Abstract
BackgroundHealth related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery.MethodsUsing a descriptive, qualitative design, semi-structured interviews of children/adolescents who had CHD surgery in this low-middle income country (LMIC) were collected between July to December 2017. There were 20 families enrolled, which included 18 parent dyads (mother and father) and two single mothers, making a total of 38 participants. Initial inductive analysis was further refined using the Social Ecological Model as an analytic lens.ResultsAt the intrapersonal level, unrealistic expectations of surgery, residual CHD symptoms and difficulty maintaining educational progress were of great concern. There were low levels of health literacy and understanding about CHD among family and friends, however, strong kinship ties were an important resource at the interpersonal level. These families lived in poverty and mothers often carried the sole burden of care for their sick children. At the institutional level, there were unclear expectations of the child’s needs at school, and parents had poor access to psychological, family-planning and genetic counselling, and poor access to CHD education resources. At a sociocultural level, religion and trust in God were important coping factors, however, CHD was a gendered experience with particular concerns around scarring and the marriageability of girls. Parents noted the deficit of antenatal and specialist CHD services and felt the consequence of a lack of a universal health care system at the public policy level.ConclusionSocio-ecological factors have the potential to explain the issues and challenges that children living in LMIC experience with CHD after surgery. The study findings will help to inform future interventions to be implemented in countries like Pakistan.
Highlights
Better and earlier diagnostics and clinical management of congenital heart disease (CHD) have led to decreased mortality and increased survival [1]
Socio-ecological factors have the potential to explain the issues and challenges that children living in low-middle income country (LMIC) experience with CHD after surgery
Reduced Health related quality of life (HRQOL) in children and adolescents with CHD is well-documented in high-income countries (HICs) [3, 4], data is lacking from low middle income countries (LMICs) [5]
Summary
Better and earlier diagnostics and clinical management of congenital heart disease (CHD) have led to decreased mortality and increased survival [1]. CHD patients frequently need life-long care, making optimal health related quality of life (HRQOL) an important goal [2]. This paper reports qualitative findings from the larger program of mixed methods research of HRQOL in CHD surgical patients in Pakistan. Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery
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