Positive parental attitudes to participating in research involving newborn screened infants with CF

Journal of Cystic Fibrosis

Volumn 12, Issue 3, 2013, Pages 234-240

  Chudleigh, Jane ^a   Hoo, Ah Fong ^a   Ahmed, Deeba ^b   Prasad, Ammani ^a   Sheehan, Denise ^a   Francis, Jackie ^c   Buckingham, Sarah ^d   Cowlard, Jacqui ^e   Thia, Lena ^b   Nguyen, The Thanh Diem ^b   Stocks, Janet ^b  

^a GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

^c ROYAL BROMPTON AND HAREFIELD NHS FOUNDATION TRUST   (United Kingdom)

^d KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST   (United Kingdom)

^e BARTS HEALTH NHS TRUST   (United Kingdom)

Author keywords

Newborn screening; Pulmonary function tests; Recruitment

Indexed keywords

ARTICLE; BRONCHOSCOPY; CONTROLLED STUDY; FEASIBILITY STUDY; FEMALE; HIGH RESOLUTION COMPUTER TOMOGRAPHY; HUMAN; INFANT; LUNG FIBROSIS; LUNG FUNCTION TEST; LUNG LAVAGE; MAJOR CLINICAL STUDY; MALE; NEWBORN; NEWBORN SCREENING; OBSERVATIONAL STUDY; PARENTAL ATTITUDE; QUESTIONNAIRE; SOCIAL PARTICIPATION;

ATTITUDE; BIOMEDICAL RESEARCH; CONSUMER PARTICIPATION; CYSTIC FIBROSIS; FEASIBILITY STUDIES; HUMANS; INFANT; INFANT, NEWBORN; NEONATAL SCREENING; PARENTS; PATIENT SELECTION; QUESTIONNAIRES;

EID: 84876967635     PISSN: 15691993     EISSN: 18735010     Source Type: Journal    
DOI: 10.1016/j.jcf.2012.09.001     Document Type: Article

References (27)

1. Parker H., Qureshi N., Ulph F., Kai J. Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: a qualitative study of current practice and policy challenges. BMC Health Serv Res 2007, 7:203.
2. Kai J., Ulph F., Cullinan T., Qureshi N. Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice. Health Technol Assess Nov 2009, 13(57):1-82. [iii].
3. Jedlicka-Kohler I., Gotz M., Eichler I. Parents' recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics Feb 1996, 97(2):204-209.
4. Morley C.J., Lau R., Davis P.G., Morse C. What do parents think about enrolling their premature babies in several research studies?. Arch Dis Child Fetal Neonatal Ed May 2005, 90(3):F225-F228.
5. Stenson B.J., Becher J.C., McIntosh N. Neonatal research: the parental perspective. Arch Dis Child Fetal Neonatal Ed Jul 2004, 89(4):F321-F323.
6. Ward F.R. Parents' views of involvement in concurrent research with their neonates. J Empir Res Hum Res Ethics Jun 2010, 5(2):47-55.
7. Oberle K., Singhal N., Huber J., Burgess E. Development of an instrument to investigate parents' perceptions of research with newborn babies. Nurs Ethics Jul 2000, 7(4):327-338.
8. Hoehn K.S., Nathan A., White L.E., Ittenbach R.F., Reynolds W.W., Gaynor J.W., et al. Parental perception of time and decision-making in neonatal research. J Perinatol Jul 2009, 29(7):508-511.
9. Hoehn K.S., Wernovsky G., Rychik J., Gaynor J.W., Spray T.L., Feudtner C., et al. What factors are important to parents making decisions about neonatal research?. Arch Dis Child Fetal Neonatal Ed May 2005, 90(3):F267-F269.
10. Tait A.R., Voepel-Lewis T., Malviya S. Participation of children in clinical research: factors that influence a parent's decision to consent. Anesthesiology Oct 2003, 99(4):819-825.
11. Tait A.R., Voepel-Lewis T., Malviya S. Factors that influence parents' assessments of the risks and benefits of research involving their children. Pediatrics Apr 2004, 113(4):727-732.
12. Sammons H.M., Atkinson M., Choonara I., Stephenson T. What motivates British parents to consent for research? A questionnaire study. BMC Pediatr 2007, 7:12.
13. Gattuso J., Hinds P., Tong X., Srivastava K. Monitoring child and parent refusals to enrol in clinical research protocols. J Adv Nurs Feb 2006, 53(3):319-326.
14. Lum S., Hoo A.F., Hulskamp G., Wade A., Stocks J. Potential misinterpretation of infant lung function unless prospective healthy controls are studied. Pediatr Pulmonol Sep 2010, 45(9):906-913.
15. Beardsmore C.S. Ethical issues in lung function testing in children. Paediatr Respir Rev Dec 2000, 1(4):342-346.
16. Stocks J., Modi N., Tepper R. Need for healthy control subjects when assessing lung function in infants with respiratory disease. Am J Respir Crit Care Med Dec 1 2010, 182(11):1340-1342.
17. Nguyen T.T., Hoo A.F., Lum S., Wade A., Thia L.P. New reference equations to improve interpretation of infant lung function. Pediatr Pulmonol Sep 2012, 10.1002/ppul.22656.
18. Lum S., Gustafsson P., Ljungberg H., Hulskamp G., Bush A., Carr S.B., et al. Early detection of cystic fibrosis lung disease: multiple-breath washout versus raised volume tests. Thorax Apr 2007, 62(4):341-347.
19. Stocks J., Godfrey S., Beardsmore C., Bar-Yishay E., Castile R. Plethysmographic measurements of lung volume and airway resistance. ERS/ATS Task Force on Standards for Infant Respiratory Function Testing. European Respiratory Society/ American Thoracic Society. Eur Respir J 2001 Feb, 17(2):302-312.
20. ATS/ERS statement: raised volume forced expirations in infants: guidelines for current practice. Am J Respir Crit Care Med Dec 1 2005, 172(11):1463-1471.
21. Ranganathan S.C., Dezateux C., Bush A., Carr S.B., Castle R.A., Madge S., et al. Airway function in infants newly diagnosed with cystic fibrosis. Lancet Dec 8 2001, 358(9297):1964-1965.
22. Aurora P., Stanojevic S., Wade A., Oliver C., Kozlowska W., Lum S., et al. Lung clearance index at 4 years predicts subsequent lung function in children with cystic fibrosis. Am J Respir Crit Care Med Mar 15 2011, 183(6):752-758.
23. Hoo A.F., Thia L.P., Nguyen T.T., Bush A., Chudleigh J., Lum S., et al. Lung function is abnormal in 3-month-old infants with cystic fibrosis diagnosed by newborn screening. Thorax Oct 2012, 67(10):874-881.
24. Mott L.S., Park J., Murray C.P., Gangell C.L., de Klerk N.H., Robinson P.J., et al. Progression of early structural lung disease in young children with cystic fibrosis assessed using CT. Thorax Jun 2012, 67(6):509-516.
25. Gammelgaard A., Knudsen L.E., Bisgaard H. Perceptions of parents on the participation of their infants in clinical research. Arch Dis Child Dec 2006, 91(12):977-980.
26. Hayman R.M., Taylor B.J., Peart N.S., Galland B.C., Sayers R.M. Participation in research: informed consent, motivation and influence. J Paediatr Child Health Feb 2001, 37(1):51-54.
27. Chantler T.E., Lees A., Moxon E.R., Mant D., Pollard A.J., Fiztpatrick R. The role familiarity with science and medicine plays in parents' decision making about enrolling a child in vaccine research. Qual Health Res Mar 2007, 17(3):311-322.