Conflicting Responses: The Experiences of Fathers of Infants Diagnosed With Severe Congenital Heart Disease

Abstract

purpose. To explore the experiences of fathers of infants newly diagnosed with severe congenital heart disease. design. An analysis of qualitative data collected as part of a larger longitudinal study of parenting the medically fragile infant. participants. Eight fathers whose infants were hospitalized for severe congenital heart disease, were technology dependent at time of enrollment, and were expected to have serious chronic health problems at discharge. data collection measures. Semistructured interviews in the hospital and the home until the child reached 15 months adjusted age. results. Findings indicate that fathers experience four interrelated conflicting reactions: the joy of seeing the child born and becoming a father, plus the sadness and loss associated with the baby's illness; the challenge of becoming attached while dealing with fears about the infant's vulnerability and potential death; the need to try to maintain control while feeling a loss of control; and the struggle to remain strong for others while hiding their intense emotions. These findings extend the previous limited research about fathers by identifying the unique conflicts fathers of seriously ill infants experience in coping with the child's diagnosis and treatment. Findings have implications for intervening with fathers during the early diagnostic phase of a serious illness, particularly serious congenital heart disease.

The Primacy of Work and Fathering Preterm Infants

“…55 In a qualitative study of fathers and infants with severe congenital heart disease, work helped fathers cope by enabling them to maintain a sense of control. 56 At some point in the interviews, all of the fathers talked about their inability to do something about their situation. Going to work seemed to satisfy their need for doing, a need that would go essentially unmet in the NICU.…”

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

“…408,414,415 Mothers are more likely to report psychological distress than fathers 416 but a small study, involving in-depth interviews, identified similar emotional distress amongst fathers of children with congenital heart defects. 372 Fathers expressed joy at the birth tempered by "intense distress over the loss of the expected normal child" and fears about the outcome of surgery. Fathers tried to maintain control, often through work, and to provide support to their partners, "I didn't want my girlfriend to see me crying … to try to be strong for her.…”

“…371 The degree to which uncertainty must be tamed will vary with individuals and perhaps with gender: fathers of children with congenital heart disease demonstrate a strong need to maintain control in the face of their female partner's emotion and anxiety. 372 It may therefore be important to view parents' understanding of screening test results, and the actions that they subsequently take, in terms of a discourse between certainty and uncertainty rather than as a function of inadequate information provision.…”

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

“…Each situation affects the parents of ill children differently. Taking care of an incurably ill child often puts a parent in a hard situation and requires an assessment of the child's needs at every stage of being with it [12][13][14][15][16]. In the case of EB, there are practically no such studies at all.…”