To our knowledge, the present work represents the first attempt to determine the degree to which individuals with personal experience with depression (whether of clinical or subclinical severity) spontaneously identify the same symptoms and constructs that researchers and clinicians use to describe, assess, and diagnose depression. Frank et al. (2007)
conducted a similar focus group study with depressed individuals, but used a discussion guide based on specific diagnostic symptoms. In contrast, our probes were open-ended allowing participants to describe their symptoms in a more naturalistic way. Thus, we hoped to capture patient experiences of depression without biasing them towards symptoms that are considered diagnostically important.
We found that individuals with mild to severe depression do report the vast majority of symptoms that clinical researchers have identified as diagnostic indicators of depression and depressive symptom severity. Over 90% of the a priori
hierarchical structure was generated by participants in response to open-ended probes, including cognitive, behavioural, social/interpersonal, somatic, and affective components of depression. In contrast, only three a priori
conceptual categories were not mentioned by focus group participants, while nine concepts mentioned by participants were not included in our a priori
codes. Of these, anger and anxiety were most frequently discussed (see ) while the remaining a posteriori
conceptual categories were mentioned 10 or fewer times. Interestingly, Frank et al. (2007)
also identified anger and anxiety as key components of depression that emerged among their focus group participants. Our results (and those of Frank et al., 2007
) provide reassuring evidence that depression, as described by patients across the depressive spectrum, is generally well characterized by existing assessment tools and methods. Focus groups generally did not require the generation of new items for depression and supported the content validity of the original PROMIS conceptual framework and item pool.
In addition to confirming existing methods, our focus group findings highlight several promising avenues for future inquiry. One area is the centrality of strained interpersonal relationships in major depressive disorder. Of the a priori
conceptual categories, we found that interpersonal concepts (loneliness, interpersonal alienation, interpersonal conflict, and social withdrawal and isolation) were the most commonly endorsed [175 unique occurrences out of 744 quotes (24%)] and were among the 10 most frequently used codes. Although there was a specific probe asking about the interpersonal impact of depression included in the focus group guide, interpersonal conflicts were spontaneously mentioned quite early in discussion. In 3 out of the 4 of the focus groups, the moderator omitted the specific interpersonal impact probe because the topic had already been thoroughly discussed. This speaks to the weight and importance that participants gave to the interpersonal consequences of depression. One possibility is that the interpersonal conflicts mentioned by participants, particularly in the depression group, are a function of personality disorders. Certainly, depression and personality disorders are often comorbid (Dunayevich et al., 2000
; Leibbrand, Hiller, & Fichter, 1999
; O’Brien & Vincent, 2003
; Starcevic, Bogojevic, Marinkovic, & Kelin, 1999
; Verheul, 2001
) and interpersonal difficulties have been used to screen for personality disorders (Pilkonis, Kim, Proietti, & Barkham, 1996
; Scarpa et al., 1999
; Stern, Kim, Trull, Scarpa, & Pilkonis, 2000
). However, there was no screening for or diagnosis of personality disorders completed as part of this study and this idea will need further research.
The centrality of interpersonal comments in our groups is consistent with a large body of research demonstrating the negative effects of depression on interpersonal relationships. There is theoretical and clinical support that points to negative interpersonal function as both a propagator and perpetuator of depression (see Joiner, 2000
). Similarly, interpersonal stressors are often associated with the onset of depression in psychotherapy theory, providing inroads for treating depression. This can be seen in the interpersonal psychotherapy (IPT) model (Klerman, Weissman, Rounsaville, & Chevron, 1984
) for depression, which has demonstrated effectiveness in the treatment of mild to moderate depression. IPT conceptualizes disturbed social relationships as both a possible cause and consequence of depression and seeks to remediate depression by rebuilding interpersonal strengths. Other approaches also focus on interpersonal function as a means of alleviating depressive symptoms. Our findings suggest that interpersonal consequences should be examined in conjunction with the assessment of major depressive disorder in order to fully capture a participant’s experience of depression. Our findings also broadly support overlap between the World Health Organization’s (2007)
tripartite framework of physical, emotional, and social health and participants’ conceptualizations of what it means to be a ‘healthy’ individual, and supports Joiner’s (2000)
focus on the importance of interpersonal function on the initiation and maintenance of depression.
Research in psychiatric nosology (Krueger, 1999
) suggests that the ‘structure of common mental disorders’ (excluding psychosis) can be captured at a general (second-order) level by two dimensions of psychopathology: an internalizing dimension reflected in unipolar depression and anxiety disorders and an externalizing dimension reflected in antisocial behaviour, anger, aggression, hostility, alcohol, and substance abuse. Our focus group findings were consistent with epidemiological studies documenting the substantial co-occurrence of internalizing and externalizing problems (Verhurst & van der Ende, 1993
). Specifically, we found evidence that anxiety is an integral component of patients’ experience of depression, and that externalizing behaviours such as anger and substance use are also viewed as symptoms of depression. Further research is needed to clarify the direction and nature of the relationship between these co-occurring problems and patients’ experience of depression.
Another area worthy of further research is the importance of anger in characterizing patients’ experience of depression. The frequency with which anger was spontaneously reported highlights the importance of this construct in our focus groups, echoing the experiences of other depressed focus group participants (Frank et al., 2007
). The relationship between anger and depression is not a new concept. The traditional psychodynamic conceptualization of depression describes depression as ‘anger turned inward’ against the self (Blatt, 1998
; Troisi & D’Argenio, 2004
). Previous studies in medically and psychiatrically ill patients have documented a relationship between anger and depression, with some researchers identifying a subtype of depression characterized by irritability and anger attacks (Fava, 1998
; Fava et al., 1993
). Further investigation of patient experiences with anger may help to clarify the relationship between depression and anger, and may contribute to the depth and breadth of depression assessment.
A final area for future research is the role of personal narratives in conceptualizing emotional health. In our focus groups, personal narratives about contextual facets of depression, such as grief and coping, occurred frequently, even though these topics were not solicited by the facilitators. When our participants discussed depression, they wanted to talk about not only which symptoms they experienced, but how their depression had come about and what they have done about it. While contextual factors do not necessarily inform standardized assessments of depression, they suggest that attention to patients’ search for meaning about their symptoms represents an important aspect of treatment.
A limitation of this work is the relatively small sample size. However, it should be recognized that the aim of qualitative research is to capture the experience of representative members of the population of interest rather than to accurately estimate population scores, as is the goal of quantitative work. As such, there is much more emphasis on the quality of the data than on the quantity in focus group work. That said CES-D scores for both the depression groups and medical condition groups were consistent with the epidemiological literature on depression. In the current study, the mean CES-D score in the psychiatric group was 20.5 (SD = 11.99), which exceeds the clinical cut-off score of 16 on the CES-D. The mean for the medical condition group was 10.3 (SD = 9.1), reflecting more ‘mild’ symptoms of depression and supports our goal of inclusion of individuals across the dimensional spectrum of depressive symptoms.
Although there is high comorbidity between physical illness and depression, it is possible that medically and psychiatrically ill patients experience symptoms differently. For example, ‘poor energy’ may be interpreted differently by someone suffering from cardiovascular disease than to someone suffering with a psychiatric condition. However, moderator summaries indicated a fair degree of overlap of both psychiatric and medical conditions in all of our groups. Thus, a fair critique may be that our samples were not divergent enough to distinguish between medically related depression and psychiatrically related depression. Given the prevalence of psychiatric and medical comorbidity, it may be misleading to recommend that future groups be conducted with more ‘pure’ samples. Instead, it may be useful in future work to recruit a broader sample of individuals from multiple sites to ensure coverage of the full spectrum of depressive symptoms and possible variation among demographic and diagnostic categories, especially given that depressive symptoms are commonly experienced by individuals, particularly chronically medically ill individuals, even if they do not develop a clinically significant depression as a result.
Another potential limitation inherent in most focus group research is that analysis is based on what participants report and may not completely reflect all of their experiences. For this reason, the fact that three concepts in the a priori hierarchical structure were not mentioned should not be taken to mean that they lack content validity. Elicitation of specific symptoms may require the types of pointed questions included in assessment batteries and symptoms checklists. An alternate explanation is that participants do not connect specific symptoms to mood disorders, because they attribute the symptoms to other medical, physical, or behavioural issues. It is also possible that individuals may not mention particular experiences when asked about depression because they do not associate them with depression, do not have insight into certain experiences or do not view them as pathological.
In addition, we were slightly disappointed in the inter-rater reliability statistic that we achieved. While our score of .56 was close to the .60 we consider to be acceptable, it is objectively low. However, given the number of categories that we identified for coding and the relatively minimal training that was afforded to our coder, we feel that our reliability score provides evidence that the coding system is moderately reliable. It is likely that the system could be simplified or more intensively trained to achieve more consistent results.
These limitations notwithstanding, the present work provides strong evidence that the symptoms and syndrome that psychiatry and psychology have defined as depression converges with how individuals in our sample experienced depression and conceptualize the construct. It also lends credence to the hierarchical structure developed in the parent study, PROMIS. With few exceptions, individuals representing the range of depressive symptomatology spontaneously described depressive symptoms that overlap significantly with clinical concepts of what it is to be depressed. However, this work also suggests that important aspects of the experience of depression, such as anger and interpersonal difficulties, may not be as well represented in the clinical assessments. Furthermore, there was a clear need for our participants to ‘tell the story’ of their depression rather than limiting their discussion to their current symptom profiles. As clinical science moves more towards patient-focused outcomes and assessment these themes deserve further attention.