Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
10
pubmed:dateCreated
2010-9-23
pubmed:abstractText
The identification of healthy carriers by newborn screening programmes raises questions about how and when the carrier results will be conveyed to child. There is currently a lack of information concerning how best to convey carrier information to children. This is a serious gap in the literature and practice. This study examined genetic counsellors' experiences of counselling children to explore how to support and inform children about their carrier result. Practising members of the United Kingdom (UK) Association of Genetic Nurses and Counsellors took part in semi-structured telephone interviews. Respondents described the communication process and identified barriers and facilitators of communication. Age, illness experience and maturity were variously discussed as facilitators; all of which are integral to psychological theories of children's understanding of illness. Adaptive family communication, school tuition and educational materials were also seen as influencing counselling efficacy. Relevant materials that children could keep were also seen as important to enhance children's autonomy. Yet, such resources were rare, constituting a barrier to communication. Counsellors reported communication was further impeded by maladaptive family communication and resistance from children to engaging in counselling. By exploring the facilitators and barriers inherent in communicating genetic information to children, guidance can be offered to counsellors, researchers and parents. This study indicates that some factors (eg illness experiences) previously identified by psychological theories may act in complex ways within this setting. Importantly, the factors identified as being most influential when communicating with children about genetics are amenable to change through interventions, support and training.
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Oct
pubmed:issn
1476-5438
pubmed:author
pubmed:issnType
Electronic
pubmed:volume
18
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
1090-4
pubmed:dateRevised
2011-10-3
pubmed:meshHeading
pubmed-meshheading:20531440-Child, pubmed-meshheading:20531440-Child, Preschool, pubmed-meshheading:20531440-Child of Impaired Parents, pubmed-meshheading:20531440-Communication, pubmed-meshheading:20531440-Communication Barriers, pubmed-meshheading:20531440-Cross-Sectional Studies, pubmed-meshheading:20531440-Family, pubmed-meshheading:20531440-Family Relations, pubmed-meshheading:20531440-Family Therapy, pubmed-meshheading:20531440-Genetic Counseling, pubmed-meshheading:20531440-Genetic Testing, pubmed-meshheading:20531440-Great Britain, pubmed-meshheading:20531440-Health Care Surveys, pubmed-meshheading:20531440-Health Communication, pubmed-meshheading:20531440-Health Personnel, pubmed-meshheading:20531440-Humans, pubmed-meshheading:20531440-Northern Ireland, pubmed-meshheading:20531440-Nurses, pubmed-meshheading:20531440-Parents, pubmed-meshheading:20531440-Patient Education as Topic, pubmed-meshheading:20531440-Professional-Family Relations, pubmed-meshheading:20531440-Stress, Psychological
pubmed:year
2010
pubmed:articleTitle
A qualitative study exploring genetic counsellors' experiences of counselling children.
pubmed:affiliation
School of Psychological Sciences, University of Manchester, Manchester, UK. fiona.ulph@manchester.ac.uk
pubmed:publicationType
Journal Article, Research Support, Non-U.S. Gov't