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Discovering dad: paternal roles, responsibilities, and support needs as defined by fathers of children with complex cardiac conditions perioperatively

Published online by Cambridge University Press:  08 August 2019

Jacob Robinson ,
David Huskey ,
Sabrina Schalley ,
Dale Wratchford ,
James Hammel  and
Meaghann S. Weaver
Jacob Robinson
Affiliation:
Division of Pediatric Palliative Care, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
David Huskey
Affiliation:
Division of Spiritual Care and Ministry, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
Sabrina Schalley
Affiliation:
Division of Social Work, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
Dale Wratchford
Affiliation:
Division of Spiritual Care and Ministry, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
James Hammel
Affiliation:
Division of Cardiac Surgery, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
Meaghann S. Weaver*
Affiliation:
Division of Pediatric Palliative Care, Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
*
Author for correspondence: M. S. Weaver, MD, MPH, FAAP, Division of Pediatric Palliative Care, Children’s Hospital and Medical Center Omaha, 8200 Dodge Street, Omaha, NE 68114, USA. Tel: 402 955 5432; Fax: 402 955 4184; E-mail: meweaver@childrensomaha.org
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Abstract

Background:

Understanding perceptions of family caregivers’ roles and responsibilities regarding their child with complex cardiac needs has potential to help care teams better support parents. Paternal experience has been under-explored in pediatric cardiac cohorts.

Methods:

Ten fathers of children undergoing cardiac surgery completed quantitative surveys on their knowledge needs and preferred format of communication. In face-to-face recorded interviews, they responded to open-ended questions about the definition of being a good father to a child with a complex cardiac condition, perceived paternal responsibilities, personal growth as a parent to a child with a complex heart condition, support needs, and recommendations to medical staff for paternal inclusion. Semantic content analysis was utilised. The study reports strictly followed COnsolidated criteria for REporting Qualitative research guidelines.

Results:

The fathers reported high preference for knowledge about the child’s heart condition, communication about the treatment plan, and desire for inclusion in the care of their child. Paternal role was defined thematically as: providing a supportive presence, being there, offering bonded insight, serving as strong provider, and acting as an informed advocate. The fathers revealed that their responsibilities sometimes conflicted as they strove to serve as an emotional and economic stabiliser for their family, while also wanting to be foundationally present for their child perioperatively.

Conclusion:

This study provides insight into paternal experience and strategies for paternal inclusion. This summary of the self-defined experience of the fathers of pediatric cardiac patients offers constructive and specific advice for medical teams.

Keywords

Pediatric cardiologyqualitative researchfamily communicationpediatric palliative
Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 9 , September 2019 , pp. 1143 - 1148
Copyright
© Cambridge University Press 2019 

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References

Feudtner, C, Walter, JK, Faerber, JA, et al. Good-parent beliefs of parents of seriously ill children. JAMA Pediatr 2015; 169: 39–47.CrossRefGoogle ScholarPubMed
Hinds, PS, Oakes, LL, Hicks, J, et al. “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol 2009; 27: 5979–5985.CrossRefGoogle ScholarPubMed
October, TW, Fisher, KR, Feudtner, C, Hinds, PS. The parent perspective: “being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med 2014; 15: 291–298.CrossRefGoogle ScholarPubMed
Ware, J, Raval, H. A qualitative investigation of fathers’ experiences of looking after a child with a life-limiting illness, in process and in retrospect. Clin Child Psychol Psychiatry 2007; 12: 549–565.CrossRefGoogle ScholarPubMed
Nicholas, DB, Beaune, L, Barrera, M, Blumberg, J, Belletrutti, M. Examining the experiences of fathers of children with a life-limiting illness. J Soc Work End Life Palliat Care 2016; 12: 126–144.CrossRefGoogle ScholarPubMed
Aho, AL, Tarkka, MT, Astedt-Kurki, P, Kaunonen, M. Fathers’ grief after the death of a child. Issues Ment Health Nurs 2006; 27: 647–663.CrossRefGoogle ScholarPubMed
Davies, B, Baird, J, Gudmundsdottir, M. Moving family-centered care forward: bereaved fathers’ perspectives. J Hosp Palliat Nurs 2013; 3: 15.Google Scholar
Jones, JB, Neil-Urban, S. Father to father: focus groups of fathers of children with cancer. Soc Work Health Care 2003; 37: 41–61.CrossRefGoogle ScholarPubMed
Schneider, M, Steele, R, Cadell, S, Hemsworth, D. Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses. J Pediatr Nurs 2011; 26: 186–199.CrossRefGoogle ScholarPubMed
Scrimin, S, Haynes, M, Altoe, G, Bornstein, MH, Axia, G. Anxiety and stress in mothers and fathers in the 24 h after their child’s surgery. Child Care Health Dev 2009; 35: 227–233.CrossRefGoogle ScholarPubMed
Sood, E, Karpyn, A, Demianczyk, AC, et al. Mothers and fathers experience stress of congenital heart disease differently: recommendations for pediatric critical care. Pediatr Crit Care Med 2018; 19: 626–634.Google ScholarPubMed
Kim, J, Cha, C. Experience of fathers of neonates with congenital heart disease in South Korea. Heart Lung 2017; 46: 439–443.CrossRefGoogle ScholarPubMed
Woolf-King, SE, Arnold, E, Weiss, S, Teitel, D. “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. J Clin Nurs 2018; 27: 2785–2794.CrossRefGoogle ScholarPubMed
Paramo-Rodriguez, L, Mas Pons, R, Cavero-Carbonell, C, Martos-Jimenez, C, Zurriaga, O, Barona Vilar, C. An open heart: experiences of the parents of children with congenital heart disease. Gac Sanit 2015; 29: 445–450.Google ScholarPubMed
Franich-Ray, C, Bright, MA, Anderson, V, et al. Trauma reactions in mothers and fathers after their infant’s cardiac surgery. J Pediatr Psychol 2013; 38: 494–505.CrossRefGoogle ScholarPubMed
Gregory, MRB, Prouhet, PM, Russell, CL, Pfannenstiel, BR. Quality of life for parents of children with congenital heart defect: a systematic review. J Cardiovasc Nurs 2018; 33: 363–371.Google ScholarPubMed
Weaver, MS, Baker, JN, Gattuso, JS, Gibson, DV, Sykes, AD, Hinds, PS. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer 2015; 121: 4416–4424.CrossRefGoogle ScholarPubMed
Beatty, P, Willis, G. Research syntheses: the practice of cognitive interviewing. Public Opin Q 71: 287–311.CrossRefGoogle Scholar
Mays, N, Pope, C. Qualitative research in health care. Assessing quality in qualitative research. Br Med J 2000; 320: 50–52.CrossRefGoogle ScholarPubMed
Krippendorff, K. Content Analysis: An Introduction to Its Methodology, 3rd edn. SAGE, Thousand Oaks, 2013.Google Scholar
Wakefield, CE, Drew, D, Ellis, SJ, Doolan, EL, McLoone, JK, Cohn, RJ. What they’re not telling you: A new scale to measure grandparents’ information needs when their grandchild has cancer. Patient Educ Couns 2014; 94: 351–355.CrossRefGoogle Scholar
Kuper, A, Reeves, S, Levinson, W. An introduction to reading and appraising qualitative research. Br Med J 2008; 337: a288.CrossRefGoogle ScholarPubMed
Shorey, S, He, HG, Morelius, E. Skin-to-skin contact by fathers and the impact on infant and paternal outcomes: an integrative review. Midwifery 2016; 40: 207–217.CrossRefGoogle Scholar
Kow, S, Groot, J, Puthenparampil, J, et al. The impact of “mom/dad of the day” cards, newborn heart auscultation, and father skin-to-skin care on parent-newborn bonding. Clin Pediatr (Phila) 2019; 58: 349–353.CrossRefGoogle ScholarPubMed
Wilson, V, Chando, S. Parental experiences with a hospital-based bead programme for children with congenital heart disease. J Clin Nurs 2015; 24: 439–446.CrossRefGoogle ScholarPubMed
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