Enhancing the Clinical Patient Care of Adults with Congenital Heart Disease (CHD) by Understanding Family Planning Decisions in this Population

Background: Sister Calista Roy first developed the Roy Adaptation Model (RAM) during the 1960’s, and has continued to further refine, clarify, and extend the concepts over the years (Roy, 1997; 2009). According to Roy, the purpose of nursing is to understand people in order to maximize health and living to the individual’s full potential. The goal of nursing is to promote adaptation. The RAM guides the understanding of how an individual adapts to a situation (Roy, 2009; 2011; Roy & Andrews, 1999). The RAM has guided both quantitative and qualitative research in numerous settings (Perrett, 2007; Phillips, 2002; Roy, 2011).

Cardiovascular congenital defects affect 1% of all infants born in the United Sates regardless of race (Hoffman & Kaplan, 2002; Xu, Kochanek, & Tejada-Vera, 2009). Congenital heart disease (CHD) patients are living longer into adulthood, increasing the possibility of childbearing (Gilboa, Salemi, Nembhard, Fixler & Correa, 2010; Warnes et al., 2008). Family planning decisions include any decision regarding pregnancy, surrogacy, adoption, or sterilization. Family planning decisions can elicit feelings of fear and anxiety, necessitating adaptation to the personal situation of the adult with CHD. This study described the personal narrative experience of adult women with CHD, of childbearing age, and their family planning decisions. This presentation will use the RAM to describe family planning decisions of the adult with CHD in order to increase awareness and promote enhanced clinical, patient, and educational outcomes.

Methods: Narrative inquiry, guided by the RAM, was chosen for this study because it is appropriate to describe the reproductive decisions of adults with CHD. The underlying assumptions associated with the theory, and the RAM’s focus on the individual experience, guided the development of the interview schedule. Interview questions were derived from the major concepts of stimuli, coping mechanisms, adaptive modes, and output behaviors in the RAM. The cognator coping process and the four cognitive emotive channels also guided the interview, along with the role function, and self-concept modes of adaptation.

Results: The final sample included 17 adult females, between 24 and 41 years of age, living in 10 U.S. states. The majority of participants were White, married, and had severe types of CHD. Findings from this study, suggest that the stimuli, or circumstances and influences that determine family planning, was wanting children.  The coping mechanism from the RAM used for the study, was the cognator subsystem.  This subsystem stores, relates, and responds to the stimuli through perceptual and information processing, learning, judgment and emotion (Roy, 2009).  Having children is an emotional decision, however the women in the study chose to gather information and learn more about options for family planning, in order to make a family planning decision. 

Adaptation is the use of conscious awareness and choice to respond and integrate to environmental changes (Roy, 2009).  The woman with CHD must be consciously aware of any information regarding family planning in order to choose an option and adapt to any changes in health condition.  The adaptive mode concepts of role function and self-concept identity were included in the study.  Role function, as a part of adaptation, is concerned with how one feels they are expected to behave in society (Roy, 2009).  The self-concept identity mode of adaptation includes beliefs about the physical and personal self and self-ideal (Roy, 2009).  The women in the study, considered their familial and societal role, and any personal self and self-ideal beliefs when making a family planning decision. These women had concerns with how their personal self and self-ideal fit into social, familial, and spousal expectations.  The output behavior of the family planning decision was an ineffective response or an adaptive response.  An ineffective family planning decision could potentially threaten survival.  An adaptive family planning decision would promote the health and integrity of the women with CHD. 

Conclusions: The findings from the study support the need for more research regarding family planning and information communicated to the adult with CHD. Women with CHD must be aware of their condition and the personal and physical consequences of each choice, to make an informed adaptive family planning decision. Women with CHD desire more information regarding family planning options. To maximize the clinical, patient, and educational outcomes, family planning should be incorporated into primary care. Managing care with the inclusion of a holistic viewpoint for this growing population is increasingly important.