Skip to main content
Top
Published in: BMC Pediatrics 1/2016

Open Access 01-12-2016 | Study protocol

The experiences, unmet needs and outcomes of parents of severely injured children: a longitudinal mixed methods study protocol

Authors: Kim Foster, Kate Curtis, Rebecca Mitchell, Connie Van, Alexandra Young

Published in: BMC Pediatrics | Issue 1/2016

Login to get access

Abstract

Background

Being the parent of a severely injured child involves many stressors throughout the trauma journey. Internationally, little is known about the experiences or levels of emotional distress, parenting stress, quality of life, and resilience for parents of injured children. The aim of this study is to investigate the experiences, unmet needs and outcomes of parents of physically injured children 0–12 years over the 2 year period following injury.

Methods/design

This is a prospective longitudinal study using an embedded mixed methods design. This design has a primary qualitative strand which incorporates supplementary quantitative data on child quality of life, and parental quality of life, parenting stress, emotional distress, and resilience at four time points; the acute hospitalisation phase, and at 6, 12 and 24 months following injury. The primary sample are parents of injured children 0–12 years hospitalised in the Australian states of New South Wales, Queensland, Victoria and South Australia. Primary data sources are child and parent demographic data; survey data; and semi-structured interview data across a 24 month period.

Discussion

This study aims to address the existing gap in knowledge on the experiences and unmet support needs of parents in the 2 years following child injury to provide guidance for care provision for these families. There is a lack of evidence-based recommendations for supporting parents and families of injured children and strengthening their capacity to address the challenges they face.
Literature
1.
go back to reference Balluffi A, Kassam-Adams N, Kazak A, Tucker M, Dominguez T, Helfaer M. Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med. 2004;5(6):547–53.CrossRefPubMed Balluffi A, Kassam-Adams N, Kazak A, Tucker M, Dominguez T, Helfaer M. Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med. 2004;5(6):547–53.CrossRefPubMed
2.
go back to reference Board R, Ryan-Wenger N. Stressors and stress symptoms of mothers with children in the PICU. J Pediatr Nurs. 2003;18(3):195–202.CrossRefPubMed Board R, Ryan-Wenger N. Stressors and stress symptoms of mothers with children in the PICU. J Pediatr Nurs. 2003;18(3):195–202.CrossRefPubMed
3.
go back to reference Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, Barr J. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605–22.CrossRefPubMed Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, Barr J. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605–22.CrossRefPubMed
4.
go back to reference Shudy M, de Almeida ML, Ly S, Landon C, Groft S, Jenkins TL, Nicholson CE. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics. 2006;118 Suppl 3:S203–18.CrossRefPubMed Shudy M, de Almeida ML, Ly S, Landon C, Groft S, Jenkins TL, Nicholson CE. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics. 2006;118 Suppl 3:S203–18.CrossRefPubMed
5.
go back to reference Daviss WB, Mooney D, Racusin R, Ford JD, Fleischer A, McHugo GJ. Predicting posttraumatic stress after hospitalization for pediatric injury. J Am Acad Child Adolesc Psychiatry. 2000;39(5):576–83.CrossRefPubMed Daviss WB, Mooney D, Racusin R, Ford JD, Fleischer A, McHugo GJ. Predicting posttraumatic stress after hospitalization for pediatric injury. J Am Acad Child Adolesc Psychiatry. 2000;39(5):576–83.CrossRefPubMed
6.
go back to reference Carnevale F. Striving to recapture our previous life: the experience of families with critically ill children. Off J Can Assoc Crit Care Nurs. 1999;10(1):16–22.PubMed Carnevale F. Striving to recapture our previous life: the experience of families with critically ill children. Off J Can Assoc Crit Care Nurs. 1999;10(1):16–22.PubMed
7.
go back to reference Leidy NK, Margolis MK, Marcin JP, Flynn JA, Frankel LR, Johnson S, Simoes EA. The impact of severe respiratory syncytial virus on the child, caregiver, and family during hospitalization and recovery. Pediatrics. 2005;115(6):1536–46.CrossRefPubMed Leidy NK, Margolis MK, Marcin JP, Flynn JA, Frankel LR, Johnson S, Simoes EA. The impact of severe respiratory syncytial virus on the child, caregiver, and family during hospitalization and recovery. Pediatrics. 2005;115(6):1536–46.CrossRefPubMed
8.
go back to reference Noyes J. The impact of knowing your child is critically ill: a qualitative study of mothers’ experiences. J Adv Nurs. 1999;29(2):427–35.CrossRefPubMed Noyes J. The impact of knowing your child is critically ill: a qualitative study of mothers’ experiences. J Adv Nurs. 1999;29(2):427–35.CrossRefPubMed
9.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
10.
go back to reference Montgomery V, Oliver R, Reisner A, Fallat ME. The effect of severe traumatic brain injury on the family. J Trauma Acute Care Surg. 2002;52(6):1121–4.CrossRef Montgomery V, Oliver R, Reisner A, Fallat ME. The effect of severe traumatic brain injury on the family. J Trauma Acute Care Surg. 2002;52(6):1121–4.CrossRef
11.
go back to reference Sparacino PS, Tong EM, Messias DK, Foote D, Chesla CA, Gilliss CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung. 1997;26(3):187–95.CrossRefPubMed Sparacino PS, Tong EM, Messias DK, Foote D, Chesla CA, Gilliss CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung. 1997;26(3):187–95.CrossRefPubMed
12.
go back to reference Taylor HG, Yeates KO, Wade SL, Drotar D, Stancin T, Burant C. Bidirectional child–family influences on outcomes of traumatic brain injury in children. J Int Neuropsychol Soc. 2001;7(6):755–67.CrossRefPubMed Taylor HG, Yeates KO, Wade SL, Drotar D, Stancin T, Burant C. Bidirectional child–family influences on outcomes of traumatic brain injury in children. J Int Neuropsychol Soc. 2001;7(6):755–67.CrossRefPubMed
13.
go back to reference Youngblut J, Shiao S. Child and family reactions during and after pediatric ICU hospitalization: a pilot study. Heart Lung. 1993;22(1):46.PubMed Youngblut J, Shiao S. Child and family reactions during and after pediatric ICU hospitalization: a pilot study. Heart Lung. 1993;22(1):46.PubMed
14.
go back to reference Youngblut JM, Lauzon S. Family functioning following pediatric intensive care unit hospitalization. Issues Compr Pediatr Nurs. 1995;18(1):11–25.CrossRefPubMed Youngblut JM, Lauzon S. Family functioning following pediatric intensive care unit hospitalization. Issues Compr Pediatr Nurs. 1995;18(1):11–25.CrossRefPubMed
15.
go back to reference Anderson VA, Catroppa C, Haritou F, Morse S, Rosenfeld JV. Identifying factors contributing to child and family outcome 30 months after traumatic brain injury in children. J Neurol Neurosurg Psychiatry. 2005;76(3):401–8.CrossRefPubMedPubMedCentral Anderson VA, Catroppa C, Haritou F, Morse S, Rosenfeld JV. Identifying factors contributing to child and family outcome 30 months after traumatic brain injury in children. J Neurol Neurosurg Psychiatry. 2005;76(3):401–8.CrossRefPubMedPubMedCentral
16.
go back to reference Tomlinson PS, Harbaugh BL, Kotchevar J, Swanson L. Caregiver mental health and family health outcomes following critical hospitalization of a child. Issues Ment Health Nurs. 1995;16(6):533–45.CrossRefPubMed Tomlinson PS, Harbaugh BL, Kotchevar J, Swanson L. Caregiver mental health and family health outcomes following critical hospitalization of a child. Issues Ment Health Nurs. 1995;16(6):533–45.CrossRefPubMed
17.
go back to reference Neugebauer E, Bouillon B, Bullinger M, Wood-Dauphinee S. Quality of life after multiple trauma--summary and recommendations of the consensus conference. Restor Neurol Neurosci. 2002;20(3):161–7.PubMed Neugebauer E, Bouillon B, Bullinger M, Wood-Dauphinee S. Quality of life after multiple trauma--summary and recommendations of the consensus conference. Restor Neurol Neurosci. 2002;20(3):161–7.PubMed
18.
go back to reference Creswell JW, Plano Clark V. Designing and conducting mixed methods research. 2nd ed. Thousand Oaks: Sage; 2011. Creswell JW, Plano Clark V. Designing and conducting mixed methods research. 2nd ed. Thousand Oaks: Sage; 2011.
19.
go back to reference Creswell JW. Qualitative inquiry and research design: Choosing among five approaches. 2nd ed. Thousand Oaks: Sage; 2007. Creswell JW. Qualitative inquiry and research design: Choosing among five approaches. 2nd ed. Thousand Oaks: Sage; 2007.
20.
go back to reference Andrade AD. Interpretive research aiming at theory building: Adopting and adapting the case study design. Qual Rep. 2009;14(1):42–60. Andrade AD. Interpretive research aiming at theory building: Adopting and adapting the case study design. Qual Rep. 2009;14(1):42–60.
21.
go back to reference Kvale S, Brinkmann S. Interviews: Learning the craft of qualitative research interviewing. Thousand Oaks: Sage Publications; 2009. Kvale S, Brinkmann S. Interviews: Learning the craft of qualitative research interviewing. Thousand Oaks: Sage Publications; 2009.
23.
go back to reference Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol. 2001;26(3):155–62.CrossRefPubMed Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol. 2001;26(3):155–62.CrossRefPubMed
24.
go back to reference Fleishman JA, Selim AJ, Kazis LE. Deriving SF-12v2 physical and mental health summary scores: a comparison of different scoring algorithms. Qual Life Res. 2010;19(2):231–41.CrossRefPubMed Fleishman JA, Selim AJ, Kazis LE. Deriving SF-12v2 physical and mental health summary scores: a comparison of different scoring algorithms. Qual Life Res. 2010;19(2):231–41.CrossRefPubMed
25.
go back to reference Lovibond PF, Lovibond SH. The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther. 1995;33(3):335–43.CrossRefPubMed Lovibond PF, Lovibond SH. The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther. 1995;33(3):335–43.CrossRefPubMed
26.
go back to reference Connor K, Davidson J. Development of a new resilience scale: The Connor-Davidson Resilience Scale (CD-RISC. Depress Anxiety. 2003;18:76–82.CrossRefPubMed Connor K, Davidson J. Development of a new resilience scale: The Connor-Davidson Resilience Scale (CD-RISC. Depress Anxiety. 2003;18:76–82.CrossRefPubMed
27.
go back to reference Ahern N, Kiehl E, Sole M, Byers J. A review of instruments measuring resilience. Issues Compr Pediatr Nurs. 2006;29(2):103–25.CrossRefPubMed Ahern N, Kiehl E, Sole M, Byers J. A review of instruments measuring resilience. Issues Compr Pediatr Nurs. 2006;29(2):103–25.CrossRefPubMed
28.
go back to reference Brussoni M, Kruse S, Walker K. Validity and reliability of the EQ-5D-3 L™ among a paediatric injury population. Health Qual Life Outcomes. 2013;11(1):157.CrossRefPubMedPubMedCentral Brussoni M, Kruse S, Walker K. Validity and reliability of the EQ-5D-3 L™ among a paediatric injury population. Health Qual Life Outcomes. 2013;11(1):157.CrossRefPubMedPubMedCentral
29.
go back to reference Curtis K, Foster K, Mitchell R, Van C. Models of Care Delivery for Families of Critically Ill Children: An Integrative Review of International Literature. Journal of Pediatric Nursing: Nursing Care of Children and Families. 2015;early online. Curtis K, Foster K, Mitchell R, Van C. Models of Care Delivery for Families of Critically Ill Children: An Integrative Review of International Literature. Journal of Pediatric Nursing: Nursing Care of Children and Families. 2015;early online.
30.
go back to reference Australian Government. NHMRC national statement on ethical conduct in human research. Canberra: National Health and Medical Research Council; 2007. Australian Government. NHMRC national statement on ethical conduct in human research. Canberra: National Health and Medical Research Council; 2007.
31.
go back to reference Miles MB, Huberman AM. Qualitative data analysis: An expanded sourcebook. London: Sage Publications; 1994. Miles MB, Huberman AM. Qualitative data analysis: An expanded sourcebook. London: Sage Publications; 1994.
32.
go back to reference Bazeley P, Jackson K. Qualitative data analysis with NVIVO. 2nd ed. London: Sage; 2013. Bazeley P, Jackson K. Qualitative data analysis with NVIVO. 2nd ed. London: Sage; 2013.
33.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
34.
go back to reference Brand J, Silburn K. In from the beginning: Building knowledge translation into research proposals to increase uptake and impact (and funding success). Melbourne: Paper presented at: 3rd Annual NHMRC Symposium on Research Translation; 2014. Brand J, Silburn K. In from the beginning: Building knowledge translation into research proposals to increase uptake and impact (and funding success). Melbourne: Paper presented at: 3rd Annual NHMRC Symposium on Research Translation; 2014.
35.
go back to reference Titler M. The evidence for evidence-based practice implementation. In: Hughes R, editor. Patient safety and quality: An evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality; 2008. Titler M. The evidence for evidence-based practice implementation. In: Hughes R, editor. Patient safety and quality: An evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality; 2008.
36.
go back to reference Bate P, Mendel P, Robert G. Organizing for quality: the improvement journeys of leading hospitals in Europe and the United States. Oxford: Radcliffe Publishing; 2008. Bate P, Mendel P, Robert G. Organizing for quality: the improvement journeys of leading hospitals in Europe and the United States. Oxford: Radcliffe Publishing; 2008.
Metadata
Title
The experiences, unmet needs and outcomes of parents of severely injured children: a longitudinal mixed methods study protocol
Authors
Kim Foster
Kate Curtis
Rebecca Mitchell
Connie Van
Alexandra Young
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2016
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-016-0693-8

Other articles of this Issue 1/2016

BMC Pediatrics 1/2016 Go to the issue