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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Exploring the impact on intrafamilial support systems when newborn screening programmes contact parents with an
1Division of Psychology & Mental Health, Manchester Centre for Health Psychology, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK. chloe.musa2@nhs.net.
Insights
Newborn bloodspot screening positive results significantly impact family support systems. These effects can be negative, like increased parental burden, or positive, reinforcing family bonds.
Area of Science:
- Medical screening
- Family systems psychology
- Qualitative research synthesis
Background:
- Newborn bloodspot screening is a critical diagnostic tool.
- Initial positive screening results can cause significant psychological distress to families.
- The impact on intrafamilial support systems requires further investigation.
Purpose of the Study:
- To systematically review and synthesize qualitative research on the effects of initial positive newborn bloodspot screening results on intrafamilial support.
- To understand the diverse impacts on family dynamics and support networks.
Main Methods:
- Systematic literature search of MEDLINE, PsycINFO, and CINAHL databases.
- Inclusion of qualitative studies focusing on parents receiving initial positive screen results and their impact on intrafamilial support.
- Narrative synthesis of 25 selected papers, with quality appraisal.
Main Results:
- All initial positive screen results affect intrafamilial support systems, regardless of diagnostic outcome.
- Negative impacts include parents becoming medical experts, family distancing, and doubts about future children.
- Positive impacts involve reinforced support through proactive and timely family assistance.
Conclusions:
- Initial positive newborn screening results profoundly impact family networks beyond the parent-child dyad.
- The nature of this impact (positive or negative) is complex and multifaceted.
- Further research is needed to explore strategies for better addressing these familial impacts.
Abstract:
Newborn bloodspot screening identifies babies with serious health conditions in a 2-stage process. Positive screening identifies those who need diagnostic tests. Although screening can improve physical health outcomes, research suggests that this initial screen positive stage has a profound psychological impact on families. This review systematically identifies, appraises, and synthesises the qualitative research on the impact of initial "positive screen" results on intrafamilial support systems. Studies fulfilled the inclusion criteria if they were research papers conducted with parents receiving an initial positive screen result and mentioned the impact on intrafamilial support systems. MEDLINE (Ovid), PsycINFO (Ovid) and CINAHL (EBSCO) databases were searched for qualitative research using search terms mapped onto the SPIDER framework. Title and abstracts were screened, and full texts independently reviewed by two researchers. A narrative synthesis of 25 papers was conducted and quality was appraised. All positive screen results, irrespective of diagnostic outcome, have consequences for intrafamilial support systems. Negative consequences included parents becoming the medical expert for other family members, family members becoming more distant through reducing communication, and parents questioning whether they want future children. Others experience reinforcement of strong intrafamilial support systems when family members displayed proactivity, offered reassurance, and provided adequate support in a timely manner. The synthesis findings imply screen positive results have a profound impact across family networks beyond the parent/couple dynamic, and whether this is positive or negative is complex. Further research is warranted to investigate how impact could be better addressed.
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