Purpose: Newborn screening leads to improved treatment and disease outcomes, but false-positive newborn screening results may cause distress for parents. The purpose of this study was to describe the experiences of families who receive a false-positive newborn screening result in an attempt to discover ways to help improve the newborn screening communication process for families.
methods:This was a qualitative study using two methods of data collection: in-depth, semistructured interviews and focus groups. Participants (N = 27) were parents whose children (ages 6-16 months) underwent follow-up testing after newborn screening and whose follow-up test results indicated that the newborn screening result was a false-positive.Results: Our analysis found that parents who have a false-positive newborn screening result experience five distinct stages. Most parents did not report long-term negative impacts of the experience, but some experienced some residual worry. Participants described effective provider communication as key in mitigating stress. Some parents identified the experience as leading to positive outcomes. conclusion: Identifying best practices for communication between the health care providers and parents is an essential component in improving the newborn screening process. Further research is needed to discover best practices for communication to minimize potential harm and maximize the benefits of newborn screening.Genet Med 2012:14(1):76-80
Objective: Pain assessment for nonverbal older adults with cognitive impairments or dementia presents many challenges, and it is important to determine which scales are most useful in assessing pain among this population. Method: In this review 11 observational scales for assessment of pain in older adults with dementia or cognitive impairments are evaluated in four areas: pain indicators, reliability, validity, and clinical utility of the measure. Results: Results indicate that various scales are available for assessing pain in cognitively impaired or demented older adults who are unable to report their pain, but future research should focus on further psychometric evaluations. Conclusions: Implications include that social workers should be trained as raters of pain assessment methods.
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