Skip to main content
SpringerLink
Log in

Supporting Caregivers of Patients with Childhood Malignancies

  • Chapter
  • First Online:
Informal Caregivers: From Hidden Heroes to Integral Part of Care

  • 397 Accesses

Abstract

Parenting for a child with malignancy can be demanding. The shift from parenting to caregiving for a child with cancer comes with emotional, financial and social burden that accumulates. Caregivers can often be diagnosed with Post-traumatic Stress Syndrome—PTSS, depression and anxiety. The needs of caregivers of children with malignancies differ according to the diagnosis, the disease stage, the family structure and their cultural and religious beliefs. Supporting these needs is essential for ensuring the continuity of the child’s therapy. Support methods have been described extensively in the literature. Healthcare providers in the field of paediatric cancer should be able to recognise the needs of caregivers and provide or guide them towards adequate and proper support. Supporting caregivers’ needs has an immediate impact in the child’s treatment trajectory and outcome.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 59.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 79.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  1. Bhakta N, Force LM, Allemani C et al (2019) Childhood cancer burden: a review of global estimates. Lancet Oncol 20:e42–e53. https://doi.org/10.1016/S1470-2045(18)30761-7

    Article  Google Scholar 

  2. Force LM, Abdollahpour I, Advani SM et al (2019) The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017. Lancet Oncol 20:1211–1225. https://doi.org/10.1016/S1470-2045(19)30339-0

    Article  Google Scholar 

  3. Johnston WT, Erdmann F, Newton R et al (2021) Childhood cancer: estimating regional and global incidence. Cancer Epidemiol 71:101662. https://doi.org/10.1016/J.CANEP.2019.101662

    Article  CAS  Google Scholar 

  4. Robison LL, Hudson MM (2013) Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14:1 14:61–70. https://doi.org/10.1038/nrc3634

  5. Tan R, Koh S, Wong ME et al (2020) Caregiver stress, coping strategies, and support needs of mothers caring for their children who are undergoing active cancer treatments. Clin Nurs Res 29:460–468. https://doi.org/10.1177/1054773819888099

    Article  Google Scholar 

  6. Fletcher PC (2010) My child has cancer: the costs of mothers’ experiences of having a child with pediatric cancer. Issues Comprehensive Pediatric Nurs 33:164–184. https://doi.org/10.3109/01460862.2010.498698

    Article  Google Scholar 

  7. Jantien Vrijmoet-Wiersma CM, van Klink JMM, Kolk AM et al (2008) Assessment of parental psychological stress in pediatric cancer: a review. J Pediatric Psychol 33:694–706. https://doi.org/10.1093/JPEPSY/JSN007

    Article  Google Scholar 

  8. Kazak AE, Baxt C (2007) Families of infants and young children with cancer: a post-traumatic stress framework. Pediatr Blood Cancer 49:1109–1113. https://doi.org/10.1002/pbc.21345

    Article  Google Scholar 

  9. Boman KK, Viksten J, Kogner P, Samuelsson U (2004) Serious illness in childhood: the different threats of cancer and diabetes from a parent perspective. J Pediatrics 145:373–379. https://doi.org/10.1016/j.jpeds.2004.05.043

    Article  Google Scholar 

  10. McCaffrey CN (2006) Major stressors and their effects on the well-being of children with cancer. J Pediatric Nurs 21:59–66. https://doi.org/10.1016/J.PEDN.2005.07.003

    Article  Google Scholar 

  11. Granek L, Rosenberg-Yunger ZRS, Dix D et al (2014) Caregiving, single parents and cumulative stresses when caring for a child with cancer. Child: Care Health Dev 40:184–194. https://doi.org/10.1111/CCH.12008

    Article  CAS  Google Scholar 

  12. Lindahl Norberg A, Mellgren K, Winiarski J, Forinder U (2014) Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation. Pediatric Transplant 18:302–309. https://doi.org/10.1111/petr.12228

    Article  Google Scholar 

  13. Patterson JM, Holm KE, Gurney JG (2004) The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology 13:390–407. https://doi.org/10.1002/pon.761

    Article  Google Scholar 

  14. McGrath P, Paton MA, Huff N (2005) Beginning treatment for pediatric acute myeloid leukemia: the family connection. Issues Comprehensive Pediatric Nurs 28:97–114. https://doi.org/10.1080/01460860590950881

    Article  Google Scholar 

  15. Klassen AF, Klaassen R, Dix D et al (2008) Impact of caring for a child with cancer on parents’ health-related quality of life. J Clin Oncol 26:5884–5889. https://doi.org/10.1200/JCO.2007.15.2835

    Article  Google Scholar 

  16. Shaffer KM, Chow PI, Cohn WF et al (2018) Informal caregivers’ use of internet-based health resources: an analysis of the health information national trends survey. JMIR Aging 1:e11051. https://doi.org/10.2196/11051

    Article  Google Scholar 

  17. Spitzer C, Barnow S, Völzke H et al (2009) Trauma, posttraumatic stress disorder, and physical illness: findings from the general population. Psychosomatic Med 71:1012–1017. https://doi.org/10.1097/PSY.0B013E3181BC76B5

    Article  Google Scholar 

  18. Breslau N (2002) Epidemiologic studies of trauma, posttraumatic stress disorder, and other psychiatric disorders. Can J Psychiatry 47:923–929. https://doi.org/10.1177/070674370204701003

    Article  Google Scholar 

  19. James K, Keegan-Wells D, Hinds PS et al (2002) The care of my child with cancer: parents’ perceptions of caregiving demands. J Pediatric Oncol Nurs 19:218–228. https://doi.org/10.1177/104345420201900606

    Article  Google Scholar 

  20. Pinquart M (2018) Parenting stress in caregivers of children with chronic physical condition—a meta-analysis. Stress Health 34:197–207. https://doi.org/10.1002/SMI.2780

    Article  Google Scholar 

  21. Salvador Á, Crespo C, Martins AR et al (2015) Parents’ perceptions about their child’s illness in pediatric cancer: links with caregiving burden and quality of life. J Child Family Stud 24:1129–1140. https://doi.org/10.1007/s10826-014-9921-8

    Article  Google Scholar 

  22. Rafii F, Oskouie F, Shoghi M (2014) Caring for a child with cancer: impact on mother’s health. Asian Pac J Cancer Prev 15:1731–1738. https://doi.org/10.7314/APJCP.2014.15.4.1731

    Article  Google Scholar 

  23. Young B, Dixon-Woods M, Heney D (2002) Identity and role in parenting a child with cancer. Pediatric Rehabilitation 5:209–214. https://doi.org/10.1080/1363849021000046184

    Article  Google Scholar 

  24. Norberg AL, Boman KK (2009) Parent distress in childhood cancer: a comparative evaluation of posttraumatic stress symptoms, depression and anxiety. 47:267–274. https://doi.org/10.1080/02841860701558773

  25. Pöder U, Ljungman G, von Essen L (2008) Posttraumatic stress disorder among parents of children on cancer treatment: a longitudinal study. Psycho-Oncology 17:430–437. https://doi.org/10.1002/PON.1263

    Article  Google Scholar 

  26. Stuber ML, Kazak AE, Meeske K, Barakat L (1998) Is posttraumatic stress a viable model for understanding responses to childhood cancer? Child Adolescent Psychiatric Clin North Am 7:169–182. https://doi.org/10.1016/S1056-4993(18)30266-9

    Article  CAS  Google Scholar 

  27. Barakat LP, Kazak AE, Meadows AT et al (1997) Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatric Psychol 22:843–859. https://doi.org/10.1093/JPEPSY/22.6.843

    Article  CAS  Google Scholar 

  28. Adelman RD, Tmanova LL, Delgado D et al (2014) Caregiver burden: a clinical review. JAMA 311:1052–1059. https://doi.org/10.1001/JAMA.2014.304

    Article  CAS  Google Scholar 

  29. Rubira EA, Santo E, Aparecida Munhoz Gaíva M, et al (2011) Taking care of children with cancer: evaluation of the caregivers’ burden and quality of life Elizete Aparecida Rubira do Espírito Santo 1

    Google Scholar 

  30. Hansen T, Slagsvold B (2015) Feeling the squeeze? The effects of combining work and informal caregiving on psychological well-being. Eur J Ageing 12:51–60. https://doi.org/10.1007/S10433-014-0315-Y/FIGURES/1

    Article  Google Scholar 

  31. Vitaliano PP, Strachan E, Dansie E et al (2014) Does caregiving cause psychological distress? The case for familial and genetic vulnerabilities in female twins. Ann Behav Med 47:198–207. https://doi.org/10.1007/S12160-013-9538-Y

    Article  Google Scholar 

  32. Prince M, Brodaty H, Uwakwe R et al (2012) Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. Int J Geriatr Psychiatry 27:670–682. https://doi.org/10.1002/gps.2727

    Article  Google Scholar 

  33. Caputo J, Pavalko EK, Hardy MA (2016) The long-term effects of caregiving on women’s health and mortality. J Marriage Family 78:1382–1398. https://doi.org/10.1111/JOMF.12332

    Article  Google Scholar 

  34. Wolfe-Christensen C, Mullins LL, Fedele DA et al (2010) The relation of caregiver demand to adjustment outcomes in children with cancer: the moderating role of parenting. Stress. 39:108–124. https://doi.org/10.1080/02739611003679881

    Article  Google Scholar 

  35. Grandón P, Jenaro C, Lemos S (2008) Primary caregivers of schizophrenia outpatients: burden and predictor variables. Psychiatry Res 158:335–343. https://doi.org/10.1016/J.PSYCHRES.2006.12.013

    Article  Google Scholar 

  36. Joyce J. Fitzpatrick and Geraldine McCarthy (2016) Nursing concept analysis: applications to research and practice, 1st edn. Springer, New York

    Google Scholar 

  37. Llanque S, Savage L, Rosenburg N, Caserta M (2014) Concept analysis: Alzheimer’s caregiver stress an independent voice for nursing

    Google Scholar 

  38. Sisk RJ (2000) Caregiver burden and health promotion. Int J Nurs Stud 37:37–43. https://doi.org/10.1016/S0020-7489(99)00053-X

    Article  CAS  Google Scholar 

  39. Roy C (2011) Research based on the Roy adaptation model: Last 25 years. Nurs Sci Q 24:312–320. https://doi.org/10.1177/0894318411419218

    Article  Google Scholar 

  40. Herdman TH, Kamitsuru S, North American Nursing Diagnosis Association NANDA International, Inc. Nursing diagnoses: definitions & classification 2018-2020. 473

    Google Scholar 

  41. Peñarrieta De Córdova MI, Canales R, Krederdt S et al (2016) The relationship of the quality of life and burden of informal caregivers of patients with cancer in Lima, Peru. J Nurs Educ Pract 6. https://doi.org/10.5430/jnep.v6n8p36

  42. Veloso VI, Tripodoro VA (2016) Caregivers burden in palliative care patients: a problem to tackle. Curr Opin Support Palliat Care 10:330–335. https://doi.org/10.1097/SPC.0000000000000239

    Article  Google Scholar 

  43. Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 12:165–176. https://doi.org/10.1177/002076406601200301

    Article  CAS  Google Scholar 

  44. Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20:649–655. https://doi.org/10.1093/GERONT/20.6.649

    Article  CAS  Google Scholar 

  45. Given CW, Given B, Stommel M et al (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15:271–283. https://doi.org/10.1002/NUR.4770150406

    Article  CAS  Google Scholar 

  46. Montgomery RJ, Gonyea JG, Hooyman NR (1985) Caregiving and the experience of subjective and objective burden

    Google Scholar 

  47. Ferrell BR, Mazanec P (2009) Family caregivers. Geriatric Oncol 135–155. https://doi.org/10.1007/978-0-387-89070-8_7

  48. Choi S, Seo JY (2019) Analysis of caregiver burden in palliative care: an integrated review. Nurs Forum 54:280–290. https://doi.org/10.1111/nuf.12328

    Article  Google Scholar 

  49. Liu Z, Heffernan C, Tan J (2020) Caregiver burden: a concept analysis. Int J Nurs Sci 7:438–445. https://doi.org/10.1016/j.ijnss.2020.07.012

    Article  Google Scholar 

  50. Bastawrous M (2013) Caregiver burden—a critical discussion. Int J Nurs Stud 50:431–441. https://doi.org/10.1016/J.IJNURSTU.2012.10.005

    Article  Google Scholar 

  51. Costa-Requena G, Espinosa Val M, Cristòfol R (2015) Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliat Support Care 13:583–589. https://doi.org/10.1017/S1478951513001259

    Article  Google Scholar 

  52. Chou KR (2000) Caregiver burden: a concept analysis. J Pediatric Nurs 15:398–407. https://doi.org/10.1053/JPDN.2000.16709

    Article  CAS  Google Scholar 

  53. al Qadire M, Aloush S, Alkhalaileh M et al (2020) Burden among parents of children with cancer in jordan: prevalence and predictors. Cancer Nurs 43:396–401. https://doi.org/10.1097/NCC.0000000000000724

  54. Given B, Wyatt G, Given C et al (2004) Burden and depression among caregivers of patients with cancer at the end-of-life. Oncol Nurs Forum 31:1105. https://doi.org/10.1188/04.ONF.1105-1117

    Article  Google Scholar 

  55. Oechsle K, Ullrich A, Marx G et al (2020) Prevalence and predictors of distress, anxiety, depression, and quality of life in bereaved family caregivers of patients with advanced cancer. Am J Hospice Palliat Med 37:201–213. https://doi.org/10.1177/1049909119872755

    Article  Google Scholar 

  56. Kohlsdorf M, Luiz Á, Junior C (2012) Psychosocial impact of pediatric cancer on parents: a literature review 1

    Google Scholar 

  57. Brody AC, Simmons LA (2007) Family resiliency during childhood cancer: the father’s perspective. J Pediatric Oncol Nurs 24:152–165. https://doi.org/10.1177/1043454206298844

    Article  Google Scholar 

  58. Rezende G, Gomes CA, Rugno FC et al (2017) Burden on family caregivers of the elderly in oncologic palliative care. Eur Geriatric Med 8:337–341. https://doi.org/10.1016/J.EURGER.2017.06.001

    Article  Google Scholar 

  59. Williams PD, Williams KA, Williams AR (2014) Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives. Comprehens Child Adolescent Nurs 37:39–60. https://doi.org/10.3109/01460862.2013.855843

    Article  Google Scholar 

  60. Harding R, Gao W, Jackson D et al (2015) Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symp Manage 50:445–452. https://doi.org/10.1016/J.JPAINSYMMAN.2015.04.005

    Article  Google Scholar 

  61. Shahi V, Lapid MI, Kung S et al (2014) Do age and quality of life of patients with cancer influence quality of life of the caregiver? J Geriatric Oncol 5:331–336. https://doi.org/10.1016/J.JGO.2014.03.003

    Article  Google Scholar 

  62. Burnette D, Duci V, Dhembo E (2017) Psychological distress, social support, and quality of life among cancer caregivers in Albania. Psycho-Oncology 26:779–786. https://doi.org/10.1002/PON.4081

    Article  Google Scholar 

  63. Chiou CJ, Chang HY, Chen IP, Wang HH (2009) Social support and caregiving circumstances as predictors of caregiver burden in Taiwan. Arch Gerontol Geriatrics 48:419–424. https://doi.org/10.1016/j.archger.2008.04.001

    Article  Google Scholar 

  64. Shiba K, Kondo N, Kondo K (2016) Informal and formal social support and caregiver burden: the AGES caregiver survey. J Epidemiol 26:622–628. https://doi.org/10.2188/JEA.JE20150263

    Article  Google Scholar 

  65. Erker C, Yan K, Zhang L et al (2018) Impact of pediatric cancer on family relationships. Cancer Med 7:1680–1688. https://doi.org/10.1002/cam4.1393

    Article  Google Scholar 

  66. Raina P, O’donnell M, Schwellnus H, et al (2004) Caregiving process and caregiver burden: conceptual models to guide research and practice

    Google Scholar 

  67. Robinson KE, Gerhardt CA, Vannatta K, Noll RB (2007) Parent and family factors associated with child adjustment to pediatric cancer. J Pediatric Psychol 32:400–410. https://doi.org/10.1093/JPEPSY/JSL038

    Article  Google Scholar 

  68. Walker LOAKC (2005) Strategies for theory construction in nursing, 4th edn. Pearson Prentice Hall, Upper Saddle River

    Google Scholar 

  69. Bhattacharjee M, Vairale J, Gawali K, Dalal PM (2012) Factors affecting burden on caregivers of stroke survivors: population-based study in Mumbai (India). Ann Indian Acad Neurol 15:113. https://doi.org/10.4103/0972-2327.94994

    Article  Google Scholar 

  70. Kazak AE, RMT, NN (2009) Families and other systems in pediatric psychology. In: Handbook of pediatric psychology. Guilford, New York

    Google Scholar 

  71. Hussin Z, Othman A, Mohamad N, et al (2011) Factors related to parental well-being in children with cancer. In: International conference on social science and humanity

    Google Scholar 

  72. Kolbrun E, Svavarsdottir EK (2005) Caring for a child with cancer: a longitudinal perspective. J Adv Nurs 50:153–161. https://doi.org/10.1111/J.1365-2648.2005.03374.X

    Article  Google Scholar 

  73. Barakat LP, Alderfer MA, Kazak AE (2006) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatric Psychol 31:413–419. https://doi.org/10.1093/JPEPSY/JSJ058

    Article  Google Scholar 

  74. Affleck G, Allen DA, Tennen H et al (2011) Causal and control cognitions in parents’ coping with chronically ill. Children 3:367–377. https://doi.org/10.1521/JSCP.1985.3.3.367

    Article  Google Scholar 

  75. de Korte-Verhoef MC, Pasman HRW, Schweitzer BP et al (2014) Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs. BMC Palliat Care 13:1–9. https://doi.org/10.1186/1472-684X-13-16/TABLES/5

    Article  Google Scholar 

  76. Bigalke K (2015) Coping, hardiness, and parental stress in parents of children diagnosed with cancer. Dissertations

    Google Scholar 

  77. Joa J, Patterson JM (2002) Integrating family resilience and family stress theory. J Marriage Fam 64:349–360. https://doi.org/10.1111/J.1741-3737.2002.00349.X

  78. Fernanda D, Alves S, de Brito GE, Kurashima AY (2013) Stress related to care: the impact of childhood cancer on the lives of parents 1. Rev Latino-Am Enfermagem 21:356–362

    Article  Google Scholar 

  79. Klassen AF, Raina P, McIntosh C et al (2011) Parents of children with cancer: which factors explain differences in health-related quality of life. Int J Cancer 129:1190–1198. https://doi.org/10.1002/ijc.25737

    Article  CAS  Google Scholar 

  80. Miller GE, Cohen S, Ritchey AK (2002) Chronic psychological stress and the regulation of pro-inflammatory cytokines: a glucocorticoid-resistance model. Health Psychol 21:531–541. https://doi.org/10.1037/0278-6133.21.6.531

    Article  Google Scholar 

  81. Ghufran M, Andrades M, Nanji K (2014) Frequency and severity of depression among mothers of children with cancer: results from a teaching hospital in Karachi, Pakistan. Br J Med Pract 7:701

    Google Scholar 

  82. Ljungman L, Boger M, Ander M, et al (2016) Impressions that last: particularly negative and positive experiences reported by parents five years after the end of a child’s successful cancer treatment or death. https://doi.org/10.1371/journal.pone.0157076

  83. Schepers SA, Sint Nicolaas SM, Maurice-Stam H et al (2018) Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis. Cancer 124:381–390. https://doi.org/10.1002/CNCR.31023

    Article  CAS  Google Scholar 

  84. Kazak AE, Boeving CA, Alderfer MA et al (2005) Posttraumatic stress symptoms during treatment in parents of children with cancer. J Clin Oncol 23:7405–7410. https://doi.org/10.1200/JCO.2005.09.110

    Article  Google Scholar 

  85. Kazak AE, Alderfer M, Rourke MT et al (2004) Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Pediatric Psychol 29:211–219. https://doi.org/10.1093/JPEPSY/JSH022

    Article  Google Scholar 

  86. Mohammadi F, Rakhshan M, Houshangian M, Kyle H (2020) Evaluation of psychometric properties of the caregiver burden inventory in parents of Iranian children suffering from cancer. Nurs Midwifery Stud 9:102–109. https://doi.org/10.4103/nms.nms_22_19

    Article  Google Scholar 

  87. Roser K, Erdmann F, Michel G et al (2019) The impact of childhood cancer on parents’ socio-economic situation-a systematic review. Psycho-oncology 28:1207–1226. https://doi.org/10.1002/PON.5088

    Article  Google Scholar 

  88. Santacroce SJ, Tan KR, Killela MK (2018) A systematic scoping review of the recent literature (∼2011-2017) about the costs of illness to parents of children diagnosed with cancer. Eur J Oncol Nurs 35:22–32. https://doi.org/10.1016/J.EJON.2018.04.004

    Article  Google Scholar 

  89. Kish AM, Newcombe PA, Haslam DM (2018) Working and caring for a child with chronic illness: a review of current literature. Child: Care Health Dev 44:343–354. https://doi.org/10.1111/CCH.12546

    Article  CAS  Google Scholar 

  90. Borrescio-Higa F, Valdés N (2022) The psychosocial burden of families with childhood blood cancer. Int J Environ Res Public Health 19. https://doi.org/10.3390/IJERPH19010599

  91. Pagano E, Baldi I, Mosso ML et al (2014) The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment. Pediatric Blood Cancer 61:1088–1093. https://doi.org/10.1002/PBC.24904

    Article  Google Scholar 

  92. Frankham C, Richardson T, Maguire N (2020) Psychological factors associated with financial hardship and mental health: a systematic review. Clin Psychol Rev 77. https://doi.org/10.1016/J.CPR.2020.101832

  93. Creswell PD, Wisk LE, Litzelman K et al (2014) Parental depressive symptoms and childhood cancer: the importance of financial difficulties. Support Care Cancer 22:503–511. https://doi.org/10.1007/S00520-013-2003-4

    Article  Google Scholar 

  94. Keegan Wells D, Kelly James C, Janet Stewart RL, et al (2002) The care of my child with cancer: a new instrument to measure caregiving demand in parents of children with cancer. https://doi.org/10.1053/jpdn.2002.124114

  95. Essue BM, Iragorri N, Fitzgerald N, de Oliveira C (2020) The psychosocial cost burden of cancer: a systematic literature review. Psycho-Oncology 29:1746–1760

    Article  Google Scholar 

  96. Abrams HR, Leeds HS, Russell H, Hellsten MB (2019) Factors influencing family burden in pediatric hematology/oncology encounters. J Patient-Centered Res Rev 6:243–251. https://doi.org/10.17294/2330-0698.1710

    Article  Google Scholar 

  97. Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS (2015) Family caregivers’ burden: a hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer 52:146. https://doi.org/10.4103/0019-509X.175584

    Article  CAS  Google Scholar 

  98. Katz LF, Fladeboe K, Lavi I et al (2018) Trajectories of marital, parent-child, and sibling conflict during pediatric cancer treatment. Health Psychol 37:736–745. https://doi.org/10.1037/HEA0000620

    Article  Google Scholar 

  99. Firoozi M, Besharat MA, Rahimian Boogar E (2013) Emotional regulation and adjustment to childhood cancer: role of the biological, psychological and social regulators on pediatric oncology adjustment 6

    Google Scholar 

  100. Jurbergs N, Long A, Ticona L, Phipps S (2009) Symptoms of posttraumatic stress in parents of children with cancer: are they elevated relative to parents of healthy children? J Pediatric Psychol 34:4–13. https://doi.org/10.1093/jpepsy/jsm119

    Article  Google Scholar 

  101. Sahler OJZ, Dolgin MJ, Phipps S et al (2013) Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: results of a multisite randomized clinical trial. J Clin Oncol 31:1329–1335. https://doi.org/10.1200/JCO.2011.39.1870

    Article  Google Scholar 

  102. Compas BE, Bemis H, Gerhardt CA et al (2015) Mothers and fathers coping with their children’s cancer: individual and interpersonal processes. Health Psychol 34:783–793. https://doi.org/10.1037/HEA0000202

    Article  Google Scholar 

  103. Wakefield CE, McLoone J, Goodenough B et al (2010) The psychosocial impact of completing childhood cancer treatment: a systematic review of the literature. J Pediatric Psychol 35:262–274. https://doi.org/10.1093/JPEPSY/JSP056

    Article  Google Scholar 

  104. Kaushal T, Satapathy S, Chadda RK et al (2019) Hospital based psychosocial support program for children with ALL and their families: a comprehensive triad’s perspective. Indian J Pediatrics 86:118–125. https://doi.org/10.1007/s12098-018-2679-z

    Article  Google Scholar 

  105. Biggs A, Brough P, Drummond S (2017) Lazarus and Folkman’s psychological stress and coping theory. Handb Stress Health 349–364. https://doi.org/10.1002/9781118993811.CH21

  106. Young B, Dixon-Woods M, Findlay M, Heney D (2002) Parenting in a crisis: conceptualising mothers of children with cancer. Soc Sci Med 55:1835–1847. https://doi.org/10.1016/S0277-9536(01)00318-5

    Article  Google Scholar 

  107. Jones BL (2012) The challenge of quality care for family caregivers in pediatric cancer care. Semin Oncol Nurs 28:213–220. https://doi.org/10.1016/j.soncn.2012.09.003

    Article  Google Scholar 

  108. Lewandowska A (2021) Influence of a child’s cancer on the functioning of their family. Children 8. https://doi.org/10.3390/children8070592

  109. Park M, Suh EE, Yu SY (2021) Uncertainty and nursing needs of parents with pediatric cancer patients in different treatment phases: a cross-sectional study. Int J Environ Res Public Health 18. https://doi.org/10.3390/ijerph18084253

  110. Kearney JA, Salley CG, Muriel AC (2015) Standards of psychosocial care for parents of children with cancer. Pediatric Blood Cancer 62:632–683. https://doi.org/10.1002/pbc

    Article  Google Scholar 

  111. Rao VN, Anantharaman Rajeshwari R, Rajagopal R et al (2021) Inception of a pediatric cancer caregiver support group guided by parental needs. Cancer Rep 1–6. https://doi.org/10.1002/cnr2.1469

  112. López J, Velasco C, Noriega C (2021) The role of acceptance in parents whose child suffers from cancer. Eur J Cancer Care 30. https://doi.org/10.1111/ecc.13406

  113. Sultan S, Leclair T, Rondeau et al (2016) A systematic review on factors and consequences of parental distress as related to childhood cancer. Eur J Cancer Care 25:616–637. https://doi.org/10.1111/ECC.12361

    Article  CAS  Google Scholar 

  114. Mueller EL, Cochrane AR, Moore CM et al (2020) Assessing needs and experiences of preparing for medical emergencies among children with cancer and their caregivers. J Pediatric Hematol/Oncol 42:e723–e729. https://doi.org/10.1097/MPH.0000000000001826

    Article  Google Scholar 

  115. Mueller EL, Cochrane AR, Lynch DO et al (2019) Identifying patient-centered outcomes for children with cancer and their caregivers when they seek care in the emergency department. Pediatric Blood Cancer 66:e27903. https://doi.org/10.1002/pbc.27903

    Article  Google Scholar 

  116. Ångström-Brännström C, Norberg A, Strandberg G et al (2010) Parents’ experiences of what comforts them when their child is suffering from cancer. J Pediatric Oncol Nurs 27:266–275. https://doi.org/10.1177/1043454210364623

    Article  Google Scholar 

  117. Gage-Bouchard EA, Devine KA, Heckler CE (2013) The relationship between socio-demographic characteristics, family environment, and caregiver coping in families of children with cancer. J Clin Psychol Med Settings 20:478–487. https://doi.org/10.1007/s10880-013-9362-3

    Article  Google Scholar 

  118. Nagelhout ES, Linder LA, Austin T et al (2018) Social media use among parents and caregivers of children with cancer. J Pediatric Oncol Nurs 35:399–405. https://doi.org/10.1177/1043454218795091

    Article  Google Scholar 

  119. Gage-Bouchard EA, LaValley S, Warunek M et al (2018) Is cancer information exchanged on social media scientifically accurate? J Cancer Educ 33:1328–1332. https://doi.org/10.1007/S13187-017-1254-Z/TABLES/3

    Article  Google Scholar 

  120. Weaver AJ, Flannelly KJ (2004) The role of religion/spirituality for cancer patients and their caregivers. South Med J 97:1210–1214

    Article  Google Scholar 

  121. Goncąlves JPB, Lucchetti G, Menezes PR, Vallada H (2015) Religious and spiritual interventions in mental health care: a systematic review and meta-analysis of randomized controlled clinical trials. Psychol Med 45:2937–2949. https://doi.org/10.1017/S0033291715001166

    Article  Google Scholar 

  122. Abdoljabbari M, Sheikhzakaryaee N, Atashzadeh-Shoorideh F (2018) Taking refuge in spirituality, a main strategy of parents of children with cancer: a qualitative study. Asian Pac J Cancer Prev 19:2575–2580. https://doi.org/10.22034/APJCP.2018.19.9.2575

    Article  Google Scholar 

  123. Kelly JA, May CS, Maurer SH (2016) Assessment of the spiritual needs of primary caregivers of children with life-limiting illnesses is valuable yet inconsistently performed in the hospital. 19:763–766. https://home.liebertpub.com/jpm. https://doi.org/10.1089/JPM.2015.0509

  124. Rosenberg-Yunger ZRS, Granek L, Sung L et al (2013) Single-parent caregivers of children with cancer: factors assisting with caregiving strains. J Pediatric Oncol Nurs 30:45–55. https://doi.org/10.1177/1043454212471727

    Article  Google Scholar 

  125. Wiener L, Viola A, Kearney J et al (2016) Impact of caregiving for a child with cancer on parental health behaviors, relationship quality, and spiritual faith: do lone parents fare worse? J Pediatric Oncol Nurs 33:378–386. https://doi.org/10.1177/1043454215616610

    Article  Google Scholar 

  126. Zamora ER, Kaul S, Kirchhoff AC et al (2016) The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer. Pediatric Blood Cancer 63:2173–2180. https://doi.org/10.1002/PBC.26150

    Article  Google Scholar 

  127. Klassen AF, Gulati S, Watt L et al (2012) Immigrant to Canada, newcomer to childhood cancer: a qualitative study of challenges faced by immigrant parents. Psycho-Oncology 21:558–562. https://doi.org/10.1002/pon.1963

    Article  Google Scholar 

  128. Gulati S, Watt L, Shaw N et al (2012) Communication and language challenges experienced by Chinese and South Asian immigrant parents of children with cancer in Canada: implications for health services delivery. Pediatric Blood Cancer 58:572–578. https://doi.org/10.1002/pbc.23054

    Article  Google Scholar 

  129. Chino K, Sasaki Y, Miyagawa N et al (2019) Pediatric cancer care can be complicated by language barriers: a case involving parents with limited Japanese proficiency. Pediatric Blood Cancer 66. https://doi.org/10.1002/PBC.27563

  130. Banerjee AT, Watt L, Gulati S et al (2011) Cultural beliefs and coping strategies related to childhood cancer: the perceptions of South Asian immigrant parents in Canada. J Pediatric Oncol Nurs 28:169–178. https://doi.org/10.1177/1043454211408106

    Article  Google Scholar 

  131. Liang HF (2002) Understanding culture care practices of caregivers of children with cancer in Taiwan. J Pediatric Oncol Nurs 19:205–217. https://doi.org/10.1177/104345420201900605

    Article  Google Scholar 

  132. Darlington ASE, Morgan JE, Wagland R et al (2021) COVID-19 and children with cancer: parents’ experiences, anxieties and support needs. Pediatric Blood Cancer 68. https://doi.org/10.1002/pbc.28790

  133. Wimberly CE, Towry L, Caudill C et al (2021) Impacts of COVID-19 on caregivers of childhood cancer survivors. Pediatric Blood Cancer 68. https://doi.org/10.1002/pbc.28943

  134. Parambil BC, Goswami S, Moulik NR, et al (2021) Psychological distress in primary caregivers of children with cancer during COVID-19 pandemic-A single tertiary care center experience. Psycho-oncology pon.5793. https://doi.org/10.1002/pon.5793

  135. Zuleta V, Berliner J, Rossell N, Zubieta M (2021) Securing continuation of treatment for children with cancer in times of social unrest and pandemic. Cancer Rep 1–6. https://doi.org/10.1002/cnr2.1430

  136. Quast LF, Williamson Lewis R, Lee JL et al (2021) Psychosocial functioning among caregivers of childhood cancer survivors following treatment completion. J Pediatric Psychol 46:1238–1248. https://doi.org/10.1093/jpepsy/jsab061

    Article  Google Scholar 

  137. Lemos MS, Lima L, Silva C, Fontoura S (2020) Disease-related parenting stress in the post-treatment phase of pediatric cancer. Comprehens Child Adolescent Nurs 43:65–79. https://doi.org/10.1080/24694193.2019.1570393

    Article  Google Scholar 

  138. Karst JS, Hoag JA, Chan SF et al (2018) Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families. Pediatric Blood Cancer 65:e27109. https://doi.org/10.1002/PBC.27109

    Article  Google Scholar 

  139. Hobbie WL, Ogle SK, Reilly M et al (2010) Identifying the educational needs of parents at the completion of their child’s cancer therapy. J Pediatric Oncol Nurs 27:190–195. https://doi.org/10.1177/1043454209360778

    Article  Google Scholar 

  140. Bany Hamdan A, Ballourah W, Elghazaly A et al (2020) The effect of video-assisted education prior intrathecal chemotherapy on anxiety and knowledge enhancement. J Cancer Educ 1–6. https://doi.org/10.1007/s13187-020-01787-1

  141. de la Maza V, Manriquez M, Castro M et al (2020) Impact of a structured educational programme for caregivers of children with cancer on parental knowledge of the disease and paediatric clinical outcomes during the first year of treatment. Eur J Cancer Care 29:e13294. https://doi.org/10.1111/ECC.13294

    Article  Google Scholar 

  142. Yilmaz MC, Ozsoy SA (2010) Effectiveness of a discharge-planning program and home visits for meeting the physical care needs of children with cancer. Support Care Cancer 18:243–253. https://doi.org/10.1007/S00520-009-0650-2

    Article  Google Scholar 

  143. Rodgers C, Bertini V, Conway MA et al (2018) A standardized education checklist for parents of children newly diagnosed with cancer: a report from the children’s oncology group. J Pediatric Oncol Nurs 35:235. https://doi.org/10.1177/1043454218764889

    Article  Google Scholar 

  144. Jibb LA, Chartrand J, Masama T, Johnston DL (2021) Home-based pediatric cancer care: perspectives and improvement suggestions from children, family caregivers, and clinicians. JCO Oncol Pract 17:e827–e839. https://doi.org/10.1200/op.20.00958

    Article  Google Scholar 

  145. Markward MJ, Benner K, Freese R (2013) Perspectives of parents on making decisions about the care and treatment of a child with cancer: a review of literature. Families Syst Health 31:406–413. https://doi.org/10.1037/a0034440

    Article  Google Scholar 

  146. Pierce L, Hocking MC, Schwartz LA et al (2017) Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment. Psycho-Oncology 26:1555–1561. https://doi.org/10.1002/pon.4171

    Article  Google Scholar 

  147. Liu YM, Wen YC, Weng PY et al (2020) Effectiveness of a three-stage intervention in reducing caregiver distress during pediatric hematopoietic stem cell transplantation: a randomized controlled trial. J Pediatric Oncol Nurs 37:377–389. https://doi.org/10.1177/1043454220911358

    Article  Google Scholar 

  148. Berry-Carter K, Barnett B, Canavera K et al (2021) Development of a structured peer mentoring program for support of parents and caregivers of children with cancer. J Pediatric Nurs 59:131–136. https://doi.org/10.1016/j.pedn.2021.03.031

    Article  Google Scholar 

  149. Kenney AE, Bedoya SZ, Gerhardt CA et al (2021) End of life communication among caregivers of children with cancer: a qualitative approach to understanding support desired by families. Palliat Support Care 19:715–722. https://doi.org/10.1017/S1478951521000067

    Article  Google Scholar 

  150. Tsitsi T, Charalambous A, Papastavrou E, Raftopoulos V (2017) Effectiveness of a relaxation intervention (progressive muscle relaxation and guided imagery techniques) to reduce anxiety and improve mood of parents of hospitalized children with malignancies: a randomized controlled trial in Republic of Cyprus and Gree. Eur J Oncol Nurs 26:9–18. https://doi.org/10.1016/j.ejon.2016.10.007

    Article  Google Scholar 

  151. Richards PS, Bergin AE (2006) Religious and spiritual practices as therapeutic interventions. A spiritual strategy for counseling and psychotherapy, 2nd edn, pp 251–279. https://doi.org/10.1037/11214-009

  152. Zafarian Moghaddam E, Behnam Vashani HR, Reihani T, Namazi Zadegan S (2016) The effect of Spiritual education on depression, anxiety and stress of caregivers of children with leukemia. J Torbat Heydariyeh Univ Med Sci 4:1–7

    Google Scholar 

  153. Tsimicalis A, Stevens B, Ungar WJ et al (2011) The cost of childhood cancer from the family’s perspective: a critical review. Pediatric Blood Cancer 56:707–717

    Article  Google Scholar 

  154. Ospina-Romero M, Portilla CA, Bravo LE et al (2016) Caregivers’ self-reported absence of social support networks is related to treatment abandonment in children with cancer. Pediatric Blood Cancer 63:825–831. https://doi.org/10.1002/pbc.25919

    Article  Google Scholar 

  155. Atwiine B, Busingye I, Kyarisiima R et al (2021) ‘Money was the problem’: caregivers’ self-reported reasons for abandoning their children’s cancer treatment in southwest Uganda. Pediatric Blood Cancer 68:e29311. https://doi.org/10.1002/pbc.29311

    Article  Google Scholar 

  156. Mehdizadeh H, Asadi F, Mehrvar A et al (2019) Smartphone apps to help children and adolescents with cancer and their families: a scoping review. Acta Oncol (Stockholm, Sweden) 58:1003–1014. https://doi.org/10.1080/0284186X.2019.1588474

    Article  Google Scholar 

  157. Mueller EL, Cochrane AR, Moore CM, et al (2020) The children’s oncology planning for emergencies (COPE) tool: prototyping with caregivers of children with cancer. AMIA. Annual Symposium proceedings AMIA Symposium 2020, pp 896–905

    Google Scholar 

  158. Wilford JG, McCarty R, Torno L et al (2020) A multi-modal family peer support-based program to improve quality of life among pediatric brain tumor patients: a mixed-methods pilot study. Children 7:35. https://doi.org/10.3390/children7040035

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Health Sciences, Department of Nursing, Cyprus University of Technology, Limassol, Cyprus

    Theologia Tsitsi & Koralia A. Michail

Authors
  1. Theologia Tsitsi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Koralia A. Michail
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Theologia Tsitsi .

Editor information

Editors and Affiliations

  1. Nursing, Cyprus University of Technology, Limassol, Cyprus

    Andreas Charalambous

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Tsitsi, T., Michail, K.A. (2023). Supporting Caregivers of Patients with Childhood Malignancies. In: Charalambous, A. (eds) Informal Caregivers: From Hidden Heroes to Integral Part of Care . Springer, Cham. https://doi.org/10.1007/978-3-031-16745-4_9

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-16745-4_9

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-16744-7

  • Online ISBN: 978-3-031-16745-4

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation