Objective: The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.Study Design: Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses. Result:We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.Conclusions: Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or teambased approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.
This qualitative study surveyed caregivers regarding their perspectives on the benefits of, challenges with, and suggestions for improving telehealth during the COVID-19 pandemic. Caregivers who had the responsibility for caring for at least one child aged under 18 years of age in Genesee County, MI, participated. The caregivers were biological parents, stepparents, foster parents, adoptive parents, and guardians. A total of 105 caregivers completed a survey with open-ended questions via Qualtrics. Two independent coders developed themes based on the responses using grounded theory. Participants were primarily biological parents and non-Hispanic White and African Americans. According to the participants, the benefits of telehealth included prevention of exposure to the COVID-19 virus, quality communication with physicians, savings in travel time, and cost-effective methods to receive care. The challenges included a lack of in-person interaction, fear of compromised confidentiality, and the potential for misdiagnosis. Suggestions for improvement by caregivers included increasing access to telehealth for poorer families, offering a media educational campaign to promote telehealth use, and creating a universal platform to share patient information. Future studies may test the effectiveness of interventions such as those suggested by caregivers in this study to improve telehealth.
Background and Purpose: Health communication interventions to successfully promote satisfaction with care among parents in the Neonatal Intensive Care Unit (NICU) are limited. This study investigated strategies for effective health communication in the NICU through focus groups with parents and nurses, and individual interviews with neonatologists. Methods: Eight parents, seventeen nurses, and three neonatologists from one NICU in Genesee County, Michigan participated. Results: Parents expressed a preference for daily, face-to-face communication with the physician. They recommended the use of visual aids to help with understanding infants� conditions. One such aid would be a baby diary to serve as the infant�s daily progress report for the parent to review during the visit. A communication strategy used by nurses was providing parents with the most up-to-date information in an approachable, reassuring manner. Physicians suggested interactive communication practice sessions as strategies to increase effective communication between physicians and parents. Physician-to-nurse strategies consisted of building trustworthy relationships by holding scientific forums, discussing health care disagreements, and accepting differing opinions. Conclusion: Future research may assess the influence of strategies recommended in this study on parental satisfaction with care and adherence to treatment recommendations as well as on health care provider self-efficacy.
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