Children Undergoing Radiotherapy: Swedish Parents' Experiences and Suggestions for Improvement

Charlotte Ångström-Brännström, Gunn Engvall, Tara Mullaney, Kristina Nilsson, Gun Wickart-Johansson, Anna-Maja Svärd, Tufve Nyholm, Jack Lindh, Viveca Lindh, Charlotte Ångström-Brännström, Gunn Engvall, Tara Mullaney, Kristina Nilsson, Gun Wickart-Johansson, Anna-Maja Svärd, Tufve Nyholm, Jack Lindh, Viveca Lindh

Abstract

Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multicenter study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.

Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

References

    1. Gustafsson G, Kogner P, Heyman M (Editors). Childhood Cancer Incidence and Survival in Sweden 1984–2010—Report 2013: In: The Swedish Childhood Cancer Registry, Karolinska institutet, Stockholm, Sweden: Available: . Assesed 10 sept 2014.
    1. Hildenbrand AK, Clawson KJ, Alderfer MA, Marsac ML. Coping with pediatric cancer: strategies employed by children and their parents to manage cancer-related stressors during treatment. J Pediatr Oncol Nurs. 2011;28(6):344–54. 10.1177/1043454211430823
    1. Griffiths M, Schweitzer R, Yates P. Childhood experiences of cancer: an interpretative phenomenological analysis approach. J Pediatr Oncol Nurs. 2011;28(2):83–92. 10.1177/1043454210377902
    1. Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs. 2011;28(3):143–53. 10.1177/1043454210378015
    1. Jackson AC, Stewart H, O'Toole M, Tokatlian N, Enderby K, Miller J, et al. Pediatric brain tumor patients: their parents' perceptions of the hospital experience. J Pediatr Oncol Nurs. 2007;24(2):95–105. .
    1. Soanes L, Hargrave D, Smith L, Gibson F. What are the experiences of the child with a brain tumour and their parents? Eur J Oncol Nurs. 2009;13(4):255–61. 10.1016/j.ejon.2009.03.009
    1. Ångstrom-Brannström C, Norberg A, Strandberg G, Söderberg A, Dahlqvist V. Parents' experiences of what comforts them when their child is suffering from cancer. J Pediatr Oncol Nurs. 2010;27(5):266–75. 10.1177/1043454210364623
    1. Björk M, Wiebe T, Hallström I. An everyday struggle-Swedish families' lived experiences during a child's cancer treatment. J Pediatr Nurs. 2009;24(5):423–32. 10.1016/j.pedn.2008.01.082
    1. Olsen PR, Harder I. Keeping their world together—meanings and actions created through network-focused nursing in teenager and young adult cancer care. Cancer Nurs. 2009;32(6):493–502. 10.1097/NCC.0b013e3181b3857e
    1. Bucholtz JD. Comforting children during radiotherapy. Oncol Nurs Forum. 1994;21(6):987–94. .
    1. Filin A, Treisman S, Peles Bortz A. Radiation therapy preparation by a multidisciplinary team for childhood cancer patients aged 31/2 to 6 years. J Pediatr Oncol Nurs. 2009;26(2):81–5. 10.1177/1043454208328766
    1. Shrimpton BJ, Willis DJ, Tongs CD, Rolfo AG. Movie making as a cognitive distraction for paediatric patients receiving radiotherapy treatment: qualitative interview study. BMJ Open. 2013;3(1). 10.1136/bmjopen-2012-001666
    1. Delany C, Conwell M. Ethics and teamwork for pediatric medical imaging procedures: insights from educational play therapy. Pediatr Radiol. 2012;42(2):139–46. 10.1007/s00247-011-2271-4
    1. Klosky JL, Garces-Webb DM, Buscemi J, Schum L, Tyc VL, Merchant TE. Examination of an interactive-educational intervention in improving parent and child distress outcomes associated with pediatric radiation therapy procedures. Children's Healthcare. 2007;36(4):323–34.
    1. Scott L, Langton F, O'Donoghue J. Minimising the use of sedation/anaesthesia in young children receiving radiotherapy through an effective play preparation programme. Eur J Oncol Nurs. 2002;6(1):15–22. .
    1. Haeberli S, Grotzer MA, Niggli FK, Landolt MA, Linsenmeier C, Ammann RA, et al. A psychoeducational intervention reduces the need for anesthesia during radiotherapy for young childhood cancer patients. Radiat Oncol. 2008;3:17 10.1186/1748-717X-3-17 .
    1. Willis D, Barry P. Audiovisual interventions to reduce the use of general anaesthesia with paediatric patients during radiation therapy. J Med Imaging Radiat Oncol. 2010;54(3):249–55. 10.1111/j.1754-9485.2010.02165.x
    1. Bertoni F, Bonardi A, Magno L, Mandracchia S, Martinelli L, Terraneo F, et al. Hypnosis instead of general anaesthesia in paediatric radiotherapy: report of three cases. Radiother Oncol. 1999;52(2):185–90. .
    1. Kristensen I, Lindh J, Nilsson P, Agrup M, Bergstrom P, Bjork-Eriksson T, et al. Telemedicine as a tool for sharing competence in paediatric radiotherapy: implementation and initial experiences from a Swedish project. Acta Oncol. 2009;48(1):146–52. 10.1080/02841860802409520
    1. Mealer M, Jones Rn J. Methodological and ethical issues related to qualitative telephone interviews on sensitive topics. Nurse Res. 2014;21(4):32–7. 10.7748/nr2014.03.21.4.32.e1229
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12. .
    1. Kazak AE, Alderfer M, Rourke MT, Simms S, Streisand R, Grossman JR. Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Pediatr Psychol. 2004;29(3):211–9. Epub 2004/05/08. .
    1. Pöder U, Ljungman G, von Essen L. Posttraumatic stress disorder among parents of children on cancer treatment: a longitudinal study. Psychooncology. 2008;17(5):430–7. Epub 2007/09/12. 10.1002/pon.1263 .
    1. Tornqvist E, Månsson A, Hallström I. Children having magnetic resonance imaging: A preparatory storybook and audio/visual media are preferable to anesthesia or deep sedation. J Child Health Care. 2014. 10.1177/1367493513518374 .
    1. Pöder U, Ljungman G, von Essen L. Parents' perceptions of their children's cancer-related symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage. 2010;40(5):661–70. 10.1016/j.jpainsymman.2010.02.012
    1. Heden L, Pöder U, von Essen L, Ljungman G. Parents' perceptions of their child's symptom burden during and after cancer treatment. J Pain Symptom Manage. 2013;46(3):366–75. 10.1016/j.jpainsymman.2012.09.012
    1. Benedetti GM, Garanhani ML, Sales CA. The treatment of childhood cancer: unveiling the experience of parents. Rev Lat Am Enfermagem. 2014;22(3):425–31. .
    1. Bowlby J. Attachment and loss: London: Random House Pimlico; 1973.
    1. Gibbins J, Steinhardt K, Beinart H. A systematic review of qualitative studies exploring the experience of parents whose child is diagnosed and treated for cancer. J Pediatr Oncol Nurs. 2012;29(5):253–71. 10.1177/1043454212452791
    1. Harrison TM. Family-centered pediatric nursing care: state of the science. J Pediatr Nurs. 2010;25(5):335–43. 10.1016/j.pedn.2009.01.006
    1. Mullaney T, Pettersson H, Nyholm T, Stolterman E. Thinking beyond the cure: A case for human-centered design in cancer care. International Journal of Design. 2012;6(3):27–39.
    1. Patton M. Qualitative research and evaluation methods: London: Sage Publications Thousand Oaks CA; 2002.
    1. Trier-Bieniek A. Framing the telephone interview as a participant-centred tool for qualitative research: a methodological discussion. Qualitative Research. 2012;12(6):630–44.

Source: PubMed

Спонсоры и соавторы

Заболевания

Медикаментозные вмешательства

Подписаться