Qualitative analysis of social support for caregivers of children with neurodevelopmental disorders in South India.

BACKGROUND: Despite its importance, limited formal social supports are available for caregivers of children with neurodevelopmental disorders (NDDs) navigating rehabilitation and caregiving in low-resource contexts. The current study investigates the social support sources and coping processes of caregivers of children with NDD at a rural rehabilitation center in South India. An emphasis is placed on interactions between the study participants and families of other children with NDD receiving services at the center. METHODS AND PROCEDURE: A constructivist grounded theory methodology was adopted. Data analysis was based on data obtained from twenty-two parents obtaining rehabilitation services in the center over two phases. OUTCOMES AND RESULTS: Constant comparative analysis of caregivers' perceptions and experiences generated a theoretical framework of the long-term emergence of social support and coping, comprising three subcategories: accessing service, gaining acceptance and experiencing support at a grassroots level, and coping at a grassroots level. CONCLUSIONS AND IMPLICATIONS: Findings illustrate the need for and benefit of supporting caregivers of children with NDD to find informal social support. Critical considerations for rehabilitation providers, researchers, and policymakers to facilitate caregivers' formal and informal social support and coping skills are discussed.

Parenting individuals with intellectual and developmental disabilities in South India.

PURPOSE: There is limited research on the needs and expectations of parents of children with Intellectual and Developmental Disabilities (IDD) and associated complex communication needs (CCNs) in South India. The current paper will present the findings from a study that explored parents' needs and expectations, including those related to rehabilitation. METHOD: This study adopted an Interpretative Phenomenological Analysis framework to understand the needs and expectations of 16 parents of 15 children with IDD and associated CCNs. Data were analyzed for the whole group, and two subgroups: parents of children 12 years or younger, and parents of adults and adolescents older than 12 years. RESULT: Data analysis highlighted the following: (1) unmet or undermet needs and expectations with regard to children's social participation, societal and familial support, childcare needs, financial requirements, and need for information; (2) changing needs and expectations of parents as their children grow older; (3) inadequacy of social participation and interaction opportunities for the participants' children. CONCLUSION: It was concluded that rehabilitation providers including Speech Language Pathologists (SLPs) need to be aware of parents' needs and expectations and collaborate with the families to attain rehabilitation goals that facilitate social participation.

Multilingual issues in qualitative research.

This study is a reflective account of how problem solving was accomplished during the translation of semi-structured interviews from a source language to a target language. Data are drawn from two qualitative research studies in which Interpretative Phenomenological Analysis was used to obtain insights into the lived experience of parents of children with disabilities in India and Turkey. The authors discuss challenges to interpretation that arise when participants and the main researcher speak the same non-English native language and the results of the study are intended for an English-speaking audience. A common theme in both the Turkish and Indian data relates to parents' understanding of their children's symptomology and the prognosis. Implications include the need for both reflective conversation within the research team to address the translation of problematic utterances, and documentation of the translation process in the presentation of research findings.