Support Tool for Families of High-Risk Children With Heart Disease During Hospital Admission and After Discharge

Support Tool for Families of High-Risk Children With Heart Disease During Hospital Admission and After Discharge

Support Tool for Families of High-Risk Children With Heart Disease During Hospital Admission and After Discharge

The goal of this study is to pilot the "support tool" in the Nemours Cardiac Center to assess acceptability and feasibility. This tool will be offered to 5 high-risk families, and they will be asked to complete a survey. In addition, healthcare providers including bed-side nurses and cardiologists will be asked to complete a survey to assess the feasibility of the tool.

Despite advances in the care of children with heart disease, those affected often remain in need of complex care after hospital discharge. Multiple medications, tube feeds, and medical equipment are a few of the care needs parents face upon leaving the hospital. Unsurprisingly, many parents report problems in the transition of care from the hospital to the home. Clinical providers express frustration related to challenges with family education and communication around the time of discharge. Research is required to identify intervention strategies to improve parent/ caregiver confidence with caring for their child after discharge and reduce unintended resource utilization after discharge including clinical deterioration, unplanned 30-day readmissions, emergency department (ED) visits and nonadherence to outpatient appointments. In Aim 1 of the study, the investigators identified the modifiable barriers, perceived needs, and opportunities for intervention to support parents/ caregivers in meeting the care needs of the high-risk child with heart disease after discharge by conducting semi-structured qualitative interviews with parents/ caregivers and healthcare personnel. And based on participants' responses, the investigators developed a support tool to improve parent/ caregiver comfort with caring for the high-risk child and improve post discharge outcomes. The objective of this study is to pilot this support tool in 5 high-risk families in Nemours Cardiac Center and assess the acceptability and feasibility based on their experience.

The parent/caregivers of high-risk children with heart disease coming to the Nemours Cardiac Center for care will be offered a "support tool" and will be asked for it's acceptance and feasibility through their experience.

Pre-discharge intervention- Set expectations for parents/caregivers to spend time bedside and attend rounds iPad for the families to use the Nemours App, download education materials and Facetime communication with medical personnel. Download Nemours App and teach them how to use it Education materials- to ease the use of medications, Oxygen and feeding Assistance with transportation, child care, parental work schedule for discharge teaching Post Discharge intervention (Day 1-2): • Video/Facetime call with the family to check equipment, home environment and answer questions about medications and formula Post discharge intervention (Day 3-7): • Phone call to the family to ensure transportation for their first follow-up appointment, answer questions about medications, Oxygen and feeding.

Parent/Caregiver Group- Inclusion Criteria: • Parents of a child with congenital heart disease and planned discharge from the Nemours Cardiac Center. Exclusion Criteria: • Non-English and Non-Spanish speaking families. Healthcare providers Group- Inclusion Criteria: • Healthcare providers caring for a child with congenital heart disease and planned discharge from the Nemours Cardiac Center. Exclusion Criteria: • None

Mahle WT, Spray TL, Wernovsky G, Gaynor JW, Clark BJ 3rd. Survival after reconstructive surgery for hypoplastic left heart syndrome: A 15-year experience from a single institution. Circulation. 2000 Nov 7;102(19 Suppl 3):III136-41. doi: 10.1161/01.cir.102.suppl_3.iii-136.

Jacobs JP, Quintessenza JA, Burke RP, Bleiweis MS, Byrne BJ, Ceithaml EL, Decampli WM, Giroud JM, Perryman RA, Rosenkranz ER, Wolff G, Posner V, Steverson S, Blanchard WB, Schiebler GL. Analysis of regional congenital cardiac surgical outcomes in Florida using the Society of Thoracic Surgeons Congenital Heart Surgery Database. Cardiol Young. 2009 Aug;19(4):360-9. doi: 10.1017/S1047951109990151. Epub 2009 Jul 6.

Harlan GA, Nkoy FL, Srivastava R, Lattin G, Wolfe D, Mundorff MB, Colling D, Valdez A, Lange S, Atkinson SD, Cook LJ, Maloney CG. Improving transitions of care at hospital discharge--implications for pediatric hospitalists and primary care providers. J Healthc Qual. 2010 Sep-Oct;32(5):51-60. doi: 10.1111/j.1945-1474.2010.00105.x. Epub 2010 Jul 23.

Co JP, Ferris TG, Marino BL, Homer CJ, Perrin JM. Are hospital characteristics associated with parental views of pediatric inpatient care quality? Pediatrics. 2003 Feb;111(2):308-14. doi: 10.1542/peds.111.2.308.

Freed GL, Uren RL. Hospitalists in children's hospitals: What we know now and what we need to know. J Pediatr. 2006 Mar;148(3):296-9. doi: 10.1016/j.jpeds.2005.12.048. No abstract available.

Connor JA, Kline NE, Mott S, Harris SK, Jenkins KJ. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care. 2010 Sep-Oct;24(5):318-25. doi: 10.1016/j.pedhc.2009.09.002. Epub 2010 Jan 6.

Faraoni D, Nasr VG, DiNardo JA. Overall Hospital Cost Estimates in Children with Congenital Heart Disease: Analysis of the 2012 Kid's Inpatient Database. Pediatr Cardiol. 2016 Jan;37(1):37-43. doi: 10.1007/s00246-015-1235-0. Epub 2015 Jul 17.

Demianczyk AC, Behere SP, Thacker D, Noeder M, Delaplane EA, Pizarro C, Sood E. Social Risk Factors Impact Hospital Readmission and Outpatient Appointment Adherence for Children with Congenital Heart Disease. J Pediatr. 2019 Feb;205:35-40.e1. doi: 10.1016/j.jpeds.2018.09.038. Epub 2018 Oct 23.

Fixler DE, Pastor P, Sigman E, Eifler CW. Ethnicity and socioeconomic status: impact on the diagnosis of congenital heart disease. J Am Coll Cardiol. 1993 Jun;21(7):1722-6. doi: 10.1016/0735-1097(93)90393-f.

Nembhard WN, Salemi JL, Ethen MK, Fixler DE, Dimaggio A, Canfield MA. Racial/Ethnic disparities in risk of early childhood mortality among children with congenital heart defects. Pediatrics. 2011 May;127(5):e1128-38. doi: 10.1542/peds.2010-2702. Epub 2011 Apr 18.

DiMatteo MR, Haskard KB, Williams SL. Health beliefs, disease severity, and patient adherence: a meta-analysis. Med Care. 2007 Jun;45(6):521-8. doi: 10.1097/MLR.0b013e318032937e.

Islam S, Yasui Y, Kaul P, Mackie AS. Hospital Readmission of Patients With Congenital Heart Disease in Canada. Can J Cardiol. 2016 Aug;32(8):987.e7-987.e14. doi: 10.1016/j.cjca.2015.12.018. Epub 2015 Dec 29.

Mackie AS, Ionescu-Ittu R, Pilote L, Rahme E, Marelli AJ. Hospital readmissions in children with congenital heart disease: a population-based study. Am Heart J. 2008 Mar;155(3):577-84. doi: 10.1016/j.ahj.2007.11.003.

Kogon B, Jain A, Oster M, Woodall K, Kanter K, Kirshbom P. Risk factors associated with readmission after pediatric cardiothoracic surgery. Ann Thorac Surg. 2012 Sep;94(3):865-73. doi: 10.1016/j.athoracsur.2012.04.025. Epub 2012 Jun 8.

Saharan S, Legg AT, Armsby LB, Zubair MM, Reed RD, Langley SM. Causes of readmission after operation for congenital heart disease. Ann Thorac Surg. 2014 Nov;98(5):1667-73. doi: 10.1016/j.athoracsur.2014.05.043. Epub 2014 Aug 15.

Knowles RL, Bull C, Wren C, Dezateux C. Mortality with congenital heart defects in England and Wales, 1959-2009: exploring technological change through period and birth cohort analysis. Arch Dis Child. 2012 Oct;97(10):861-5. doi: 10.1136/archdischild-2012-301662. Epub 2012 Jun 29.

Zheng G, Wu J, Chen P, Hu Y, Zhang H, Wang J, Zeng H, Li X, Sun Y, Xu G, Wen S, Cen J, Chen J, Guo Y, Zhuang J. Characteristics of in-hospital mortality of congenital heart disease (CHD) after surgical treatment in children from 2005 to 2017: a single-center experience. BMC Pediatr. 2021 Nov 23;21(1):521. doi: 10.1186/s12887-021-02935-2.

Pasquali SK, Jacobs ML, He X, Shah SS, Peterson ED, Hall M, Gaynor JW, Hill KD, Mayer JE, Jacobs JP, Li JS. Variation in congenital heart surgery costs across hospitals. Pediatrics. 2014 Mar;133(3):e553-60. doi: 10.1542/peds.2013-2870. Epub 2014 Feb 24.

Forster AJ, Murff HJ, Peterson JF, Gandhi TK, Bates DW. The incidence and severity of adverse events affecting patients after discharge from the hospital. Ann Intern Med. 2003 Feb 4;138(3):161-7. doi: 10.7326/0003-4819-138-3-200302040-00007.

Forster AJ, Clark HD, Menard A, Dupuis N, Chernish R, Chandok N, Khan A, van Walraven C. Adverse events among medical patients after discharge from hospital. CMAJ. 2004 Feb 3;170(3):345-9. Erratum In: CMAJ. 2004 Mar 2;170(5):771.

Moore C, Wisnivesky J, Williams S, McGinn T. Medical errors related to discontinuity of care from an inpatient to an outpatient setting. J Gen Intern Med. 2003 Aug;18(8):646-51. doi: 10.1046/j.1525-1497.2003.20722.x.

Hansen LO, Young RS, Hinami K, Leung A, Williams MV. Interventions to reduce 30-day rehospitalization: a systematic review. Ann Intern Med. 2011 Oct 18;155(8):520-8. doi: 10.7326/0003-4819-155-8-201110180-00008.

Tong HJ, Qiu F, Fan L. Effect of hospital discharge plan for children with type 1 diabetes on discharge readiness, discharge education quality, and blood glucose control. World J Clin Cases. 2021 Feb 6;9(4):774-783. doi: 10.12998/wjcc.v9.i4.774.

Parikh K, Hall M, Kenyon CC, Teufel RJ 2nd, Mussman GM, Montalbano A, Gold J, Antoon JW, Subramony A, Mittal V, Morse RB, Wilson KM, Shah SS. Impact of Discharge Components on Readmission Rates for Children Hospitalized with Asthma. J Pediatr. 2018 Apr;195:175-181.e2. doi: 10.1016/j.jpeds.2017.11.062. Epub 2018 Feb 1.

Mockenhaupt R, Woodrum A. Developing evidence for structural approaches to build a culture of health: a perspective from the Robert Wood Johnson Foundation. Health Educ Behav. 2015 Apr;42(1 Suppl):15S-19S. doi: 10.1177/1090198115575100.

Fortune K, Becerra-Posada F, Buss P, Galvao LAC, Contreras A, Murphy M, Rogger C, Keahon GE, de Francisco A. Health promotion and the agenda for sustainable development, WHO Region of the Americas. Bull World Health Organ. 2018 Sep 1;96(9):621-626. doi: 10.2471/BLT.17.204404. Epub 2018 Jul 27.

Weiss ME, Sawin KJ, Gralton K, Johnson N, Klingbeil C, Lerret S, Malin S, Yakusheva O, Schiffman R. Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children. J Pediatr Nurs. 2017 May-Jun;34:58-64. doi: 10.1016/j.pedn.2016.12.021. Epub 2017 Jan 10.

Gottlieb LM, Garcia K, Wing H, Manchanda R. Clinical interventions addressing nonmedical health determinants in Medicaid managed care. Am J Manag Care. 2016 May;22(5):370-6.

Czajkowski SM, Powell LH, Adler N, Naar-King S, Reynolds KD, Hunter CM, Laraia B, Olster DH, Perna FM, Peterson JC, Epel E, Boyington JE, Charlson ME. From ideas to efficacy: The ORBIT model for developing behavioral treatments for chronic diseases. Health Psychol. 2015 Oct;34(10):971-82. doi: 10.1037/hea0000161. Epub 2015 Feb 2.

Sood E, Karpyn A, Demianczyk AC, Ryan J, Delaplane EA, Neely T, Frazier AH, Kazak AE. Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care. Pediatr Crit Care Med. 2018 Jul;19(7):626-634. doi: 10.1097/PCC.0000000000001528.

Hennink MM, Kaiser BN, Marconi VC. Code Saturation Versus Meaning Saturation: How Many Interviews Are Enough? Qual Health Res. 2017 Mar;27(4):591-608. doi: 10.1177/1049732316665344. Epub 2016 Sep 26.

Hennink MM, Kaiser BN, Weber MB. What Influences Saturation? Estimating Sample Sizes in Focus Group Research. Qual Health Res. 2019 Aug;29(10):1483-1496. doi: 10.1177/1049732318821692. Epub 2019 Jan 10.

Varaei S, Vaismoradi M, Jasper M, Faghihzadeh S. Iranian nurses self-perception -- factors influencing nursing image. J Nurs Manag. 2012 May;20(4):551-60. doi: 10.1111/j.1365-2834.2012.01397.x. Epub 2012 Feb 27.

Draucker CB, Martsolf DS, Ross R, Rusk TB. Theoretical sampling and category development in grounded theory. Qual Health Res. 2007 Oct;17(8):1137-48. doi: 10.1177/1049732307308450.

Beck CT. Grounded theory: overview and application in pediatric nursing. Issues Compr Pediatr Nurs. 1996 Jan-Mar;19(1):1-15. doi: 10.3109/01460869609026851.

Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns. 2014 Sep;96(3):395-403. doi: 10.1016/j.pec.2014.05.027. Epub 2014 Jun 12.

Vaismoradi MJ, J; Turunen, H; Snelgrove, S. Theme development in qualitative content analysis and thematic analysis. Journal of Nursing Education and Practice. 2016;6:100-110.