Parental experiences of adolescent cancer-related distress: A qualitative study.
adolescent cancer
cancer-related distress
parental distress
Journal
European journal of cancer care
ISSN: 1365-2354
Titre abrégé: Eur J Cancer Care (Engl)
Pays: England
ID NLM: 9301979
Informations de publication
Date de publication:
Jul 2021
Jul 2021
Historique:
revised:
21
12
2020
received:
23
04
2020
accepted:
11
01
2021
pubmed:
30
1
2021
medline:
30
9
2021
entrez:
29
1
2021
Statut:
ppublish
Résumé
Adolescents' cancer-related distress is more complex, severe, and long-lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer-related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer-related distress, with little attention to how their parents experience their adolescent's cancer-related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer-related distress during or immediately subsequent to active treatment. A total of 21 semi-structured interviews were conducted face-to-face or via telephone, with parents of adolescents aged 12-18 years from south-west England. Inductive reflexive thematic analysis was used to analyse the data. Three themes were generated: "The contagion of distress", "Navigating breaking point" and "Developmental disruption". Parental distress transcended from adolescent cancer-related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on "normal" adolescence during and just after active treatment. Parental distress reflected the multi-faceted nature of their adolescent's cancer-related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested.
Types de publication
Journal Article
Langues
eng
Pagination
e13417Subventions
Organisme : Department of Health
ID : DRF-2016-09-021
Pays : United Kingdom
Organisme : Research Trainees Coordinating Centre
ID : DRF-2016-09-021
Informations de copyright
© 2021 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.
Références
Bakula, D. M., Sharkey, C. M., Perez, M. N., Espeleta, H. C., Gamwell, K. L., Baudino, M., Delozier, A. M., Chaney, J. M., Alderson, M., & Mullins, L. L. (2019). The relationship between parent and child distress in pediatric cancer: A meta-analysis. Journal of Pediatric Psychology, 44(10), 1121-1136. https://doi.org/10.1093/jpepsy/jsz051
Barry, V., Stout, M. E., Lynch, M. E., Mattis, S., Tran, D. Q., Antun, A., Ribeiro, M. J. A., Stein, S. F., & Kempton, C. L. (2020). The effect of psychological distress on health outcomes: A systematic review and meta-analysis of prospective studies. Journal of Health Psychology, 25(2), 227-239. https://doi.org/10.1177/1359105319842931
Bhaskar, R. (2010). Reclaiming reality: A critical introduction to contemporary philosophy: Routledge.
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. https://doi.org/10.1080/2159676X.2019.1628806
Burgoyne, M. J., Bingen, K., Leuck, J., Dasgupta, M., Ryan, P., & Hoffmann, R. G. (2015). Cancer-related distress in young adults compared to middle-aged and senior adults. Journal of Adolescent and Young Adult Oncology, 4(2), 56-63. https://doi.org/10.1089/jayao.2014.0005
Campbell, N. C., Murray, E., Darbyshire, J., Emery, J., Farmer, A., Griffiths, F., Guthrie, B., Lester, H., Wilson, P., & Kinmonth, A. L. (2007). Designing and evaluating complex interventions to improve health care. BMJ, 334(7591), 455-459. https://doi.org/10.1136/bmj.39108.379965.BE
Carlsson, T., Kukkola, L., Ljungman, L., Hovén, E., & von Essen, L. (2019). Psychological distress in parents of children treated for cancer: An explorative study. PLoS One, 14(6), e0218860. https://doi.org/10.1371/journal.pone.0218860
Colletti, C. J., Wolfe-Christensen, C., Carpentier, M. Y., Page, M. C., McNall-Knapp, R. Y., Meyer, W. H., & Mullins, L. L. (2008). The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer. Pediatric Blood & Cancer, 51(2), 269-274.
Collins, A., Hennessy-Anderson, N., Hosking, S., Hynson, J., Remedios, C., & Thomas, K. (2016). Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliative Medicine, 30(10), 950-959. https://doi.org/10.1177/0269216316634245
Coyne, I., Amory, A., Gibson, F., & Kiernan, G. (2016). Information-sharing between healthcare professionals, parents and children with cancer: More than a matter of information exchange. European Journal of Cancer Care, 25(1), 141-156. https://doi.org/10.1111/ecc.12411
Docherty, A. L., Kayle, M., Maslow, G. R., & Santacroce, S. J. (2015). The adolescent and young adult with cancer: A developmental life course perspective. Seminars in Oncology Nursing, 31(3), 186-196. https://doi.org/10.1016/j.soncn.2015.05.006
Fletcher, A. J. (2017). Applying critical realism in qualitative research: Methodology meets method. International Journal of Social Research Methodology, 20(2), 181-194. https://doi.org/10.1080/13645579.2016.1144401
Gutiérrez-Colina, A. M., Lee, J. L., VanDellen, M., Mertens, A., & Marchak, J. G. (2017). Family functioning and depressive symptoms in adolescent and young adult cancer survivors and their families: A dyadic analytic approach. Journal of Pediatric Psychology, 42(1), 19-27. https://doi.org/10.1093/jpepsy/jsw041
Haverman, L., van Oers, H. A., Limperg, P. F., Houtzager, B. A., Huisman, J., Darlington, A. S., Maurice-Stam, H., & Grootenhuis, M. A. (2013). Development and validation of the distress thermometer for parents of a chronically ill child. The Journal of Pediatrics, 163(4), 1140-1146. https://doi.org/10.1016/j.jpeds.2013.06.011
Hølge-Hazelton, B., Timm, H. U., Graugaard, C., Boisen, K. A., & Sperling, C. D. (2016). “Perhaps I will die young”. Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed method study. Supportive Care in Cancer, 24(11), 4727-4737. https://doi.org/10.1007/s00520-016-3322-z
Joffe, H. (2012). Thematic analysis. In D. Harper, & A. R. Thompson (Eds.), Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners, 1st ed. (pp. 209-223): Wiley.
Kazak, A. E., Alderfer, M. A., Streisand, R., Simms, S., Rourke, M. T., Barakat, L. P., Gallagher, L. P., & Cnaan, A. (2004). Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: A randomized clinical trial. Journal of Family Psychology, 18(3), 493-504. https://doi.org/10.1037/0893-3200.18.3.493
Kosir, U., Wiedemann, M., Wild, J., & Bowes, L. (2019). Psychiatric disorders in adolescent cancer survivors: A systematic review of prevalence and predictors. Cancer Reports, 2(3), 1-15. https://doi.org/10.1002/cnr2.1168
Mack, J. W., Fasciano, K. M., & Block, S. D. (2019). Adolescent and young adult cancer patients' experiences with treatment decision-making. Pediatrics, 143(5), e20182800. https://doi.org/10.1542/peds.2018-2800
McNeil, R., Egsdal, M., Drew, S., McCarthy, M. C., & Sawyer, S. M. (2019). The changing nature of social support for adolescents and young adults with cancer. European Journal of Oncology Nursing, 43, e101667. https://doi.org/10.1016/j.ejon.2019.09.008
Monterosso, L., & Kristjanson, L. J. (2008). Supportive and palliative care needs of families of children who die from cancer: An Australian study. Palliative Medicine, 22(1), 59-69. https://doi.org/10.1177/0269216307084608
Monti, J. D., Winning, A. M., Watson, K. H., Williams, E. M., Gerhardt, C. A., Compas, B. E., & Vannatta, K. A. (2017). Maternal and paternal influences on children's coping with cancer-related stress. Journal of Child and Family Studies, 26, 2016-2025. https://doi.org/10.1007/s10826-017-0711-y
National Institute for Health and Care Excellence. (2005). Guidance on cancer services: Improving outcomes in children and young people with cancer [PDF]. Retrieved from https://www.nice.org.uk/guidance/csg7/resources/improving-outcomes-in-children-and-young-people-with-cancer-update-pdf-773378893
Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 1-13. https://doi.org/10.1177/1609406917733847
Okado, Y., Long, A. M., & Phipps, S. (2014). Association between parent and child distress and the moderating effects of life events in families with and without a history of pediatric cancer. Journal of Pediatric Psychology, 39(9), 1049-1060. https://doi.org/10.1093/jpepsy/jsu058
Pennant, S., C. Lee, S., Holm, S., Triplett, K. N., Howe-Martin, L., Campbell, R., & Germann, J. (2020). The role of social support in adolescent/young adults coping with cancer treatment. Children, 7(1), 2. https://doi.org/10.3390/children7010002
Pöder, U., Ljungman, G., & von Essen, L. (2010). Parents' perceptions of their children's cancer-related symptoms during treatment: A prospective, longitudinal study. Journal of Pain and Symptom Management, 40(5), 661-670. https://doi.org/10.1016/j.jpainsymman.2010.02.012
Reed-Berendt, R., Shafran, R., Langdon, D., Christie, D., Hough, R., & Coughtrey, A. (2019). Experiences of low mood in young people with cancer: A qualitative study. Journal of Pediatric Oncology Nursing, 36(6), 424-435. https://doi.org/10.1177/1043454219844232
Romeo, R. D. (2013). The teenage brain: The stress response and the adolescent brain. Current Directions in Psychological Science, 22(2), 140-145. https://doi.org/10.1177/0963721413475445
Sansom-Daly, U. M., & Wakefield, C. E. (2013). Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Translational Pediatrics, 2(4), 167-197. https://doi.org/10.3978/j.issn.2224-4336.2013.10.06
Schubart, J. R., Kinzie, M. B., & Farace, E. (2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10(1), 61-72. https://doi.org/10.1215/15228517-2007-040
Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19(10), 1013-1025.
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349-357. https://doi.org/10.1093/intqhc/mzm042
Walker, A. J., Lewis, F. M., & Rosenberg, A. R. (2020). Walking on eggshells: Parents' first year after their adolescent completes their cancer treatment. Journal of Pediatric Oncology Nursing, 37(4), 233-243. https://doi.org/10.1177/1043454220909788
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15(2), 215-228. https://doi.org/10.1080/08870440008400302
Yardley, L. (2008). Demonstrating validity in qualitative psychology. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 235-251). SAGE Ltd..
Zebrack, B. J. (2011). Psychological, social, and behavioral issues for young adults with cancer. Cancer, 117(S10), 2289-2294. https://doi.org/10.1002/cncr.26056