Wellbeing and quality of life among parents of individuals with Fontan physiology

Fontan, F., & Baudet, E. (1971). Surgical repair of tricuspid atresia. Thorax, 26(3), 240–248.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Rychik, J., Atz, A. M., Celermajer, D. S., Deal, B. J., Gatzoulis, M. A., Gewillig, M. H., Hsia, T.-Y., Hsu, D. T., Kovacs, A. H., McCrindle, B. W., Newburger, J. W., Pike, N. A., Rodefeld, M., Rosenthal, D. N., Schumacher, K. R., Marino, B. S., Stout, K., Veldtman, G., Younoszai, A. K., & d’Udekem, Y. (2019). Evaluation and management of the child and adult with fontan circulation: A scientific statement from the American Heart Association. Circulation, 140(6), e234–e284.

Article  PubMed  Google Scholar 

Kverneland, L. S., Kramer, P., & Ovroutski, S. (2018). Five decades of the Fontan operation: A systematic review of international reports on outcomes after univentricular palliation. Congenital Heart Disease, 13(2), 181–193.

Article  PubMed  Google Scholar 

Woolf-King, S. E., Anger, A., Arnold, E. A., Weiss, S. J., & Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2).

Xiang, L., Su, Z., Liu, Y., Huang, Y., Zhang, X., Li, S., & Zhang, H. (2019). Impact of family socioeconomic status on health-related quality of life in children with critical congenital heart disease. Journal of the American Heart Association, 8(1), e010616.

Article  PubMed  Google Scholar 

Lawoko, S., & Soares, J. J. F. (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.

Article  CAS  PubMed  Google Scholar 

Cole, L., Ridings, L., & Phillips, S. M. (2023). Stress and coping factors affecting health-related quality of life in parents of children with congenital heart disease: An integrative review. Pediatric Cardiology.

Denniss, D. L., Sholler, G. F., Costa, D. S. J., Winlaw, D. S., & Kasparian, N. A. (2019). Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease. Journal of Pediatrics, 205, 21-28.e22.

Article  PubMed  Google Scholar 

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.

Article  PubMed  Google Scholar 

Mussatto, K. A., Rompay, M. I. V., Trachtenberg, F. L., Pemberton, V., Young-Borkowski, L., Uzark, K., Hollenbeck-Pringle, D., Dunbar-Masterson, C., Infinger, P., Walter, P., & Sawin, K. (2021). Family function, quality of life, and well-being in parents of infants with hypoplastic left heart syndrome. Journal of Family Nursing, 27(3), 222–234.

Article  PubMed  PubMed Central  Google Scholar 

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.

Article  PubMed  Google Scholar 

Khoshhal, S., Al-Harbi, K., Al-Mozainy, I., Al-Ghamdi, S., Aselan, A., Allugmani, M., Salem, S., El-Agamy, D., & Abo-Haded, H. (2019). Assessment of quality of life among parents of children with congenital heart disease using WHOQOL-BREF: A cross-sectional study from Northwest Saudi Arabia. Health and Quality of Life Outcomes, 17(1), 183.

Article  PubMed  PubMed Central  Google Scholar 

Gregory, M. R. B., Prouhet, P. M., Russell, C. L., & Pfannenstiel, B. R. (2018). Quality of life for parents of children with congenital heart defect: A systematic review. The Journal of Cardiovascular Nursing, 33(4), 363–371.

Article  PubMed  Google Scholar 

Ehrler, M., Wettach, C., Beck, I., Valsangiacomo Buechel, E. R., Latal, B., & Landolt, M. A. (2023). Mental health-related quality of life in mothers of children with surgically repaired congenital heart disease: A 13-year longitudinal study. Quality of Life Research, 32(10), 2975–2986.

Article  PubMed  PubMed Central  Google Scholar 

Lee, J. S., Cinanni, N., Di Cristofaro, N., Lee, S., Dillenburg, R., Adamo, K. B., Mondal, T., Barrowman, N., Shanmugam, G., Timmons, B. W., & Longmuir, P. W. (2020). Parents of very young children with congenital heart defects report good quality of life for their children and families regardless of defect severity. Pediatric Cardiology, 41(1), 46–53.

Article  CAS  PubMed  Google Scholar 

Coban, N., & Ortabag, T. (2022). Home care needs and symptoms of children undergoing heart surgery and quality of life of parents. International Journal of Caring Sciences, 15(1), 109.

Google Scholar 

Wray, J., Ridout, D., Jones, A., Davis, P., Wellman, P., Rodrigues, W., Hudson, E., Tsang, V., Pagel, C., & Brown, K. L. (2024). The impact of morbidities following pediatric cardiac surgery on family functioning and parent quality of life. Pediatric Cardiology, 45(1), 14–23.

Article  PubMed  Google Scholar 

Bektas, İ, Kır, M., Yıldız, K., Genç, Z., Bektas, M., & Ünal, N. (2020). Symptom frequency in children with congenital heart disease and parental care burden in predicting the quality of life of parents in Turkey. Journal of Pediatric Nursing, 53, e211–e216.

Article  PubMed  Google Scholar 

Lisanti, A. J., Golfenshtein, N., Marino, B. S., Huang, L., Hanlon, A. L., Lozano, A. J., Curley, M. A. Q., & Medoff-Cooper, B. (2022). Quality of life of mothers of infants subjected to neonatal cardiac surgery: The importance of psychosocial factors. World Journal for Pediatric and Congenital Heart Surgery, 13(3), 324–331.

Article  PubMed  Google Scholar 

Golfenshtein, N., Lisanti, A. J., & Medoff-Cooper, B. (2023). Infant’s difficult temperament characteristics predict poor quality of life in parents of infants with complex CHDs post-cardiac surgery. Cardiology in the Young, 33(8), 1316–1321.

Article  PubMed  Google Scholar 

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.

Article  PubMed  Google Scholar 

Apers, S., Luyckx, K., Goossens, E., Rassart, J., Budts, W., & Moons, P. (2015). Sense of coherence in young people with congenital heart disease. Journal of Developmental and Behavioral Pediatrics, 36(4), 267–276.

Article  PubMed  Google Scholar 

Moons, P., Apers, S., Kovacs, A. H., Thomet, C., Budts, W., Enomoto, J., Sluman, M. A., Wang, J.-K., Jackson, J. L., Khairy, P., Cook, S. C., Chidambarathanu, S., Alday, L., Oechslin, E., Eriksen, K., Dellborg, M., Berghammer, M., Johansson, B., Mackie, A. S., … consortium, t. A.-I., & Disease, t. I. S. f. A. C. H. (2020). Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life. European Journal of Cardiovascular Nursing, 20(1), 48–55.

Iyengar, A. J., Winlaw, D. S., Galati, J. C., Gentles, T. L., Weintraub, R. G., Justo, R. N., Wheaton, G. R., Bullock, A., Celermajer, D. S., & d’Udekem, Y. (2014). The Australia and New Zealand Fontan Registry: Description and initial results from the first population-based Fontan registry. Internal Medicine Journal, 44(2), 148–155.

Article  CAS  PubMed  Google Scholar 

Marshall, K. H., d’Udekem, Y., Winlaw, D. S., Dalziel, K., Woolfenden, S. R., Zannino, D., Costa, D. S. J., Bishop, R., Celermajer, D. S., Sholler, G. F., & Kasparian, N. A. (2022). The Australian and New Zealand Fontan Registry Quality of Life Study: Protocol for a population-based assessment of quality of life among people with a Fontan circulation, their parents, and siblings. British Medical Journal Open, 12(9), e065726.

Google Scholar 

Ferrans, C. E., Zerwic, J. J., Wilbur, J. E., & Larson, J. L. (2005). Conceptual model of health-related quality of life. Journal of Nursing Scholarship, 37(4), 336–342.

Article  PubMed  Google Scholar 

Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: A conceptual model of patient outcomes. JAMA, 273(1), 59–65.

Article  CAS  PubMed  Google Scholar 

Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL™* 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.

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.

Article  CAS  PubMed  Google Scholar 

Varni, J. W., & Limbers, C. A. (2009). The PedsQL™ 4.0 generic core scales young adult version: Feasibility, reliability and validity in a University Student Population. Journal of Health Psychology, 14(4), 611–622.

Article  PubMed  Google Scholar 

World Health Organization. (1998). Programme on mental health: WHOQOL user manual. World Health Organization.

Google Scholar 

Australian Bureau of Statistics. (2018). Household Income and Wealth, Australia, 2017–18. Retrieved June 2, 2020, from https://www.abs.46.gov.au/ausstats/abs@.nsf/PrimaryMainFeatures/6523.0?OpenDocument.

Stats NZ. (2018). Household income and housing-cost statistics: Year ended June 2018. Retrieved June 2, 2020 from https://www.stats.govt.nz/information-releases/household-income-and-housing-cost-statistics-year-ended-june-2018.

Australian Institute of Health Welfare. (2004). Rural, regional and remote health: A guide to remoteness classifications. AIHW. Retrieved June 2, 2020, from https://www.aihw.gov.au/reports/rural-remote-australians/guide-to-remoteness-classifications.

Stats NZ (2020). Urban accessibility—methodology and classification. Retrieved June 2, 2020 from www.stats.govt.nz.

Chew, L. D., Bradley, K. A., & Boyko, E. J. (2004). Brief questions to identify patients with inadequate health literacy. Family Medicine, 36(8), 588–594.

PubMed  Google Scholar 

Weiss, D. S. (2004). The impact of events scale—revised. In J. P. Wilson & T. M. Keane (Eds.), Assessing psychological trauma and PTSD (2nd ed., pp. 399–411). Guilford Press.

Google Scholar 

Lovibond, S. H. L. P. F. (1995). Manual for Depression Anxiety Stress Scale (2nd ed.). Psychology Foundation.

Google Scholar 

Luyten, P., Mayes, L. C., Nijssens, L., & Fonagy, P. (2017). The parental reflective functioning questionnaire: Development and preliminary validation. PloS One.

Alexander, R., Feeney, J., Hohaus, L., & Noller, P. (2001). Attachment style and coping resources as predictors of coping strategies in the transition to parenthood. Personal Relationships, 8(2), 137–152.

Article  Google Scholar 

Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of personality assessment, 52(1), 30–41.

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