Exploring challenges faced by parents of children with tuberculosis to achieve treatment success

Abstract

Introduction: Parents play an essential role in the success of their children’s tuberculosis (TB) treatment. They faced many challenges from the initial children’s health status changes until completing the TB treatment. The challenges were also described as perceived barriers, according to the Health Belief Model (HBM). This study aims to explore parents’ experiences on the challenges in achieving a successful TB treatment for their child in two districts of Selangor, Malaysia.
 Methods: The research was carried out using the phenomenology study design. In-depth interviews were conducted among purposely sample primary caregivers of children with TB disease who have completed TB treatment or still under treatment. MyTB version 2.1 data were sought from TB Unit, Selangor Health State Department for Klang and Petaling districts. The participants were selected based on the registration year of 2017 to 2019. The collected data was considered as achieving its saturation level if no new themes arise from the latest interviews session. The R-based Qualitative Data Analysis (RQDA) package version 0.2-8 was used for thematic data analysis.
 Results: The total number of participants in this study was fifteen mothers of children with TB disease. There were six main themes identified from this study, which were health symptoms challenges, TB investigation challenges, personal challenges, healthcare facilities challenges, administration medication challenges, and community challenges.
 Conclusions: Understanding the challenges faced by parents of children with TB disease is vital for improving the TB services and providing the required psychosocial support to the children’s family.

Mothers' perspectives of physical and psychological issues associated with caring for Ghanaian children living with tuberculosis: A qualitative study

“…Tuberculosis is associated with death, and it is referred to as the “ghost cough” disease ( nsamanwa ) in a Ghanaian local language (Twi) (Nketiah‐Amponsah et al, 2021). Understandably, a diagnosis of childhood TB contributes to a mother's fear that her child may die (Awaluddin et al, 2020a). It is therefore important that the fears, thoughts and worries of mothers about their children's diagnosis and well‐being are assessed and managed adequately by healthcare providers through appropriate parental involvement, counselling and education (Aarthun et al, 2019; Choudhary & Ahmed, 2019).…”

“…A few studies have explored the experiences of caregivers of children living with TB in settings such as China, Malaysia and Brazil (Awaluddin et al, 2020a;da Silva et al, 2014;Zhang et al, 2014).…”

“…Studies on the experiences of mothers who care for children living with TB suggest that their caregiver role puts them at risk of personal physical and psychological setbacks (Awaluddin et al, 2020a; da Silva et al, 2014; Zhang et al, 2014). A qualitative study by Zhang et al (2014) involving 22 parents including eight mothers of children living with TB in China revealed that mothers caring for children living with TB‐experienced tiredness on account of the direct care they had to provide to their ill children.…”

“…A few studies have explored the experiences of caregivers of children living with TB in settings such as China, Malaysia and Brazil (Awaluddin et al, 2020a; da Silva et al, 2014; Zhang et al, 2014). No studies appear to have studied the physical and psychological issues that mothers of children living with TB experience within the Ghanaian context.…”

A qualitative exploration of challenges in childhood TB patients identification and diagnosis in Bangladesh

“…Moreover, there is inadequate evidence on the barriers to identifying and diagnosing childhood TB from caregivers' and providers' perspectives. The existing literature reports only the lack of knowledge [ 13 , 14 ] of caregivers and transportation costs [ 37 ]. A study in Dhaka at the BRAC urban directly observed therapy short course (DOTS) sites reported managerial officials' frequent turnover in government, stigma, care-seeking delay, inadequate diagnostic facilities, and private practitioners’ limited involvement as challenges in the implementation of childhood TB control program [ 38 ].…”