to mental
health medication is
a similar experience
of adherence to other
medicines in other
populations.
Naidoo, Dick South Tuberculosis Pre-interview 15 Purposive sample of Husserlian The authors did not Medicines adherence to
and Cooper Africa questionnaire, spread of men, report a description tuberculosis
(2009) interviews women, 18–57 years, of the experience of treatment in South
between 60 recruited from a medicines adherence Africa is a complex,
and 120 min deprived clinic. but reported the two multi-faceted
Patients with major themes of their experience that is
psychiatric disorders, findings “i) largely influenced
AIDS or HIV were contextual, through psychosocial
excluded individual and and individual,
disease factors disease specific
associated with factors, e.g.
illness experience and symptoms. The study
ii) psychosocial used 15 qualitative
factors related to interviews with men
adherence to and women using
tuberculosis treatment for
treatment.” tuberculosis.
Nguyen Vietnam HIV Qualitative 15 Women with HIV, Not reported Adherence to anti- Qualitative interviews
et al. (2012) interviews average age 29 years retroviral therapy is with 15 Vietnamese
(as part of a old argued as a social women using anti-
longitudinal study) phenomenon of retroviral therapy for
morality. Giving HIV infection. The
women their study positions
 ‘morality back’ and adherence as a social
avoiding ‘morally phenomenon of
bad’ behavior such morality. With
as deviance from adherence to
social norms. medicines considered
‘good’ as it enables

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

social norms, as well
as prescriptions, to
be adhered to and
prevents ‘a bad
death.’ Fulfilling
socially normal roles
such as a ‘good wife’
or a ‘good mother’
described adherence
as social. The
authors argue for
medication regimes
to better fit within
the social lives of
these women.
Sale et al. (2011) Canada Osteoporosis Interviews 21 6 male, 15 female, aged Giorgi Adherence was based 21 at high risk of
65–88 years old, low on decisions fracture and taking
BMD, mediated by the medication for
relationship with a osteoporosis were
health care provider interviewed to gain
and based on a risk- an insight into their
benefit analysis and experience of
was dynamic, adherence. Decisions
changing over time. to take medication
were mediated by the
patient’s relationship
with their health care
professional and
were embodied by a
risk-benefit analysis.
Adherence was
reported as a
dynamic process

417
(continued)
Table 1 (continued )

418
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
which was
continually
changing, based on

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

perceived risks and
benefits.
Sanders America Older adults In-depth 149 70 years old, no gender Not reported No ‘essential’ This qualitative study
and Van interviews data reported, description is given investigated
Oss (2013) however, the authors strategies to improve
state that adherence by asking
medication-taking participants ‘how’
which is embedded they adhered to their
within daily routines medicines. Students
serve an aid to conducted 149
adherence. interviews and data
was analyzed
thematically using
deductive coding
established a priori.
Data was also
analyzed
quantitatively to
deliver statistical
insights. The authors
conclude that
patients embed
medicines adherence
in task-based
routines such as
‘putting my rings on’
or ‘putting the coffee
on’ which, if
disrupted, can
disrupt adherence.
The authors also
reported that more
than 50% of the
 participants required
assistance with
medication
adherence, and the
most common
locations for storing

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

medications were the
kitchen and
bathroom.
Scherman and Sweden Asthma/allergy In-depth, 30 14 women and 16 men, Giorgi The authors did not This longitudinal study
Lowhagen face-to-face between 18 and 62 phenomenography report descriptions investigated
(2004) interviews years old, histories of but presented the adherence in patients
symptoms and a themes from their with symptoms of
positive skin test, analysis which asthma or allergy
range of socio- included i) access to over eight years.
demographic medicines voices N ¼ 30, interviews
backgrounds discomfort and fear were conducted and
ii) body damage identified several
without cure themes; which
(including a) included i) access to
becoming immune, medicines voices
b) self-healing is discomfort and fear
weakened c) bodies ii) body damage
signals camouflaged without cure
d) stigmatized) and (including a)
iii) medicines as becoming immune,
commercial objects b) self-healing is
not aiming to cure. weakened c) bodies
signals camouflaged
d) stigmatized) and
iii) medicines as
commercial objects
not aiming to cure.
The authors aimed to
discover if
experiences of
medicines changed
over time and the
authors conclude

419
(continued)
Table 1 (continued )

420
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
that experiences of
medicines can be

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

stable and so
clinicians must
engage with patients
to reach an
agreement on how
medicines should be
used.
Seng and USA Headaches Interviews 21 Mixture of male and Not reported Optimum adherence to This study investigated
Holroyd female with varying acute headache the behaviors
(2013) symptoms of medication required involved in optimum
headache who had a number of different use of acute
been prescribed at behaviors and headache
least one acute consequently was medication.
headache medication part of a complex Adherence of ‘when
experience mediated required’ medicines
by a number of is often difficult to
facilitators and conceptualize and so
barriers to optimum use is often
adherence. These substituted. The
included i) lack of study calls for better
knowledge ii) measurement and
forgetting iii) self- interventions to
diagnosis iv) adverse improve medicines
effects v) inefficacy use for acute
vi) access vii) role headaches and
viii) social influences concludes that
ix) preference behaviors involved in
alternative adherence/optimum
treatment. The study use are many and
also identified cross- varied, frequently
episode (i) accessible, interlocking to
ii) communication provide a milieu of
iii) limiting therapy) optimum use. The
and episode specific themes identified by
behaviors (self- the study were
diagnosis, included i) lack of
medication choice, knowledge ii)
time, alternative forgetting iii) self-
therapy, repeat diagnosis iv) adverse
administration). effects v) inefficacy

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

vi) access vii) role
viii) social influences
ix) preference
alternative
treatment. The study
also identified cross-
episode (i) accessible,
ii) communication
iii) limiting therapy)
and episode specific
behaviors (self-
diagnosis,
medication choice,
time, alternative
therapy, repeat
administration).
Whilst the findings of
the study are
complex and give us
insight into the
experiences of
medicines adherence
to acute headache
medicines, the
difficulty is
transferring these
findings into a
practical application
for practice or
further research.

(continued)

421
Table 1 (continued )

422
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
Sidat, et al. Australia HIV/AIDS In-depth interviews 10 7 male and 3 female, Not reported The following issues 10 participants that had
(2007) with 100% emerged from the recorded 100%

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

adherence to analysis i) readiness adherence to
HAART recorded to start HAART ii) HAART in the
more than six HAART as a life-line previous six months
months ago iii) 100% adherence were interviewed and
as living longer and the data analyzed
healthier iv) phenomenologically.
relationship with The interviews
HCP v) coping/lack revealed that
of adverse effects vi) adherence is
improved clinical associated with
outcome. longer and better life
and that an ongoing
relationship between
the patient and
physician, coping
and a lack of adverse
effects, as well as an
improved clinical
outcome (measured
by T-cell counts) is
needed to establish
100% adherence.
The authors
conclude that whilst
100% adherence may
be attained, it might
not be permanent,
due to the ongoing
and dynamic nature
of treatment.
Tadesse et al. Ethiopia TB In-depth interviews 26 11 male and 15 female, Not reported Adherence was This qualitative study
(2013) between 18 and 50 described as highlights the
years old with TB mediated by complex nature of
accessing DOTS geographic access to tuberculosis
clinics medicines, treatment in
 concomitant Ethiopia.
financial burdens, Geographic and
traditional healing financial access to
practices, access to services most
social support and influenced
quality of health compliance. The

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

services. authors support a
decentralization
approach to
delivering services to
enable a great
population
geographic (and
financial) access to
medicines.
Tilden et al. Australia Diabetes Case study 1 26-year old female with Giorgi The experience of In this case study the
(2005) early onset type 1 adherence is integral participant, a 26-year
diabetes to the acceptance or old female with early
rejection of self- onset insulin-
identity. dependent diabetes,
was underwent 9
sessions of cognitive
analytic therapy. The
sessions were audio-
recorded and
transcribed and the
psychotherapist kept
a reflexive journal.
The data for the
study was made up
of the transcribed
sessions and the
reflexive journal.
These were analyzed
using a
phenomenological
approach. This
identified two major
themes i) rejection of

423
(continued)
Table 1 (continued )

424
Author Country Context Methods Sample Sample Type of Description of Summary
size phenomenology medicines adherence
the diabetic identity
and ii) integration of

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

the diabetic identity.
In the case study it is
possible to see how a
patients sense of self
dominates the
experience of
adherence, when this
participants sense of
self was poor her
adherence was poor
however, as the
participant
integrated her
diabetic self with her
own sense of self and
this contributed to
an improved
experience of
adherence. It is
difficult to assess the
quality of the case
study as most quality
appraisal tools are
based on the quality
indicators of research
using interviews or
focus groups, rather
than individual case
studies.
 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439 425

Search analytic themes which ‘go beyond’ the primary

studies.20 Data was also collected from each study
As “adherence” is a relatively new term to
to tabulate i) medicines/health issue, ii) methods,
describe medicines-taking behavior, “concor-
iii) sample size, iv) sample characteristics, and v)
dance” and “compliance” were also used to
major findings as shown in Table 1.24
identify articles. Database specific subject head-
ings were used to broaden the search to include Risk of bias in individual studies
appropriately indexed subordinate subject head-
ings. To focus the search to phenomenological Phenomenological and qualitative research is
inquiries “phenomen*” and “DE phenomenol- inherently subjective and often accused of bias. In
ogy” were added to the search strategy. Search phenomenological methodology, researchers are
terms were truncated, such as “phenomen*,” to advised to avoid bias through a process of
include phenomenological and phenomenology. bracketing previously held presuppositions,
The search was limited to the English language. referred to as epoché, prior to the investigation.
As per the CASP Tool, bias was assessed based on
Study selection the documentation of a reflective or epoché by the
Titles and abstracts resulting from the data- study authors.23
base search were reviewed by the first author
Summary measures and synthesis of results
(APR) and full-texts were retrieved for relevant
articles or articles that did not provide enough Whilst there is not a principal summary
information in the title or abstract. The full-texts measure, studies’ key characteristics and findings
of eligible articles were then systematically re- are summarized below in Table 1.
viewed for information about patients’ experi-
ences of medicines adherence. Articles that met Risk of bias across studies
the inclusion criteria were reviewed in their Risk of bias was not assessed formally across
entirety using the CASP Qualitative Research the studies.
Tool.23 Fig. 1 shows the selection process.
Additional analysis
Data collection and synthesis of results
No additional analysis was performed.
Thematic analysis was conducted manually
and with the use of Nvivo10 computer software
[QSR International, Melbourne] to generate
Results
descriptive and analytical findings, according to
the method outlined by Thomas and Harden.20 Study selection
Data was gathered for coding from articles by up-
loading full-text PDF files into an NVivo project, The search strategy identified 47 records of
then coding the text within the PDFs at different phenomenological investigations into medicines
nodes. Text that was included in the analysis adherence. 25 records did not meet the inclusion
related to the findings of the study, including criteria. 22 articles were reviewed in their entirety
participant numbers, evidence tables, quotes, as using the CASP Qualitative Tool and included in
well as reported findings that were within the a thematic synthesis.
text.20 When text in the abstract and discussion
Study characteristics – size, health problem/issue
related to new concepts, this was also collected
investigated, sample characteristics
for coding. Nodes were clustered to generate
descriptive themes and used to generate analytic The majority of studies were set within the
themes. Coding was conducted iteratively by context of HIV,19,25–30 other conditions including
APR and verified through repeated discussions sickle cell disease,31 asthma,32,33 tuberculosis,34,35
with the other authors, who had access to the mental health (including schizophrenia, depres-
full-text papers and NVivo coding reports to inde- sion),36–38 osteoporosis,39,40 and diabetes.41 Two
pendently verify coding decisions. Analytic studies investigated the experience of adherence
themes were generated through additional coding, more generally42,43 and two studies in multiple
reflection and discussion with all authors. diseases, such as patients with life-long depen-
Collected data was coded ‘line-by-line’ to develop dency on medicines44 and headaches.45 Five
descriptive clusters, which were used to generate studies investigated the experience in women
426 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Fig. 1. Study selection process.

only25,29,39,41,42 whilst no studies investigated the Thematic synthesis of findings

experience of adherence specifically in men.
Descriptive themes (results of individual studies)
Sample sizes varied within the studies included
The synthesis of results identified four descrip-
in this review. The lowest sample size was 1, whilst
tive themes. These were i) dislike of medicines, ii)
the highest sample size was 149. The median
survival, iii) perceived need including two sub-
number of participants was 14. In qualitative
themes of a) symptoms and side-effects and b)
research, theoretical data saturation often dictates
cost, and iv) routine (Table 2).
sample size, however, phenomenology appears to
offer flexibility concerning appropriate sample Dislike of medicines. Studies often reported a
sizes and emphasizes the depth of analysis.46 The seemingly pre-predicative dislike for medicines
majority of studies were from the US and Europe engendered through fear of uncertainty,19,25,27,
33,37,38,40,42,44
although there was a wide range of geographical dependency,33,37,45 and illicit drug
locations including the UK,31,32 Belgium,44 Amer- taking tempered only by hope.28,34 Uncertainty
38

ica,19,25–27,37,43,45 Denmark,36,42 Canada,39,40 was often described as experiencing a lack of knowl-

Iran,28 Australia,30,38,41 South Africa,34 Viet- edge19,28,32,34,36,38–40,42,45 and related to patients ac-
nam,29 Sweden,33 and Ethiopia.35 cepting the biological causes of their illness30,33,35,37
 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439 427

Table 2
Descriptive theme extracts
Dislike of medicines “Participants shared predominantly negative perceptions of medicines, and their general view
on the use of these products could be summarized as a preference for avoidance” Hansen
et al. (2009)
“The initial meaning of HIV medications was repugnant to me. It means that I was diseased,
that I was a threat by having this disease and a potential contaminant of others .. Every
time I took those pills, it was a negative reminder that I was HIV positive, and so, I just
wouldn’t bother to take them” Jones (2002)
Survival “Thoughts such as ‘death was the only thing to look forward to’ and ‘not deserving to live’
prevailed, and resulted in more non-adherent behaviour” Enriquez et al. (2004)
“For her, the meaning of both insulin and antidepressant medications is, it keeps you from
dying.” Kwinter et al. (2005)
Perceived need “Keeping it low” was a term used by the women to describe how the pills worked to suppress
HIV viral replication”” Jones (2003)
Symptoms and “Adherence to the program rested on a few factors, such as experiencing relief of the symptoms
adverse effects of the disease” Naidoo, Dick and Cooper (2009)
“Because osteoporosis is usually asymptomatic, patients who had adverse effects from their
medications ended up feeling worse rather than better” Lau et al. (2008)
Cost “Cost of medication was a factor negatively related to adherence behaviour” De Geest et al.
(1994)
“Financial resources frequently impeded access to medications. When money was scarce,
medication was not the highest priority” Muir-Cochrane et al. (2006)
Routine “Most of the participants had strategies to ensure their adherence to the regimen. They
described how they did it by using a routine or schedule, setting an alarm system and taking
drugs. The most common remembrance strategy was to link the drugs with their daily
routines, such as meals” Mohammadpour, Yekta and Nasrabadi (2010)
“Participants made decisions about where to store or place medications on the basis of their
proximity to specific daily routines” Sanders and van Oss (2013)

or adoption of natural or alternative thera- relates to theme i) Dislike of medicines, in that

pies.27,34,35,42,45 Participants reported receiving adverse effects were often considered an inevitable
knowledge,31,39 obtaining knowledge,19,32 and be- part of the experience of adherence.
ing ‘convinced’ to use medicines.30,40 Cost. Six papers reported that the risk-benefit
analysis included considerations of the cost of the
Survival. Survival, living and a readiness to
medicine.32,35,38,39,44,45 The cost of travel to access
adhere were reported extensively in the litera-
the medicine was also conveyed in these studies as
ture.19,25–35,37,39 This was described as patients’
central to the experience of adherence in contexts
‘choosing to live’ and consequently being ready
where access to medicines was limited geographi-
to adhere to treatment.27,28,30 Papers also
cally or financially through insurance-based
described adherence as an experience of life-long
health care models.35,38,44,45
commitment, highlighting the implications of
routine, everyday life on long-term outcomes Routine
such as survival.19,39 . Lifestyle,19,25,27,28,30–32,34,39,40,44,45 time,19,43,45
memory,13,15,19,20,27,40,42,47 and distraction44 were
Perceived needs. This theme relates to the
found to be components of the experience of an
frequently stated experience of weighing up the
adherence routine. Papers reported task-based ac-
advantages and disadvantages of using a medicine
tivities and the storage of medicines as structural
in relation to beliefs about ‘need’27,28,32,33,37–
39,42,45 components of the experience,30,43,45 as well as de-
and was constructed from two sub-themes.
vices that might be used or prepared as part of the
Symptoms and adverse effects. Studies re-
adherence experience.48
ported the experience of symptom relief, ‘getting
better’ and the medicines ‘doing what it was Analytic themes (synthesis of results)
meant to do.’ Papers often recounted a negotia- The descriptive themes were analyzed further
tion between the symptoms of a disease and the to construct analytic themes, which attempt to ‘go
adverse effects of the medicine.27,33–35,38,45 This beyond’ the findings originally reported in the
428 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

studies,20 and deliver insights in the experiences of then that makes it so that you have less of a need
a phenomenon that transcend the contexts of the for medicine. Um. So I really try to avoid medicine,
primary research. The analytical themes identified in every way.”42
were i) identity and ii) interaction. A seemingly pre-predicative dislike of medi-
Identity. Pharmaceutical objects were reported to cines as part of the patient’s identity was renego-
exist within the experience of adherence as tiated by perceptions of need, ultimately leading
embodied actors within a phenomenological life- to the modification of the patient’s identity and
world. Medicines were characterized by their their ability to survive.
efficacy to relieve symptoms; cause adverse effects; You know, I have been on medication now for 8
with costs associated with access; storage require- years and it’s [sic] such a part of my life and the
ments; and how they should be taken. These knowledge, the simple knowledge that if I had not
identifying features of a medicine represented taken my pills I would’ve been dead by now is
structural components of the experience and are enough to keep me taking the pills. I am healthy
as anything. I’d probably never been as healthy
demonstrated in the quotes below.
as I am right now but live and I assume I’d be
Most patients referred to penicillin as a ‘very dead so .30
powerful medication’ and this was demonstrated
in their accounts that they believe that by taking
Identities of patients and of medicines ap-
the penicillin the threat and severity of getting peared to be constructed through interaction
serious infections would be reduced31 with each other and wider social actors; this is
expanded upon below.
For example, one participant considered his bi-
sphosphonate to be a “minor medication . just
Interaction. Participants constructed identities of
more like supplements than medication”40 their medicines through interaction with their
medicines; with health care professionals; with
The identity of the medicines also appeared to family members; the disease and with ‘healthcare
inform the participant’s identity, as below, literature’ (for example blood results and hospital
And I think when Prozac came out somehow the charts).
brand name . I think Prozac became synonymous
Instead of going to bars to find support, they began
with crazy. For a lot of people. And so, people
asking for this from their families, co-workers,
would say, “oh well, they’re on Prozac”37
healthcare providers and other HIV-positive people
As informed by the identity of the medicine, who were felt to be interested in their individual
the identity of the patient emerged as part well-being.26
of the experience of adherence as noted in this Studies also reported interaction with medi-
quote, cines identities through health literature,
Many participants expressed feelings, such as loss In-depth research by participants paralleled the
of identity, loss of roles within personal relation- search for the ‘right’ health care provider and the
ships and embarrassment in relation to their steroid ‘right’ HIV medication, and included activities
treatment. Loss of identity included issues such as such as reading magazines, looking for information
personality changes, feelings of ‘not being them- about HIV treatment on the Internet, attending
selves’, being unable to fulfil their normal role community HIV-related groups and listening to
within the family unit, or being perceived as lectures about HIV disease26
different by friends or family.32
and through interaction with the medicine
Patient’s identity and personal values influ- itself,
enced adherence as they constructed ideals of
right and wrong and how to live a perceived The metaphor that emerged from the data was Life
in a Pill Bottle, which reflected the central focus of
healthy life.
HAART in participants’ lives and describes the
These young women were determined to pursue a complex relationships that evolve between among
healthy lifestyle and considered medicine use to the person, the medications and the virus.27
directly conflict with their health-related values.
One informant felt it was “wrong” to take medi-
These interactions formed such a significant
cine, and shared her holistic view of healthy living: part of the experience of adherence, they often
“If you do the things, if you are healthy in your resulted in changes to the perceived identity of the
daily life, if you are less stressed out and stuff, medicine, particularly in relation to how it should
 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439 429

be taken, which occasionally led to non- osteoporosis medication: “I felt very confident and
adherence, as demonstrated by the quote below, secure once I spoke with her [the specialist] in
detail about my concerns taking the drug. I just
When I got out of the hospital, he (health care pro- didn’t want to take any drug unless it was neces-
vider) was really giving up on me. I thought, ‘Well, sary. But she explained everything so thoroughly
this is not the person I want caring for me’. I and had information to back it up from my charts.
decided, well, I want to live so I need to find a So she convinced me and she said she doesn’t
new doctor, which I did. “I took them (the HIV mainly prescribe drugs either, nor does she like
medications) about two months and stopped taking them herself unless it’s necessary.”40
because I did not like him (health care
provider).”26 Bias was not assessed across the studies.
Interaction between patients’ experience of
symptom relief, adverse effects and their health
care professional is demonstrated further in this Discussion
quote, here the patient clearly modifies their
Summary of evidence
medicines-taking to align with their beliefs about
steroids, The findings from this synthesis suggest that a
I would be on my knees rather than take them, as structural component of adherence is the interac-
time goes on and how I feel within myself, if I tion between the distinct, textural identities of
feel that I’m starting to come round. I will cut social actors. Adherence was experienced as a
them down and maybe the consultant has said dynamic routine, informed by knowledge about
stay on two tablets until I see you in four weeks, the patient and about the patients’ medicines, that
but if I feel okay I won’t stay on those two, I patients gained from wider society. This work
mean I probably will cut them down again, maybe describes important structures of adherence as
I shouldn’t but .32
identity, of patients and medicines, and as inter-
Interaction with expert health care profes- action between the patient, their medicine and
sionals facilitated the construction of knowledge wider social interaction with friends, family, and
relating to the identity of the medicine congruent health professionals. Knowledge and perceptions,
with adherence and consequently informed beliefs constructed from social interaction, enabled pa-
about ‘need,’ this is demonstrated in the quote tients to modify medicines-taking routines, ulti-
below, mately resulting in normalized non-adherence, i.e.
patients ‘got to know’ their medicines to such an
“so then I started to feel better and I started actu-
ally to get involved in more self-help kinds of things extent that they could confidently modify their
and reading stuff that was critical of most of what I medicine-taking routines despite prescribed
had experienced in the mental health system. They regimens.
really try to convince you that the illnesses that you This work supports that conducted using other
have are biological and that if you take the drugs approaches, which identified the importance of
and do what we think you need to do, then you’ll perceived need.49 Horne et al. argue that internal
be okay.”37 negotiations between the patient’s perceived need
The construction of knowledge through inter- of a medicine and the patient’s concerns about
action was often described as ‘convincing’ or adverse effects position adherence as a dichotomy.
‘being convinced’ and related to the identity of This was also seen in the reviewed phenomenolog-
the medicine including it’s perceived need to be ical literature, as perceptions of need and of sur-
taken, and the patients’ identity and in relation to vival were explicitly described in relation to
how they should use medicines. This is demon- medicines taking. The construction of knowledge
strated below, about the safety and efficacy of medicines, and
hence the need of medicines, is also supported
“[the GP] that she automatically put women on
by other work.50 Conceptualizing medicines as so-
bone density medication once they were fifty or
cial entities, as well as biochemical ones, is a well-
over . So I was not convinced to take it because
. I wasn’t convinced that I needed it. Not at supported position and supports the findings of
all.” She was then referred to a specialist who this review.48,51,52 Particularly the work by Ding-
gave her an in-depth explanation of her condition wall and Wilson, which reported the ‘symbolic
and about the medication itself. Following the visit transformation’ pharmacists perform when
with her specialist, this participant decided to take dispensing medicines, changing medicines from
430 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

biochemical to social entities.53 Framing interac- scrutinize information about medicines that pa-
tional relationships as significant parts of the tients may be exposed to from other social interac-
adherence experience are also supported by other tion, such as interactions with family and friends,
work.54,55 This highlights the importance of initial encouraging patients to discern between robust,
support and reinforcement when medicines are scientifically informed medicines’ information
first prescribed and crucially, throughout the life and lay knowledge.
of the prescription. The findings also support the use of phenom-
enology as a theoretical framework and method to
investigate adherence.
Relevance to HCPs and position within adherence
research
Limitations of this review
For health care professionals, these findings
highlight the importance of social interaction on Synthesis of qualitative data is often contro-
constructed patient beliefs, lay knowledge about versial as qualitative findings are often deeply
medicines, and experiences of adherence. In contextualized and so difficult to transfer from
clearer terms, this work highlights patients’ inter- one setting to another. Thomas and Harden argue
action with wider society as domain for novel that “the act of synthesis could be viewed as
intervention development. Within this domain, similar to the role of a research user when reading
health care professionals might consider their own a piece of qualitative research and deciding how
role in generating patients’ perspectives of medi- useful it is to their own situation.”20 They go on to
cines’ identities, seeking to combine their scientific argue that context can be preserved if aims,
expertise with patients’ lay knowledge and methods, sample characteristics and settings of
encouraging patients to ‘get to know’ their med- the manuscripts synthesis are shared as part of
icines over repeated clinical interactions. This the synthesis, as in Table 1. Phenomenologists
might help patients consider the long-term out- are encouraged to present their findings in creative
comes of adherence and ultimately encourage and novel ways to engage wider public interest.
patients to identify adherence within the context Due to this varied nature of phenomenological
of wider societal norms. This work can be located research, it is possible some studies were not iden-
within the adherence research as a novel perspec- tified, such as those presented as art or poetry and
tive of the adherence phenomenon. Adherence not published in journals. Limiting the study to
researchers might use this work to direct novel include only phenomenological studies limits the
intervention development that positions adher- generalizability of the findings, however, this was
ence as a function of wider social interaction. felt an appropriate way to manage differences in
The UK’s National Institute of Health and conceptual frameworks, philosophies and theoret-
Care Excellence’s (NICE) guideline on medicines ical backgrounds to different types of qualitative
adherence56 advocates that interventions are research, maintaining a sense of conceptual con-
tailored to meet patients’ individual needs, with gruity between the included studies. The authors
an emphasis on patients being given an appro- are currently unaware of a method for identifying
priate amount of information to make an or assessing the quality of this type of publication
informed decision. The guideline does not appro- systematically and consequently could not include
priately recognize medicines as tacit social objects this work in the review or thematic synthesis.
and medicines adherence as a social phenomenon, A further limitation of this review is that we
where information to make an informed decision only included studies that explicitly aimed to
is often generated through social interaction investigate the experience of medicines adherence.
with lay sources of knowledge. Policy makers This meant that studies investigating only a part
must consider the wider social determinants of of the experience of medicines adherence, for
adherence, such as exposure to information in example investigating beliefs about treatment, or
the mass media, newspaper headlines, on the studies investigating the broader experience of
Internet and generated through interaction with health care, such as self-management of diabetes,
health care professionals. Interventions to were excluded from the study. It could be argued
improve adherence should therefore utilize these that these excluded papers may have included
forms of social interaction, promoting adherence relevant extracts, however, as their primary aim
through public health campaigns. Additionally was not investigating the experience of adherence
health professionals could highlight the need to per se, these extracts may have been hard to
 Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439 431

identify or contentious in their relevance to 7. Zeller A, Ramseier E, Teagtmeyer A, Battegay E.

adherence. Patients’ self-reported adherence to cardiovascular
medication using electronic monitors as compara-
tors. Hypertens Res 2008;31:2037–2043.
8. Lam WY, Fresco P. Medication adherence mea-
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sures: an overview. Biomed Res Int 2015;2015:12.
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Appendix

434
Search methodology
Database Search terms Years Number of hits Excluded at screening Included
CINAHL MH ‘Medication Compliance’ 2002–2014 33 4 dissertations 13

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

AND phenomenolog* Academic journals 2 not including patients’
experience;
Bender et al. (2011)
Jones et al. (2002)
11 not about experiences of
medicines adherence
Cardoso et al. (2013)
Watts et al. (2002)
Okumdi et al. (2013)
Wang et al. (2014)
Anderson et al. (2010)
Barnes et al. (2012)
Martin et al. (2009)
Anthony et al. (2008)
Mosack et al. (2009)
Chapman et al. (2004)
Deegan et al. (2005)
2 not in adults
Mawn et al. (2012)
Chen et al. (2010)
Not in English
Castro et al. (2012)
MEDLINE “adherence or concordance or 1980–2014 126 93 excluded not about experiences 18
compliance” AND of medicines adherence
“phenomenology*” Suttanon et al. (2012)
[in English, adult (19 yearsþ)] Dean et al. (2005)
Hyland et al. (2014)
Abbasi et al. (2014)
Mudge et al. (2006)
Haas et al. (2012)
O’Brien et al. (2010)
Meis et al. (2014)
Hinckley et al. (2014)
Usher et al. (2013)
Ebert et al. (2014)
Aakhus et al. (2012)
Evangeli et al. (2014)
Morgan et al. (2014)
Mataix-Cols et al. (2002)
Kilbride et al. (2013)
Tovazzi et al. (2012)

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Norlyk et al. (2013)
Petursdottir et al. (2010)
Matwa et al. (2003)
Li et al. (2013)
Chapman et al. (2004)
Okumdi et al. (2013)
Janes et al. (2013)
Fitzpatrick et al. (2011)
Hendry et al. (2012)
Maclean et al. (1982)
Hughes et al. (2011)
Schuler et al. (2012)
Richardson et al. (2010)
Larsson et al. (2010)
Peters et al. (2012)
Flament et al. (2001)
Watts et al. (2002)
Carolan et al. (2012)
Garnweidner et al. (2012)
Cianci et al. (2011)
Falter et al. (2006)
Matthew et al. (2011)
Badlan et al. (2006)
O’Brien et al. (2008)
Porter et al. (2005)
Smith et al. (2007)
Benisovich et al. (2003)
Hale et al. (2010)
Sale et al. (2010)
Mgutshini et al. (2010)
Eldh et al. (2004)
Walsh et al. (2000)
Holmstrom et al. (2005)

435
(continued)
 436
(continued )
Database Search terms Years Number of hits Excluded at screening Included
Whetstone et al. (1991)
Sloan et al. (2009)
Costain et al. (2008)

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Kinder et al. (2009)
De Geest et al. (1994)
Porter et al. (2007)
Rasmussen et al. (2007)
Thomas et al. (1993)
Anthony et al. (2008)
Dickerson et al. (2007)
Zubenko et al. (2000)
Johannesen et al. (2008)
Barnas et al. (1985)
Kim et al. (2007)
Hinson et al. (2005)
Niehause et al. (2005)
David et al. (1990)
Bates et al. (1993)
Miller et al. (1993)
Eldh et al. (2006)
Fogel et al. (1992)
Fu et al. (2005)
Olesen et al. (1990)
Voruganti et al. (2006)
Masand et al. (2006)
De Oliveira et al. (2006)
Tunstall et al. (2000)
O’Toole et al. (2004)
Gibson et al. (2004)
Roberts et al. (1995)
Wyatt et al. (2003)
Forsyth et al. (2000)
Beich et al. (2002)
Bach et al. (1996)
Carlson et al. (1998)
Anstett et al. (1980)
Sheikh et al. (1995)
 Thomas et al. (1994)
Larkin et al. (1982)
Kugelmann et al. (1983)
Jenkins et al. (1988)
Schwoon et al. (1980)
Courtemanche et al. (1989)

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

5 not about patients’ experiences
Fleming et al. (2013)
Sissolak et al. (2011)
Mercier et al. (2011)
Hansen et al. (2009)
Svedberg et al. (2001)
8 duplicates
Naidoo et al. (2009)
DeMoss et al. (2014)
Mohammadpour et al. (2010)
Enriquez et al. (2004)
Scotto et al. (2005)
Seng et al. (2013)
Sidat et al. (2007)
Karamanidou et al. (2014)
2 not in adults
Grossoehme et al. (2014)
Cheung et al. (2012)
PsychInfo “DE treatment compliance” AND 2009–2014 4 1 duplicate 2
“DE phenomenology” Mohammadpour et al. (2010)
1 not about experiences of
medicines adherence
Neal-Barnett et al. (2010)
Sociological abstracts online “medicines compliance,” 1983–2009 9 6 not about medicines adherence 3
“medicines concordance,” [Peer-reviewed and in English] Inclan (2005)
“medicines compliance” and Snortum (1988)
“phenomen*” Jones (2005)
Strong and Huon (1998)
White (1983)
Pless (1984)
Web of Science “medicines adherence,” All years 54 36 not about experiences of 5
“compliance,” “concordance,” medicines adherence
“phenomenological” Nolan (2013)

437
(continued)
 438
(continued )
Database Search terms Years Number of hits Excluded at screening Included
De Portugal (2013)
Peters et al. (2012)
Aakhus et al. (2012)

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Schuler et al. (2012)
Haas et al. (2012)
Falter et al. (2012)
Sissolak et al. (2011)
Crawford et al. (2010)
Chen et al. (2009)
Goodwin et al. (2008)
Orfei et al. (2008)
Johannesen et al. (2008)
Kim et al. (2007)
Rasmussen et al. (2007)
Voruganti et al. (2006)
Hansen et al. (2006)
Niehaus et al. (2005)
Gibson et al. (2004)
Wyatt et al. (2003)
Mataix-Cols et al. (2002)
Forsyth et al. (2000)
Walsh et al. (2000)
Carlson (1998)
Newport and Nemeroff (1998)
Bach et al. (1996)
Barnes et al. (1995)
Roberts et al. (1995)
De Geest et al. (1994)
Solway et al. (1991)
David (1990)
Schwartz et al. (1985)
Mason et al. (1984)
Lieberman et al. (1984)
Kinston (1983)
White (1983)
1 not investigating patients
experiences
Pirie et al. (2007)
5 not in English
박정원; 임화윤 (2012)
Song (2011)
Maeda et al. (2009)
Teike-Luthi (2007)

Rathbone et al. / Research in Social and Administrative Pharmacy 13 (2017) 403–439

Strydon et al. (2000)
7 duplicates excluded
Evangeli et al. (2014)
DeMoss et al. (2014)
Seng et al. (2013)
Parnas et al. (2013)
Sale et al. (2011)
Hansen et al. (2009)
Keck (1996)

439