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Parental decision-making and acceptance of newborn bloodspot screening: an exploratory study
Stuart G Nicholls1, Kevin W Southern
1Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Ontario, Canada.
Insights
Parental decisions about newborn bloodspot screening are influenced by personal experiences and perceived choice, not just medical information. Healthcare professional relationships are key to informed decision-making about this vital public health measure.
Area of Science:
- Public Health
- Genetics
- Parental Decision-Making
Background:
- Newborn bloodspot screening is a standard public health practice.
- Limited understanding exists regarding parental decision-making processes for newborn screening.
- Expanding screening panels increase information complexity for parents.
Purpose of the Study:
- To explore factors influencing parental decisions regarding newborn screening.
- To understand the role parents play in the newborn screening decision-making process.
Main Methods:
- Qualitative thematic evaluation.
- Semi-structured interviews with parents of recently screened newborns in England.
Main Results:
- Eighteen interviews were conducted with first-time and experienced parents.
- Seven factors influenced decisions: experience, attitudes to medicine, information-seeking, perceived knowledge, attitudes to screening, perceived choice, and perceived decisional quality.
Conclusions:
- Parental decisions are shaped by contextual factors like personal experience and perceived choice, beyond just screening content.
- Relationships with healthcare professionals significantly impact information gathering, screening attitudes, and decision deliberation.
Objective:
Newborn bloodspot screening is an internationally established public health measure. Despite this, there is a paucity of information relating to the decision-making process that parents go through when accepting newborn screening. This is important as screening panels are expanding; potentially leading to an increasing amount of complex information. This study sought to understand the factors that influence parental decisions and roles they play in the decision-making process.
Patients And Methods:
Qualitative thematic evaluation of semi structured interviews with parents whose children had recently undergone newborn screening in the Merseyside and Cheshire region of England, UK.
Results:
Eighteen interviews with first time parents (n = 12) and those with previous children (n = 6). Seven factors were identified as being either explicitly or implicitly related to parental decision-making: Experience, Attitudes to medicine, Information-seeking behaviour, Perceived knowledge, Attitudes to screening, and Perceived choice, all of which ultimately impact on Perceived decisional quality.
Conclusions:
These results indicate that while content is important, other contextual factors such as personal experience, perceived choice, and general attitudes toward medicine, are also highly influential. In particular, relationships with key healthcare professionals are central to information collection, attitudes toward screening, and the level of deliberation that is invested in decisions to accept newborn bloodspot screening.
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