Information Needs and Preferences on Cancer-Related Symptoms Among Children with Cancer and Their Parents: A Systematic Review
DOI:
https://doi.org/10.62464/v713eq35Keywords:
Paediatrics, Oncology, Information needs, Quantitative methods, Qualitative methods, Mixed methodsAbstract
Objective: This study aimed to explore information needs and preferences of children with cancer and their parents about cancer-related symptoms. Methods: A systematic review of the literature was conducted using five databases and citation searches. The quality of eligible studies was assessed with the Mixed Methods Appraisal Tool. Results: Thirty studies were included (N=256 children and N=1778 parents/guardians). Children’s perspectives on their information needs were under examined and different from their parents. Both children and parents required more information about symptoms and late effects. Associations between participants’ characteristics and their information needs about symptoms and late effects were inconclusive. Parents preferred to receive information from doctors, in verbal and written formats, more than from online sources. Conclusions: Children with cancer and their parents need more tailored information about symptoms and late effects. Further research is required to identify how best to support individualized information needs and delivery preferences of children with cancer and their parents.
References
Arabiat, D. H., & Altamimi, A. (2013). Unmet care needs of parents of children with cancer in Jordan: Implications for bed-side practice. Journal of Clinical Nursing, 22(3-4), 531-539. https://doi.org/10.1111/jocn.12122
Arpaci, T., Toruner, E., & Altay, N. (2018). Assessment of nutritional problems in pediatric patients with cancer and the information needs of their parents: A parental perspective. Asia-Pacific Journal of Oncology Nursing, 5(2), 231-236. https://doi.org/10.4103/apjon.apjon_78_17
Bahrami, M., Namnabati, M., Mokarian, F., Oujian, P., & Arbon, P. (2017). Information-sharing challenges between adolescents with cancer, their parents and health care providers: A qualitative study. Supportive Care in Cancer, 25(5), 1587-1596. https://doi.org/10.1007/s00520-016-3561-z
Çavusoglu, H. (2000). Problems related to the diagnosis and treatment of adolescents with leukemia. Comprehensive Child and Adolescent Nursing, 23(1), 15-26. https://doi.org/10.1080/014608600265183
Christen, S., Weishaupt, E., Vetsch, J., Rueegg, C. S., Mader, L., Dehler, S., & Michel, G. (2019). Perceived information provision and information needs in adolescent and young adult cancer survivors. European Journal of Cancer Care, 28(1), e12892. https://doi.org/10.1111/ecc.12892
Cleeland, C., Fisch, M., & Dunn, A. (2010). Introduction to cancer symptom science. In C. Cleeland, A. Dunn, & M. Fisch (Eds.), Cancer Symptom Science Measurement, Mechanisms, and Management (pp. 1-3). Cambridge University Press.
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
Darcy, L., Björk, M., Knutsson, S., Granlund, M., & Enskär, K. (2016). Following young children's health and functioning in everyday life through their cancer trajectory. Journal of Pediatric Oncology Nursing, 33(3), 173-189. https://doi.org/10.1177/1043454215610489
Dyson, G. J., Thompson, K., Palmer, S., Thomas, D. M., & Schofield, P. (2012). The relationship between unmet needs and distress amongst young people with cancer. Supportive Care in Cancer, 20(1), 75-85. https://doi.org/10.1007/s00520-010-1059-7
Ellis, R., & Leventhal, B. (1993). Information needs and decision‐making preferences of children with cancer. Psycho‐Oncology, 2(4), 277-284. https://doi.org/10.1002/pon.2960020407
Fitch, M. I. (2008). Supportive care framework. Canadian Oncology Nursing Journal, 18(1), 6-14. https://doi.org/10.5737/1181912x181614
Gibson, F., Aldiss, S., Horstman, M., Kumpunen, S., & Richardson, A. (2010). Children and young people's experiences of cancer care: A qualitative research study using participatory methods. International Journal of Nursing Studies, 47(11), 1397-1407. https://doi.org/10.1016/j.ijnurstu.2010.03.019
Gunawan, S., ten Broeke, C., van de Ven, P., Arnoldussen, M., Kaspers, G., & Mostert, S. (2016). Parental experiences with chemotherapy-induced alopecia among childhood cancer patients in Indonesia. Asian Pacific Journal of Cancer Prevention, 17(4), 1717-1723. https://doi.org/10.7314/APJCP.2016.17.4.1717
Gunawan, S., Wolters, E., van Dongen, J., van de Ven, P., Sitaresmi, M., Veerman, A., Mantik, M., Kaspers, G., & Mostert, S. (2014). Parents' and health-care providers' perspectives on side-effects of childhood cancer treatment in Indonesia. Asian Pacific Journal of Cancer Prevention, 15(8), 3593-3599. https://doi.org/10.7314/APJCP.2014.15.8.3593
Hedén, L., Pöder, U., Von Essen, L., & Ljungman, G. (2013). Parents' perceptions of their child's symptom burden during and after cancer treatment. Journal of Pain and Symptom Management, 46(3), 366-375. https://doi.org/10.1016/j.jpainsymman.2012.09.012
Hobbie, W. L., Ogle, S. K., Reilly, M., Ginsberg, J. P., Rourke, M., Ratcliffe, S., & Deatrick, J. A. (2010). Identifying the educational needs of parents at the completion of their child's cancer therapy. Journal of Pediatric Oncology Nursing, 27(4), 190-195. https://doi.org/10.1177/1043454209360778
Hokkanen, H., Eriksson, E., Ahonen, O., & Salantera, S. (2004). Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nursing, 27(4), 325-335. https://doi.org/10.1097/00002820-200407000-00010
Hong, Q. N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., Gagnon, M.-P., Griffiths, F., Nicolau, B., O’Cathain, A., Rousseau, M.-C., & Vedel, I. (2018). Mixed Methods Appraisal Tool (MMAT), version 2018. Registration of Copyright (#1148552), Canadian Intellectual Property Office, Industry Canada. . Retrieved 01 July 2020 from http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/127916259/MMAT_2018_criteria-manual_2018-08-01_ENG.pdf
Hooke, M. C., & Linder, L. A. (2019). Symptoms in children receiving treatment for cancer - Part I: Fatigue, sleep disturbance, and nausea/vomiting. Journal of Pediatric Oncology Nursing, 36(4), 244-261. https://doi.org/10.1177/1043454219849576
Hooker, L. (1997). Information needs of teenagers with cancer: Developing a tool to explore the perceptions of patients and professionals. Journal of Cancer Nursing, 1(4), 160-168. https://doi.org/10.1016/S1364-9825(97)80512-3
Huang, I. C., Brinkman, T. M., Kenzik, K., Gurney, J. G., Ness, K. K., Lanctot, J., Shenkman, E., Robison, L. L., Hudson, M. M., & Krull, K. R. (2013). Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: A report from the St Jude lifetime cohort studying. Journal of Clinical Oncology, 31(33), 4242-4251. https://doi.org/10.1200/JCO.2012.47.8867
Ji, Q., Currin-McCulloch, J. A., Zhang, A., Streeter, C. L., Jones, B. L., & Chen, Y. (2018). Assessing the needs of parents of children diagnosed with cancer in China: A psychometric study developing a needs assessment tool. Journal of Pediatric Oncology Nursing, 35(1), 6-15. https://doi.org/10.1177/1043454217723862
Karst, J. S., Hoag, J. A., Chan, S. F., Schmidt, D. J., Anderson, L. J., Englebert, N. E., Igler, E. C., & Bingen, K. M. (2018). Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families. Pediatric Blood & Cancer, 65(8), e27109. https://doi.org/10.1002/pbc.27109
Kasparian, N. A., Winlaw, D. S., & Sholler, G. F. (2016). “Congenital heart health”: How psychological care can make a difference. Medical Journal of Australia, 205(3), 104-107. https://doi.org/10.5694/mja16.00392
Keegan, T. H. M., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X. C., West, M. M., Hamilton, A. S., Zebrack, B., Bellizzi, K. M., & Smith, A. W. (2012). Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study. Journal of Cancer Survivorship, 6(3), 239-250. https://doi.org/10.1007/s11764-012-0219-9
Kelly, K. P., & Porock, D. (2005). A Survey of pediatric oncology nurses’ perceptions of parent educational needs. Journal of Pediatric Oncology Nursing, 22(1), 58-66. https://doi.org/10.1177/1043454204272537
Kerr, L. M. J., Harrison, M. B., Medves, J., Tranmer, J. E., & Fitch, M. I. (2007). Understanding the supportive care needs of parents of children with cancer: An approach to local needs assessment. Journal of Pediatric Oncology Nursing, 24(5), 279-293. https://doi.org/10.1177/1043454207304907
Kestler, S. A., & LoBiondo-Wood, G. (2012). Review of symptom experiences in children and adolescents with cancer. Cancer Nursing, 35(2), E31-E49. https://doi.org/10.1097/NCC.0b013e3182207a2a
Kilicarslan-Toruner, E., & Akgun-Citak, E. (2013). Information-seeking behaviours and decision-making process of parents of children with cancer. European Journal of Oncology Nursing, 17(2), 176-183. https://doi.org/10.1016/j.ejon.2012.03.001
Kin-Fong Cheng, K. (2009). Oral mucositis: A phenomenological study of pediatric patients' and their parents' perspectives and experiences. Supportive Care in Cancer, 17(7), 829-837. https://doi.org/10.1007/s00520-009-0618-2
Koohkan, E., Yousofian, S., Rajabi, G., & Zare-Farashbandi, F. (2019). Health information needs of families at childhood cancer: A qualitative study. Journal of Education and Health Promotion, 8(1), 246. https://doi.org/10.4103/jehp.jehp_300_19
Lam, C. G., Howard, S. C., Bouffet, E., & Pritchard-Jones, K. (2019). Science and health for all children with cancer. Science, 363(6432), 1182-1186. https://doi.org/10.1126/science.aaw4892
Levine, D. R., Liederbach, E., Johnson, L. M., Kaye, E. C., Spraker-Perlman, H., Mandrell, B., Pritchard, M., Sykes, A., Lu, Z., Wendler, D., & Baker, J. N. (2019). Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology. Cancer, 125(9), 1518-1526. https://doi.org/http://dx.doi.org/10.1002/cncr.31937
Linder, L. A., & Hooke, M. C. (2019). Symptoms in children receiving treatment for cancer - Part II: Pain, sadness, and symptom clusters. Journal of Pediatric Oncology Nursing, 36(4), 262-279. https://doi.org/10.1177/1043454219849578
Ljungman, G., Gordh, T., Sörensen, S., & Kreuger, A. (1999). Pain in paediatric oncology: Interviews with children, adolescents and their parents. Acta Paediatrica, International Journal of Paediatrics, 88(6), 623-630. https://doi.org/10.1080/08035259950169279
Ljungman, G., McGrath, P. J., Cooper, E., Widger, K., Ceccolini, J., Fernandez, C. V., Frager, G., & Wilkins, K. (2003). Psychosocial needs of families with a child with cancer. Journal of Pediatric Hematology/Oncology, 25(3), 223-231. https://doi.org/10.1097/00043426-200303000-00008
Loades, M. E., James, V., Baker, L., Jordan, A., & Sharma, A. (2020). Parental experiences of adolescent cancer-related fatigue: A qualitative study. Journal of Pediatric Psychology, 45(10), 1093-1102. https://doi.org/10.1093/jpepsy/jsaa080
Lyu, Q. Y., Wong, F. K. Y., You, L. M., & Zhou, X. Z. (2019). Unmet family needs concerning healthcare services in the setting of childhood hospitalization for cancer treatment in Mainland China: A qualitative study. Journal of Pediatric Nursing, 44, E66-E71. https://doi.org/10.1016/j.pedn.2018.11.003
McCarthy, M. C., McNeil, R., Drew, S., Orme, L., & Sawyer, S. M. (2018). Information needs of adolescent and young adult cancer patients and their parent-carers. Supportive Care in Cancer, 26(5), 1655-1664. https://doi.org/10.1007/s00520-017-3984-1
McGrath, P., Kail-Buckley, S., & Philips, E. (2007). Learning a new language. Informational issues for parents of children treated for acute lymphoblastic leukaemia. Austral-Asian Journal of Cancer, 6(4), 205-212.
McLaughlin, C. A., Gordon, K., Hoag, J., Ranney, L., Terwilliger, N. B., Ureda, T., & Rodgers, C. (2019). Factors affecting adolescents' willingness to communicate symptoms during cancer treatment: A systematic review from the Children's Oncology Group. Journal of Adolescent and Young Adult Oncology, 8(2), 105-113. https://doi.org/10.1089/jayao.2018.0111
Mercer, M., & Ritchie, J. A. (1997a). Home community cancer care: Parents' perspectives. Journal of Pediatric Nursing, 12(3), 133-141. https://doi.org/10.1016/S0882-5963(97)80070-X
Mercer, M., & Ritchie, J. A. (1997b). Tag team parenting of children with cancer. Journal of Pediatric Nursing, 12(6), 331-341. https://doi.org/10.1016/S0882-5963(97)80059-0
Miller, E., Jacob, E., & Hockenberry, M. J. (2011). Nausea, pain, fatigue, and multiple symptoms in hospitalized children with cancer. Oncology Nursing Forum, 38(5), E382-393. https://doi.org/10.1188/11.Onf.E382-e393
Mooney, K., Berry, D. L., Whisenant, M., & Sjoberg, D. (2017). Improving cancer care through the patient experience: How to use patient-reported outcomes in clinical practice. American Society of Clinical Oncology Educational Book(37), 695-704. https://doi.org/10.1200/edbk_175418
Motlagh, M. E., Mirzaei-Alavijeh, M., & Hosseini, S. N. (2019). Information needs assessment among parents of children with cancer. Asian Pacific Journal of Cancer Prevention, 20(6), 1865-1870. https://doi.org/10.31557/APJCP.2019.20.6.1865
Mueller, E. L., Cochrane, A. R., Bennett, W. E., & Carroll, A. E. (2018). A survey of mobile technology usage and desires by caregivers of children with cancer. Pediatric Blood & Cancer, 65(11), e27359. https://doi.org/10.1002/pbc.27359
Nagel, K., Eves, M., Waterhouse, L., Alyman, C., Posgate, S., Jamieson, J., Metzger, V., & Wright, M. (2002). The development of an off-therapy needs questionnaire and protocol for survivors of childhood cancer. Journal of Pediatric Oncology Nursing, 19(6), 229-233. https://doi.org/10.1177/104345420201900607
Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., . . . Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372, n71. https://doi.org/10.1136/bmj.n71
Park, M., Suh, E. E., & Yu, S. Y. (2021). Uncertainty and nursing needs of parents with pediatric cancer patients in different treatment phases: A cross-sectional study. International Journal of Environmental Research and Public Health, 18(8), 4253. https://doi.org/10.3390/ijerph18084253
Pyke-Grimm, K. A., Degner, L., Small, A., & Mueller, B. (1999). Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study. Journal of Pediatric Oncology Nursing, 16(1), 13-24. https://doi.org/10.1177/104345429901600103
Rao, V. N., Anantharaman Rajeshwari, R., Rajagopal, R., & Normen, M. (2021). Inception of a pediatric cancer caregiver support group guided by parental needs. Cancer Reports. https://doi.org/10.1002/cnr2.1469
Ringnér, A., Jansson, L., & Graneheim, U. H. (2011). Parental experiences of information within pediatric oncology. Journal of Pediatric Oncology Nursing, 28(3), 244-251. https://doi.org/10.1177/1043454211409587
Rodgers, C. C., Laing, C. M., Herring, R. A., Tena, N., Leonardelli, A., Hockenberry, M., & Hendricks-Ferguson, V. (2016). Understanding effective delivery of patient and family education in pediatric oncology: A systematic review from the Children’s Oncology Group. Journal of Pediatric Oncology Nursing, 33(6), 432-446. https://doi.org/10.1177/1043454216659449
Sievers, Y., Roser, K., Scheinemann, K., Michel, G., & Ilic, A. (2024). The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence. Patient Education and Counseling, 126, 108316. https://doi.org/https://doi.org/10.1016/j.pec.2024.108316
Smith, L. E., Maybach, A. M., Feldman, A., Darling, A., Akard, T. F., & Gilmer, M. J. (2019). Parent and child preferences and styles of communication about cancer diagnoses and treatment. Journal of Pediatric Oncology Nursing, 36(6), 390-401. https://doi.org/10.1177/1043454219859235
Stein, K. D., Syrjala, K. L., & Andrykowski, M. A. (2008). Physical and psychological long-term and late effects of cancer. Cancer, 1(11S), 2577-2592. https://doi.org/10.1002/cncr.23448
Stern, C., Lizarondo, L., Carrier, J., Godfrey, C., Rieger, K., Salmond, S., Apóstolo, J., Kirkpatrick, P., & Loveday, H. (2020). Methodological guidance for the conduct of mixed methods systematic reviews. JBI Evidence Synthesis, 18(10), 2108-2118. https://doi.org/10.11124/JBISRIR-D-19-00169
Timmins, F. (2006). Exploring the concept of 'information need'. International Journal of Nursing Practice, 12(6), 375-381. https://doi.org/10.1111/j.1440-172X.2006.00597.x
Tsangaris, E., Johnson, J., Taylor, R., Fern, L., Bryant-Lukosius, D., Barr, R., Fraser, G., & Klassen, A. (2014). Identifying the supportive care needs of adolescent and young adult survivors of cancer: A qualitative analysis and systematic literature review. Supportive Care in Cancer, 22(4), 947-959. https://doi.org/10.1007/s00520-013-2053-7
Vetsch, J., Fardell, J. E., Wakefield, C. E., Signorelli, C., Michel, G., McLoone, J. K., Walwyn, T., Tapp, H., Truscott, J., & Cohn, R. J. (2017). “Forewarned and forearmed”: Long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care. Patient Education and Counseling, 100(2), 355-363. https://doi.org/10.1016/j.pec.2016.09.013
Vetsch, J., Rueegg, C. S., Gianinazzi, M. E., Bergstrasser, E., von der Weid, N. X., & Michel, G. (2015). Information needs in parents of long-term childhood cancer survivors. Pediatric Blood & Cancer, 62(5), 859-866. https://doi.org/10.1002/pbc.25418
Wakefield, C. E., Butow, P., Fleming, C. A., Daniel, G., & Cohn, R. J. (2012). Family information needs at childhood cancer treatment completion. Pediatric Blood & Cancer, 58(4), 621-626. https://doi.org/10.1002/pbc.23316
Walker, C., Wright, P., Curry, D., Panzarella, C., Adams, J., Gleason-Morgan, D., Kramer, R., Vogel, R., & Weekes, D. (1993). A Delphi study of pediatric oncology nurses' facilitative behaviors. Journal of Pediatric Oncology Nursing, 10(4), 126-132. https://doi.org/10.1177/104345429301000402
Ward, E., Desantis, C., Robbins, A., Kohler, B., & Jemal, A. (2014). Childhood and adolescent cancer statistics, 2014. CA: A Cancer Journal for Clinicians, 64(2), 83-103. https://doi.org/10.3322/caac.21219
Wells, L. M., Heiney, S. P., Swygert, E., Troficanto, G., Stokes, C., & Ettinger, R. S. (1990). Psychosocial stressors, coping resources, and information needs of parents of adolescent cancer patients. Journal of Pediatric Oncology Nursing, 7(4), 145-148. https://doi.org/10.1177/104345429000700404.
Downloads
Published
Issue
Section
License
Copyright (c) 2025 International Journal of Physical Therapy Research & Practice
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
