Assessment of the Effect of Family-Centered Care on Anxiety and Care Burden in Parents of Children Undergoing Heart Transplantation

Document Type : Original Article

Authors

1 Emergency Medicine Management Research Center, Iran University of Medical Sciences, Ali Asghar Children Hospital, Tehran, IR Iran.

2 Rajaie Cardiovascular Medical and Research Center, Iran University of Medical Sciences, Tehran, IR Iran.

3 Department of Cardiology, Shariati Hospital, Tehran University of Medical Sciences, Tehran, IR Iran.

Abstract

Background: The frequency of organ transplantation is increasing, leading to increased stress in patients and families. Family performance assessment can express psychological and health consequences for children and their families and provide an opportunity for targeted interventions.
Methods: After necessary permits were obtained, the cases were randomly divided into experimental and control groups. Fifty parents of children who underwent heart transplantation participated in the research. Then, after the identification of the subjects in the experimental and control groups, the experimental group was subjected to the family-centered model. Following the completion of the training and 1 month later, anxiety and care-burden questionnaires were distributed to the experimental and control groups. Finally, the data obtained from the questionnaires were collected and analyzed.
Results: Fifty individuals participated in this study. The results of the independent t test showed no significant difference concerning anxiety among parents before and after the intervention between the 2 study groups (P=0.217). Care burden was less in the intervention group than in the controls (P=0.039).
Conclusions: After training, anxiety and care burden in the intervention group improved compared with the control group. Information support of patients’ families will help them better adapt to stressful situations. Educating patients and their families can increase their information and reduce their anxiety. (Iranian Heart Journal 2022; 23(2): 87-95)

Keywords


  1. Pillai HS, Ganapathi S. Heart failure in South Asia. Current cardiology reviews. 2013; 9(2):102-11.
  2. Goldberg RJ, Ciampa J, Lessard D, Meyer TE, Spencer FA. Long-term survival after heart failure: a contemporary population-based perspective. Archives of internal medicine. 2007; 167(5):490-6.
  3. Ahmadi A, Soori H, Mobasheri M, Etemad K, Khaledifar A. Heart failure, the outcomes, predictive and related factors in Iran. Journal of Mazandaran University of Medical Sciences. 2014; 24(118):180-8.
  4. Dipchand AI. Current state of pediatric cardiac transplantation. Annals of cardiothoracic surgery. 2018; 7(1):31.
  5. Cousino MK, Rea KE, Schumacher KR, Magee JC, Fredericks EM. A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatric Transplantation. 2017; 21(3):e12900.
  6. Niemitz M, Gunst DC, Hövels-Gürich HH, Hofbeck M, Kaulitz R, Galm C, Berger F, Nagdyman N, Stiller B, Borth-Bruhns T. Predictors of health-related quality of life in children with chronic heart disease. Cardiology in the Young. 2017; 27(8):1455-64.
  7. Dipchand AI, Kirk R, Mahle WT, Tresler MA, Naftel DC, Pahl E, Miyamoto SD, Blume E, Guleserian KJ, White‐Williams C. Ten yr of pediatric heart transplantation: a report from the Pediatric Heart Transplant Study. Pediatric transplantation. 2013; 17(2):99-111.
  8. McCusker CG, Doherty NN, Molloy B, Casey F, Rooney N, Mulholland C, Sands A, Craig B, Stewart M. Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Archives of disease in childhood. 2007; 92(2):137-41. doi.10.1136/adc.2005.092320.
  9. Green A, Meaux J, Huett A, Ainley K. Constantly responsible, constantly worried, constantly blessed: Parenting after pediatric heart transplant. Progress in Transplantation. 2009; 19(2):122-7.
  10. Lerret SM, Weiss ME, Stendahl G, Chapman S, Neighbors K, Amsden K, Lokar J, Voit A, Menendez J, Alonso EM. Transition from hospital to home following pediatric solid organ transplant: qualitative findings of parent experience. Pediatric transplantation. 2014; 18(5):527-37.
  11. Utens EM, Versluis-Den Bieman HJ, Verhulst FC, Witsenburg M, Bogers AJ, Hess J. Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiology in the Young. 2000; 10(3):239-44.
  12. Davis CC, Brown RT, Bakeman R, Campbell R. Psychological adaptation and adjustment of mothers of children with congenital heart disease: Stress, coping, and family functioning. Journal of Pediatric psychology. 1998; 23(4):219-28.
  13. Doherty N, McCusker CG, Molloy B, Mulholland C, Rooney N, Craig B, Sands A, Stewart M, Casey F. Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. Journal of Reproductive and Infant Psychology. 2009; 27(4):390-400.
  14. Farley LM, DeMaso DR, D’Angelo E, Kinnamon C, Bastardi H, Hill CE, Blume ED, Logan DE. Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation. The Journal of heart and lung transplantation. 2007; 26(2):120-6.
  15. Stone D, Banerjee M, Dupuis J, Leleszi J, Allasio D, Singh TP. Association of parental pretransplant psychosocial assessment with post‐transplant morbidity in pediatric heart transplant recipients. Pediatric transplantation. 2006; 10(5):602-7.
  16. Kobayashi D, Turner DR, Forbes TJ, Aggarwal S. Parental anxiety among children undergoing cardiac catheterisation. Cardiology in the Young. 2018; 28(2):315-21.
  17. Goldberg S, Janus M, Washington J, Simmons RJ, MacLusky I, Fowler RS. Prediction of preschool behavioral problems in healthy and pediatric samples. Journal of developmental and behavioral pediatrics. 1997.
  18. McCusker CG, Doherty NN, Molloy B, Casey F, Rooney N, Mulholland C, Sands A, Craig B, Stewart M. Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Archives of disease in childhood. 2007; 92(2):137-41.
  19. Matsushita M. Psychosocial Issues in Pediatric Organ Transplant and Child Life Support for Children and Families: Mills College; 2018.
  20. Floyd JG. Families of Heart Transplant Recipients Adaptation: A Case Study with Implications for Nursing: University of Phoenix; 2018.
  21. Myaskovsky L, Posluszny DM, Schulz R, DiMartini AF, Switzer GE, Dabbs AD, McNulty ML, Kormos RL, Toyoda Y, Dew MA. Predictors and outcomes of health‐related quality of life in caregivers of cardiothoracic transplant recipients. American Journal of Transplantation. 2012; 12(12):3387-97.
  22. Sadala MLA, Stolf NAG. Heart transplantation experiences: a phenomenological approach. Journal of clinical nursing. 2008; 17(7b):217-25.
  23. Kuhlthau KA, Bloom S, Van Cleave J, Knapp AA, Romm D, Klatka K, Homer CJ, Newacheck PW, Perrin JM. Evidence for family-centered care for children with special health care needs: a systematic review. Academic pediatrics. 2011; 11(2):136-43. e8.
  24. Melnyk BM, Alpert-Gillis L, Feinstein NF, Crean HF, Johnson J, Fairbanks E, Small L, Rubenstein J, Slota M, Corbo-Richert B. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics. 2004; 113(6):e597-e607.
  25. Wells N. Historical perspective on family-centered care. Academic Pediatrics. 2011; 11(2):100-2.
  26. Klassen A, Dix D, Cano S, Papsdorf M, Sung L, Klaassen R. Evaluating family‐centred service in paediatric oncology with the measure of processes of care (MPOC‐20). Child: care, health and development. 2009; 35(1):16-22.
  27. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. Interventions with family caregivers of cancer patients: meta‐analysis of randomized trials. CA: a cancer journal for clinicians. 2010; 60(5):317-39.
  28. Sanaie N, Nejati S, Zolfaghari M, Alhani F, KazemNejad A. The effect of family-centered empowerment in self efficacy and self esteem in patients undergoing coronary bypass graft surgery. Journal of Research Development in Nursing & Midwifery. 2013; 10(2):44-53.
  29. Allen D, Scarinci N, Hickson L. Effects of Patient-and Family-Centered Care for Young Adults With Chronic Health Conditions and Their Family Members: A Systematic Review. Emerging Adulthood. 2019:2167696819883458.
  30. Blanton S, Scheibe DC, Rutledge AH, Regan B, O’Sullivan CS, Clark PC. Family-centered care during constraint-induced therapy after chronic stroke: A feasibility study. Rehabilitation nursing: the official journal of the Association of Rehabilitation Nurses. 2019; 44(6):349.
  31. Everhart JL, Haskell H, Khan A. Patient-and family-centered care: leveraging best practices to improve the care of hospitalized children. Pediatric Clinics. 2019; 66(4):775-89.
  32. Haskell H, Mannix ME, James JT, Mayer D. Parents and families as partners in the care of pediatric cardiology patients. Progress in Pediatric Cardiology. 2012; 33(1):67-72.
  33. Brosig C, Yang K, Hoffmann RG, Dasgupta M, Mussatto K. The role of psychology in a pediatric outpatient cardiology setting: preliminary results from a new clinical program. Journal of clinical psychology in medical settings. 2014; 21(4):337-46.
  34. Ruggiero KM, Hickey PA, Leger RR, Vessey JA, Hayman LL. Parental perceptions of disease‐severity and health‐related quality of life in school‐age children with congenital heart disease. Journal for Specialists in Pediatric Nursing. 2018; 23(1):e12204.
  35. Young LE, Molzahn A, Starzomski R, Budz B. Families and heart transplantation: reversing the trajectory of end stage heart disease. Canadian Journal of Cardiovascular Nursing. 2010; 20(2).
  36. Keshvari M, Hedayati B, Moeini M, Alhani F. A survey on the effect of implementation of a family-centered empowerment model on blood pressure and empowerment dimensions in the elderly people with hypertension. Journal of Education and Health Promotion. 2015; 4.
  37. Ebrahimi HK, Sohrabi S, Jafarnejad S, Iranmanesh S, Esmaeilian S. Evaluation of the Effect of Massage by the Mother on the Pain of Term Infants after Care Measures. Systematic Reviews in Pharmacy. 2020; 11(9):899-904.