Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country

Abstract

Background: 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. Methods: Using 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. Results: At 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.

Postoperative health-related quality of life in children with congenital heart disease: a short-term follow-up study

“…At the same time, the quality of life is also affected by social and parental factors. The prognosis of children with a family income that can afford good treatment conditions and provide good nutritional conditions and a comfortable and safe living environment is better [ 22 , 23 ]. Access to good social health maintenance services is also an important factor in improving the quality of life of children after surgery [ 24 ].…”

Impact of educational programme on patient's health outcomes following open heart surgeries

“…Cardiac surgery types include coronary artery bypass grafting (CABG), repair or removal of the heart valve, heart transplant, and installation of machines or artificial hearts for ventricular assistance (Stigler Granados et al, 2019). So, health-related quality of life (HRQOL) is a significant indicator of long-term well-being, influenced by environmental factors such as family, culture, community norms, and available resources that better and earlier diagnostics and clinical management of congenital heart disease (CHD) have led to decreased mortality and increased achieved outcomes (Ladak et al, 2020).…”

“…So, health‐related quality of life (HRQOL) is a significant indicator of long‐term well‐being, influenced by environmental factors such as family, culture, community norms, and available resources that better and earlier diagnostics and clinical management of congenital heart disease (CHD) have led to decreased mortality and increased achieved outcomes (Ladak et al, 2020 ).…”

Validation of “Trust/Mistrust in God Scale” for Spanish Cancer Patients

“…Thus, according to Rosmarin et al (2011), a worldview based on trust in God can mitigate negative appraisals of adversity, in addition to contributing to positive religious coping and serving as a spiritual resource in the face of stressful life events. Indeed, other authors have also shown how trust in God can be a powerful religious and spiritual coping strategy (Burns 2004;Büssing et al 2021;Ladak et al 2020). In contrast, mistrust in God seems to measure the notion that God is willfully ignorant and malevolent, and is related to divine spiritual struggles, which reflect the tension between the individual and God (Rosmarin et al 2009b).…”