Engaging Latino Adolescent and Young Adult (AYA) Cancer Survivors in Their Care: Piloting a Photonovela Intervention

Casillas, Jacqueline; Schwartz, Lindsay F.; Gildner, Jennifer; Crespi, Catherine M.; Ganz, Patricia A.; Kahn, Katherine L.; Stuber, Margaret L.; Bastani, Roshan; Morales, Sonia; Quintana, Karla; Gonzalez, Amri; Casas, Esther C.; Barboa, Elvia

doi:10.1007/s13187-020-01724-2

Cited by 12 publications

(30 citation statements)

References 23 publications

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“…Five studies met the inclusion criteria and were included in the review ( Figure 1 ); four studies were conducted in the U.S., and one was conducted in Brazil. The U.S. study locations were Arizona (Badger et al, 2013 , 2020 ; Crane et al, 2021 ) and California (Casillas et al, 2021 ). The Crane study specified that participants also came from the U.S.-Mexican border (Crane et al, 2021 ).…”

Section: Resultsmentioning

confidence: 99%

“…The Brazilian location was São Paulo (Mourao et al, 2017 ). Three studies were RCTs (Randomized Controlled Trials; Badger et al, 2013 , 2020 ; Crane et al, 2021 ) and two studies used a quasi-experimental design (i.e., single group pre- and post-test assessments; Mourao et al, 2017 ; Casillas et al, 2021 ). Three studies were pilot studies (Badger et al, 2013 ; Casillas et al, 2021 ; Crane et al, 2021 ).…”

Section: Resultsmentioning

confidence: 99%

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Family-based psychosocial interventions for adult Latino patients with cancer and their caregivers: A systematic review

Guan

Cook²,

Xu³

et al. 2023

Front. Psychol.

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ObjectiveThis review aimed to systematically examine the characteristics and outcomes of family-based psychosocial interventions offered to adult Latino patients with cancer and their caregivers.MethodsWe searched six databases from their inception dates through June 2022. Studies were eligible for inclusion if they (1) targeted both adult Latino patients diagnosed with cancer and their adult caregivers or reported subgroup analyses of Latino patients and caregivers; (2) included family-based psychosocial interventions; (3) used randomized controlled trial (RCT) or quasi-experimental designs; and (4) were published in English, Spanish or Portuguese. Members of our multidisciplinary team assessed the risk of bias in the reviewed studies using the Cochrane Collaboration's Risk of Bias Tool.ResultsOur database searches yielded five studies. The studies were conducted in the U.S. and Brazil. Three studies were RCTs, and two used quasi-experimental designs. The sample sizes ranged from 18 to 230 patient-caregiver dyads. These studies culturally adapted the intervention contents and implementation methods and involved bilingual interventionists. The interventions had beneficial effects on multiple aspects of psychosocial outcomes for both patients and caregivers. We also identified methodological limitations in the reviewed studies.ConclusionsFindings from this systematic review help deepen our understanding of family-based psychosocial interventions for Latinos affected by cancer. The small number of psychosocial interventions focused on adult Latino cancer patients and their caregivers is concerning, considering that Latino populations are disproportionally burdened by cancer. Future research needs to design and evaluate culturally-appropriate interventions to support Latino patients and families who cope with cancer.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=274993, identifier CRD42021274993.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Family-based psychosocial interventions for adult Latino patients with cancer and their caregivers: A systematic review

Guan

Cook²,

Xu³

et al. 2023

Front. Psychol.

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“…For example, the results of a pilot study of AYA after cancer treatment supported the feasibility and acceptability of a text messaging intervention to strengthen well‐being as well as disease knowledge and health behavior (Schwartz et al, 2020). Other interventions targeting AYA have included a photonovela educational program for Latinx cancer survivors, which increased patients' confidence in their ability to manage their health care but did not increase knowledge of late effects (Casillas et al, 2020). Furthermore, an educational training program for symptom management in a slightly younger group of 10‐ to 18‐year olds with asthma (Cevik Guner & Celebioglu, 2015) resulted in increased self‐efficacy and fewer school absences compared to a control group.…”

Section: Discussionmentioning

confidence: 99%

Adolescents and young adults with neurofibromatosis type 1: A descriptive study of adaptive functioning

Struemph

Watts

Wolters

et al. 2021

American J of Med Genetics Pt A

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Neurofibromatosis type 1 (NF1) is a genetic syndrome affecting about 1 in 3500 individuals; many of those affected have plexiform neurofibroma (pNF) tumors and associated symptoms and complications. Furthermore, learning and attention problems, as well as deficits in adaptive functioning, are common, often beginning in early childhood. This study aimed to describe adaptive functioning and to examine relationships between adaptive functioning and cognitive and academic variables and level of independence among adolescents and young adults (AYA) with NF1 and pNF tumors. Fifty-five AYA aged 16-31 years participated in a series of neuropsychological evaluations while parents completed the Vineland Adaptive Behavior Scales (VABS-II) as part of a larger natural history study. Over one-third (35%) of AYA were neither in school nor employed. Mean VABS-II daily living and socialization scores were low average while mean Verbal and Performance IQ scores were average. VABS-II scores were positively correlated with processing speed, executive functioning, and working memory scores. Verbal IQ was the only significant predictor of work/school status. Identification of the correlates and predictors of adaptive functioning and life achievement can help guide healthcare providers with the early identification of risk factors and possible areas for intervention. K E Y W O R D S adaptive functioning, adolescents and young adults (AYA), NF1 1 | INTRODUCTION Research suggests that early adaptive skills in young children with neurofibromatosis type 1 (NF1) are lower than same-aged peers (Klein-Tasman et al, 2013). Adaptive behavior is commonly defined as how people meet their daily needs and navigate the expectations in their day-to-day interactions. Areas of adaptive functioning include communication, daily living skills, and socialization (Sparrow, Cicchetti, & Balla, 2005). For individuals diagnosed with NF1, these deficits continue (Cohen et al., 2020;Payne et al., 2021) and in one study worsen (Glad et al., 2020) throughout childhood and adolescence. These deficits have even been documented in the context of average cognitive abilities (Eby, Griffith, Gutmann, & Morris, 2019). Glad et al. (2020) found executive functioning in early childhood to be predictive of adaptive functioning in the school-age period.NF1 is a genetic disorder that occurs in approximately 1 out of every 2500-3500 births and is typically diagnosed in early childhood (Evans et al., 2010;Tonsgard, 2006). NF1 causes a wide variety of physical, psychosocial, and cognitive impairments, all of which may contribute to challenges in adaptive functioning, particularly during the years of transition from adolescence to young adulthood. Physical [Correction added on 24 December 2021, after first online publication: The blinded text has been replaced with "National Cancer Institute" at all occurrences in the article.]

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“…PADRES had already developed a strong rapport and trust among the Latino AYA survivor community. With their efforts, the partnership recruited a large and committed group of CAG members to partner in the creation and evaluation of different educational interventions, one of which was a photonovela, and members stayed actively engaged in the year-long project, without attrition (Casillas et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors Through Community-Partnered Participatory Research

Casillas¹,

Ganz

Kahn

et al. 2021

Journal of Participatory Research Methods

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Background Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. Objective This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Methods Research team participants included the community organization and NCI cancer center directors, research coordinators, a community liaison, and cross-training program interns. Through use of Jones’ theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. Conclusions CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

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Engaging Latino Adolescent and Young Adult (AYA) Cancer Survivors in Their Care: Piloting a Photonovela Intervention

Cited by 12 publications

References 23 publications

Family-based psychosocial interventions for adult Latino patients with cancer and their caregivers: A systematic review

Family-based psychosocial interventions for adult Latino patients with cancer and their caregivers: A systematic review

Adolescents and young adults with neurofibromatosis type 1: A descriptive study of adaptive functioning

Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors Through Community-Partnered Participatory Research

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