Adaptation of a Multimedia Chemotherapy Educational Intervention for Latinos: Letting Patient Narratives Speak for Themselves.

This study aims to adapt a video-based, multimedia chemotherapy educational intervention to meet the needs of US Latinos with advanced gastrointestinal malignancies. A five-step hybrid adaptation process involved (1) creating a multidisciplinary team with diverse Latino subject experts, (2) appraising the parent intervention, (3) identifying key cultural considerations from a systematic literature review and semi-structured Latino patient/caregiver interviews, (4) revising the intervention, highlighting culturally relevant themes through video interviews with Latino cancer patients, and (5) target population review with responsive revisions. We developed a suite of videos, booklets, and websites available in English and Spanish, which convey the risks and benefits of common chemotherapy regimens. After revising the English materials, we translated them into Spanish using a multi-step process. The intervention centers upon conversations with 12 Latino patients about their treatment experiences; video clips highlight culturally relevant themes (personalismo, familismo, faith, communication gaps, prognostic information preferences) identified during the third adaptation step. The adapted intervention materials included a new section on coping, and one titled "how to feel the best you can feel," which reviews principles of side effect management, self-advocacy, proactive communication, and palliative care. Ten Latinos with advanced malignancies reviewed the intervention and found it to be easily understandable, relatable, and helpful. A five-step hybrid model was successful in adapting a chemotherapy educational intervention for Latinos. Incorporation of video interviews with Latino patients enabled the authentic representation of salient cultural themes. Use of authentic patient narratives can be useful for cross-cultural intervention adaptations.

Rationale and design of Children's Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States.

BACKGROUND: The study purpose is to describe trajectories of financial distress for parents of children (ages 1-14.9 years) with newly diagnosed acute lymphoblastic leukemia (ALL). The secondary aim is to identify multilevel factors (child, parent, household, treating institution) that influence change in financial distress over time. METHODS: The study uses a prospective cohort design, repeated measurements, and mixed methods. The settings are Children's Oncology Group (COG) institutions participating in the National Cancer Institute Community Oncology Research Program (NCORP). Eligible participants are English- and/or Spanish-speaking parents or legal guardians (hereafter "parents") of index children. Parents are asked to complete a survey during their child's induction (T1) and maintenance therapy (T2), and near treatment completion (T3). Study surveys include items about (a) the child's cancer and clinical course, (b) parental socio-economic status, financial distress and financial coping behaviors, and (c) household material hardships. At least 15 parents will be invited to participate in an optional semi-structured interview. NCORP institutions that enroll at least one parent must complete an annual survey about institution resources that could influence parental financial distress. DISCUSSION: The results will inform future interventions to mitigate financial distress for parents of children diagnosed with ALL and could be instructive beyond this disease group. TRIAL REGISTRATION: This trial was initially registered with the NCI Clinical Trial Reporting Program ID: NCI-2021-03,567 on June 16, 2021. The study can be found on clinicaltrials.gov, Identifier NCT04928599 .

Tele-mental health intervention for caregivers of children on home ventilation: A randomized control trial.

AIM: This study aims to evaluate a Tele-P cognitive behavioural intervention (CBT) to promote the emotional functioning (i.e. reduce anxiety, depression and social isolation) and improve the quality of life (QoL) of caregivers of children who are ventilator dependent at home. BACKGROUND: There is an urgent need for support of parents with technology-dependent children. Research shows that the parents of children whose chronic illness require assisted-technology experience significant emotional stress, potential gaps in social isolation, and social isolation leading to lower quaility of life, unhealthy family functioning, and negative psychological consequences. RESULTS: Participation in a Tele-P intervention significantly reduced caregivers' anxiety, depression and fatigue, and reduction was sustained in a 4 week follow-up period. There was no significant change in social isolation. CONCLUSION: Findings demonstrate preliminary efficacy of an innovative Tele-P intervention on outcomes of anxiety, depression and fatigue in an at-risk group of caregivers. Although the intervention did not improve self-reported social isolation, using technology in combination with established psychological support is an efficient way to better equip our mental health intervention systems to serve vulnerable populations.

"You never stop being a social worker:" Experiences of pediatric hospital social workers during the acute phase of the COVID-19 pandemic.

The COVID-19 pandemic has wrought widespread devastation upon children and families across the United States, widening existing health disparities and inequities that disproportionately affect communities of color. In health care settings specifically, social work is the key workforce tasked with responding to patient and family psychosocial needs, both of which have increased substantially since the emergence of COVID-19. There is a need to understand ways in which hospital social workers' roles, responsibilities, and integration within interprofessional teams have evolved in response to these challenges. In this qualitative study, focus groups were conducted with 55 social workers employed across multiple settings in a large, urban, pediatric hospital in Spring 2020. Thematic analyses revealed salient superordinate themes related to the pandemic's impact on social work practice and social workers themselves, institutional facilitators and impediments to effective social work and interprofessional practice, and social work perspectives on future pandemic recovery efforts. Within each theme, a number of interrelated subthemes emerged elucidating nuances of telehealth adoption in the context of remote work, the salience of social determinants of health, and the critical role of social work in social justice oriented pandemic preparedness and response efforts. Implications for interprofessional practice and the profession at large are discussed.