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

Ladak, Laila A.; Gallagher, Robyn; Hasan, Babar S.; Awais, Khadija; Abdullah, Ahmed; Gullick, Janice

doi:10.1186/s41687-020-00239-0

Journal of Patient-Reported Outcomes

Table 3 Coding process framework using the domains of the Social Ecological Model [11]

From: 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

Themes guided by SEM	Sub Themes	Categories	Examples of Quotations
*Intrapersonal Factors*	Expectations from CHD surgery	‣Unrealistic expectations of surgery	“I thought after surgery … I wouldn’t have to worry about his heart problem and health anymore”
		‣Impact of residual CHD on daily functioning	“He is not able to play … gets angry …”
		‣Education as an important individual strategic resource	“He should get education from a good institute and achieve a good position in life”
*Interpersonal Factors*	Health literacy and resource issues	‣Poor health literacy within social networks	“Where did she get this disease from, what was the reason? Was it by birth or has it occurred now?”
		‣Strong kinship ties as a resource	“They [extended family] are concerned that my child should experience a good healthy life … The first thing they ask about is my child’s health”
		‣Family poverty	“I blame myself … My husband also feels so guilty that we are not able to fulfil her needs because of financial constraints”.
		‣Mothers as sole primary care providers	“The mother and the suffering child are left alone to fight and face the problems …”
Institutional Factors	Lack of parental and teachers’ counselling	‣Unclear expectations at school	“Teachers should be educated about the activities they [child with CHD] can perform … Or if any emergency situation arises, what they should do”
		‣Poor access to family counselling	“Parents should be told … not to plan for the next baby … If these things had been communicated … we would not have planned our baby”
		‣Poor clinical educational resources	“I wish these [post-surgery long term health issues] were communicated … We would have been mentally prepared for it.”
Community and social–cultural factors	Religion and gender issues	‣Religion and trust in God	“Allah has given this disease, so He is the one who will cure it …”
Community and social–cultural factors	Religion and gender issues	‣CHD as a gendered experience	“… they [people] said that since she is a girl, there is no need for her to go through the surgery... and spend the huge cost”
*Public Policy Factors*	Lack of CHD facilities across the country	‣Lack of antenatal and CHD services	“There are very few hospitals for children with heart problems [in the country …”
*Public Policy Factors*	Lack of CHD facilities across the country	‣Potential for integrated local services and resources	“… workshops, training programs or activities arranged for children as well as parents.”

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