Children living with type 1 diabetes and congenital heart disease in the West Bank, Palestine -Self-perceived health status, sense of coherence, and the daily life experiences of these children and theri parents

Sammanfattning: Chronic diseases such as type 1 diabetes (T1D) and congenital heart disease (CHD) are lifelong conditions, need regular treatment, self management, and health care follow-ups. Growing up with these conditions affects the children’s and their parents’ lives at various levels, because of the increased burden and responsibilities imposed on them. In addition, the particular socio-cultural conditions in the Palestinian West Bank can also be assumed to influence their daily life. The overall aim was to explore the experiences of daily life in children and adolescents with T1D and CHD and their parents living in the West Bank, Palestine, and to describe self-perceived health status and sense of coherence (SOC) in these children compared with a healthy reference group. In Study I and II, a qualitative descriptive design based on individual interviews was used to explore daily life experiences in children with T1D or CHD and their parents. In Study III and IV, a quantitative approach with a cross-sectional design was used to measure self-perceived health status and SOC in children with T1D or CHD and to compare them with a healthy reference group. PedsQLTM 4.0, Generic Core Scale was used to measure the self-perceived health status, whereas the SOC-13 scale was used for SOC. In Study I, children with T1D and their parents struggled to place themselves within the context of the disease and within their social context because of the impact of stigmatization and social constraints on their daily life. In Study II, children with CHD and their parents described how their daily life was influenced negatively by societal stereotyping, low access to specialized care due to the political situation, and the children’s perceptions of their illness. Although these factors affected almost every aspect of their lives, they referred to a reliance on God facilitating their acceptance of their fate and lives. In Study III, both children with T1D and a healthy reference group reported comparable self-perceived health status but low scores regarding SOC. In adolescents with T1D, a strong SOC was associated with better self-perceived health status and more optimal glycemic control. Boys with T1D reported higher self-perceived health status than girls. In Study IV, self-perceived health status was lower in children with CHD compared to a healthy reference group. SOC was low in both groups and no differences between the groups were found. Children with a mild CHD reported a better self-perceived health status, while children who had undergone heart surgery reported lower self-perceived health status. Furthermore, a stronger SOC was associated with higher self-perceived health status in adolescents with CHD. To provide optimum care for children with T1D and CHD and their parents, health care providers need to understand the negative consequences associated with sociocultural conditions and beliefs about chronic illness. Monitoring self-perceived health status and taking the role of SOC into consideration in children with T1D and CHD may form the basis for future health care interventions for these children.