On taking up space: A qualitative inquiry of depression in older adults with cancer

Abstract

Objective:

To identify the phenomenology of depression in older adults with cancer (OACs) in order to improve the accuracy of depression screening for this population.

Method:

Inclusion criteria were: ≥70 years old, history of cancer, no cognitive impairment or severe psychopathology. Participants completed a demographic questionnaire, a diagnostic interview, and a qualitative interview. Using a Thematic Content Analysis framework, critical themes, passages, and phrases used by patients to describe their perceptions of depression and how it is experienced were identified. Particular attention was paid to divergences between depressed and non-depressed participants.

Results:

Among 26 OACs (13 depressed, 13 non-depressed), qualitative analyses revealed four major themes indicative of depression (i.e., anhedonia, reduction in social relationships/loneliness, lack of meaning and purpose, lack of usefulness/feeling like a burden) and four minor themes (i.e., attitude towards treatment, mood, regret/guilt, physical symptoms/limitations). Themes of adaptation and acceptance of symptoms also emerged.

Conclusions:

Of the eight themes identified, only two overlap with DSM criteria. This supports the need to develop assessment methods of depression in OACs that are less reliant on DSM criteria and distinct from existing measures. This may improve the ability to identify depression in this population.

Introduction

Diagnosing depression in older adults with cancer (OACs) presents unique challenges. For cancer patients, the overlap between classic depressive symptoms and the symptoms of cancer and treatment side effects becomes problematic. Although the “gateway” symptoms of depressed mood and loss of pleasure or interest may be the two most important symptoms for assessing depression in patients with cancer broadly, older patients may be less likely to endorse these questions, even in the context of significant depressive symptoms (Chochinov et al., 1997; Mitchell, 2008). Thus, for OACs, there may be few, if any, Diagnostic and Statistical Manual of Mental Disorders (DSM) symptoms that consistently identify depression (American Psychiatric Association, 2013).

Given the importance of identifying depression in OACs, self-report instruments have tremendous importance in clinical and research settings. However, self-report measures are typically based on DSM criteria, which may not be ideal for identifying depression in OACs. In fact, there is evidence that self-report scales significantly underestimate the severity of depressive symptoms compared to expert clinician diagnosis in older adults (Brodaty et al., 2005). One study found that up to 83% of OACs had a “missed” diagnosis of clinically significant depression based on existing cutoff scores and low overall endorsement of self-report items (i.e., measures such as the Geriatric Depression Scale-Short Form, the Hospital Anxiety and Depression Scale, and the Center for Epidemiological Studies Depression Scale-Revised; Eaton et al., 2004; Saracino et al., 2017, Yesavage et al., 1982; Zigmond and Snaith, 1983).

It is therefore important to examine validation data for current measures in this population. However, there are three obstacles. First, there are few, if any, validation studies of self-report depression measures conducted in OACs. There are no formal validation studies for any of the eight depression measures most commonly utilized in this population (Nelson et al., 2010).⁶ Secondly, validation studies are likely to use DSM diagnostic criteria as the “gold standard” or might examine correlations among different measures, most of which are based on DSM criteria. As noted above, the current conceptual framework that forms the basis for DSM criteria and existing self-report measures for depression may contain bias when applied to OACs, and neither of these criteria represent an appropriate “gold standard” for identifying depression in OACs. Thirdly, current measures do not typically assess symptoms that appear important for assessing depression in OACs. The literature suggests that symptoms such as diffuse somatic complaints, general malaise, hopelessness about the future, general aches and pains, stomach aches, peripheral body changes, and changes in sexual interest may be more relevant than DSM criteria (Saracino et al., 2016; Weinberger et al., 2009). Existing measures include very few, if any, of these potentially relevant symptoms (Nelson et al., 2010).

Thus, a more thorough examination of the nature of depression in OACs is required as a first step to optimize the ability of researchers and clinicians to develop effective screening for this growing population. The primary aim of the present study was to identify the phenomenology of depression in OACs with qualitative exploration rather than through the standard lens of DSM criteria.

Materials and Methods

Research Team

Personal characteristics

The diagnostic phase of the study included three Board Certified geriatric psychiatrists (YA, female, JH, female, and AR, male), who conducted evaluations of potential participants to confirm their diagnosis and eligibility for the study. All patient qualitative interviews were then conducted by two female Clinical Psychology Doctoral students (RS, KT). The data analysis team included the two qualitative interviewers, a female Qualitative Methods Specialist (ES, MA degree), two female Research Assistants (IA, BA degree, JE, MA degree), and one male clinical psychologist (CN, PhD). All study processes were overseen by the Qualitative Methods Specialist (ES), who had over 10 years of experience in the field at the time of analyses.

Relationship with participants

Study participants had no prior relationship with the study interviewers. During informed consent, extra emphasis was placed on the voluntary nature of the study and that their care would not be impacted by their decision to participate or not, nor would their interviews be shared with anyone outside of the research team. The rationale of the study was explained to participants and they were given the opportunity to ask questions or seek clarification on study goals. Participants were informed that the study interviewers were Clinical Psychology doctoral students with an interest in understanding how individuals with cancer experience depression.

Theoretical framework

The present study was grounded in a phenomenological approach, seeking to understand individuals’ lived experiences with cancer, aging, and depression. Thematic Content Analysis (TCA) guided the generation and interpretation of major and minor study themes (Bernard, 2017; Green & Thorogood, 2018; Lewis, 2015; Miles & Huberman, 1994; Patton, 2002).

Study Design

This study was approved by the Memorial Sloan Kettering Cancer Center (MSK) and Fordham University Institutional Review Boards (IRB #14-101). Potential depressed subgroup participants were identified by a review of MSK Counseling Center (CC) clinic lists, while non-depressed potential participants were identified through both the CC and outpatient chemotherapy clinic lists. Recruitment was conducted by RS and KT, who obtained permission to approach eligible patients from their treating clinician prior to contact with the patient. Inclusion criteria were: 1. ≥70 years old and 2. History or current diagnosis of cancer. Individuals were excluded if they: 1. Scored ≥11 on the Blessed Orientation-Memory-Concentration Test (BOMC; Katzman et al., 1983) or 2. Exhibited severe psychopathology (i.e., active psychotic disorder) or cognitive impairment likely to interfere with the participation or completion of the protocol or ability to provide meaningful information. Eligibility was confirmed through verification of the Electronic Medical Record (EMR). Depressed and non-depressed subgroups were recruited to ensure symptom heterogeneity. While active suicidal ideation was not exclusion criteria, it was not explicitly screened for. An established safety protocol was implemented should a participant express suicidal ideation throughout the course of their participation in the study.

Procedures

Participants were approached in person at the MSK CC, outpatient clinics, or contacted over the telephone and invited to learn about the research study. Those who were interested in participation completed a cognitive screener (i.e., BOMC) to confirm eligibility. Those who were eligible and interested provided informed consent before completing a demographic questionnaire and scheduling their study interviews. A two-step process was used to confirm the depression status of participants. The first step was confirming a depressive disorder diagnosis recorded in the EMR. The second step was an independent interview with one of the study team geriatric psychiatry experts to confirm a patient’s current depression status (i.e., whether the patient was currently depressed or not). Experts sent their evaluation to the study staff, who scheduled and conducted the subsequent qualitative interview. All qualitative interviews were conducted by telephone or in person in private rooms at the MSK CC. Only participants and study researchers were present for informed consent, data collection, and interviews. Participants received $20.00 as compensation for participation.

Data collection

The semi-structured interview guide was developed by the study team in an earlier phase of this study (see Table 1). Nationally recognized experts in geriatric psycho-oncology were interviewed about the signs and symptoms they consider when evaluating OACs for depression. The themes derived from these interviews and a comprehensive literature review were utilized to develop the semi-structured interview used in the present study (Saracino et al., 2016).

Table 1.

Semi-Structured Patient Interview Guide

Cancer and Treatment History Please describe your cancer story (including treatment status/history). Do you (or have you) ever feel like giving up on treatment? AND/OR How important is it for you to follow-through with your medical appointments and adhere to all of your treatments? Why? Anhedonia and Activities of Daily Living Tell me about a normal day. If not sufficient, ask: Can you walk me through what you do on a normal day starting with when you wake up? What is your mood like throughout the day? Does it change? (Query re: Change – is this a change for you from before you had cancer?) Is there anything that you find interesting? Enjoyable? If you had more energy do you think you would still do the things you used to enjoy? Do you still take as good care of your appearance now as you used to? Social Relationships What are the major relationships in your life? How much do you interact with friends/family? To what extent would you want to interact with them more, if at all? What are the barriers to interacting with them more often? To what extent do you ever feel lonely, if at all? (What types of thoughts do you have that are associated with this feeling?) Meaning and Purpose (Query after each depending on Y/N Response) Do you feel a sense of purpose in life? What does that look like for you? Do you feel useful? (Are you able to get things done / help other people as much as you would like?) Do you ever feel that life is not worth living? Do you ever find yourself feeling regretful? What about specifically (including thinking about the past)? Do you ever feel that you are a failure in some way? Do you ever feel guilty? Do you ever feel a sense of worthlessness? Do you ever feel like a burden? Subjective Cognitive Complaints and Psychomotor Slowing Do you ever feel ‘slowed down’ (qualify between mental [not thinking as quickly as you used to] and physical slowing [not moving as quickly as you used to])? How is your concentration? Do you find yourself having more trouble making decisions than usual? How is your memory? Do you feel that they are impacted by your mood? Physical Symptoms Are you experiencing any of the following physical symptoms? How is your sleep? Are you fatigued (low energy)? How is your appetite? Do you have any other gastrointestinal symptoms (provide examples)? What is your pain level? Are any of these symptoms impacted by your mood? Are there any other physical symptoms that you think are related to your depression? Patient-Reported Perspectives on Symptoms What are the obvious signs that you are feeling down or depressed? To what extent do you try to hide that you are feeling down, if at all? Would your family and friends know that you are feeling depressed? How do you feel that they could tell? What questions could someone ask that would give them an indication that you are depressed? Optional (if time permits) How has age impacted your mood and view on life? How have your daily life routines changed, as compared to when you were younger? How have your thoughts about life changed, as compared to when you were younger? How have your feelings about life changed, as compared to when you were younger? How has cancer impacted your mood or view on life? How have your daily life routines changed because of cancer? How have your thoughts about life changed because of cancer? How have your feelings about life changed because of cancer? How are you different compared to your friends your age who do not have cancer?

The qualitative interviews were conducted in a single session. All interviews were audio-recorded and transcribed; recordings ranged from 18 to 114 minutes (Note: Interview recording length variability was primarily due to a range of patient styles, as some were more elaborative and therefore required additional time to complete the interview). Interviews were analyzed iteratively and concurrently with data collection, and participants were recruited until thematic saturation was achieved (i.e., based on team meetings and discussion of transcripts; Guest et al., 2006). All data are available upon request from the corresponding author.

Data Analysis

The coding team was comprised of five coders (RS, KT, JE, IA, CN) overseen by ES. All themes were derived from interview transcripts. Microsoft Word was used to manage the data analysis at each phase. Interview transcripts were analyzed in multiple phases using Thematic Content Analysis (Bernard, 2017; Green & Thorogood, 2018; Lewis, 2015; Miles & Huberman, 1994; Patton, 2002). First, the research team independently read each transcript and highlighted content that they perceived as noteworthy or aligned with study goals. This was an inductive approach that did not include a priori codes, but rather allowed themes to emerge based on each study team member’s reactions and interpretations of the transcripts. Members took notes in the margins of the transcripts to record their observations. Next, members synthesized their thoughts about notable findings in an analysis template, including participant quotations from the transcripts that illustrated their observations. Team members then met to share their independent observations and analysis and collaboratively identified descriptive and interpretive themes representing the most salient findings. Particular attention was paid to divergences noted between depressed and non-depressed participants to conceptualize the most significant symptoms of depression in OACs. Using a process of triangulation among team members, themes were classified as major or minor (Patton, 1999).

Results

Sample characteristics

Forty-eight individuals were approached for participation. Of those, 26 participants provided informed consent and completed the study (see Table 2). Twenty-two individuals were approached but declined participation due to: passive refusal (n=15); not interested (n=5); visual impairment (n=1); feeling too physically ill (n=1). Most participants identified as non-Hispanic White (96%, n=25) and female (65%, n=17), with a mean age of 76.7 years (SD=5.4; range = 70-88). Heterogeneous cancer types were represented within the sample (see Table 2). Half of participants (n=13) were classified as depressed during their initial interview with study clinicians, and half (n=13) as non-depressed.

Table 2.

Sample Characteristics (N=26)

		M	SD
Age		76.7	5.4
		n	%
Gender	Male	9	34.6
	Female	17	65.4
Race	White	25	96.2
	Black	1	3.8
Ethnicity	Hispanic	1	3.8
	Not Hispanic	25	96.2
Marital Status	Single	7	26.9
	Married/Living with partner	4	15.4
	Divorced/Separated	6	23.1
	Widowed	9	34.6
Education	Did not graduate high school	0	0
	High school graduate/GED	2	7.7
	Partial college/vocational training	3	11.5
	College graduate	8	30.8
	Graduate degree/professional training	12	46.2
Primary Cancer	Gynecological	4	15.4
	Breast	4	15.4
	Lung/bronchus	4	15.4
	Lymphoma	3	11.5
	Prostate	3	11.5
	Penile	2	7.7
	Liver	1	3.8
	Colon/Rectum	1	3.8
	Stomach	1	3.8
	Bladder	1	7.0
	Pancreas	1	7.0
	Myelofibrosis	1	7.0

Overview

Qualitative analyses revealed four major themes (i.e., anhedonia, reduction in social relationships/loneliness, lack of meaning and purpose, lack of usefulness/feeling like a burden) and four minor themes (i.e., attitude towards treatment, mood, regret/guilt, physical symptoms and limitations). Themes were classified as major or minor based on their frequency and salience as determined by research team consensus. Categorization as major or minor does not necessarily suggest better or worse utility for diagnosis, but rather, frequency as observed in qualitative analyses. These themes and illustrative participant quotations are described below.

Major themes.

Anhedonia.

The experience of anhedonia emerged as a central construct distinguishing depressed from non-depressed participants. Anhedonia was multifaceted. Depressed participants reported a cessation of most activities and reduced activity compared to their baseline. If they did engage in activities, they felt they were just “going through the motions” and did not gain enjoyment.

I don’t have the spirit […] No motivation, that’s the right word […] I have no incentive to do anything, I don’t feel no reward.

(84-year-old depressed woman, stomach cancer)

Additionally, depressed participants consistently reported not being able to initiate new activities despite a stated interest in doing so. This was not due to physical limitations but rather a lack of volition and/or motivation.

It’s so hard. In my head I want to do this, I want to do that. My friend told me to join a book club. She says I joined a book club…and she says you always say okay and you never do it.

(76-year-old depressed woman, breast and thyroid cancer)

In contrast, non-depressed participants maintained a full range of activities that they enjoyed.

It’s better to do something than to do nothing. And it makes a big difference.

(75-year-old non-depressed man, myelofibrosis)

While both groups described some physical limitations, there were differences regarding reports of symptoms as a cause of activity cessation. Depressed participants cited fatigue or low energy as barriers to activity, whereas the non-depressed also experienced these symptoms but reported being able to “push through” them.

Reduction in social relationships and/or loneliness.

All participants reported losses in social relationships of some kind. However, the depressed sub-group endorsed feeling lonely, a reduction in social contact, withdrawal from relationships, and isolation. Interest in social relationships was also reduced in depressed participants.

Other times I will come home and the phone will ring, and I’ll look at the caller ID, and I’ll just ignore it. And it could be family. It could be one of my grandchildren. I, I just can’t stand the thought of having to talk to anybody. I just want to get into bed and go to sleep.

(77-year-old depressed woman, lymphoma and liver cancer)

Among depressed participants, the experience of loneliness and isolation was very salient.

But then I wonder who the hell will remember me. I have this feeling that my family will just throw me into the grave and walk away. I don't think they’ll literally do that, but that’s how I feel.

(72-year-old depressed woman, ovarian cancer)

In contrast, non-depressed participants described adapting to losses and were not lonely despite a reduction in social relationships. They tended to describe rewarding relationships and social lives and were content with their degree of socialization.

I interact with others a good amount. Sometimes I like it when I’m just by myself.

(72-year-old non-depressed woman, lung cancer)

Lack of meaning and purpose.

Participants in both groups described a loss of “large scale” meaning in life overall. Depressed participants, however, described a more significant loss of meaning, and wondered if life was worth living. There was an overall sense of weariness of living, ambivalence about life, and a disconnection from life.

I never thought to kill myself but if I didn’t wake up it was okay […] I feel like I’m taking up space.

(76-year-old depressed woman, breast and thyroid cancer)

Depressed participants felt a lack of purpose.

My purpose is to make myself less of a burden.

(70-year-old depressed woman, ovarian cancer)

Non-depressed participants, however, derived meaning from multiple sources. Similarly, they were satisfied with the amount of meaning and purpose in their lives even if it had become smaller over time.

I’m relying on the wonderful things that I did that feeds me to continue.

(74-year-old non-depressed man, prostate and skin cancer)

Lack of usefulness and/or feeling like a burden.

Depressed participants endorsed a lack of usefulness and feeling like a burden, and the constructs were intertwined.

The worst thing about getting older is you can do less than you could before… I’m useless.

(85-year-old depressed man, bladder and prostate cancer)

Feeling like a burden was salient among depressed participants, who felt they relied too much on others.

I am an imposition on other people… I think I kind of think of myself as a very independent person… And I cannot be independent anymore.

(70-year-old depressed woman, ovarian cancer)

Conversely, non-depressed participants appeared to have more adaptive views regarding usefulness and burden. They did not seem bothered by feeling useful or not and accepted it if they did not see themselves as useful, or no longer “needed” to be useful.

I don’t feel I need to be useful […] I don’t feel like I’m a burden on anybody.

(76-year-old non-depressed woman, lung cancer)

Minor themes.

Mood.

Some level of health anxiety was reported across all participants. However, overall, mood appeared to be a salient symptom distinguishing depressed and non-depressed participants. The depressed cohort had fluctuating mood and cited irritability, sadness, distress, and sensitivity or emotional reactivity over the course of a typical day.

Sometimes I don’t like the way I feel, very aggressive.

(84-year-old depressed woman, stomach cancer)

Participants did not tend to use the word “depressed” to describe their low mood.

I just seem to have a little less enthusiasm for life…and a gloominess about things in general.

(70-year-old depressed man, penile cancer)

Depressed participants also commonly noted diurnal variation in mood.

During the day my bad moods are generally in the morning, when I have to face the day.

(70-year-old depressed woman, ovarian cancer)

In contrast, non-depressed participants reported more consistent, level mood and less reactivity.

I have a very good mood, usually.

(74-year-old non-depressed man, prostate and skin cancer)

Regret and/or guilt.

All participants endorsed regret to some extent. Guilt was intertwined with regret, as participants described feeling guilty about things they regretted from the past. Sources of regret were also common between groups, with a focus on relationships and career decisions. The distinguishing feature between depressed and non-depressed participants was that those who were depressed tended to ruminate and be bothered by their regrets and guilt and identified more regrets overall.

And a regret about the past, about the way I’ve lived my life and things I’ve done that have caused problems for other people, including my family…

(70-year-old depressed man, penile cancer)

Non-depressed participants were able to acknowledge regrets as a normal part of life and did not perseverate on them.

I think everybody’s going to have regrets.

(76-year-old non-depressed woman, lung cancer)

Attitude towards treatment.

Participants across both groups were generally adherent to their cancer treatments and experienced treatment-related side effects. Depressed participants appeared to be resigned to their fate and were adherent to treatment because they felt obligated to continue.

It’s hard to explain […] I’m just tired of every three weeks and the whole regimen […] I won’t stop treatment, but I’m just disgusted.

(72-year-old depressed woman, ovarian cancer)

Non-depressed participants were more proactive in seeking new treatments, speaking with their doctors about quality-of-life issues, and dealing with side effects. They appeared more willing to continue their treatment into the future.

Physical symptoms and/or limitations.

Participants described being physically slowed down and having multiple physical symptoms and functional limitations. Low energy and fatigue were pervasive. Sleep disturbances were also common across both groups, though depressed participants often attributed this to anxiety and/or depression. Despite the overlapping symptoms between groups, depressed and non-depressed participants diverged markedly in their ability to adjust to these symptoms. Depressed participants were not able to overcome low energy or adjust their daily activities to accommodate age and cancer-related changes.

Definitely the lack of energy, that’s when I have very bad days is related to my energy.

(70-year-old depressed woman, ovarian cancer)

Non-depressed, conversely, were able to put their physical symptoms and side effects in a more tolerable perspective.

So, I’m dealing with it. The chemo, you know, I ache and I’m tired and I can’t eat, but you know.

(76-year-old non-depressed woman, lung cancer)

Discussion

The current study characterized the unique experience of depressive symptoms as reported by OACs. Analyses revealed four major themes (anhedonia, reduction in social relationships/loneliness, lack of meaning and purpose, lack of usefulness/feeling like a burden) and four minor themes (attitude towards treatment, mood, regret/guilt, physical symptoms/limitations). Importantly, only two of these themes are symptoms of depression as operationalized by the DSM (Table 3). The methodology of the study utilized expert interviews as the criterion indicator of depression rather than a structured diagnostic interview based on DSM criteria, which has historically presented an inherent circularity when evaluating the utility of alternative depression symptoms. Qualitative analyses confirmed the emergence of constructs not typically captured on standard depression screeners and indicate the importance of assessing these concepts.

Table 3.

DSM^† and Alternative Symptoms for Assessing Depression in OACS^‡

	Cognitive and Affective	Somatic
DSM criteria	-Anhedonia §	N/A
	-Mood
Non-DSM criteria	- Reduction in social relationships/loneliness
	- Lack of meaning and purpose
	- Lack of usefulness/feeling like a burden
	-Attitude towards treatment	-Physical symptoms and limitations
	-Regret/ guilt

^†DSM=Diagnostic and Statistical Manual of Mental Disorders

^‡OACs=Older Adults with Cancer

^§Bold font indicates major themes, unbolded font indicates minor themes.

The DSM gateway symptoms of MDD, anhedonia and depressed mood, did emerge as major and minor themes, respectively, suggesting that they retain their clinical utility in OACs. This observation is consistent with a recent large psychometric study of depressive symptoms in adults with cancer in which item response theory analyses indicated that the gateway symptoms were “easier” to endorse than others, thus serving as appropriate “entry criteria” for a diagnosis of MDD in oncology settings (Saracino et al., 2020). Thus, these items appear relatively reliable for distinguishing depressed from non-depressed individuals with cancer. Importantly, however, anhedonia appears more salient and a more consistent indicator of depression in OACs. This finding replicates a robust literature of geriatric depression broadly, which has identified anhedonia as a hallmark of depression in older adults (Akincigil et al., 2011; Alexopoulos, Borson, et al., 2002; Alexopoulos, Kiosses, et al., 2002; Blazer, 1997; Blazer, 2003; Gallo et al., 1994; Gallo et al., 1997). The current results suggest that depression screening measures should query about the multiple facets of anhedonia including loss of interest, loss of pleasure, and loss of motivation or an inability to initiate new pleasurable activities. Measures often rely on a single item that captures a loss of interest but not necessarily motivation/volition. Depressed participants in the current study often described interest in doing new things but an inability to initiate them. This is perhaps illustrative of the executive dysfunction that can characterize geriatric depression, in which individuals experience significant challenges with planning and initiating new behaviors (Alexopoulos, Kiosses, et al., 2002). Regarding mood, measures that include broad language such as “gloomy”, “the blues”, or “irritable” might be more likely to be endorsed by OACs, who may report a general aversion to the term “depression” or even “sadness.” Candidate items generated in the next phase of the current research project will ask OACs about a range of mood descriptors to ensure they are palatable.

The experience of social isolation, loneliness, and social withdrawal were common among depressed participants. Like anhedonia, these constructs should be queried separately on depression screening measures as they represent unique facets of social connectedness. While it is widely known that older peoples’ social networks grow smaller as they age, the perception of that network is most important to consider when evaluating depression (Blazer, 1997, 2003). Social withdrawal may be associated with anhedonia or a decreased interest in social engagement. Social withdrawal has previously been suggested as an alternative diagnostic indicator of depression in individuals with cancer and the present results further support that proposal (Endicott, 1984; Saracino et al., 2020).

Loss of meaning and purpose has also been acknowledged in the context of living with cancer and was a clear indication of depression in this sample of OACs (Breitbart et al., 2015; Breitbart et al., 2018; Robison et al., 2015). Relatedly, although nuanced, was the emergence of “uselessness” and “feeling like a burden” as important components of depression. Depressed OACs struggled more with feeling a loss of usefulness or purpose and increasing fears of, or guilt about feeling like a burden to others. Conversely, non-depressed OACs typically acknowledged and made peace with changes to interpersonal dependence. Items that capture these constructs are not usually found on depression measures, but their discriminative validity for flagging clinically significant depressive disorders should be further evaluated. This group of symptoms is of particular importance as they are commonly associated with suicidal ideation and could serve to identify OACs who are the greatest risk of developing this devastating symptom (Joiner et al., 2002; McPherson et al., 2007; Van Order et al., 2015).

A consistent observation across major and minor themes was that processes of adaptation and acceptance appeared to distinguish depressed from non-depressed participants. Non-depressed participants tended to demonstrate acceptance of the limitations of aging. Similarly, they often reported finding ways to “push through” and even transcend challenges, while depressed participants appeared to have a harder time doing so and instead felt more helpless. These processes can be seen, for example, among three minor themes: regret/guilt, attitude toward treatment, and physical limitations. Non-depressed participants shared that while they experienced regret and guilt, they were able to normalize these feelings, place regrets in a tolerable perspective, and not perseverate on them. Similarly, they accepted their cancer treatments as a necessary part of survival despite their side effects and did not resent them. They also found ways to adjust their activities to pace themselves and accommodate fatigue and other mounting physical limitations. Depressed participants did not appear to engage in these adaptive processes and were instead overwhelmed by the combined challenges of cancer and aging. This observation is consistent with successful aging theory such as Selective Optimization with Compensation (Baltes & Freud, 2003; Freund & Baltes, 1998; Regier & Parmelee, 2021). “Successful agers” change their behaviors in order to maximize gains and minimize losses. For example, they might redefine goals in the context of new disability (selection), plan daily activities around times when they have the most energy (optimization), and enlist the help of a caregiver (compensation). Perhaps those OACs who are not able to engage in these processes are more likely to develop depression.

Study limitations

Participants were drawn from a single cancer center and were predominately White, female, and highly educated. Thus, findings may be limited in their generalizability to more racially, ethnically, and socioeconomically diverse patient populations and those receiving care in community settings. This is particularly important to focus on in future studies, as depression is also underdiagnosed and undertreated in Black and Latinx communities, among others (Bailey, Mokonogho, and Kumar, 2019). To address the existing health disparities in depression care management, this line of work will be greatly enhanced by examining potential racial and ethnic differences in the experience and reporting of depressive symptoms. Additionally, most participants were drawn from the Counseling Center which means they were engaged in mental health care. Therefore, there may be a selection bias as participants may have been more socialized to discussing mood and other symptoms compared to the modal OAC not receiving mental health care. Participants were not asked to provide information about past episodes of depression or experiences of grief, bereavement, and loss. The severity of depression was also not assessed among participants, nor was suicidal ideation probed in detail. These variables may provide important nuances and/or contextual information to understand how psychopathology presents, and intersects with other variables, among OACs and should be included in future phases of this research.

The present study focused on DSM criteria for depression. However, other classification systems, for example, the International Classification of Diseases (ICD; World Health Organization, 2019), include potentially distinct symptoms. For example, the ICD includes all DSM depression criteria, as well as hopelessness. While hopelessness did not explicitly emerge in study interviews, it will be important to examine this construct further, and any others from other diagnostic systems to be as comprehensive and accurate as possible moving forward. Expert clinician interviews were also utilized for rendering study diagnoses. It is likely that experts were still influenced by DSM depression criteria, thus there was still a potential for circularity. However, this approach was determined to be the least reliant on classic symptoms of depression.

Clinical implications and future directions

The results do not eliminate the importance of DSM criteria. Instead, they suggest that while these classic symptoms may have high sensitivity, their specificity is limited in OACs. A new approach to assessment (e.g., based on the constructs identified in the present study) could facilitate more specific referral criteria. The next steps in this line of research will include the development of a set of candidate items for a new measure, as well as evaluating these items in a diverse sample of OACs. The quantitative evaluation of these constructs will also facilitate distinguishing the clinical utility and discriminative functioning of major and minor themes. For example, items that reflect minor themes may be endorsed less frequently but may have high discriminative functioning for distinguishing those who are most depressed from those who are not (i.e., similar to suicidal ideation).

Conclusions

The themes identified in the present study support the need to develop and evaluate a measure of depression in OACs that is distinct from existing measures. Constructs such as anhedonia, social isolation/loneliness, meaning/purpose, and usefulness/burden were very salient among depressed OACs, along with minor themes of mood, regret/guilt, attitude towards treatment, and physical symptoms/limitations. Methods of assessment that capture the multiple facets of these constructs could facilitate a paradigm shift in which reliance on DSM criteria no longer encumbers accurate depression diagnosis in OACs.