Best Practice & Research Clinical Rheumatology

Vol. 21, No. 5, pp. 857869, 2007

doi:10.1016/j.berh.2007.05.002
available online at http://www.sciencedirect.com

4
Qualitative assessments
Heidi Lempp *

MSc, PhD, RN

Senior Qualitative Researcher

Gabrielle Kingsley

BSc, MBChB, PhD, FRCP

Reader in Rheumatology
Academic Department of Rheumatology, Kings College London School of Medicine at Guys,
Kings and St. Thomas Hospitals, Weston Education Centre, Cutcombe Road, London SE5 9PJ, UK

Current NHS policies emphasise the involvement of patients and place them centre stage in the
evaluation of health care. The unique experiences and views that patients can bring to health
service research can be understood as complementary to staff skills. Qualitative research
methods in particular provide a distinctive approach to recording and interpreting patients
perceptions and opinions; these insights can be used when developing and evaluating new treatments and services.
Key words: evidence-based practice; health service research; qualitative research;
rheumatology.

INTRODUCTION
The historical separation of quantitative and qualitative research has seen some
rapprochement in recent years, as qualitative health service research1,2 has gradually
become more prominent in mainstream medical journals.3 Qualitative research is
now given explicit consideration in its contribution to the evaluation of health care4,
and the collaboration between the Cochrane (quantitative) and Campbell (qualitative)
databases is a further step in this direction (see: http://www.joannabriggs.edu.au/cqrmg/
role.html). One reason for this shift is the recognition that diverse types of evidence
have the potential to contribute to systematic reviews of health service research5,6,
with reference to both patient/service users7,8 and health-care professionals.9 Therefore, both qualitative and quantitative evidence can be informative within a multipleperspective paradigm that attaches importance, for example, both to staff-rated and
* Corresponding author. Tel.: 44 207 848 5604; Fax: 44 207 848 5202.
E-mail address: heidi.k.lempp@kcl.ac.uk (H. Lempp).
1521-6942/$ - see front matter 2007 Elsevier Ltd. All rights reserved.

858 H. Lempp and G. Kingsley

to patient-rated outcomes.4,6,8,10,11 Such an approach allows for a clearer patient focus

in research into chronic conditions such as rheumatoid arthritis (RA).
Past seminal qualitative studies by Goffman12 or Glaser and Strauss13 have been
influential in health-care policy in relation to mental health and palliative care, respectively. Other, more recent studies, for example concerning consultation styles in the
private and public health sectors14, or the impact of electroconvulsive therapy on
patients with mental illness15, have also highlighted important issues in relation to
communication and providing information to patients and service users.
This chapter argues that patients who experience complex lives with life-long conditions deserve more direct prominence in research than they have had in the past.
This is because people who have a chronic and disabling condition (for example RA)
can develop expertise about their illness and the impact it has on their bodies and
lives. The traditional medical model9,16,17 cannot be used alone but needs to move towards a more patient-centred approach, which includes multifaceted management9,16,18 and pays attention to the physical19,20, social1924 and emotional1921,25,26
consequences of RA. Qualitative research methods lend themselves more to inquiry
into the details of peoples lives to provide deeper understanding and meaning about
what really matters both to recipients21,2729 and to the providers of care.30,31 Moreover, qualitative research can offer an important link between medical science, clinical
practice, ethics, and to patients and health-care professionals experiences.
In summary, we will suggest that no single research method can capture all aspects
of peoples lives and that scientificmedical knowledge alone cannot always provide the
most relevant information when caring for and treating patients.11,32,33

METHODOLOGICAL CONSIDERATIONS
Qualitative and quantitative methods
There has long been an emphasis on quantification in natural sciences, and this explains
some of the uneasiness in the relationship between medicine and the humanities. This
derives from the different philosophical approaches of positivism (the natural science
approach) and interpretivism on how knowledge is generated.34,35 Interpretive social
scientists stress that the meaningfulness of social life is central to their approach to
knowledge. They reject the goal of producing explanations based on inferences between causal relationships of measurable social phenomena, and many argue that
the two different paradigms lead to quite distinct research methodologies.36 Moreover, they argue that the social world cannot easily fit into objectified criteria, and
they rely mainly on qualitative methods, for example, qualitative interviews or observations. This difference in methodology has sometimes been characterised in terms of
polarities, such as objective and subjective orientations, or hard versus soft data,
each claiming to be nearer to the truth.3537
The term qualitative implies an emphasis on the qualities of entities and on processes and meaning that are not experimentally examined or measured in terms of
quantity, amount, intensity and frequency (ref. 38, p. 8). This means that the focus
of the research is on how social processes are created38 and what meaning they
have for people, especially within specific contexts. Within the area of health care,
qualitative research can help to understand the way in which interventions are experienced by all those involved in the development, delivery and receipt of care.

Qualitative assessments 859

By contrast, the emphasis in quantitative studies is to stress the importance of measurement and analysis of causal relationships between variables, rather than processes.34 Silverman39 contends that, unlike positivists who claim that their
approach will result in a mirrored reflection of the social world qualitative research
studies can generate insights into the world of people and the meanings linked to their
individual experiences. The distinction is therefore a focus on knowing (quantitative
research) rather than understanding (qualitative research). Moreover, observational
epidemiological studies can also generate understanding, especially when randomised
controlled trial (RCT) designs prove unnecessary (e.g. immobilisation of fractured
bones: intervention is effective and unknown confounding factors can be ignored);
inappropriate (e.g. use of hormone replacement therapy to prevent femoral fractures:
the outcomes of interest are far in the future); impossible (e.g. random allocation of
patients to intensive care versus ward care due to ethical objections) or inadequate
(e.g. privately funded patients are almost entirely absent from RCTs in the UK and
their exclusion might make included participants atypical or unrepresentative).33
The use of observational studies can therefore also be viewed as a valuable complementary approach both to experimental and to qualitative methods (Table 1).
People living with a chronic condition lead lives that do not easily fit into predetermined categories, as they continually have to adjust to and incorporate their changing
physical and psychosocial circumstances. This means that a wider application of research skills embracing quantitative assessments of RA and qualitative accounts of
the lived experiences of patients and their families can produce a more accurate
and nuanced picture: one that gives value to the views and opinions of both patients
and health care professionals. This complementary approach will be further explored
in the fourth section of this chapter.
Different methods of gathering data
A range of specific qualitative methods is used to generate data and findings. Interviews are among the most widely used method in the social sciences3941, especially
semi-structured or in-depth interviews42,43 with individuals21,27,44 or groups20,4547,
including the use of participatory48,49 and non-participatory observations50,51, using
field notes52 and the utilisation of open-ended survey questions.53 What these various
methods have in common is that they are naturalistic (in everyday contexts) in their

Table 1. Comparison of qualitative and quantitative research methods.

Issue addressed
Unit of analysis
Results of analysis
Scale
Perspective
Stance of researcher
Research design
Focus of inquiry

Qualitative research
method

Quantitative research
method

Words
Descriptions
Small-scale
Holistic perspective
Researcher involvement
Not fixed
Subjective impact of illness on patient

Numbers
Statistics
Large-scale
Specific focus
Researcher detachment
Predetermined
Extent and range of chronic illness
in the community

860 H. Lempp and G. Kingsley

inquiry, drawn on interpretive theories (e.g. hermeneutics interpreting human action; phenomenology analysis and description of everyday life or experiences) and
are systematic in the data collection of textual material through interaction with people. The researcher is an active participant in the development of knowledge54, has
a focus on the importance of peoples experience over time, and accepts that scientific
reality might look different from different perspectives (relativism).11,32 Conducting
qualitative research is not a linear or pure undertaking but is rather a complex interplay of context, participants, the conduct of research study, and the researcher. This
intricate mixture accepts that there are diverse views about what makes the social
world go round.55
Data analysis
The analytical process begins during data gathering. The identification and refinements
of thematic categories play a major role in qualitative analysis. They engender a vast
amount of data in the form of text, e.g. field notes (from observations) and transcriptions (from interviews), that needs to be understood and interpreted in depth and
detail. Given the diversity of data types, a range of different analyses of data inevitably
exists, assisted by qualitative computer software packages56 (e.g. NVivo) and grounded
theory approaches.57 Various data analysis techniques can be employed, depending on
the aim and scope of the research study, singly or in combination: content analysis
(what people say)58, discourse analysis (how interviewees talk about events/experiences)59,60, conversation analysis (record patterns of conversation to identify roles,
social relationships and power relations)61 or narrative analysis (looking for the structure and underlying process in a story by adopting the whole or the part of a narrative
as the focus, or identifying motives, images, structure or coherence).62
Textual data are usually analysed inductively, but increasingly also deductively58, by
generating emergent categories or themes, which will be used to identify and to
explain the diversity of experiences. In this way, qualitative research uses analytical categories to describe and explain social phenomena. Negative or deviant instances will
be included in the analysis so that emerging explanations can be qualified and modified.63 Single counting of events, issues or characteristics arising from the data can
strengthen the evidence and make claims more convincing (but not in a statistically significant sense) and can assist in the generalisability of findings.64 Thus, presenting the
data can enhance a consistent and systematic rigour in the analysis and steer away
from anecdotalism or providing solely personal impressions.65,66
SCIENTIFIC ISSUES
Evidence-based medicine is based on mainly quantitative outcomes, in particular RCTs,
which are considered to be the gold standard of evidence for treatment efficacy.67,68
Their principal strength is the ability to control for confounding factors. However,
a number of new developments in medicine have challenged this emphasis68,69 and
its assumptions about what constitutes evidence.6,8,10,70 These issues have become especially relevant to a number of conditions such as RA19, neurological or long-term
conditions68, or mental disorders8 where longitudinal observational studies or qualitative research techniques might be especially informative for important unanswered
questions.

Qualitative assessments 861

For these reasons, a new typology for research and evidence was recently developed
in the UK: the National Service Framework (NSF) for Long Term Conditions.68 This incorporated the views, experiences and perceptions of patients, carers, families and
health-care professionals on an equal rather than a hierarchical basis. This approach
opens up the range of outcomes relevant for chronic disease management by using
the application of qualitative, quantitative and mixed methods studies (see Table 2).68
The recognition of a broader methodology can therefore positively contribute to
multi-perspective research, by which various sources of evidence of patients, families/carers, scientists and health-care professionals are validated and integrated.8 The
complex impact of chronic diseases has also been given importance by paying attention
to both staff-rated and to patient-rated outcomes. This in turn allows a greater patient
focus in research upon chronic disorders such as RA19,7173 or mental disorders.74 In
these ways, effective health-care delivery can be achieved when clinical decisions are
made through reaching a balance between research evidence, professional clinical
judgement and patient preference.75 Moreover, health service research can also include participation of patients or service users in health service planning10, standard
setting76 and evaluation.10
POTENTIAL TO BLEND RESULTS OF QUANTITATIVE AND
QUALITATIVE METHODS
The quantitative research paradigm in medicine now increasingly considers qualitative
research methods as a way to broaden the scope of evidence-based medicine.11 This
recognition has gradually led to a growing number of quantitative and qualitative
approaches that are complementary, for example in relation to RCTs for health interventions.33,77 In this way, the combination of both research methods has achieved: (1)
translating scientific results into realistic everyday clinical practice and patients lives11;
(2) helping to answer questions about the impact, appropriateness and acceptability of
interventions15; (3) identifying barriers for clinicians and patients to adopt scientific
results78; and (4) combining the results of qualitative assessments with physiciandeveloped outcome measures that can influence disease management.8
When qualitative and quantitative approaches are combined, the methods can also
be applied sequentially.32 Morgan outlined the helpful Priority Sequence Model, which

Table 2. Typology of evidence used by the National Service Framework for long-term conditions.
Evidence
Expert-based evidence
Opinion/experiences
Research-based evidence
Primary research
Secondary research
Reviews
Quality assessment
Applicability
Adapted from Ref. 68, p. 902.

Data
Of patients/users, carers or professionals
Quantitative, qualitative or mixed method
Meta-analysis or other secondary analysis
Systematic or other descriptive reviews
Rated on five parameters (scored out of 10)
Direct (evidence from within long-term neurological conditions) or
indirect (extrapolated evidence from other conditions)

862 H. Lempp and G. Kingsley

relies on the principle of complementarity.79 First, a decision about the priority of

a qualitative or quantitative method is taken; next, the sequence determines whether
the complementary method will serve either as a preliminary or as a follow-up
method. These two decisions yield four basic research designs:
1.
2.
3.
4.

preliminary qualitative methods in a quantitative study

preliminary quantitative methods in a qualitative study
follow-up qualitative methods in a quantitative study
follow-up quantitative methods in a qualitative study.

Thus, combining both research methods has the potential to evaluate health care in
more depth and detail, to inform new research, to improve the scientific basis treating
patients and providing services33, and to bridge the gap between scientific evidence
and clinical practice.11,34
ISSUES RELATED TO PATIENTS WITH RA AND TO HEALTH-CARE
PROFESSIONALS
Having discussed the methodological and scientific ways in which qualitative research
can positively add to medical knowledge42, what qualitative assessments in RA care
are relevant and informative? The notion of quality refers here to hallmarks, features,
character, nuances, values and norms, complexity or nature of the phenomenon
under study, . but does not signify quality in the sense of good, adequate or excellent
(ref. 37, p. 398). Qualitative methods are useful when research questions involve understanding, describing or learning from particular human and social experiences; including
communication, events, thoughts, views, opinions, perspectives, perceptions, expectations, meaning, behaviour, dynamics, attitudes and processes that relate to interaction,
relations, developments and interpretations, all of which are part and parcel of clinical
knowledge.11,34 In other words, gathering data within the qualitative research paradigm
can often access tacit dimensions that aim to access the unquantifiable aspects of peoples lives, reaching parts that questionnaires cannot address in depth or detail.
Such approaches give patients, carers, family members and health-care professionals
a direct voice and provide first-hand observations or comprehensive accounts that can
uncover important aspects of their lives when caring for somebody with a long-term
condition. Moreover, the trend in chronic health care is to stress the importance of
the participation of patients in their own care, based on the expertise from personal
experiences and self management approaches a fundamental shift compared to the
way in which chronic diseases were managed in the past.8083 Indeed, providing patient-centred rather than practitioner-centred care is fully in line with current
health-care policy.81 When both patients and health professionals perspectives are
known and understood, common ground can be reached leading to successful clinical
outcomes.37 In brief, health-care professionals need to understand the patients, not
only the disease.84
RHEUMATOID ARTHRITIS: SPECIFIC ISSUES
It appears, from reviewing the medical literature, that qualitative research in rheumatology is currently marginalised. The majority of specialist journals publish
almost entirely quantitative studies. Within rheumatology, only a small number of

Qualitative assessments 863

qualitative papers and publications on quality-of-life measurements have highlighted

particularly important clinical, psychosocial and communication issues, as summarised in Table 3.23,2729,44,46,47,8590 Their findings have the potential to raise awareness among health-care staff of what matters to patients and how they manage to
cope with RA, including how qualitative evaluation can help refine findings from
established clinical assessments.
Other clinical fields, such as general practice31,9193, appear to have paid more attention to findings from qualitative research, for example in relation to consultation process/style or medication adherence. However, the rheumatology literature contains
a number of interesting illustrations where evidence from quantitative surveys can be
matched with detailed qualitative accounts derived from patients, and vice versa, e.g.
in relation to mental distress19,27,73,94, the impact of anti-TNF (tumour necrosis factor)
treatment on patients46,95, validation of a patient satisfaction questionnaire85,96, and the
adaptation of a RA disease-specific quality-of-life instrument.90,97
LIMITATIONS OF QUALITATIVE RESEARCH
In common with quantitative methods, qualitative approaches also have their limitations in terms of validity, the researchers role, the data-gathering process and
academic impact. In relation to validity, qualitative studies are less representative
and their findings are less generalisable to the wider population, but are more applicable in their descriptions or theories to specific settings or context.32 As in quantitative studies, researchers have to guard against bias in relation to the sampling,
interview or observation process, analysis and selective presentation of data.65 A number of sociological papers have pointed out that, particularly in the context of medical
encounters, discrepancies can emerge between the information that participants provide in public or private.98 The researchers social role, e.g. gender, ethnicity, able/
disabled, or social status, might also influence the quality of data collection.99 For
people taking part in qualitative studies, data gathering might be experienced as intrusive or can make it harder for interviewees to withhold information.
Previously published sociological100 or psychological73 studies have received scant
attention from health-care professionals. They could have raised greater awareness
amongst health-care staff in their consultations, for example regarding what patients
concerns are apart from the medical diagnosis (coping with stigma, relationship difficulties, loss of personal, material and social resources, social isolation, or medication
concordance, etc.) when living with RA.
It can be difficult to present the textual material (the outcome of qualitative research) within the short word limits often required by journals.32 High-impact,
peer-reviewed journals also seem to place less emphasis on qualitative work, possibly
influenced by the largely quantitative background of the reviewers, who might, for example, judge qualitative studies by quantitative research standards, although there are
different schools of qualitative research design and analysis. Finally, qualitative studies
contribute less, at present, to systematic reviews and meta-analyses.
SUMMARY
Qualitative research can contribute to the expanding of the boundaries of traditional
empirical research and to improving patient care through more detailed understanding
of how the medical condition and related treatments are experienced by all

864 H. Lempp and G. Kingsley

Table 3. Relevant qualitative papers in rheumatology and their outcomes.

Paper (ref. no.)
23

Haugli et al

Lempp et al27

Lempp et al28

Simpson et al29

Donovan and
Blake et al44

Marshall et al46

Carr et al47

Arthur and
Clifford85
Mann and Dieppe86

Ryan et al87

Woodhead et al88

Greenwood et al89

Tammaru et al90

Patients and location

Patients with RA and
fibromyalgia in Norway

Study objective

Outcomes assessed

What do patients perceive

as important in their
medical encounters
Personal experiences of
living with RA and impact
upon lives
Views of patients with RA
on quality of health care
received in primary and
secondary care
What are the patients
experiences living with a
chronic disease such as RA

Patients with RA
to be seen as
individuals
Patients with RA in UK
Patient changes
of identity in public
and private
Patients with RA in UK
Explanations given,
opinions respected,
attention paid to
psychosocial issues
Patients with RA in UK
Support by friends,
family and health-care
professionals are
important to patients
Inflammatory
Examine commonly used
Doctors ability to
arthropathies in UK
methods of reassurance by acknowledge patients
clinicians and their effect
perspectives;
on patients
reassurance
not always helpful
Patients receiving
Explore patients
Improved physical
treatment with anti-TNF
experiences of and views
function and well
about anti-TNF treatment being
for RA in UK
and the BSR BS process
Patients with RA in UK
Explore patients
Pain and mobility
perspective of
outcomes in RA
Patients with RA in
Determine expectations
Empathy, information
primary and secondary
and preferences for care
provision, continuity
care settings in UK
of care
Patients with RA and
Learn about effect of RA
Shared illness
their partners in UK
on couples relationships
management, the ill
partner being in
charge, conflict over
management
Patients with RA in UK
To identify factors which
Self-management
of symptoms
influence control over
symptoms of RA
Patients with osteoarthritis Patients experiences of
Pain and immobility
from 3 orthopaedic
outcome from a total knee
surgeons waiting lists
replacement
in UK
Patients with RA pre- and Can RAQoL function both Extended RAQoL
postbiological therapy
as group outcome measure provide a valid and
in UK
and identify individual
sensitive score for
patients concerns
monitoring group
outcome
Patients with RA in Estonia Investigate the
Assessment of
appropriateness
appropriateness of the
of RAQoL in Estonia
RA QoL instrument

BSR BS, British Society for Rheumatology Biologics Registry; RA, rheumatoid arthritis; RAQoL, rheumatoid
arthritis quality of life; TNF, tumour necrosis factor.

Qualitative assessments 865

concerned. Qualitative and quantitative research strategies should no longer be seen

as in conflict. Rather, multi-method approaches can be more informative than each
method alone, in other words, one technique cannot fit all. For chronic disease management, this combined perspective offers a greater focus on patients, their families
and health-care professionals, and studies in disease management and health-service
delivery in rheumatology have so far received too little attention in health research
in the UK.

Practice points






Patients own experiences of living with a chronic illness are important.

Qualitative research methods can capture patients complex lives well.
Qualitative and quantitative methods can complement each other well.
No research method can fit all purposes.
A multi-perspective paradigm has its place in chronic disease management.

Research agenda
 Obtaining a dual perspective from recipients (patients) and providers (staff,
carers) of formal and informal care can help to implement more balanced
and relevant multi-disciplinary, patient-centred care.
 Health service research, as a multi-disciplinary research discipline, can reflect
mixed research method strategies.
 Patient-led research can further contribute to enhancing health service research in rheumatoid arthritis and other chronic diseases.
 Studies in disease management and health service delivery in rheumatology
have received little attention in health research in the UK.

ACKNOWLEDGEMENT
The support of the Arthritis Research Campaign for this work is gratefully
acknowledged.
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