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Abstract
Health services research (HSR) is an interdisciplinary field that investigates and improves the design and delivery of health services from individual, group, organisational and system perspectives. HSR examines complex problems within health systems. Qualitative research plays an important role in aiding us to develop a nuanced understanding of patients, family, healthcare providers, teams and systems. However, the overwhelming majority of HSR publications using qualitative research use traditional methods such as focus groups and interviews. Arts-based research—artistic and creative forms of data collection such as dance, drama and photovoice—have had limited uptake in HSR due to the lack of clarity in the methods, their rationales and potential impacts. To address this uncertainty, we conducted a qualitative systematic review of studies that have employed arts-based research in HSR topics. We searched four databases for peer-reviewed, primary HSR studies. Using conventional content analysis, we analysed the rationales for using arts-based approaches in 42 primary qualitative studies. We found four rationales for using arts-based approaches for HSR: (1) Capture aspects of a topic that may be overlooked, ignored or not conceptualised by other methods (ie, quantitative and interview-based qualitative methods). (2) Allow participants to reflect on their own experiences. (3) Generate valuable community knowledge to inform intervention design and delivery. (4) Formulate research projects that are more participatory in nature. This review provides health services researchers with the tools, reasons, rationales and justifications for using arts-based methods. We conclude this review by discussing the practicalities of making arts-based approaches commensurable to HSR.
- arts in health/arts and health
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
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Introduction
The rise of consumer-driven philosophies of policy, research and practice has made the field of health services research (HSR) more amenable to using the qualitative research paradigm in recent years.1 Today, health services researchers seek tools and strategies that are useful for addressing complex problems with consumer-driven healthcare. While there is great potential in employing different approaches to qualitative inquiry, we have experienced a consistent reticence by health services researchers to discuss and use arts-based approaches to study HSR topics. Creative curation has observed little uptake into the inquiry repertoire primarily because of their novelty or a general lack of awareness. But creative forms of inquiry have a number of benefits for the field of HSR. Leavy reiterates the use of arts-based research across a variety of disciplines in the pursuit of outputs that are beautiful, engaging and practical. Furthermore, her work highlights the advantages of this approach: producing new insights and learning, description, exploration, discovery, challenge-based thinking, developing macro-micro connections, evocation and provocation, raising critical thought, building empathy, burning stereotypes, challenging dominant epistemologies, producing diverse meanings from diverse perspectives.2
In our work, we have conceptualised studies that enable researchers to investigate previously unexplored topics in diverse populations. For example, we have conceptualised studies that identify the determinants to adopting telecommunication technologies in the older population using photovoice.3 Arts-based approaches are flexible and can be seamlessly integrated with knowledge translation approaches. In fact, arts-based knowledge translation (ABKT) is an important subfield within arts-based research. ABKT is a process that uses diverse art genres (eg, visual arts, performing arts, creative writing, video, photography, etc,) to communicate research at various points of the process. Researchers within this subfield are keen to contribute to social change by encouraging ‘dialogue, awareness, engagement, and advocacy’.4 For example, author SK partnered with the Six Nations of the Grand River Reserve to conduct a qualitative study exploring elder women’s perspectives around perinatal well-being. She and her colleagues worked with an Indigenous spoken word artist and local film maker to craft a distilled version of the findings in a way that would resonate with mothers, granddaughters and grandmothers in the community.5 Because the sharing of stories is a key pillar for exchanging knowledge among Six Nations women, the end product was a short digital story.6 Although not formally evaluated, community response around this video highlights the potential that arts-based approaches can have for local community health and well-being.
Both of these examples reinforce for us the impact and benefits of using arts-based research in HSR; we believe that arts-based approaches can provide additional nuance and depth that other canonical methods are unable to provide. However, we see the lack of appropriate and consistent use of these approaches in HSR and we believe it is due to the uncertainty and unwillingness among health services researchers to engage in a methodological dialogue about arts-based health services research (ABHSR). There is also a lack of clarity on the various rationales that can support the use of arts-based approaches, and the common challenges that researchers may face during the process. To address these challenges, we conducted a qualitative systematic review of published studies that have employed arts-based approaches to study HSR topics.
Research questions
What are the characteristics of studies that have used arts-based approaches to conduct HSR?
How have authors of these studies framed the rationale for using ABHSR?
What are the limitations and challenges expressed by authors using ABHSR?
Health services research
HSR is an interdisciplinary field that ‘studies how social factors, financial systems, organizational structures and processes, health technologies, and personal behaviours affect access to healthcare, the quality and cost of health care, and ultimately our health and well-being’.7 The goal of HSR is to investigate and improve the design and delivery of health services from individual, group, organisational and system perspectives. HSR is composed of various subfields such as health policy, health systems, health management, health technology assessment, health economics, implementation science and public health. While there is some overlap between HSR and other fields such as social work, nursing and medicine, HSR is distinct from these fields because the primary goal is not clinical in nature. For example, the extensive study of the impact of financing mechanisms on healthcare provider behaviour falls under the purview of HSR.8 Furthermore, the study of optimising the processes through which healthcare professionals engage patients and family in quality improvement initiatives at the hospital level is also an HSR topic.
In 1995, the Institute of Medicine Committee defined HSR as a field that ‘examines the use, costs, quality, accessibility, delivery, organization, financing, and outcomes of health care services to increase knowledge and understanding of the structure, processes, and effects of health services for individuals and populations’.7, 9 Based on this definition, a number of graduate programmes at institutions worldwide focus on training health services researchers. There are also reputable journals dedicated to HSR (eg, Health Services Research since 1966). At least in some European countries and North America, HSR has been the sole focus of granting committees since the 1960s.7 Competencies have also been developed to ensure that health services researchers meet economic demand.10 Notwithstanding the growing maturity of HSR as a field in and of itself, there is a need to examine the various methodologies and methods available to health services researchers. Therefore, as health services researchers, we narrow our focus on the issues within HSR and how the field can better use arts-based research to clarify, examine and challenge HSR topics. By focusing on HSR as opposed to arts-based research as a whole, we were able to provide tailored recommendations for using arts-based research to increase the depth and breadth of HSR investigations.
Methods
Literature search and screening
To balance pragmatism and rigour, we searched four unique databases for this systematic review: MEDLINE, CINAHL, EMBASE and PsychINFO. According to Bramer et al, it is recommended that researchers search multiple databases and using a combination of MEDLINE, EMBASE, Web of Science and Google Scholar to ensure proper coverage. We felt it was important to additionally include CINAHL to capture nursing literature and PsychINFO to capture psychology papers as they are fields that may likely host HSR related to our research objectives. Our search strategy was performed on 30 November 2018. Our search strategy was not limited by study design initially, however, we chose to only include qualitative papers and qualitative components of mixed-methods research, which are necessary components of a meta-synthesis based on content analysis. We retrieved primary, empirical qualitative studies that used any type of an arts-based research approach to study an HSR topic defined by Lohr and Steinwachs.7 The search strategy is available as an online supplementary file. An important conceptual distinction was made between methodology and methods to guide this research. We viewed methodology as a package of guidelines that frame the research process (eg, grounded theory). On the other hand, we conceptualised methods as a specific strategy to perform a step in the research process (eg, focus groups). Based on this understanding, we viewed ABHSR as methods or approaches if they included more than one method.
Supplemental material
Eligible articles were empirical qualitative approaches using any form of descriptive or interpretive arts-based methodology. We determined if an article used an arts-based methodology based on authors’ descriptions and intentions recorded in the manuscript. Because we wanted to focus on more recent articles that have used ABHSR, and there have been other reviews on this topic in the past decade,11 12 we opted to limit our search results to the last 10 years (2009–2019). No restrictions were made on population type or topic as long as they were within the purview of the definition of HSR. Creative arts therapy and other forms of expression therapy that focused on the improvement of clinical outcomes were excluded because their primary objective is not advancing methodological knowledge or insights. It was decided a priori that we would not include grey literature due to the lack of rigour and consistency that would be found in peer-reviewed journal publications. Table 1 shows a complete list of inclusion and exclusion criteria.
Eligibility criteria
Data extraction and analysis
A standard data extraction form was created to retrieve the following details from each eligible article: author, year of publication, title, journal, research objectives, country, setting, topic of research, qualitative study design or analytical approach, type of arts-based approach (eg, photovoice, drama), rationale for choosing arts-based research, reflections on using arts-based research for the article, challenges or limitations with ABHSR and the primary findings. The data extraction form was pilot tested with 10 articles by UM and SK and each verified the other’s data extraction before proceeding to complete extraction for the remaining articles.
Summary statistics were calculated on country, ABHSR methods, qualitative methodology or analytical approach, and research topics or objectives. Since our goal was to extract and analyse authors’ rationales for choosing ABHSR—which were often implicit in included studies—we employed conventional content analysis.13 Conventional content analysis is a qualitative analytical approach that focuses on extracting the context and underlying meanings of published text, particularly when research on the topic is limited. This approach comprises of the following steps: read all data multiple times to obtain a sense of the whole, read the data word by word to derive codes, make notes on first impressions, label codes as they emerge from text, organise these codes into categories and emphasise their links, organise categories into more comprehensible and meaningful categories, and develop definitions for each category and subcategory.13
Findings
In total, 956 hits were retrieved for initial screening, of which 547 were duplicates; 409 articles were reviewed for eligibility and the full texts of 79 articles were reviewed. We excluded 37 articles for the following reasons: not related to HSR (n=30) and not empirical (n=7). In the end, 42 primary, qualitative articles that used an arts-based approach for HSR were included in this review.13–55 online supplementary file 1 depicts the screening and selection process, the descriptive and methodological characteristics of each included study, and summary statistics of descriptive characteristics.
Rationale for using ABHSR
Capture aspects of topic that may be overlooked, ignored or not conceptualised by other methods. In 26 studies, researchers stated that ABHSR captured aspects of a phenomenon that may have been overlooked, ignored or not conceptualised by other qualitative or quantitative methods.13, 14, 16, 17, 19, 21, 23–25, 27–29, 31–35, 37–39, 42, 45, 47, 50, 52, 54 This benefit was characterised by four themes; the first was that ABHSR allowed researchers to gain access to experiences that have more contextual and historical depth.13, 18, 19, 21–24, 28, 29, 32, 33, 35, 56 Depth or thickness in data were a combination of creating opportunities for individualised creative expression;13, 15, 34, 47 making the reflections and emotional processing of participants more concrete;23, 50 exploring topics from various angles;13 and conceptualising experiences that may be considered to be outside the norm.54 For example, in two studies, ABHSR served as a catalyst for participants to represent their communities and communicate their experiences with more specificity about the outcomes of interventions.16, 54
Second, ABHSR enabled researchers to identify and/or confirm problems in communities that may be amenable to collaboration and research.37, 42 ABHSR was perceived as a set of useful approaches for informing the community about the outcomes of an intervention, priority-setting, raising awareness and tailoring interventions.24, 27 For example, five studies stated that ABHSR facilitated an improved understanding of communities that led to interventions that were more aligned with the communities’ needs and preferences.18, 24, 25, 27, 42 One study identified that ABHSR provided better access to data on the processes and mechanisms of change caused by a particular intervention,23 and another study described that ABHSR led to new future visions, unanticipated strategies, and policies that may enhance the lives and health of individuals and their communities.32 ABHSR may also support researchers to gather pertinent information about the potential messages, outcomes and challenges of the recovery process from a serious mental illness.34 ABHSR may create powerful conversational spaces for participants to speak about emotionally overwhelming issues and generate novel analytical opportunities for researchers to learn about what matters to participants and why.24
ABHSR was conceptualised as a compendium of tools that assisted researchers to explore phenomenon in marginalised or underserved groups,18, 19, 25, 27, 31, 33, 34, 39, 47 for example, the mental health of rural senior women,39 individuals with low literacy or poor cognition,30, 32, 33 and children or adolescents with learning disabilities.32 For these groups, ABHSR approaches may serve as a ‘symbolic language’ that gathers experiences, views and perceptions from participants that may be inaccessible through quantitative or other qualitative methods. Moreover, two studies reported that children valued environments that were creative, colourful, child-friendly and welcoming, which ABHSR was more effective in providing than other qualitative methods such as interviews.32, 51 ABHSR also uncovers aspects of a topic that were previously hidden,24, 32, 37 not captured within structured surveys32, 42, 50 or not captured within semistructured interviews.42, 52 Participants in seven studies reported that they preferred using visual methods to describe their experiences rather than through interviews.14, 15, 21, 24, 25, 32, 49
ABHSR allowed investigators to explore traumatic experiences in a constructive and possibly timely manner.33, 39 The third theme pertained to how ABSHR prompted more creativity in analysing participant experiences and perspectives.28, 34 Creativity in data analysis composed of examining metaphors for recovery and mental illness;34 powerful imagery to understand the experiences of drug prevention or surviving cancer;24, 37 and concepts and needs for self-management following stroke.44 ABHSR may provide researchers an ‘insider perspective’,13 or a ‘third eye’37 by rendering opportunities to document the context of the phenomenon in more detail.
The final theme was discussed in three studies and pertained to using photographs, as in photovoice or photoelicitation approaches, to enhance the recall of participants and accuracy of their narratives.13, 19, 23 One study specified that photographs improved recall and accuracy when they were used to improve collaboration between participants.19
Allow participants to reflect on their own experiences. Sixteen studies stated that ABHSR allowed participants to better reflect or understand their own experiences related to the research questions and objectives.13, 14, 20–22, 24, 27, 31, 32, 34, 37, 42, 44, 47, 54 This reflection functioned within the individual, within their family and across the community. With regards to individual participants, studies found that ABHSR approaches were useful for self-improvement;20, 25 engaging in a ‘healing process’ by taking photos in photovoice;25 ‘finding peace’ by facing previous traumatic experiences;25 and enriching self-understanding of previous life events.47 For example, one study found that ABHSR enabled participants to engage in reflecting on their caregiving circumstances and its implications on family life.23 In another study, ABHSR served as a useful mechanism for caregivers to articulate their experiences in a cogent manner.21
Within family, ABHSR provided knowledge to participants that motivated behaviour change and action to improve the conditions of their family;23 communication with family about important problems and difficulties that have been ignored before;23 or encourage family to reflect about the needs of their community.34 For communities, researchers reported that participants experienced increased knowledge and empowerment that promoted community engagement.27, 31, 32, 38, 42, 54 For example, one study reported that at the conclusion of their research project, participants reported a greater knowledge of mental health that increased their capacity to address problems in their communities.38
Generate valuable community knowledge to inform intervention design and delivery. This rationale was presented in 14 studies.16–18, 24, 25, 27, 31, 38, 42–44, 53, 54 The first aspect of this rationale pertained to discussions of community engagement and capacity for change.24, 53, 54 Eight studies found that ABHSR equipped researchers with tools to better understand communities and generate evidence that supported local action and streamlined communication between stakeholders.17, 18, 24, 25, 27, 38, 43, 54 By collaborating with community members in research, the findings and interventions that were designed had greater uptake, acceptability and legitimacy to the end users.18, 23, 42, 44 One study found that their communities of interest preferred visual methods because they more closely identified with the images taken of their communities.38 On the other hand, ABHSR acknowledges that communities are experts in their own lives, and as such, these approaches facilitate community discussion and critical reflection about the research objectives, and enhance knowledge and awareness in community members’ themselves.18, 31, 32, 42
Formulate research projects that are more participatory in nature. In total, 28 included studies discussed this rationale for conducting ABHSR over other methods.13, 14, 16, 17, 19, 20, 22–25, 27, 29, 31–34, 37, 38, 42, 43, 45–47, 51–54 This rationale can be divided into three themes. First, researchers stated that ABHSR confers policy, advocacy and empowerment lenses into research.16, 18, 24, 25, 27, 31–34, 37, 38, 43, 54 Five studies indicated that ABHSR may have a strong impact on policy and practice.25, 27, 31, 32, 38 Impact may result from informing the broader community to encourage behaviour change,27, 54 orienting decision makers and community leaders to attend to and act on findings of research,24, 31, 32, 38 increase the collaborative capacity of stakeholders, organisations, and communities,38, 42, 43 build and sustain partnerships between stakeholders affected by the research,13, 50, 52 and improve collaboration between participants to act to enhance the conditions of their communities.19, 21, 25, 27, 32, 42, 46
The second theme discussed the role of ABHSR in motivating and empowering individual participants to take a more active role in the research process.14, 23, 25, 27, 33, 43, 52, 53 In one study, a more active role of participants was conceptualised as a strategy to minimise attrition.52 On the other hand, an active role also encouraged participants to become leaders in their communities and motivate behaviour change in their family and friends.24, 27, 38, 53 Similarly, researchers found that ABHSR was a more ‘person-centred’ approach to conducting research.13, 23, 33, 47 One aspect of this characteristic is that ABHSR approaches, for example, photos and drama, stimulated important dialogue among participants that continued beyond the purview of the research study.13, 18, 21, 23, 25, 27, 29, 31, 32, 37, 43, 46, 54 Moreover, the findings from ABHSR can be used by healthcare professionals to stimulate dialogue with families about health and wellness.46
The final theme pertained to the how the relationship between researchers and participants may transform through ABHSR. Eight studies found that ABHSR shifted power from researchers to participants.13, 24, 29, 32, 34, 43, 45 This shifting of power had multiple effects on the research process: it enabled the creation of partnerships,13 equipped participants to teach decision makers and researchers about their experiences,32 limited passive forms of engagement and representation,24, 32, 33, 47 and promoted agency in the research process.24, 34, 41, 43, 45, 47, 51, 54 Research was said to be ‘decolonized’ through ABHSR as the knowledge creation was in control of participants.24 For example, participants were responsible for determining the subject, topic and meaning of a photograph in photovoice methods.13 See table 2 for a summary and examples of the aforementioned rationales.
Summary of rationales for using arts-based health services research (ABHSR)
Discussion
This study examined how the rationales for using ABHSR were framed by authors and the limitations and challenges associated with these methods. We were able to classify the rationales for using ABHSR into four rationale domains: (1) ABHSR captures aspects of topics that may be overlooked, ignored or not conceptualised by other methods. (2) ABHSR allows participants to reflect on their own experiences. (3) ABHSR generates valuable community knowledge to inform intervention design and delivery. (4) ABHSR formulates research projects that are more participatory in nature.
(Statistical) generalisability and ABHSR?
The majority of challenges with employing ABHSR expressed by authors was related to the overall goals and epistemology of qualitative inquiry, rather than difficulties in conducting ABHSR in particular. For example, included studies asserted that purposive sampling approaches and eligibility criteria that seek homogeneity limit the extent to which findings could be generalised beyond the included sample—a characteristic that is often conceptualised as the desired outcome of random sampling. Our review found that this expressed limitation possibly reflects a tacit tension between the epistemology of investigators who favour research that is able to make conclusions based on external validity, and the goals of qualitative inquiry that aim for depth, interpretation and theory development.57 We argue that applying the standards of one tradition to another may confer problematic methodological choices; for example, using methods that aim for depth and interpretation but simultaneously seeking conclusions that are statistically generalisable. Negotiating between these traditions in the context of a single study may lead to research that is less rigorous or does not offer important insight into the phenomenon or topic. There are also misconceptions about the nature and conceptualisation of generalisability in the health sciences.58 In the studies reviewed, concerns about generalisability most often refer to its statistical form—also referred to more accurately as external validity. However, there are other forms of generalisability that are seldom discussed in the methodological literature—representational generalisability (ie, similarities and differences with findings from the literature or personal experiences),59 case-to-case generalisability (ie, transferable findings between similar contexts)60 and analytical generalisability (ie, generalisation of concepts and theories between phenomena).56 In HSR, there is an overwhelming focus on identifying and appraising statistical generalisability, and this stems from the positivist paradigms that have dominated the discourses of epistemology and methodology. Formal instruction in HSR often lack details related to alternative, non-statistical conceptualisations of generalisability, possibly reflecting a lack of awareness and debate about the assumptions that underlie the predominant paradigm of research. In a multidisciplinary field like HSR, it is imperative for researchers to acquaint themselves to the terminologies, rationales and operations of other forms of generalisability, and dialogue about their merits and disadvantages for HSR. In particular, it may be more useful for investigators to reframe the generalisability challenges of ABHSR studies that are reflective of non-statistical forms because they are more appropriate and aligned with the goals of qualitative inquiry.
The methodologies and methods of ABHSR
This review identified 42 studies on a variety of topics and published in different countries. The majority of these studies employed visual inquiry methods, such as photovoice and photoelicitation. To our knowledge, multiple reviews have been conducted on visual inquiry methods, for example, photovoice in mental illness research,61 how voices are represented in photovoice research62 and photovoice in public health.16 On the other hand, few of the studies included in this review used other ABHSR methods such as performance inquiry (ie, drama, dance, body mapping). There is a need for studies to employ ABHSR methods beyond visual inquiry methods, especially to capture diverse topics and populations. Other disciplines, particularly the social sciences, have used performative inquiry; for example, poetry as a form of research to evoke personal reactions to a topic under study.63, 64 There is a need for cross-disciplinary communication about methodological practices. Specifically, it may beneficial to tailor the evidence-based approaches from other disciplines for the context of HSR.
Studies included in this review also employed a compendium of analytical frameworks and procedures to analyse data. This observation may indicate that ABHSR approaches may be versatile to a wide range of analytical approaches, which may contribute to an enhanced understanding of phenomena beyond what quantitative and interview-based qualitative research can offer. For example, photovoice was used in studies that employed narrative inquiry,12 and participatory action research.24 These methodologies have important theoretical differences that may influence how findings from the same topic are developed and reported; distinct methodologies will confer distinct lenses and assumptions to view data. Future research should consider how differences in which analytical frameworks are used in ABHSR studies correspond to the format, content and structure of findings.
There is also the question of how ABHSR approaches can be combined with other methods. Photovoice, for example, was conceptualised in included studies as a variant form of interviews whereby photos taken by participants became the prompts for interview discussions. Horsfall et al depicted the strengths and intensity of participant relationships using network mapping and photovoice.24 There is a need to examine the possible innovations and combinations of different ABHSR approaches. Combining different approaches may enable researchers to generate new knowledge through comparison, expansion and complementarity between findings from different methods.65
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Notes
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Bibliography
Footnotes
Twitter @majiduma
Contributors UM and SK conceptualised the study. UM conducted the systematic search. UM and SK completed both levels of article screening, analysed the data, and wrote and revised the manuscript. Both authors approved the final version of the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.