IADR Abstract Archives
Indian Tamil Parents’ Navigating Cleft Lip/Palate Challenges: Phenomenological Qualitative study
Objectives: To explore the unique challenges experienced by Indian Tamil parents of children operated for cleft lip and/or palate
Methods: Participants: Parents of children aged 8-16 years with operated cleft lip and/or palate.
Recruitment of participants: The recruitment was done with the line list provided by the Rashtriya Bal Swasthya Karyakram (RBSK) a national program to envisage Child Health Screening and Early Intervention Services.
The study method used in this current study is Focus Group Discussion (FGD)-Qualitative approach. FGD was conducted with an interview guide focusing on experiences from anomaly scan, birth of the child upto surgery and follow up procedures. The data was recorded and transcribed. The transcribed data were analyzed with Colaizzi’s qualitative method.
Results: A collective of 16 parents engaged in separate Focus Group Discussions (FGDs), each held in three distinct districts within the state of Tamil Nadu, India. An FGD took place at the District Early Intervention Centre situated within the Government Medical College in Thiruvarur district, while the other two FGDs were held at the Primary Health Centers located in Thiruvallur and Cuddalore districts. The themes identified were about the experience of giving birth to a cleft child, access to health care, anomaly scan counseling, reasons for the delay in surgery, family support, superstitious beliefs, feeding problems, the child’s school experience to bullying/teasing, speech function and distress of the child, dental complaints, post-surgery experience, post-surgery support care and recommendations to the service providers.
Conclusions: This qualitative study delved into the lived experiences of parents whose children underwent cleft surgery and essential follow-up interventions, such as oral care, speech therapy, and psychological counseling were most neglected. By giving voice to their experiences, the study emphasizes the significance of adopting a comprehensive care strategy that addresses the holistic well-being of both the children and their families, encompassing their physical, psychological, and emotional needs.
Methods: Participants: Parents of children aged 8-16 years with operated cleft lip and/or palate.
Recruitment of participants: The recruitment was done with the line list provided by the Rashtriya Bal Swasthya Karyakram (RBSK) a national program to envisage Child Health Screening and Early Intervention Services.
The study method used in this current study is Focus Group Discussion (FGD)-Qualitative approach. FGD was conducted with an interview guide focusing on experiences from anomaly scan, birth of the child upto surgery and follow up procedures. The data was recorded and transcribed. The transcribed data were analyzed with Colaizzi’s qualitative method.
Results: A collective of 16 parents engaged in separate Focus Group Discussions (FGDs), each held in three distinct districts within the state of Tamil Nadu, India. An FGD took place at the District Early Intervention Centre situated within the Government Medical College in Thiruvarur district, while the other two FGDs were held at the Primary Health Centers located in Thiruvallur and Cuddalore districts. The themes identified were about the experience of giving birth to a cleft child, access to health care, anomaly scan counseling, reasons for the delay in surgery, family support, superstitious beliefs, feeding problems, the child’s school experience to bullying/teasing, speech function and distress of the child, dental complaints, post-surgery experience, post-surgery support care and recommendations to the service providers.
Conclusions: This qualitative study delved into the lived experiences of parents whose children underwent cleft surgery and essential follow-up interventions, such as oral care, speech therapy, and psychological counseling were most neglected. By giving voice to their experiences, the study emphasizes the significance of adopting a comprehensive care strategy that addresses the holistic well-being of both the children and their families, encompassing their physical, psychological, and emotional needs.