Needs, Barriers and Facilitators of Adolescents Participating in a Lifestyle Promotion Program in Oncology: Stakeholders, Adolescents and Parents’ Perspective
Abstract
:1. Introduction
2. Methods
2.1. Study Framework and Ethics
2.2. Participants
2.2.1. Stakeholders
2.2.2. Adolescents
2.2.3. Parents
2.3. Recruitment and Data Collection
2.3.1. Focus Groups with Stakeholders
2.3.2. Self-Report Questionnaires to VIE Study Stakeholders
2.3.3. Interviews with Adolescents and Parents
2.4. Data Analysis
3. Results
3.1. Characteristics of Participants
3.1.1. Focus Groups
3.1.2. Self-Report Questionnaires
3.1.3. Interviews with Adolescents and Parents
3.2. Main Themes Related to Adolescents in Oncology
3.3. Specific Needs of Adolescents Treated for Cancer
3.4. Barriers and Facilitators to Participation in Lifestyle Promotion Interventions
3.5. Impact of Cancer on Adolescents
3.6. Suggestions to Adapt Oncology Lifestyle Promotion Interventions for Adolescents
4. Discussion
5. Study Strengths and Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Miller, K.D.; Fidler-Benaoudia, M.; Keegan, T.H.; Hipp, H.S.; Jemal, A.; Siegel, R.L. Cancer statistics for adolescents and young adults, 2020. CA Cancer J. Clin. 2020, 17, 17. [Google Scholar] [CrossRef] [PubMed]
- American Cancer Society. Key Statistics for Childhood Cancers. 2022. Available online: https://www.cancer.org/cancer/cancer-in-children/key-statistics.html (accessed on 2 March 2022).
- Siegel, R.L.; Miller, K.D.; Fuchs, H.E.; Jemal, A. Cancer statistics, 2022. CA Cancer J. Clin. 2022, 72, 7–33. [Google Scholar] [CrossRef] [PubMed]
- Public Health Agency of Canada. Cancer in Children in Canada (0–14 years). Available online: https://www.canada.ca/en/public-health/services/chronic-diseases/cancer/cancer-children-canada-0-14-years.html (accessed on 22 July 2022).
- Tricoli, J.; Bleyer, A. Adolescent and Young Adult Cancer Biology. Cancer J. 2018, 24, 267–274. [Google Scholar] [CrossRef] [PubMed]
- National Cancer Institute. Expected Survival Life Tables by Socio-Economic Standards. Leukemia SEER Relative Survival Rates by Time Since Diagnosis, 2000–2018. Available online: https://seer.cancer.gov/statistics-network/explorer/application.html?site=90&data_type=4&graph_type=6&compareBy=sex&chk_sex_1=1&race=1&age_range=16&hdn_stage=101&advopt_precision=1&advopt_show_ci=on&advopt_display=2 (accessed on 9 June 2022).
- Bleyer, A.; Barr, R.; Hayes-Lattin, B.; Thomas, D.; Ellis, C.; Anderson, B.; on behalf of the Biology and Clinical Trials Subgroups of the US National Cancer Institute Progress Review Group in Adolescent and Young Adult Oncology. The distinctive biology of cancer in adolescents and young adults. Nat. Rev. Cancer 2008, 8, 288–298. [Google Scholar] [CrossRef] [PubMed]
- Murphy, B.L.; Day, C.N.; Hoskin, T.L.; Habermann, E.B.; Boughey, J.C. Adolescents and Young Adults with Breast Cancer have More Aggressive Disease and Treatment Than Patients in Their Forties. Ann. Surg. Oncol. 2019, 26, 3920–3930. [Google Scholar] [CrossRef]
- Gnerlich, J.L.; Deshpande, A.D.; Jeffe, D.B.; Sweet, A.; White, N.; Margenthaler, J.A. Elevated breast cancer mortality in women younger than age 40 years compared with older women is attributed to poorer survival in early-stage disease. J. Am. Coll. Surg. 2009, 208, 341–347. [Google Scholar] [CrossRef]
- Weinberg, B.A.; Marshall, J.L.; Salem, M.E. The Growing Challenge of Young Adults with Colorectal Cancer. Oncology 2017, 31, 381–389. [Google Scholar]
- Rytting, M.E.; Jabbour, E.J.; O’Brien, S.M.; Kantarjian, H.M. Acute lymphoblastic leukemia in adolescents and young adults. Cancer 2017, 123, 2398–2403. [Google Scholar] [CrossRef]
- McNeer, J.L.; Raetz, E.A. Acute lymphoblastic leukemia in young adults: Which treatment? Curr. Opin. Oncol. 2012, 24, 487–494. [Google Scholar] [CrossRef]
- Bleyer, A.; Spreafico, F.; Barr, R. Prostate cancer in young men: An emerging young adult and older adolescent challenge. Cancer 2020, 126, 46–57. [Google Scholar] [CrossRef]
- Milliron, B.J.; Packel, L.; Dychtwald, D.; Klobodu, C.; Pontiggia, L.; Ogbogu, O.; Barksdale, B.; Deutsch, J. When Eating Becomes Torturous: Understanding Nutrition-Related Cancer Treatment Side Effects among Individuals with Cancer and Their Caregivers. Nutrients 2022, 14, 356. [Google Scholar] [CrossRef] [PubMed]
- Klanjsek, P.; Pajnkihar, M. Causes of inadequate intake of nutrients during the treatment of children with chemotherapy. Eur. J. Oncol. Nurs. 2016, 23, 24–33. [Google Scholar] [CrossRef] [PubMed]
- Murphy, A.J.; White, M.; Elliott, S.A.; Lockwood, L.; Hallahan, A.; Davies, P.S.W. Body composition of children with cancer during treatment and in survivorship. Am. J. Clin. Nutr. 2015, 102, 891–896. [Google Scholar] [CrossRef] [PubMed]
- Esbenshade, A.J.; Simmons, J.H.; Koyama, T.; Lindell, R.B.; Friedman, D.L. Obesity and insulin resistance in pediatric acute lymphoblastic leukemia worsens during maintenance therapy. Pediatr. Blood Cancer 2013, 60, 1287–1291. [Google Scholar] [CrossRef]
- Bandapalli, O.R.; Warris, L.T.; van den Akker, E.L.T.; Bierings, M.B.; van den Bos, C.; Zwaan, C.M.; Sassen, S.D.T.; Tissing, W.J.E.; Veening, M.A.; Pieters, R.; et al. Acute Activation of Metabolic Syndrome Components in Pediatric Acute Lymphoblastic Leukemia Patients Treated with Dexamethasone. PLoS ONE 2016, 11, e0158225. [Google Scholar] [CrossRef]
- Kourti, M.; Tragiannidis, A.; Makedou, A.; Papageorgiou, T.; Rousso, I.; Athanassiadou, F. Metabolic syndrome in children and adolescents with acute lymphoblastic leukemia after the completion of chemotherapy. J. Pediatr. Hematol. Oncol. 2005, 27, 499–501. [Google Scholar] [CrossRef]
- Levy, E.; Samoilenko, M.; Morel, S.; England, J.; Amre, D.; Bertout, L.; Drouin, S.; Laverdiere, C.; Krajinovic, M.; Sinnett, D.; et al. Cardiometabolic Risk Factors in Childhood, Adolescent and Young Adult Survivors of Acute Lymphoblastic Leukemia—A Petale Cohort. Sci. Rep. 2017, 7, 17684. [Google Scholar] [CrossRef]
- Morel, S.; Leahy, J.; Fournier, M.; Lamarche, B.; Garofalo, C.; Grimard, G.; Poulain, F.; Delvin, E.; Laverdiere, C.; Krajinovic, M.; et al. Lipid and lipoprotein abnormalities in acute lymphoblastic leukemia survivors. J. Lipid Res. 2017, 58, 982–993. [Google Scholar] [CrossRef]
- Bélanger, V.; Napartuk, M.; Bouchard, I.; Meloche, C.; Curnier, D.; Sultan, S.; Laverdière, C.; Sinnett, D.; Marcil, V. Cardiometabolic Health After Pediatric Cancer Treatment: Adolescents Are More Affected than Children. Nutr. Cancer 2022, 74, 3236–3252. [Google Scholar] [CrossRef]
- Suh, E.; Stratton, K.L.; Leisenring, W.M.; Nathan, P.C.; Ford, J.S.; Freyer, D.R.; McNeer, J.L.; Stock, W.; Stovall, M.; Krull, K.R.; et al. Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: A retrospective cohort analysis from the Childhood Cancer Survivor Study. Lancet Oncol. 2020, 21, 421–435. [Google Scholar] [CrossRef]
- Robison, L.L.; Hudson, M.M. Survivors of childhood and adolescent cancer: Life-long risks and responsibilities. Nat. Rev. Cancer 2014, 14, 61–70. [Google Scholar] [CrossRef] [PubMed]
- Armenian, S.H.; Xu, L.; Cannavale, K.L.; Wong, F.L.; Bhatia, S.; Chao, C. Cause-specific mortality in survivors of adolescent and young adult cancer. Cancer 2020, 126, 2305–2316. [Google Scholar] [CrossRef] [PubMed]
- Wang, L.; Wang, F.; Chen, L.; Geng, Y.; Yu, S.; Chen, Z. Long-term cardiovascular disease mortality among 160 834 5-year survivors of adolescent and young adult cancer: An American population-based cohort study. Eur. Heart J. 2021, 42, 101–109. [Google Scholar] [CrossRef]
- Qin, N.; Li, Z.; Song, N.; Wilson, C.L.; Easton, J.; Mulder, H.; Plyler, E.; Neale, G.; Walker, E.; Zhou, X.; et al. Epigenetic Age Acceleration and Chronic Health Conditions Among Adult Survivors of Childhood Cancer. J. Natl. Cancer Inst. 2021, 113, 597–605. [Google Scholar] [CrossRef] [PubMed]
- de Fine Licht, S.; Maraldo, M.V.; Specht, L.; Nielsen, T.T.; Winther, J.F.; Rugbjerg, K. Risk factors for cardiovascular disease in 5-year survivors of adolescent and young adult cancer: A Danish population-based cohort study. Cancer 2020, 126, 659–669. [Google Scholar] [CrossRef]
- Kero, A.E.; Madanat-Harjuoja, L.M.; Järvelä, L.S.; Malila, N.; Matomäki, J.; Lähteenmäki, P.M. Health conditions associated with metabolic syndrome after cancer at a young age: A nationwide register-based study. Cancer Epidemiol. 2016, 41, 42–49. [Google Scholar] [CrossRef]
- Lipshultz, S.E.; Landy, D.C.; Lopez-Mitnik, G.; Lipsitz, S.R.; Hinkle, A.S.; Constine, L.S.; French, C.A.; Rovitelli, A.M.; Proukou, C.; Adams, M.J.; et al. Cardiovascular status of childhood cancer survivors exposed and unexposed to cardiotoxic therapy. J. Clin. Oncol. 2012, 30, 1050–1057. [Google Scholar] [CrossRef]
- Zhang, F.F.; Roberts, S.B.; Must, A.; Wong, W.W.; Gilhooly, C.H.; Kelly, M.J.; Parsons, S.K.; Saltzman, E. Assessing Dietary Intake in Childhood Cancer Survivors: Food Frequency Questionnaire Versus 24-Hour Diet Recalls. J. Pediatr. Gastroenterol. Nutr. 2015, 61, 499–502. [Google Scholar] [CrossRef]
- Marchak, J.G.; Kegler, M.C.; Meacham, L.R.; Mertens, A.C.; Effinger, K.E. Cancer-Related Barriers to Health Behaviors Among Adolescent and Young Adult Survivors of Pediatric Cancer and Their Families. J. Adolesc. Young Adult Oncol. 2022. [Google Scholar] [CrossRef]
- Badr, H.; Chandra, J.; Paxton, R.J.; Ater, J.L.; Urbauer, D.; Cruz, C.S.; Demark-Wahnefried, W. Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer. J. Cancer Surviv. 2013, 7, 523–534. [Google Scholar] [CrossRef]
- Murphy-Alford, A.J.; White, M.; Lockwood, L.; Hallahan, A.; Davies, P.S.W. Body composition, dietary intake and physical activity of young survivors of childhood cancer. Clin. Nutr. 2019, 38, 842–847. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ladas, E.J.; Orjuela, M.; Stevenson, K.; Cole, P.D.; Lin, M.; Athale, U.H.; Clavell, L.A.; Leclerc, J.M.; Laverdiere, C.; Michon, B.; et al. Fluctuations in dietary intake during treatment for childhood leukemia: A report from the DALLT cohort. Clin. Nutr. 2019, 38, 2866–2874. [Google Scholar] [CrossRef] [PubMed]
- Beaulieu-Gagnon, S.; Bélanger, V.; Marcil, V. Food habits during treatment of childhood cancer: A critical review. Nutr. Res. Rev. 2019, 32, 265–281. [Google Scholar] [CrossRef] [PubMed]
- Green, R.; Horn, H.; Erickson, J.M. Eating experiences of children and adolescents with chemotherapy-related nausea and mucositis. J. Pediatr. Oncol. Nurs. 2010, 27, 209–216. [Google Scholar] [CrossRef] [PubMed]
- Goddard, E.; Cohen, J.; Bramley, L.; Wakefield, C.E.; Beck, E.J. Dietary intake and diet quality in children receiving treatment for cancer. Nutr. Rev. 2019, 77, 267–277. [Google Scholar] [CrossRef] [PubMed]
- Teixeira, J.F.C.; Maia-Lemos, P.D.S.; Pisani, L.P. Nutritional Characteristics of the Diets of Child and Adolescent Cancer Survivors. J. Adolesc. Young Adult Oncol. 2018, 7, 230–237. [Google Scholar] [CrossRef]
- Gotte, M.; Kesting, S.; Winter, C.; Rosenbaum, D.; Boos, J. Comparison of self-reported physical activity in children and adolescents before and during cancer treatment. Pediatr. Blood Cancer 2014, 61, 1023–1028. [Google Scholar] [CrossRef]
- Caru, M.; Samoilenko, M.; Drouin, S.; Lemay, V.; Kern, L.; Romo, L.; Bertout, L.; Lefebvre, G.; Andelfinger, G.; Krajinovic, M.; et al. Childhood Acute Lymphoblastic Leukemia Survivors Have a Substantially Lower Cardiorespiratory Fitness Level Than Healthy Canadians Despite a Clinically Equivalent Level of Physical Activity. J. Adolesc. Young Adult Oncol. 2019, 8, 674–683. [Google Scholar] [CrossRef]
- Schulte, F.S.M.; Chalifour, K.; Eaton, G.; Garland, S.N. Quality of life among survivors of adolescent and young adult cancer in Canada: A Young Adults with Cancer in Their Prime (YACPRIME) study. Cancer 2021, 127, 1325–1333. [Google Scholar] [CrossRef]
- Anestin, A.S.; Lippe, S.; Robaey, P.; Bertout, L.; Drouin, S.; Krajinovic, M.; Michon, B.; Rondeau, E.; Samoilenko, M.; Laverdiere, C.; et al. Psychological risk in long-term survivors of childhood acute lymphoblastic leukemia and its association with functional health status: A PETALE cohort study. Pediatr. Blood Cancer 2018, 65, e27356. [Google Scholar] [CrossRef]
- Stegenga, K.; Ward-Smith, P. On receiving the diagnosis of cancer: The adolescent perspective. J. Pediatr. Oncol. Nurs. 2009, 26, 75–80. [Google Scholar] [CrossRef] [PubMed]
- Greenblatt, A.; Saini, M. Experiences of adolescents with cancer from diagnosis to post-treatment: A scoping review. Soc. Work Health Care 2019, 58, 776–795. [Google Scholar] [CrossRef] [PubMed]
- Brinkman, T.M.; Zhu, L.; Zeltzer, L.K.; Recklitis, C.J.; Kimberg, C.; Zhang, N.; Muriel, A.C.; Stovall, M.; Srivastava, D.K.; Robison, L.L.; et al. Longitudinal patterns of psychological distress in adult survivors of childhood cancer. Br. J. Cancer 2013, 109, 1373–1381. [Google Scholar] [CrossRef] [PubMed]
- Wu, Y.P.; Yi, J.; McClellan, J.; Kim, J.; Tian, T.; Grahmann, B.; Kirchhoff, A.C.; Holton, A.; Wright, J. Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions. J. Adolesc. Young Adult Oncol. 2015, 4, 184–191. [Google Scholar] [CrossRef]
- Alderman, E.M.; Breuner, C.C. Unique Needs of the Adolescent. Pediatrics 2019, 144, e20193150. [Google Scholar] [CrossRef]
- World Health Organization. Global Consultation on Adolescent-Friendly Health Services. A Consensus Statement; World Health Organization (WHO): Geneva, Switzerland, 2002. [Google Scholar]
- World Health Organization. Making Health Services Adolescent Friendly; World Health Organization: Geneva, Switzerland, 2012. [Google Scholar]
- Hargreaves, D.S.; Elliott, M.N.; Viner, R.M.; Richmond, T.K.; Schuster, M.A. Unmet Health Care Need in US Adolescents and Adult Health Outcomes. Pediatrics 2015, 136, 513–520. [Google Scholar] [CrossRef]
- Park, B.K.; Kim, J.Y.; Rogers, V.E. Development and Usability Evaluation of a Facebook-Based Intervention Program for Childhood Cancer Patients: Mixed Methods Study. J. Med. Internet Res. 2020, 22, e18779. [Google Scholar] [CrossRef]
- Beaulieu-Gagnon, S.; Belanger, V.; Meloche, C.; Curnier, D.; Sultan, S.; Laverdiere, C.; Sinnett, D.; Marcil, V. Nutrition education and cooking workshops for families of children with cancer: A feasibility study. BMC Nutr. 2019, 5, 52. [Google Scholar] [CrossRef]
- Belanger, V.; Delorme, J.; Napartuk, M.; Bouchard, I.; Meloche, C.; Curnier, D.; Sultan, S.; Laverdiere, C.; Sinnett, D.; Marcil, V. Early Nutritional Intervention to Promote Healthy Eating Habits in Pediatric Oncology: A Feasibility Study. Nutrients 2022, 14, 1024. [Google Scholar] [CrossRef]
- Walters, M.; Mowbray, C.; Jubelirer, T.; Jacobs, S.; Kelly, K.M.; Smith, K.; Yao, Y.; Jin, Z.; Ladas, E.J. A bilingual dietary intervention early in treatment is feasible and prevents weight gain in childhood acute lymphoblastic leukemia. Pediatr. Blood Cancer 2021, 68, e28910. [Google Scholar] [CrossRef]
- Orgel, E.; Framson, C.; Buxton, R.; Kim, J.; Li, G.; Tucci, J.; Freyer, D.R.; Sun, W.; Oberley, M.J.; Dieli-Conwright, C.; et al. Caloric and nutrient restriction to augment chemotherapy efficacy for acute lymphoblastic leukemia: The IDEAL trial. Blood Adv. 2021, 5, 1853–1861. [Google Scholar] [CrossRef] [PubMed]
- Caru, M.; Duhamel, G.; Marcil, V.; Sultan, S.; Meloche, C.; Bouchard, I.; Drouin, S.; Bertout, L.; Laverdiere, C.; Sinnett, D.; et al. The VIE study: Feasibility of a physical activity intervention in a multidisciplinary program in children with cancer. Support. Care Cancer 2020, 28, 2627–2636. [Google Scholar] [CrossRef]
- Stern, M.; Lamanna, J.; Russell, C.; Ewing, L.; Thompson, A.; Trapp, S.; Bitsko, M.; Mazzeo, S. Adaptation of an obesity intervention program for pediatric cancer survivors (NOURISH-T). Clin. Pract. Pediatr. Psychol. 2013, 1, 264. [Google Scholar] [CrossRef]
- Fleming, C.A.; Cohen, J.; Murphy, A.; Wakefield, C.E.; Cohn, R.J.; Naumann, F.L. Parent feeding interactions and practices during childhood cancer treatment. A qualitative investigation. Appetite 2015, 89, 219–225. [Google Scholar] [CrossRef] [PubMed]
- Williams, L.K.; McCarthy, M.C. Parent perceptions of managing child behavioural side-effects of cancer treatment: A qualitative study. Child Care Health Dev. 2015, 41, 611–619. [Google Scholar] [CrossRef]
- Cohen, J.E.; Wakefield, C.E.; Cohn, R.J. Nutritional interventions for survivors of childhood cancer. Cochrane Database Syst. Rev. 2016, 2016, Cd009678. [Google Scholar] [CrossRef]
- Devine, K.A.; Viola, A.S.; Coups, E.J.; Wu, Y.P. Digital health interventions for adolescent and young adult cancer survivors. JCO Clin. Cancer Inform. 2018, 2, 1–15. [Google Scholar] [CrossRef]
- Lassi, Z.S.; Salam, R.A.; Das, J.K.; Wazny, K.; Bhutta, Z.A. An unfinished agenda on adolescent health: Opportunities for interventions. Semin. Perinatol. 2015, 39, 353–360. [Google Scholar] [CrossRef]
- Lewandowska, A.; Zych, B.; Papp, K.; Zrubcová, D.; Kadučáková, H.; Šupínová, M.; Apay, S.E.; Nagórska, M. Problems, Stressors and Needs of Children and Adolescents with Cancer. Children 2021, 8, 1173. [Google Scholar] [CrossRef]
- Ogez, D.; Bourque, C.J.; Péloquin, K.; Ribeiro, R.; Bertout, L.; Curnier, D.; Drouin, S.; Laverdière, C.; Marcil, V.; Rondeau, É.; et al. Definition and improvement of the concept and tools of a psychosocial intervention program for parents in pediatric oncology: A mixed-methods feasibility study conducted with parents and healthcare professionals. Pilot Feasibility Stud. 2019, 5, 20. [Google Scholar] [CrossRef]
- Green, J.; Thorogood, N. Qualitative Methods for Health Research, 4th ed.; SAGE Publications Ltd.: Thousand Oaks, CA, USA, 2018; p. 420. [Google Scholar]
- Damschroder, L.J.; Aron, D.C.; Keith, R.E.; Kirsh, S.R.; Alexander, J.A.; Lowery, J.C. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implement. Sci. 2009, 4, 50. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Wallace, M.L.; Harcourt, D.; Rumsey, N.; Foot, A. Managing appearance changes resulting from cancer treatment: Resilience in adolescent females. Psychooncology 2007, 16, 1019–1027. [Google Scholar] [CrossRef] [PubMed]
- Hokkanen, H.; Eriksson, E.; Ahonen, O.; Salantera, S. Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nurs. 2004, 27, 325–335. [Google Scholar] [CrossRef]
- Sawyer, S.M.; McNeil, R.; Thompson, K.; Orme, L.M.; McCarthy, M. Developmentally appropriate care for adolescents and young adults with cancer: How well is Australia doing? Support. Care Cancer 2019, 27, 1783–1792. [Google Scholar] [CrossRef]
- McNeil, R.; Egsdal, M.; Drew, S.; McCarthy, M.C.; Sawyer, S.M. The changing nature of social support for adolescents and young adults with cancer. Eur. J. Oncol. Nurs. 2019, 43, 101667. [Google Scholar] [CrossRef]
- Kuntz, N.; Anazodo, A.; Bowden, V.; Sender, L.; Morgan, H. Pediatric Cancer Patients’ Treatment Journey: Child, Adolescent, and Young Adult Cancer Narratives. J. Pediatr. Nurs. 2019, 48, 42–48. [Google Scholar] [CrossRef]
- Mascarin, M.; Ferrari, A. The concept of friendship in adolescents with cancer: Reflections and experiences. Tumori 2019, 105, 5–11. [Google Scholar] [CrossRef]
- Olesen, A.M.R.; Missel, M.; Boisen, K.A. The Needs and Care Experiences of Adolescents and Young Adults Treated for Cancer in Adult Surgery Clinics: A Qualitative Study. J. Adolesc. Young Adult Oncol. 2022, 11, 48–55. [Google Scholar] [CrossRef]
- Saloustros, E.; Stark, D.P.; Michailidou, K.; Mountzios, G.; Brugieres, L.; Peccatori, F.A.; Jezdic, S.; Essiaf, S.; Douillard, J.Y.; Bielack, S. The care of adolescents and young adults with cancer: Results of the ESMO/SIOPE survey. ESMO Open 2017, 2, e000252. [Google Scholar] [CrossRef]
- Sironi, G.; Barr, R.D.; Ferrari, A. Models of Care-There Is More Than One Way to Deliver. Cancer J. 2018, 24, 315–320. [Google Scholar] [CrossRef]
- Kent, E.E.; Parry, C.; Montoya, M.J.; Sender, L.S.; Morris, R.A.; Anton-Culver, H. “You’re too young for this”: Adolescent and young adults’ perspectives on cancer survivorship. J. Psychosoc. Oncol. 2012, 30, 260–279. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ferrari, A.; Stark, D.; Peccatori, F.A.; Fern, L.; Laurence, V.; Gaspar, N.; Bozovic-Spasojevic, I.; Smith, O.; De Munter, J.; Derwich, K.; et al. Adolescents and young adults (AYA) with cancer: A position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO Open 2021, 6, 100096. [Google Scholar] [CrossRef] [PubMed]
- Osborn, M.; Johnson, R.; Thompson, K.; Anazodo, A.; Albritton, K.; Ferrari, A.; Stark, D. Models of care for adolescent and young adult cancer programs. Pediatr. Blood Cancer 2019, 66, e27991. [Google Scholar] [CrossRef]
- Fardell, J.E.; Patterson, P.; Wakefield, C.E.; Signorelli, C.; Cohn, R.J.; Anazodo, A.; Zebrack, B.; Sansom-Daly, U.M. A Narrative Review of Models of Care for Adolescents and Young Adults with Cancer: Barriers and Recommendations. J. Adolesc. Young Adult Oncol. 2018, 7, 148–152. [Google Scholar] [CrossRef]
- Vindrola-Padros, C.; Taylor, R.M.; Lea, S.; Hooker, L.; Pearce, S.; Whelan, J.; Gibson, F. Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England? Cancer Nurs. 2016, 39, 358–366. [Google Scholar] [CrossRef]
- Carlsson, T.; Kukkola, L.; Ljungman, L.; Hoven, E.; von Essen, L. Psychological distress in parents of children treated for cancer: An explorative study. PLoS ONE 2019, 14, e0218860. [Google Scholar] [CrossRef]
- Bryan, C.J.; Yeager, D.S.; Hinojosa, C.P.; Chabot, A.; Bergen, H.; Kawamura, M.; Steubing, F. Harnessing adolescent values to motivate healthier eating. Proc. Natl. Acad. Sci. USA 2016, 113, 10830–10835. [Google Scholar] [CrossRef]
- Nass, S.J.; Beaupin, L.K.; Demark-Wahnefried, W.; Fasciano, K.; Ganz, P.A.; Hayes-Lattin, B.; Hudson, M.M.; Nevidjon, B.; Oeffinger, K.C.; Rechis, R.; et al. Identifying and addressing the needs of adolescents and young adults with cancer: Summary of an Institute of Medicine workshop. Oncologist 2015, 20, 186–195. [Google Scholar] [CrossRef]
- Galan, S.; de la Vega, R.; Miro, J. Needs of adolescents and young adults after cancer treatment: A systematic review. Eur. J. Cancer Care 2018, 27, e12558. [Google Scholar] [CrossRef] [PubMed]
- Jones, J.M.; Fitch, M.; Bongard, J.; Maganti, M.; Gupta, A.; D’Agostino, N.; Korenblum, C. The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors. J. Clin. Med. 2020, 9, 1444. [Google Scholar] [CrossRef]
- Hendriks, M.J.; Harju, E.; Michel, G. The unmet needs of childhood cancer survivors in long-term follow-up care: A qualitative study. Psychooncology 2021, 30, 485–492. [Google Scholar] [CrossRef] [PubMed]
- Chien, C.H.; Chang, Y.Y.; Huang, X.Y. The Lived Experiences of Adolescents with Cancer: A Phenomenological Study. Clin. Nurs. Res. 2020, 29, 217–225. [Google Scholar] [CrossRef] [PubMed]
- Al Omari, O.; Wynaden, D. The psychosocial experience of adolescents with haematological malignancies in Jordan: An interpretive phenomenological analysis study. Sci. World J. 2014, 2014, 274036. [Google Scholar] [CrossRef] [PubMed]
- Graetz, D.; Fasciano, K.; Rodriguez-Galindo, C.; Block, S.D.; Mack, J.W. Things that matter: Adolescent and young adult patients’ priorities during cancer care. Pediatr. Blood Cancer 2019, 66, e27883. [Google Scholar] [CrossRef]
- Zebrack, B.J.; Eshelman, D.A.; Hudson, M.M.; Mertens, A.C.; Cotter, K.L.; Foster, B.M.; Loftis, L.; Sozio, M.; Oeffinger, K.C. Health care for childhood cancer survivors: Insights and perspectives from a Delphi panel of young adult survivors of childhood cancer. Cancer 2004, 100, 843–850. [Google Scholar] [CrossRef]
- Mertens, A.C.; Cotter, K.L.; Foster, B.M.; Zebrack, B.J.; Hudson, M.M.; Eshelman, D.; Loftis, L.; Sozio, M.; Oeffinger, K.C. Improving health care for adult survivors of childhood cancer: Recommendations from a delphi panel of health policy experts. Health Policy 2004, 69, 169–178. [Google Scholar] [CrossRef]
- Sawyer, S.M.; McNeil, R.; McCarthy, M.; Orme, L.; Thompson, K.; Drew, S.; Dunt, D. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Support. Care Cancer 2017, 25, 2229–2239. [Google Scholar] [CrossRef]
Stakeholders (n = 12)—Focus Groups | |
---|---|
Sex—female n (%) | 8 (66.7) |
Years of experience in respective profession mean (SD) | 18.4 (10.4) |
Years of experience in oncology mean (SD) | 12.7 (8.1) |
Discipline n (%) | |
Nurse | 1 (8.3) |
Oncologist | 2 (16.7) |
Rehabilitation professional | 5 (41.7) |
Nutritionist | 1 (8.3) |
Psychologist | 1 (8.3) |
Hospital-based teacher | 2 (16.7) |
Stakeholders (n = 6)—Self-report questionnaires | |
Sex—female n (%) | 5 (83.3) |
Years of experience in respective profession | 7.8 (5.5) |
Years of experience in oncology mean (SD) | 4.3 (2.5) |
Discipline n (%) | |
Nutritionist | 2 (33.3) |
Kinesiologist | 4 (66.7) |
Adolescents (n = 9)—Interviews | |
Sex—female n (%) | 4 (40.0) |
Age at moment of interview mean (SD) | 17.0 (1.9) |
Age at diagnosis mean (SD) | 14.6 (1.6) |
Diagnosis n (%) | |
ALL | 5 (55.6) |
Lymphoma | 2 (22.2) |
Sarcoma | 2 (22.2) |
Parents (n = 6)—Interviews | |
Sex—female n (%) | 3 (50) |
Ethnicity n (%) | n = 5 |
Caucasian/white | 5 (100) |
Marital status, n (%) | n = 5 |
Married/common-law partner | 4 (80.0) |
Separated/divorced/widower | 1 (20.0) |
Education level, n (%) | n = 5 |
Less than high school | 0 (0) |
High school | 1 (20.0) |
College | 2 (40.0) |
University | 2 (40.0) |
Approximative personal income, n (%) | n = 5 |
<$29,999 | 0 (0) |
$30,000–$69,999 | 1 (20.0) |
$70,000–$109,999 | 3 (60.0) |
>$110,000 | 0 (0) |
Prefers not to answer | 1 (20.0) |
Needs | Stakeholders’ Quotations from Focus Groups and Self-Report Questionnaires |
---|---|
Need to access activities and services adapted to their age | “You have to make a distinction between them [adolescents] and children. All of the activities are for young children. The clowns are extraordinary and there were plenty of other visits during the pandemic, but all of them were for children.” (Hospital-based teacher, focus group) “I remember my first year here, there was Cachou [a kangaroo mascot] who came to offer teddy bears to kids in oncology. Well, the mascot forced my big teenager to have her picture taken when she had just lost her hair... She was in secondary 5 [grade 11]…Another teacher who was with us at the time got so upset. You know, their body image is important, so when there are many visits and they take pictures…” (Hospital-based teacher, focus group) |
Need for autonomy and freedom | “[They a need to] maintain as much as possible their personal autonomy.” (Kinesiologist, self-report questionnaire) “It’s weird because you start to have a certain degree of freedom and all of a sudden, people come and tell you: you have to eat this, you have to do this, you have to do that. It’s opposite to where they [the adolescents] are at in their mind.” (Hospital-based teacher, focus group) |
Need to have a sense of control on their lives and need to make their own decisions | “I think there are 2 keys to success with teenagers. Consistency is important: even if you [the stakeholders]don’t succeed the first time, at least they know that it is someone who cares about their well-being and who pays attention to them. So, it’s about giving them the opportunity [to make their own decisions] because they can’t decide anymore on most aspects [of their lives]. They have lost authority in their decision-making power and in all of their daily cares. There is something optional about participating [in health promotion interventions]. To have that decision is important to them.” (Oncologist, focus group) |
Need to continue activities that are important to them | “One of our students was passionate about ice skating […]. All of the kinesiologists worked in this direction. She started skating again today, it’s amazing. But this is what motivated her towards her goal because, she was doing competitive ice skating.” (Hospital-based teacher, focus group) |
Need to maintain a sense of normalcy | “It’s good to play video games all the time. But at one point, it just becomes boring, and you lose pleasure because it just isn’t normal…” (Oncologist, focus group) |
Need to keep a certain routine/ Need to maintain limits | “I tell my patients, after the announcement of the diagnosis, whether they are younger or older: “well, look, we have the diagnosis, we will start the treatments, there are parts that will be easier than others.” But I tell parents: he/she remains your child, you know, you still have to continue to have a routine, well, a routine in quotation marks…and [you need to continue to keep] some discipline and a sense of normality as much as possible, not only for your child, but also for the rest of your family.” (Oncologist, focus group) Sometimes we tell them [adolescent patients]: “it doesn’t bother me if you sleep in the morning when I arrive [in your hospital room]. But if you are sleeping because you were playing video games until midnight, it’s not the same as if you sleep because you didn’t feel well the day before and if you felt sick. The idea is to put back a routine and all that.” (Hospital-based teacher, focus group) |
Need to communicate with other teens in the same situation | “I think that yes, the young people would like to meet. You just have to facilitate that. It has to be easy. Because, indeed, there are some teens who say: “well I saw another one [oncology patient] of my age, but that’s all, we didn’t talk to each other…”[…] They[adolescents in oncology]miss being able to communicate, they miss it a lot.” (Psychologist, focus group). |
Need to preserve their schooling and friendships | “It may sound silly, but let’s say a teenager doesn’t have to repeat a full school year and that they can come back in the same group of friends. Well, that is extremely important to them.” (Oncologist, focus group) |
Need to regain a positive body image/ Need to maintain physical capacities | “[Adolescents treated in oncology need to] Maintain, define, and regain the integrity of their personal image associated with the changes of the body, but also with the decrease in [physical] capacities.” (Kinesiologist, self-report questionnaire) “With regards to treatment period, adolescents need to maintain their assets: strength, VO2 max, flexibility, motor skills, etc.” (Kinesiologist, self-report questionnaire) |
Need to confide | “They [adolescents in oncology] miss being able to communicate, they miss it a lot.” (Psychologist, focus group) “They need to be able to be with and to talk to someone else. They may have their families, but when you are a teenager, you do not want to have to talk about that with your parents. Your parents are already aware of many aspects of your private life.” (Hospital-based teacher, focus group) |
Need time to make decision | “I think I can count on the fingers of one hand, those [adolescent patients] who started [French or math classes at the hospital]right away and who were motivated, but we must persevere. We have one who had refused every day for 4 months. But now, when she comes [to the hospital] once a month, she still calls us[the 2 school-based teachers]. But that’s it, it can be long, you have to give them time.” (Hospital-based teacher, focus group) |
Need for independence/Need for space and time without their parents | “Sometimes, there were parents who attended classes and they would answer for their child. I had one [adolescent] this week, who told his mother: “It’s not you who is at school, it’s me.” (Hospital-based teacher, focus group) |
Need time with stakeholder without parental presence | “I often say: if it doesn’t bother you, I would like to ask him/her [alone]routine questions that I ask all teenagers. […] There are sometimes parents who are like: “no, no, it’s ok, we are aware of everything.” You believe them but sometimes, there is a certain discomfort.” (Oncologist, focus group) |
Need to express their feelings and their anger | “[I tell them] It really bothers you, you are not in a good mood, no problem. […] I know today is a “shitty day.” Do you want to do it? [schooling] or you can’t do it? There’s no stress if you just don’t want to. Go ahead, I’m not your parent. Everything you tell me, doesn’t affect me. I still can sleep at night. I’m able to take it...” (Hospital-based teacher, focus group) |
Need for information | “[Adolescents need to] Obtain information and practical knowledge of their new reality and receive clear answers to the numerous questions that are generating[in their mind].” (Kinesiologist, self-report questionnaire) |
Need to find enjoyable activities adapted to their new reality | “[Adolescents tell me:] “I can no longer go outside, do this or that…” Many teenagers discovered that they like cooking during the nutrition workshops. […] I tell them: “There may be activities that you have not discovered yet, maybe I can give you some ideas of activities that other adolescents enjoy doing.” (Psychologist, focus group) [They need] to discover new activities, cool activities for teenagers, that are adapted to their actual condition. They may have never done it before. […] A yoga discovery workshop, a dance or a “zumba” discovery workshop. But the workshops must be adapted. You adapt an activity that the teenager can do or can start doing again. And you tell them how to do it [to avoid injuries].” (Occupational therapist, focus group) |
Barriers | Facilitators | ||||||
---|---|---|---|---|---|---|---|
Intervention characteristics | S | A | P | Intervention characteristics | S | A | P |
Face-to-face interventions | X | Commitment and consistency of stakeholders | X | ||||
One-on-one interventions | X | Stakeholders’ expertise and flexibility | X | X | |||
Use of long-term health as a motivator | X | Personalized interventions | X | X | X | ||
Focus on young children in pediatric hospital environment | X | Remote interventions due to the pandemic | X | X | |||
Too much time between interventions | X | Interventions being held during waiting time between medical appointments | X | ||||
Timing of the beginning of the project | X | X | Individualized approach and recommendations | X | X | ||
Large number of interventions | X | Personalized advice from nutritionist and kinesiologist | X | X | |||
Inner setting | S | A | P | Inner setting | S | A | P |
Schedule conflicts | X | X | X | Encouragement from stakeholders | X | X | X |
Poor timing of intervention appointments (versus chemotherapy) | X | X | X | Stakeholders being understanding towards adolescents’ difficulties | X | X | |
Availability and listening by stakeholders | X | X | |||||
Stakeholders perceived as nice persons to talk to | X | ||||||
Respect from stakeholders when adolescent does not wish to participate | X | X | X | ||||
Outer setting | S | A | P | Outer setting | S | A | P |
Distance between home and the hospital | X | Interventions perceived as taking weight off parents’ shoulders and allowing them to spend more time with their other children | X | ||||
School | X | X | Online schooling due to pandemic | X | |||
Demotivation due to the pandemic/no interest for remote interventions | X | X | X | Parents being together as a couple | X | X | |
Preference for other type of activities (outside the hospital) | X | X | New knowledge acquired in nutrition and kinesiology | X | |||
Adolescents not feeling concerned with proposed interventions | X | X | Family support during treatment period | X | X | ||
Parents being separated | X | ||||||
Lack of activities during the pandemic | X | X | |||||
Pandemic preventing adolescents to be active and reaching out to others | X | X | |||||
Characteristics of individuals | S | A | P | Characteristics of individuals | S | A | P |
Medical contraindication to physical activity | X | X | X | Improvement in adolescents’ self-confidence | X | ||
Desire for autonomy | X | X | Adolescents finding interventions fun/pleasant | X | |||
Pain | X | X | Natural enthusiasm of the adolescent | X | |||
Presence of other health problems | X | X | X | Interventions in kinesiology allowing adolescents to be more active and to preserving muscle mass | X | X | |
Injury/post-surgery problems | X | X | Interventions in kinesiology contributing in increased energy level | X | X | ||
Kinesiology activities being held right after chemotherapy treatment | X | X | X | Interventions in kinesiology helping adolescents return faster to a normal life | X | X | |
Lack of motivation | X | X | X | General interest of the adolescent in participating in activities | X | ||
Physical deconditioning | X | X | Interventions in kinesiology helping adolescents recover better | X | X | ||
Depression | X | Interventions seen as contributors to reducing treatment side effects | X | ||||
Cancer and treatment side effects | X | X | X | Interventions perceived as helping in weight management | X | ||
Fatigue/exhaustion | X | X | X | ||||
Negative self-image | X | ||||||
Loss of physical capabilities and pride associated to this new physical reality | X | ||||||
Loss of hope in their present and future lives | X | ||||||
Fear of the judgment from others | X | ||||||
Social and academic context of older adolescents | X | ||||||
Lack of time | X | X | |||||
Lack of interest | X | ||||||
Difficulty accepting new reality | X | ||||||
Implementation process | S | A | P | Implementation process | S | A | P |
Focus of interventions towards young children | X | X | Interventions being adapted to adolescents’ needs and priorities | X | X | ||
Adolescents not being placed at the center of decision-making | X | Trustworthy relationship between stakeholders and adolescents | X | ||||
Insistency of some stakeholders for participation of teens | X | X | Stakeholders bringing adolescents together | X | X | ||
Difficulty understanding the contribution of each stakeholder | X | X | X | Adolescent’s griefs being addressed before beginning of interventions | X | ||
Lack of coordination between resources | X | X | X | Adolescents being involved in decision-making process | X | ||
Too much paper forms to fill out | X | Adolescents’ participation being valued by stakeholders | X |
Physical Changes | Stakeholder Quotations from Focus Groups and Self-Report Questionnaires |
---|---|
Loss of physical capacities | “It’s not everyone who after that [cancer and treatments] is in great shape. Some have complications that are more important than others. Still, fortunately, we have a population that, after all, in general, is relatively well after their treatment.” (Oncologist, focus group) “Motivation to participate [in health promotion interventions] is greatest when a person is confident that they have the ability to perform the required movements. Adolescents [who had cancer] know that they are no longer able to do everything the way they used to.” (Kinesiologist, self-report questionnaires) |
Loss of self-esteem/ Body image issues | “It’s a period when they live really difficult things and when their body appearance and self-esteem take a big place.” (Nurse, focus group) “We were talking about the relationship to the body. How you perceive your body and all this changes a lot. We can just think of our teenagers on steroids during the induction treatment: they swell a lot and they ask themselves “Will I be able to go back to my pre-treatment weight?” We do what we can to reassure them that they probably will. But the concerns are still present and it’s scary for them.” (Oncologist, focus group) |
Psychological/social impact | Stakeholder quotations from focus groups and self-report questionnaires |
Many changes at the same time | “How can I say it… It’s all the unknown, everything, everything, everything has changed for them.” (Hospital-based teacher, focus group) |
Feeling that their world is falling apart | “For them, it’s like the real world just collapsed. What they say is “I won’t see my friends anymore...”” (Hospital-based teacher, focus group) |
Worries for parents/ Strained relationship with parents | “Parents are afraid for their child. Children are afraid for their parents. And so, at that moment, it becomes a vicious circle of everyone being worried for everyone… Everyone walking on eggshells. And then it becomes a relationship that is tense all the time.” (Oncologist, focus group) |
Lack of understanding from friends | “This reality would be different if they were in secondary 4 or 5 [grades 10–11]. They [the friends] would understand. But in secondary 1 [grade 7], you don’t understand. For older adolescents if someone says “I have cancer”, it’s a notion that they know. They’d be like ok, we’ll see you again when you come back.” (Oncologist, focus group) |
Loss of autonomy | “For teenagers, around 12 years, maybe 13 years of age, it’s the moment when parents are less involved, but you just announced a cancer diagnosis, and they [parents] become very involved. Teenagers want their parents to be involved but at the same time, I do not think they want them to be involved.” (Oncologist, focus group) “It’s the parents’ perception of a sick child: “He needs me.” So the adolescent loses a little of his autonomy sometimes. The disease usually justifies this [overprotection] if it wasn’t something that was already present before. But if it was already present, the disease increases their [parents] intensity.” (Oncologist, focus group) |
Diminished decision-making | “They have lost their authority in their decision-making power.” (Oncologist, focus group) |
Impact on school | “When we talk to teens about the possibility of having to skip a school year and having to repeat that year, it’s like “this cannot be happening to me, it’s ONE year”, it’s terrible for them.” (Hospital-based teacher, focus group) |
Challenges and grief of adolescents in oncology | Stakeholder quotations from focus groups and self-report questionnaires |
Missing themselves as they were before cancer | “[Teens are like] “I miss myself as I was before, I miss my old body, I miss my friends and I miss the interests I used to have, that were the same as my friends. Now, I don’t care about shoes and color of shoes and all that.”” (Psychologist, focus group) “There is all this grief: grief of me, of how I [the adolescent] was before. And that’s where all the self-esteem comes in. But it’s really like: “I [the adolescent] don’t know if I will be able to go back to how I was before [the cancer diagnosis], I would like things to go back as they were before.”” (Psychologist, focus group) |
Grief for activities | “I am thinking of this teen who was really grieving not being able to go on her snowboard at the first snow because she had a big pneumopathy. You can present to her any other alternative activity, but she will not do it.” (Physiotherapist, focus group) “I find that there is the challenge to mobilize them to move forward. […] They [adolescents] can say, among other things. “Ok, I want to go skiing”, but they want to go from “I’ve been lying down for 3 months” to “I’m going skiing tomorrow morning.” It’s the in-between that must be done in rehabilitation, that they do not want, because they would like to already be there, it is the in between, the path to get there, that is difficult.” (Occupational therapist, focus group) |
People perceiving them only as a teenager who has cancer | “I [the adolescent] am more than a young person with cancer. I want to be recognized for something else. But that’s because when they go to LEUCAN [a non-profit foundation that supports cancer-stricken children and their families] activities, they say, “I’m going to have to talk about cancer”. I tell them: No, you don’t have to talk about cancer. They are together, all young people, and they finally end up talking about it, but that’s not what triggers it: They talk about all kinds of things. And then, yes, at some point, they ask others: “So, what is it [cancer type] that you have?” (Psychologist, focus group) |
Loss of friends/ No sense of belonging | “I [the adolescent] miss myself in a gang, with my group, which I am losing” And for many, it got worse with the pandemic.” (Psychologist, focus group) “We have a girl right now who is in secondary 1 [grade 7]. I was talking to her the other day about her friends at school. She was like "what friends?" And I was like, well you have friends at school. But she was like no… because her friends, they don’t understand what she’s going through.” (Hospital-based teacher, focus group) |
Things will never be the same again | “I talk to them a lot about [the fact that] it will never be like before. It’s hard to hear that. I say the same thing to parents. It’s very hard, what I tell them, and I tell them that I know it’s hard to hear, but that’s the reality. There will never be a “like before”, because you are living this experience. But I also tell them that there are going to be beautiful things coming anyway.” (Psychologist, focus group) |
Recommendations | Quotations from Stakeholders, Adolescents or Parents |
---|---|
Build trust in the relationship | “Trust is good. […] But complicity is more than that: it’s making jokes and discovering what they are passionate about and what thrills them.” (Hospital-based teacher, focus group) “If they see you as a person with whom they feel like spending time with and not a person who comes to tell them what to do, I think that it would already be great and a huge plus.” (Oncologist, focus group) “I believe that being able to generate the necessary trust for them to tell us about their new feelings, fears, preferences and motivations can serve as […] a way to help them achieve their new goals or manage their new reality in a better way.” (Kinesiologist, self-report questionnaire) |
Keep in mind treatments may impact mood | “She [an adolescent] had an antisocial spike at one point. It was quite impressive… The Decadron really affected her… It was really bad…” (Hospital-based teacher, focus group) |
Balance constancy and relentlessness | “It is important for them [the adolescents] to be able to have the choice of participating or not in something that is optional. In fact, I think there’s a balance between relentlessness, […] to go back constantly and bother them, and to let them know that we’re here for them.” (Oncologist, focus group) |
Give adolescents the right to change their mind | “There are many [adolescents] who refuse [to participate] from the beginning. We will go back later, we will give them time to think about it, and at one point they accept.” (Hospital-based teacher, focus group) |
Make sure the adolescent perceives the relevance of the intervention | “We can just present them what we do. […] I tell them: “I am your physiotherapist; I can do your treatments. I can see you or not see you, it is you who decides. I can do this, this, and that for you. I can teach you things. When you’re ready, tell me, and I will come.” It can take a month or even a few months before I do anything. […] My needs are not the same as their needs. […] I just wait for them to need me to go help them.” (Physiotherapist, focus group) |
Help adolescents regain their autonomy | “What I like a lot is to make them autonomous, to take charge of their life, their health, to give them the tools and the possibility to do it.” (Occupational therapist, focus group) “At some point, he’s going to need me, I know. He’s going to need me to walk. He’s going to need me to get up and at that point, he will know that someone is there to help him. It’s just... It’s like you said: planting a little seed. Then, they [the adolescents] know that the person is there when they need them.” (Physiotherapist, focus group) |
Have a trusted stakeholder make the first approach | “They [the adolescents] tend to say no because they don’t know exactly what it is [the intervention], but if it comes from someone they trust, I think it can help them make their decision.” (Oncologist, focus group) |
Favor non-moralizing teachings | “[We have to] be careful not to present things as being moralizing, in the sense that: “WE will explain to you how you should eat.”” (Hospital-based teacher, focus group) |
Avoid using long-term health as a motivator | “You do not realize at 12, 13, 14 years old, that you must take care of your body, in the sense that, for them, it is the present moment [that matters].” (Hospital-based teacher, focus group) “Lifestyle habits are part of a long-term concept, which is probably less of a priority for adolescents in the short term. Since it is less "relevant" to them in the short term, they are less involved.” (Nutritionist, self-report questionnaire) “They need to find an external motivation to move. Health is too an abstract concept for it to be a reason for them to be active (even if they are sick).” (Kinesiologist, self-report questionnaire) |
Build objectives with the adolescent | “Teenagers all have a previous life. […] [I ask them:] “Where are you starting from? And what is your goal? I’m going to work with you, I’m going to take you wherever you want to go.” […] Maybe it would be to target an objective directly with the adolescent. It’s having the health professional on board with the adolescent. It’s also about aligning our goals and making them evolve together.” (Physiotherapist, focus group) “I believe that starting from their objectives can be an important key. In order to discover this objective, it is necessary to develop a relationship of trust. A process that can take time, but it is worth it and requires commitment and consistency in the approach.” (Kinesiologist, self-report questionnaire) |
Celebrate victories | “It’s also about measuring [objectives] and celebrating victories. […] It’s to make them realize that they spent 20 min less per day on their tablets. […] When you make them realize that they went to sit in their chair 3 times a day and you try to integrate a little bit of physical activity.” (Physiotherapist, focus group) |
Modernize the approach/Adapt interventions to adolescent’s limited attention span | “We have to modernize a bit the way we communicate with them. I think that the intervention is important, but the way we get the message across is important too. [..] Maybe it’s not a one-hour meeting with a nutritionist, but maybe it’s a YouTube clip of I don’t know how long, maybe a minute? We know on Tik Tok, it’s 15 s. That’s the attention that people have. And it’s the same for adults.” (Oncologist, focus group) |
Make interventions attractive | “It would be interesting to optimize the intervention to make it more attractive and more stimulating for adolescents. To involve them more, to develop virtual content, to make teenagers interact together in a group.” (Nutritionist, self-report questionnaires). |
Develop adolescents’ physical literacy/Develop their confidence and motivation | “Physical literacy is defined as “the motivation, confidence, physical competence, knowledge and understanding that a person possesses and that allows them to take charge of their commitment to physical activity for the rest of their life." […] “To summarize, I think their [the adolescents] specific needs are to develop their confidence and motivation in a context of lifestyle habits.” (Kinesiologist, self-report questionnaires) |
Ask adolescents their preferences before developing an intervention | “The other thing I would say, actually, is to have teenagers either in treatment or who have finished their treatment with us in this discussion. It could really be relevant because, you know, we have ideas, but maybe they’re going to be like “No, not at all, you’re’stupid’ to think like that.” (Oncologist, focus group) |
Bring adolescents together/ Develop specific activities for them | I think we should bring them [adolescents] together and develop specific activities for them that are not moralistic. (Nutritionist, self-report questionnaire) |
Have a space dedicated for adolescents in oncology | “A few years ago, we had thought about this. You know: “how can we make it easier for adolescents to spend their days here?” And that’s when the idea of having a room for adolescents emerged.” (Psychologist, focus group) “We could ask LEUCAN [a non-profit foundation that supports cancer-stricken children and their families] to organize something for our teenagers… They don’t need something extraordinary. We won’t ask for a loft with non-alcoholic champagne or whatever. But we already have a physical space here, we already have a TV, you do not add the cable, you just make sure to have Netflix, Disney and Prime or whatever. That would make their waiting time here already much easier.” (Oncologist, focus group) |
Address the griefs before initiating activities | “I think there are a lot of griefs to deal with before you even start an activity. Finding a way to include friends could be really positive, I think. Show them that they can still do a lot of things despite their illness. Maybe discovering other sports or activities that they can’t compare to "before the disease."” (Kinesiologist, self-report questionnaire) |
Respect adolescents’ schedules | “I had a lot of sleep problems with the chemotherapy treatments and I would sleep here in the morning at the hospital. And the ladies from the VIE project respected that I was sleeping. They didn’t wake me up, contrary to other people in other projects. They understood that if I was sleeping, it was because I needed to sleep.” (Male, 16 years old at diagnosis) |
Plan interventions between medical appointments | "For sure that it’s good between appointments. Sometimes they’d come and get me and we’d play badminton. It helped to pass time between appointments because sometimes it’s weird, they give you an appointment at 12:30 pm and the other one is at like 3:45 pm." (Male, 15 years old at diagnosis). |
Consider treatment side effects when scheduling visits | "Sometimes they would come see me like after chemo and I was feeling so sick, I know I wouldn’t have been able bend over and all that. That’s when it didn’t work." (Male, 15 years old at diagnosis). “It wasn’t that bad... Well, maybe when we were doing our training sessions, the timing wasn’t always right. Sometimes they would come either while I was getting chemo, I had my pole and all, or afterwards. It wasn’t always the [best timing]. Let’s say I would have done it before [the chemo] maybe.” (Female, 15 years old at diagnosis) |
Personalize and adapt the interventions | "It helped me come up with a home exercise plan that was more tailored to what I was able to do. Like, it made me get better, but it didn’t get to the point where it hurt me..." (Male, 15 years old at diagnosis). “I had several restrictions because everyone is different and they all have different restrictions and they [stakeholders] adapted to what I could and couldn’t do when I could and when I couldn’t do it. They were very flexible.” (Female, 13 years old at diagnosis) |
Offer remote interventions | “You ask yourself where do you put your energy to save her [adolescent daughter with cancer]? But the fact remains that there are 3 others at home... […]. It complicates the schedule I would say... The schedule management... […] You have the VIE project that comes along, and they tell you: look we help you with nutrition, we help you with physical activity, […] And, even better, activities were being held remotely. With COVID [-19 pandemic], we really appreciated the remote activities...” (Father of female, 13 years old at diagnosis) “Well, personally, I found that we had more remote services with the pandemic, than when we did before... You know, when we would come here [at the hospital], we’d come once a month. Then, we had weekly exercises... You know, for me the pandemic was kind of a lifesaver…” (Father of male, 12 years old at diagnosis) |
Adapt education content to older adolescents | "Make people understand: “Look, I’m making you do this, it’s going to help you with that.” [...] I think that could have helped me. Maybe less so for children like 4–5 years of age. But I was 18 at the time. I think it could have helped me understand why I was doing it [exercise], not just the way it should be done. [...] I think to help young people who are more like teenagers, 13–14 years old, to understand: “Ok, you know, I’m not here to piss you off or to make you sweat there, I’m here to help you, look it’s going to do that [for you].”” (Female, 17 years old at diagnosis) |
Remember that the adolescent may be having a difficult day | “During treatments, I often felt unwell so I... You feel like you’re weak and your whole-body hurts, so it’s hard to say: “Okay, this morning I’m going to get up and I’m going to go to the gym with the physiotherapists...”” (Female patient, 17 years old at diagnosis). |
Offer follow-up in the longer term if needed | “My expectation with respect to the rest of the project, well if you can continue to help us... You know when the physio will be finished and all that… For sure we would appreciate... to find out how we can bring [daughter’s name] back to her 100%. And I know this is part of a research project […], but if you see in your observations that there are certain problems that you can help with, then... offer that too. You can tell the hospital that you followed a participant and that there might be a need for that [specific] long-term [health] care for this patient…” (Father of male, 12 years old at diagnosis) |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Kerba, J.; Demers, C.; Bélanger, V.; Napartuk, M.; Bouchard, I.; Meloche, C.; Morel, S.; Prud’homme, N.; Gélinas, I.; Higgins, J.; et al. Needs, Barriers and Facilitators of Adolescents Participating in a Lifestyle Promotion Program in Oncology: Stakeholders, Adolescents and Parents’ Perspective. Children 2022, 9, 1340. https://doi.org/10.3390/children9091340
Kerba J, Demers C, Bélanger V, Napartuk M, Bouchard I, Meloche C, Morel S, Prud’homme N, Gélinas I, Higgins J, et al. Needs, Barriers and Facilitators of Adolescents Participating in a Lifestyle Promotion Program in Oncology: Stakeholders, Adolescents and Parents’ Perspective. Children. 2022; 9(9):1340. https://doi.org/10.3390/children9091340
Chicago/Turabian StyleKerba, Johanne, Catherine Demers, Véronique Bélanger, Mélanie Napartuk, Isabelle Bouchard, Caroline Meloche, Sophia Morel, Nicolas Prud’homme, Isabelle Gélinas, Johanne Higgins, and et al. 2022. "Needs, Barriers and Facilitators of Adolescents Participating in a Lifestyle Promotion Program in Oncology: Stakeholders, Adolescents and Parents’ Perspective" Children 9, no. 9: 1340. https://doi.org/10.3390/children9091340