Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften E-learning Web-tv Video Audio
Tips voor Mijn BSL
UITGEBREID ZOEKEN
Inloggen
Top
Quality of Life Research
Gepubliceerd in: Quality of Life Research 1/2021

10-09-2020

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

Auteurs: Ella Graj, Frank Muscara, Vicki Anderson, Stephen Hearps, Maria McCarthy

Gepubliceerd in: Quality of Life Research | Uitgave 1/2021

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

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.
vorige artikel Comparative study of life satisfaction among patients with psoriasis versus healthy comparison group: the explanatory role of body image and resource profiles
volgende artikel Assessing the impacts of having a child with achondroplasia on parent well-being
Literatuur
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.PubMedPubMedCentral
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
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.PubMed
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.PubMed
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
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
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
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
9.
Hosoda, T. (2014). The impact of childhood cancer on family functioning: A review. Graduate Student Journal of Psychology, 15, 18–30.
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
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
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.PubMed
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
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.
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.
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
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
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
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.
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.PubMedPubMedCentral
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.PubMed
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.PubMedPubMedCentral
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.
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
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.PubMedPubMedCentral
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
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.PubMedPubMedCentral
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
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.PubMedPubMedCentral
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
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
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.PubMedPubMedCentral
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.PubMedPubMedCentral
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
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.
37.
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.PubMedPubMedCentral
39.
40.
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.PubMed
42.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
43.
Burke, K., & Moore, S. (2015). Development of the parental psychological flexibility questionnaire. Child Psychiatry & Human Development, 46(4), 548–557.
44.
Moos, R., & Moos, B. (1994). The family environment scale manual (3rd ed.). Palo Alto: Consulting Psychological Press.
45.
46.
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
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
49.
Goodman, R. (1997). The strengths and difficulties questionnaire: A research note. Journal of Psychological Psychiatry, 38, 581–586.
50.
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
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
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.
57.
Ballinger, G. A. (2004). Using generalized estimating equations for longitudinal data analysis. Organizational Research Methods, 7(2), 127–150.
58.
Cohen, J. (1992). A power primer. Psychological Bulletin, 112(1), 155–159.PubMed
59.
60.
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.
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
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
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.PubMedPubMedCentral
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
66.
Sairanen, E., Lappalainen, P., & Hiltunen, A. (2018). Psychological inflexibility explains distress in parents whose children have chronic conditions. PLoS ONE, 13(7), e0201155.PubMedPubMedCentral
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
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.PubMedPubMedCentral
Metagegevens
Titel
Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study
Auteurs
Ella Graj
Frank Muscara
Vicki Anderson
Stephen Hearps
Maria McCarthy
Publicatiedatum
10-09-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02624-0

Andere artikelen Uitgave 1/2021

Quality of Life Research 1/2021 Naar de uitgave

OriginalPaper

Fulfillment of patients’ information needs during oral cancer treatment and its association with posttherapeutic quality of life

OriginalPaper

Validation of the WHOQOL-Bref instrument in Brazilian sign language (Libras)

OriginalPaper

Longitudinal analysis of health-related quality of life in cancer clinical trials: methods and interpretation of results

OriginalPaper

Adolescents’ sleep quality in relation to peer, family and school factors: findings from the 2017/2018 HBSC study in Flanders

OriginalPaper

An item response theory analysis of an item pool for the recovering quality of life (ReQoL) measure

OriginalPaper

Psychometric testing of the Skull Base Inventory health-related quality of life questionnaire in a multi-institutional study of patients undergoing open and endoscopic surgery