“Empathy without sympathy”: An analysis of support-related preferences among young adult cancer survivors

Abstract

Objectives:

Young adult cancer survivors often experience altered social relationships which may be a result of social support networks not knowing how to effectively provide the support young adults need. This study aimed to identify and describe themes of young adults’ support preferences when engaging in cancer-related conversations and examine whether psychological distress is associated with support-related preferences.

Methods:

Young adult survivors (M^age=35.12, N=59) completed validated self-report measures of depression, cancer-related stress, social isolation, and two open-ended questions on types of preferred support.

Results:

Listening (81.4%) was most commonly preferred; showing pity/worry (33.9%) was most undesired. Other types of preferred support included empathy, validation, encouragement (42.4%), and honest conversation (23.7%); common types of undesirable support included being uninterested and changing the subject (32.3%), insensitive comments and questions (25.4%), and negative stories/personal comparisons (23.7%). Greater depressive symptoms (OR=1.21, p=0.05) were associated with a preference for honest conversations whereas lower depressive symptoms (OR=0.83, p=0.05) and greater cancer-related stress (OR=1.07, p=0.02) were associated with a preference for conversations that did not contain advice. Lastly, lower perceived social isolation (OR=0.88, p=0.05) was associated with a preference for conversations that were not minimizing and that did not contain expressions of pity/worry.

Conclusions:

Study findings can inform communication interventions and educate support networks about types of support young adults prefer when discussing cancer-related concerns.

Introduction

For individuals with cancer, one’s social support network serves as a key resource in coping with cancer-related concerns (e.g., fear of recurrence, emotional concerns) and fosters better psychological and physiological well-being.^1–3 However, receiving effective support from one’s existing social network after a cancer diagnosis and subsequent treatment has proven challenging for young adult survivors and serves to intensify psychological distress.⁴ Young adults often cite that social support networks (i.e., family, spouse/partners, friends) disregard the cancer life event by distancing themselves physically and/or emotionally, not expressing interest in hearing about their cancer experience, or are unwilling to talk about cancer-related feelings and concerns.^5–8 These actions, whether perceived or actual, are referred to as “social constraints”.⁹ A primary psychosocial challenge among young adult survivors is experiencing these altered and socially constraining relationships amidst a cancer diagnosis.¹⁰ However, limited research exists categorizing the support-related needs young adult cancer survivors prefer when engaged in cancer-related conversations (e.g., conversations where the cancer experience is the main topic) and in examining the prevalent role of psychological distress in influencing these needs.

From a developmental perspective, young adulthood is a time of transition, marked by continued separation from parents, forming and maintaining friendships, creating romantic relationships, becoming more established in society, and building a career while also establishing one’s home and family life.^11,12 Cancer thus presents an unanticipated shift in developmental life course which can contribute to abrupt changes in psychological and social well-being.^13,14 Adding to the complexity of a cancer diagnosis during young adulthood, is that social support networks are often unprepared to manage the cancer experience among young adult survivors. Further, social support networks often share the distress and concerns faced by young adult cancer survivors, such as changing social roles (i.e., more dependence on parents/partners, parenting concerns), a premature confrontation with the young adult survivors’ mortality, and loss of control.^13,15,16 This notion of shared concerns aligns with cancer descriptions such as cancer as a “we-disease”¹⁷ or “family-disease”.¹⁸

The social cognitive processing theory suggests that adjustment to cancer depends on the extent to which one finds their social network to be open and responsive to emotional disclosure.⁹ A socially constraining environment, one that is not open and responsive to emotional disclosure, has been associated with increased psychological distress among young adults with cancer^19,20 whereas young adults with less socially constraining environments (i.e., those high in social support) report less overall uncertainty and stress²¹ and less depressed mood and anxiety.^1,22,23 It has been suggested that socially constraining environments hinder the cognitive processing of emotions by not providing an environment that encourages individuals to engage in supportive emotional disclosure. Thus, in the presence of socially constraining environments, young adults are left to manage emotional concerns by themselves which serves to intensify psychological distress.⁹

Previous research has identified barriers (e.g., expressing pity and worry) and facilitators (e.g., encouraging words) to supportive communication across social support networks (family, partner/spouse, friends). ^1,5,24 These lines of work have suggested that those in a relationship often describe their partner as their main source of support whereas support from those that are single is drawn more from family and friends. Collectively, across social support networks, the literature suggests that support is either present and given empathetically and unprompted or not present at all and comprised of unhelpful behaviors (e.g., withdrawal, lack of understanding).⁸ One drawback of these studies is that they focus on how support is perceived to be helpful or unhelpful, and may not have identified types of support-related behaviors that young adult survivors prefer when engaged in cancer-related conversations.

Further, as psychological distress (e.g., depression, anxiety, cancer-specific stress) is prevalent among young adults with cancer, the presence of distress may impact preferred type(s) of support. Indeed, research has suggested that improvements to psychological and social well-being are fostered by tailoring supportive care based on specific characteristics of patients, such as depressive and anxiety symptoms.^25,26 However, to achieve improvements in psychological and social well-being there is a need for continued research into the support-related behaviors young adult survivors desire when engaged in cancer-related conversations and to examine how aspects of psychological distress influence type of desired support. Accordingly, the goals of this study are: (1) to identify and describe themes of young adults’ support-related preferences; (2) to examine whether common types of distress exhibited by young adult survivors are associated with support-related preferences.

Method

Participants and Procedures

Young adult cancer survivors (N=64) were primarily recruited through social media and/or blog posts on various young adult cancer organizations’ sites (Army of Women, GRYT Health, Lacuna Loft, and Young Survival Coalition) as well as those identified by the Pennsylvania State Cancer Registry. All were asked to participate in a larger study on communication among young adult cancer survivors. Young adults between the ages of 18–45 and diagnosed with cancer (excluding nonmelanoma skin cancer) within the past 5 years were eligible to participate. After the study four participants were randomly selected to receive a gift card. Informed consent was obtained from all participants, and procedures were approved by the appropriate Institutional Review Board. Five participants were excluded due to missing data which resulted in a final sample size of 59 young adult survivors.

Measures

Depressive Symptoms.

Depressive symptoms in the past week were measured using the 10-item Center for Epidemiologic Studies Depression Scale (CESD-10).²⁷ Young adult survivors rated their agreement with items on a four-point Likert-type scale ranging from (0) rarely or none of the time to (3) all of the time. A total score was calculated as an average of all items with higher scores indicating more depressive symptoms. Sample items included, “I felt depressed” and “I felt happy” (reverse scored). Cronbach’s alpha was 0.80.

Cancer-related stress.

Cancer-related stress during the past week was measured using the 22-item Impact of Events Scale-Revised (IES-R).²⁸ Young adult survivors rated their agreement with items on a 5-point Likert-type scale ranging from (0) not at all to (4) extremely. A sample item included, “I tried to remove cancer from my memory”. A total score was calculated as an average of all items with higher scores indicating greater cancer-related stress. Cronbach’s alpha was 0.93.

Social Isolation.

Perceived social isolation was assessed using the 8-item Social Isolation scale [Patient-Reported Outcomes Measurement Information System (PROMIS)].²⁹ Young adult survivors rated their agreement with items on a 5-point Likert-type scale ranging from (1) never to (5) always. A sample items included, “I feel that people avoid talking to me”. A total score was calculated as an average of all items with higher scores indicating greater perceptions of social isolation. Cronbach’s alpha was 0.94.

Social Support Preferences.

Two open-ended questions were asked to assess preferred and undesirable support-related behaviors. Specifically, young adults were asked, “When engaging in a cancer-related conversation with your social support network, what do you find to be most helpful for you?” and “When engaging in a cancer-related conversation with your social support network, what do you find to be least helpful for you?”.

Data analysis

Qualitative analysis.

Open-ended responses were first read and re-read by the study team (KD/AB) to gain familiarity with responses and to identify initial support-related needs. Data were examined participant by participant, in an iterative fashion, refining and modifying categories. Each time a new form of support emerged, the study team used constant comparative coding to determine if this reflected a new support-related code or if it fit into a previously described code. Codes were then sorted and compared until data saturation.³⁰ In total, 13 codes (e.g., empathy, positivity) were identified that aligned with preferred support-related needs and 13 codes (e.g., showing worry, not listening) were identified that aligned with undesired support-related needs when engaged in cancer-related conversations. Four codes (advice, no advice, making jokes, humor) emerged that aligned with both preferred and undesirable support (See Table 2). Young adult responses for preferred types of support were on average 14 words (SD=36.57) and were on average 16 words (SD=29.47) for undesirable types of support. Interrater reliability was high (>80%).

Table 2.

Frequency of support-related needs and relevant codes

Support-related needs	Relevant codes	N	%
Preferred Support
Listening	Listening	48	81.4%
Empathy, validation, encouragement	Empathy, patience, reassurance, validation, words of support	25	42.4%
Honest conversation	Asking questions, accepting realities, discussion, guiding/initiating the conversation, honest conversation, positivity, recognizing needs	14	23.7%
Undesirable Support
Minimizing, Showing Pity and Worry	Minimizing, showing worry, worrying, pity	20	33.9%
Uninterested and Changing the subject	Changing the subject, lack of interest, not listening and distracted, non-confrontation	19	32.2%
Insensitive Comments and Questions	Insensitive comments, insensitive questions, shaming, empty consolidation, pessimism, discouragement	15	25.4%
Negative Stories and Personal Comparisons	Personal anecdotes, trying to relate	14	23.7%
Both Preferred (P) and Undesirable (U) Support
Advice	Advice	P: 7 U: 24	P: 11.9% U: 40.7%
Humor	Making jokes, humor	P: 1 U: 1	P: 1.7% U: 1.7%

Quantitative analyses.

Descriptive statistics and zero-order correlations were conducted for key study variables. Associations between demographic variables (e.g., current age, sex) and medical variables (e.g., time since diagnosis, treatment) and history of a depressive or anxiety disorder with dependent variables (depressive symptoms, cancer-related distress, social isolation) were examined as possible covariates. Binary logistic regression models were conducted that simultaneously included the three psychological distress predictors of interest (depressive symptoms, cancer-related stress, social isolation), predicting each of the top three support-related needs (as dependent variables), while controlling for significant covariates of time since diagnosis, history of depression and anxiety, and employment (employed vs. not employed).

Power analysis.

An a priori power analysis (G*Power 3.1) for logistic regression was conducted. Using probabilities for effect size, with 80% power given an α=0.05, a sample size of 53 was required, thus we were adequately powered given our sample size.

Results

Participant demographic and medical characteristics

Young adult survivors ranged in age from 24–42 years old (M^age=35.12, SD=4.84), 96.6% female, and 93.2% identified as White. The majority were diagnosed with breast cancer (76.3%), 88.1% were diagnosed with early-stage disease, and 88.1% had completed main treatment. Young adult survivors were, on average, 2.2 years from diagnosis. (See Table 1).

Table 1.

Participant demographic and medical characteristics (N=59)

Variable	N (%)	Range
Current age (M/SD)	35.12 (4.84)	24–42
Months since diagnosis (M/SD)	26.85 (30.17)
Sex
Female	57 (96.6%)
Male	2 (3.4%)
Race
White	55 (93.2%)
Black	1 (1.7%)
Asian	2 (3.4%)
Other	1 (1.7%)
Marital status
Single, not partnered	12 (20.3%)
In a relationship	5 (8.5%)
Married	37 (62.7%)
Divorced	5 (8.5%)
Dependent children
Yes, living at home	24 (40.7%)
No	35 (59.3%)
Number of children (M/SD)	1.83 (0.70)
Cancer diagnosis
Breast	45 (76.3%)
Othera	14 (23.7%)
Cancer stage
Early stage (0-III)	52 (88.1%)
Stage IV	2 (3.4%)
Not staged (e.g., brain cancer)	5 (8.5%)
Treatmentb
Surgery	54 (91.5%)
Chemotherapy	43 (72.9%)
Hormone	37 (62.7%)
Radiation	28 (47.5%)
Treatment status
Completed main treatmentc	52 (88.1%)

^aBrain/Hodgkin's/Cervical/Leukemia/Colon/Ovarian/Thyroid/Salivary gland/Testicular;

^b>1 treatment could be selected;

^cIncludes hormonal therapy.

Qualitative results

Frequencies of each preferred and undesired support-related need are reported in Table 2. Definitions of support needs and exemplar quotes are presented below. Some participants responded to the open-ended questions by offering short phrase answers, these are denoted as italicized words in the results below.

Preferred Support

Listening:

Overwhelmingly young adult cancer survivors preferred that their social networks engage in listening, often without expressing an opinion.

One 32-year-old said,

I find it most helpful when my social network listens. They don’t need to provide advice, just speaking my fears/anxieties out loud to someone is very helpful for me.

Another 30-year-old female said,

Listening without expressing an opinion - just being there. When I was first diagnosed, it was most helpful for people to just be with me and let me talk about it on my own instead of having them pry about it.

Empathy, Validation, Encouragement:

This category involved conversations that were full of empathy and understanding, words of support, patience, reassurance, and validation.

One 38-year-old female said,

Empathy without sympathy, if that makes sense. Validation of my feeling is also an important thing.

Several other young adults noted that empathy, understanding, providing encouragement, offering love, validating and acknowledging feelings, and providing reassurance to also be helpful when engaging in cancer-related conversations.

Honest Conversation:

This category included desiring conversations that are full of positivity, accepting reality, providing helpful information, and being honest.

One 36-year-old female said,

Creating space in which I can be vulnerable and honest about my experience. Also, it has been really meaningful when someone recognizes and responds to basic needs that they can see I am facing (e.g., help with certain logistics, financial support).

Another 39-year-old female commented,

Allowing me to talk about the realities and ramifications of my diagnosis without dismissing them. When I say “I’m so scared I’ll die and leave my little girl (she’s 3)”, I need someone who can look me in the eye and say “yeah, you might.”

Several other young adults recalled that, asking thoughtful questions, staying positive, initiating the conversation, providing cancer-resources, and asking what they would like to know to also be helpful when engaging in cancer-related conversations.

Undesired Support

Minimizing, Showing Pity or Worry:

This category offers examples of what exactly young adults feel is unhelpful in these expressions of minimizing and showing worry/pity.

One 37-year-old male recalled that it is not helpful,

When my support system is more scared than I am.

Another 33-year-old male stated,

The best responses I’d gotten were essentially two-parters: 1. That sucks, and 2. Let me know if you need anything. That’s it. That’s all that you can really do. The former acknowledges that they are sad for you without pitying you and respects your emotional state by not making a judgment of what you’re expressing. And the latter - if backed up with actual assistance when called for - is the literal support that you may need.

Several young adults noted that, giving the ‘pity look’, when they get worried, and feeling sorry for me, to be additional unhelpful forms of support when engaging in cancer-related conversations.

Uninterested and Changing the Subject:

Young adults also talked about how it was unhelpful when engaged in a cancer-related conversation only to find the conversation shifting to a different topic, go silent, and/or conversations that gloss over the cancer-related piece.

One 36-year-old female recalled,

Changing the subject definitely is jarring. Glossing over what I’m saying is difficult to tell me “but you’re doing so well!” or “but you look so good!”.

Several young adults noted that changing the subject, appearing uninterested, lack of availability, blank stares, brushing it under the rug, and looking uncomfortable, were additional unhelpful behaviors when engaging in cancer-related conversations.

Insensitive Comments and Questions:

This category includes unhelpful remarks from support networks that consist of invasive questions or comments, shaming, and minimizing feelings or the cancer experience.

One 30-year-old female recalled these expressions not to be helpful,

Being told “at least I’m alive” “at least it’s just breast cancer” and “well it’s over now”.

Another 33-year-old male recalled,

Many people take the tact of “Oh, I’m sure you’ll be fine” or “You’ll make it through this, you’re tough” - the latter of which was all the more prevalent my second time around. Yes, I probably will... but that doesn’t change that the word “cancer” drives dark thoughts deep, and your denial of those deathly thoughts - however marginal their probability may be - is you casting a judgment of illegitimacy across my entire present emotional vista.

Other young adults mentioned unhelpful phrases as well, such as, “At least …”, “If it makes you feel any better …”, “I don’t know what to tell you”, “It could be worse”, along with other unhelpful negative and invasive remarks such as questioning one’s treatment plan and minimizing the cancer experience by not recognizing that challenges faced before diagnosis still exist.

Negative Stories and Personal Comparisons:

This category includes unhelpful comments that are filled with pessimism and discouragement as well as comments from support members which contain personal anecdotes as a means to try and relate with the young adult.

One 37-year-old female said that it is unhelpful when her support network,

Tells me about a family member or friend that has passed away. Saying someone “lost their battle” to cancer. Also, when someone tries to one up you, because they think they have it worse.

Another 38-year-old female noted that it is unhelpful when their support network,

Tries to relate to me by talking about their experiences with illness/disease instead of just listening.

Other young adults mentioned that talking about another person they knew with cancer, giving discouraging facts/statistics, making the problem about themselves, or connecting their own experience to what I was going through, to be additional unhelpful forms of support.

Preferred and Undesired Support

Humor and Advice:

Young adults noted that using humor to be both preferred and undesired, either through making jokes of issues (undesired) or using humor in general (preferred). In terms of advice-giving, young adults found some advice to be desired, however advice on a topic you’re not familiar with, or providing advice on cancer alternative treatments, was undesired. Further, some young adults mentioned that no advice at all was preferred, stating, I generally would not have liked advice or listening without expressing an opinion.

Quantitative results

Young adult survivors with greater depressive symptoms (OR=1.21, 95% CI: 1.00–1.46) were more likely to prefer cancer-related conversations that are honest and open. Young adult survivors with lower depressive symptoms (OR=0.83, 95% CI: 0.68–1.00) and greater cancer-related stress (OR=1.07, 95% CI: 1.01–1.13) were more likely to prefer cancer-related conversations that did not contain any advice. Young adults with lower perceived social isolation (OR=0.88, 95% CI: 0.78–1.00) were more likely to prefer conversations that did not contain minimizing and expressions of pity and worry. (See Table 3). No significant associations were found for support-related needs of listening, empathy, validation, and encouragement, and uninterested and changing the subject.

Table 3.

Psychological distress predicting most common types of support

Support need	Significant predictor	OR (95% CI)	p	Nagelkerke R2
Honest conversation	Depressive symptoms	1.21 (1.00–1.46)	0.053	0.314
Undesirable Advice	Depressive symptoms	0.83 (0.68–1.00)	0.046	0.211
Undesirable Advice	Cancer-related stress	1.07 (1.01–1.13)	0.020
Minimizing, Showing Worry and Pity	Social isolation	0.88 (0.78–1.00)	0.053	0.167

Discussion

These patient-centered perspectives offer insight into young adult survivors’ needs and desires for support within cancer-related conversations. Results point to types of support-related behaviors that are influenced by the presence of psychological distress. Study findings provide a foundation on which support-related interventions can provide effective support and services that are aligned with young adults’ unique support-related and psychological needs while educating support systems as they navigate the ongoing impact of a cancer diagnosis on their relationships with young adult survivors.

The most common support-related need that young adult survivors prefer when engaged in cancer-related conversations was listening, followed by empathy, validation, and encouragement; all forms of emotional support which serve to communicate to young adult survivors that they are valued and loved.³ Notably, these findings suggest that just being present for young adult survivors, without necessarily having to have all of the right words, is most often what was desired. This builds on prior research in which young adults who perceive their social networks to maintain a sense of normalcy, by being treated the same (e.g., not being overly sympathetic, not socially excluded), despite having cancer, is an effective form of social support.²⁴ In contrast, young adult survivors most commonly find cancer-related conversations that contain advice or expressions of pity and worry to be undesired. Indeed, overly sympathetic responses and expressions of pity to a cancer diagnosis are common experiences among young adult survivors.^24,31 This might reflect research suggesting that support networks that are unable to cope with a cancer diagnosis among a loved one often struggle to provide effective support.³² Further, a cancer diagnosis during young adulthood often leaves social support networks feeling lost shocked, sad, and confused, all of which contribute to support reactions that are often less than effective.²⁴

Young adult survivors with higher levels of depressive symptoms were more likely to prefer cancer-related conversations that were open and honest. Conversations that contain expressions of positivity, recognizing needs, accepting the reality of the cancer diagnosis, and guiding or initiating the conversation were most desired. Further, young adult survivors with lower depressive symptoms and greater cancer-related distress preferred cancer-related conversations that did not contain advice. Specifically, young adults reported receiving medical advice, advice on what to eat, on alternative treatments, and unfounded advice as undesirable. As these types of advice can only serve to intensify depressive symptoms and cancer-related distress it is not surprising that young adult survivors with lower depressive symptoms and higher cancer-related distress would find this type of information undesirable when engaged in a cancer-related conversation.

Young adult survivors with low levels of perceived social isolation were more likely to find conversations that contained expressions of worry and/or pity to be undesired. In contrast to those with high social isolation, lower levels of social isolation reflect greater contact with others, greater perceived social support, lower feelings of loneliness, and an increased sense of belonging.³³ Therefore, expressions of pity and/or worry in cancer-related conversations among those with low social isolation might threaten their sense of perceived social support and belongingness with their social network.

Alarmingly, previous research has found that social functioning appears to remain low for about one-third of young adult cancer survivors, most notably among survivors with low levels of perceived support and higher levels of psychological distress¹⁴, which aligns with study findings that the presence of psychological distress calls for differing support-related needs.. It is well known that social support can attenuate psychological distress among those with cancer,³ therefore social support networks of distressed and socially isolated young adult survivors may need to take a more active, involved, and supportive approach to cancer-related conversations for that support to be effective.

Young adults report that social support is their primary coping strategy both during and beyond cancer diagnosis and treatment.³⁴ By educating social support networks of preferred and undesirable forms of support-related behaviors and how they might differ given the presence of psychological distress we might not only be able to improve psychological well-being but survival as well, given that epidemiological studies reveal that individuals with stronger social ties live longer compared to those without strong social ties.^35–38 Findings could also be used to encourage and empower young adults to express their support-related wants and desires to their support networks and to talk about their cancer experience. This expression might help young adult survivors to more effectively lean on their social support networks to help support them through difficult cancer-related experiences/challenges that often arise throughout the young adult cancer trajectory.

Theoretical implications of this study add to the literature on social support needs among young adult cancer survivors. It is well understood that helpful and effective forms of support protect individuals from the deleterious effects of a cancer diagnosis³⁹ whereas unhelpful and ineffective types of support lead to increases in psychological distress.⁹ Study findings provide concrete forms of support-related behaviors that young adults prefer when engaged in cancer-related conversations and offer subgroups of individuals who might need more than one form of support (e.g., honest conversation) and less of another (e.g., advice).

The present study is not without limitations. Despite efforts to recruit a diverse sample, the present sample was almost exclusively female with a breast cancer diagnosis and comprised of an older young adult sample. Certain concerns (i.e., parenting concerns) might be more prevalent in an older young adult sample and therefore might be influencing psychological distress as compared to a younger young adult population^13,40. Previous research has suggested that issues of parenting are important concerns that emerge among older young adults.¹⁶It may be beneficial for future research to focus on concerns across different age cohorts within young adults.

Future research should aim to recruit a more diversified sample. At present, given a heavily female sample, findings reveal that females, in our sample, tend to prefer cancer-related conversations that contain emotional support. Other common types of support (e.g., instrumental, informational) were less desired. Additional limitations include cancer diagnosis and treatment not being medical chart verified. The present study is also limited by the fact that young adults were not interviewed, which may have provided greater insight into support-related needs.

Study strengths include a sample of young adults across various stages of treatment and a wide range of time since diagnosis. While these factors are often considered limitations, we found that support-related themes did not differ among young adult survivors at different stages of diagnosis and treatment suggests that the needs and preferences for support among young adults are robust and applicable across the newly diagnosed to survivors’ years out from diagnosis. Further, study findings add to the emerging research with an exclusive focus on a cancer diagnosis during young adulthood which encompasses alterations to social relationships and disrupted milestones due to cancer that are uniquely different than adolescent cancer survivors ^12,41. Drawing on these findings, future studies might focus on examining how preferred and undesirable support-related behaviors might differ across support members, cancer-related concerns, and/or timing of the conversation. For example, young adult survivors might be more receptive to advice coming from a parent vs. a friend, or more appreciative of cancer-related conversations among close friends close to diagnosis vs. acquaintances.

Taken together, our results offer insight into what young adult survivors prefer and desire from their support networks when engaging in cancer-related conversations and how this might differ as a function of psychological distress. Findings provide a blueprint for support networks navigating a cancer diagnosis and subsequent cancer-related concerns that arise across the trajectory of survivorship. Study findings have clinical and practical implications for working with young adult cancer survivors. Remaining connected to one’s social support network through support-related behaviors allows young adults to maintain a sense of normalcy and to feel loved, cared for, and understood which is vital coping tool for young adult survivors, contributing to increases in resilience, self-esteem, and confidence throughout the cancer experience.^42–45