Family functioning, parental cancer-related emotions, and quality of life in childhood cancer patients

  • Murti Andriastuti Universitas Indonesia
  • Anisa Dwi Fathinasari Faculty of Medicine, Universitas Indonesia
  • Nurani Rahma Arafah
  • Annisa Aditya Asa
  • Khansa Salsabila
  • Fitri Primacakti
Keywords: family function; cancer-related emotion; quality of life; children; cancer

Abstract

Background Childhood cancer and its treatment affects not only children’s health, but also children’s and families’ psychosocial function, relationship, emotion, and quality of life.  Several studies in developed countries have been conducted to address this issue using the Family Adaptation and Cohesion Scales (FACES) III and the Situation-Specific Emotional Reaction Questionnaire (SSERQ). Screening psychosocial problems is crucial as part of cancer comprehensive care.

Objective To investigate the dynamics of family functioning, parental cancer-related emotions, and to evaluate possible associations with the child's quality of life.

Methods This cross-sectional study was done in child with cancer aged 0-18 years. Parents completed the validated Indonesian versions of three sets of questionnaires regarding subjects’ quality of life (PedsQL), family function (FACES III), and family cancer-related emotions (SSERQ). Validity and reliability tests were done to assess the Indonesian versions of the questionnaires.

Results A total of 269 subjects were recruited. Parental proxy of PedsQL evaluations revealed that the 8-12-year-old age group had significantly lower score than the other groups (P=0.014). Solid tumor subjects had significantly lower PedsQL score compared to subjects with hematological malignancy (P=0.001). The FACES III questionnaire results showed that connected families tended to have better PedsQL score based on children’s evaluation compared to disengaged families (P=0.049). No significant difference was found between adaptability of family function and PedsQL score. The SSERQ revealed significant associations between negative emotions and lower PedsQL scores in the children (all P=0.000).

Conclusions Parental proxy of PedsQL scores were significantly lower in older children (8 to 12 years). Children with connected families have significantly higher PedsQL scores than disengaged families, for the PedsQL children’s evaluation. Parents’ emotions (loneliness, helplessness, and uncertainty) experienced by a family member of a child with cancer are also correlated with lower PedsQL scores by both evaluations.

References

1. Steliarova-Foucher E, Colombet M, Ries LAG, Moreno F, Dolya A, Bray F, et al. International incidence of childhood cancer, 2001–10: a population-based registry study. Lancet Oncol. 2017;18:719–31. DOI: https://doi.org/10.1016/S1470-2045(17)30186-9
2. Abdel-Razeq H, Hashem H. Recent update in the pathogenesis and treatment of chemotherapy and cancer induced anemia. Crit Rev Oncol Hematol. 2020;145: e102837.DOI: https://doi.org/10.1016/j.critrevonc.2019.102837
3. Badan Penelitian dan Pengembangan Kesehatan, Kementerian Kesehatan Republik Indonesia. Riset Kesehatan Dasar RISKESDAS 2010. Jakarta: Kemenkes RI; 2013. p. 1–446.
4. Badan Penelitian dan Pengembangan Kesehatan, Kementerian Kesehatan Republik Indonesia. Riset Kesehatan Dasar 2018. Jakarta: Kemenkes RI; 2018. p. 1-198.
5. Long KA, Marsland AL. Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev. 2011;14:57–88. DOI: https://doi.org/10.1007/s10567-010-0082-z
6. Kestler SA, LoBiondo-Wood G. Review of symptom experiences in children and adolescents with cancer. Cancer Nurs. 2012;35:E31–49. DOI: https://doi.org/10.1097/NCC.0b013e3182207a2a
7. Van Schoors M, Caes L, Knoble NB, Goubert L, Verhofstadt LL, Alderfer MA. Systematic review: associations between family functioning and child adjustment after pediatric cancer diagnosis: a meta-analysis. J Pediatr Psychol. 2017;42:6–18. DOI: https://doi.org/10.1093/jpepsy/jsw070
8. Phillips-Salimi CR, Robb SL, Monahan PO, Dossey A, Haase JE. Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents. Int J Adolesc Med Health. 2014;26:19–26. DOI: https://doi.org/10.1515/ijamh-2012-0105
9. Da Silva FM, Jacob E, Nascimento LC. Impact of childhood cancer on parents’ relationships: An integrative review. J Nurs Scholarsh. 2010;42:250–61. DOI: https://doi.org/10.1111/j.1547-5069.2010.01360.x
10. Compas BE, Bemis H, Gerhardt CA, Dunn MJ, Rodriguez EM, Desjardins L, et al. Mothers and fathers coping with their children’s cancer: individual and interpersonal processes. Health Psychol. 2015;34:783–93. DOI: 10.1037/hea0000202
11. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39:800–12. DOI: https://doi.org/10.1097/00005650-200108000-00006
12. Pardede, Sudung & Marsubrin, Putri & Sekartini, Rini & Munasir, Zakiudin. (2019). Quality of Life of Nephrotics Children and Its Related Factors. Am J Clin Med. 7. 31-36. DOI: https://doi.org/10.12691/ajcmr-7-1-6.
13. Liu E, Twilt M, Tyrrell PN, Dropol A, Sheikh S, Gorman M, et al. Health-related quality of life in children with inflammatory brain disease. Pediatr Rheumatol. 2018;16:73-81. DOI: https://doi.org/10.1186/s12969-018-0291-4
14. Varni J. Scaling and Scoring for the Acute and Standard versions of the Pediatric Quality of Life InventoryTM PedsQLTM. Version 21.3 [Internet]. Mapi Research Trust. 2023. p. 9. Available from: https://www.pedsql.org/PedsQL-Scoring.pdf.
15. Amaya-Arias AC, Alzate JP, Eslava-Schmalbach JH. Construct and criterion validity of the PedsQLTM 4.0 instrument (Pediatric Quality of Life Inventory) in Colombia. Int J Prev Med. 2017;8:57-64. DOI: https://doi.org/10.4103/ijpvm.IJPVM_194_16
16. Kim J, Chung H, Amtmann D, Salem R, Park R, Askew RL. Symptoms and quality of life indicators among children with chronic medical conditions. Disabil Health J. 2014;7:96–104. DOI: https://doi.org/10.1016/j.dhjo.2013.08.007
17. Olson DH, Russell CS, Sprenkle DH. Circumplex model of marital and family systems: Vl. Theoretical update. Fam Process . 1983;22:69–83. DOI: https://doi.org/10.1111/j.1545-5300.1983.00069.x
18. Olson DH. Circumplex Model VII: Validation Studies and FACES III. Fam Process. 1986;25:337–51. DOI: https://doi.org/10.1111/j.1545-5300.1986.00337.x
19. Joh JY, Kim S, Park JL, Kim YP. Relationship between family adaptability, cohesion and adolescent problem behaviors: curvilinearity of circumplex model. Korean J Fam Med. 2013;34:169–77. DOI: https://doi.org/10.4082/kjfm.2013.34.3.169
20. =Grootenhuis MA, Last BF. Predictors of parental emotional adjustment to childhood cancer. Psychooncology. 1997;6:115–28. DOI: https://doi.org/10.1002/(SICI)1099-1611(199706)6:2<115::AID-PON252>3.0.CO;2-
21. Houtzager BA, Oort FJ, Hoekstra-Weebers JEHM, Caron HN, Grootenhuis MA, Last BF. Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients. J Pediatr Psychol. 2004;29:591–605. DOI: https://doi.org/10.1093/jpepsy/jsh061
22. Van Schoors M, De Paepe AL, Norga K, Cosyns V, Morren H, Vercruysse T, et al. Family members dealing with childhood cancer: a study on the role of family functioning and cancer appraisal. Front Psychol. 2019;10:1405-19. DOI: https://doi.org/10.3389/fpsyg.2019.01405
23. Raybin JL, Hendricks?Ferguson V, Cook P, Jankowski C. Associations between demographics and quality of life in children in the first year of cancer treatment. Pediatr Blood Cancer. 2021;68:e29388. DOI: https://doi.org/10.1002/pbc.29388
24. Fardell JE, Vetsch J, Trahair T, Mateos MK, Grootenhuis MA, Touyz LM, et al. Health-related quality of life of children on treatment for acute lymphoblastic leukemia: a systematic review. Pediatr Blood Cancer. 2017;64:e26489. DOI: https://doi.org/10.1002/pbc.26489
25. Schulte F, Wurz A, Reynolds K, Strother D, Dewey D. Quality of life in survivors of pediatric cancer and their siblings: the consensus between parent-proxy and self-reports. Pediatr Blood Cancer. 2016;63:677–83. DOI: https://doi.org/10.1002/pbc.25868
26. Racine NM, Khu M, Reynolds K, Guilcher GMT, Schulte FSM. Quality of life in pediatric cancer survivors: contributions of parental distress and psychosocial family risk. Curr Oncol. 2018;25:41–8. DOI: https://doi.org/10.3747/co.25.3768
27. Olson DH. Circumplex model of marital and family systems. J Fam Ther. 2000;22:144–67. DOI: https://doi.org/10.1111/1467-6427.00144
28. Van Schoors M, Caes L, Verhofstadt LL, Goubert L, Alderfer MA. Systematic review: family resilience after pediatric cancer diagnosis. J Pediatr Psychol. 2014;40:856–68. DOI: https://doi.org/10.1093/jpepsy/jsv055
29. Gilbert R, Bates CR, Khetawat D, Dreyer Gillette ML, Moore R. Risk and resilient functioning of families of children with cancer during the COVID-19 pandemic. Int J Environ Res Public Health. 2023;20:5208-12. DOI: https://doi.org/10.3390/ijerph20065208
30. Maurice-Stam H, Grootenhuis MA, Brons PPT, Caron HN, Last BF. Psychosocial indicators of health-related quality of life in children with cancer 2 months after end of successful treatment. J Pediatr Hematol Oncol. 2007;29:540–50. DOI: https://doi.org/10.1097/MPH.0b013e3181256b66
31. Van Schoors M, De Paepe AL, Lemiere J, Morez A, Norga K, Lambrecht K, et al. Family adjustment when facing pediatric cancer: the role of parental psychological flexibility, dyadic coping, and network support. Front Psychol. 2019;10:2740-2752. DOI: https://doi.org/10.3389/fpsyg.2019.02740
32. Huang IC, Thompson LA, Chi YY, Knapp CA, Revicki DA, Seid M, et al. The linkage between pediatric quality of life and health conditions: establishing clinically meaningful cutoff scores for the PedsQL. Value Health. 2009;12:773–81. DOI: https://doi.org/10.1111/j.1524-4733.2008.00487.x
33. Ozono S, Saeki T, Mantani T, Ogata A, Okamura H, Nakagawa S, et al. Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents. Psychooncology. 2010;19:545–52. DOI: https://doi.org/10.1002/pon.1606
34. Santos S, Crespo C, Canavarro MC, Kazak AE. Family rituals and quality of life in children with cancer and their parents: the role of family cohesion and hope. J Pediatr Psychol. 2015;40:664–71. DOI: https://doi.org/10.1093/jpepsy/jsv013
35. Carlsson T, Kukkola L, Ljungman L, Hovén E, von Essen L. Psychological distress in parents of children treated for cancer: an explorative study. PLoS One. 2019;14:e0218860. DOI: https://doi.org/10.1371/journal.pone.0218860
36. Morhun JM, Racine NM, Guilcher GMT, Tomfohr-Madsen LM, Schulte FSM. Health-related quality of life and well-being in parents of infants and toddlers with cancer. Curr Oncol. 2020;27:206–15. DOI: https://doi.org/10.3747/co.27.4937
37. Bakula DM, Sharkey CM, Perez MN, Espeleta HC, Gamwell KL, Baudino M, et al. The relationship between parent distress and child quality of life in pediatric cancer: a meta-analysis. J Pediatr Nurs. 2020;50:14–9. DOI: https://doi.org/10.1016/j.pedn.2019.09.024
Published
2024-06-04
How to Cite
1.
Andriastuti M, Fathinasari A, Arafah N, Asa A, Salsabila K, Primacakti F. Family functioning, parental cancer-related emotions, and quality of life in childhood cancer patients. PI [Internet]. 4Jun.2024 [cited 3Dec.2024];64(3):250-. Available from: https://www.paediatricaindonesiana.org/index.php/paediatrica-indonesiana/article/view/3648
Section
Pediatric Hemato-Oncology
Received 2023-11-23
Accepted 2024-04-26
Published 2024-06-04