Counseling Preferences of Young Adults with Cancer
Jessica Z. Taylor, Susan Kashubeck-West
This study examined preferences for counseling topics to discuss in individual, group, and family counseling among young adults with cancer, as well as their ranked preferences for attending individual, group, and family counseling. A sample of 320 young adults with cancer (18–39 years old) completed an online survey containing items relevant to young adults’ psychosocial needs. Participants rated anxiety, finances, sad feelings, sexual and intimacy concerns, and stress management as most helpful for individual counseling; finding social support and getting information about one’s medical situation as most helpful for group counseling; and no topics as most helpful for family counseling. Participants rated individual counseling as their primary choice of counseling modality, followed by group counseling, and lastly family counseling. Counselors may help young adult clients by familiarizing themselves with the unique experience of being diagnosed with cancer at an early age, as well as providing age-specific in-person support and counseling group opportunities.
Keywords: cancer, young adult, counseling preferences, counseling modality, psychosocial needs
The leading disease-related cause of death for adolescents and young adults is cancer, with almost 70,000 individuals newly diagnosed each year (Nass et al., 2015). Adolescents and young adults with cancer have specific psychosocial needs that are not the same as those of adults with cancer, yet we know comparatively little about those needs. In 2006, the National Cancer Institute called for research on the specific psychosocial needs of adolescents and young adults diagnosed with cancer. In 2013, an Institute of Medicine workshop reviewed the progress made since 2006 and reported that many challenges remained (Nass et al., 2015). Zebrack (2011) stated that developing age-appropriate support services would benefit adolescents’ and young adults’ psychosocial well-being. For young adults with cancer, having a counselor that is knowledgeable about their unique psychosocial needs is especially important (Katz, 2015). Psychosocial needs and concerns related to quality of life may include relationships with others, emotions, body image, and spirituality (Sodergren et al., 2017). Indeed, young adults with cancer experience psychosocial and supportive care needs that are “not only unique to their age group but also broader in scope and more intense than those at any other time in life” (Bleyer & Barr, 2009, p. 204). These individuals need to be a priority for counseling researchers, and we should be attuned to young adults’ particular psychosocial needs and desires for counseling to help them as much as possible (Kumar & Schapira, 2013). Therefore, this study was designed to examine the perceived counseling needs of young adults with cancer.
We focused on individuals aged 18–39 because they have been shown to be developmentally different from adolescents (e.g., Arnett, 2000) and because they often have been lumped in with adolescents in research on their mental health needs (Haase & Phillips, 2004; National Cancer Institute, 2006). Although there are some similarities between adolescents and young adults with cancer in terms of psychosocial needs (Husson et al., 2017; Nass et al., 2015; Sender & Zabokrtsky, 2015; Sodergren et al., 2017), a growing discussion emphasizes the importance of exploring psychosocial needs across developmental age groups within the adolescent and young adult age range. This discussion especially focuses on the need for developing appropriate counseling and other psychosocial services (Fasciano, Souza, Braun, & Trevino, 2015; Iannarino, Scott, & Shaunfield, 2017; Katz, 2014, 2015; Salsman et al., 2014; Smith et al., 2013).
Generally, literature addressing the mental health needs and service usage of individuals with cancer is more abundant for older adults and for young adult survivors of childhood cancer, rather than for young adults diagnosed with cancer between the ages of 18 and 39 (Rabin, Simpson, Morrow, & Pinto, 2011). The research on the mental health needs of and service usage by adult cancer survivors older than 40 years of age suggests that they have a lower desire for, and utilization of, counseling services than do young adults with cancer (Gadalla, 2007; Hewitt & Rowland, 2002; Mosher et al., 2014). This need is largely unmet in the young adult population, in part because they may encounter difficulties affording counseling services (Hewitt & Rowland, 2002) or locating counseling services designed specifically for young adults with cancer (Marris, Morgan, & Stark, 2011; Zebrack, 2009).
Furthermore, there has been little research on the topics young adults with cancer would find beneficial to discuss in counseling or on the counseling modalities in which young adults with cancer would like to discuss specific topics. The current study’s authors previously conducted the first-known study (Taylor & Kashubeck-West, 2013) to ask young adults with cancer to rate the helpfulness of specific topics of discussion across different counseling modalities (i.e., individual, group, and family counseling). A sample of 151 young adults with cancer rated 11 items as helpful to discuss in individual counseling: (a) stress management and/or anxiety; (b) putting your own needs before others’ needs; (c) negative self-talk and sad feelings; (d) positive thinking; (e) living day to day; (f) trying to live a “normal” life; (g) finances; (h) partner concerns; (i) sexual and intimacy concerns; (j) finding social support; and (k) concerns with family. Participants identified the topic of trying to live a “normal” life as the most helpful individual counseling topic and alcohol or drug use as the least helpful topic of discussion. Within-group differences were found in that emerging adults (i.e., between the ages of 18–29 [Arnett, 2000]) rated the topic regarding thoughts about continuing or resuming education as significantly more helpful to discuss in individual counseling than did young adults (i.e., between the ages of 30–39 [Arnett, 2000]). Young adults rated the topic regarding partner concerns as significantly more helpful to discuss in individual counseling than did emerging adults. These findings seem to reflect age-related developmental tasks.
Taylor and Kashubeck-West (2013) also found that when asked to rate helpful topics for group counseling, young adults with cancer rated six topics on a group counseling needs assessment as helpful to discuss in group counseling with other young adults with cancer: (a) talking about feelings; (b) sharing medical information; (c) finding different ways to think about and cope with the experience; (d) finding meaning and purpose from the experience; (e) discussing concerns about intimate relationships; and (f) discussing concerns about casual relationships. These findings are consistent with Zebrack, Bleyer, Albritton, Medearis, and Tang (2006), who found that young adults with cancer ranked the opportunity to meet other young adults with cancer as being one of their top supportive care needs, regardless of whether young adults with cancer were currently receiving or had completed medical treatment.
Young adults with cancer may attempt to protect the feelings of family members and others by not wanting to discuss their diagnosis or negative feelings about it (Hilton, Emslie, Hunt, Chapple, & Ziebland, 2009; MacCormack et al., 2001), suggesting a hesitancy to fully utilize family counseling. When Taylor and Kashubeck-West (2013) asked participants to rate how helpful 19 different topics would be to discuss in family counseling, only two topics were rated as being helpful: stress management and accepting the new “normal.” Not only did young adults with cancer rate the fewest items as helpful to discuss in family counseling, dating concerns—a relational topic—was identified as the topic young adults with cancer least wanted to discuss in family counseling. Developmentally, as young adults with cancer work to gain independence from their family (Arnett, 2000), they may not see family counseling as an appealing option for supportive care.
The purpose of this study was to further examine the preferences of young adults with cancer for counseling topics and counseling modalities. This study builds on the 2013 study by Taylor and Kashubeck-West by using a larger sample of young adults with cancer, recruiting from a greater number of sources, and including more psychosocial concerns relevant to young adults with cancer using a counseling needs assessment tool. In extending previous exploratory work on this topic, this descriptive study had two primary goals: (a) to gain greater clarity of young adults’ preferences for topics to discuss in individual, group, and family counseling; and (b) to understand young adults’ preferences for these three counseling modalities. The results of this study provide counselors with helpful information as they attempt to meet the counseling needs of young adults with cancer.
Participants were 320 young adults with cancer currently between the ages of 18 and 39, initially diagnosed with cancer at age 18 or older, and living in the United States. Descriptive analyses (see Table 1) showed that a majority of the sample identified as female (86%), Caucasian/White (87%), and heterosexual (94%). The mean age of the sample was 31.17 years old (range 18–39 years; SD = 5.14). A majority of participants were partnered or in a committed relationship (68%), 71% had obtained at least an undergraduate degree, and 66% were currently employed, with approximately 17% unemployed and 17% on medical or disability leave. Participants in the sample reported living in 41 states and Washington, D.C.
Approximately half of the participants (51%) reported that they had received counseling from a mental health professional (e.g., counselor, social worker, psychologist, psychiatrist, pastor, or priest) since their initial cancer diagnosis. A majority of participants (66%) had tried to find a local in-person support group for young adults initially diagnosed with cancer during young adulthood, but less than half (48%) were successful in finding a local group.
On average, participants in the current sample were initially diagnosed with cancer at 27.76 years old (range 18–38 years; SD = 5.34). Participants reported 26 different initial cancer diagnoses, with seven diagnoses being reported more frequently: (a) Breast (29%), (b) Brain (16%), (c) Hodgkin’s Lymphoma (10%), (d) Thyroid (10%), (e) Leukemia (8%), (f) Non-Hodgkin’s Lymphoma (7%), and (g) Testicular (5%). A majority of participants (70%) reported they had completed medical treatment; 29% were currently receiving medical treatment. Of participants who had completed medical treatment, the mean number of months since completing treatment was 32.68 (range 0–192; SD = 36.31).
Most participants (78%) reported no recurrence of cancer. Of those who did have a recurrence (n = 69), the mean age at recurrence was 30.00 years old (range 19–38 years; SD = 5.44) and the mean duration of time between initial cancer diagnosis and recurrence was 2.06 years (range 0–10 years; SD = 1.88).
All study procedures were approved by the university Institutional Review Board. Participants were recruited from cancer organizations based in the United States relevant to young adults with
Characteristics of Study Participants (N = 320)
Male 45 (14.1)
Female 275 (85.9)
Caucasian/White 279 (87.2)
African American/Black 10 (3.1)
Asian American 11 (3.4)
Hispanic/Latina(o) 28 (8.8)
Native American 3 (0.9)
Other 5 (1.6)
Current Socioeconomic Status
Lower Class/Working Class 52 (16.3)
Lower Middle Class 73 (22.9)
Middle Class 148 (46.4)
Upper Middle Class 42 (13.2)
Upper Class 4 (1.3)
Heterosexual 297 (94.3)
Bisexual 12 (3.8)
Gay/Lesbian 6 (1.9)
Highest Level of Education
Did Not Complete High School 1 (0.3)
Completed High School/GED 13 (4.1)
Some College 77 (24.1)
Obtained Undergraduate Degree 122 (38.2)
Some Graduate School 31 (9.7)
Obtained Master’s Degree 63 (19.7)
Obtained a Doctorate 12 (3.8)
Stage/Grade of Initial Cancer Diagnosis
0 23 (7.5)
1 75 (24.5)
2 108 (35.3)
3 70 (22.9)
4 30 (9.8)
Note. a Totals do not equal 320 because of missing data. b Percentages greater than 100% because of participants being able to select from more than one category. cancer and with an online social media presence. Organizations were asked to post a recruitment solicitation for this study on the organization’s Facebook and Twitter social media websites. In addition to a convenience sample, snowball sampling was used. The recruitment postings invited potential participants to send the study information to other young adults with cancer. Professional contacts with access to young adults with cancer (e.g., cancer support organization program directors, cancer-related non-profit executive directors, and academic professionals with expertise in psychosocial issues experienced by individuals with cancer) also were asked to invite young adults with cancer to participate. Upon completion, participants were invited to participate in a raffle separate from the study survey for one of 20 randomly chosen $10 gift certificates to Amazon.com. Counseling needs assessment items were presented in random order within counseling modality to prevent systematic order effects; similarly, counseling modality was presented randomly.
Counseling needs assessment. Based on a review of the literature and feedback from two young adults with cancer, Taylor and Kashubeck-West (2013) developed three counseling needs assessment tools to explore topics that young adults with cancer might find helpful to discuss in individual, group, and family counseling. Their individual counseling needs assessment contained 31 items (Cronbach alpha = .91), their group counseling needs assessment contained 6 items (Cronbach alpha = .80), and their family counseling needs assessment contained 19 items (Cronbach alpha = .86). Comparisons of topic helpfulness between counseling modalities was limited because of the needs assessments containing different items.
The current study revised Taylor and Kashubeck-West’s (2013) counseling needs assessments into one counseling needs assessment that was used to explore topic helpfulness for each counseling modality to better allow for topic comparisons. Reviewing the literature, soliciting feedback from psychosocial oncology mental health and nursing experts, and consulting with young adults with cancer led to the revised 38-item counseling needs assessment used in the current study. Participants were asked to rate their perception of how helpful each of 38 topics would be to discuss in individual counseling, group counseling, and family counseling. Individual counseling was defined as “attending counseling by yourself” (Cronbach alpha = .96); group counseling was defined as “attending counseling with people you have never met before who also have been diagnosed with cancer between the ages of 18–39 and are currently between the ages of 18–39” (Cronbach alpha = .97); and family counseling was defined as “attending counseling with someone you personally know” (Cronbach alpha = .98). Participants selected their responses on a Likert-based scale ranging from 1 (very unhelpful) to 3 (neither helpful nor unhelpful) to 5 (very helpful) for each of the three counseling modalities. Finally, participants were asked to rank their preferences for counseling modalities, with 1 being their most preferred counseling modality and 3 being their least preferred.
Demographic items. Participants were asked to report their age, gender, race/ethnicity, relationship status, sexual orientation, and current socioeconomic status. Additionally, they were asked about their medical treatment status—whether they were currently in medical treatment for their cancer diagnosis or if they had completed medical treatment—as well as how many months it had been since they completed medical treatment, if applicable. Participants were asked if they had received counseling since their initial cancer diagnosis and whether they had tried to find a local, in-person support group specifically for young adults with cancer. If they had tried to locate a local in-person young adults with cancer group, participants were asked if they had been successful in finding one.
The first goal of this study was to explore the perceived helpfulness of topics for young adults with cancer to discuss in individual counseling, group counseling, and family counseling. A mean helpfulness rating of 3.50 or greater on a 1 to 5 Likert-based scale—on which 3.0 was neither helpful nor unhelpful—was selected as indicating that a topic was rated as helpful to discuss in counseling. Individual counseling and group counseling both had 25 topics rated as helpful, and family counseling had 12 topics rated as helpful. Thus, participants found more than twice as many topics helpful for discussion in individual and group counseling compared to family counseling. See Table 2 for average helpfulness ratings by topic across the three counseling modalities.
Mean Differences Between Counseling Topics Across Counseling Modalities and ANOVA Results
Individual Group Family
Variable M (SD) M (SD) M (SD) N F h2 Power
1. Accepting the new “normal”a 4.15a (.99) 4.22a (.96) 3.86b (1.14) 286 21.76*** .07 1.00
2. Alcohol or drug use 2.65a (1.34) 2.70a (1.29) 2.49b (1.21) 287 5.98** .02 .88
3. Anxietya 4.19a (.99) 4.03b (1.06) 3.77c (1.18) 283 26.39*** .09 1.00
4. Being accepted by others 3.55a (1.14) 3.63a (1.17) 3.26b (1.16) 282 17.30*** .06 1.00
5. Concerns with child(ren)a 3.30a (1.33) 3.30a (1.33) 3.22a (1.41) 280 .92 <.01 .21
6. Concerns with family members 3.45a (1.21) 3.37a (1.22) 3.37a (1.26) 283 .79 <.01 .19
other than partner, parent(s),
sibling(s), or child(ren)
7. Concerns with friend(s) 3.68a (1.07) 3.69a (1.07) 3.35b (1.16) 283 17.50*** .06 1.00
8. Concerns with parent(s)a 3.57a (1.18) 3.50ab (1.22) 3.39b (1.22) 285 3.83* .01 .69
9. Concerns with partner 3.67a (1.21) 3.53ab (1.25) 3.43b (1.28) 288 6.27** .02 .90
10. Concerns with sibling(s) 3.33a (1.22) 3.21a (1.26) 3.24a (1.22) 285 2.04 .01 .42
11. Creating a memorable 3.28a (1.23) 3.29a (1.23) 3.18a (1.27) 285 1.92 .01 .39
document of your life
12. Creating a memorable 3.34a (1.23) 3.32a (1.21) 3.25a (1.27) 286 1.00 <.01 .22
document of your life to share
with loved onesa
13. Dating concernsa 3.11a (1.43) 3.15a (1.44) 2.65b (1.33) 284 28.97*** .09 1.00
14. Finances 3.82a (1.13) 3.65b (1.21) 3.60b (1.25) 285 6.10** .02 .89
15. Finding meaning in lifea 3.61a (1.18) 3.57a (1.17) 3.35b (1.19) 283 10.35*** .04 .99
16. Finding purpose in life 3.60a (1.15) 3.59a (1.17) 3.33b (1.17) 284 12.36*** .04 1.00
17. Finding social support 3.84a (1.08) 4.05b (.99) 3.58c (1.19) 282 24.59*** .08 1.00
18. Finding/making meaning 3.70a (1.10) 3.73a (1.13) 3.48b (1.21) 281 8.91*** .03 .97
from your diagnosisa
19. Getting information about 3.52a (1.17) 3.77b (1.13) 3.51a (1.23) 288 10.55*** .04 .99
your medical situation
20. How and what to tell your 3.16a (1.37) 3.27a (1.31) 3.18a (1.39) 282 2.18 .01 .45
child(ren) about your situation
21. Infertility issues 3.55a (1.35) 3.50a (1.35) 3.17b (1.44) 286 19.01*** .06 1.00
22. Insurance issues 3.63a (1.20) 3.56ab (1.25) 3.40b (1.29) 288 6.09** .02 .89
23. Job situation 3.70a (1.20) 3.55a (1.22) 3.29b (1.24) 286 18.39*** .06 1.00
24. Living day to day 3.78a (1.13) 3.85a (1.13) 3.62b (1.16) 285 6.50** .02 .91
25. Making memories for your 3.37a (1.20) 3.35a (1.24) 3.33a (1.34) 284 .17 <.01 .08
child(ren)/partner/family to have
26. Negative self-talk 3.68a (1.24) 3.68a (1.15) 3.36b (1.20) 283 15.46*** .05 1.00
27. Pacing yourself to prevent
exhaustiona 3.74a (1.14) 3.80a (1.11) 3.52b (1.20) 287 12.27*** .04 1.00
28. Pain and its effect on your life 3.66a (1.11) 3.71a (1.15) 3.47b (1.23) 285 8.82*** .03 .97
29. Positive thinkinga 3.99a (1.03) 3.97a (1.02) 3.72b (1.10) 286 12.88*** .04 1.00
30. Putting your own needs 3.86a (.99) 3.79a (1.02) 3.55b (1.14) 287 15.38*** .05 1.00
before others’ needs
31. Sad feelingsa 4.08a (1.01) 3.85b (1.08) 3.62c (1.19) 288 27.90*** .09 1.00
32. Sexual/intimacy concernsa 3.87a (1.10) 3.44b (1.31) 3.31b (1.38) 286 26.93*** .09 1.00
33. Spiritualitya 3.25a (1.23) 3.25a (1.27) 3.12a (1.21) 284 2.92 .01 .56
34. Stress managementa 4.22a (.97) 4.09b (1.00) 3.84c (1.15) 288 22.78*** .07 1.00
35. Talking more effectively with 3.74a (1.16) 3.79a (1.11) 3.51b (1.24) 288 10.83*** .04 .99
health care professionals
regarding your physical condition
36. Thoughts about 3.32a (1.20) 3.32a (1.23) 3.09b (1.25) 288 10.36*** .04 .99
37. Trusting the doctora 3.45acd (1.17) 3.55ac (1.15) 3.33bcd (1.20) 286 7.31** .03 .93
38. Will/advanced directive concernsa 3.39a (1.18) 3.26a (1.21) 3.33a (1.19) 287 1.83 .01 .38
Note. Power = observed power at α < .05. Means sharing a common subscript are not statistically different at p < .05 according to Bonferroni pairwise comparison tests.
a Greenhouse-Geisser correction utilized for violation of Mauchly’s Test of Sphericity at p < .05 * p < .05; ** p < .01; *** p < .001
Next, we compared participants’ ratings of counseling topic helpfulness among the three counseling modalities. A two-way within-subjects multivariate analysis of variance (MANOVA) was conducted to assess the interaction effect of counseling topic and counseling modality. There was a significant multivariate interaction effect: Pillai’s V = .59, F(74, 144) = 2.77, p < .001, η2 = .59, observed power = 1.00. Given this significant multivariate interaction effect, a one-way within-subjects analysis of variance (ANOVA) was conducted for each of the 38 counseling topics included on the counseling needs assessment tool to better understand which topics were perceived as more helpful to discuss in certain counseling modalities (see Table 2 for ANOVA results).
Participants rated five topics as significantly more helpful to discuss in individual counseling than in the other two counseling modalities: (a) anxiety, (b) finances, (c) sad feelings, (d) sexual and intimacy concerns, and (e) stress management. The two topics (a) finding social support and (b) getting information about your medical situation were rated as being significantly more helpful to discuss in group counseling versus the other two counseling modalities. Finally, participants rated three topics as significantly more helpful to discuss in individual counseling than in family counseling: (a) concerns with parent(s), (b) concerns with partner, and (c) insurance issues. No topics were rated as significantly more helpful to discuss in family counseling than in individual or group counseling.
The second goal of this study was to examine whether there were differences in young adults’ counseling modality preferences. Frequencies and percentages for counseling modality preferences can be found in Table 3. A majority of participants selected individual counseling as their first choice for counseling modality (73%), followed by group counseling (21%), and, finally, family counseling (7%). For second choice, the highest frequency of participants selected group counseling (45%), followed by family counseling (35%), and lastly, individual counseling (21%). For participants’ third choice, family counseling was selected most frequently (59%), followed by group counseling (35%), and lastly, individual counseling (6%).
Counseling Modality Preferences (N = 296)
Individual Counseling 215 (72.6)
Group Counseling 61 (20.6)
Family Counseling 20 (6.8)
Individual Counseling 62 (20.9)
Group Counseling 132 (44.6)
Family Counseling 102 (34.5)
Individual Counseling 19 (6.4)
Group Counseling 103 (34.8)
Family Counseling 174 (58.8)
To explore whether significant differences existed among rankings of preferences for counseling modalities, a one-way within-subjects ANOVA was conducted. In conducting the analysis, Mauchly’s Test of Sphericity was statistically significant (W = .93, p <.001), indicating heterogeneity of covariance matrices across levels of preference rankings for counseling modalities (Meyers, Gamst, & Guarino, 2006). Therefore, a Greenhouse-Geisser correction was utilized for interpreting results. The observed F value was statistically significant: F(1.87, 551.48) = 169.30, p < .001, η2 = .37, observed power = 1.00. Bonferroni pairwise comparison tests (p < .05) demonstrated that participants ranked individual counseling (M = 1.34, SD = .59) significantly higher than group counseling (M = 2.14, SD = .73), which in turn received a significantly higher ranking than family counseling (M = 2.52, SD = .62). Thus, participants ranked attending individual counseling as their first preference for counseling modality, followed by group counseling ranked as their second preference, and finally family counseling ranked as their last preference.
The purpose of this study was to further examine the perceived counseling needs of young adults with cancer with regard to counseling. A paucity of research has studied counseling topic and modality preferences for young adult clients with cancer in depth. Both individual and group counseling had the same number of topics rated as helpful (25/38 topics), and 15 topics were rated as being equally helpful in group or individual counseling. Many of the 15 topics are discussed in the literature as relevant to young adults with cancer: infertility concerns (Eiser, Penn, Katz, & Barr, 2009; Gupta, Edelstein, Albert-Green, & D’Agostino, 2013; Katz, 2015; Kent et al., 2012), the “new normal” (Miedema, Hamilton, & Easley, 2007; Odo & Potter, 2009; Snöbohm, Friedrichsen, & Heiwe, 2010), employment (Katz, 2015; Odo & Potter, 2009; Zebrack, 2011), and pacing oneself to prevent exhaustion (Hauken, Larsen, & Holsen, 2013; Odo & Potter, 2009; Snöbohm et al., 2010), among other developmentally relevant topics. Participants indicated that discussing anxiety, finances, sad feelings, sexual and intimacy concerns, and stress management in individual counseling would be significantly more helpful than discussing these topics in group counseling or family counseling. Perhaps because these topics are fairly unique to one’s specific life context, they may not be topics that would be as helpful to discuss with other family members or with other young adults with cancer. They may be topics that young adults with cancer prefer to gain insight about on their own, with a counselor providing feedback. Alternatively, they may be topics that are perceived as being too sensitive to discuss with others. Especially in regard to financial concerns or sad feelings, perhaps young adults with cancer do not want to worry or burden friends and family with their concerns (Brennan, 2004; MacCormack et al., 2001).
Participants rated the topics of finding social support and getting information about one’s medical situation as significantly more helpful for discussion in group counseling than in individual or family counseling. Group counseling itself can be a way for young adults with cancer to find social support from others who understand their experiences (Kent et al., 2013). In addition, young adults with cancer may use group counseling to solicit advice and brainstorm ideas of how they can enhance their social support system. Even if someone is from a different background, such as a different social class, that person may be able to provide relevant information for increasing social support and interacting with one’s support system. Similarly, getting information about one’s medical situation is a topic that is not as context-specific as some of the topics rated as helpful to discuss in individual counseling (e.g., finances). Speaking with other young adults with cancer about one’s medical experience and soliciting information about their medical experiences may be beneficial.
Consistent with Taylor and Kashubeck-West’s (2013) findings, family counseling did not have any topics that were rated as more helpful to discuss in family counseling than in the other two counseling modalities. In addition, a few notable instances of family-relevant topics were rated significantly more helpful for discussion in individual counseling than in family counseling. These topics included discussing concerns about one’s parents, concerns about one’s partner, and insurance issues. Although the topics discussing concerns with parents or with a partner may seem best suited for discussion in family or couples counseling, young adults with cancer were significantly more interested in discussing these concerns in individual counseling. Perhaps young adults with cancer do not want to appear ungrateful to others and would prefer to utilize individual counseling as a way to express frustration or as a way to consider alternative ways of interaction. This possibility would be consistent with MacCormack et al.’s (2001) finding that adult cancer survivors tend to prefer discussing concerns regarding family members in individual counseling rather than in family counseling.
This study also explored how young adults with cancer would rank preferences for counseling modality. Descriptive frequencies indicated that a strong majority of participants (73%) chose individual counseling as their first choice of counseling modality over group counseling or family counseling. Examining helpful counseling topics may be beneficial in understanding this result. Topics rated as more helpful to discuss in individual counseling than in other forms of counseling tended to be topics more specific to one’s life context, such as financial concerns. Additionally, the topics involved feelings that may be perceived as negative feelings, such as anxiety, sadness, and stress. Topics chosen as most helpful to discuss in group counseling did not share the same underlying affective nature, but were related more to asking other young adults with cancer for their advice, experiences, and support. Counselors and other professionals should consider young adults’ emotional state and purpose for attending counseling when recommending utilization of individual or group counseling. This study provides evidence that young adults with cancer do not particularly prefer family counseling or feel that discussing many topics in family counseling would be helpful. Developmental tasks during young adulthood, such as gaining independence from one’s family of origin, may contribute to this.
Implications for Counselors
Because participants in this study selected individual counseling as their first choice for counseling modality, counselors need to familiarize themselves with what young adults with cancer may want to discuss in individual counseling, as well as how a young adult may experience a cancer diagnosis during young adulthood. Katz’s (2014, 2015) two books focusing on the psychosocial lived experience of young adults with cancer would be a beneficial starting point for counselors to familiarize themselves with relevant issues. When first exploring the concerns of clients who are young adults with cancer, counselors can begin by examining relevant developmental concerns related to the five counseling topics young adults with cancer in this study rated as being most helpful to discuss in individual counseling. Because the identified helpful topics relate primarily to emotions, an emotion-focused therapeutic approach (Greenberg, 2004) may be beneficial for young adult clients. Taylor, Hutchison, and Cottone (2013) reviewed three existentially based individual counseling models for adult cancer survivors that counselors may consider based on their young adult clients’ needs: (a) dignity therapy, (b) meaning-making intervention, and (c) short-term life review.
An implication of this study for counselors relating to group counseling involves the limited availability of support groups for young adults initially diagnosed with cancer in young adulthood (Kumar & Schapira, 2013). Of the study participants who looked for a young adult cancer support group, less than half were successful in finding one. Young adults may then turn to the Internet to find support, but even then they may not be successful in locating the type of support they need (Cohen, 2011). More local support groups for young adults diagnosed with cancer during young adulthood are needed to provide them with a uniquely powerful experience in which they are heard and understood by others like them, rather than by others much younger or older. Additionally, local counseling groups for young adults with cancer diagnosed during young adulthood that are led by counselors who understand their psychosocial concerns are needed. Taylor et al. (2013) reviewed four existentially based group counseling models for adult cancer survivors that counselors may consider based on their young adult clients’ needs: (a) cognitive-existential group therapy, (b) self-transcendence group therapy (c) meaning-centered group psychotherapy, and (d) supportive-expressive group therapy.
Participants’ lack of interest in the family counseling modality is an interesting result of this study. This result is supported by MacCormack et al.’s (2001) finding that many adults with cancer try to protect their friends and families by not sharing all of their emotional experiences with them. Rather than make general recommendations for clients who are young adults with cancer to participate in family counseling, counselors may want to make such recommendations on an individualized basis after thoroughly exploring clients’ psychosocial needs and preferences. Young adults with cancer are in a developmental period in which they are striving to live as independent adults (Arnett, 2000). A counselor suggesting that a young adult client with cancer participate in family counseling may be perceived as a suggestion that the client is unsuccessfully navigating this developmental period. For young adults who are interested in family counseling, a biopsychosocial approach guided by a medical family therapy framework (McDaniel, Hepworth, & Doherty, 1992) may be worth considering. This study can aid counselors in formulating hypotheses for what young adults with cancer may perceive as beneficial in different counseling modalities, as well as what types of counseling these clients would find helpful.
Implications for Future Research
Utilizing qualitative research methods may be especially helpful for future researchers (Kent et al., 2012) in continuing to explore young adults’ preferences for counseling topics in different counseling modalities. Researchers could incorporate the counseling topics included in this study in their interview questions to further explore these psychosocial areas, as well as to discover additional helpful counseling topics. Inquiring about the results of the counseling modality preferences in a qualitative study also could lead to further understanding about the contexts behind selecting one modality over another.
Additionally, research exploring how counseling can increase quality of life for young adults with cancer would be a significant contribution to the literature. Quinn, Gonçalves, Sehovic, Bowman, and Reed’s (2015) systematic review of the literature revealed a dearth of evidence-based approaches to enhance quality of life for adolescents and young adults with cancer. Because an experimental or quasi-experimental research design would be necessary to interpret whether counseling leads to an increase in quality of life, conducting such a research study would be complex and costly. But, a research study following up on these results to examine whether discussion of certain topics, participation in different counseling modalities, or particular counseling models can increase quality of life for young adults with cancer would greatly benefit the development of evidence-based psychosocial services for young adults with cancer.
Mono-method bias was an inherent limitation to this study because of the sole use of self-report for data collection. Additional limitations include the use of a convenience sample, as well as lack of diversity among the participant characteristics of gender and race. Furthermore, the possibility exists that there are other counseling topics that young adults with cancer would find helpful to discuss in counseling that were not included on this study’s counseling needs assessment tool. Finally, if participants had never experienced one or more of the included counseling modalities, they may have been unsure about their perception of how helpful topics would be to discuss in those modalities or how they would rate their modality preferences.
The purpose of this study was to examine the perceived counseling needs of young adults with cancer. This study resulted in clarifying topics young adults with cancer would find helpful to discuss in individual counseling, group counseling, and family counseling. Young adults rated anxiety, finances, sad feelings, sexual and intimacy concerns, and stress management as most helpful for individual counseling; finding social support and getting information about one’s medical situation as most helpful for group counseling; and no topics as most helpful for family counseling. This study also found that young adults with cancer ranked individual counseling as their first choice for counseling modality, followed by group counseling and family counseling. Counselors and other mental health professionals can use these results as starting points for therapeutic conversations in various counseling modalities, creating treatment plans, establishing in-person groups, and developing evidence-based psychosocial programming and services for young adults with cancer in a variety of medical and supportive care settings.
Conflict of Interest and Funding Disclosure
The authors reported no conflict of interest or funding contributions for the development of this manuscript.
Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469–480. doi:10.1037//0003-066X.55.5.469
Bleyer, A., & Barr, R. (2009). Cancer in young adults 20 to 39 years of age: Overview. Seminars in Oncology, 36, 194–206. doi:10.1053/j.seminoncol.2009.03.003
Brennan, J. (2004). Cancer in context: A practical guide to supportive care. Oxford, UK: Oxford University Press.
Cohen, J. (2011). Social support received online and offline by individuals diagnosed with cancer (Doctoral dissertation). Retrieved from http://scholarscompass.vcu.edu/cgi/viewcontent.cgi?article=3508&context=etd
Eiser, C., Penn, A., Katz, E., & Barr, R. (2009). Psychosocial issues and quality of life. Seminars in Oncology, 36, 275–280. doi:10.10531j.seminoncol.2009.03.005
Fasciano, K. M., Souza, P. M., Braun, I., & Trevino, K. (2015). An innovative website in the United States for meeting the emotional and supportive care needs of young adults with cancer. Journal of Adolescent and Young Adult Oncology, 4, 44–49. doi:10.1089/jayao.2014.0035
Gadalla, T. M. (2007). Cancer patients’ use of social work services in Canada: Prevalence, profile, and predictors of use. Health & Social Work, 32, 189–196. doi:10.1093/hsw/32.3.189
Greenberg, L. S. (2004). Emotion-focused therapy. Clinical Psychology & Psychotherapy, 11, 3–16. doi:10.1002/cpp.388
Gupta, A. A., Edelstein, K., Albert-Green, A., & D’Agostino, N. (2013). Assessing information and service needs of young adults with cancer at a single institution: The importance of information on cancer diagnosis, fertility preservation, diet, and exercise. Supportive Care in Cancer, 21, 2477–2484.
Haase, J. E., & Phillips, C. R. (2004). The adolescent/young adult experience. Journal of Pediatric Oncology Nursing, 21, 145–149. doi:10.1177/1043454204264385
Hauken, M. A., Larsen, T. M. B., & Holsen, I. (2013). Meeting reality: Young adult cancer survivors’ experiences
of reentering everyday life after cancer treatment. Cancer Nursing, 36, E17–E26.
Hewitt, M., & Rowland, J. H. (2002). Mental health service use among adult cancer survivors: Analyses of the National Health Interview Survey. Journal of Clinical Oncology, 20, 4581–4590.
Hilton, S., Emslie, C., Hunt, K., Chapple, A., & Ziebland, S. (2009). Disclosing a cancer diagnosis to friends and family: A gendered analysis of young men’s and women’s experiences. Qualitative Health Research, 19, 744–754. doi:10.1177/1049732309334737
Husson, O., Zebrack, B., Block, R., Embry, L., Aguilar, C., Hayes-Lattin, B., & Cole, S. (2017). Personality traits and health-related quality of life among adolescent and young adult cancer patients: The role of psychological distress. Journal of Adolescent and Young Adult Oncology, 6, 358–362.
Iannarino, N. T., Scott, A. M., & Shaunfield, S. L. (2017). Normative social support in young adult cancer survivors. Qualitative Health Research, 27, 271–284. doi:10.1177/1049732315627645
Katz, A. (2014). This should not be happening: Young adults with cancer. Pittsburgh, PA: Oncology Nursing Society.
Katz, A. (2015). Meeting the need for psychosocial care in young adults with cancer. Pittsburgh, PA: Oncology Nursing Society.
Kent, E. E., Parry, C., Montoya, M. J., Sender, L. S., Morris, R. A., & Anton-Culver, H. (2012). “You’re too young for this”: Adolescent and young adults’ perspectives on cancer survivorship. Journal of Psychosocial Oncology, 30, 260–279. doi:10.1080/07347332.2011.644396
Kent, E. E., Smith, A. W., Keegan, T. H. M., Lynch, C. F., Wu, X.-C., Hamilton, A. S., . . . Harlan, L. C. (2013). Talking about cancer and meeting peer survivors: Social information needs of adolescents and young adults diagnosed with cancer. Journal of Adolescent and Young Adult Oncology, 2, 44–52.
Kumar, A. R., & Schapira, L. (2013). The impact of intrapersonal, interpersonal, and community factors on the identity formation of young adults with cancer: A qualitative study. Psycho-Oncology, 22, 1753–1758. doi:10.1002/pon.3207
MacCormack, T., Simonian, J., Lim, J., Remond, L., Roets, D., Dunn, S., & Butow, P. (2001). “Someone who cares”: A qualitative investigation of cancer patients’ experiences of psychotherapy. Psycho-Oncology, 10, 52–65. doi:10.1002/1099-1611(200101/02)10:1<52::AID-PON489>3.0.CO;2-V
Marris, S., Morgan, S., & Stark, D. (2011). “Listening to patients”: What is the value of age-appropriate care to teenagers and young adults with cancer? European Journal of Cancer Care, 20, 145–151.
McDaniel, S. H., Hepworth, J., & Doherty, W. J. (1992). Medical family therapy. New York, NY: Basic Books.
Meyers, L. S., Gamst, G., & Guarino, A. J. (2006). Applied multivariate research: Design and interpretation. Thousand Oaks, CA: Sage.
Miedema, B., Hamilton, R., & Easley, J. (2007). From “invincibility” to “normalcy”: Coping strategies of young adults during the cancer journey. Palliative and Supportive Care, 5, 41–49. doi:10.1017/S147895150707006X
Mosher, C. E., Winger, J. G., Hanna, N., Jalal, S. I., Fakiris, A. J., Einhorn, L. H., . . . Champion, V. L. (2014). Barriers to mental health service use and preferences for addressing emotional concerns among lung cancer patients. Psycho-Oncology, 23, 812–819. doi:10.1002/pon.3488
Nass, S. J., Beaupin, L. K., Demark-Wahnefried, W., Fasciano, K., Ganz, P. A., Hayes-Lattin, B., . . . Smith, A. W. (2015). Identifying and addressing the needs of adolescents and young adults with cancer: Summary of an Institute of Medicine workshop. The Oncologist, 20, 186–195. doi:10.1634/theoncologist.2014-0265
National Cancer Institute. (2006). Closing the gap: Research and care imperatives for adolescents and young adults with cancer (NIH Publication No. 06-6067). Retrieved from https://www.cancer.gov/types/aya/research/ayao-august-2006.pdf
Odo, R., & Potter, C. (2009). Understanding the needs of young adult cancer survivors: A clinical perspective. Oncology, 23, 23–27.
Quinn, G. P., Gonçalves, V., Sehovic, I., Bowman, M. L., & Reed, D. R. (2015). Quality of life in adolescent and young adult cancer patients: A systematic review of the literature. Patient Related Outcome Measures, 6, 19–51. doi:10.2147/PROM.S51658
Rabin, C., Simpson, N., Morrow, K., & Pinto, B. (2011). Behavioral and psychosocial program needs of young adult cancer survivors. Qualitative Health Research, 21, 796–806. doi:10.1177/1049732310380060
Salsman, J. M., Garcia, S. F., Yanez, B., Sanford, S. D., Snyder, M. A., & Victorson, D. (2014). Physical, emotional, and social health differences between posttreatment young adults with cancer and matched health controls. Cancer, 120, 2247–2254. doi:10.1002/cncr.28739
Sender, L., & Zabokrtsky, K. B. (2015). Adolescent and young adult patients with cancer: A milieu of unique features. Nature Reviews Clinical Oncology, 12, 465–480. doi:10.1038/nrclinonc.2015.92
Smith, A. W., Parsons, H. M., Kent, E. E., Bellizzi, K., Zebrack, B. J., Keel, G., . . . AYA HOPE Study Collaborative Group. (2013). Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: The AYA HOPE study. Frontiers in Oncology, 3, 1–11.
Snöbohm, C., Friedrichsen, M., & Heiwe, S. (2010). Experiencing one’s body after a diagnosis of cancer—A phenomenological study of young adults. Psycho-Oncology, 19, 863–869. doi:10.1002/pon.1632
Sodergren, S. C., Husson, O., Robinson, J., Rohde, G. E., Tomaszewska, I. M, Vivat, B., . . . Darlington, A.-S. (2017). Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer. Quality of Life Research, 26, 1659–1672. doi:10.1007/s11136-017-1520-x
Taylor, J. Z., Hutchison, B., & Cottone, R. R. (2013). Existentially-based individual and group counseling models for adult cancer survivors. In Ideas and research you can use: VISTAS 2013. Retrieved from https://www.counseling.org/docs/default-source/vistas/existentially-based-individual-and-group-counseling-models-for-adult-cancer-survivors.pdf?sfvrsn=6f55403_10
Taylor, J. Z., & Kashubeck-West, S. (2013, March). Young adult cancer survivors’ counseling preferences. Poster presented at the 2013 American Counseling Association Conference, Cincinnati, OH.
Zebrack, B. J. (2009). Information and service needs for young adult cancer survivors. Supportive Care in Cancer, 17, 349–357. doi:10.1007/s00520-008-0469-2
Zebrack, B. J. (2011). Psychological, social, and behavioral issues for young adults with cancer. Cancer, 117, 2289–2294. doi:10.1002/cncr.26056
Zebrack, B. J., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer, 107, 2915–2923. doi:10.1002/cncr.22338
Jessica Z. Taylor is an assistant professor at Central Methodist University. Susan Kashubeck-West is a professor and Associate Dean for Research at the University of Missouri–St. Louis. The authors would like to thank Hope for Young Adults with Cancer and the College of Education at the University of Missouri–St. Louis for their contributions of incentives for randomly selected study participants.Correspondence can be addressed to Jessica Taylor, Central Methodist University, 2458 Old Dorsett Road, Suite 200, Maryland Heights, MO 63043, email@example.com.