ReviewAnalyzing communication in genetic consultations—A systematic review
Introduction
For almost 35 years senior figures in genetic medicine have called for more studies investigating the content and process of genetic consultations, describing consultations as a ‘black box’ [1], [2], [3], [4]. Clarke argued that assessing outcome-measures alone will not allow for adequate description and evaluation of genetic consultations [3]. While there have been previous reviews of process studies in genetics [5], [6] none have systematically reviewed their methods or findings. This paper aims to address that gap.
Clients are referred to genetic counseling (GC) for diagnosis, management, support and treatment of genetic conditions [7]. Genetic healthcare covers a range of services including population screening, prenatal diagnosis, and genetic testing for conditions affecting a range of life-stages such as infant or pediatric, adult-onset such as cancer, and susceptibility testing. GC has been described as a ‘hybrid activity’ combining traditional aspects of medical consultations with those from counseling disciplines [8]. GC involves communicating complex and abstract information while supporting clients to make informed decisions about possible testing and adjust to their genetic identity [7], [9], [10]. Clarke describes GC as different to other medical interactions where instead of providing treatments, specialists provide information and support [3]. Debate exists around GC ideals, particularly the principle of ‘non-directiveness’ [11], [12], [13] where clinicians “promote and enhance the autonomy and self-directedness of clients” [14, p. 164]. In Australia, genetic services are mostly offered through tertiary hospitals by a multidisciplinary team that may include clinical geneticists, genetic counselors and social workers. In various countries, these specialists may be referred to with different titles; for the purpose of this review they will all be referred to as clinicians.
With the introduction of new genomic technologies, clinicians may now provide answers to more clients than previously possible [15]. Although increasing diagnostic yield, these technologies introduce novel challenges relating to incidental and uncertain test results [16], particularly how and what to communicate to clients [15], [17], [18], [19].
Complexities of clinician–client relationships can be explored through analyzing medical interactions [20] where a better understanding of this relationship may increase the ‘therapeutic potential’ of medical visits [21, p. 6].
One approach to researching communication processes utilizes quantitative methodologies where ‘talk’ is broadly coded and classified, investigating communication behaviors and patterns. Byrne and Long classified consultations into phases [22] adapting Bales’ coding system, interaction process analysis (IPA), for use in coding medical interactions [23]. Another method is the Roter Interaction Analysis System (RIAS), a widely used tool in medical interaction assessment [24], where speech is ‘unitized’ and ‘categorized’ following a systematic pre-determined coding schedule [21, p. 51–2].
An alternative approach involves a microanalysis using qualitative techniques. Qualitative research generally uses an inductive approach to asks questions such as ‘why?’ and ‘how?’ thereby allowing the researcher to delve deeply into the data and allow meanings to ‘emerge’, often with no preconceived hypothesis [25], [26], [27], [28]. Researchers undertaking this approach are typically sociologists, linguists, and anthropologists. Examples of particular analytical designs include: discourse analysis (DA), conversation analysis (CA), interactional sociolinguistics (IS), pragmatics, and ethnography. Sarangi and Roberts describe this approach as a ‘thick’ description, which “reaches down to the level of fine-grained linguistic analysis and up and out to broader ethnographic description and wider political and ideological accounts…” [29, p. 1]. Qualitative approaches acknowledge the importance of context in understanding complexities and nuances in interactions.
Although debate exists around which approach is most suitable, it has been argued that a combination of qualitative and quantitative approaches can enable a ‘thick’ description to be assessed across larger data sets and potentially become generalizable [20].
Since 1996, three articles have reviewed studies analyzing genetic interactions [3], [5], [6], although these were not systematic reviews.
In 1996, Clarke et al. reviewed GC process- and outcome-based studies, of which only a few had been conducted [3]. The authors contended that GC, centering largely on provision and reception of information, should include assessments different to other medical specialties where outcome-based approaches might be suitable [3]. In 2001, Biesecker and Peters published an overview of GC process- and outcome-based studies [6]. They recommended more process studies in GC, which would assist in defining their profession.
Meiser et al. in 2008 published a critical review of empirical research studies that assessed the process of genetic consultations [5]. They excluded studies with a small sample size or those where consultations had not been audio or video-recorded and concluded that GC is often ‘provider’-driven, with a large proportion of talk being biomedical or educational rather than psychosocial. A limitation of this review was the exclusion of several seminal studies exploring GC principles, due to their sample size [2], [30], [31], [32], [33].
There has been no systematic review of studies that have analyzed interactions in genetic consultations. The aims of this systematic review are to:
- (1)
Summarize key findings from studies analyzing medical interactions between patients and genetic specialists, and
- (2)
Describe the range of methodological approaches used in this body of research, focusing in particular on methods of analysis of genetic consultations.
Section snippets
Design
This systematic review was guided by:
- •
PRISMA statement for reporting systematic reviews [34] and;
- •
Economic and Social Research Council UK guidelines for conducting reviews incorporating qualitative research [35].
Search strategy
Seven electronic databases were searched (Table 1). Reference lists were hand-searched to identify additional relevant studies missed by this search strategy.
Assessment for inclusion of studies
Studies were included if they satisfied the inclusion criteria (Table 2). These articles were independently assessed by two authors
Search outcome
Fig. 1 summarizes the search outcome. The initial search strategy yielded 795 unique articles, from which 74 were retained for full text review, to which were added four identified from other sources. After excluding those that did not meet eligibility criteria, 67 were retained for preliminary analysis. A further 17 were excluded, resulting in a final set of 50 articles, reporting 22 unique studies, for the review [1], [2], [30], [31], [32], [33], [37], [38], [39], [40], [41], [42], [43], [44]
Discussion
This review identified 22 different studies published in 50 articles exploring communication within genetic consultations. These studies have contributed to our understanding of the process of GC and explored many different genetic settings including cancer, prenatal, general, and pediatric consultations.
While studies varied greatly in setting and design, this review identified some overarching themes. Firstly, as previously identified [5] and perhaps not surprisingly, clinician dialog appeared
Conclusions
Twenty-two studies across 50 articles were identified that explored communication within genetic consultations. Many quantitative studies found that clinician dialog dominated and talk was mostly biomedical or educational rather than psychosocial. They explored various topics relevant to GC practice including risk communication and assessing GC principles. Studies used a variety of approaches and design, although the majority of studies (15) used qualitative approaches, and only five studies
Practice implications
This review highlights the complexity and variety of medical communication-based research. Findings from this review can be used to inform the development of future process studies in this area. As this and other reviews have identified [5], [6], more research is needed to investigate if genetic consultations are addressing the needs of clients particularly in terms of the counseling content.
Results demonstrate the importance of context in understanding and interpreting medical encounters.
Conflict of interest
There are no conflicts of interest.
Acknowledgements
The primary author, Jean Paul, is a PhD student and is supported with an Australian Postgraduate Award and was supported by the Victorian Government's Operational Infrastructure Support Program. We are grateful to Jennifer Warburton, Library Research Consultant, at the Melbourne School of Graduate Research, The University of Melbourne, for her consultation with the search strategy.
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2019, European Journal of Medical GeneticsCitation Excerpt :Attending to psychosocial issues is a key component of genetic counseling (Biesecker et al., 2014; Trepanier et al., 2004; Weil, 2003; Eijzenga et al., 2014), and previous research has found emotional connections to be a more important component of counseling than information alone (Edwards et al., 2008). Nevertheless, numerous studies have found that information and provider speech dominate GC sessions (Edwards et al., 2008; Paul et al., 2015). While GCs’ commitment to, and excitement about, the evolving science of genetics is necessary to do their jobs well, it must be balanced with the recognition that their patients may not share their perspective.
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2019, Patient Education and CounselingCitation Excerpt :Clinicians, in turn, provide information about disease and treatment, attempt to assuage emotional distress, and (ideally) facilitate patient involvement in the consultation [6]. In genetic consultations, clinician talk can dominate [7,8] as foreign genetic concepts, and their clinical and psychosocial implications for patients and families, must be conveyed. Information giving must be balanced with genetic counseling and psychosocial support.