Quality of Life of Families Caring for Preschool Children with Acute Lymphoblastic Leukemia undergoing Chemotherapy: A Qualitative Descriptive Study

Authors

  • Pattama Boonchuaylua Phrapokklao Nursing College, Chanthaburi, Faculty of Nursing, Praboromarajchanok Institute, Thailand.
  • Pregamol Rutchanagul Faculty of Nursing, Thammasat University, Thailand.
  • Puangpaka Kongvattananon Faculty of Nursing, Thammasat University, Thailand.
  • Charlotte Barry Florida Atlantic University, USA.

DOI:

https://doi.org/10.60099/prijnr.2023.262082

Keywords:

Acute lymphoblastic leukemia, Caring, chemotherapy, Children, Family, preschool, Quality of life, Qualitative description

Abstract

Childhood cancer presents as a significant and life-threatening illness that
profoundly impacts the well-being of the entire family of the affected child throughout
the trajectory of the disease. This qualitative descriptive study explored strategies to improve
family quality of life according to the perspective of families of preschool children with
acute lymphoblastic leukemia undergoing chemotherapy. Data were collected from
March to June 2019 through in-depth individual interviews with 32 family members
aged 20-50 years from the outpatient hematology department and pediatric ward.
Content analysis was used for data analysis which revealed three themes:
1) Modification of family function: they needed adjustment of family roles, preparing
family caregivers for cancer care, and maintaining family interactions; 2) Effectiveness of
family communication: there were contents, methods, and information sharing; and 3) Social
support for family caregiving, including external and spiritual support.
Findings could help nurses and other health providers identify and promote potentially
effective strategies to improve the quality of care and the quality of life of patients and families.
The findings also provide valuable insights for nurses to develop interventions to enhance
and promote the reorganization of family roles to take of the child with leukemia, as well as
chemotherapy treatment communication in the family and support for family caregiving.    

References

Bidwell SS, Peterson CC, Demanelis K, Zarins KR, Meza R, Sriplung H, et al. Childhood cancer incidence and survival in Thailand: a comprehensive population-based registry analysis, 1990-2011. Pediatr Blood Cancer.2019;66(1):e27428. doi:10.1002/pbc.27428.

World Health Organization. Cancer in children: facts and figures [Internet]. 2020 [cited 2021 Sep 1]. Available from:

https://www.who.int/news-room/fact-sheets/detail/cancer-in children

Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer statistics, 2021. CA Cancer J Clin. 2021;71(4):359. doi: 10.3322/caac.21669.

Miller KD, Nogueira L, Mariotto AB, Rowland JH, Yabroff KR, Alfano CM, Jemal A, Kramer JL, Siegel RL. Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin. 2019;69(5):363-85. doi: 10.3322/caac.21565.

Nguyen HTK, Terao MA, Green DM, Pui CH, Inaba H. Testicular involvement of acute lymphoblastic leukemia in children and adolescents: diagnosis, biology, and management. Cancer. 2021;127(17):3067-81. doi:10.1002/cncr.33609.

Kato M, Manabe A. Treatment and biology of pediatric acute lymphoblastic leukemia. Pediatr Int. 2018;60(1):4-12. doi: 10.1111/ped.13457.

Stenmarker M, Enskär K, Björk M, Pinkava M, Rolander B, Golsäter M. Childhood cancer survivors: self-reported quality of life during and after the cancer trajectory. Asia Pac J Oncol Nurs. 2020;7(4):336-45. doi: 10.4103/apjon.apjon_22_20.

Enskär K, Darcy L, Björk M, Knutsson S, Huus K. Experiences of young children with cancer and their parents with nurses’ caring practices during the cancer trajectory.J Pediatr Oncol Nurs. 2020;37(1):21-34. doi: 10.1177/1043454219874007.

Reshetnikov, A., Gevandova, M., Prisyazhnaya, N. et al. The role of parents in their child’s cancer diagnosis, treatment, rehabilitation, and socialization. Indian J Pediatr. 2022:1-5.doi: 10.1007/s12098-022-04387-7.

Modanloo S, Rohani C, Shirinabadi Farahani A, Vasli P, Pourhosseingholi A. General family functioning as a predictor of quality of life in parents of children with cancer.J Pediatr Nurs. 2019;44:e2-e8. doi: 10.1016/j.pedn.2018.08.013.

Van Schoors M, De Paepe AL, Norga K, Cosyns V, Morren H, Vercruysse T, Goubert L, Verhofstadt LL. Family members

dealing with childhood cancer: a study on the role of family functioning and cancer appraisal. Front Psychol. 2019;10:1405. doi: 10.3389/fpsyg.2019.01405.

Mondal M, Dey T, Poddar S. A study to assess the quality of Life (QOL) among parents of children with acute lymphoblastic leukemia (ALL) attending oncology out patient department (OPD) in selected hospital of Kolkata, West Bengal, India. Malaysian J Med Health Sci. 2020;16(110):125-30.

Zuna N, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing about family quality of life. In: Kober R, editor. Enhancing the quality of life of people with intellectualdisability. Dordrecht: Springer; 2011. pp. 241-78.

Francisco Mora C, Ibáñez A, Balcells-Balcells A. State of the art of family quality of life in early care and disability: a systematic review. Int J Environ Res Public Health.2020;17(19):7220. doi: 10.3390/ijerph17197220.

Møller JK, Jespersen E, Lindahl-Jacobsen R, Ahrenfeldt LJ. Associations between perceived information needs and anxiety/depressive symptoms among cancer caregivers: a cross-sectional study. J Psychosoc Oncol. 2020;38(2):171-87. doi: 10.1080/07347332.2019.1664699.

Luo YH, Li WHC, Cheung AT, Ho LLK, Xia W, He XL, Zhang JP, Chung JOK. Relationships between resilience and quality of life in parents of children with cancer. J Health Psychol. 2022;27(5):1048-56. doi: 10.1177/1359105321990806.

Gürcan M, Atay Turan S. Examining the expectations of healing care environment of hospitalized children with cancer based on Watson’s theory of human caring. J Adv Nurs. 2021;77(8):3472-82. doi: 10.1111/jan.14934.

Balcells-Balcells A, Giné C, Guàrdia-Olmos J, Summers JA, Mas JM. Impact of supports and partnership on family quality of life. Res Dev Disabil. 2019;85:50-60. doi:10.1016/j.ridd.2018.10.006.

Enea V, Rusu DM. Raising a child with autism spectrum disorder: a systematic review of the literature investigating parenting stress. J Ment Health Res Intellect Disabil. 2020;13(4):283-321. doi: 10.1080/19315864.2020.1822962.

Venunathan A, Muthugounder K, Devi VSR. Quality of life among the parents of children with hematological malignancies: a pilot study. Int J Contemp Med. 2021;9(2):29-36. doi: 10.37506/ijocm. v9i2.3076.

Lewandowska A. Influence of a child’s cancer on the functioning of their family. Children (Basel). 2021;8(7):592. doi: 10.3390/children8070592.

Ogez D, Péloquin K, Bertout L, Bourque CJ, Curnier D, Drouin S, et al. Psychosocial intervention programs for parents of children with cancer: a systematic review and critical comparison of programs’ models and development. J Clin Psychol Med Settings. 2019;26(4);550-74. doi:10.1007/s10880-019-09612-8.

Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-40. doi: 10.1002/1098-240x(200008)23:4<334::aidnur9>3.0.co;2-g.

Creswell JW, Creswell JD. Research design: qualitative, quantitative and mixed methods approaches. 5th ed. California: Sage publications; 2018.

Lindgren BM, Lundman B, Graneheim UH. Abstraction and interpretation during the qualitative content analysis process. Int J Nurs Stud. 2020;108:103632. doi:10.1016/j.ijnurstu.2020.103632.

Wisawatapnimit P. Assessment of family quality of life among families with a member who has cancer [dissertation]. [Nashville, USA]: Vanderbilt University; 2009.

Santos WMS, Santos JS, Hilári JSM, Maia AMC, Andrade RD, Halboth NV. Social support perceived by family and caregivers of children with cancer. Int J Pediatr Child Health. 2019;7(1):28-35. doi: 10.12974/2311-8687. 2019.07.4.

Melguizo-Garín A, Hombrados-Mendieta I, José Martos-Méndez M, Ruiz-Rodríguez I. Social support received and provided in the adjustment of parents of children with cancer.Integr Cancer Ther. 2021;20:15347354211 044089. doi:10.1177/15347354211044089.

Teerawichitchainan B. Expansion of Thailand’s social pension policy and its implications for family support for older persons. Innov Aging. 2020;4(Suppl 1):344–5.doi: 10.1093/geroni/igaa057.1107.

Thapanakulsuk P, Sirapo-ngam Y, Ferrans CE, Orathai P, Junda T. Psychometric testing of a spiritual well-being scale for people with cancer. Pacific Rim Int J Nurs Res.2020;24(1):39-53.

Jansen-van Vuuren J, Lysaght R, Batorowicz B, Dawud S, Aldersey HM. Family quality of life and support: perceptions of family members of children with disabilities in Ethiopia. Disabilities. 2021;1(3):233-56. doi: 10.3390/disabilities1030018.

Sinclair S, Jaggi P, Bouchal SR, Kuhn S, Schulte F, Guilcher GM, Rapoport A, Punnett A, Fernandez CV, Letourneau N, Chung J. Implementing compassion in pediatric healthcare: a qualitative study of Canadian patients’, parents’, and healthcare providers’ perspectives. J Pediatr Nurs. 2022;62:e103-12. doi.org/10.1016/j.pedn.2021.08.001.

Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. J Clin Oncol. 2020;38(9):954-62. doi: 10.1200/JCO.18.02331.

Utami KC, Puspita LM, Karin PAES. Family support in improving the quality of life of children with cancer undergoing chemotherapy. Enferm Clin. 2020;30(Suppl 7):34-7. doi: 10.1016/j.enfcli.2020.07.007.

Makhoul-Khoury S, Ben-Zur H. The effects of coping strategies on distress and quality of life among Jewish and Arab mothers with a child diagnosed with cancer. Eur J Oncol Nurs. 2022;58:102140. doi: 10.1016/j.ejon. 2022.102140.

Aarthun A, Øymar KA, Akerjordet K. Parental involvement in decision‐making about their child’s health care at the hospital.

Nurs Open. 2018;6(1):50-8. doi: 10.1002/nop2.180.

Atout M, Alrimawi I, Daibes MA, Abusalameh E. The lived experience of family members who care for children with cancer: an interpretative phenomenological approach. Eur J Oncol Nurs. 2021;52:101978. doi: 10.1016/j.ejon.2021.101978.

Toledano-Toledano F, Luna D, Moral de la Rubia J, Martínez Valverde S, Bermúdez Morón CA, Salazar García M, Vasquez Pauca MJ. Psychosocial factors predicting resilience in family caregivers of children with cancer: a cross-sectional study. Int J Environ Res Public Health.2021;18(2):748. doi: 10.339.0/ijerph18020748.

Bouchard EG, Prince MA, McCarty C, Vincent PC, Patel H, LaValley SA, Collins RL, Sahler OJZ, Krenz T, Kelly KM. nderstanding social network support, composition, and structure among cancer caregivers. Psychooncology. 2023;32(3):408-17. doi: 10.1002/pon.6087.

Fijałkowska,D.; Bielawska-Batorowicz, E. Psychometric properties of the Polish version of the Parental Feelings Inventory. Int J Environ Res Public Health. 2021;18(11):6003. doi: 10.3390/ijerph18116003.

Liu N, Zhang J. Experiences of caregivers of family member with schizophrenia in China: a qualitative study. Perspect

Psychiatr Care. 2020;56(1):201-12. doi: 10.1111/ppc.12412.

Koohkan E, Yousofian S, Rajabi G, Zare-Farashbandi F. Health information needs of families at childhood cancer:

a qualitative study. J Educ Health Promot. 2019;8:246.doi: 10.4103/jehp.jehp_300_19.

Santacroce SJ, Kneipp SM. Influence of pediatric cancerrelated financial burden on parent distress and other stressrelated

symptoms. Pediatr Blood Cancer. 2020;67(3):e28093. doi: 10.1002/pbc.28093.

Downloads

Published

2023-06-28

How to Cite

1.
Boonchuaylua P, Rutchanagul P, Puangpaka Kongvattananon, Charlotte Barry. Quality of Life of Families Caring for Preschool Children with Acute Lymphoblastic Leukemia undergoing Chemotherapy: A Qualitative Descriptive Study. PRIJNR [Internet]. 2023 Jun. 28 [cited 2024 Apr. 28];27(3):585-600. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/262082