Needs of Parents of Children with Cancer for a Parent Supportive Meeting

Authors

  • Dwi Susilawati Department of Child Health, Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia; Department of Child Health, Dr. Sardjito Hospital, Yogyakarta, Indonesia image/svg+xml
  • Mei Neni Sitaresmi Department of Child Health, Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia; Department of Child Health, Dr. Sardjito Hospital, Yogyakarta, Indonesia image/svg+xml https://orcid.org/0000-0002-8620-712X
  • Sri Mulatsih Department of Child Health, Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia; Department of Child Health, Dr. Sardjito Hospital, Yogyakarta, Indonesia image/svg+xml
  • Krisna Handayani Amsterdam UMC, Vrije Universiteit, Cancer Center Amsterdam, Amsterdam, The Netherlands image/svg+xml
  • Braghmandita Widya Indraswari Department of Child Health, Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia; Department of Child Health, Dr. Sardjito Hospital, Yogyakarta, Indonesia image/svg+xml https://orcid.org/0000-0002-5194-0436
  • Gertjan Kaspers Emma’s Children’s Hospital, Amsterdam UMC, VU University, Amsterdam, The Netherlands; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands image/svg+xml
  • Saskia Mostert Emma’s Children’s Hospital, Amsterdam UMC, VU University, Amsterdam, The Netherlands; Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands image/svg+xml https://orcid.org/0000-0002-4583-8603

DOI:

https://doi.org/10.3889/oamjms.2022.8042

Keywords:

childhood cancer, parent supportive meetings, low-middle-income countries

Abstract

BACKGROUND: Parent supportive meetings (PSM) may assist families in reducing the distress of having a child with cancer. Little is known about what parents regard as their needs for support.

AIM: The purposes of this study were to investigate the needs and preferences of parents of children with cancer for PSM and its determinants.

METHODS: We conducted a cross-sectional study using semi-structured questionnaires. Parents of childhood cancer patients who attended an Indonesian academic hospital were recruited between March and July 2019.

RESULTS: Parents of 200 patients participated in this study (response rate 95%). Parents are interested in group (90%) and individual (84%) support to help them deal with stress related to their child’s illness. The best time to attend the supportive meeting is during treatment (53%), the best format is a drop-in basis (83%), and the best schedule is monthly (58%). Attendance is very important to: explore services and available support in the community (70%), get advice about family or relationship issues (62%), and learn how other parents cope with stress and anxiety (59%). Significantly more mothers (93%) than fathers (84%) are interested in supportive meetings (p = 0.046). More frequent meetings are preferred by low-educated (48%) than high-educated parents (31%, p = 0.015) and by younger (55%) than older parents (35%, p = 0.005).

CONCLUSION: This study shows that parents of children with cancer at an Indonesian academic hospital are interested in monthly drop-in-based PSM during the whole treatment course to help them better cope with stress related to their child’s illness.

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References

Al-Momani SM. Informal social support: A collaborative stress management initiative for mothers of cancer children. Int J Psychol Stud. 2013;5(2):19-31. https://doi.org/10.5539/ijps.v5n2p19 DOI: https://doi.org/10.5539/ijps.v5n2p19

Kamihara J, Nyborn JA, Olcese ME, Nickerson T, Mack JW. Parental hope for children with advanced cancer. Pediatrics. 2015;135(5):868-74. https://doi.org/10.1542/peds.2014-2855 PMid:25847801 DOI: https://doi.org/10.1542/peds.2014-2855

Van Dijk-Lokkart EM, Braam KI, Kaspers GJ, van Dulmen-den Broeder E, Takken T, Grootenhuis MA, et al. Applicability and evaluation of a psychosocial intervention program for childhood cancer patients. Support Care Cancer. 2015;23(8):2327-33. https://doi.org/10.1007/s00520-014-2576-6 PMid:25577501 DOI: https://doi.org/10.1007/s00520-014-2576-6

Mack JW, Joffe S. Communicating about prognosis: Ethical responsibilities of pediatricians and parents. Pediatrics. 2014;133(Suppl 1):S24-30. https://doi.org/10.1542/peds.2013-3608E PMid:24488537 DOI: https://doi.org/10.1542/peds.2013-3608E

Mostert S, Arora RS, Arreola M, Bagai P, Friedrich P, Gupta S, et al. Abandonment of treatment for childhood cancer: Position statement of a SIOP PODC working group. Lancet Oncol. 2011;12(8):719-20. https://doi.org/10.1016/s1470-2045(11)70128-0 PMid:21719348 DOI: https://doi.org/10.1016/S1470-2045(11)70128-0

Sitaresmi MN, Mostert S, Schook RM, Sutaryo S, Veerman AJ. Treatment refusal and abandonment in childhood acute lymphoblastic leukemia in Indonesia: An analysis of causes and consequences. Psychooncology. 2010;19(4):361-7. https://doi.org/10.1002/pon.1578 PMid:19434599 DOI: https://doi.org/10.1002/pon.1578

American Academy of Pediatrics. Guidelines for the pediatric cancer center and the role of such centers in diagnosis and treatment. American academy of pediatrics section statement section on hematology/oncology. Pediatrics. 1997;99(1):139-40. https://doi.org/10.1542/peds.99.1.139 PMid:8989352 DOI: https://doi.org/10.1542/peds.99.1.139

Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer. 2015;62 Suppl 5(Suppl 5):S632-83. https://doi.org/10.1002/pbc.25761 PMid:26700921 DOI: https://doi.org/10.1002/pbc.25761

Jones B, Currin-Mcculloch J, Pelletier W, Sardi-Brown V, Brown P, Wiener L. Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers. Soc Work Health Care. 2018;57(4):221-49. https://doi.org/10.1080/00981389.2018.1441212 PMid:29498614 DOI: https://doi.org/10.1080/00981389.2018.1441212

Hocking MC, Kazak, AE, Schneider S, Barkman D, Barakat LP, Deatrick JA. Parent perspectives on family-based psychosocial interventions in pediatric cancer: A mixed-methods approach. Support Care Cancer. 2014;22(5):1287-94. https://doi.org/10.1007/s00520-013-2083-1 PMid:24337762 DOI: https://doi.org/10.1007/s00520-013-2083-1

Ji Q, Currin-McCulloch JA, Zhang A, Streeter CL, Jones BL, Chen Y. Assessing the needs of parents of children diagnosed with cancer in China: A psychometric study developing a needs assessment tool. J Pediatr Oncol Nurs. 2018;35(1):6-15. https://doi.org/10.1177/1043454217723862 PMid:28849719 DOI: https://doi.org/10.1177/1043454217723862

Maunder K. Investigating Supportive Care Needs of Parents of Children with Cancer: Is a Parent Support Group Intervention a Feasible Solution? Canada: Institute of Medical Sciences, University of Toronto; 2012.

Indraswari BW, Kelling E, Vassileva SM, Mulatsih S, Supriyadi E, Widjajanto PH, et al. Impact of universal health coverage on childhood cancer in Indonesia. Pediatr Blood Cancer. 2021;68(9):e29186. https://doi.org/10.1002/pbc.29186 PMid:34114307 DOI: https://doi.org/10.1002/pbc.29186

Kukkola L, Hoven E, Cernvall M, von Essen L, Grongvist H. Perceptions of support among Swedish parents of children after end of successful cancer treatment: A prospective, longitudinal study. Acta Oncol. 2017;56(12):1705-11. https://doi.org/10.1080/0284186X.2017.1374554 PMid:28971717 DOI: https://doi.org/10.1080/0284186X.2017.1374554

Kaushal T, Satapathy S, Chadda RK, Bakshi S, Sagar R, Sapra S. Hospital based psychosocial support program for children with ALL and their families: A comprehensive triad’s perspective. Indian J Pediatr. 2018;86(2):118-25. https://doi.org/10.1007/s12098-018-2679-z PMid:29679216 DOI: https://doi.org/10.1007/s12098-018-2679-z

Vrijmoet-Wiersma CM, Van Klink JM, van Klink JM, Kolk AM, Koopman HM, Ball LM, et al. Assessment of parental psychological stress in pediatric cancer: A review. J Pediatr Psychol. 2008;33(7):694-706. https://doi.org/10.1093/jpepsy/jsn007 PMid:18287109 DOI: https://doi.org/10.1093/jpepsy/jsn007

Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klip EC. Risk factors for psychological maladjustment of parents of children with cancer. J Am Acad Child Adolesc Psychiatry. 1999;38(12):1526-35. https://doi.org/10.1097/00004583-199912000-00014 PMid:10596253 DOI: https://doi.org/10.1097/00004583-199912000-00014

Lindahl-Norberg A, Lindblad F, Boman KK. Coping strategies in parents of children with cancer. Soc Sci Med. 2005;60(5):965-75. https://doi.org/0.1016/j.socscimed.2004.06.030 PMid:15589667 DOI: https://doi.org/10.1016/j.socscimed.2004.06.030

Patterson JM, Holm KE, Gurney JG. The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psychooncology. 2004;13(6):390-407. https://doi.org/10.1002/pon.761 PMid:15188446 DOI: https://doi.org/10.1002/pon.761

Barrera M, D’Agostino NM, Gibson J, Gilbert T, Weksberg R, Malkin D. Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology. 2004;13(9):630-41. https://doi.org/10.1002/pon.765 PMid:15334531 DOI: https://doi.org/10.1002/pon.765

Law E, Fisher E, Eccleston C, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2019;3(3):CD009660. https://doi.org/10.1002/14651858.CD009660.pub4 PMid:30883665 DOI: https://doi.org/10.1002/14651858.CD009660.pub4

Machado da Silva F, Jacob E, Nascimento LC. Impact of childhood cancer on parents’ relationships: An integrative review. J Nurs Scholarsh. 2010;42(3):250-61. https://doi.org/10.1111/j.1547-5069.2010.01360.x PMid:20738735 DOI: https://doi.org/10.1111/j.1547-5069.2010.01360.x

Lavee Y, May-Dan M. Patterns of change in marital relationships among parents of children with cancer. Health Soc Work. 2003;28(4):255-63. https://doi.org/10.1093/hsw/28.4.255 PMid:14679704 DOI: https://doi.org/10.1093/hsw/28.4.255

McGrath P. Identifying support issues of parents of children with leukemia. Cancer Pract. 2001;9(4):198-205. https://10.1046/j.1523-5394.2001.94008.x PMid:11879311 DOI: https://doi.org/10.1046/j.1523-5394.2001.94008.x

Steffen B, Castodi L. Surviving the storm: The influence of the oncologic treatment of a child on the conjugal relationship. Psicol Cienc Prof. 2006;26(3):406-25. https://doi.org/10.1590/S1414-98932006000300006 DOI: https://doi.org/10.1590/S1414-98932006000300006

Pujiati D. Female sexuality in patriarchal culture. Muwazah. 2016;8(1):26-47.

World Health Organization. Gender and Genetics: Genetic Stigmatization. Available from: https://www.who.int/genomics/ gender/en/index3.html. [Last accessed on 2021 Oct 21].

Handayani K, Indraswari BW, Sitaresmi MN, Mulatsih S, Widjajanta PH, Kors WA, et al. Treatment outcome of children with retinoblastoma in a tertiary care referral hospital in Indonesia. Asian Pac J Cancer Prev. 2021;22(5):1613-21. https://doi.org/10.31557/apjcp.2021.22.5.1613 PMid:34048193 DOI: https://doi.org/10.31557/APJCP.2021.22.5.1613

Yeh CH. Gender differences of parental distress in children with cancer. J Adv Nurs. 2002;38(6):598-606. https://doi.org/10.1046/j.1365-2648.2000.02227.x PMid:12067399 DOI: https://doi.org/10.1046/j.1365-2648.2000.02227.x

Mu PF, Ma FC, Hwang B, Chao YM. Families of children with cancer: The impact on anxiety experienced by fathers. Cancer Nurs. 2002;25(1):66-73. https://doi.org/10.1097/00002820-200202000-00012 PMid:11838722 DOI: https://doi.org/10.1097/00002820-200202000-00012

Magnis-Suseno F. Javanese Ethics and Worldview: The Javanese Idea of the Good Life. Jakata: PT Gramedia; 1997. Available from: https://www.repo.driyarkara.ac.id/id/eprint/61 [Last accessed on 2021 Oct 21].

Clarke NE, McCarthy MC, Downie P, Ashley DM, Anderson VA. Gender differences in the psychosocial experience of parents of children with cancer: A review of the literature. Psychooncology. 2009;18(9):907-15. https://doi.org/10.1002/pon.1515 PMid:19319828 DOI: https://doi.org/10.1002/pon.1515

Dolgin MJ, Phipps S, Fairclough DL, Sahler OJ, Askins M, Noll RB, et al. Trajectories of adjustment in mothers of children newly diagnosed with cancer: A natural history investigation. J Pediatr Psychol. 2007;32(7):771-82. https://doi.org/10.1093/ jpepsy/jsm013 PMid:17403910 DOI: https://doi.org/10.1093/jpepsy/jsm013

Barrera M, Atenafu E, Doyle J, Berlin-Romalis D, Hancock K. Differences in mothers’ and fathers’ psychological distress after pediatric SCT: A longitudinal study. Bone Marrow Transplant. 2012;47(7):934-9. https://doi.org/10.1038/bmt.2011.206 PMid:22041851 DOI: https://doi.org/10.1038/bmt.2011.206

Norberg AL, Lindblad F, Boman KK. Support-seeking, perceived support, and anxiety in mothers and fathers after children’s cancer treatment. Psychooncology. 2006;15(4):335-243. https://doi.org/10.1002/pon.960 PMid:16106491 DOI: https://doi.org/10.1002/pon.960

Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klip EC. Psychological adaptation and social support of parents of pediatric cancer patients: A prospective longitudinal study. J Pediatr Psychol. 2001;26(4):225-35. https://doi.org/10.1093/jpepsy/26.4.225 PMid:11329482 DOI: https://doi.org/10.1093/jpepsy/26.4.225

Foreman T, Willis L, Goodenough B. Hospital-based support groups for parents of seriously unwell children: An example from pediatric oncology in Australia. Soc Work Groups. 2005;28(2):3-21. https://doi.org/10.1300/J009v28n02_02 DOI: https://doi.org/10.1300/J009v28n02_02

Pai AL, Drotar D, Zebracki K, Moore M, Youngstrom E. A meta- analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment. J Pediatr Psychol. 2006;31(9):978-88. https://doi.org/10.1093/jpepsy/jsj109 PMid:16514049 DOI: https://doi.org/10.1093/jpepsy/jsj109

Beltrao MR, Vasconcelos MG, Pontes CM, Albuquerque MC. Childhood cancer: Maternal perceptions and strategies for coping with diagnosis. J Pediatr (Rio J). 2007;83(6):562-6. DOI: https://doi.org/10.2223/JPED.1723

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Published

2022-07-25

How to Cite

1.
Susilawati D, Sitaresmi MN, Mulatsih S, Handayani K, Indraswari BW, Kaspers G, Mostert S. Needs of Parents of Children with Cancer for a Parent Supportive Meeting. Open Access Maced J Med Sci [Internet]. 2022 Jul. 25 [cited 2024 Mar. 28];10(G):744-50. Available from: https://oamjms.eu/index.php/mjms/article/view/8042

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Nursing in Pediatrics

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