The meaning of cost for families of children with congenital heart disease.
ABSTRACT The purpose of this study was to describe the cost burden of congenital heart disease (CHD) and the associated social impact as experienced by families.
Qualitative methods were used to collect and interpret data. Semi-structured interviews were conducted with parents of children with various degrees of CHD complexity and socioeconomic status currently admitted for congenital heart surgery at a large tertiary care regional center.
The meaning of cost burden as defined by participants resulted in the emergence of two major categories, lifestyle change and uncertainty. Cost was described beyond monetary terms and as a result, data in each category were further clustered into three underlying subcategories labeled financial, emotional, and family burden. The child's disease complexity and parent's socioeconomic status seem to be linked to higher levels of stress experienced in terms of finances, emotional drain, and family member burden. Prenatal diagnosis was noted to trigger early discussion of financial uncertainty, often resulting in altered personal spending prior to birth.
The cost experienced by parents of children with complex CHD was described as both life-changing and uncertain. Informing families of these types of additional stressors may allow issues of finances to be considered early in the overall preparation of caring for a child with complex CHD.
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ABSTRACT: To evaluated the economic burden to families of managing chronic heart failure in children with congenital heart disease. This longitudinal study was conducted over a year. The families of children with congenital heart disease who were being managed for chronic heart failure in the clinic were recruited for the study. With the aid of a structured questionnaire, data were collected on a monthly basis for three consecutive months, on the family's monthly income, cost of anti-failure medicines, transportation and the number of man-hours spent on clinic visitation. The percentage of the mean monthly income spent on medicines, transportation and the total cost of care were also computed. Thirty two families were recruited for the study. The children were 16(50%) each of males and females with a mean age of 2.2 ± 1.7 years. The mean monthly income was $314.93 ± 271.36 while the mean cost of total care was $17.61 ± 10.58. The mean percentage of income spent on total care was 16.3 ± 26.2 % with a range of 0.7 - 122%. Families from low socioeconomic class spent significantly higher percentage of income on medicines and total care compared to those in middle or high socioeconomic classes, P = 0.0095 and 0.041 respectively. Only three (0.09%) patients had surgery for their condition. The mean percentage of income spent on care was significant and amounted to catastrophic health expenditure for a third of the families. Government input in strengthening the existing cardiac centres, establish new ones and subsidising the cost of surgery to meet the needs for open heart surgery for children with CHDs is recommended.Nigerian journal of clinical practice 01/2011; 14(1):65-9. DOI:10.4103/1119-3077.79255 · 0.41 Impact Factor
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ABSTRACT: Multiple visits for the evaluation, treatment, and follow-up of straightforward surgical problems are inconvenient, can result in lost work for the parents, and missed school for the child. We hypothesized that with proper previsit screening, patients with select diagnoses can be evaluated in an outpatient clinic setting and undergo operation the same day. Criteria were developed to identify straightforward referrals to our surgical practice for umbilical, epigastric, or inguinal hernias. Scripting was created to offer families the option of consultation and, if indicated, surgical treatment on the same day. Data collected included number of patients, cases performed, insurance status, and consultation reimbursement and surgical fees. Families were surveyed postoperatively. Sixty-one patient candidates participated. The diagnosis and indication for surgery were confirmed in 56 (92%), of which 50 underwent repair the day of their consultation. Seventy-two percent of patients had commercial insurance, whereas 28% had Medicaid. The preoperative consultation fee was reimbursed in 39 (78%) of 50 encounters (57% Medicaid, 86% commercial). All surgical cases were reimbursed. Patient and family satisfaction was high. We conclude that it is feasible to provide same-day evaluation and service for straightforward pediatric hernias with acceptable financial reimbursement and high parent satisfaction.Journal of Pediatric Surgery 01/2012; 47(1):213-6. DOI:10.1016/j.jpedsurg.2011.10.047 · 1.31 Impact Factor
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ABSTRACT: The purpose of this study was to examine the existing research on the psychological distress experienced by parents whose young children (between the ages of 0 and 5 years old) have a congenital heart defect (CHD). A more detailed understanding of the distress experienced by these parents, including stress associated with the child's age, the severity of the child's diagnosis, and parent characteristics, is vital as it would allow for more targeted and individualized support for this population to enhance parental coping strategies and increase the likelihood of more positive parent–child interactions. This review of 25 studies contributes to the parenting stress literature by focusing on parents of young children and categorizing studies by publication characteristics, research methodology, and findings. The research clearly demonstrates that parents report a great deal of stress throughout the continuum of their child's health care experience. Recommendations for future research and practice implications, such as developing a stress vulnerability model specific to parenting children with CHD, clarifying the role between interdisciplinary team members regarding provision of psychosocial support to parents, and referring parents to specific community-based ongoing social support services, are presented.Journal of Social Service Research 07/2012; DOI:10.1080/01488376.2012.696410 · 0.44 Impact Factor