A descriptive, cross-sectional, correlational exploration of perceived stress, quality of life, and family functioning in parents of a child with congenital heart disease: The PinCHeD Study
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Background: As survival rates for infants born with severe forms of cardiac disease improve, attention is directed to evaluating factors that affect the child’s short- and long-term outcomes, including parental stress, quality of life, and family functioning. Facing the unique struggles of having a child with congenital heart disease (CHD) can often result in high stress for the child, their parents, and other family members and may result in adverse effects in family functioning. Mothers of a child with CHD tend to report higher levels of stress and poorer quality of life and family functioning when compared to mothers of heart-healthy children or children with other chronic illnesses. Paternal perspectives when having a child with CHD have been understudied in comparison to mothers of a child with CHD. Purpose: The purpose of this descriptive, correlational, cross-sectional study was to explore parental perceptions of stress, quality of life, and family functioning when having a child with CHD. Factors that influence parental stress, quality of life, and family functioning when having a child with CHD are described, and relationships between the perceived factors and comparisons between the perceptions of mothers and fathers were made. relationships being examined. McCubbin and Patterson’s (1983a, 1983b) double ABCX theory of family adjustment and adaptation was chosen as the framework for this study. Methods: A purposive sample of 62 parents of a child with a CHD below six years of age, who had received neurodevelopmental care from the Cardiac Neurodevelopmental program at Children’s Mercy Hospital in Kansas City, Missouri were included in the study. The parents completed the following instruments: The Pediatric Inventory for Parents (PIP), The Pediatric Quality of Life Inventory™ Family Impact Module (PedsQL™ FIM), and a demographics survey. Results: Thirty-one parent pairs participated in this study. The mean age for mothers and fathers were 36.68, ±5.353 and 38.48, ±5.941, respectively. Race and ethnicity of the parent population was largely homogeneous, with mothers (n = 31, 90.3%) and fathers (n = 31, 93.5%) being of White race, and, of parents who reported ethnicity, mothers, (n = 19, 100% White) and fathers, (n = 21, 54.8% White; 12.9% Hispanic or Latino). The mean education level for mothers and fathers was just under that of a bachelor’s degree (mothers μ = 9.90, SD= 1.720) (fathers μ = 9.61, SD = 1.706). Parent pairs had a mean relationship length of 11.37 years. The children with CHD of the participating parents were mostly male (n = 19, 61%). The child’s mean age at time of parent survey completion was 4.83 years and have 18 different fundamental CHD diagnoses among the sample. Among 62 parents of 31 children with CHD, all subscale and summary scale median stress scores for fathers fell within the low stress range except for total frequency of stress (n =31, Mdn = 86.00, IQR = 35), which fell within the moderate stress range. Mothers reported median scores in the low stress range for all subscales except for the following subscales that had scores in the moderate stress range: emotional distress frequency (n = 31, Mdn = 33.00, IQR = 118), emotional distress difficulty (n =31, Mdn = 37.00, IQR = 20), total frequency (n = 31, Mdn = 86.00, IQR = 47), and total difficulty (n = 31, Mdn = 86.00, IQR = 47). There was a statistically significant difference (Z = -2.30, p = 0.02) in the role functioning subscale where fathers (n = 31, Mdn = 16.00, IQR = 10) reported less difficulty in role functioning than mothers (n = 31, Mdn = 21.00, IQR = 16). In regards to quality of life, fathers reported high levels of quality of life in all subscales and summary scales, and mothers reported high levels of quality of life in all subscales except emotional functioning, worry, and the health related-quality of life (HRQOL) summary scale, which were all in the moderate range. Statistically significant scores were found in emotional functioning, where fathers reported statistically significant (Z = -2.52, p = 0.01) better emotional functioning (n = 29, Mdn = 450.00, IQR = 162) in comparison to mothers (n = 29, Mdn = 350.00, IQR = 250), and in communication, where fathers reported statistically significant (Z = -2.38, p = 0.02) better communication (n = 29, Mdn = 275.00, IQR = 100) in comparison to mothers (n = 29, Mdn = 225.00, IQR = 137.5). There were no statistically significant differences between family functioning scores between mothers and fathers. All measured factors of parental stress and quality of life were found to have statistically significant relationships with family functioning (p ≤ 0.05). Regarding the relationship between stress and family functioning, fathers of a child with CHD reported lower mean scores in every PIP subscale and summary scale compared to mothers. Regarding the relationship between quality of life and family functioning, the PedsQL-FIM quality of life summary score and family functioning summary scores are positively correlated (r(58) = 0.84, p = 0.00). There were no statistically significant relationships between the severity of the child’s heart defect type, as measured by the STAT and parent reports of stress, quality of life, and family functioning (p < 0.05). Additional analyses determined time since most recent cardiopulmonary bypass surgery had a positive association on communication of both parents (r(58) = 0.275, p = 0.03), and fathers of a child with CHD (r(28) = 0.396, p = 0.03). Regarding the frequency of past cardiopulmonary bypass (CPB) procedures, the only statistically significant difference (U = 3.00, p = 0.007, r = -0.63) found was among fathers of a child who had had one CBP procedure and fathers of a child who had had four (n = 4, Mdn = 25.00, IQR = 4) CBP surgeries when compared to those whose child had had only one CBP surgery (n = 14, Mdn = 17.00, IQR = 7). Having a child with CHD and abnormal brain imaging negatively influenced many aspects of their parents’ quality of life and family functioning (p < 0.05): physical function (r(58) = -0.296, p = 0.02); social functioning (r(58) = -0.254, p = 0.05); worry (r(58) = -0.281, p = 0.03); daily activities (r(58) = -0.314, p = 0.01); parent HRQL summary score (r(58) = -0.260, p = 0.04); family functioning summary score (r(58) = -0.260, p = 0.05); and total FIM score (r(58) = -0.267, p = 0.04). When their child had received early intervention services, there were statistically significant associations in all of the parents’ reports of worry, (r(58) = -0.281, p = 0.03); and daily activities, (r (58) = -0.328, p = 0.01). For gender-based sub groups, fathers had statistically significant associations with worry (r(29) = -0.374, p = 0.04), and mothers had statistically significant associations found with the daily activities subscale (r(29) = -0.393, p = 0.03). Discussion: The differences between fathers and mothers of a child with CHD were not clinically meaningful. The descriptive statistics for scaled and summary scores indicated that parents who report better outcomes in their stress and QOL also report better overall family functioning and vice versa. These results indicated that parent perceptions of their stress, QOL, or family’s functioning were not significantly impacted by the severity of the child’s heart defect; therefore, severity of CHD type should not be used to predict which parents may experience high levels of stress or poorer QOL and family functioning. Results also demonstrated as more time passed, QOL for parents improved and may serve as an indicator of parents developing bonadaptation related to their child’s health condition. Having a child with CHD and a known developmental delay or brain injury may serve as a better indicator for identification of parents and families who will benefit from supportive interventions. Conclusions: This pilot study demonstrated feasibility for additional research about the experiences among parents of a child with CHD to understand their needs for support, and to determine if fathers report similar outcomes as mothers, who are much more prevalent in research addressing parental outcomes when having a child with CHD. Longitudinal and interventional studies will assist in determining timing and effectiveness of supportive interventions for parents of a child with CHD. Parent-supportive policies will benefit from additional father-inclusive research and advocacy.
Table of Contents
Introduction -- Systematic review of literature -- Theoretical framework and methodology -- Results -- Discussion -- Appendix A. instruments used -- Appendix B. Letters of support and permission
Ph.D. (Doctor of Philosophy)