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Article

Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study

1
Faculty of Pharmacy, Université Laval, Québec, QC G1V 0A6, Canada
2
Department of Pharmacy, CHU de Québec-Université Laval, Québec, QC G1V 4G2, Canada
3
Population Health and Optimal Health Practices Axis, CHU de Québec Research Center-Université Laval, Québec, QC G1S 4L8, Canada
4
School of Psychology, Université Laval, Québec, QC G1V 0A6, Canada
5
Division of Pediatric Hematology-Oncology, CHU de Québec-Université Laval, Québec, QC G1V 4G2, Canada
6
Reproduction, Mother and Youth Health Axis, CHU de Québec Research Center-Université Laval, Québec, QC G1V 4G2, Canada
7
Faculty of Medicine, Université Laval, Québec, QC G1V 0A6, Canada
8
Oncology Axis, CHU de Québec Research Center-Université Laval, Québec, QC G1V 4G2, Canada
*
Authors to whom correspondence should be addressed.
Should be considered joint first author.
Curr. Oncol. 2021, 28(6), 4377-4391; https://doi.org/10.3390/curroncol28060372
Received: 3 September 2021 / Revised: 25 October 2021 / Accepted: 26 October 2021 / Published: 1 November 2021
(This article belongs to the Special Issue Supportive Care Needs of Cancer Patients and Caregivers)
Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. Treatment includes home-based oral chemotherapies (OCs) (e.g., 6-mercaptopurine and dexamethasone) taken for 2 to 3 years. The management of OC can be challenging for children and their parents. However, the multifaceted experience of families with children taking OC for ALL is largely undescribed. We report the experience with these OCs from the parents’ perspective. We conducted a qualitative descriptive study. Semi-structured interviews were conducted with the parents of children with ALL aged < 15 years, followed in a specialized university-affiliated center. The interviews were fully transcribed and thematically analyzed. Thirteen of the seventeen eligible parents (76.5%) participated in the study. The parents’ motivation to follow the recommendations provided by the multidisciplinary care team regarding OC was very high. The quantity and the quality of the information received were judged adequate, and the parents reported feeling knowledgeable enough to take charge of the OC at home. Adapting to the consequences of OC on family daily life was collectively identified as the biggest challenge. This includes developing and maintaining a strict daily routine, adapting to the child’s neurobehavioral changes during dexamethasone days and adapting family social life. Our findings have several implications for enhancing the support offered to families with home-based OC for ALL. Supportive interventions should consider the family as a whole and their needs should be regularly monitored. Specific attention should be paid to the development and maintenance of a routine, to the parental burden, and to the emotional impact, especially regarding dexamethasone. View Full-Text
Keywords: acute lymphoblastic leukemia; antineoplastic agents; cancer; child; medication adherence; qualitative research acute lymphoblastic leukemia; antineoplastic agents; cancer; child; medication adherence; qualitative research
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MDPI and ACS Style

Camiré-Bernier, É.; Nidelet, E.; Baghdadli, A.; Demers, G.; Boulanger, M.-C.; Brisson, M.-C.; Michon, B.; Lauzier, S.; Laverdière, I. Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study. Curr. Oncol. 2021, 28, 4377-4391. https://doi.org/10.3390/curroncol28060372

AMA Style

Camiré-Bernier É, Nidelet E, Baghdadli A, Demers G, Boulanger M-C, Brisson M-C, Michon B, Lauzier S, Laverdière I. Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study. Current Oncology. 2021; 28(6):4377-4391. https://doi.org/10.3390/curroncol28060372

Chicago/Turabian Style

Camiré-Bernier, Étienne, Erwan Nidelet, Amel Baghdadli, Gabriel Demers, Marie-Christine Boulanger, Marie-Claude Brisson, Bruno Michon, Sophie Lauzier, and Isabelle Laverdière. 2021. "Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study" Current Oncology 28, no. 6: 4377-4391. https://doi.org/10.3390/curroncol28060372

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