Asian Pacific Journal of Cancer Prevention
- Volume 17 Issue 4
- /
- Pages.1717-1723
- /
- 2016
- /
- 1513-7368(pISSN)
- /
- 1513-7368(eISSN)
DOI QR Code
Parental Experiences with Chemotherapy-Induced Alopecia among Childhood Cancer Patients in Indonesia
- Gunawan, Stefanus (Department of Pediatrics, Dr RD Kandou Hospital) ;
- Broeke, Chloe ten (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
- Ven, Peter van de (Department of Epidemiology and Biostatistics, VU University Medical Center) ;
- Arnoldussen, Marijn (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
- Kaspers, Gertjan (Department of Pediatric Oncology-Hematology, VU University Medical Center) ;
- Mostert, Saskia (Department of Pediatric Oncology-Hematology, VU University Medical Center)
- Published : 2016.06.01
Abstract
Background: This study assessed parental experiences with chemotherapy-induced alopecia among children with cancer treated at an Indonesian academic hospital. Materials and Methods: Fifty parents of childhood cancer patients were interviewed using semi-structured questionnaires. Results: The moment that hair fell out was the moment that parents (84%) had to admit their child had cancer. Alopecia was a traumatizing painful experience (46%). Active strategies to hide alopecia, mainly hats, were used by 66% of children, while 34% never covered their bald head. If money had not been an issue, 40% would use another strategy. Alopecia made children limit outdoor daily activities (78%) and engagement with others (60%). Significantly more children from high-educated (95%) than low-educated (60%) parents received sympathy from other people (P=0.012). Significantly more Christian (29%) than Muslim (0%) families confirmed that alopecia lowered the quality of life (P=0.046). Most parents (82%) had no prior plans about alopecia management, yet for significantly more girls (26%) than boys (0%) such plans existed (P=0.044). Parents received most information about alopecia from other parents (66%). Parents (92%) needed more alopecia education from doctors. Of all school-attending children, 53% were bullied and 47% did not want to attend school due to alopecia. Significantly more high-educated than low-educated families received pity from teachers and pupils (94% vs. 0%, P=0.004), and acceptance by pupils (81% vs. 0%, P=0.021). Conclusions: Alopecia is a severe, far-stretching side-effect of chemotherapy with physical, psychological and social consequences for children and parents. Parents should be better informed about occurrence and impact of alopecia. Extra attention is required to facilitate children's return to school. Healthcare providers should facilitate optimal supportive care through open dialogue and provision of educational m aterials for parents, children and their community.
Keywords
Childhood cancer;alopecia;low-income country;Indonesia
File
References
- Alderfer MA, Long KA, Lown EA, et al (2010). Psychosocial adjustment of siblings of children with cancer: a systematic review. Pychooncol, 19, 789-805.
- Al-Omari O, Wynaden D (2014). The psychosocial experience of adolescents with haematological malignancies in Jordan: an interpretive phenomenological analysis study. Sci World J, 5, 274036.
- Anderzen-Carlsson A, Kihlgren M, Svantesson M, Sorlie V (2010). Parental handling of fear in children with cancer; caring in the best interests of the child. J Pediatr Nurs, 25, 317-26. https://doi.org/10.1016/j.pedn.2008.10.004
- Benedetti GMS, Garanhani ML, Sales CA (2014). The treatment of childhood cancer: unveiling the experience of parents. Rev Latino-Am Enfermagem, 22, 425-31. https://doi.org/10.1590/0104-1169.3264.2433
- Biro Pusat Statistik (BPS). Statistical year book of Indonesia 2014. Available at: http://www.bps.go.id/hasil_publikasi/ SI_2014/index3.php?pub=StatistikIndonesia2014
- Can G, Demir M, Erol O, Aydiner A (2013). A comparison of men and women’s experiences of chemotherapy induced alopecia. Eur J Oncol Nurs, 17, 255-60.
- Choi EK, Kim IR, Chang O, et al (2014). Impact of chemotherapyinduced alopecia distress on body image, psychosocial wellbeing, and depression in breast cancer patients. Psychooncol, 23, 1103-10. https://doi.org/10.1002/pon.3531
- Deniffe S, Gooney M (2011). A meta-synthesis of women’s symptoms experience and breast cancer. Eur J Cancer Care, 20, 424-35. https://doi.org/10.1111/j.1365-2354.2010.01223.x
- Dupuis LL, Milne-Wren C, Cassidy M, et al (2010). Symptom assessment in children receiving cancer therapy: the parents’ perspective. Support Care Cancer, 18, 281-99. https://doi.org/10.1007/s00520-009-0651-1
- Erol O, Can G, Aydmer A (2012). Effects of alopecia on body image and quality of life of Turkish cancer women with or without headscarf. Support Care Cancer, 20, 2349-56. https://doi.org/10.1007/s00520-011-1338-y
- Gunawan S, Wolters E, van Dongen J, et al (2014). Parents’ and health-care providers’ perspectives on side-effects of childhood cancer treatment in Indonesia. Asian Pac J Cancer Prev, 15, 3593-9 https://doi.org/10.7314/APJCP.2014.15.8.3593
- Hagerdoorn M, Kreicbergs U, Appel C (2011). Coping with cancer: the perspective of patients’ relatives. Acta Oncol, 50, 205-11. https://doi.org/10.3109/0284186X.2010.536165
- Heden L, Poder U, von Essen L, Ljungman G (2013). Parents’ perception of their child symptom burden during and after cancer treatment. J Pain Symptom Manage, 46, 366-75. https://doi.org/10.1016/j.jpainsymman.2012.09.012
- Howard SC, Metzger ML, Wilimas JA, et al (2008). Childhood cancer epidemiology in low-income countries. Cancer, 112, 461-72. https://doi.org/10.1002/cncr.23205
- Jayde V, Boughton M, Blomfield P (2013). The experience of chemotherapy-induced alopecia for Australian women with ovarian cancer. Eur J Cancer Care, 22, 503-12. https://doi.org/10.1111/ecc.12056
- Kaplan LM, Kaal KJ, Bradley L, Alderfer MA (2013). Cancerrelated traumatic stress reactions in siblings of children with cancer. Fam Syst Health, 31, 205-17. https://doi.org/10.1037/a0032550
- Kim IR, Cho J, Choi EK, et al (2012). Perception, attitudes, preparedness and experience of chemotherapy-induced alopecia among breast cancer patients: a qualitative study. Asian Pac J Cancer Prev, 13, 1383-88. https://doi.org/10.7314/APJCP.2012.13.4.1383
- Lee MY, Mu PF, Tsay SF, et al (2012). Body image of children and adolescents with cancer: a metasynthesis on qualitative research findings. Nurs Health Sci, 14, 381-90. https://doi.org/10.1111/j.1442-2018.2012.00695.x
- Magnis-Suseno F. Two basic principles of Javanese social life. Morality as knowledge of life (1997). In: Javanese ethics and world view: the Javanese idea of the good life. Jakarta: PT Gramedia; 42-83, 193-219.
- Mostert S, Gunawan S, Wolters E, et al (2012). Socio-economic status plays important role in childhood cancer treatment outcome in Indonesia. Asian Pac J Cancer Prev, 13, 6491-96. https://doi.org/10.7314/APJCP.2012.13.12.6491
- Mulders M, Vingerhoets A, Breed W (2008). The impact of cancer and chemotherapy: perceptual similarities and differences between cancer patiens, nurses and physicians. Eur J Oncol Nurs, 12, 97-102. https://doi.org/10.1016/j.ejon.2007.10.002
- Ramirez LY, Huestis SE, Yap TY, et al (2009). Potential chemotherapy side effects; what do oncologists tell parents? Pediatr Blood Cancer, 52, 497-502. https://doi.org/10.1002/pbc.21835
- Sadruddin MM, Hameed-ur-Rehman M (2013). Understanding the perception of children battling cancer about self and others through drawing. South Asia J Cancer, 2, 113-18. https://doi.org/10.4103/2278-330X.114100
- Sheng-Yu F, Eiser C (2009). Body image of children and adolescents with cancer: A systematic review. Body Image, 6, 247-56. https://doi.org/10.1016/j.bodyim.2009.06.002
- Sitaresmi MN, Mostert S, Purwanto I, et al (2009). Chemotherapyrelated side effects in childhood acute lymphoblastic leukemia in Indonesia: parental perceptions. J Pediatr Oncol Nurs, 26, 198-207 https://doi.org/10.1177/1043454209340315
- Trueb R.M (2010). Chemotherapy-induced alopecia. Curr Opin Support Palliat Care, 4, 281-84. https://doi.org/10.1097/SPC.0b013e3283409280
- Williamson H, Harcourt D, Halliwell E, Frith H, Wallace M (2010). Adolescents’ and parents’ experiences of managing psychosocial impact of appearance change during cancer treatment. J Pediatr Oncol Nurs, 27, 168-75. https://doi.org/10.1177/1043454209357923
- Zannini L, Verderame F, Cucchiara G, et al (2012). 'My wig has been my journey’s companion': perceived effects on aesthetic care programme for Italian women suffering from chemotherapy induced-alopecia. Eur J Cancer Care, 21, 650-60. https://doi.org/10.1111/j.1365-2354.2012.01337.x