Conducting Research with Families of Infants Born with Neonatal Abstinence Syndrome: Recommendations from Rural Appalachia

Jaekel, Julia; Johnson, Elizabeth I.; Reyes, Lucia Miranda; Layton, Kayla N; Harris, Malinda N.

doi:10.1093/swr/svaa024

Cited by 2 publications

(7 citation statements)

References 28 publications

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“…However, we relied on carefully trained researchers and protocols designed to build trust with caregivers and community partners. 41 Another limitation to this study is the inability to conduct member checks due to the geographical and financial barriers of our participants. A strength of this study is that our interviewers self-identified as women, which may have increased trust and rapport, creating a more comfortable environment for our participants.…”

Section: Discussionmentioning

confidence: 99%

“…These exclusion criteria were chosen due to documented confounding mechanisms with regard to long-term infant development. 41 …”

Section: Methodsmentioning

confidence: 99%

“…Because our participants did not have any previous relationships with our interviewers, an important step taken during data collection was to have each infant’s designated neonatal nurse introduce our interviewers to caregivers who met criteria for our study. 41 The neonatal nurses explained the goals and tasks of the study to the participants and then asked whether our interviewer was allowed to talk with them. Once a prospective participant agreed to meet the interviewer, the interviewer would introduce herself and explain the study, goals, and their position within the study.…”

Section: Methodsmentioning

confidence: 99%

“…These exclusion criteria were chosen due to documented confounding mechanisms with regard to long-term infant development. 41 Due to the vulnerability with regard to contextual and psychosocial risk factors and uniqueness of this population, the research team participated in cultural sensitivity training and steps to recruit participants. 41 Our recruitment hours were adapted to best fit the schedules of this vulnerable population and were unconventional to what we see in traditional research.…”

Section: Methodsmentioning

confidence: 99%

“…41 Due to the vulnerability with regard to contextual and psychosocial risk factors and uniqueness of this population, the research team participated in cultural sensitivity training and steps to recruit participants. 41 Our recruitment hours were adapted to best fit the schedules of this vulnerable population and were unconventional to what we see in traditional research. Our research team regularly went to the NICU from 9:00 to 11:00 p.m. because we learned that caregivers were more likely to visit their infants at these times due to structural and geographical barriers such as lack of transportation.…”

Section: Methodsmentioning

confidence: 99%

See 4 more Smart Citations

Contextual risk and psychosocial profiles of opioid-using mothers: A mixed-methods study

Beltrán-Arzate

Hodson

Tes

et al. 2021

Womens Health (Lond Engl)

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Introduction: There is an increase in cases of mothers using opioids during pregnancy in the United States but research investigating mothers’ psychosocial environments along with individual variability among this high-risk group of women is scarce. Methods: This mixed-methods study aims to examine the complex interplay of contextual risks and experiences of opioid-using mothers. A sample of 50 opioid-using biological mothers of infants diagnosed with neonatal opioid withdrawal syndrome (NOWS) were studied using a set of standardized and open-ended questions, along with medical records extraction. Results: A high-risk subgroup of 36 mothers was identified using cluster analysis, characterized by a distinct profile of psychosocial risk. Thematic content analysis revealed four themes: (1) barriers to communication and mistrust of health professionals, (2) limitations of access to health care and the amplification of disadvantages related to COVID-19, (3) lifelong consequences of adverse childhood experiences (ACEs), and (4) intimate partner violence and its influence on drug use. Conclusion: Our findings highlight important information toward health services provision for opioid-using women of childbearing age. Efforts to reduce opioid usage in mothers need to consider psychosocial and contextual risks.

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Section: Discussionmentioning

confidence: 99%

“…These exclusion criteria were chosen due to documented confounding mechanisms with regard to long-term infant development. 41 …”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 3 more Smart Citations

Contextual risk and psychosocial profiles of opioid-using mothers: A mixed-methods study

Beltrán-Arzate

Hodson

Tes

et al. 2021

Womens Health (Lond Engl)

Self Cite

View full text Add to dashboard Cite

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Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board

Garcia

Fortney

Gerhardt

et al. 2023

Advances in Neonatal Care

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Background: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included. However, previous research has utilized the standard translation–backtranslation method with which problems have been noted. Purpose: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. Methods: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. Results: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. Implications for Practice and Research: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.

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Conducting Research with Families of Infants Born with Neonatal Abstinence Syndrome: Recommendations from Rural Appalachia

Cited by 2 publications

References 28 publications

Contextual risk and psychosocial profiles of opioid-using mothers: A mixed-methods study

Contextual risk and psychosocial profiles of opioid-using mothers: A mixed-methods study

Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board

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