A Grounded Theory of the Process of Adherence to Oral Chemotherapy in Hispanic and Caucasian Children and Adolescents With Acute Lymphoblastic Leukemia

Abstract

Children and adolescents with acute lymphoblastic leukemia (A.L.L.) receive treatment that relies on daily self- or parent/caregiver-administered oral chemotherapy for approximately two years. Despite the fact that pediatric A.L.L. is uniformly fatal without adequate treatment, non-adherence to oral chemotherapy has been observed in up to one-third of patients. Little is known about the reasons for non-adherence in these patients. This study employed Straussian grounded theory methodology to develop and validate a model to explain the process of adherence to oral chemotherapy in children and adolescents with A.L.L. Thirty-eight semi-structured interviews (with 17 patients and 21 parents/caregivers) and four focused group discussions were conducted. Three stages were identified in the process of adherence: (1) Recognizing the Threat, (2) Taking Control, and (3) Managing for the Duration. Doing Our Part was identified as the core theme explaining the process of adherence, and involves the parent (or patient) taking responsibility for assuring that medications are taken as prescribed. Understanding the association between taking oral chemotherapy and control/cure of leukemia (Making the Connection) appeared to mediate adherence behaviors.

Medical and Psychosocial Associates of Nonadherence in Adolescents With Cancer

“…However, findings on associations between treatment-related variables (ie, treatment modality, complexity, and duration; adverse impact on daily living) and adherence outcomes in pediatric cancer are mixed (Butow et al, 2010; Pritchard et al, 2006; Tamaroff, Festa, Adesman, & Walco, 1992). Studies with adolescents with cancer have reported forgetting to take medication as a leading reason for nonadherence (Hawwa et al, 2009; Landier et al, 2011; Mancini et al, 2012), which is also well documented in the broader adolescent chronic illness literature (La Greca & Mackey, 2009). Modifiable psychosocial patient-level associates, including higher depression and lower self-esteem, have also been found to relate to nonadherence in adolescents with cancer (Kennard et al, 2004; Malbasa et al, 2007; Tebbi et al, 1986).…”

“…Their model emphasizes the role of the parent, in conjunction with the child, in taking responsibility for medication adherence. To be successful, the following must be present: recognition of life threat, ability to take control, and ability to manage adherence consistently (Landier et al, 2011). Our study is informed by this model in that we examine both parent and child perspectives on adherence and related associates, with the aim to better understand how adolescents can maintain adherence long term.…”

Rethinking Adherence: A Proposal for a New Approach to Risk Assessment

“…31,32 Improving AYA Adherence A recent qualitative investigation among AYA oncology patients described a ''process of adherence'' consisting of three distinct steps. 33 To adhere to a treatment regimen, patients must: (1) recognize the threat to long-term health and well-being posed by their cancer diagnosis, (2) take control of their treatment, and (3) manage it for the duration of therapy and survivorship. Less adherent behaviors may manifest if any or all of these steps are bypassed.…”

Adherence-Related Issues in Adolescents and Young Adults with Hematological Disorders

“…The literature relies upon qualitative studies, often with small sample sizes involving questionnaires and in-depth interviews, and systematic reviews regarding the reasons of nonadherence, some of which present complex models of nonadherence [67,68]. Those in the field of hematology [69,70] may afford a unique insight into these diseases, and multicomponent tools can enable an integrated assessment of risk of nonadherence [71,72]. One qualitative study of 6 AYA patients under maintenance therapy for ALL identified 4 critical elements affecting adherence: a desire for normalcy, egocentrism, concrete thinking and parental involvement [73].…”