In their own words: developing the Parent Experiences Questionnaire following neonatal brain injury using participatory design

References

• Kurinczuk JJ, White-Koning M, Badawi N. Epidemiology of neonatal encephalopathy and hypoxic-ischaemic encephalopathy. Early Hum Dev. 2010;86:329–38. doi:10.1016/j.earlhumdev.2010.05.010.
   PubMed Web of Science ®Google Scholar
• Lynch JK, Han CJ. Pediatric stroke: what do we know and what do we need to know? Semin Neurol. 2005;25(4):410–23. doi:10.1055/s-2005-923535.
   PubMed Web of Science ®Google Scholar
• Dimitropoulos A, McQuillen PS, Sethi V, Moosa A, Chau V, Xu D, Brant R, Azakie A, Campbell A, Barkovich JA, et al. Brain injury and development in newborns with critical congenital heart disease. Neurology. 2013;81(3):241–48. doi:10.1212/WNL.0b013e31829bfdcf.
   PubMed Web of Science ®Google Scholar
• Boat TF, Filigno S, Amin RS. Wellness for families of children with chronic health disorders. JAMA Pediatr. [Internet]. 2017;41(6):643–50. doi:10.1001/jamapediatrics.2017.1682.
   Web of Science ®Google Scholar
• Spittle A, Orton J, Anderson P, Boyd R, Doyle LW. Early developmental intervention programmes post-hospital discharge to prevent motor and cognitive impairments in preterm infants. Cochrane Database Syst Rev. [Internet]. 2012;12(12):CD005495. http://www.ncbi.nlm.nih.gov/pubmed/23235624.
   PubMed Web of Science ®Google Scholar
• Wade SL, Yeates KO, Borawski EA, Taylor GH, Drotar D, Stancin T. The relationship of caregiver coping to family outcomes during the initial year following pediatric trumatic injury. J Consult Clin Psychol. 2001;69(3):406–15. doi:10.1037/0022-006X.69.3.406.
   PubMed Web of Science ®Google Scholar
• Jackson AC, Frydenberg E, Liang RP-T, Higgins RO, Murphy BM. Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol. [Internet]. 2015;36(4):695–712. http://www.ncbi.nlm.nih.gov/pubmed/25618163. doi:10.1007/s00246-015-1121-9.
   PubMed Web of Science ®Google Scholar
• Rodriguez EM, Murphy L, Vannatta K, Gerhardt CA, Young-Saleme T, Saylor M, Bemis H, Desjardins L, Dunn MJ, Compas BE. Maternal coping and depressive symptoms as predictors of mother-child communication about a child’s cancer. J Pediatric Psychology. 2015;41(3):329–39.
   PubMed Web of Science ®Google Scholar
• Pousada M, Guillamón N, Hernández-Encuentra E, Muñoz E, Redolar D, Boixadós M, Gomez-Zuniga B. Impact of caring for a child with cerebral palsy on the quality of life of parents: a systematic review of the literature. J Dev Phys Disabil. 2013;25(5):545–77. doi:10.1007/s10882-013-9332-6.
   Web of Science ®Google Scholar
• Wade SL, Cassedy AE, Shultz EL, Zang H, Zhang N, Kirkwood MW, Terry S, Yeates KO, Taylor GH. Randomized clinical trial of online parent training for behavior problems after early brain injury. J Am Acad Child Adolesc Psychiatry. [Internet]. 2017;56(11):930–939.e2. http://linkinghub.elsevier.com/retrieve/pii/S0890856717316611. doi:10.1016/j.jaac.2017.09.413.
   PubMed Web of Science ®Google Scholar
• Tyerman E, Eccles FJR, Gray V. The experiences of parenting a child with an acquired brain injury: a meta-synthesis of the qualitative literature. Brain Inj. [Internet]. Taylor & Francis. 2017;31(12):1–11. https://www.tandfonline.com/doi/full/10.1080/02699052.2017.1341999. doi:10.1080/02699052.2017.1358397.
   PubMed Web of Science ®Google Scholar
• Heringhaus A, Blom MD, Wigert H. Becoming a parent to a child with birth asphyxia-From a traumatic delivery to living with the experience at home. Int J Qual Stud Health Well-Being. 2013;8(1):1–13. doi:10.3402/qhw.v8i0.20539.
   PubMed Web of Science ®Google Scholar
• Allen Ann K. Parent and provider decision-making for infants with HIE. J Pregnancy Child Heal. 2014;1(1):1–10.
   Google Scholar
• Bonner MJ, Hardy KK, Guill AB, McLaughlin C, Schweitzer H, Carter K. Development and validation of the parent experience of child illness. J Pediatr Psychol. 2006;31(3):310–21. doi:10.1093/jpepsy/jsj034.
   PubMed Web of Science ®Google Scholar
• Mishel MH. Parents’ perception of uncertainty concerning their hospitalized. Child Nursing Res. 1983;32(6):324–30.
   PubMed Web of Science ®Google Scholar
• Stein REK, Jessop D. The impact on family scale revisited: further psychometric data. J Dev Behav Pediatr. 2003;24(1):9–16. doi:10.1097/00004703-200302000-00004.
   PubMed Web of Science ®Google Scholar
• Beecham J, Knapp M. Costing psychiatric interventions. London: Gaskell, 2001.
   Google Scholar
• Adams D, Handley L, Simkiss D, Walls E, Jones A, Knapp M, Romeo R, Oliver C. Service use and access in young children with an intellectual disability or global developmental delay: associations with challenging behaviour. J Intellect Dev Disabil. 2016;43(2):1–10.
   Web of Science ®Google Scholar
• Bemister TB, Brooks BL, Kirton A. Development, reliability, and validity of the alberta perinatal stroke project parental outcome measure. Pediatr Neurol Elsevier Inc. 2014;51(1):43–52. doi:10.1016/j.pediatrneurol.2014.01.052.
   PubMed Web of Science ®Google Scholar
• Kirton A, Westmacott R, deVeber G. Pediatric stroke: rehabilitation of focal injury in the developing brain. NeuroRehabilitation. 2007;22(5):371–82.
   PubMed Web of Science ®Google Scholar
• Racine E, Bell E, Farlow B, Miller S, Payot A, Rasmussen LA, Shevell M, Thomson D, Wintermark P. The “ouR-HOPE” approach for ethics and communication about neonatal neurological injury. Dev Med Child Neurol. 2016;59(2):125–35. doi:10.1111/dmcn.13343.
   PubMed Web of Science ®Google Scholar
• Illes J, Moser MA, McCormick JB, Racine E, Blakeslee S, Caplan A, Hayden EC, Ingram J, Lohwater T, McKnight P, et al. Neurotalk: improving the communication of neuroscience research. Nat Rev Neurosci. 2010;11(1):61–69. doi:10.1038/nrn2773.
   PubMed Web of Science ®Google Scholar
• Moore M, Kiatchai T, Ayyagari RC, Vavilala MS. Targeted areas for improving health literacy after traumatic brain injury. Brain Inj. [Internet]. 2017;31(13–14):1876–81. doi:10.1080/02699052.2017.1346291.
   PubMed Web of Science ®Google Scholar
• Drennan J. Cognitive interviewing: verbal data in the design and pretesting of questionnaires. J Adv Nurs. 2003;42(1):57–63. doi:10.1046/j.1365-2648.2003.02579.x.
   PubMed Web of Science ®Google Scholar
• Bemister TB, Brooks BL, Dyck RH, Kirton A. Parent and family impact of raising a child with perinatal stroke. BMC Pediatr. 2014;14(1):182. doi:10.1186/1471-2431-14-82.
   PubMed Web of Science ®Google Scholar
• Fay TB, Yeates KO, Wade SL, Drotar D, Stancin T, Taylor HG. Predicting longitudinal patterns of functional deficits in children with traumatic brain injury. Neuropsychology. 2009;23(3):271–82. doi:10.1037/a0014936.
   PubMed Web of Science ®Google Scholar
• Basu AP, Pearse JE, Baggaley J, Watson RM, Rapley T. Participatory design in the development of an early therapy intervention for perinatal stroke. BMC Pediatr. [Internet]. 2017;17(1):33. http://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-017-0797-9. doi:10.1186/s12887-017-0969-7.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Heal. 2010;33(1):77–84.
   PubMed Web of Science ®Google Scholar
• Connor-Smith JK, Compas BE, Wadsworth ME, Thomsen H, Saltzman H. Responses to stress in adolescence: measurement of coping and involuntary stress responses. J Consult Clin Psychol. 2000;68(6):976–92. doi:10.1037/0022-006X.68.6.976.
   PubMed Web of Science ®Google Scholar
• Lovibond PF, Lovibond SH. The structure of negative meotional states: comparison of the depression anxiety stress scales (DASS) with the beck depression and anxiety inventories. J Res Ther. 1995;33(3):335–43. doi:10.1016/0005-7967(94)00075-U.
   PubMed Web of Science ®Google Scholar
• Bruininks RH, Woodcock RW, Weatherman RF, Hill SK. Scales of independent behavior - early developmental form. Rolling Meadows, Illinois: Riverside Publishing Company; 1984.
   Google Scholar
• Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)-A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81. doi:10.1016/j.jbi.2008.08.010.
   PubMed Web of Science ®Google Scholar
• Statistics Canada. Literacy skills of Canadians across the ages: Fewer low achievers. Fewer high achievers. 2003; 4. Report No:6. Available from: http://www.statscan.gc.ca/pub/81-004-x/2007006/article/10528-eng.htm
   Google Scholar
• Jordan J, Linden MA. “It”s like a problem that doesn’t exist’: the emotional well-being of mothers caring for a child with brain injury. Brain Inj. 2013;27(9):1063–72. doi:10.3109/02699052.2013.794962.
   PubMed Web of Science ®Google Scholar
• McKinlay A, Linden M, DePompei R, Aaro Jonsson C, Anderson V, Braga L, Castelli E, de Koning P, Hawley CA, Hermans E, et al. Service provision for children and young people with acquired brain injury: practice recommendations. Brain Inj. 2016;30(13–14):1656–64. doi:10.1080/02699052.2016.1201592.
   PubMed Web of Science ®Google Scholar
• Wade SL, Taylor HG, Yeates KO, Drotar D, Stancin T, Minich NM, Schluchter M. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31(10):1072–83. doi:10.1093/jpepsy/jsj077.
   PubMed Web of Science ®Google Scholar
• Brown FL, Whittingham K, Boyd R, Sofronoff K. A systematic review of parenting interventions for traumatic brain injury: child and parent outcomes. J Head Trauma Rehabil. 2013;28(5):349–60. doi:10.1097/HTR.0b013e318245fed5.
   PubMed Web of Science ®Google Scholar
• Bemister TB, Brooks BL, Dyck RH, Kirton A. Predictors of caregiver depression and family functioning after perinatal stroke. BioMed Cent Pediatr. 2015;15:75.
   PubMed Web of Science ®Google Scholar
• Greenham M, Hearps S, Gomes A, Rinehart N, Gonzalez L, Gordon A, Mackay M, Lo W, Yeates K. Environmental contributions to social and mental health outcomes following pediatric stroke. Dev Neuropsychol. 2015;40(6):348–62. doi:10.1080/87565641.2015.1095191.
   PubMed Web of Science ®Google Scholar
• Als H, Duffy FH, McAnulty G, Butler SC, Lightbody L, Kosta S, Weisenfeld N, Robertson R, Parad R, Ringer S, et al. NIDCAP improves brain function and structure in preterm infants with severe intrauterine growth restriction. J Perinatol. 2012;32(10):797–803. doi:10.1038/jp.2011.201.
   PubMed Web of Science ®Google Scholar
• Milgrom J, Newnham C, Anderson PJ, Doyle LW, Gemmill AW, Lee K, Hunt RW, Bear M, Inder T. Early sensitivity training for parents of preterm infants: impact on the developing brain. Pediatr Res. 2010;67(3):330–35. doi:10.1203/PDR.0b013e3181cb8e2f.
   PubMed Web of Science ®Google Scholar
• Vinall J, Miller S, Synnes A, Grunau RE. Parent behaviors moderate the relationship between neonatal pain and internalizing behaviors at 18 months corrected age in children born very prematurely. Pain. 2013;154(9):1831–39. doi:10.1016/j.pain.2013.05.050.
   PubMed Web of Science ®Google Scholar
• Brown FL, Whittingham K, Boyd RN, McKinlay L, Sofronoff K. Does stepping stones triple P plus acceptance and commitment therapy improve parent, couple, and family adjustment following paediatric acquired brain injury? A randomised controlled trial. Behav Res Ther. 2015;73:58–66. doi:10.1016/j.brat.2015.07.001.
   PubMed Web of Science ®Google Scholar
• Whittingham K, Sanders M, McKinlay L, Boyd RN. Interventions to reduce behavioral problems in children with cerebral palsy: an RCT. Pediatrics. [Internet]. 2014;133(5):e1249–57. http://pediatrics.aappublications.org/cgi/doi/10.1542/peds.2013-3620. doi:10.1542/peds.2013-2112.
   PubMed Web of Science ®Google Scholar
• Guest G, Bunce A, Johnson L. How many interviews are enough?. Field Methods. 2006;18(1):59–82. doi:10.1177/1525822X05279903.
   Web of Science ®Google Scholar