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Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences

Received: 30 April 2019     Accepted: 10 June 2019     Published: 9 July 2019
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Abstract

Introduction: Retinoblastoma is a cancerous tumor of the retina. It is a rare pathology that affects each year, in France, one child out of 15,000 to 20,000 births. In Morocco, and in a prospective study conducted over 2 years and 3 months in the pediatric ophthalmology department in Casablanca, the annual incidence of retinoblastoma was estimated at 18 cases per year. The diagnosis of cancer, like any other serious illness, provokes an intense feeling of guilt in the child and in his parents. The retinoblastoma diagnosis announcement remains a difficult and delicate moment for caregivers and parents. The purpose of our work is to describe the experience of the parents of a child with retinoblastoma and to assess the degree of satisfaction of these children both for the treatment of their child and for clarity. information transmitted. Material and method: We conducted a descriptive cross-sectional study of the parents of children with retinoblastoma who received care in the ophthalmology department of Mohammed VI CHU Marrakech Morocco, and this over a period of one year from March 2016 to March 2017. The data is collected from parents with a questionnaire aimed to assess the parents' feelings and experiences around the following areas: the announcement structure, the climate of trust, proposal of formalizing personalized support. Results: The average age of children at the time of diagnosis is 11 months, with a male predominance, sex ratio is 1.4. All families had one sick child. Retinoblastoma was bilateral in two cases. The surgical treatment was radical in all cases. 75% felt that the doctor was able to find the right words to announce the disease, and 42% felt he found the right words. At the time of diagnosis, 11 out of 12 families felt that they had received sufficient listening from the healthcare professionals and 75% felt that listening was quite sufficient. All parents report that the doctor who made the announcement spoke to them with care and respect and 92% spoke on the extreme positive score. 66% of families report receiving a personalized care plan. Conclusion: The results of this study will improve the overall care provided to children and integrate the difficulties expressed and felt by parents to the care project.

Published in International Journal of Psychological and Brain Sciences (Volume 4, Issue 3)
DOI 10.11648/j.ijpbs.20190403.12
Page(s) 36-40
Creative Commons

This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.

Copyright

Copyright © The Author(s), 2019. Published by Science Publishing Group

Keywords

Retinoblastoma, Parents, Cancer, Diagnosis Annoucement, Children

References
[1] Doz F, Brisse H, Stoppa-Lyonnet D. Retinoblastoma. Chapitre 16. In: Pinkerton CR, Plowman PN, Pieters R (eds). Paediatr Oncol 2004; 323–38.
[2] Doz F. Retinoblastoma: a review. Arch Pediatr 2006; 13: 1329–37.
[3] Livret d’information sur le rétinoblastome, version actualisée 2014 (www.retinostop.org).
[4] El Kettani A, Aderdour S, Daghouj G, Knari S, Zaghloul K, Zafad S et al. Rétinoblastome: Résultats préliminaires du protocole national de prise en charge au CHU de Casablanca. J fr ophtalmol 2014; 37 (2): 115-124.
[5] Ek U. Emotional reactions in parents and children after diagnosis and treatment of a malignant tumor in the eye. Child Care Health Dev 2000; 26 (5): 415–28.
[6] Delage M, Boisserolles V, Savignioni A, Desjardins L, Aerts I, Gauthier-Villars M et al. Comment les parents perçoivent-ils la prise en charge de leur enfant atteint de rétinoblastome ? Rev Oncol Hematol Pediatr 2014; 2: 180–7.
[7] Razavi D, Delvaux N. Communication skills and psychological training in oncology. Eur J Cancer 1997; 33 (S6): S15–21.
[8] Delvaux N, Merckaert I, Marchal S, Libert Y, Conradt S, Boniver J et al. Physicians’ communication with a cancer patient and a relative: A randomized study assessing the efficacy of consolidation workshops. Cancer 2005; 103 (11): 2397-411.
[9] Bruce M, Gumley D, Isham L, Fearon P, Phipps K. Posttraumatic stress symptoms in childhood brain tumour survivors and their parents. Child: Care, Health and Development 2011; 37 (2): 244-251.
[10] Bennett E, English MW, Rennoldson M, Starza-Smith A. Predicting parenting stress in caregivers of children with brain tumours. Psychooncology 2013; 22 (3): 629-636.
[11] Etude sur l’annonce du diagnostic de cancer et le ressenti des malades en 2011. INCa Mai 2012.
[12] Delage M, Alajane, F, Pacquement H, Seigneur E. Rétinoblastome de l’enfant: étude qualitative de l’expérience subjective des parents et de leur compréhension de la consultation d’oncogénétique à la recherche d’une prédisposition génétique. Psycho-Oncol 2015; 9: 160–64.
[13] Albarracin D, Jouffre S. L’annonce de mauvaises nouvelles: émotions et feed-back dans la formation des médecins. Psycho- Oncol 2014; 8: 177-82.
[14] Romano H. L’annonce d’un diagnostic grave. Rev med interne 2010; 31 (9): 626-30.
[15] Daydé MC. La relation d’aide en soins infirmiers, aspects réglementaires et conceptuels. Soins 2008; 53 (731): 35-8.
[16] Stadelmaier N, Lombard I, Duguey-Cachet O, Hugues J, Carton O, Cosnefroy O et al. Le dispositif d’annonce en cancérologie: quel outil d’orientation vers la consultation psychologique? Psycho-Oncol 2009; 3: 176-183.
[17] Rannou S, Guirimand N, Cartran L, Tresvaux du Fraval F, Sahbatou Y, Lagrange JL et al. Le vécu de l’annonce d’un cancer à l’ère du dispositif d’annonce (2011). Psycho-Oncol 2011; 5: 227-234.
[18] Clément-Hryniewicz N, Paillaud E. Quand le mot cancer fait trauma Réflexions autour de l’annonce diagnostique de cancer. Psycho-Oncol 2008; 2: 44-48.
[19] Vrijmoet-Wiersma CM, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: A review. J Pediatr Psychol 2008; 33 (7): 694-706.
[20] Norberg AL et Green A. Stressors in the daily life of parents after a child’s successful cancer treatment. J Psychosoc Oncol 200; 25 (3): 113-122.
[21] Sheppard L, Eiser C, Kingston J. Mothers’ perceptions of children’s quality of life following early diagnosis and treatment for retinoblastoma. Child Care Health Dev 2005; 31: 137–42.
[22] Meier DE, Back AL, Morrisson RS. The inner life of physicians and care of the Serious ill. JAMA 2001; 286 (23): 3007–14.
[23] Lecompte H. Informer sur les séquelles des cancers pédiatriques: difficultés du médecin et traitement de l’information par le patient. Psycho-Oncol 2009; 3: 217-221.
[24] Fraisse P. Le dispositif d’annonce en cancérologie: entre éthique et pratique. Rev mal respir 2007; 24 (5): 569-74.
[25] Ptacek JT, Fries EA, Eberhardt TL, Ptacek JJ. Breaking bad news to patients: physicians’ perception of the process. Support Care Cancer 1999; 7 (3): 113–20.
Cite This Article
  • APA Style

    Aymen Kachouchi, Nabil Albab, Mohammed Berghalout, Sarah Belghmaidi, Jihane Hakam, et al. (2019). Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences. International Journal of Psychological and Brain Sciences, 4(3), 36-40. https://doi.org/10.11648/j.ijpbs.20190403.12

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    ACS Style

    Aymen Kachouchi; Nabil Albab; Mohammed Berghalout; Sarah Belghmaidi; Jihane Hakam, et al. Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences. Int. J. Psychol. Brain Sci. 2019, 4(3), 36-40. doi: 10.11648/j.ijpbs.20190403.12

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    AMA Style

    Aymen Kachouchi, Nabil Albab, Mohammed Berghalout, Sarah Belghmaidi, Jihane Hakam, et al. Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences. Int J Psychol Brain Sci. 2019;4(3):36-40. doi: 10.11648/j.ijpbs.20190403.12

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  • @article{10.11648/j.ijpbs.20190403.12,
      author = {Aymen Kachouchi and Nabil Albab and Mohammed Berghalout and Sarah Belghmaidi and Jihane Hakam and Imane Adali and Ibtissam Hajji and Fatiha Manoudi and Abdeljalil Moutaouakil and Fatima Asri},
      title = {Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences},
      journal = {International Journal of Psychological and Brain Sciences},
      volume = {4},
      number = {3},
      pages = {36-40},
      doi = {10.11648/j.ijpbs.20190403.12},
      url = {https://doi.org/10.11648/j.ijpbs.20190403.12},
      eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.ijpbs.20190403.12},
      abstract = {Introduction: Retinoblastoma is a cancerous tumor of the retina. It is a rare pathology that affects each year, in France, one child out of 15,000 to 20,000 births. In Morocco, and in a prospective study conducted over 2 years and 3 months in the pediatric ophthalmology department in Casablanca, the annual incidence of retinoblastoma was estimated at 18 cases per year. The diagnosis of cancer, like any other serious illness, provokes an intense feeling of guilt in the child and in his parents. The retinoblastoma diagnosis announcement remains a difficult and delicate moment for caregivers and parents. The purpose of our work is to describe the experience of the parents of a child with retinoblastoma and to assess the degree of satisfaction of these children both for the treatment of their child and for clarity. information transmitted. Material and method: We conducted a descriptive cross-sectional study of the parents of children with retinoblastoma who received care in the ophthalmology department of Mohammed VI CHU Marrakech Morocco, and this over a period of one year from March 2016 to March 2017. The data is collected from parents with a questionnaire aimed to assess the parents' feelings and experiences around the following areas: the announcement structure, the climate of trust, proposal of formalizing personalized support. Results: The average age of children at the time of diagnosis is 11 months, with a male predominance, sex ratio is 1.4. All families had one sick child. Retinoblastoma was bilateral in two cases. The surgical treatment was radical in all cases. 75% felt that the doctor was able to find the right words to announce the disease, and 42% felt he found the right words. At the time of diagnosis, 11 out of 12 families felt that they had received sufficient listening from the healthcare professionals and 75% felt that listening was quite sufficient. All parents report that the doctor who made the announcement spoke to them with care and respect and 92% spoke on the extreme positive score. 66% of families report receiving a personalized care plan. Conclusion: The results of this study will improve the overall care provided to children and integrate the difficulties expressed and felt by parents to the care project.},
     year = {2019}
    }
    

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  • TY  - JOUR
    T1  - Child with Retinoblatoma: Diagnosis Announcement, Difficulties and Parent’s Experiences
    AU  - Aymen Kachouchi
    AU  - Nabil Albab
    AU  - Mohammed Berghalout
    AU  - Sarah Belghmaidi
    AU  - Jihane Hakam
    AU  - Imane Adali
    AU  - Ibtissam Hajji
    AU  - Fatiha Manoudi
    AU  - Abdeljalil Moutaouakil
    AU  - Fatima Asri
    Y1  - 2019/07/09
    PY  - 2019
    N1  - https://doi.org/10.11648/j.ijpbs.20190403.12
    DO  - 10.11648/j.ijpbs.20190403.12
    T2  - International Journal of Psychological and Brain Sciences
    JF  - International Journal of Psychological and Brain Sciences
    JO  - International Journal of Psychological and Brain Sciences
    SP  - 36
    EP  - 40
    PB  - Science Publishing Group
    SN  - 2575-1573
    UR  - https://doi.org/10.11648/j.ijpbs.20190403.12
    AB  - Introduction: Retinoblastoma is a cancerous tumor of the retina. It is a rare pathology that affects each year, in France, one child out of 15,000 to 20,000 births. In Morocco, and in a prospective study conducted over 2 years and 3 months in the pediatric ophthalmology department in Casablanca, the annual incidence of retinoblastoma was estimated at 18 cases per year. The diagnosis of cancer, like any other serious illness, provokes an intense feeling of guilt in the child and in his parents. The retinoblastoma diagnosis announcement remains a difficult and delicate moment for caregivers and parents. The purpose of our work is to describe the experience of the parents of a child with retinoblastoma and to assess the degree of satisfaction of these children both for the treatment of their child and for clarity. information transmitted. Material and method: We conducted a descriptive cross-sectional study of the parents of children with retinoblastoma who received care in the ophthalmology department of Mohammed VI CHU Marrakech Morocco, and this over a period of one year from March 2016 to March 2017. The data is collected from parents with a questionnaire aimed to assess the parents' feelings and experiences around the following areas: the announcement structure, the climate of trust, proposal of formalizing personalized support. Results: The average age of children at the time of diagnosis is 11 months, with a male predominance, sex ratio is 1.4. All families had one sick child. Retinoblastoma was bilateral in two cases. The surgical treatment was radical in all cases. 75% felt that the doctor was able to find the right words to announce the disease, and 42% felt he found the right words. At the time of diagnosis, 11 out of 12 families felt that they had received sufficient listening from the healthcare professionals and 75% felt that listening was quite sufficient. All parents report that the doctor who made the announcement spoke to them with care and respect and 92% spoke on the extreme positive score. 66% of families report receiving a personalized care plan. Conclusion: The results of this study will improve the overall care provided to children and integrate the difficulties expressed and felt by parents to the care project.
    VL  - 4
    IS  - 3
    ER  - 

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Author Information
  • Research Team for Mental Health, Department Of Psychiatry, Faculty of Medicine and Pharmacy, Caddi Ayyad University, Marrakech, Morocco

  • Department of ophthalmology, Mohamed VI University Hospital of Marrakech, Marrakech, Morocco

  • Research Team for Mental Health, Department Of Psychiatry, Faculty of Medicine and Pharmacy, Caddi Ayyad University, Marrakech, Morocco

  • Department of ophthalmology, Mohamed VI University Hospital of Marrakech, Marrakech, Morocco

  • Department of ophthalmology, Mohamed VI University Hospital of Marrakech, Marrakech, Morocco

  • Research Team for Mental Health, Department Of Psychiatry, Faculty of Medicine and Pharmacy, Caddi Ayyad University, Marrakech, Morocco

  • Department of ophthalmology, Mohamed VI University Hospital of Marrakech, Marrakech, Morocco

  • Research Team for Mental Health, Department Of Psychiatry, Faculty of Medicine and Pharmacy, Caddi Ayyad University, Marrakech, Morocco

  • Department of ophthalmology, Mohamed VI University Hospital of Marrakech, Marrakech, Morocco

  • Research Team for Mental Health, Department Of Psychiatry, Faculty of Medicine and Pharmacy, Caddi Ayyad University, Marrakech, Morocco

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