“This Is the First Time I've Talked About This”: Considerations When Conducting Qualitative Research Interviews with Adolescents and Young Adults with Cancer
Restricted accessResearch articleFirst published online October, 2021
“This Is the First Time I've Talked About This”: Considerations When Conducting Qualitative Research Interviews with Adolescents and Young Adults with Cancer
Qualitative research is a useful and important way to describe and analyze the experiences of adolescents and young adults (AYAs) with cancer. However, undertaking qualitative research with AYAs living with, or beyond, a cancer diagnosis requires careful planning and a well-informed approach for participants with a high level of vulnerability and who are at a crucial stage developmentally. This article reflects on the challenges of including AYAs with cancer between the ages of 16 and 25 years in qualitative research. By drawing on each author's own experiences of engaging in qualitative research interviews with AYAs with cancer, the article provides suggestions regarding how best to manage challenges and yield valuable data describing their experiences. Insights that are shared between qualitative researchers in this field may assist in preparing for the challenges posed by conducting qualitative research with this group and may help researchers to manage this activity successfully.
Get full access to this article
View all access options for this article.
References
1.
WongAWK, ChangTT, ChristopherK, et al.Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words. J Cancer Surviv. 2017; 11(6):751–64.
2.
GibsonF, PearceS, EdenT, et al.Young people describe their pre-diagnosis cancer experience. Psychooncology. 2013; 22(11):2585–92.
3.
HindsPS, DrewD, OakesLL, et al.End of life care preferences of pediatric patients with cancer. J Clin Oncol. 2005; 23(36):9146–54.
4.
HokkanenH, ErikssonE, AhonenO, SalanteraS. Adolescents with cancer: experience of life and how it could be made easier. Cancer Nurs. 2004; 27(4):325–35.
5.
MorganS, DaviesS, PalmerS, PlasterM. Sex, drugs, and rock ‘n'roll: caring for adolescents and young adults with cancer. J Clin Oncol. 2010; 28(32):4825–30.
6.
OlssonM, JarfeltM, PergertP, EnskärK. Experiences of teenagers and young adults treated for cancer in Sweden. Eur J Oncol Nurs.2015;19(5):575–81.
7.
HeathcoteLC, LoecherN, SpuntS. Do qualitative research interviews cause distress in adolescents and young adults asked to discuss fears of cancer recurrence?Psychooncology. 2020. [Epub ahead of print]; DOI: 10.1002/pon.5544.
8.
LeffertN, PetersonAC. Adolescent development: implications for the adolescent alone. In: Blustein J, Levine C, Neveloff Dubler N (Eds). The adolescent alone, decision making in health care in the United States. Cambridge: Cambridge University Press; 1999; pp. 31–49.
9.
ResslerIB, CachJ, McNeillD, et al.Continued parental attendance at a clinic for adult survivors of childhood cancer. J Pediatr Haematol Oncol. 2003; 25(11):868–73.
10.
GrinyerA.Young adults with cancer: parents' interactions with health care professionals. Eur J Cancer Care. 2004; 13(1):88–95.
11.
DownsJS, FischhoffB. Theories and models of adolescent decision making. In: DiClemente RJ, Santelli JS, Crosby RA (Eds.). Adolescent health: understanding and preventing risk behaviors. San Francisco: Jossey-Bass; 2009; pp. 77–90.
TarrantM, MacKenzieL, HewittLA. Friendship group identification, multidimensional self-concept, and experience of developmental tasks in adolescence. J Adolesc. 2006; 29(4):627–40.
14.
ErskineHE, MoffittTE, CopelandWE, et al.A heavy burden on young minds: the global burden of mental and substance use disorders in children and youth. Psychol Med. 2015; 45(7):1551–63.
15.
TonorezosES, OeffingerKC. Research challenges in adolescent and young adult cancer survivor research. Cancer. 2011; 117(10Suppl):2295–300.
16.
Sansom-DalyUM, WakefieldCE. Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Transl Pediatr, 2013; 2:167–97.
17.
VinerRM, RossD, HardyR, et al.Life course epidemiology: recognising the importance of adolescence. J Epidemiol Community Health. 2015; 69(8):719–20.
18.
Sansom-DalyUM, WakefieldCE, McGillBC, PattersonP. Ethical and clinical challenges in delivering group-based cognitive-behavioural therapy to adolescents and young adults with cancer using videoconferencing technology. Aust Psychologist. 2015; 50(4):271–8.
19.
StahlkeS.Expanding on notions of ethical risks to qualitative researchers. Int J Qual Methods. 2018; 17:1–9.
20.
DaviesJ, KellyD, HanniganB. ‘Life then’, ‘life interrupted’, ‘life reclaimed’: the fluctuation of agency in teenagers and young adults with cancer. Eur J Oncol Nurs. 2018; 36:48–55.
21.
DaviesJ.The experience and role of partners in helping to meet the support needs of adolescents and young adults with cancer. J Adv Nurs. 2019; 75(5):1119–25.
22.
KellyD, PearceS, MullhallA. ‘Being in the same boat’: ethnographic insights into an adolescent cancer unit. Int J Nurs Stud. 2004; 41(8):847–57.
23.
PearceS, GibsonF, WhelanJ, KellyD. Untellable tales and uncertain futures: the unfolding narratives of young adults with cancer. Int J Soc Res Methodol. 2020; 23(4):377–90.
24.
Sansom-DalyUM, WakefieldCE, RobertsonEG, et al.‘Adolescent and young adult cancer survivors’ memory and future thinking processes place them at risk for poor mental health’. Psychooncology. 2018; 27(12):2709–16.
25.
Sansom-DalyUM, BaenzigerJ, McGillB, WakefieldCE. ‘Impact of physical appearance changes reported by adolescent and young adult cancer survivors: a qualitative analysis’. Eur J Cancer Care. 2019; 28(4):e13052.
26.
VetschJ, WakefieldCE, McGillBC, et al.‘Educational and vocational goal disruption in adolescent and young adult cancer survivors’. Psychooncology. 2018; 27(2):532–38.
27.
WakefieldCE, McLooneJ, FlemingC, et al.Adolescent cancer and health-related decision-making: an Australian multi-perspective family analysis of appointment attendance and involvement in medical and lifestyle choices. J Adolesc Young Adult Oncol. 2012; 1:173–80.
28.
BellizziKM, SmithA, SchmidtS, et al.Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012; 118(20):5155–62.
29.
SternM, KrivoyE, FosterRH, et al.Psychosocial functioning and career decision-making in Israeli adolescent and young adult cancer survivors. Pediatr Blood Cancer. 2010; 55(4):708–13.
30.
ZebrackB, IsaacsonS. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012; 30(11):1221–6.
31.
ArnettJJ. Emerging adulthood, 2nd ed. Oxford: Oxford University Press; 2015.
32.
FernLA, TaylorRM, WhelanJ, et al.The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults. Cancer Nurs. 2013; 36(5):E27–38.
33.
GillP, StewartK, TreasureE, ChadwickB. Methods of data collection in qualitative research: interviews and focus groups. Br Dent J. 2008; 204(6):291–5.
34.
KvaleS. Learning the craft of qualitative research interviewing, 3rd ed. London: Sage Publications; 2015.
35.
BungayV, HalpinM, AtchisonC, JohnstonC. Structure and agency: reflections from an exploratory study of Vancouver indoor sex workers, Culture. Health Sex. 2011; 13(1):15–29.
36.
Zimmer-GembeckMJ, SkinnerEA. Review: the development of coping across childhood and adolescence: an integrative review and critique of research. Int J Behav Dev. 2011; 35(1):1–17.
37.
ChiuriMC, Del BocaD. Home-leaving decisions of daughters and sons. RevEcon Househ. 2010; 8(3):393–408.
38.
JonesG. Leaving home. Buckingham: Open University Press; 1995.
39.
Seiffe-KrenkeI.Leaving home or still in the nest? Parent-child relationships and psychological health as predictors of different leaving home patterns. Dev Psychol. 2006; 42(5):864–76.
40.
LashlieC. He'll be OK: helping adolescent boys become good men. New Zealand: Harper Collins; 2011.
41.
StewartJL, Pyke-GrimmKA, KellyKP. Parental treatment decision making in pediatric oncology. Semin Oncol Nurs. 2005; 21(2):89–97.
42.
StewartJL, Pyke-GrimmKA. Making the right decision for my child with cancer. Cancer Nurs. 2012; 35(6):419–28.
43.
WakefieldCE, McLooneJK, ButowP, et al.Parental adjustment to the completion of their child's cancer treatment. Pediatr Blood Cancer. 2011; 56(4):524–31.
44.
WakefieldCE, ButowP, FlemingCA, et al.Family information needs at childhood cancer treatment completion. Pediatr Blood Cancer. 2012; 58(4):621–6.
45.
YoungL, GibbE. Trauma and grievance. In: Garland C (Eds). Understanding trauma: a psychoanalytic Approach. (Tavistock Clinic Series). London: Routledge; 1998; pp. 81–95.
46.
BriggsS.Working with adolescents and young adults. a contemporary psychodynamic approach, 2nd ed. Basingstoke: Palgrave Macmillan;. 2008.
47.
KnoxS, BurkardA. Qualitative research interviews. Psychother Res. 2009; 19:566–75.
48.
MerikangasKR, HeJP, BursteinM, et al.Lifetime prevalence of mental disorders in US adolescents: results from the National Comorbidity Survey Replication–Adolescent Supplement (NCS-A). J Am Acad Child Adolesc Psychiatry. 2010; 49(10):980–9.
49.
HaaseJE.The adolescent resilience model as a guide to interventions. J Pediatr Oncol Nurs. 2004; 21(5):289–99.
50.
MealerM, JonesJ. Methodological and ethical issues related to qualitative telephone interviews on sensitive topics. Nurse Researcher. 2014; 21(4):32–7.
51.
Sansom-DalyUM, WakefieldCE, McGillBC, et al.Consensus among international ethical guidelines for the provision of videoconferencing-based mental health treatments. JMIR Ment Health. 2016; 3(2):e17.
52.
ChalmersJA, Sansom-DalyUM, PattersonP, et al.Psychosocial assessment using telehealth in adolescent and young adults with cancer: a partially-randomised patient preference pilot study. JMIR Res Protoc. 2018; 7(8):e168.
53.
MacNameeS. Research as relational practice: exploring modes of inquiry. In: Simon G, Chard A (Eds). Systemic inquiry: innovations in reflexive practice research. London: Everything is Connected Press; 2014; pp. 74–94.
