Sexual and Romantic Relationships: Experiences of Adolescent and Young Adult Cancer Survivors

Abstract

This study examined the quality and satisfaction of sexual/romantic relationships of adolescents/young adults (AYAs) who recently completed cancer treatment. AYAs between 16 and 26 years old (62.5% female) and less than 24 months post-treatment were interviewed using the Psychosocial Adjustment to Illness Scale (PAIS) interview. Of 43 participants, 16 (37.2%) were in a relationship at time of the interview; eight (50%) reported minor relationship/sexual difficulties. AYAs identified emotional support with their partner as positive aspects of their relationships, and described relational conflict associated with communication difficulties and loss of sexual interest. Better understanding the factors that enable healthy relationships warrants further exploration.

Romantic and sexual relationships play an important developmental role in emerging adulthood.¹ Successfully navigating these relationships is vital for well-being and behavioral adjustment, and may also be predictive of later relationships and marriage in adulthood.^1,2

For adolescents and young adults (AYAs), an ill-defined age, ranging from as young as 10 years old (World Health Organization)³ to 39 years old (National Cancer Institute),⁴ a cancer diagnosis may hinder the normal development of healthy intimacy and romantic relationships in survivorship.^5,6 AYA and childhood cancer survivors may have difficulties developing and maintaining close relationships, demonstrated by being older at the time of their first relationship, and marrying less frequently than the normal population.^7,8 Due to medical implications and an interference in age-appropriate social interactions, cancer treatment during childhood or adolescence may delay sexual maturity and result in sexual dysfunction.^9,10 Research has suggested that AYA survivors may experience concerns with their sexual functioning and sexual desire/interest.⁵ Childhood cancer survivors report engaging in less sexual intercourse than age-matched controls,⁹ experiencing lower sexual interest, desire, arousal, and satisfaction several years post-treatment,⁹ and AYA patients and survivors often experience a poorer body image and sense of “sexual-self.”^11–13

How sexual and relationship difficulties emerge and evolve for AYAs in early survivorship remains unclear. Given the importance of interpersonal relationships during the AYA years, it is crucial that the impact of cancer on relationships and sexual functioning for AYAs be further explored. Through a mixed-methods study, the aim was to understand better how AYAs in early survivorship perceive the quality of their interpersonal relationships and sexual functioning/satisfaction in reference to their cancer experience.

Method

Participants and recruitment

AYAs aged between 15 and 25 years at time of recruitment who had completed cancer treatment within the past 24 months were recruited. The age range used to define AYAs is based on Cancer Australia's definition.¹⁴ Interview and demographic/medical data collected between February 2013 and October 2015 formed the baseline data for a larger intervention study, Recapture Life.¹⁵ Participants were recruited from hospitals around Australia via mailed invitation packages. Participants opted in to the main study by returning their consent form. The study coordinator then completed an intake call, organized a suitable time for the interview, and emailed a questionnaire. Ethical approval was received from the South Eastern Sydney Local Health District Human Research Ethics Committee (12/068). For socio-demographic and medical variables, see Table 1.

Table 1.

Demographic Characteristics of Participants (N = 43)

	In a relationship, N = 16 (38.1%)	Single, N = 27 (62.8%)	Group differences ^b
Sex	10 females (62.5%)	12 females (44.4%)	F = 1.571, p = 0.347
Mean age at interview in years (SD), range	22.09 (2.84), 16.96–26.11	20.75 (3.11), 15.26–26.02	t = −1.384, p = 0.174
Mean age at diagnosis of survivor (SD), range	19.67 (3.70), 11–25^a	18.79 (3.12), 13–25^a	t = −0.794, p = 0.433
Mean time (in months) since treatment completion (SD), range	9.69 (4.98), 1–19	8.20 (5.76), 1–25	t = −1.334, p = 0.191
Cancer diagnosis
Solid	6 (37.5%)	11 (40.7%)	F = 1.607, p = 0.556
Blood	7 (43.8%)	16 (59.3%)
Brain	2 (12.5%)	1 (3.7%)
Highest level of education (%)
Year 12 or below	8 (50.0%)	17 (63.0%)	F = 1.666, p = 0.413
University or post-grad	5 (31.3%)	4 (14.8%
Other (e.g., Tafe, Apprenticeship)	2 (12.5%)	4 (14.8%)
Missing	1 (6.3%)	1 (2.7%)
Employment status (%)
Employed	8 (50.0%)	13 (48.1%)	F = 1.938, p = 0.402
Unemployed	5 (31.3%)	5 (18.5%)
Student	2 (12.5%)	8 (29.7%)
Missing	1 (6.3%)	1 (2.7%)

Participants only provided approximate ages (i.e., age in years, not in months).

Group differences analyzed using independent t-tests, except for categorical data where chi-square and Fisher's exact tests were used.

Interview

After obtaining informed consent, participants completed the Psychosocial Adjustment to Illness Scale (PAIS) interview¹⁶ via telephone with a research officer (E.R., E.D., or S.E.). The PAIS is psychometrically sound, and explores the psychological and social adjustment of patients to their illness via 46 items categorized into seven domains (healthcare orientation, vocational environment, domestic environment, sexual relationships, extended family relationships, social environment, and psychological distress).¹⁶ AYAs in a relationship at the time of the interview completed the PAIS Sexual Relationship section (see Appendix 1 for items). All participants were first asked whether they would feel comfortable answering questions regarding their interpersonal sexual relationships. The interviewer also explained that “sex” could refer to “cuddling, kissing, or any type of physical intimacy.” Participants responded in reference to the last 30 days. This section includes five questions addressing changes in the quality of sexual relationships, sexual interest, frequency of sexual activity, sexual satisfaction, and interpersonal conflict attributable to their illness. Interviewers also scored responses on a 0–3 Likert scale (0 = none, 3 = significant) according to the PAIS scoring system.¹⁶ (Scores of 1 = slight difficulties; a combination of 1 and 2 scores = slight to moderate difficulties; scores of 2 = moderate difficulties; scores of 3 = extreme difficulties).

This study used a mixed-methods approach. Interviews were recorded, transcribed verbatim, and coded line-by-line in NVivo, using the Miles and Huberman framework.¹⁷ The chi-square test, Fischer's exact test, and independent t-tests were employed to determine any differences between participants in a relationship and those not in a relationship.

Results

Participants

Of the 48 AYAs who opted in to Recapture Life, 43 completed the PAIS (89.6%). Of these, 16 (37.2%) were in a relationship, with no demographic differences evident between groups (Table 1). The average relationship length was 19.3 months (range 2–36 months; SD = 11.80). The average interview was 41.7 minutes long (range 24–69 minutes; SD = 13.7).

Sexual and romantic relationships of AYAs

The key themes identified from the interviews included benefit/detriment to being in a relationship, sexual-related issues experienced, and conflict with a partner (see Table 2 for illustrative quotes). Eight AYAs (8/16; 50.0%) reported no relationship difficulties (i.e., quality of their sexual relationship and interpersonal conflict) or sexual difficulties (i.e., sexual interest, frequency of sexual activity, and sexual satisfaction). Across all of the domains (quality of their sexual relationship, sexual interest, frequency of sexual activity, sexual satisfaction, and interpersonal conflict attributed to their cancer), seven AYAs (7/8; 87.5%) reported at least one slight difficulty, and one (1/8; 12.5%) reported slight to moderate difficulties across all the domains. The most frequently reported difficulties included interpersonal conflicts due to sexual difficulties (6/8; 75.0%) and a loss of sexual interest (5/8; 62.5%). Table 2 summarizes illustrative quotes.

Table 2.

Illustrative Quotes from General Concepts Identified

Concept	Participant quotes ^a
Benefits of being in a relationship	“No it [cancer] didn't [lead to any problems in the relationship], it actually sort of strengthened the relationship” (ID1, 16-year-old female)“He was really helpful emotionally. He was always there when I could talk and stuff” (ID2, 18-year-old female)“She was really good throughout it all and was there for me pretty much for all of it” (ID3, 19-year-old male, diagnosed at 18 years old)“She stayed with me and supported me through it all, so I guess it's actually made us closer … She's totally understanding. I just told her I guess it [sexual difficulties] must be from the medicine. And she said, ‘Yeah, I guess it probably is because we are really close.’ She is truly understanding. There's been no conflict really because of that which is good” (ID4, 19-year-old male)
Sexual-related issues	“And I find that I'm not performing as I was before. Due to medication or what not I guess. I haven't really talked to my doctor about that, so I couldn't say for sure that's what it is … but I'm noticing a difference in being able to be intimate” (ID4, 19-year-old male)“I've found I don't get the pleasure as much out of things, which is kind of scary. It's very weird … It must be due to the illness because I feel the same way toward my girlfriend as I always have” (ID4, 19-year-old male)“Well, I think one of the things is that when I got better, I think she was scared that if something were to happen because of the chemo in my body, what would the effects be on her? Even if you're wearing protection…” (ID3, 19-year-old male)“I'm very conscious with the scars that I've got from surgery … I don't like them being looked at or touched” (ID5, 23-year-old female)“I don't know if it's because without the hair and stuff, that I don't feel attractive anymore, or my body just looks different to me” (ID6, 23-year-old female)“I just don't feel like it … my emotions have been going really up and down … I don't want to do anything like that, which is not like me … I have to really put myself in the right mental state. I have to concentrate” (ID7, 24-year-old female)“Just the fact that I didn't want to and I felt hideous as well. I didn't want to share that part of me going through it” (ID7, 24-year-old female)
Conflict/difficulties in the relationship	“During my treatment and stuff, I wasn't really angry with anyone else but him. And I think all of my anger toward cancer and all of my anger toward everything that was going on was directed at him only. So that conflict with me was always having anger toward him, definitely caused him problems” (ID2, 18-year-old female)“It's hard because when I was diagnosed, I had a lot of attention from a lot of girls and that put strain on the relationship … There's a lot of strains that go on when you get diagnosed, and you sometimes want your space and arguments come out of nothing” (ID3, 19-year-old male)“And I think that not getting the emotional support, you know, like, he would never compliment me, because that's not what he does, I think that played a big part in it too. And that's just really hard because that's just him not because I was in treatment. But it definitely did play a role in it, the fact that that's what I needed” (ID7, 24-year-old female)“I don't think we would have had any communication problems if I wasn't been diagnosed because beforehand I would just say it how it is … I wouldn't be afraid to confront him about certain things but now it's completely different. It has played a big part of it” (ID7, 24-year-old female)“He always brings up that we don't want to do it. Or I don't put effort in when we do, or I don't initiate it” (ID7, 24-year-old female)

Quotes in this table were not replicated verbatim; some of the unique nuances of the participant's speech were removed to ease reading (e.g., “like,” “um,” etc.).

Five AYAs (5/16, 31.3%) reported that the emotional support from their partner both during and after treatment enabled them to cope more positively with their cancer experience (“She was really good throughout it all and was there for me pretty much for all of it” ID3, 19-year-old male, diagnosed at 18 years old). AYAs who described partners as “supportive” and “understanding” and those who felt able to communicate appeared to describe less relationship conflict. Two participants also reported that the cancer experience was beneficial for their relationship, and even “strengthened the relationship” (ID1, 19-year-old female, diagnosed at 16 years old).

Although participants were asked about their relationships within the past 30 days, several AYAs (5/16; 31.3%) spontaneously reported a loss of interest in sexual activities during treatment, often attributed to feeling unwell (“I went through a period where I just didn't … when you're sick, you're not thinking about it or anything like that” ID3, 19-year-old males, diagnosed at 18 years old). Of these, four (4/5; 80.0%) also reported that sexual difficulties experienced on treatment resolved post-treatment.

A loss of sexual interest post-treatment was also reported by seven AYAs (7/8; 87.5%) (“I just don't feel like it … my emotions have been going really up and down … I don't want to do anything like that, which is not like me … I have to really put myself in the right mental state. I have to concentrate” ID7, 24-year-old female). Two of these AYAs (2/7; 28.6%) attributed this to medication or illness-related side effects, while two AYAs (2/7; 28.6%) identified emotional fluctuations as contributing factors. Three AYAs (3/7; 42.9%) acknowledged that body-image changes may also have exacerbated their sexual difficulties. (“I don't know if it's because without the hair and stuff, that I don't feel attractive anymore, or my body just looks different to me” ID6, 23-year-old female).

Six AYAs (6/8; 75.0%) described relationship conflict post-treatment due to a lack of sexual interest and satisfaction (“He always brings up that we don't want to do it. Or I don't put effort in when we do, or I don't initiate it” ID7, 24-year-old female). A lack of communication was also raised as a potential reason for relationship conflict for three AYAs (3/6; 50.0%).

Several AYAs (4/16; 25.0%) also described some confusion regarding sexual difficulties or concerns post-treatment (“I think she was scared that if something were to happen because of the chemo in my body, what would the effects be on her…” ID3, 19-year-old male).

Discussion

This study aimed to determine how AYAs early post-treatment perceive the quality of their interpersonal relationships and sexual functioning/satisfaction in reference to their cancer experience. Cancer can interrupt the normal development of sexual and romantic relationships among AYAs. Difficulties maintaining intimate relationships during cancer treatment may persist into survivorship. Research has raised awareness of the sexual functioning issues experienced. However, little research has examined AYAs' lived experiences regarding sexual functioning and romantic relationships in early survivorship. Although not all young cancer survivors experience relationship difficulties, the present findings suggest they still experience some sexual difficulties post-treatment. This is one of few studies to explore AYA cancer survivors' perspectives on romantic/sexual relationships in the early post-treatment period.

Consistent with previous research,⁵ AYAs in this study did not report relationship dissatisfaction in the past 30 days. However, they still experienced difficulties regarding sexual interest and satisfaction. Past research suggested that up to 75% of young adult cancer survivors were satisfied with their relationship. Yet, more than one-third still reported dissatisfaction with their sexual efficiency and frequency of sex.⁵ A potential reason for sexual issues being raised relatively frequently may be due to poorly understood medical-related issues experienced. The participants in the current study described confusion regarding sexual issues experienced post-treatment, as previously documented.^5,18 Discussing sexual issues with adolescents during and post-treatment appears important to improve knowledge and minimize potential negative sexual difficulties.^5,19 Addressing potential sexual difficulties would allow for preventative measures and provide AYAs with the knowledge and understanding of potential experiences post-treatment. Appropriate support and information may potentially reduce distress due to any difficulties experienced. Current research suggests that many healthcare professionals may not address AYA sexual/romantic relationships.⁵ There is a definite need for information on cancer-related sexuality. The role of patient–physician communication and whether AYAs desire and/or feel comfortable with discussing sexual/romantic relationships also requires further exploration.

AYAs reported that a lack of sexual interest and reduced frequency of sexual activities often lead to relationship conflict. Some AYAs expressed that changes in body image and self-esteem may contribute to the sexual difficulties that they experienced, which then lead to conflict. Given the importance of body image for AYA cancer survivors,^12,13,20 providing AYAs with strategies to navigate their altered body image both on- and off-treatment, such as positive rational coping and less use of avoidance coping, and promoting positive parental influences via verbal messages and active encouragement, may reduce the potential for later sexual issues. However, little research has been done to determine what is effective.²¹

Characterizing AYAs' relationship experiences has important clinical implications for promoting their resilience in survivorship. This is specifically to ensure the development and maintenance of healthy relationships, which appears necessary for overall health-related quality of life and prevention of distress.²² Emotional support from and communication with a partner was important for many AYAs. Supportive partner communication has been shown to improve adjustment to cancer,¹⁹ and may lead to less relationship conflict as described in this study. However, no intervention currently exists that focuses on promoting communication between AYAs and their partners post-treatment. Effective couple-based interventions from adult oncology could be adapted for this population.²³ Specifically, interventions that focus on enhancing communication within the dyad, perspective taking, and promoting physical intimacy may be effective for this population.

This study should be interpreted with acknowledgment of several limitations. First, sexual/romantic relationships were only asked in reference to the past 30 days, which could have potentially resulted in missing data. Similarly, as only AYAs currently in a relationship were interviewed, missing data may also exist from other survivors with valuable experiences. Second, data were not collected to determine differences in relationship experiences on-treatment and post-treatment, unless it was spontaneously mentioned. Data were also not collected to identify differences between relationships formed prior to treatment, on-treatment, or post-treatment. Finally, as participants were instructed that “sex” could refer to any type of physical intimacy, it is also difficult to differentiate between what specific sexual difficulties were experienced and whether they differed on- and post-treatment. Future research should consider addressing sexual/romantic relationships across a larger time frame, including AYAs both in a relationship and single, and differentiating between sexual difficulties experienced. Given the close link between sexual/romantic relationships, fertility, and the desire for children, it is also recommended that future research consider how these factors are associated for this specific population.

Although past research has yielded mixed findings,^20,24 this study contributes to research indicating that while some AYAs early post-treatment are resilient to sexual/relationship difficulties, others do experience difficulties self-attributed to their cancer experience. Better understanding the sexual difficulties experienced early post-treatment and factors that enable relationship maintenance for some AYAs and not others warrants further exploration.

Footnotes

Acknowledgments

The authors wish to thank all of the young people who participated in this study. We acknowledge the contribution of Sanaa Mathur, Helen Wilson, and Emily Spencer, as well as the support of the wider Recapture Life Working Party, including Richard Bryant (University of New South Wales), Phyllis Butow (University of Sydney), Pandora Patterson (CanTeen Australia), Antoinette Anazodo (Sydney Youth Cancer Service), Susan Sawyer (Centre for Adolescent Health, VIC), Kate Thompson and Lucy Holland (OnTrac@PeterMac, VIC), Michael Osborn (Youth Cancer Service SA/NT), Meg Plaster (Youth Cancer Service, WA), Belinda Matigian and Ms Lyndal Gray (AYA Cancer Service, Princess Alexandra Hospital, QLD), and Belinda Barton (Children's Hospital Westmead, NSW). The Recapture Life study was co-funded by a beyond blue and Cancer Australia project grant (ID: 1022868). Ursula Sansom-Daly is supported by an Early Career Fellowship from the Cancer Institute of NSW (ID: 14/ECF/1-11) and an Early Career Fellowship from the National Health and Medical Research Council of Australia (APP1111800). Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development fellowship from the Cancer Institute of NSW (ID: 11/ECF/3-43). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation.

Author Disclosure Statement

No competing financial interests exist.

Appendix 1: PAIS Sexual Relationship Interview Schedule

Interviewer: Are you currently in a relationship?

If no, skip questions.

Interviewer: The next few questions are about your relationship at the moment. It will refer to how you are with your partner intimately but this does not necessarily mean sex, it could be cuddling, kissing, or any form of affection between you and your partner … Is that ok?

References

Fincham

, Cui

(Eds). Romantic relationships in emerging adulthood. New York: Cambridge University Press; 2010.

Rauer

, Pettit

, Lansford

, Bates

, Dodge

. Romantic relationship patterns in young adulthood and their developmental antecedents. Devel Psychol. 2013; 49(11):2159.

World Health Organization. Adolescent health. 2016. Accessed January 6, 2016 from www.who.int/topics/adolescent_health/en/

National Cancer Institute. Adolescents and young adults with cancer. Accessed January 6, 2016 from www.cancer.gov/types/aya

Geue

, Schmidt

, Sender

, Sauter

, Friedrich

. Sexuality and romantic relationships in young adult cancer survivors: satisfaction and supportive care needs. Psychooncology. 2015; 24(11):1368–76.

Thompson

, Long

, Marsland

. Impact of childhood cancer on emerging adult survivors' romantic relationships: a qualitative account. J Sex Med. 2013; 10(Suppl 1):65–73.

Wengenroth

, Rueegg

, Michel

, et al. Life partnerships in childhood cancer survivors, their siblings, and the general population. Pediatr Blood Cancer. 2014; 61:538–45.

Kirchhoff

, Yi

, Wright

, Warner

, Smith

. Marriage and divorce among young adult cancer survivors. J Cancer Surviv. 2012; 6(4):441–50.

Van Dijk

, van Dulmen‐den Broeder

, Kaspers

, et al. Psychosexual functioning of childhood cancer survivors. Psychooncology. 2008; 17(5):506–11.

10.

Zebrack

. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011; 117(S10):2289–94.

11.

Evan

, Kaufman

, Cook

, Zeltzer

. Sexual health and self‐esteem in adolescents and young adults with cancer. Cancer. 2006; 107(S7):1672–9.

12.

Larouche

, Chin-Peuckert

. Changes in body image experienced by adolescents with cancer. J Pediatr Oncol Nurs. 2006; 23(4):200–9.

13.

Carpentier

, Fortenberry

. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health. 2010; 47(2):115–25.

14.

Cancer Australia. National Service Delivery Framework for Adolescents and Young Adults with Cancer; 2008. Accessed January 13, 2016 from https://canceraustralia.gov.au/sites/default/files/publications/national_service_delivery_framework_for_adolescents_and_young_adults_with_cancer_teen_52f301c25de9b.pdf

15.

Sansom-Daly

, Wakefield

, Bryant

, et al. Online group-based cognitive–behavioural therapy for adolescents and young adults after cancer treatment: a multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer. 2012; 12(1): 339.

16.

Derogatis

. The psychosocial adjustment to illness scale (PAIS). J Psychosom Res. 1986; 30(1):77–91.

17.

Miles

, Huberman

. Drawing valid meaning from qualitative data: toward a shared craft. Educ Res. 1984; 20–30.

18.

Murphy

, Klosky

, Reed

, et al. The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer. Cancer. 2015; 121(15):2529–36.

19.

Stinson

, Jibb

, Greenberg

, et al. A qualitative study of the impact of cancer on romantic relationships, sexual relationships, and fertility: perspectives of Canadian adolescents and parents during and after treatment. J Adolesc Young Adult Oncol. 2015; 4(2):84–90.

20.

Lehmann

, Hagedoorn

, Gerhardt

, et al. Body issues, sexual satisfaction, and relationship status satisfaction in long‐term childhood cancer survivors and healthy controls. Psychooncology. 2015 May 8. DOI: 10.1002/pon.3841. [Epub ahead of print].

21.

Bellizzi

, Smith

, Schmidt

, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012; 118(20):5155–62.

22.

Zeltzer

, Lu

, Leisenring

, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008; 17(2):435–46.

23.

Fergus

, Ahmad

, McLeod

, et al. Couplelinks-an online intervention for young women with breast cancer and their male partners: study protocol for a randomized controlled trial. Trials, 2015; 16(1):33.

24.

Thompson

, Marsland

, Marshal

, Tersak

. Romantic relationships of emerging adult survivors of childhood cancer. Psychooncology, 2009; 18(7):767–74.