Skip to main content
SpringerLink
Log in

Risk models for predicting the health-related quality of life of caregivers of youth with gastrointestinal concerns

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

Abstract

Purpose

To determine the usefulness of cumulative and additive risk models in predicting the healthy-related quality of life (HRQOL) of caregivers of youth with chronic gastrointestinal conditions.

Methods

203 caregivers (82.8% mothers; 77.3% white) of youth (M = 11.27 years; 44.3% female; 78.8% White) completed self-report questionnaires focused on potential environmental, child health, and family risk factors that could impact caregiver HRQOL. Cumulative risk models, evaluating overall combined risk level, as well as an additive risk model, exploring individual risk variables, were evaluated.

Results

Higher levels of cumulative risk were associated with poorer caregiver HRQOL after controlling for child and caregiver sex. A linear cumulative risk model was a better fit than a quadratic cumulative risk model for predicting caregiver HRQOL, while an additive model identified child HRQOL, child pain interference and family functioning as the most individually impactful risk variables.

Conclusion

This study illustrates the usefulness of both additive and cumulative risk approaches in identifying caregivers at risk for poor HRQOL. Provision of appropriate referrals and interventions based on the caregiver’s risk factors can help protect caregiver quality of life and, in turn, benefit the care children with chronic conditions receive at home.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

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

    PubMed  Google Scholar 

  2. Campo, J. V., Bridge, J., Lucas, A., Savorelli, S., Walker, L., Di Lorenzo, C., et al. (2007). Physical and emotional health of mothers of youth with functional abdominal pain. Archives of Pediatrics and Adolescent Medicine, 161(2), 131–137. https://doi.org/10.1001/archpedi.161.2.131.

    Article  PubMed  Google Scholar 

  3. Fielding, D., Moore, B., Dewey, M., Ashley, P., McKendrick, T., & Pinkerton, P. (1985). Children with end-stage renal failure: Psychological effects on patients, siblings and parents. Journal of Psychosomatic Research, 29(5), 457–465.

    CAS  PubMed  Google Scholar 

  4. Blount, R. L., Morris, J. A., Cheng, P. S., Campbell, R. M., & Brown, R. T. (2004). Parent and child psychological factors in pediatric syncope and other somatic symptoms. Journal of Consulting and Clinical Psychology, 72(4), 597–604. https://doi.org/10.1037/0022-006x.72.4.597.

    Article  PubMed  Google Scholar 

  5. Hunfeld, J. A., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A. A., Passchier, J., van Suijlekom-Smit, L. W., et al. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26(3), 145–153.

    CAS  PubMed  Google Scholar 

  6. Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL™ family impact module: preliminary reliability and validity. Health and Quality of Life Outcomes, 2(1), 55.

    PubMed  PubMed Central  Google Scholar 

  7. Kunz, J. H., Greenley, R. N., & Howard, M. (2011). Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease. Quality of Life Research, 20(8), 1197–1204.

    PubMed  Google Scholar 

  8. Warschburger, P., Buchholz, H. T., & Petermann, F. (2004). Psychological adjustment in parents of young children with atopic dermatitis: which factors predict parental quality of life? British Journal of Dermatology, 150(2), 304–311.

    CAS  PubMed  Google Scholar 

  9. Feeley, C. A., Turner-Henson, A., Christian, B. J., Avis, K. T., Heaton, K., Lozano, D., et al. (2014). Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia. Journal of Pediatric Nursing, 29(1), 29–38.

    PubMed  Google Scholar 

  10. Hatzmann, J., Valstar, M. J., Bosch, A. M., Wijburg, F. A., Heymans, H. S. A., & Grootenhuis, M. A. (2009). Predicting health-related quality of life of parents of children with inherited metabolic diseases. Acta Paediatrica, 98(7), 1205–1210.

    PubMed  Google Scholar 

  11. van den Tweel, X. W., Hatzmann, J., Ensink, E., van der Lee, J. H., Peters, M., Fijnvandraat, K., et al. (2008). Quality of life of female caregivers of children with sickle cell disease: A survey. Haematologica, 93(4), 588–593.

    PubMed  Google Scholar 

  12. Majnemer, A., Shevell, M., Rosenbaum, P., Law, M., & Poulin, C. (2007). Determinants of life quality in school-age children with cerebral palsy. Journal of Pediatrics, 151(5), 470–475.

    PubMed  Google Scholar 

  13. Calvano, C., & Warschburger, P. (2018). Quality of life among parents seeking treatment for their child’s functional abdominal pain. Quality of Life Research, 27(10), 2557–2570.

    PubMed  Google Scholar 

  14. Jastrowski Mano, K. E., Khan, K. A., Ladwig, R. J., & Weisman, S. J. (2011). The impact of pediatric chronic pain on parents’ health-related quality of life and family functioning: reliability and validity of the PedsQL 4.0 Family Impact Module. Journal of pediatric psychology, 36(5), 517–527.

    PubMed  Google Scholar 

  15. Greenley, R. N., & Cunningham, C. (2008). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34(2), 129–136.

    PubMed  Google Scholar 

  16. Hommel, K. A., Mackner, L. M., Denson, L. A., & Crandall, W. V. (2008). Treatment regimen adherence in pediatric gastroenterology. Journal of Pediatric Gastroenterology and Nutrition, 47(5), 526.

    PubMed  PubMed Central  Google Scholar 

  17. Engstrom, I. (1992). Mental health and psychological functioning in children and adolescents with inflammatory bowel disease: a comparison with children having other chronic illnesses and with healthy children. Journal of Child Psychology and Psychiatry, 33(3), 563–582.

    CAS  PubMed  Google Scholar 

  18. Hodges, K., Kline, J. J., Barbero, G., & Woodruff, C. (1985). Anxiety in children with recurrent abdominal pain and their parents. Psychosomatics, 26(11), 859.

    CAS  PubMed  Google Scholar 

  19. Varni, J. W., Bendo, C. B., Nurko, S., Shulman, R. J., Self, M. M., Franciosi, J. P., et al. (2015). Health-related quality of life in pediatric patients with functional and organic gastrointestinal diseases. Journal of Pediatric, 166(1), 85–90.

    Google Scholar 

  20. Warschburger, P., Hänig, J., Friedt, M., Posovszky, C., Schier, M., & Calvano, C. (2014). Health-related quality of life in children with abdominal pain due to functional or organic gastrointestinal disorders. Journal of Pediatric Psychology, 39(1), 45–54.

    PubMed  Google Scholar 

  21. Stein, R. E., & Jessop, D. J. (1982). A noncategorical approach to chronic childhood illness. Public Health Reports, 97(4), 354.

    CAS  PubMed  PubMed Central  Google Scholar 

  22. Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, CA: Harvard University Press.

    Google Scholar 

  23. Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32(7), 513.

    Google Scholar 

  24. Klassen, A. F., Klaassen, R., 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 

  25. McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44(12), 3101–3118.

    PubMed  Google Scholar 

  26. Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., et al. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31(1), 26.

    PubMed  PubMed Central  Google Scholar 

  27. Everhart, R. S., Fiese, B. H., & Smyth, J. M. (2008). A cumulative risk model predicting caregiver quality of life in pediatric asthma. Journal of Pediatric Psychology, 33(8), 809–818.

    PubMed  PubMed Central  Google Scholar 

  28. Koinis-Mitchell, D., McQuaid, E. L., Seifer, R., Kopel, S. J., Esteban, C., Canino, G., et al. (2007). Multiple urban and asthma-related risks and their association with asthma morbidity in children. Journal of Pediatric Psychology, 32(5), 582–595.

    PubMed  Google Scholar 

  29. Lorant, V., Deliège, D., Eaton, W., Robert, A., Philippot, P., & Ansseau, M. (2003). Socioeconomic inequalities in depression: A meta-analysis. American Journal of Epidemiology, 157(2), 98–112.

    CAS  PubMed  Google Scholar 

  30. Bourdeau, T. L., Mullins, L. L., Carpentier, M. Y., Colletti, C. J. M., & Wolfe-Christensen, C. (2007). An examination of parenting variables and child self-care behavior across disease groups. Journal of Developmental and Physical Disabilities, 19(2), 125–134.

    Google Scholar 

  31. Defenderfer, E. K., Rybak, T. M., Davies, W. H., & Berlin, K. S. (2017). Predicting parent health-related quality of life: Evaluating conceptual models. Quality of Life Research, 26(6), 1405–1415.

    PubMed  Google Scholar 

  32. Barakat, L. P., Patterson, C. A., Weinberger, B. S., Simon, K., Gonzalez, E. R., & Dampier, C. (2007). A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. Journal of Pediatric Hematology, 29(11), 752–760.

    Google Scholar 

  33. Cushner-Weinstein, S., Dassoulas, K., Salpekar, J. A., Henderson, S. E., Pearl, P. L., Gaillard, W. D., et al. (2008). Parenting stress and childhood epilepsy: the impact of depression, learning, and seizure-related factors. Epilepsy & Behavior, 13(1), 109–114.

    Google Scholar 

  34. Jones, D. J., Forehand, R., Brody, G., & Armistead, L. (2002). Psychosocial adjustment of African American children in single-mother families: A test of three risk models. Journal of Marriage and Family, 64(1), 105–115.

    Google Scholar 

  35. Ackerman, B. P., Izard, C. E., Schoff, K., Youngstrom, E. A., & Kogos, J. (1999). Contextual risk, caregiver emotionality, and the problem behaviors of six-and seven-year-old children from economically disadvantaged families. Child Development, 70(6), 1415–1427.

    CAS  PubMed  Google Scholar 

  36. Gerard, J. M., & Buehler, C. (2004). Cumulative environmental risk and youth maladjustment: The role of youth attributes. Child Development, 75(6), 1832–1849.

    PubMed  Google Scholar 

  37. Horan, J. M., & Widom, C. S. (2015). Cumulative childhood risk and adult functioning in abused and neglected children grown up. Development and Psychopathology, 27(3), 927–941.

    PubMed  Google Scholar 

  38. Fontenot, K., Semega, J., & Kollar, M. (2018). Income and poverty in the United States: 2017 (pp. P60–263). Washington, DC: US Census Bureau.

    Google Scholar 

  39. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care, 39(8), 800–812.

    CAS  PubMed  Google Scholar 

  40. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(1), 2.

    PubMed  PubMed Central  Google Scholar 

  41. Varni, J. W., Stucky, B. D., Thissen, D., DeWitt, E. M., Irwin, D. E., Lai, J.-S., et al. (2010). PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. The Journal of Pain, 11(11), 1109–1119.

    PubMed  PubMed Central  Google Scholar 

  42. Kashikar-Zuck, S., Carle, A., Barnett, K., Goldschneider, K. R., Sherry, D. D., Mara, C. A., et al. (2016). Longitudinal evaluation of patient reported outcomes measurement information systems (PROMIS) measures in pediatric chronic pain. Pain, 157(2), 339.

    PubMed  PubMed Central  Google Scholar 

  43. Myers, T. A. (2011). Goodbye, listwise deletion: Presenting hot deck imputation as an easy and effective tool for handling missing data. Communication Methods and Measures, 5(4), 297–310.

    Google Scholar 

  44. United States Census Bureau [homepage on the Internet] updated 2019. State & county Quickfacts: Alabama. Available from https://www.census.gov/quickfacts/AL

  45. Appleyard, K., Egeland, B., van Dulmen, M. H. M., & Alan Sroufe, L. (2005). When more is not better: The role of cumulative risk in child behavior outcomes. Journal of Child Psychology and Psychiatry, 46(3), 235–245.

    PubMed  Google Scholar 

  46. Gumidyala, A. P., & Greenley, R. N. (2013). Correlates of health-related quality of life in pediatric inflammatory bowel disease: A cumulative risk model approach. Journal of Pediatric Psychology, 39(1), 55–64.

    PubMed  Google Scholar 

  47. Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013). Parenting stress in pediatric IBD: Relations with child psychopathology, family functioning, and disease severity. Journal of Developmental and Behavioral Pediatrics, 34(4), 237.

    PubMed  PubMed Central  Google Scholar 

  48. Banez, G. A., & Compas, B. E. (1990). Children's and parents' daily stressful events and psychological symptoms. Journal of Abnormal Child Psychology, 18(6), 591–605.

    CAS  PubMed  Google Scholar 

  49. Thompson, R. J., Gil, K. M., Burbach, D. J., Keith, B. R., & Kinney, T. R. (1993). Role of child and maternal processes in the psychological adjustment of children with sickle cell disease. Journal of Consulting and Clinical Psychology, 61(3), 468.

    PubMed  Google Scholar 

  50. Manuel, J. C. (2001). Risk and resistance factors in the adaptation in mothers of children with juvenile rheumatoid arthritis. Journal of Pediatric Psychology, 26(4), 237–246.

    CAS  PubMed  Google Scholar 

  51. Bandura, A., Caprara, G. V., Barbaranelli, C., Regalia, C., & Scabini, E. (2011). Impact of family efficacy beliefs on quality of family functioning and satisfaction with family life. Applied Psychology, 60(3), 421–448.

    Google Scholar 

  52. Podsakoff, P. M., MacKenzie, S. B., Lee, J. Y., & Podsakoff, N. P. (2003). Common method biases in behavioral research: A critical review of the literature and recommended remedies. Journal of Applied Psychology, 88(5), 879.

    PubMed  Google Scholar 

  53. Gold, J. I., Treadwell, M., Weissman, L., & Vichinsky, E. (2011). The mediating effects of family functioning on psychosocial outcomes in healthy siblings of children with sickle cell disease. Pediatric Blood & Cancer, 57(6), 1055–1061.

    Google Scholar 

Download references

Acknowledgements

Preparation of this article was supported in part by the by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under T71MC24209 University of Alabama at Birmingham Leadership Education in Adolescent Health Training Program.

Author information

Authors and Affiliations

  1. Department of Psychiatry, Section of Psychology, Indiana University School of Medicine, IU Health Neuroscience Center Goodman Hall, 355 West 16th Street, Indianapolis, IN, 46202, USA

    Mary K. Lynch

  2. Department of Psychology, University of Alabama at Birmingham, Birmingham, AL, USA

    Kathryn A. Thompson & Burel R. Goodin

  3. Division of Gastroenterology, Hepatology, & Nutrition, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA

    Reed A. Dimmitt & Margaux J. Barnes

Authors
  1. Mary K. Lynch
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kathryn A. Thompson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Reed A. Dimmitt
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Margaux J. Barnes
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Burel R. Goodin
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Mary K. Lynch.

Ethics declarations

Conflict interest

The authors declare that they have no conflict of interest.

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

Lynch, M.K., Thompson, K.A., Dimmitt, R.A. et al. Risk models for predicting the health-related quality of life of caregivers of youth with gastrointestinal concerns. Qual Life Res 29, 3343–3351 (2020). https://doi.org/10.1007/s11136-020-02601-7

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-020-02601-7

Keywords

Search

Navigation