Abstract
In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the “Revised Burden Measure” in a sample of parents of children with and without chronic health conditions. The “Revised Burden Measure” and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n = 277) or without (n = 117) chronic health conditions. Classical test theory, item response theory, multi-group confirmatory factor analysis, and multivariate and univariate analyses of covariance were conducted to investigate the reliability and validity of the instrument. The “Revised Burden Measure” was shown to have good reliability, as well as criterion and known-groups validity. The data showed minor DIF by children’s health status. Confirmatory factor analyses revealed a second-order model of caregiving burden (with Relationship, Objective and Subjective burdens loading on Overall Burden) and the construct validity of the complementary Uplifts subscale. Additionally, multi-group analyses ascertained the measurement and structural invariance of the model by children’s health status. The results generally confirm the reliability and validity of the “Revised Burden Measure” and demonstrate its overall clinical and developmental applicability in pediatric settings.
Highlights
-
The “Revised Burden Measure” is a valid and reliable measure for use in pediatric settings.
-
This clinically informative instrument is easy to administer, score and interpret.
-
The “Revised Burden Measure” enables a comprehensive assessment of negative and positive dimensions of caregiving.
-
This measure may be used to assess the caregiving experience of parents who have children with or without chronic conditions.
-
The instrument is recommended for the assessment of caregiver’s burdens and uplifts across different life-span periods.
Similar content being viewed by others
Abbreviations
- AVE:
-
Average variance extracted
- CFA:
-
Confirmatory factor analysis
- CFI:
-
Comparative fit index
- CR:
-
Composite reliability
- CRDIFF:
-
Critical ratios of difference between parameters
- df :
-
Degrees of freedom
- DIF:
-
Differential item functioning
- IRT:
-
Item Response Theory
- ISR:
-
Item Separation Reliability
- MH:
-
Mantel-Haenszel
- PSR:
-
Person Separation Reliability
- QoL:
-
Quality of life
- RMSEA:
-
Root mean square error of approximation
- SES:
-
Socioeconomic status
- SRMR:
-
Standardized root mean squared residual
References
Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlach, C. J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.
Barrera, M. (1986). Distinctions between social support concepts, measures, and models. American Journal of Community Psychology, 14(4), 413–445. https://doi.org/10.1007/BF00922627.
Bastawrous, M. (2013). Caregiver burden—a critical discussion. International Journal of Nursing Studies, 50(3), 431–441. https://doi.org/10.1016/j.ijnurstu.2012.10.005.
Bickman, L., & Rog, D. J. (2009). The SAGE handbook of applied social research methods (2nd ed.). Los Angeles: Sage.
Browne, M., & Cudeck, R. (1993). Alternative ways of assessing model fit. In K. Bollen & J. Long (Eds.), Testing structural equation models (pp. 136–162). Newbury Park, CA: Sage.
Bruil, J., & Detmar, S. B. (2005). Measuring health-related quality of life in children: difficulties and challenges. Expert Review of Pharmacoeconomics and Outcomes Research, 5(5), 511–514. https://doi.org/10.1586/14737167.5.5.511.
Byrne, B. M. (2010), Structural Equation Modeling with AMOS: basic concepts, applications, and programming (2nd ed.). New York, NY: Routledge.
Carona, C. (2013). The psychosocial adaptation of children and adolescents with cerebral palsy and their parents: a different matter or a matter of difference? Doctoral dissertation, Coimbra University. https://hdl.handle.net/10316/24358
Carona, C., Crespo, C., & Canavarro, M. C. (2013). Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Research in Developmental Disabilities, 34(3), 882–893. https://doi.org/10.1016/j.ridd.2012.12.004.
Carona, C., Pereira, M., Moreira, H., Silva, N., & Canavarro, M. C. (2012). The disability paradox revisited: quality of life and family caregiving in pediatric cerebral palsy. Journal of Child and Family Studies, 22(7), 971–986. https://doi.org/10.1007/s10826-012-9659-0.
Carona, C., Silva, N., Crespo, C., & Canavarro, M. C. (2014). Caregiving burden and parent–child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement. Journal of Clinical Psychology in Medical Settings, 21(4), 320–328. https://doi.org/10.1007/s10880-014-9412-5.
Cheung, G. W., & Rensvold, R. B. (2002). Evaluating goodness-of-fit indexes for testing measurement invariance. Structural Equation Modeling, 9(2), 233–255. https://doi.org/10.1207/S15328007SEM0902_5.
Chou, K., Chu, H., Tseng, C., & Lu, R. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82.
Christakis, D. A., Johnston, B. D., & Connell, F. A. (2001). Methodologic issues in pediatric outcomes research. Ambulatory Pediatrics, 1(1), 59–62. https://doi.org/10.1367/1539-4409(2001)001<0059:MIIPOR>2.0.CO;2.
Cummings, E. M., Davies, P. T., & Campbell, S. B. (2000). Developmental psychopathology and family process: theory, research and clinical implications. New York, NY: The Guilford Press.
Ekim, A., & Ocakci, A. F. (2016). Caregiver burden in pediatric asthma: a systematic review. Health Science Journal, 10(6), 476 https://doi.org/10.21767/1791-809X.1000476.
Farrell, A. M., & Rudd, J. M. (2009). Factor analysis and discriminant validity: a brief review of some practical issues. In D. Tojib (Ed.), ANZMAC 2009 conference proceedings. Melbourne, Australia: ANZMAC.
Folkman, S.(1997). Positive psychological states and coping with severe stress. Social Science & Medicine, 45(8), 1207–1221. https://doi.org/10.1016/S0277-9536(97)00040-3.
Folkman, S., & Moskowitz, J. T. (2000). Stress, positive emotion, and coping. Current Directions in Psychological Science, 9(4), 115–118. https://doi.org/10.1111/1467-8721.00073.
Fornell, C., & Larcker, D. F. (1981). Evaluating structural equation models with unobservable variables and measurement error. Journal of Marketing Research, 18(1), 39–50. https://doi.org/10.2307/3151312.
George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist, 26(3), 253–256. https://doi.org/10.1093/geront/26.3.253.
Gerharz, E. W., Eiser, C., & Woodhouse, C. R. J. (2003). Current approaches to assessing the quality of life in children and adolescents. British Journal of Urology International, 91(2), 150–154. https://doi.org/10.1046/j.1464-410X.2003.04001.x.
Gilbert, P. (1998). Evolutionary psychopathology: why isn’t the mind designed better than it is. British Journal of Medical Psychology, 71(4), 353–373. https://doi.org/10.1111/j.2044-8341.1998.tb00998.x.
Gonçalves, M. M., Simões, M. R., & Almeida, L. S. (2017). Psicologia clínica e da saúde—Instrumentos de avaliação (Clinical and health psychology—assessment instruments). Lisboa: PACTOR.
Hair, J. F., Black, W. C., Babin, B. J., & Anderson, R. E. (2010). Multivariate data analysis (7th ed.). New Jersey, NJ: Prentice Hall.
Helgeson, V. S., Reynolds, K. A., & Tomich, P. L. (2006). A meta-analytic review of benefit finding and growth. Journal of Consulting and Clinical Psychology, 74(5), 797–816. https://doi.org/10.1037/0022-006X.74.5.797.
Holland, P., & Thayer, D. (1988). Differential item performance and the Mantel-Haenszel procedure. In H. Wainer & H. I. Braun (Eds.), Test validity (pp. 129–145). Hillsdale, NJ: Erlbaum.
Hu, L., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling: A Multidisciplinary Journal, 6(1), 1–55. https://doi.org/10.1080/10705519909540118.
Jin, M., An, Q., & Wang, L. (2017). Chronic conditions in adolescents. Experimental and Therapeutic Medicine, 14(1), 478–482. https://doi.org/10.3892/etm.2017.4526.
Klassen, A., Klassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., & Sung, L. (2010). Caregiving demands in parents of children with cancer: psychometric validation of the care of my child with cancer questionnaire. Journal of Pediatric Nursing, 25(4), 258–263. https://doi.org/10.1016/j.pedn.2009.01.002.
Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: the updated Sociocultural Stress and Coping Model. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 65(1), 5–13. https://doi.org/10.1093/geronb/gbp096.
Larson, E. (2010). Psychological well-being and meaning-making when caregiving for children with disabilities: Growth through difficult times or sinking inward. OTJR: Occupation, Participation, Health, 30(2), 78–86. https://doi.org/10.3928/15394492-20100325-03.
Lee, Y. R., & Sung, K. T. (1998). Cultural influences on caregiving burden: cases of Koreans and Americans. The International Journal of Aging and Human Development, 46(2), 125–141. https://doi.org/10.2190/PM2C-V93R-NE8H-JWGV.
Lin, N., & Ensel, W. (1984). Depression-mobility and its social etiology: the role of life events and social support. Journal of Health and Social Behavior, 25(2), 176–188. https://doi.org/10.2307/2136667.
Linacre, J. M. (2011). A user’s guide to WINSTEPS & MINISTEPS: Rasch model computer programs. Winsteps.com.
Margalit, M., & Ankonina, D. B. (1991). Positive and negative affect in parenting disabled children. Counselling Psychology Quarterly, 4(4), 289–299. https://doi.org/10.1080/09515079108254437.
Montgomery, R. (2006). Using and interpreting the Montgomery-Borgatta Caregiving Burden Scale [PDF file]. https://www.researchgate.net/publication/265679222_Using_and_Interpreting_the_Montgomery_Borgatta_Caregiving_Burden_Scale;
Montgomery, R. J., Gonyea, J. G., & Hooyman, N. R. (1985). Caregiving and the experience of subjective and objective burden. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 34(1), 19–26. https://doi.org/10.2307/583753.
Montgomery, R. J. V., Borgatta, E. F., & Borgatta, M. L. (2000). Societal and family change in the burden of care. In W. T. Liu & H. L. Kendig (Eds.), Who should care for the elderly? An East-West value divide (pp. 27–54). Singapore: Singapore University Press.
Montgomery, R. J. V., & Kosloski, K. (2006). The league of experienced family caregivers: measure development. Milwaukee, WI: University of Wisconsin-Milwaukee.
Montgomery, R. J. V., & Kosloski, K. D. (2013). Pathways to a caregiver identity and implications for support services. In R. C. Talley & R. J. V. Montgomery (Eds.), Caregiving: Research, practice, policy. Caregiving across the lifespan: Research, practice, policy (pp. 131–156). New York, NY: Springer Science + Business Media.
Padilla, J. L., Hidalgo, M. D., Benítez, I., & Gómez-Benito, J. (2012). Comparison of three software programs for evaluating DIF by means of the Mantel-Haenszel procedure: EASY-DIF, DIFAS and EZDIF. Psicologica, 33(1), 135–156.
Pais-Ribeiro, J. L. (2001). Mental Health Inventory: Um estudo de adaptação à população portuguesa (Mental Health Inventory: Adaptation study to the Portuguese population). Psicologia, Saúde & Doenças, 2(1), 77–99.
Parham, R., Jacyna, N., Hothi, D., Marks, S. D., Holttum, S., & Camic, P. (2014). Development of a measure of caregiver burden in paediatric chronic kidney disease: the Paediatric Renal Caregiver Burden Scale. Journal of Health Psychology, 21(2), 193–205. https://doi.org/10.1177/1359105314524971.
Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583.
Pereira, M., Melo, C., Gameiro, S., & Canavarro, M. C. (2011). Estudos psicométricos da versão em Português Europeu do índice de qualidade de vida EUROHIS-QOL-8 (Psychometric studies of the European Portuguese version of the quality of life index EUROHIS-QOL-8). Laboratório de Psicologia, 9(2), 109–123. https://doi.org/10.14417/lp.627.
Prieto, G., Delgado, A. R., Perea, M. V., & Ladera, V. (2010). Scoring neuropsychological tests using the Rasch model: an illustrative example with the Rey-Osterreith Complex Figure. The Clinical Neuropsychologist, 24(1), 45–56. https://doi.org/10.1080/13854040903074645.
Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress: moderating versus mediating effects of social support. Journal of Personality and Social Psychology, 59(6), 1266–1278. https://doi.org/10.1037//0022-3514.59.6.1266.
Quittner, A. L., Opipari, L., Regoli, M., Jacobsen, J., & Eigen, H. (1992). The impact of caregiving and role strain on family life: comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology, 37(4), 275–290. https://doi.org/10.1037/h0079107.
Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), 626–636. https://doi.org/10.1542/peds.2004-1689.
Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., & Wood, E. (2004). Caregiving process and caregiver burden: conceptual models to guide research and practice. BioMed Central Pediatrics, 4, 1 https://doi.org/10.1186/1471-2431-4-1.
Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12(Suppl. 1), 33–41. https://doi.org/10.1023/A:1023513218433.
Savundranayagam, M. Y., Montgomery, R. J. V., & Kosloski, K. (2011). A dimensional analysis of caregiver burden among spouses and adult children. The Gerontologist, 51(3), 321–331. https://doi.org/10.1093/geront/gnq102.
Schmidt, S., Mühlan, H., & Power, M. (2006). The EUROHIS-QOL 8-item index: psychometric results of a cross-cultural field study. European Journal of Public Health, 16(4), 420–428. https://doi.org/10.1093/eurpub/cki155.
Silva, N., Carona, C., Crespo, C., & Canavarro, M. C. (2015a). Caregiving burden and uplifts: a contradiction or a protective partnership for the quality of life of parents and their children with asthma? Journal of Family Psychology, 29(2), 151–161. https://doi.org/10.1037/fam0000071.
Silva, N., Crespo, C., Carona, C., & Canavarro, M. C. (2015b). Mapping the caregiving process in paediatric asthma: parental burden, acceptance and denial coping strategies and quality of life. Psychology & Health, 30(8), 949–968. https://doi.org/10.1080/08870446.2015.1007981.
Simões, M. R. (1994). Investigações no âmbito da aferição nacional do teste das Matrizes Progressivas de Raven (Raven’s Progressive Matrices: Aferition studies). Doctoral Dissertation. Universidade de Coimbra. http://hdl.handle.net/10316/946
Tennant, A., & Conaghan, P. G. (2007). The Rasch measurement model in rheumatology: What is it and why use it? When should it be applied, and what should one look for in a Rasch paper? Arthritis & Rheumatism, 57(8), 1358–1362. https://doi.org/10.1002/art.23108.
Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., & de Vet, H. C. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012.
Townsend, P. (1957). The family life of old people: An inquiry in East London. London: Routledge & Kegan Paul.
Ullman, J. B. (1996). Structural equation modeling. In B. G. Tabachnick & L. S. Fidell (Eds.), Using multivariate statistics (pp. 709–819). New York, NY: Harper Collins College Publishers.
Veit, C. T., & Ware, J. E. (1983). The structure of psychological distress and well-being in general populations. Journal of Consulting and Clinical Psychology, 51, 730–742. https://doi.org/10.1037/0022-006X.51.5.730.
Vitaliano, P. P., Young, H. M., & Russo, J. (1991). Burden: a review of measures used among caregivers of individuals with dementia. The Gerontologist, 31(1), 67–75. https://doi.org/10.1093/geront/31.1.67.
Wallander, J. L., & Marullo, D. S. (1997). Handicap-related problems in mothers of children with physical impairments. Research in Developmental Disabilities, 18(2), 151–165. https://doi.org/10.1016/S0891-4222(96)00035-2.
Wallander, J. L., Varni, J. W., Babani, L., DeHaan, C. B., Wilcox, K. T., & Banis, H. T. (1989). The social environment and the adaptation of mothers of physically handicapped children. Journal of Pediatric Psychology, 14(3), 371–387. https://doi.org/10.1093/jpepsy/14.3.371.
West, S. G., Finch, J. F., & Curran, P. J. (1995). Structural equation models with non-normal variables: Problems and remedies. In R. Hoyle (Ed.), Structural equation modeling: Concepts, issues, and applications (pp. 56–75). Thousand Oaks, CA: Sage.
Wortman, C. B. (2004). Post-traumatic growth: progress and problems. Psychological Inquiry, 15(1), 81–90.
Zwick, R., & Ercikan, K. (1989). Analysis of differential item functioning in the NAEP history assessment. Journal of Educational Measurement, 26(1), 55–66. https://doi.org/10.1111/j.1745-3984.1989.tb00318.x.
Acknowledgements
This study was conducted within the Relationships, Development & Health research group of the R&D Unit “Center for Research in Neuropsychology and Cognitive-Behavioral Intervention” of the Faculty of Psychology and Education Sciences of the University of Coimbra (PEst-OE/PSI/UI0730/2014).
Funding
This study was funded by the National Foundation for Science and Technology (PEst-OE/PSI/UI0730/2014).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare that they have no conflict of interest.
Ethical Approval
This study was approved by the appropriate institutional and/or national research ethics committees (cf. “Participants and procedure” section) and has been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments.
Informed Consent
Informed consent was obtained from all individual participants included 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
About this article
Cite this article
Silva, N., Pereira, M., Canavarro, M.C. et al. The Applicability of the “Revised Burden Measure” in Pediatric Settings: Measuring Parents’ Caregiving Burdens and Uplifts. J Child Fam Stud 29, 3302–3316 (2020). https://doi.org/10.1007/s10826-020-01832-z
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10826-020-01832-z