Adaptation of an Intervention to Reduce Disparities in School HRQOL for Latino Childhood Cancer Survivors

Abstract

Objective Survivors of childhood leukemia, especially those from low socioeconomic status households, often experience persistent neurocognitive and academic impairment. This study adapted an existing parent training intervention to improve outcomes for low-acculturated, Spanish-speaking Latino parents of children with leukemia and pilot tested that intervention for feasibility. Methods Semistructured interviews were conducted with a focus group of 20 Latino parents of children treated for leukemia. Ten Latino families participated in a pilot study of the adapted parenting intervention, consisting of eight sessions over 6 months. Results Focus groups revealed that parents unanimously supported a parenting intervention but barriers to participation included time constraints, transportation issues, and anxiety in the hospital environment. The parents also highlighted cultural factors that could contribute to the health disparity, such as lack of knowledge and efficacy in facilitating their child’s progress with learning and school. In the pilot study, adherence was 90%, establishing feasibility, and the adapted intervention was considered beneficial. The median parenting efficacy scores improved from preintervention to postintervention (median 3.40 vs. 3.94; p < .011), as did parent-reported school functioning of the child (median 50.00 vs. 60.00; p = .088). Conclusions This study addressed a health disparity by culturally adapting a parenting intervention, which was designed to improve school functioning, to meet the needs and preferences of low-acculturated, Spanish-speaking families of children with leukemia in Southern California. The pilot study demonstrated that the adapted intervention is feasible and acceptable in the target population. A larger trial is underway to test the efficacy of this adapted parenting intervention.

Integrative review of school integration support following pediatric cancer

“…Ellis et al [ 22 ] implemented a program in which children connected with their peers at school through videoconferencing, while Inhestern et al [ 23 ] described a family rehabilitation program where children were able to interact with other children with cancer while in the hospital. Parents in two studies received self-efficacy training on how to help their child succeed in school and access school and community resources [ 43 , 49 ]. One study detailed a medical follow-up program for the child and family post-cancer treatment to ensure families received the support they needed and included medical, educational, psychosocial, and neurocognitive follow-up [ 47 ].…”

“…Six studies described programs designed to increase parent or school faculty knowledge. Programs included SLPs, meeting with a family advocate, and parent self-efficacy training to improve parent knowledge of available school resources, child school needs, and how to help their child in school [ 42 , 41 , 45 , 35 , 43 , 49 ]. In one study describing a SLP, parents also reported increased school faculty knowledge of their child’s academic needs [ 42 ].…”

“…In Bava et al [ 35 ], many parents requested IEPs or 504 plans following the advocacy program. Parents perceived that both they and their child benefited from the programs they received during school integration [ 42 , 41 , 23 , 20 , 22 – 49 ]. However, in van’t Hooft et al [ 47 ], parents felt as though there was still a large burden on them to ensure follow-up for the child, especially as time progressed.…”

“…School integration programs were found to be helpful in facilitating support. Parents particularly appreciated SLPs and other programs in which they gained knowledge about how to help their child in school or advocate for their child [ 42 , 41 , 35 , 43 , 49 ]. SLPs were also perceived as helpful in bridging communication between healthcare providers and school faculty [ 42 , 41 , 20 ].…”

ESCCIP-SP: Adapting an ehealth intervention for spanish-speaking parents of children with cancer.

“…A translated version of Bright Ideas, a problem-solving skills training intervention, is available and has demonstrated greater efficacy in improving problem-solving skills among Spanish-speaking mothers of children newly diagnosed with cancer when compared with English-speaking mothers (Sahler et al., 2005). In addition, two culturally and linguistically adapted interventions for Latinx parents of childhood cancer survivors have demonstrated promise in enhancing children’s academic wellbeing (Bava et al., 2017, 2018; Patel et al., 2020). This work highlights the potential to improve the experience and outcomes of Latinx PCC.…”