Qualitative assessments

Best Practice & Research Clinical Rheumatology Vol. 21, No. 5, pp. 857–869, 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, King’s College London School of Medicine at Guy’s, King’s 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.: þ44 207 848 5604; Fax: þ44 207 848 5202. E-mail address: [email protected] (H. Lempp). 1521-6942/$ - see front matter ª 2007 Elsevier Ltd. All rights reserved.

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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, social19–24 and emotional19–21,25,26 consequences of RA. Qualitative research methods lend themselves more to inquiry into the details of people’s lives to provide deeper understanding and meaning about what really matters both to recipients21,27–29 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 people’s lives and that scientific–medical 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’.35–37 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.

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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 sciences39–41, especially semi-structured or in-depth interviews42,43 with individuals21,27,44 or groups20,45–47, 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

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inquiry, drawn on interpretive theories (e.g. hermeneutics ¼ interpreting human action; phenomenology ¼ 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 people’s 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.

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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 RA19,71–73 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)

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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 people’s 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.80–83 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

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qualitative papers and publications on quality-of-life measurements have highlighted particularly important clinical, psychosocial and communication issues, as summarised in Table 3.23,27–29,44,46,47,85–90 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 practice31,91–93, 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 researcher’s 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 researcher’s 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

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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 patient’s 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.

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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.

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