Enhancing Parental Coping with a Child’s Heart Condition: A Co-production Pilot Study

References

• Ali, S., Rhodes, L., Moreea, O., McMillan, D., Gilbody, S., Leach, C., … Delgadillo, J. (2017). How durable is the effect of low intensity CBT for depression and anxiety? Remission and relapse in a longitudinal cohort study. Behaviour Research and Therapy, 94, 1–8. doi:10.1016/j.brat.2017.04.006
   PubMed Web of Science ®Google Scholar
• Bouton, M. E. (2014). Why behavior change is difficult to sustain. Preventive Medicine, 68, 29–36. doi:10.1016/j.ypmed.2014.06.010
   PubMed Web of Science ®Google Scholar
• Bratt, E.-L., Järvholm, S., Ekman-Joelsson, B.-M., Mattson, L.-Å., & Mellander, M. (2015). Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context. BMC Pregnancy and Childbirth, 15(1), 171. doi:10.1186/s12884-015-0610-4
   Google Scholar
• Brosig, C. L., Whitstone, B. N., Frommelt, M. A., Frisbee, S. J., & Leuthner, S. R. (2007). Psychological distress in parents of children with severe congenital heart disease: The impact of prenatal versus postnatal diagnosis. Journal of Perinatology : Official Journal of the California Perinatal Association, 27(11), 687–692. doi:10.1038/sj.jp.7211807
   PubMed Web of Science ®Google Scholar
• Burkett, I. (n.d.). An introduction to co-design. Sydney, Australia: Centre for Social Impact, University of New South Wales.
   Google Scholar
• Caleshu, C., Kasparian, N. A., Edwards, K. S., Yeates, L., Semsarian, C., Perez, M., … Ingles, J. (2016). Interdisciplinary psychosocial care for families with inherited cardiovascular diseases. Trends in Cardiovascular Medicine, 26(7), 647–653. doi:10.1016/j.tcm.2016.04.010
   Web of Science ®Google Scholar
• Caris, E. C., Dempster, N., Wernovsky, G., Butz, C., Neely, T., Allen, R., … Cua, C. L. (2016). Anxiety scores in caregivers of children with hypoplastic left heart syndrome. Congenital Heart Disease, 11(6), 727–732. doi:10.1111/chd.12387
   PubMed Web of Science ®Google Scholar
• Davis, C. C., Brown, R. T., Bakeman, R., & Campbell, R. (1998). Psychological adaptation and adjustment of mothers of children with congenital heart disease: Stress, coping, and family functioning. Journal of Pediatric Psychology, 23(4), 219–228. doi:10.1093/jpepsy/23.4.219
   PubMed Web of Science ®Google Scholar
• Derogatis, L. R. (1993). BSI brief symptom inventory: administration, scoring, and procedures manual (4th ed.). Minneapolis, MN: National Computer Systems.
   Google Scholar
• Du Plessis, K., Peters, R., King, I., Robertson, K., Mackley, J., Maree, R., … d’Udekem, Y. (2018). “Will she live a long happy life?” Parents’ concerns for their children with Fontan circulation. International Journal of Cardiology Vasculature, 18, 65–70. doi:10.1016/j.ijcha.2018.02.008
   Web of Science ®Google Scholar
• Elo, A., Leppänen, A., & Jahkola, A. (2003). Validity of a single-item measure of stress symptoms. Scandinavian Journal of Work, Environment & Health, 6, 444–451. doi:10.5271/sjweh.752
   Google Scholar
• Filipe, A., Renedo, A., & Marston, C. (2017). The co-production of what? Knowledge, values, and social relations in health care. PLoS Biology, 15(5), e2001403. doi:10.1371/journal.pbio.2001403
   PubMed Web of Science ®Google Scholar
• Fredriksson-Larsson, U., Alsen, P., Karlson, B. W., & Brink, E. (2015). Fatigue two months after myocardial infarction and its relationships with other concurrent symptoms, sleep quality and coping strategies. Journal of Clinical Nursing, 24(15–16), 2192–2200. doi:10.1111/jocn.12876
   Web of Science ®Google Scholar
• Frydenberg, E. (2015). Families coping: Effective strategies for you and your child. Melbourne, Australia: Australian Council for Educational Research.
   Google Scholar
• Frydenberg, E., & Lewis, R. (2014). Coping scale for adults – second edition (CSA-2). Melbourne, Australia: ACER Press.
   Google Scholar
• Golfenshtein, N., Hanlon, A. L., Deatrick, J. A., & Medoff-Cooper, B. (2017). Parenting stress in parents of infants with congenital heart disease and parents of healthy infants: The first year of life. Comprehensive Child and Adolescent Nursing, 40(4), 294–314. doi:10.1080/24694193.2017.1372532
   PubMed Web of Science ®Google Scholar
• Guilfoyle, S. M., Denson, L. A., Baldassano, R. N., & Hommel, K. A. (2012). Paediatric parenting stress in inflammatory bowel disease: Application of the pediatric inventory for parents. Child: Care, Health and Development, 38(2), 273–279. doi:10.1111/j.1365-2214.2010.01200.x
   Web of Science ®Google Scholar
• IBM Corp. (2016). IBM SPSS statistics for windows (Version version 24). Amonk, NY: Author.
   Google Scholar
• Jackson, A. C., Enderby, K., O’Toole, M., Thomas, S. A., Ashley, D., Rosenfeld, J. V., … Gedye, R. (2009). The role of social support in families coping with childhood brain tumour. Journal of Psychosocial Oncology, 27(1), 1–24. doi:10.1080/07347330802614634
   PubMed Web of Science ®Google Scholar
• Jackson, A. C., Frydenberg, E., Liang, R. P., Higgins, R. O., & Murphy, B. M. (2015). Familial impact and coping with child heart disease: A systematic review. Pediatric Cardiology, 36(4), 695–712. doi:10.1007/s00246-015-1121-9
   Web of Science ®Google Scholar
• Jackson, A. C., Higgins, R. O., Frydenberg, E., Liang, R. P. T., & Murphy, B. M. (2018). Parent’s perspectives on how they cope with the impact on their family of a child with heart disease. Journal of Pediatric Nursing: Nursing Care of Children and Families, 40, e9–e17. doi:10.1016/j.pedn.2018.01.020
   Web of Science ®Google Scholar
• Jackson, A. C., Liang, R. P., Frydenberg, E., Higgins, R. O., & Murphy, B. M. (2016). Parent education programmes for special health care needs children: A systematic review. Journal of Clinical Nursing, 25(11–12), 1528–1547. doi:10.1111/jocn.13178
   Web of Science ®Google Scholar
• Kasparian, N. A., Winlaw, D. S., & Sholler, G. F. (2016). “Congenital heart health”: How psychological care can make a difference. The Medical Journal of Australia, 205(3), 104–107. doi:10.5694/mja16.00392
   PubMed Web of Science ®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. doi:10.1111/chd.12547
   Web of Science ®Google Scholar
• Kolaitis, G. A., Meentken, M. G., & Utens, E. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics, 5, 102. doi:10.3389/fped.2017.00102
   PubMed Web of Science ®Google Scholar
• Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science & Medicine, 47(7), 865–875. doi:10.1016/S0277-9536(98)00113-0
   PubMed Web of Science ®Google Scholar
• Lee, A., & Rempel, G. R. (2011). Parenting children with hypoplastic left heart syndrome: Finding a balance. Journal for Specialists in Pediatric Nursing : JSPN, 16(3), 179–189. doi:10.1111/j.1744-6155.2011.00289.x
   PubMed Web of Science ®Google Scholar
• Lisanti, A. J. (2018). Parental stress and resilience in CHD: A new frontier for health disparities research. Cardiology in the Young, 28, 1142–1150. doi:10.1017/S1047951118000963
   Web of Science ®Google Scholar
• Murphy, B. M., Higgins, R. O., Shand, L., Page, K., Holloway, E., Le Grande, M. R., & Jackson, A. C. (2016). Improving health professionals’ self-efficacy to support patients’ emotional recovery: The ‘cardiac blues project. European Journal of Cardiovascular Nursing, 16(2), 143–149. doi:10.1177/1474515116643869
   Web of Science ®Google Scholar
• Murphy, B. M., Worcester, M. U. C., Higgins, R. O., Elliott, P. C., Le Grande, M. R., Mitchell, F., … Goble, A. J. (2013). Reduction in two-year recurrent risk score and improved behavioural outcomes after participation in the beating heart problems self-management program: Results of a randomised controlled trial. Journal of Cardiopulmonary Rehabilitation and Prevention, 33(4), 220–228. doi:10.1097/HCR.0b013e31828c7812
   Google Scholar
• Pallant, J. F. (2016). SPSS survival manual: A step by step guide to data analysis using IBM SPSS. Sydney, Australia: Allen & Unwin.
   Google Scholar
• Sholler, G. F., Kasparian, N. A., & Winlaw, D. S. (2011). How to treat congenital heart disease. Australian Doctor, 27–34. Retrieved from http://www.australiandoctor.com.au/cmspages/getfile.aspx?guid=e534f9bb-15fe-4691-8f3e-71d9007f4e1c
   Google Scholar
• Soulvie, M. A., Desai, P. P., White, C. P., & Sullivan, B. N. (2012). Psychological distress experienced by parents of young children with congenital heart defects: A comprehensive review of literature. Journal of Social Service Research, 38(4), 484–502. doi:10.1080/01488376.2012.696410
   Web of Science ®Google Scholar
• Streisand, R., Braniecki, S., Tercyak, K. P., & Kazak, A. E. (2001). Childhood illness-related parenting stress: The pediatric inventory for parents. Journal of Pediatric Psychology, 26(3), 155–162. doi:10.1093/jpepsy/26.3.155
   PubMed Web of Science ®Google Scholar
• Streisand, R., Swift, E., Wickmark, T., Chen, R., & Holmes, C. S. (2005). Pediatric parenting stress among parents of children with type 1 diabetes: The role of self-efficacy, responsibility, and fear. Journal of Pediatric Psychology, 30(6), 513–521. doi:10.1093/jpepsy/jsi076
   PubMed Web of Science ®Google Scholar
• Tabachnick, B. G., & Fidell, L. S. (2013). Using multivariate statistics. Boston, MA: Pearson.
   Google Scholar
• Tarazi, R. A., Grant, M. L., Ely, E., & Barakat, L. P. (2007). Neuropsychological functioning in preschool-age children with sickle cell disease: The role of illness-related and psychosocial factors. Child Neuropsychology : a Journal on Normal and Abnormal Development in Childhood and Adolescence, 13(2), 155–172. doi:10.1080/09297040600611312
   PubMed Web of Science ®Google Scholar
• Utens, E., Callus, E., Levert, E. M., Groote, K., & Casey, F. (2018). Multidisciplinary family-centred psychosocial care for patients with CHD: Consensus recommendations from the AEPC psychosocial working group. Cardiology in the Young, 28(2), 192–198. doi:10.1017/s1047951117001378
   PubMed Web of Science ®Google Scholar
• Wei, H., Roscigno, C. I., Hanson, C. C., & Swanson, K. M. (2015). Families of children with congenital heart disease: A literature review. Heart & Lung : the Journal of Critical Care, 44(6), 494–511. doi:10.1016/j.hrtlng.2015.08.005
   PubMed Web of Science ®Google Scholar
• Werner, H., Latal, B., Valsangiacomo Buechel, E., Beck, I., & Landolt, M. A. (2014). The impact of an infant’s severe congenital heart disease on the family: A prospective cohort study. Congenital Heart Disease, 9(3), 203–210. doi:10.1111/chd.12123
   Web of Science ®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), e004862. doi:10.1161/JAHA.116.004862
   PubMed Web of Science ®Google Scholar
• Woolf-King, S. E., Arnold, E., Weiss, S., & Teitel, D. (2018). There’s no acknowledgement of what this does to people”: A qualitative exploration of mental health among parents of children with critical congenital heart defects. Journal of Clinical Nursing, 27, 2785–2794. doi:10.1111/jocn.14275
   PubMed Web of Science ®Google Scholar