Skip to main content

Advertisement

Log in

Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Parents of children with serious childhood illness or injury (SCII) are at risk of experiencing poor quality of life (QoL). This study investigated the nature of parent QoL at the time of child diagnosis and seven months post-diagnosis, the change in parent QoL over time, and early factors influencing short-term and longer-term parent QoL.

Methods

The sample was drawn from a prospective longitudinal cohort study conducted within a paediatric hospital setting. Participants comprised 223 parents of 167 children diagnosed with a life-threatening illness and hospitalised in the cardiology, oncology, or intensive care departments. Examined data included QoL ratings completed by parents within four weeks of diagnosis and seven months post-diagnosis, and demographic, illness-related, and psychosocial predictor measures collected within four weeks of diagnosis, or four months post-diagnosis.

Results

Generalised Estimating Equations were utilised to analyse data. Results indicated poor parent QoL at diagnosis, and normalised parent QoL at seven months. Improvement occurred most noticeably in the psychosocial domain. Reduced acute stress symptomatology and increased psychological flexibility were associated with higher parent QoL at diagnosis. Increased perceived emotional resources predicted enhanced parent QoL at seven months.

Conclusion

Paediatric medical care teams should consider the challenges to QoL experienced by parents of children with SCII. Parents reporting acute stress symptoms during the acute-illness phase should be prioritised for intervention. Further, parent-dyads presenting at post-acute care settings reporting poor emotional resources would benefit from psychosocial and educative support.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

The principal investigator, Maria McCarthy had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

The data for this study will be made available in the Murdoch Children’s Hospital Lifecourse data repository.

References

  1. Golics, C. J., Basra, M. K. A., Salek, M. S., & Finlay, A. Y. (2013). The impact of patients’ chronic disease on family quality of life: An experience from 26 specialities. International Journal of General Medicine, 6, 787–798.

    PubMed  PubMed Central  Google Scholar 

  2. Svavarsdottir, E. K., & Tryggvadottir, G. B. (2019). Predictors of quality of life for families of children and adolescents with severe physical illnesses who are receiving hospital-based care. Scandinavian Journal of Caring Sciences, 33(3), 698–705.

    PubMed  Google Scholar 

  3. Hawthorne, G., Richardson, J., & Osborne, R. (1999). The assessment of quality of life (AQoL) instrument: A psychometric measure of health-related quality of life. Quality of Life Research, 8(3), 209–224.

    CAS  PubMed  Google Scholar 

  4. Muscara, F., McMarthy, M. C., Woolf, C., Hearps, S. J. C., Burke, K., & Anderson, V. A. (2015). Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting. European Psychiatry, 30(5), 555–561.

    CAS  PubMed  Google Scholar 

  5. Muscara, F., McCarthy, M. C., Hearps, S. J. C., Nicholson, J. M., Burke, K., Dimovski, A., et al. (2018). Trajectories of posttraumatic stress symptoms in parents of children with a serious childhood illness or injury. Journal of Pediatric Psychology, 43(10), 1072–1082.

    PubMed  Google Scholar 

  6. Nugent, N. R., Ostrowski, S., Christopher, N. C., & Delehanty, D. L. (2007). Parental posttraumatic stress symptoms as a moderator of child’s acute biological response and subsequent posttraumatic stress symptoms in pediatric injury patients. Journal of Pediatric Psychology, 32(3), 309–318.

    PubMed  Google Scholar 

  7. Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-oncology, 13(6), 390–407.

    PubMed  Google Scholar 

  8. Van Schoors, M., Caes, L., Verhofstadt, L. L., Goubert, L., & Alderfer, M. A. (2015). Systematic review: Family resilience after pediatric cancer diagnosis. Journal of Pediatric Psychology, 40(9), 856–868.

    PubMed  Google Scholar 

  9. Hosoda, T. (2014). The impact of childhood cancer on family functioning: A review. Graduate Student Journal of Psychology, 15, 18–30.

    Google Scholar 

  10. Giammona, A. J., & Malek, D. M. (2002). The psychological effect of childhood cancer on families. Pediatric Clinics of North America, 49(5), 1063–1081.

    PubMed  Google Scholar 

  11. Prince, M., Patel, V., Saxena, S., Maj, M., Maselko, J., Phillips, M. R., et al. (2007). No health without mental health. Lancet, 370(9590), 859–877.

    PubMed  Google Scholar 

  12. Wallander, J. L., & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. The Journal of Child Psychology and Psychiatry, 39(1), 29–46.

    CAS  PubMed  Google Scholar 

  13. Hatzmann, J., Heymans, H. S. A., Ferrer-i-Carbonell, A., van Praag, B. M. S., & Grootenhuis, M. A. (2008). Hidden consequences of success in paediatrics: parental health-related quality of life: Results from the Care Project. Pediatrics, 122(5), e1030–e1038.

    PubMed  Google Scholar 

  14. von Essen, L., Sjödén, P. O., & Mattsson, E. (2004). Swedish mothers and fathers of a child diagnosed with cancer: A look at their quality of life. Acta Oncologica, 43(5), 474–479.

    Google Scholar 

  15. Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in a crisis: Conceptualising mothers of children with cancer. Social Science & Medicine, 55(10), 1835–1847.

    Google Scholar 

  16. Khoury, M. N., Huijer, H. A., & Doumit, M. A. A. (2013). Lebanese parents’ experiences with a child with cancer. European Journal of Oncology Nursing, 17(1), 16–21.

    PubMed  Google Scholar 

  17. Buysse, C. M. P., Raat, H., Hazelzet, J. A., Hop, W. C. J., Maliepaard, M., & Joosten, K. F. M. (2008). Surviving meningococcal septic shock: Health consequences and quality of life in children and their parents up to 2 years after pediatric intensive care unit discharge. Critical Care Medicine, 36(2), 596–602.

    PubMed  Google Scholar 

  18. Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: A 6-month prospective study. The Journal of Pediatrics, 158(1), 37–43.

    PubMed  Google Scholar 

  19. Salvador, A., Crespo, C., Martins, A. R., Santos, S., & Canavarro, M. C. (2015). Parents’ perceptions about their child’s illness in pediatric cancer: Links with caregiving burden and quality of life. Journal of Child and Family Studies, 24(4), 1129–1140.

    Google Scholar 

  20. Klassen, A. F., Raina, P., McIntosh, C., Sung, L., Klaassen, R. J., O’Donnell, … Dix, D. (2011). Parents of children with cancer: Which factors explain differences in health-related quality of life. International Journal of Cancer, 129(5), 1190–1198

  21. Litzelman, K., Catrine, K., Gangnon, R., & Witt, W. P. (2011). Quality of life among parents of children with cancer or brain tumors: The impact of child characteristics and parental psychosocial factors. Quality of Life Research, 20(8), 1261–1269.

    PubMed  PubMed Central  Google Scholar 

  22. Lawoko, S., & Soares, J. J. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research, 12(6), 655–666.

    CAS  PubMed  Google Scholar 

  23. Hatzmann, J., Maurice-Stam, H., Heymans, H. S. A., & Grootenhuis, M. A. (2009). A predictive model of health-related quality of life of parents of chronically ill children: The importance of care-dependency of their child and their support system. Health and Quality of Life Outcomes, 7, 72.

    PubMed  PubMed Central  Google Scholar 

  24. Sophia, M., Kumar, S. A. K., Viswanathan, G. A., & Sabhesan, S. (2017). A study of psychopathology, coping and quality of life in parents of children diagnosed with acute leukaemia. Journal of Evolution of Medical and Dental Sciences, 6(86), 5941–5946.

    Google Scholar 

  25. Kaugars, A., Shields, C., & Brosig, C. (2018). Stress and quality of life among parents of children with congenital heart disease referred for psychological services. Congenital Heart Disease, 13(1), 72–78.

    PubMed  Google Scholar 

  26. Arafa, M. A., Zaher, S. R., El-Dowaty, A. A., & Moneeb, D. E. (2008). Quality of life among parents of children with heart disease. Health and Quality of Life Outcomes, 6, 91.

    PubMed  PubMed Central  Google Scholar 

  27. Klassen, A. F., Klaassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., et al. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology, 26(36), 5884–5889.

    PubMed  Google Scholar 

  28. Eiser, C., Eiser, R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes, 3, 29.

    PubMed  PubMed Central  Google Scholar 

  29. Eagleson, K. J., Justo, R. N., Ware, R. S., Johnson, S. G., & Boyle, F. M. (2013). Health-related quality of life and congenital heart disease in Australia. Journal of Paediatrics and Child Health, 49(10), 856–864.

    PubMed  Google Scholar 

  30. Foster, K., Curtis, K., Mitchell, R., Van, C., & Young, A. (2016). The experiences, unmet needs, and outcomes of parents of severely injured children: A longitudinal mixed-methods study protocol. BMC Pediatrics, 16(1), 152–159.

    PubMed  PubMed Central  Google Scholar 

  31. Noble, A. J., Baisch, S., Mendelow, A. D., Allen, L., Kane, P., & Schenk, T. (2008). Posttraumatic stress disorder explained reduced quality of life in subarachnoid haemorrhage patients in both the short and long term. Neurosurgery, 63(6), 1095–1105.

    PubMed  Google Scholar 

  32. Holbrook, T. L., Hoyt, D. B., Coimbra, R., Potenza, B., Sise, M., & Anderson, J. P. (2005). High rates of acute stress disorder impact quality-of-life outcomes in injured adolescents: Mechanism and gender predict acute stress disorder risk. The Journal of Trauma, 59(5), 1126–1130.

    PubMed  Google Scholar 

  33. Martin-Herz, S. P., Zatzick, D. F., & McMahon, R. J. (2012). Health-related quality of life in children and adolescents following traumatic injury: A review. Clinical Child and Family Psychology Review, 15(3), 192–214.

    PubMed  PubMed Central  Google Scholar 

  34. Muscara, F., Burke, K., McCarthy, M. C., Anderson, V. A., Hearps, S. J. C., Hearps, S. J., et al. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a breath cohort study. BMC Psychiatry, 15, 153.

    PubMed  PubMed Central  Google Scholar 

  35. Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update of the Integrative (Trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 41(1), 86–97.

    PubMed  Google Scholar 

  36. Richardson, J., Iezzi, A., Khan, M. A., & Maxwell, A. (2014). Validity and reliability of the assessment of quality of life (AQoL)-8D multi-attribute utility instrument. The Patient—Patient-Centred Outcomes Research, 7(1), 85–96.

    Google Scholar 

  37. Centre for Health Economics. (2018). Aqol-8D. Retrieved from https://www.monash.edu/business/che/aqol/using-aqol/instruments/aqol-8d

  38. Allen, J., Inder, K. J., Lewin, T. J., Attia, J. R., & Kelly, B. J. (2013). Construct validity of the assessment of quality of life – 6D (AQoL-6D) in community samples. Health and Quality of Life Outcomes, 11(1), 61.

    PubMed  PubMed Central  Google Scholar 

  39. Centre for Health Economics. (2018). Scoring. Retrieved from https://www.monash.edu/business/che/aqol/using-aqol/scoring

  40. Maxwell, A., Ozmen, M., Iezzi, A., & Richardson, J. (2016). Norms for the AQoL-6D and AQoL-8D multi attribute utility instruments (Research Paper No. 94). Melbourne: Centre for Health Economics, Monash University. https://www.aqol.com.au/papers/researchpaper94.pdf

  41. Bryant, R. A., Moulds, M. L., & Guthrie, R. M. (2000). Acute Stress Disorder Scale: A self-report measure of acute stress disorder. Psychological Assessment, 12(1), 61–68.

    CAS  PubMed  Google Scholar 

  42. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.

    Google Scholar 

  43. Burke, K., & Moore, S. (2015). Development of the parental psychological flexibility questionnaire. Child Psychiatry & Human Development, 46(4), 548–557.

    Google Scholar 

  44. Moos, R., & Moos, B. (1994). The family environment scale manual (3rd ed.). Palo Alto: Consulting Psychological Press.

    Google Scholar 

  45. Knafl, K., Deatrick, J. A., Gallo, A., Dixon, J., Grey, M., Knafl, G., et al. (2011). Assessment of the psychometric properties of the family management measure. Journal of Pediatric Psychology, 36(5), 494–505. https://doi.org/10.1093/jpepsy/jsp034.

    Article  PubMed  Google Scholar 

  46. Knafl, K., Deatrick, J., Gallo, A., Dixon, J., & Grey, M. (2013). Family management measure. Retrieved from https://nursing.unc.edu/files/2013/02/ccm3_030928.pdf

  47. Bonner, M. J., Hardy, K. K., Guill, A. B., McLaughlin, C., Schweitzer, H., & Carter, K. (2006). Development and validation of the parent experience of child illness. Journal of Pediatric Psychology, 31(3), 310–321.

    PubMed  Google Scholar 

  48. Briggs-Gowan, M. J., Carter, A. C., Irwin, J. R., Wachtel, K., & Cicchetti, D. V. (2004). The brief infant-toddler social and emotional assessment: Screening for social-emotional problems and delays in competence. Journal of Pediatric Psychology, 29(2), 143–155.

    PubMed  Google Scholar 

  49. Goodman, R. (1997). The strengths and difficulties questionnaire: A research note. Journal of Psychological Psychiatry, 38, 581–586.

    CAS  Google Scholar 

  50. Youth in Mind. (2016). Scoring the SDQ. Retrieved from https://www.sdqinfo.com/py/sdqinfo/c0.py.

  51. Briggs-Gowan, M., & Carter, A. (2002). Brief infant-toddler social and emotional assessment (BITSEA) manual (version 2.0). University Y: New Haven.

  52. Kazak, A. E., Prusak, A., McSherry, M., Simms, S., Beele, D., Rourke, M., … Lange, B. (2001). The psychosocial assessment tool (PAT): Pilot data on a brief screening instrument for identifying high risk families in pediatric oncology. Families, Systems & Health, 19(3), 303–317.

  53. McCarthy, M., Clarke, N. E., Vance, A., Ashley, D. M., Heath, J. A., & Anderson, V. (2009). Measuring psychosocial risk in families caring for a child with cancer: The Psychosocial Assessment Tool (PAT2.0). Pediatric Blood Cancer, 53, 78–83.

    PubMed  Google Scholar 

  54. McCarthy, M. C., Hearps, S. J., Muscara, F., Anderson, V. A., Burke, K., Hearps, S. J., et al. (2016). Family psychosocial screening in infants and older children in the acute pediatric hospital setting: The Psychcoscial Assessment Tool. Journal of Pediatric Psychology, 41(7), 820–829.

    PubMed  Google Scholar 

  55. Pai, A. L., Patino-Fernandez, A. M., McSherry, M., Beele, D., Alderfer, M. A., Reilly, A. T., . . . Kazak, A. E. (2008). The Psychosocial Assessment Tool (PAT2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 33(1), 50–62.

  56. Nicholson, J. S., Deboeck, P. R., & Howard, W. (2017). Attrition in developmental psychology. International Journal of Behavioral Development, 41(1), 143–153.

    Google Scholar 

  57. Ballinger, G. A. (2004). Using generalized estimating equations for longitudinal data analysis. Organizational Research Methods, 7(2), 127–150.

    Google Scholar 

  58. Cohen, J. (1992). A power primer. Psychological Bulletin, 112(1), 155–159.

    CAS  PubMed  Google Scholar 

  59. Hawthorne, G., Richardson, J., & Day, N. (2009). Using the assessment of quality of life (AQoL) Version 1. Retrieved from https://www.aqol.com.au/documents/copy-tech-report-12.pdf.

  60. Assessment of Quality of Life. (2015). AQoL-4D Algorithm for SPSS. Retrieved from https://www.aqol.com.au/scoring-algorithms/82.html.

  61. Kleinke, K. (2017). Multiple imputation under violated distributional assumptions: A systematic evaluation of the assumed robustness of predictive mean matching. Journal of Educational and Behavioral Statistics, 42(4), 371–404.

    Google Scholar 

  62. McCarthy, M. C., Ashley, D. M., Lee, K. L., & Anderson, V. A. (2012). Predictors of acute and posttraumatic stress symptoms in parents following their child’s cancer diagnosis. Journal of Traumatic Stress, 25(5), 558–566.

    PubMed  Google Scholar 

  63. Vrijmoet-Wiersma, J. C. M., van Klink, J. M. M., Kolk, A. M., Koopman, H. M., Ball, L. M., & Egeler, R. M. (2008). Assessment of parental psychological stress in pediatric cancer: A review. Journal of Pediatric Psychology, 33(7), 694–706.

    PubMed  Google Scholar 

  64. Phipps, S., Long, A., Willard, V. W., Hudson, M., Huang, Q., Zhang, H., et al. (2015). Parents of children with cancer: At-risk or resilient? Journal of Pediatric Psychology, 40(9), 914–925.

    PubMed  PubMed Central  Google Scholar 

  65. Le Brocque, R. M., Hendrikz, J., & Kenardy, J. A. (2010). Parental response to child injury: Examination of parental posttraumatic stress symptom trajectories following child accidental injury. Journal of Pediatric Psychology, 35(6), 646–655.

    PubMed  Google Scholar 

  66. Sairanen, E., Lappalainen, P., & Hiltunen, A. (2018). Psychological inflexibility explains distress in parents whose children have chronic conditions. PLoS ONE, 13(7), e0201155.

    PubMed  PubMed Central  Google Scholar 

  67. Chong, Y., Mak, Y., Leung, S., Lam, S., & Loke, A. Y. (2019). Acceptance and commitment therapy for parental management of childhood asthma: An RCT. Pediatrics, 143(2), e20181723.

    PubMed  Google Scholar 

  68. Thorsteinsson, E. B., Loi, N. M., & Rayner, K. (2017). Self-efficacy, relationship satisfaction, and social support: The quality of life of maternal caregivers of children with type 1 diabetes. PeerJ, 5, e3961.

    PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

We would like to thank participating families, as well as all staff involved in the running of this research project: Amy Coe, Nathan Dowling, Jackie Yamada, Claudia Woolf, Sampada Bhide, Melissa Dunning, Ellie Collinson. We acknowledge the generous funding support for this project from the Pratt Foundation and the Victorian Department of Human Services. Vicki Anderson is funded by an NHMRC Practitioner Fellowship (607333, 2010–2014), and Maria McCarthy is funded by a Murdoch Children’s Research Institute Career Development Fellowship. We also acknowledge the support of the Victorian Government's Operational Infrastructure Support Program. None of the project funders had any involvement in the planning, design or execution of this research, and neither played a role in drafting the manuscript. There are no financial relationships or issues to disclose.

Funding

This work was funded by the Pratt Foundation, and was supported by the Victorian Government's Operational Infrastructure Support Program. None of the project funders had any involvement in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. There are no financial relationships or issues to disclose.

Author information

Authors and Affiliations

Authors

Contributions

Ella Graj, Frank Muscara, Vicki Anderson, Stephen Hearps, and Maria McCarthy were involved in study design, data interpretation, writing and reviewing the manuscript. Vicki Anderson was principal investigator and obtained funding for the study.

Corresponding author

Correspondence to Ella Graj.

Ethics declarations

Conflict of interest

The authors declare that they have no competing interests. No professional writers will be used to write any manuscripts that arise from this study.

Ethical approval

Ethics approval was obtained from the RCH Human Research Ethics Committee (HREC 30044).

Informed consent

Informed written consent was obtained from parents participating in the study.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Graj, E., Muscara, F., Anderson, V. et al. Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study. Qual Life Res 30, 193–202 (2021). https://doi.org/10.1007/s11136-020-02624-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-020-02624-0

Keywords

Navigation