Ethical considerations of qualitative non-therapeutic research on people with obsessive–compulsive disorder: an overview

Informed consent and participants’ competence

Informed consent is a critical step when conducting research involving vulnerable individuals. In this process, an individual who is willing to participate in a research is well-informed and fully aware of all the procedures the research is intending to accomplish. In addition, there is a step that guarantees the dignity and autonomy of the participants. However, obtaining informed consent can be challenging at times due to factors involving culture, religion, interview locations, and the complexity of the research structure itself.

Unlike in quantitative research, it is almost impossible to fully inform the participants about the essence of the study at the beginning of any qualitative research due to frequent changes in the methodologies adopted (Ford & Reutter, 1990). Therefore, the need for varied methods of data collection in any research project requires the careful consideration of ethical principles. Additionally, because ethics are subjective (Schwandt, 1994), participants need constant mediations and negotiations to participate in the research (Houghton et al., 2010), and a continuous reminder that they have the right to withdraw their participation at any time. This is a procedure called “process consent” (Munhall, 1988). Here, consent is a continuous process in which the participants remain aware of the potential benefits and risks of the research so that they are able to play a joint role in the decision-making process regarding their continued participation (Usher & Arthur, 1998; Jokinen et al., 2002; Houghton et al., 2010). It is of huge importance that mentally ill and psychologically disturbed individuals maintain their dignity as autonomous persons when involved in any type of research; thus, the need for the informed consent process is evident for these individuals. In fact, one benefit of this process is the observed therapeutic effect that it brings to the psychiatric patients participating in the research: the mutual respect between the investigator and participant may enhance the patient’s self-esteem and reduce feelings of incompetence (Brabbins et al., 1996).

With this being said, the actual application of some ethical procedure considerations throughout the process of ensuring an ethical study may sometimes be harmful for participating psychiatric patients. The unnecessarily overwhelming emphasis on the protection of the vulnerability of some psychiatric but non-psychotic patients, such as those with OCD, who may be competent enough to consent might unwittingly emphasize the stigma of mental illness, and further negatively affect their already damaged self-esteem (Usher & Holmes, 1997).

In fact, the level of vulnerability may not be exclusively related to mental illness, as vulnerability in psychiatrics simply means the absence of a sound mind and the inability to make autonomous decisions (Usher & Holmes, 1997). Research has shown that the claim that all psychiatric patients are vulnerable and thus are not able to fully provide consent was ill-founded. A study by Kane & Schwartz (1981) compared the abilities of hospitalized psychiatric and non-psychiatric patients to make a decision regarding exposing themselves to high-risk studies, and it found that psychiatric patients refused to participate in high-risk studies more often than non-psychiatric patients did. Hence, the level of psychopathology may not be a definite indicator of a patient’s capacity to consent to research (Kane & Schwartz, 1981). Therefore, under these circumstances, an essential question emerges: Do individuals with OCD meet the required competence levels to give consent to participate in a qualitative study?

Competence is a normative concept that does not necessarily define the patient’s condition per se; rather, it gives the patient the power and eligibility to act upon a given task. When a patient is considered incompetent, he or she is not expected to meet the legal and ethical requirements for informed consent (Ruissen et al., 2012). Thus, competence is an essential pillar of valid informed consent and the lack of it raises many challenges. With this, competence in people with OCD has long been a slippery concept that lacks a straightforward answer.

The literature is filled with debate about the competence, cognitive abilities, and treatment decisional capacities of people with OCD. In fact, there are many studies that have explored several types of cognitive deficits and their locations in the brain of individuals with OCD (Boldrini et al., 2005; Shin et al., 2014; Kamaradova et al., 2016). However, there are almost no studies that clearly determine whether or not people with OCD are cognitively competent in a general sense, and what the ethical and legal consequences are for their participation in qualitative research for non-therapeutic purposes. For instance, Ruissen et al. (2015) explored the concept of competence from the perspectives of OCD-affected individuals and mental healthcare professionals regarding the patient’s capacity to agree to receive appropriate treatment. From an OCD patient’s perspective, competence involves recognizing and effectively navigating conflicting values and contradictory beliefs; that is, competence depends on the OCD-affected individual’s ability to distinguish between normal and pathological behaviors related to general values in life as well as their ability to maintain balance in life. Specifically, while values like cleanliness, order, and perfectionism are not essentially pathological, OCD patients with compulsions associated with such values may struggle to recognize which related behaviors are normal or pathological. Conversely, from a mental health care professional’s perspective, competence is conceptualized in cognitive terms, such as understanding, reasoning, appreciating, and expressing a choice, as well as the individual’s inability to “live a good life” due to the burden of their disorder (Ruissen et al., 2015). However, these studies still do not answer the question of whether or not people with OCD are autonomously competent enough to make decisions unrelated to treatment (i.e., participating in non-therapeutic qualitative research).

The fact that people with mental disorders are always expected to have diminished cognition and intellectual impairments does not necessarily indicate their definite inability to consent (Koch et al., 1996; Amer, 2013). With psychiatric patients, competence to consent is similar to a person being able to consent to one task at a certain time but not to another (Usher & Holmes, 1997). In addition, according to the MacArthur Competence Assessment Tool (MacCAT) (Grisso & Appelbaum, 1998), four abbreviated elements of the term competence have been noted: (1) the ability of “expressing a choice”, (2) the ability of “appreciation” of significant information beneficial to the patient’s condition, (3) the ability of “reasoning” when making a decision, (4) and the ability of “understanding” relevant information (Ruissen, 2015).

Nevertheless, the MacCAT has been criticized for its cognitive bias (Grisso et al., 1995), with one controversial element being the patient’s “appreciation”. This is defined by Grisso and Appelbaum (1998) as the patient’s ability to recognize and acknowledge the disorder, its main symptoms, and the benefits of treatment. However, this definition of “appreciation” has been challenged in that other non-authentic pathological values and ambiguity in identity, such as those found in anorexia nervosa disorder, might affect the competence more than the cognitive functions assessed by the MacCAT (Tan et al., 2010; Meynen & Widdershoven, 2012; Ruissen et al., 2015). Therefore, it has been suggested that the definition of “appreciation” ought to be replaced with “the acceptance for the need for care” or “insight” (Tan et al., 2006). However, one more complicated issue emerges.

Competence and insight in OCD do not overlap, and the diagnosis of OCD as a non-psychotic disorder does not always necessarily mean that an OCD-affected individual is competent (Ruissen, 2015) as studies have shown that OCD-affected individuals with adequate insight can be incompetent, and the MacCAT may give false-positive outcomes. To demonstrate, according to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), three subcategories of OCD are specified: (1) OCD with good or fair insight in which the individual is able to recognize that the obsessive–compulsive thoughts are not true; (2) OCD with poor insight wherein the individual thinks that the obsessive beliefs are probably true; and (3) OCD with absent insights or dysfunctional beliefs in which an individual is convinced that the obsessive thoughts are true (American Psychiatric Association, 2013). Nevertheless, due to the insufficient studies on individuals with OCD with poor insight, this group of patients is usually considered clinically competent without further assessment, which may lead to a poorer prognosis (Ruissen et al., 2012). Therefore, despite the fact that OCD is often associated with a generalized inability to make decisions (Sachdev & Malhi, 2005; Rocha et al., 2011; Benzina et al., 2016) and impaired communication skills (Eisen et al., 2006; Ghahari et al., 2017), this paper argues that an individual with OCD is still capable of meeting the requirements of intellectual competence to consent to participating in a qualitative research study. As previously mentioned, this paper does not discuss the competence of a person with OCD to consent to medical treatment; rather, their ability to consent to participating in a qualitative non-therapeutic research.

Furthermore, one additional issue is the lack of awareness of the mental illness, which has been suggested to be a substantial indicator of the perceived incapacity in psychiatric patients (Grisso et al., 1995). However, this may not always be true in the case of OCD. Although a patient’s life can be ravaged by the disorder, their cognitive functional competence is uniquely identified via a specific cognitive behavior; namely, the concealment of thoughts. To put it simply, people suffering from OCD attach catastrophic personal significance to their intrusive thoughts which may cause anxiety in these individuals (Newth & Rachman, 2001). Regardless of the dysfunctional beliefs that are a feature of OCD (Belloch et al., 2006), only OCD sufferers with pure obsessions (Pure-O) who do not engage in compulsions (rituals) are aware of the silliness and irrationality of these thoughts, which leads to the eventual concealment of these thoughts to avoid accusations of craziness and misjudgments of their condition (Newth & Rachman, 2001; Ruissen, 2015). This can be considered as an indication of insight that does not overlap with competence. The occurrence of the concealment phenomena in the early stages of treatment or when openness to others about the disorder is crucial for indicating that the person having these thoughts is indeed aware of their irrationality and they wish to stop them—regardless of whether or not they believe these thoughts to be true. Constant and tormenting doubts are also prevalent in OCD and is considered as one of the essential features of the disorder that force individuals with OCD to not only doubt their cognitive functions, but also their internal states such as comprehension, feelings, or beliefs (Boyer & Liénard, 2006; Lazarov et al., 2012). Therefore, OCD-affected individuals may delay seeking professional treatment (Goodwin et al., 2002; Marques et al., 2010) because of the stigma, shame, and discrimination (Cathey & Wetterneck, 2013). As a result, a person with OCD is expected to seek pathological behavioral rituals (e.g., repetition, checking, or avoidance) to ease the distress. Consequently, despite this deficit, people with OCD are able to function properly by using compensation strategies to help regulate their internal states (Shapiro, 1965; Reed, 1985). Thereupon, regardless of the pathological outcomes of seeking relief by attempting these aforementioned rituals, this suggests that they are cognitively capable and that problem solving skills are intact. Also, people with OCD have shown pragmatic competence via macrolinguistic competence indicators (i.e., discourse and pragmatic abilities), as claimed by Ghahari et al. (2017). These authors examined and compared the pragmatic production and recognition of OCD sufferers with non-sufferers. The study found that there were no significant lags of pragmatic recognition and production abilities observed between individuals with OCD and those without any psychiatric problems. Therefore, regardless of the cognitive and neural deficits in people with OCD (Okasha et al., 2000; Shin et al., 2014), and the overwhelming debate about the competence of these individuals to make their own treatment decisions, this paper argues that, until proven otherwise, individuals with OCD have a sufficient cognitive competence to preserve their right to their own independence and their ability to make decisions related to research participation.

The relationship between the researcher and the participant

Semi-structured interviews are considered the most favorable methods of conducting qualitative research. Since interviews require the communication between two or more individuals for the exchange of personal information and stories (Mishler, 1991), a sense of an intimate relationship might develop as the interview proceeds (Bulpitt & Martin, 2010). Therefore, it is vital that researchers remain aware of the relationship that forms between the researcher and participant when conducting a qualitative non-therapeutic research on vulnerable individuals with sensitive conditions. This is further challenged by the fact that sensitive topics are often difficult to define (Dempsey et al., 2016), and are most often associated with emotions that evoke panic or dread (Lee, 1993). With that being said, it is of great significance to consider the potential effects of this inequality of power between the researcher and the vulnerable participant. Houghton et al. (2010) have mentioned three issues that might raise ethical challenges when conducting research studies on vulnerable people: (1) the way relationships are created and managed; (2) the imbalance of power between the researcher and the participant; and (3) the psychological, emotional, and personal effects that emerge as products of this relationship (Houghton et al., 2010).

To avoid any issues, an empathetic and reflexive approach to interviewing vulnerable participants and an attempt to understand the world from their perspective (Plas et al., 1996; Bulpitt, & Martin, 2010) would ensure the participants’ dignity and autonomy. In fact, researchers conducting reflexive research interviews have reported therapeutic benefits for the psychologically disturbed individuals who participate in this type of interview (Nicolson, 1995). One example is a case study by O’Neill (1999). Here, a sufferer narrates her story living with OCD. The researcher’s analysis is then showed to the informant, who provides her comments on the analysis of her narratives in what is called “reflexivity within the research process.” Since the participant was deliberately involved in the interpretation and analysis of her own narratives, this gave her the power to understand her thoughts and allowed her to reflect on her experiences to be better understood (O’Neill, 1999).

In a similar manner, it is of similar importance for qualitative researchers to be able to distinguish the fine line in which the interview might take a therapeutic direction when conducting non-therapeutic qualitative research. It is important to realize that a therapeutic environment might be naturally imposed on the interview due to the openness of the interviewee and the empathetic attitude of the researcher; hence, both therapeutic and intellectual interviews will eventually lead to understanding of and change of perspective on a given topic (Bulpitt & Martin, 2010). The specific purposes of each one is clearly distinguished in that a therapeutic interview aims at personal change and is concerned with healing psychological distress, while a research interview targets intellectual understanding of the immediate benefit for both the interviewer and the interviewee (Plas et al., 1996; Bulpitt & Martin, 2010). With this in mind, ethical considerations in terms of the benefits of interviewing vulnerable people on sensitive topics come to the fore. To clarify, Bulpitt and Martin (2010) argue that the roles of the interviewer and the interviewee in therapeutic and research interviews are significantly different, in terms of how the role of “helper” is uniquely recognized. In a therapeutic interview, the interviewer, the one who provides professional health care to ensure a stable mental health, is the helper for the interviewee. On the other hand, in a research interview, the interviewee is the helper who provides the necessary information to the interviewer to gain the utmost understanding of a given topic (Bulpitt & Martin, 2010). Therefore, the overlap between the nature of interviews and the roles of the interviewing parties are crucial in establishing boundaries that prevent unethical manipulative actions between parties.